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dKos needs some medicine. I want to provide a medical voice in series form. I'm not a policy wonk, although I'd like to be. I can't claim to speak for doctors as a whole or any group of doctors. I just want to talk about medical issues as I see them as a Neurology resident at Columbia University. I can give you the details on what it's like inside the pupae where doctors develop through their larval stage. I can talk about how policy, ideology, and the individual combine and cause things to go down in the medical trenches. I've got a lot to say.

I'm going to begin with the end. Death. We fear it for a reason, people. Not only does it do incalculable harm to our individual reproductive and evolutionary potentials, but it's usually uncomfortable and undignified, to put it mildly. Our treatment of the elderly in regards to death, especially the incapacitated elderly, and the resulting costs to society is what prompted me to write this diary. I've fucking had it.

As an intern, I admitted patients from 4 major demographic groups: Chinatown, Wall Street, the nearby Federal Prison, and the local nursing home. End-of-life was always a huge issue with the nursing home patients because they were frequently on the brink, although frankly they didn't die all that often. Not as often as you'd expect people unable to speak/eat/move/think to die.

This is a problem. A common and costly problem. The problem is that they are in the process of dying. The process is long, it is painful, it is artificially prolonged, and it almost always ends in a horrific mess. I'll just sum it up like this- I don't want the standard hospital death for anyone I've ever met.

Here's the routine story-

The family never talked about end of life issues. Or if they did, it wasn't detailed enough.
The patient becomes mentally incapacitated by stroke/dementia/neurological complications of their disease.
Nobody steps up to ask for a "do not resuscitate" and especially not withdrawal of care because of one or more of the following reasons:
   1. afraid they'll be seen as working towards killing their family member by the rest of the family
   2. not sure what the patient would have wanted
   3. in deep denial about prognosis because they hear about the miracles of medicine on the TV news and/or deep down think that god is smiling on their family

The medical team proceeds routinely, subordinating the relief of suffering to the extension of life, no matter how valueless/hopeless that life may be. This is changing for the better, but many doctors still have the "life is sacred" paradigm embedded deep down. It is also driven partly by financial considerations- doctors get reimbursement for their care and procedures performed, and most importantly there is the (real or imagined) threat of lawsuits from family members if any possible care is overlooked or withheld without their knowledge.

Once the medical ball is rolling, the patient is subjected to increasingly painful and dangerous procedures- wide-caliber IV lines into the neck veins, feeding tubes pushed down the nose into the stomach, a catheter inserted into the artery in the wrist, a ventilator tube in the throat. Not all are given, it's tailored to the specific illness. People who are heavily demented may be mostly unresponsive but they are not anesthetized by their illness. They suffer.

Depending on degree of recovery/disability, these short-term fixes are converted into long-term care enablers. The feeding tube is implanted directly into the stomach, the ventilator tube is cut into the throat.

Patient's hospital stay is usually extended by infections spread by doctors and nurses from other long-term patients.

Somewhere along the way the family may be having second thoughts, but what can they do? They usually are not brave enough to break the precedent of aggressive treatment that has already been initiated, and their relative is improving by this time anyway. Planning for placement in a nursing facility is already underway, initiated by the hospital's crack length-of-stay reducing team.

The patient is discharged to a Skilled Nursing Facility (SNF, pronounced "sniff")

Patient returns every 3-4 weeks with an infection that has spread to the blood and threatens their life. It's usually from the urinary tract or lungs. The family follows precedent.

Antibiotics are given automatically, and as this is repeated, patient begins to grow highly resistant infections that go on to infect others on the same ward (see above) before going back to SNF.

I've seen numbers that say people in severely demented states last several months on average. It can't be true. It's years. The medical charts grow thicker and thicker, eventually containing enough paper to gift wrap that bridge to Brooklyn you purchased from that nice man with the sunglasses and moustache a few years ago.

After several years of this the patient's body can take no more. The heart stops, the nurses panic, the residents are called, the chest compressions start, the ribs fracture, the tube goes down the throat, the patient is electrocuted, and about 80% of the time the patient dies anyway. It is a painful, traumatic death. Worse than the death barbaric states give mass murderers.

This is not an aberration. This is not rare. This is American medicine and the standard medical death for the elderly.

As you can imagine, this all costs hundreds of thousands of dollars per patient from Medicare that could have been spent on preventive medicine or health insurance for some of the 46 million people who don't have it.

It's cruel, wasteful, and irrational. And it's surprisingly difficult to avoid. Nobody wants to go through this painful, dehumanizing, humiliating process except the fanatical Religious Right, because they're busy fighting their abortion rights proxy war ("all life is holy, from conception until death"). Reasonable people don't want this to happen, and many prepare for it. Here's the surprising part- Their preparations are rarely enough.

Most of the living wills out there give instructions about what should be done if intervention is futile and their death is imminent. They all miss the point. It's easy to say "don't do anything when the end is about to happen." The problem is that this moment is virtually unidentifiable. Life can almost always appear to be able to be extended, given aggressive enough intervention. Unsure families confused by ambiguity coupled with busy doctors will lead to the above nightmare scenario.

What you and your families need to talk about is mental status- what to do in case of permanent incapacitation, not "about to die". Who needs to take over, what level of long-term disability is tolerable, what life supporting measures they would want and for how long. (implanted feeding tube, antibiotics for infections, ventilator, medications to keep blood pressure up when their body is failing.) If people want to make the above scenario impossible, as I would want for myself, they have to be willing to ask for care to be withheld even at the risk of shortening their life. Write it all down.

It's always tricky because nobody really knows what is going to be reversible and what's not, so another standard part of your preparation should be to identify a health care proxy. Your written wishes cannot anticipate everything, and a loved one who knows what you want and can extrapolate in sticky ethical situations is critical. In New York, it's more important than your written wishes (it's really the only thing that matters.) Your HCP decides all, and can torpedo your wishes indefinitely if he/she sees fit. Get to know your state's laws and don't pick a fundie.

I've found something I'm comfortable with. My rule right now is:
If I'm permanently incapacitated (which I've defined as unable to make my own decisions) no doctor is coming anywhere near me except to give me morphine to make me comfortable. Yes, this is an option.

Think about this long and hard. I'm not dying the standard way, and you shouldn't either. Your parents and loved ones deserve better. Not all natural deaths are good, but all medical deaths are bad.

Originally posted to spitonmars on Fri Sep 30, 2005 at 05:50 PM PDT.

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Comment Preferences

  •  Tips accepted (3.98)
    and I'm not too proud to ask for a click on Recommend (I want a lot of people to get this advice)

    In my next diary, I want to talk more about the political ideology that's involved in the current state of end-of-life affairs and how this all leads to something I like to call "resident rage" (something I will keep coming back to, because it should not be ignored as a social force)

    I have plans to write about the pharmaceutical industry, the self pay/insured/publically provided for/uninsured divides, some coma/vegetative state/neurodegenerative disease stuff, immigrant cultural issues in medicine, medical statistics and research, the dehumanizing forces in medical education, and some kick-ass medical stories.

    Democrats are here to remind us that life is unfair. Republicans are here to make sure it is.

    by spitonmars on Fri Sep 30, 2005 at 05:48:41 PM PDT

    •  Good diary. (none)
      I've recommended it and I look foward to your work.
    •  Can't wait to hear more of your thoughts. (none)
      We all have to get on the same page again.  Below I posted about my mother-in-law.  In addition to this, I'm dealing with chronic health issues of my own and have worked with support groups that seek to help others navigate their way through.  So many issues...the saddest is that many of us feel as if the medical community isn't always on our side...we gotta fix this one...
      •  not on our side (4.00)
          I have a chronic condition, no insurance and i hate the system, and feel like the specialist wouldn't give me the treatment i need.  The non-profit wants 3yrs of tax forms for a sliding fee scale.  My gp is a good man though and i think a lot of him.  A lab tech told me they make all thier money off lab work.  I had bloodwork done and it was 750.bucks.  I'm pretty sure the specialist gets a cut.  I am seriously thinking of Canada.  But i can still work and may not die from it.  Then again I might be dead in 5yrs.  The system is as corrupt as the goverment.  And if you complain to the docter they put histronic in your file.  My aunt transcribes at Hopkins.  I hope i catch your future diarys. I feel bitter about doctors fighting reform, money over life.  And my regard for the pharma industry is worse.
        •  Its not much better when you have insurance. (4.00)
          I've come to the conclusing that doctors like success...if you're sick with a chronic condition, you don't offer than chance.  I can deal with that...but a little honesty would go a long way.

          Lab work...I recently had lab work done.  My insurance company negotiated it down to $48...the original cost was over $400.  This is whats wrong...you're being asked to pick up the tab.

          And yeah...the histrionic/depressed/anxious bull crap...if you're a woman, sooner or later you are going to be tagged as such.

        •  Doctors (4.00)
          It's almost like some kind of bizarre hazing ritual - if you are female; some doctor somewhere is going to put 'hysterical' in your file.  This tips off whoever sees you next to disregard any and all complaints.

          There's a way around this.  When you move, carry your medical files yourself.  Don't have them sent directly to your next doctor.  Make sure you go through every bit of it page by page and remove anything you don't like.

          Do this even if one doctor sends you to a specialist.  And don't let them bullshit you about the records.  They have to make them available to you by law.  They may charge a fee - but it's worth it to cleanse your charts of any 'emotional assessments'.

          Sorry to hear you have problems.  Me too - and it's a bitch!  I do have insurance (through my husband), but what it doesn't cover could fill an encyclopedia.  Nothing you can do except get up, and continue on.  Hang in there, Honey - you are not alone.

    •  Yes, please keep writing on these topics... (none)
      it is nice to have the knowledge and expertise of the many dkos community members contributed to further discussion.  I would really like to hear more about healthcare, especially the human side.
    •  Today (4.00)
      I received an update on my mother's condition today.  It was not a good update.  There is nothing that can be done for her, so all of the many tests, and things that they were thinking of doing have now all been set aside.  

      We are truly now at the beginning of the end of my mother's time on this earth.

      Given this, emotionally I have completely mixed feelings about your diary.  What you say is rationally true, and definitely needed information.  I realize that doctors are clinicians - that's your job.  When it makes no sense to have medicine intervene, it shouldn't.

      But might I suggest one thing to you, as an intern who will one day preside over deaths as a full-blown physician?  Something that will perhaps make it easier to accomplish what you hope to accomplish, with families?

      Please please PLEASE do not "dance like a butterfly sting like a bee" around the ultimate statement:  this person is at the end phase of his/her life.  They are going to die soon.  It is a question only of when.

      I am sitting here between brutal emotional grieving and furious anger because I had to literally force that information out of my mother's doctor - basically trick him into saying that my mother has weeks, maybe a month if everyone is really lucky.

      He'd originally answered my very direct question about how much time my mother had by giving me totally avoidist BS: "less than six months."  I'm not joking - I had to essentially trick him into telling me straight (by telling him about my mother's out of town brothers and sisters, who might wish to travel to see her and asking what I should tell them, and he said that they needed to do it in "the next week or two").

      At that moment, even though he is taking care of my mother, I hated him.  I hated him because he knew the truth and I had to pull it out of him.  I hated him because he thought he was sparing my feelings or telling me gently and yet what he was really doing was leaving the avenue -- however small -- of false hope.  The same false hope you describe that leads families to prolong life and use ultimately futile interventions as long as it "looks like" the person might be getting better.  Adding insult to injury, when we spoke yesterday and I was making travel plans, he told me that there was no hurry if I didn't arrive until the end of next week or the beginning of the one after.  I literally felt the blood running out of my veins when I realized that if I took his original advice, I might land in New York and find my mother already dead.  Had that occurred, I don't know what I would have done.

      Do you have any idea what that type of avoidance does to people? If there is no hope there is no hope, and much as it hurts to hear it, we as family members who are entrusted with the last decisions NEED to hear it.  I realize that it makes it harder initially for doctors - death is indeed a life stage that our culture has a hard time with and you're trained to be gentle with everyone's feelings.  But it is a rare family that does not have at least one voice of rationality that can help folks accept - if that voice is given time to work.  If, however, that person is identified and not told straight in the name of "letting someone down easy", it is a natural human reaction for folks to want to hang on, especially when they aren't also told that what has to be done to help the patient "hang on" is actually making their end of life experience miserable.

      I realise that medicine is not an exact science, and doctors are not miracle workers.  
      Yet doctors treating patients at the end of life are not just dealing with "a patient" - they are dealing with a "family", a system.  And for the issues you rightfully highlight to improve, they need to approach the end of life with that firmly in mind.

      Anyhow, I thought your diary was great even if mentally I'm not in the best space for it.  I just wanted to make that suggestion.

      My separate place for mental meanderings: Political Sapphire

      by shanikka on Fri Sep 30, 2005 at 08:00:13 PM PDT

      [ Parent ]

      •  We're going through the same thing. (none)
        I can't agree more about communications.  Through support groups, I have worked with so many people who feel disrespected and patronized by this unwillingness to honestly communicate.  It comes across as uncaring.  Big problem is that doctors are very unwilling to admit when they either don't know or are unable to do more...if this was clearly stated, patients and their families wouldn't feel brushed off.
      •  But sometimes the prognosis is way off (none)
        My father was given the 6 months - one year (but closer to six months) in February of 2001.  He had colon cancer that had metastasized to his lungs and liver.  He lived until July  2004.  When he had exhausted all available treatments (three of which were developed during the course of his illness) his oncologist told him there was nothing more he could offer, my father asked how much time he had left.  The doctor shook his head and smiled kind of ruefully, and said since his track record wasn't terribly accurate he was hesitant to offer a time frame and again came up with six months or so.

        I know his kind of cancer is very different from neurological disorders discussed in the diary, but he's right and the body puts up a hell of a fight.  We were able to medicate him and keep him relatively pain-free, and he was able to make his own medical decisions.

        •  I Agree with This (none)
          As my mother has fought back significant, life threatening illness previously when folks were already writing her epitath.  In the end we don't know, since (for those of us who are believers) that is truly between my mother and God.  

          The only trouble is that if a physician is going to give the news of terminal illness, and state that nothing other than comfort treatment is prescribed, when s/he is confronted with specific questions about time (since truthfully when a physician decides not to treat, I assume this is based upon a diagnosis of the reasonably soon-inevitable; otherwise of course you treat), it is incumbent upon the physician to admit something that so far at least my mother's seem reticent to:

          "I Don't Know."

          And frankly, until I told the doctor "I'm a lawyer" (the doctor at one point asked if I was a doctor; I'm not and don't play one on TV but two of my best friends are both doctors, one an oncologist) I was getting jack shit in the way of specific information.  I don't feel that it is all that unreasonable to expect.  Too many doctors calibrate their level of proactiveness to how much money a patient is bringing into a facility, and more importantly too many are victims of institutional racism same as everyone else:  my experiences with both my parents' illnesses in the past year make clear to me that too many operate on an assumption that poor+black = not only a stupid patient unable to understand, but an entire family unable to understand, such that they don't even have to try.

          /sigh

          My separate place for mental meanderings: Political Sapphire

          by shanikka on Sat Oct 01, 2005 at 08:41:15 AM PDT

          [ Parent ]

          •  Suggestion (none)
            My sympathy to you. The journey of my mother's death was a terrible gift. But only now, 10 years later, can I appreciate the gift part.

            I struggled through similar communication issues with the physicians. So very frustrating, adding to an already painful situation.

            So here's what I did: I gave them permission to say "I don't know". I explicitly told each one that I understood the practice of medicine is still an art and that if he/she was not confident in foretelling the progression of my mother's illness, that was acceptable to me. Most were relieved and the communication lines opened up.

            Sending you blessings of healing and peace to your mother...

            If I were the president, if I were queen for a day, I'd give the ugly people all the money - Laurie Anderson

            by Dillie Taunt on Sat Oct 01, 2005 at 11:12:50 AM PDT

            [ Parent ]

      •  It probably makes a difference (none)
        whether the doctor is talking to the patient  herself, or whether the patient has passed the point where she can make her own medical decisions. When a patient is still aware and rational, I suspect there is more uncertainty about the prognosis. It also seems to me that we should acknowledge that it would be sadder to shorten the life of a patient who is still interacting with the world, than one who has already withdrawn from it.

        That said, doctors can only tell us what they think, and we have to be willing to accept that they will sometimes be wrong. And doctors have to be willing to accept their fallibility and refrain from attacking patients who refuse a test or treatment. (This happened to me.)

    •  My husband and I... (4.00)
      have both made dead certain (pun intended) that our wishes will be followed.

      Legally and everything.

      Neither of us wishes to be kept physically alive by machinery, and both of us want to be euthanised if we're in agony. And, by god, irrespective of the legality, we WILL do it for each other if need be.

    •  measures of consciousness (4.00)
      Good to see a neurologist taking on these issues.  

      Key question:  How reliable are the standard measures of brain activity, at diagnosing the degree to which a patient is conscious and/or capable of feeling pain?  

      For example, I have read clinical reports to the effect that in some cases of apparently unconscious and/or comatose states, consciousness remains but is highly time-distorted such that the patient can comprehend and respond to very slow speech.  This is not the Terry Schiavo type nuttery, but reputable findings from people without religious preconceptions (sorry, no cites here, it was a long time ago, before the web).

      For example, consider certain paralytic drugs that produce the appearance of unconsciousness when this is not the case.  I can't recall the name of the compound but it used to be used in pediatric surgery until the discovery that the patients were fully awake but unable to move despite being subjected to the pain of surgical procedures.  One of my general rules about such things is, every drug has an endogenous analogue, so if a drug can induce a given state, then the brain can probably produce endogenous substances that induce the same condition.  This implies that there may be instances of paralysis that appear as if unconsciousness, but wherein consciousness still operates.  

      So:  what clear findings presently exist as to the correlation between brain activity and the presence of varying degrees of awareness or consciousness?   Here I'll define awareness as the ability to perceive inputs (e.g. light, sound, pain, etc.), and consciousness as the ability to perceive self (to know that you exist and that it is you who are perceiving the inputs).  

      What tests can be performed to determine if "someone" is "there"?   Which are the best for this purpose:  EEG, MRI, something else..?  

      And to what degree are these or other tests capable of determining if the individual is in a state of comfort or pain?  For example would you also need a blood workup for stress hormones such as cortisol, adrenaline and its relatives?  What about determination of comfort via measurement of dopamine, serotonin, endorphins, etc., and their relatives?  

      What I'm looking for is a protocol similar to the following:

      1.  If I'm apparently incapacitated and unable to speak or otherwise use motor outputs for communication, first attempt to detect communication via eye-blinks or other deliberate eye movements.  

      2.  If no such communication is detectable, next perform such tests as may be able to determine the extent of brain activity which may be correlated with various degrees of awareness and/or consciousness as defined above.  

      3.  In the event awareness and/or consciousness is detected, proceed to tests needed to determine degree of stress or comfort.   Administer drugs as needed to correct: for example anti-anxietals, mild tranquilizers, etc.  

      4.  In the event of a low probability (for example < 20%) of restoration of normal brain functioning, administer disassociative anaesthetics (e.g. ketamine hydrochloride, nitrous oxide, etc.) in conjunction with morphine, and test for changes in relative levels of stress and comfort.  

      5.  Sustain state of comfort via medications as per above to the extent possible.  In the event of loss of signs of awareness/consciousness, as determined by (EEG, MRI, or whatever standard), administer increasing dosages of morphine and/or general anaesthetics to produce and maintain a verifiably complete loss of awareness.  

      6.  Maintain that state (5) until natural death occurs.  

      What I'm going for here, is the idea that the patient could be medicated into a state of relative comfort until the natural course of their condition renders them truly unconscious, and then anaesthetized fairly completely until natural death occurs.  

      The point of the antianxietals and tranquilizers is to cut out the stress hormones that could produce otherwise undetectable states of anxiety or panic which are not amenable to analgesics or anaesthetics respectively.  The point of the disassociatives is to produce detachment from whatever physical and psychological discomfort is not remediable via analgesics or anaesthetics respectively.   These points are predicated on the fact that pain, anxiety, non-painful somatic discomfort, and various types of psychological discomfort are independent dimensions of experience, with different neurochemical pathways, and all of these need to be managed together to achieve a peaceful exit.

      Also I think it would be interesting for individuals to be able to go through a mild version of the protocol well in advance of need, to determine their individual sensitivities and responsiveness to the various medications.  Individual responses vary widely; for example, in my experience Tylenol 3 (codeine) produces excellent alleviation of pain with only mild sleepiness and low "dopeyness", whereas Darvon produces much less alleviation of pain with mild sleepiness but significant "dopeyness," so I prefer Tylenol 3 when this type of medication is called for.  The opportunity to conduct a "test run" ahead of need, could produce useful first-person feedback for adjusting a patient's medication plan to produce the desired result, rather than having to work purely on theory and test results.  

      Also with respect to the above, it seems to me that individuals would be well-served by being trained to observe and self-report various aspects of their internal state more accurately than is presently the case for the vast majority.  Learning the proper language is the first obvious step; for example even something as simple as different words for different types of pain.  This training would enable patients to provide the feedback needed to adjust their med plans during a test run (preceding paragraph), and would also enable patients with limited communication capabilities (but intact cognitive function) to communicate their needs far more efficiently and effectively than is presently the case (e.g. "I have burning pain in my lower back where the pressure-sores are located, and stabbing pain in my feet" is far more useful than "oww, it hurts so bad!").  

      What do you think of all this?  

      •  I'm not a doctor (none)
        but if you had added three more graphs, I'd a been a goner.

          Consider diarying this. Tighten up to approach the central thesis of dying with relative ease and comfort. Fine topic and thorough approach. I think this will intersect with the broader concerns of spitonmars.

          The medical situation has way too many layers and all are profit seeking. That structure should all be collapsed into something simpler, more direct and efficient.

          My mother dyed of multi-infact dimentia, something where the cure was worse than the condition, and it was a long nine years. She was tough but cognizant in some manner up until the last two years, but never really communicative.

           No one is happy about health care except those making profits.
         

        It's hard to teach a man who is afraid. - Worm

        by walkshills on Sat Oct 01, 2005 at 12:14:25 AM PDT

        [ Parent ]

      •  Short answer to a long question. (none)
        If you want that degree of certainty, you will end up with every possible heroic measure. Although medical care is a science, it is not an exact science.

        Daily Kos is the worst form of liberal web-site, except for all the others that have been tried.-Roy Solomon(paraphrasing Winston Churchill)

        by roysol on Sat Oct 01, 2005 at 07:43:05 AM PDT

        [ Parent ]

    •  This certainly corresponds (none)
      to a description of my grandmother's death last month, at the age of 97, roughly 15 years after she took to her bed. The only difference from your profile is that dementia never set in till the last few months.

      The less a man knows about how sausages and laws are made, the easier it is to steal his vote and give him botulism.

      by SensibleShoes on Sat Oct 01, 2005 at 05:39:40 AM PDT

      [ Parent ]

  •  incredibly worthwhile diary (4.00)

    incredibly worthwhile diary.  thank you.

    cheers --

  •  What's your take on... (4.00)
    ... will-making software such as, say, Quicken WillMaker?

    We recently updated our wills (both property and living will) using this software.

    It seems to be reliable, easy to use, cognizant of all the magic language needed by each state, but...

    Testing whether it really created a good will for me would involve not being able to hear the results, if ya know what I mean.

    Anyone know the legal reliability of this or other products?  Inexpensive, easy to use -- can greatly lower the barriers to people having living wills.

    •  This Living Will is one of the best (4.00)
      saw it here first recommended by RubDMC.

      Five Wishes: http://www.AgingWithDignity.org

      If you see anything in it that's not in your other will, add this one.

      My mother was dying at the same time the Schiavo mess was going on, and it turned out that my brother and I didn't see eye to eye -- it was a mess. Her life was prolonged weeks beyond what was necessary, but would have been worse if I didn't fight for minimilist treatments for her.

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Fri Sep 30, 2005 at 09:41:34 PM PDT

      [ Parent ]

      •  Thanks (none)
        Thanks - I've been scrolling through these half zillion comments looking for at least one link to such sites.  Maybe someone here could research this a bit and come up with a diary of links and referrals for various perspectives & advice.  

        Republicans: a design flaw?

        by Bob Love on Fri Sep 30, 2005 at 10:55:43 PM PDT

        [ Parent ]

  •  Thanks for taking this on (4.00)
    I've been thinking that we need more medical perspectives on dKos.  We got lawyers up the wazoo -- not that there's anything wrong with that.  I look forward to the series and exploring this first one more carefully later tonight.

    I Am The King Of The Eleven Comment Diary

    by CalbraithRodgers on Fri Sep 30, 2005 at 05:59:35 PM PDT

  •  Good work (4.00)
    I've lived your routine story. Folks, don't let it happen to you and your loved ones.

    The battles on blogs are so bitter because the stakes are so small.

    by Blue the Wild Dog on Fri Sep 30, 2005 at 06:00:26 PM PDT

  •  Thank you so much for this. (4.00)
    This is whats happening in my family right now.  Three weeks ago, my mother in law suffered from a CVA.  She's 78 and has Parkinsons.  To make a long story short, she is in what can be termed Minimal Consciousness.  She didn't breathe on her own for three weeks.  She shows no response to being lifted out of bed.  No real awareness or sign of congnition.  My husband, a paramedic, reads her daily charts...this is the only way we have most of our information.  A few brave nurses have commented.

    We had to BEG to see her treating doctor.  For the first week and a half, he refused to meet with the family unless it was at 6:30 in the morning.  Finally, earlier this week, he waltzed into her room when my husband, niece and father-in-law were there...he proceeded to pronounce that my mother in law was fine and doing well!  That he was pleased with her "progress".  What the hell....the woman is not conscious...she's the next thing to being comatose and she's doing well????  Well, the next morning, he sprung on my father in law and announced the feeding tube would go in.  

    My mother in law was very specific in her instructions.  She saw to both of her parents and in laws in the latter years.  She has a living will that specifically states she did not want a feeding tube.  My father-in-law has chosen to believe this doctor when he says that she's "going to be fine"...he believes this means that she's going to be home cooking Thanksgiving dinner.  We can't over ride him at this time, and quite frankly, I'm ready to do bodily injury to this doctor for not being straight with my father in law.

    Its so easy to say "just refuse"...we need help from hospital staff.  We need truth...I know its not pleasant to look an old man in the eye and tell him that the wife he knew is gone and won't be back...but this man isn't being paid to spout pleansantries.

    •  I hear you (4.00)

      There's a huge problem with language- not just the excessive amounts of Latin we use, but the meaning of our words.

      "Sick" to a doctor means unstable, about to die.

      "Doing well" means more stable than on admission. Nothing more. This is assessed by a quick review of the vitals and blood tests of the day, nothing more.

      Residents learn this very rapidly, because we are covering so many patients and many of them are unstable. Triage is a vital skill, because outcomes suffer when it's not done correctly. Unfortunately, irreversible mental injury does not enter into the equation unless it's rapidly worsening.

      The best advice I can give is to demand a "family meeting" with the doctor and pepper him with questions, don't let him get away until you're satisfied. Don't take a short, confidently delivered, but meaningless reply as enough and meekly say "thank you doctor." I've done it when I've been on the other side of things.

      You can also tell your father-in-law straight up that doctors go with their guts when evaluating patients more than almost anything else, and if doc's not there to spend time with her, then doc's gut may be incorrect. Go with your gut (although keep in mind that guts are easily fooled when loved ones are involved)

      Democrats are here to remind us that life is unfair. Republicans are here to make sure it is.

      by spitonmars on Fri Sep 30, 2005 at 06:26:34 PM PDT

      [ Parent ]

      •  We're trying. (4.00)
        My husband has worked in healthcare for more than 20 years.  This is difficult for us and we're "insiders" in the system....you are so right about the language problem...especially with specialists.  I've noticed this many times in dealing with others who are trying to get help...the problem is that patients tend to feel disregarded when the doctor announces that they are "OK"...I've been there myself...its hard to remain calm when being told that its "ok" if you can't stand up for more than a few minutes without passing out.  How do we help healthcare providers understand this?

        We're giving my father in law a little bit of time.  I hope that he comes to terms with my mother in laws true condition.  We're planning on making an appointment with the hospitals social worker next week.  Maybe we can make some headway.

    •  So sorry to hear you're dealing with this (none)
      Been there, close enough, done that. It's rough, very rough.

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Fri Sep 30, 2005 at 07:38:07 PM PDT

      [ Parent ]

      •  Yes...it is...and it just got rougher. (none)
        My husband just phoned...my mother in law is being discharged tomorrow or Monday.  We have less than no time to arrange nursing home care for her.  My father in law still thinks they are keeping her in the hospital to "rehabilitate" her and that in a few weeks she'll be home.

        I am so angry I could spit.  I knew this would happen...why hasn't anyone been upfront with my father in law?  Told him that this was what was going to happen?  No...he was told "she's fine".

  •  Excellent (4.00)
    My Spouse just went through this with his mother, and it was really important to have someone there who could think clearly. Nobody is ready for this, ever, so you need a plan.

    Since the bogited laws in the state of Washington don't allow us to get married, we have created an iron-clad power-of-attorney and medical_p.o.t. set of documents that will come into play.

    I have fundie relatives who would probably want me to be hooked up like Shiavo for years. What the f*ck is wrong with people?

    •  Ditto for me (4.00)
      and my spouse here in MI.  We had to spend several hundred dollars doing what heterosexuals get by signing a piece of paper.

      Fortunately our families are supportive, and we're only in our late early-to-mid 30s.  But it's good to get all of this taken care of before it's too late.

      When my mom was dying of cancer, it was a blessing that she wasn't hooked up to too many tubes to keep her going much longer.  It was awful, but it was for the best.  

      I feel like I'm taking crazy pills!

      by Matt in AA on Fri Sep 30, 2005 at 06:09:13 PM PDT

      [ Parent ]

  •  Bravo and thank you (none)
    Have been hoping for more medical voices for some time.  (Ptolemy is another.)  Look forward to seeing future diaries.
    •  Dallasdoc another! n/t (none)
    •  I understand why some professionals (none)
      keep mum.  It can be risky.  But I know we have got to have docs, RNs and LPNs here and I would love for them to speak up.  I worked for years in a hospital but only as a lowly clerk in the laboratory.  Even there I saw enough to make me think long and hard about whether pushing medical intervention to extend the life of a loved one.

      My mother and her sisters kept their father out of the hospital when he was dying of terminal cancer.  This was before the blessing of home hospice care.  They did to be close to him, to keep him from suffering a long protracted death and to keep costs down.

  •  This subject is near and dear to my heart (4.00)
    I would only add one really crazy thing that the hospice people told me while I was caring for my Grandfather who died just over two months after being diagnosed with terminal liver cancer:

    "The caring for a terminally ill loved one is something you will look back on and remember fondly."

    I thought they were insane people.  But now more than ten years hence, I realize that it was one of the most important life-defining experiences I have ever had.  Not only did I have the opportunity to spend some extrordinary time with my Grandfather, but I also witnessed what a peaceful process death can be when you are in the hands of people who revere life enough to understand that death is a part of it.

    I learned a lot in my late 20's about the cycle of life.  I was lucky to have the experience.

    •  Hospice is the best. (4.00)
      They cared for my sister in law when she was dying of a brain tumor.  She managed to stay home, with her family, til the end.  They offered so much more than what one gets from traditional medical care in medical settings...very practical advice and willing to go that extra step.  When everyone else had written her off and could have cared less about what her last days were like, hospice was THERE.
    •  Same here (none)
      My mom's final illness was due to inoperable cancer that could have terribly painful. She was 84 and ready to die - not morbidly, but simply, natter-of-factly as the natural course of things. Hospice care allowed her to go peacefully and without pain.

      It was a good experience and not without happiness, and of course sadness too. I'm sorry that Terry Schiavo's family was denied that kind of experience - that seems to me the real tragedy in situations like hers.

      We all go a little mad sometimes - Norman Bates

      by badger on Fri Sep 30, 2005 at 11:47:12 PM PDT

      [ Parent ]

      •  They weren't denied (none)
        Terry was in hospice care--here as arranged by her husband. Apparently she got the best of care, but of course she couldn't tell. Unfortunately her family refused to face reality, found some doctors (besides Frist) who gave them false hope she could be treated...and they and their batshit crazy hangers-on (including Jeb! and his brother and Congress) made things hell for people just trying to die peacefully during those awful months last spring.
        •  Tom DeLay et al denied her the dignity (none)
          that she deserved in her desired passing.

          I think that is the denial that the poster was refering to.  In addition, all of the people who were housed at the Hospice not related to the family were subject to the horrible accusations that were leveled by Operation Rescue and that fucked up Priest.  Everyone was denied peace in that time regardless of screwy doctors that participated in what I view to be torture.

          I had my run-ins with the nut jobs with my Grandfather.  I was lucky because right after they attacked me personally I sent them into see him and let him tell them what he wanted for the last portion of his life.  He had it all on paper too, but thank god he was there lucid and right as rain to tell them to fuck off.  

          It is hard enough to let go of someone you love without assholes interfering who think they know something more than you do about the person.  One guy who was about 6'4" bore down on me accusing me of trying to kill my Grandfather and insisting that I did not know what was in my Grandfather's heart.  I am a girl; was 28 at the time; unprepared for death; honest to a fault; and he was accusing me of killing my Granfather because my Grandfather had a terminal illness that no medical genius or I could fix.   The man had known my Grandfather for six months and met him at a shady Presbytarian Church - acutally it is the most chi-chi ha ha fancy Presbytarian Church in Orland Florida - locally known as Presby-World - after Disney World...  I knew my Grandfather from birth - I knew him - he was MY family - I am his descendent.  I cared for him.  We tried to find a clincal tiral for an 89 year old man with terminal liver cancer.  We had connections to the Mayo Clinic and were set to send him there if he wanted. He chose not to go - I know that he had no chance of getting a liver transplant.  Waler Payton - one of the nicest men I have ever met died before he could get a donor.  And these "pro-life" people were abusing me - a grandchild doing the best she could to care for a loved one because as an art history major in college I could not save his life and chose instead to make his last months the best we could figure out.  My Grandfather was grateful.  Those other assholes were just interrupting our fun - our opportunity for love - our peace.  That is what the poster was talking about.  I grieved for every member of the Schiavo and Schindler family because if they had not been so twisted up by outside forces they might have been able to process the part of life called death with much more grace and much less pain.

          As I said this is a subject near and dear to my heart.

          •  I was interpreting (none)
            "her family" to mean her parents and siblings, who fought tooth and nail for ten years in the courts and in the Florida legislature, to have her taken out of hospice and "treated." They were the ones who brought Tom Delay et al into it. Fact is, her dignity (so far as the world outside was concerned) was long gone at that point. You have my deepest sympathy as one of those who were caught up in the ugliness they created.
  •  I worked as a nurse for 24 years.... (4.00)
    ...and I can vouch for everything the poster has presented. I worked in Surgical Intensive Care in Bexar County Hospital in San Antonio, Tx. (It has a different name now)I saw horrible, horrible things almost daily. Things which would make most people run screaming from the room. Burns are the worst. I know how easy it is to get killed slowly in a hospital because some asshole didn't wash their hands, or was too hung-over (or more likely, overworked to the point of exhaustion) and give the wrong medication. i no longer trust the "medical establishment" and only see doctors when I have no choice.

    Which is why I'm trying to work up a nice, clean heart attack. I'm trying to time it to when I reach about 70 or so. I eat crap. Fat, red meat, (almost no vegetables), baked goods, ice cream, -anything thats "bad" for you. I'm not much overweight and my job is pretty physical so I keep it down. The kicker is my serum cholestorol is always in the 70's!! And I'm as healthy as a horse. Go figger.

    But the poster is right: You don't want to die in a hospital. The fuckin' DEA won't let MD's give adequate pain medication to most patients who really need it, especially those in their final days. If you're poor, forget it; you're gonna suffer.

    The whole system of medicine in this country is  itself sick. I refuse to go to a hospital if I have a choice.

    •  Revise your plan. (4.00)
      I haven't had a heart attack, but do have congestive heart failure.  Its no bowl of cherries and not the "easy way" out.  

      Want some of my cholesterol?  I am practically a vegitarian, in my early forties, never been overweight and still can't keep mine down.  Not even with drugs.

    •  Diet is virtually irrelevant to lifespan (none)
      Smoking is about the only thing you can do to shorten your lifespan other than hazardous activity including getting infected with lethal pathogens. And smoking leads to a long and miserable death.

      Diet is just about meaningless. Your lifespan is almost entirely dictated by your genes. These are my educated opinions but the facts come down in favor of this as the truth daily.

      Now what we can see with diet is stuff like phenylketonuria, which is a genetic disease. By avoiding certain nutrients like phenylalanine in their diets, these individuals can lead more normal lives. But again, this is a specific genetic condition with a specific cure. Avoiding phenylalanine will do nothing to benefit most people and may even hurt a bit.

      So it is with stuff like cholesterol, most likely. Sure, if you have a selection criteria for your study that enriches your population sample with a certain genotype, you will get a result tailored to that genotype. But applying that result to other genotypes (and I'm not saying blood type which is the subject of a fad diet series and is only two out of ~40,000 genes) is irresponsible science and just leads to neurotic fixations.

      Just ride out your time in a responsible and pleasant manner, and take a pleasant exit as the wonderfully-nicknamed spitonmars suggests.

      Oh and pass the chips.

      The dark at the end of the tunnel is an oncoming age.

      by peeder on Fri Sep 30, 2005 at 09:54:05 PM PDT

      [ Parent ]

      •  But (none)
        hydrogenated fats (like Twinkie filling) aren't metabolized, so they never leave the body - no?

        Republicans: a design flaw?

        by Bob Love on Fri Sep 30, 2005 at 11:02:19 PM PDT

        [ Parent ]

        •  If that were the case (none)
          I would be oozing Twinkie filling. Haven't had one in a few years (but thanks for the reminder), but I've eaten my share. The best part is the goo that sticks to the cardboard.

          My cholesterol has always been in the low 100s, even during Twinkie binges.

          We all go a little mad sometimes - Norman Bates

          by badger on Fri Sep 30, 2005 at 11:52:39 PM PDT

          [ Parent ]

        •  Trans-fats exit via the urine (none)
          They are broken down as much as possible and apparently do some damage before the kidneys filter them out.

          Consuming poison can reduce your lifespan, sure...trans-fats are not found in nature so the body doesn't know what to do with them. However, I doubt they reduce lifespan more than a week on average even if you ate a tub of crisco every month.

          The dark at the end of the tunnel is an oncoming age.

          by peeder on Sat Oct 01, 2005 at 01:01:28 PM PDT

          [ Parent ]

  •  Thank you. (none)
    We saw my father go this way following a traumatic head injury. My stepmother pushed every step of the way for whatever measures would bring him back, even after the initial 5-hour surgery that took out a major chunk of his brain left just a vessel for suffering. Three years later, the inevitable pneumonia finished the process. Given what we watched him go through, that was a blessed day.

    Your diary is one that every reader of kos should keep, copy and distribute to everyone they care about.

  •  Thanks from one in the middle of this. (4.00)
    Glad to see you are planning to be around for a while.

    I'm experiencing this from a different perspective -- the 60 year old daughter of two 85 year old parents who are affluent and endowed with health insurance the likes of which will never again be seen on the face of the planet.

    They are not interested in quality of life -- they want LIFE, no matter what.  They have totally bought into the medical death-in-life.  The hospital is an outpost of their home life; they go back and forth constantly.  This is what they want.   In their minds they are never going to die.  Wisdom is not approaching.

  •  The Oregon solution: making advanced (4.00)
    directives a very common part of the medical encounter.

    As usual, you'd expect Oregon to be on the forefront of this issue, given our status as being the only state to allow Physician-assisted suicide, and we are true to form.

    The advanced directive is brought up very frequently here, often very early in the encounter with a primary-care practitioner, and almost always in the hospital setting, and it spells out what type of life-support people would want, code status, etcetera, making up the exception by having the vast majority of people die at home rather than in a hospital.

    (I haven't read the entire post due to length so excuse me if this is repetitive)

    The ability to quote is a serviceable substitute for wit. Somerset Maugham

    by verasoie on Fri Sep 30, 2005 at 06:19:02 PM PDT

    •  Typo: "making US the exception" n/t (none)

      The ability to quote is a serviceable substitute for wit. Somerset Maugham

      by verasoie on Fri Sep 30, 2005 at 06:24:28 PM PDT

      [ Parent ]

    •  Unfortunately (none)
      I hear this (the assisted suicide law in OR) is the first case the new Roberts Supreme Court will hear next week. I fear it may not stand for long.
      •  Very true. Bastards, though it's already (none)
        catching on elsewhere, Maine I believe, and I'm confident California will follow suit relatively shortly after they ditch Ahnuld.

        The ability to quote is a serviceable substitute for wit. Somerset Maugham

        by verasoie on Sat Oct 01, 2005 at 12:51:26 AM PDT

        [ Parent ]

      •  If the decision comes down before O'Connor leaves (none)
        it will probably be upheld.  Her husband has long had Alzheimer's and she's probably attuned to these issues.

        "If you [just] wanted to reduce ignorance, you could ... abort every Republican baby in this country, and your ignorance rate would go down."

        by Major Danby on Sat Oct 01, 2005 at 11:39:36 AM PDT

        [ Parent ]

    •  I want the cocktail (4.00)
      I really do - I have no fear of death, but I greatly fear being a burden, being alone in death, being incapacitated for days/months/years. Pain, shame, falling apart. I want the cocktail.
      •  Here in Oregon, access to cocktail is all -- (none)
        -- or almost all.  Most studies show that the vast, vast majority of people in the state who seek the right to our Death with Dignity provisions don't end up making use of them.  But they go through their illness to death much more peacefully, confident in the knowledge they can act on their own behalf whenever they wish.
        •  Death is giving up control (none)
          of everything we know and understand. The cocktail or assisted death/passing (including the work done by hospice) gives the dying a small degree of control in this final act. Makes sense that the actual services aren't always employed, but that the  potential gives comfort.
          I will never understand those who feel this (assisted suicide/passing)is such a problem.
    •  asdklfj (none)
      I used to be a social services director in a skilled nursing facility.  One of my main responsibilities was to get copies of any advanced health directives and powers of attorney that residents may already have.  If they had none, I gave them copies of forms that they could discuss with their family.  (Or that the family could review if the resident was unable to do so because of their illness and/or dementia).    

      It was a simple checklist where they could determine whether or not they wanted CPR, artificial nourishment, hydration, etc.  While this was not as thorough as the advanced healthcare directives one can typical put into living wills and similar documents, it was better than nothing.

      I also explained to them the physical damage that can occur from CPR, especially to fragile bodies from age or disease, so that they understood that the resuscitation could potentially cause more problems for the person.  I would often have an RN help explain this to them as I am not a medical professional.

      Anyway, I don't know if this is state law, but this is common practice in skilled nursing facilities in Washington state.  

  •  Needed diary - (4.00)
    And it's not that easy to just say dnr.  After all, I didn't know how my mom felt when she wasn't being fed or given water. But she had refused food for sometime - that to me was a signal from her spirit and her body.  I let her go - I wish it had gone faster.  This may not be popular but I hope in the future we allow euthanasia.  As well, hospitals won't keep people who are dying - don't want it on their records - so they send them to nursing homes.  And in america today - with everyone working - no one can care for a dying loved one at home.  Nor are any of us trained to care for the dying -- I had really nice people from hospice but they were only there short times -- Nothing about my mother's death was comforting -- and I'm a Christian who "sometimes" believes in an afterlife -- nothing. I have given instructions to my doctor and a close friend - Thanks for reminding me - I should update and review.

    I look forward to your future diaries - and I make mention that nurses are so important in daily care -- and in that regard my mom was fortunate.  God bless them.

     

    The beneficiaries are likely to be...large corporations and development firms. (O'Connor, J. dissenting in Kelo). God bless you, J. O'Connor.

    by xanthe on Fri Sep 30, 2005 at 06:20:32 PM PDT

    •  Get a good, thorough living will (none)
      Sign, give multiple copies to people. I have three copies in 3 states. Basic message: "OK, God, try to smite all of these people before you smite me." Not too darned likely.

      Source: http://www.AgingWithDignity.org

      Consider getting 10 or 25. Once you see it, you'll want to give one to everyone you know, and some of those people may want them for friends or relatives.

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Fri Sep 30, 2005 at 07:36:57 PM PDT

      [ Parent ]

      •  the trouble with Living Wills, (none)
        at least IME, is that there can be so much gray area. My mother had non-Hodgkin's lymphoma, had made a pretty dramatic partial recovery, but landed in the hospital with a ventilator trying to get over an infection.

        We all knew she did *not want to be on that ventilator. Nobody wanted to keep her alive just to keep her alive. But the oncologist was telling us if she could make it past this infection he could cure her cancer -- and how do you sort through those probabilities, especially when the prospect of losing your mother is making you crazy with grief?

        She had a horrible hospital death, just as the diarist described. I would give anything for a do-over. Yet...but...it's easy to say No Machines when you know someone's going to die without recovering much or any quality of life. But so much of the time you just. don't. know.

        •  At what age was she going through this? (none)

          In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

          by AllisonInSeattle on Fri Sep 30, 2005 at 09:42:34 PM PDT

          [ Parent ]

          •  she was (none)
            73. And we just went through the same thing with my BIL this summer -- he was 53, had a stroke, lived in ICU for 5 weeks. Objectively, it's easier to say taking extreme measures (ventilator, feeding tube) made more sense in his case, since he was relatively young and had an 11 yo daughter and a 14 yo son. But it's really hard, in either case, to decide at what point you're going to give up on them.

            I don't mean to sound like I am in favor of anything like Schiavo. And Living Wills are helpful. But the problem is that sometimes a person gets very ill and needs a ventilator etc. and then recovers...and we have no way of knowing which persons those will be.

            With my mother, after 5 days on the ventilator we could see she wasn't going to improve. So we asked the doctors to remove the tubes, and she died within minutes. It still haunts me, but I don't have any certainty that other decisions would be any less haunting.

    •  You can keep them at home (none)
      We did, with both my mother in law and my mother.  My mother had Alzheimer's.  My mother in law had some dementia and bone cancer. And how did we do that?

      First by understanding that the care your parent will get in a nursing home is not particularly attentive.  A ratio of 16 patients to one CNA is not uncommon.  That means that your parent is only going to get about 1/2 hour of attention per shift.  If your parent needs to be fed by hand, it effectively limits how much they will eat.  In several bad nursing homes locally, people have literally starved to death this way.  If your parent isn't thinking enough to push the button for the nurse, they will sit in their dirty diapers until it is convenient for the CNA to change them. This means that if you live locally, and you want your parent in the nursing home to have any comfort, you are going to have to spend a lot of time there.  

      If you talk frankly to your parents, it is very likely that their biggest fear is not of death, but of spending significant time in a nursing home.  Remember, they witnessed the deaths of their parents, grandparents, aunts and uncles.  They know the grim truth.  In my parents' case, they made us promise that they would never go to a nursing home.  That's what got us started down this road.  When my mother in law needed care, we already knew how to do it, and just ran the same routine.

      The second thing you need to realize is that when patients suffer from dementia or Alzheimer's, the place where they will suffer the least confusion is in their own home.  Not your home.  Not a nursing home.  Their own home.

      The third thing you need to realize is that Medicare is not going to pay for that much of their nursing home care anyway.  The best use that you can make of their money is to keep them in their home as long as possible.  When they actually need a nursing home, they will be less cognizant of what's happening to them, and that's a better time to use their Medicare allowance.

      The alternative, which we used, was to use the parent's savings, augmented by some money of our own, to set up care in their homes.  There is a point where the patient is going to be beyond what you can afford to care for at home, or when care may be beyond what you can set up at home, but you can limit nursing home stays to the shortest possible times, and avoid entirely the scenario that spitsonmars describes if you and your loved ones are lucky.  We did.

      We hired the CNA's ourselves.  An agency just adds overhead. We hired directly, and did not use an agency.  Ask to see their CNA, RN or LPN certificates. In my mother's case, we needed 24/7 care.  My mother in law did not need as involved care.  She needed the cooking done, supervision of her pills, and some help with dressing.  The amount of care she needed increased up to 10 hours per day, 3 and one half hours in the morning and 6 hours per evening.  Visit frequently.  Call frequently.  Have the CNA's keep a running report book and read the book.  Both our parents had better food which they liked better than in an nursing.  They had consistent care from people they liked.  They slept in their own beds, saw the pictures of their loved ones that weren't present on the walls, and were convenient for visiting by those people who wanted to visit.

      This is not as expensive as you might think. My mother in law died last November, and the rate that we paid was $12.50 per hour here in CT.  In my mother's case, we were able to hire an RN with back trouble for the shift that did not involve lifting her for the same rate as the CNA's.  

      In my mother's case, I had to get declared her conservator.  In my mother in law's case, she put my husband as a cosigner on her checkbook.  You absolutely must keep good records of everything spent.  If you are a conservator in CT, you must file regular reports with the probate court.  When your parent dies, family members may worry about what you took and what you spent.  Good records are the best solution.

      My mother died in a hospital from pneumonia.  Because I had been daily involved in her care, I knew enough to resist having a breathing tube inserted.  She never went to a nursing home.

      My mother in law's cancer led to her final hospitalization, and she also died in the hospital, where we also knew enough to refuse extraordinary treatment.

      If you can get a relative to cover your visiting and supervising duties from time to time, this particularly works out well.

  •  Ethics hasn't caught up with Medicine (4.00)
    I went through this as the HCP for my mother. She was dying - and knew it. It was a progressive thing, no doubt in the outcome. Still haven't gotten over the whole mess and the aftermath. She did NOT want any extraneous efforts, no respirator, whatever.

    There were instructions to this effect. Her  doctor philosophically agreed with "making death as easy as possible."  BUT specific instructions  seem to be "lost" or ignored in the heat of a moment. A crisis - she ended up on a respirator - "temporarily".   Something she never wanted.  Now, once you're on this, you're pretty sedated....and kept that way. You could see a certain despair in her eyes when she was sort of conscious but it's hard to say what she was thinking - if anything. No real way to express your wishes.  Once on one, she was never going to get off.

    She DID die, and thankfully it didn't take too long - a few weeks in the hospital for the end.  But it was longer than I was comfortable with.  If she HAD lasted any longer, I would have felt compelled to proactively have the respirator removed.... something I dreaded, but felt compelled to do following her wishes.

    This is not a situation ANYONE should have to be put in.  Heed the advice here and be SPECIFIC.  Talk about your wishes with ALL involved.  You'd be astounded at the petty, long thought dead issues and sibling rivalries that arise in such cases.  But the Health Care Proxy is the one ultimately responsible. Not a job you really want.

    This all has to do with a focus on medicine and technology - a focus on prolonging life instead of allowing it to pass with some dignity and control.  I figure we live multiple lives...death is simply the step in the middle....necessary for a new beginning. Why fear death? A friend who died far too young thought the same - her death was horrid and long drawn out.  She did all she could to prepare those around her for HER demise.  She was more worried about how those left behind would fare....

    I expect that this is an issue that will never be resolved....religious groups seek to impose THEIR beliefs on others......short-circuitinng INDIVIDUAL wishes.

    If death is not to be feared, why prolong the inevietable in a painful and useless way? Does it do the soul any good?  On a pragmatic basis, why focus resources on lost causes, when efforts could be spent on those WITH a future?  Hundreds of thousands are spent prolonging lives that nobody - including the person in question - WANTS prolonged. It could be spent on children and those who CAN be saved and cured.....

    Still can't shake the image of that body - at 3 in the morning.....not the person I knew....she should have died "easier."  

  •  Excellent advice.. thank you spitonmars! (none)
    When my elderly mother was on the doorstep to the kind of horror you describe our family was very lucky because my older sister is a nurse.

    She was designated the health proxy.  She made sure that a 'do not resuscitate' order was put in place.  A morphine drip was available at the very end to ease the passing.

    When the time came our mother was able to die in peace, but I'm sure our situation was unique because of having a knowledgable medical professional in the family.

    "Well, if crime fighters fight crime and fire fighters fight fire, what do freedom fighters fight? They never mention that part to us, do they?" --George Carlin

    by DoDi on Fri Sep 30, 2005 at 06:29:23 PM PDT

  •  Why Fear Death? (none)
    Religion does a good job of puting the fear of death into people. Evolution did the rest (survival instinct). It does not have to be so hard to die. Why can't people accept that birth and death are different ends of the same spectrum.

    IMHO, the worst thing about death is that I wont get to see what happens (to my kids, the world, technology, science etc...) after I'm gone. Bummer that it has to end.

    "I'm not afraid of dying, I just don't want to be there when it happens." - (after Woody Allen he said, "I don't mind dying")

    ARB

  •  one other suggestion... (4.00)
    ... I learned from my sister the nurse that you have to take control of the situation and be pushy.  Don't let the hospital get the upper hand because your loved one is NOT thier priority.

    "Well, if crime fighters fight crime and fire fighters fight fire, what do freedom fighters fight? They never mention that part to us, do they?" --George Carlin

    by DoDi on Fri Sep 30, 2005 at 06:33:22 PM PDT

    •  An excellent point (4.00)
      thanks for making it. You may also have to go "face to face" or "toe-to-toe" with some relatives. To get the idea through their heads that the person is GOING TO DIE may take a bit of undignified, OK, ugly dialog. I know because I just had to do this with my brother last March, re our parent.

      But I had to do it, so I did.

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Fri Sep 30, 2005 at 07:29:36 PM PDT

      [ Parent ]

  •  squares with my experience (none)
    prolonged and costly life-preserving measures belong to the well-insured, who have family who have usually operated at a significant distance from their elders.

    the elderly were one of the worst who fared in Katrina aftermath.

    it's like a faucet-either hot or cold for the elderly.

    that's why I am squeamish about this discussion.

    "bush solves medicare crisis by going with cultural flow and letting elderly drown"

  •  Thank you very much (none)
    for this diary, spitonmars. Excellent work.

    You've articulated & clarified many of my instinctual fears regarding a medically 'managed' (or mis-managed) death. I truly fear the management more than the dying. One is a matter of the natural progression of life; the other is a perversion. Your suggestions are invaluable. I look forward to more.

    •  quick ps (none)
      Despite my high opinion of your diary, I admit that I was mystified by your statement that death does 'incalculable harm to our individual reproductive and evolutionary potentials'.

      If you're speaking strictly on a mundane level (rather than spiritually, with regard to multiple forms of being), I'd say death pretty much eliminates reproduction & personal evolution altogether.

      •  just (none)
        being a little facetious. Maybe not the best subject to try to inject light humor into, I'll be more considerate in the future.

        Democrats are here to remind us that life is unfair. Republicans are here to make sure it is.

        by spitonmars on Fri Sep 30, 2005 at 07:15:19 PM PDT

        [ Parent ]

        •  Aha! (none)
          OK, thanks for clarification. Personally, I wasn't offended -- just thrown off by the joke so early in a diary regarding such a grave subject.

          ;)

        •  I found the remark funny (none)
          and not out of place at all.

          My mother died 4 weeks ago, luckily her passing was as dignified as it could have been under her particular circumstances and the hospice involved did an incredible job and are still very helpful and very much in touch with my stepfather. This happened/is happening in England where I think the attitude to death is a little more pragmatic than it is here in the States.

          Thankyou for writing this diary and I really look forward to reading more of your pieces.

          Cheers

          'Patriotism is your conviction that this country is superior to all other countries because you were born in it'. - GBS

          by stevej on Fri Sep 30, 2005 at 07:45:50 PM PDT

          [ Parent ]

  •  Excellent diary (none)
    we need more health care perspective in Daily Kos, and more realism about death in our society in general.

    I worked for ambulance services for a dozen years and saw many codes.  Whether hale or frail, the person on that table had very little dignity left by the time the thing was over, and a lot of them were just going through the motions for someone too old to have a realistic chance of survival--or too demented to have much quality of life if so.

    "A people that values its privileges above its principles soon loses both." --President Eisenhower

    by rhubarb on Fri Sep 30, 2005 at 06:47:14 PM PDT

  •  The first time I cant wipe my own ass (none)
    and someone has to change my diaper, I want a nice healthy dose of morphine.  

    Economic Left/Right: -7.25 Social Libertarian/Authoritarian: -5.13

    by calipygian on Fri Sep 30, 2005 at 06:53:45 PM PDT

    •  You need (none)
      to write that down and explain it to whoever makes decisions for you when you become incompetent.
      •  For my Grandfather it was eating (none)
        He had alzheimers and didn't have any problems with the 'outgoing' bodily functions, but had made a statement about how he never wanted to be 'fed'.  So once he was no longer able to eat, he went on a liquid diet.  And when he was no longer able to drink, he slowly died.

        Luckily, he was sufficiently medicated and the family had time to spend (a full week) to pay their last respects.  In fact, by the end we were all joking that he better die soon or else people would have to leave and miss his funeral.

        Thankfully in our family, we have had a lot of discussions about death and do not fear it.

        Two of my grandparents have died with hospice help and a third is currently under hospice protocol.

        No way do I want all that unneccesary painful intervention at the end of my life.

        America works best in spreading democracy when people over the world see something they want to emulate. Richard

        by Mlle L on Fri Sep 30, 2005 at 08:49:09 PM PDT

        [ Parent ]

  •  Very informative first-hand information (none)

    This is great information, more people need to hear and think about this.

    Our family had to make a decision about "do not resuscitate" for my dad who entered a nursing home. We were given guidance and a very good pamplet ( I wish that I could find it now) that explained that making the "do not resuscitate" decision was the most compassionate one as you have explained first-hand. It was a very hard descision even for a progressive democrat to make. I feel very comfortable that we have made the correct decision now and not in a moment of desperation.

    The country is aging and these issues have to be addressed.

  •  Thank you. (none)
    Having held my grandmother's hand as she died, and having months of hospital time and surgeries under my own belt I can say with certainty, when it's time, it's time. Make sure your family knows when it is.

    I need to steal a good sig.

    by John West on Fri Sep 30, 2005 at 07:04:31 PM PDT

  •  Health Care Dysfunction... (4.00)
    This diary highlights one of the perverse aspects of the medical care system.  A HUGE amount of finite health care resources are expended in the last 30 days of a person's life, and as the diary points out, this is NOT to minimize someone's suffering.

    Meanwhile, pregnant mothers go without prenatal care, and infants and children go without medical care, and adults go without wellness care. The living get next to nothing while the dying get a lot--and it is given in a way they do not want.

    There are a number of reasons for this: the way insurance works, the way medical technology works, the tendency to do what you are trained to do, and the impulse to be heroic and save lives.  There is no glory in giving someone a checkup.  But what we have is, again, a perverse outcome.

    Peace in a world free of Religion, Peace in a world where everyone gets Heaven... -- Toni Halliday

    by Wintermute on Fri Sep 30, 2005 at 07:04:45 PM PDT

  •  I don't plan on dying (4.00)
    So this diary isnt very useful to me. heh.
  •  Where We Focus Our Lifetime Health Spending (4.00)
    At the beginning of the managed care movement, it was common to hear a frightening statistic. I recall seeing it phrased several variants of Americans spend most of their entire life's healthcare investment on the disease that kills them. Other versions were that most of our lifetime healthcare spending was in the last few months of life.

    The debate I remember from some 20 years ago covered both the pain-and-suffering angle of this diary, as well as the morbid economic fixation on our final losing battle instead of investing a higher percentage on quality of life from cradle until the terminal period.

    Thanks for the reminder of this diary.

    We are called to speak for the weak, for the voiceless, for victims of our nation and for those it calls enemy....--ML King, "Beyond Vietnam"

    by Gooserock on Fri Sep 30, 2005 at 07:05:58 PM PDT

  •  We need a new outlook on death (4.00)
    What drives me nuts about our quest for prolonging lifespans (and some people even dream of immortality), is that no one seems to have considered what it will lead to.

    Think about it. If we drastically slow the death rate, we'll have an ugly choice to make: Either we accept a rapid increase in population (fewer people dying plus the usual number being born equals more people), or we accept that some drastic means of slowing births will be necessary (if we want to avoid further overpopulating the world). Depending on how successful we are in cheating death, the number of newborns might have to be SEVERELY curtailed.

    Personally, I find both of those unacceptable. Do we want to kill the planet with more and more of us? Probably not. Do we want to get into a situation where we have to choose who can reproduce, and who cannot? Who gets to decide? Do you think for a minute that won't be hugely controversial?

    Personally, I prefer a world where the tired blood gets retired, and new blood is given a chance to fix all the problems that we couldn't or wouldn't fix oursleves. Living in a world without the hope that each generation brings would be a friggin' nightmare.

    Enough with the life extension business already. Let's accept death, and focus instead on improving the quality of the life we've been given.

    "Who told you that you were naked?" Genesis 3:11

    by mrhelper on Fri Sep 30, 2005 at 07:12:46 PM PDT

  •  An excellent source of living wills (4.00)
    seems the needed conclusion to your diary. Send people off to a trusted source, that's legal in the majority of states (ck with your state).

    During the Schiavo debacle I wrote about why I didn't want to live like Terri, or the people you've watched die. It's this dKos diary: TinyURL: http://tinyurl.com/86b9c

    It includes a link to an excellent living will, 5 pages long. Questions to ask and ponder. If you want, you can also get a worksheet to go along with it, to walk you through decision-making steps.
    http://www.AgingWithDignity.org

    Readers may also like to check out RubDMC's diary: "So you're going to die..."  http://tinyurl.com/a8oy3

    Spiton is right -- we all need to do our part to stem the tide. Please get a living will and fill it out!

    In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

    by AllisonInSeattle on Fri Sep 30, 2005 at 07:23:19 PM PDT

  •  Thanks (none)
    for reminding us of what we really don't want to think about.  It is important now to think about and plan for the time when we will not be in conroll.  I think we'd all prefer to die with dignity and the least amount of pain possible.  
  •  Quick read now (none)
    More in depth later.

    This is important stuff because, simply, we all die.

    "...psychopaths have little difficulty infiltrating the domains of...politics, law enforcement, (and) government." Dr. Robert Hare

    by RubDMC on Fri Sep 30, 2005 at 07:29:45 PM PDT

  •  There are things worth than death. (none)
    They include:

    Tube feedings, ventilators, catheters, decubitus ulcers, dementia, fear, anxiety, depression, neglect, exploitation, abuse, surgeries, "procedures" and tests, uncontrolled pain, lonliness, loss of rights, aphasia...

    I do not mean to scare people.  This is hidden from our view. People knew all this fifty years ago but modern medicine has whisked it out of sight.

    Thank you for diarying about this.  It's important.

  •  Oh, thank you, SoM, (4.00)
    for this diary.  I cried.  It brought back my Dad's death in '02.  Not because he went through all of the worst, but because he did it all right.  He had a living will and a long-standing DNR.  When he began bleeding internally from the steroids they'd given him to clear the pneumonia from his lungs, the doctor said, "We can fix this.  We'll just take you in to surgery and cauterize the bleeding".  I could see Dad think through the previous year: debilitated by pneumonia the previous spring, the stroke in early summer, his recent illness.  And the constant struggle to walk, to gain strength, to create meaning when so many of his pastimes and hobbies had been stolen from him, and he said "No!  Unplug it all.  I'm not afraid to die!"  And God bless the doctor, after some heavy conversations with my Mom and me, he agreed.  Dad died quietly and peacefully with all of us there with him.

    Having said that, I would add: everyone needs to be prepared to be physically present when their aged or incapacitated loved ones are at the mercy of medical personnel.  Many of the hospital workers were wonderful.  Some others treated Dad like a crazy old man who had no feelings, either physical or emotional.  Be there for them my friends.  Your loved ones will need you.

    George W. Bush deserves a fair trial.

    by CJB on Fri Sep 30, 2005 at 07:30:59 PM PDT

    •  Being there.... (4.00)
      ...thats why policies like Family Leave are so important....life doesn't stop because a loved one is ill.  Its something we're all going to face.  Lets allow people to take care of their families with dignity...

      We talk so much about family values...how much more value-oriented can you get then this?

      •  "Family Values" (4.00)
        Nothing more than a euphemism for the unabridged right to inflict corporal punishment on children.

        Imagining and planning for death requires maturity. Our culture does everything it can to prevent maturity from ever occurring, wherever it threatens to blossom.

        •  "Our culture does everything it can (4.00)
          to prevent maturity..."

          What an interesting and thought-provoking statement.  And true, it is.  Our society, while pretending to advocate self-reliance, actually promotes amazingly selfish and adolescent behaviour.

          This requires some rumination.  Thanks for the evening's mindbend.

          George W. Bush deserves a fair trial.

          by CJB on Fri Sep 30, 2005 at 09:28:41 PM PDT

          [ Parent ]

      •  Yes, so true. (none)
        For us, it was very abrupt.  But still, all family members had to be able to leave work instantly to be there that day.  In today's work environment, that could be a firing offense.  employers need no reason to let people go.  

        It's got to get better.

        George W. Bush deserves a fair trial.

        by CJB on Fri Sep 30, 2005 at 09:24:40 PM PDT

        [ Parent ]

  •  I'll never forget (4.00)
    some of my Mother's last intelligible words before she sank into a hell that lasted for five more years.

    She was starting to not know or understand the world around her as the dementia started to take hold and she said to me:

    "I don't want to live like this, you have to do something"...and my response was: "Mom, I can't kill you, I would go to jail" and she looked away with tears in her eyes and nodded sadly.

    My mother had been an RN, working all her life with mostly geriatric patients...a kind and caring person, she knew what was coming.

    We MUST do something about how we leave this world...we must have a dignity option that allows us to choose our way out.

    Our beloved pets are treated with more respect...our beloved family members must be afforded the same respect.  

    I want that respect.

    "You never have to get down on your knees, you don't have to holler please, please to the little tin god." Don Henley

    by trinityfly on Fri Sep 30, 2005 at 07:40:58 PM PDT

  •  our parents, aunts and uncles are in their 70s (none)
    And they have all drawn up their paperwork for when they want DNR in place.  As retired nurses and scientists and social workers, all have seen prolonged dying and do not wish it for themselves. Several have do-it-yourself plans that they have shared with us in the event of the progression of certain illnesses.  
       I confess it's not the most pleasant of subjects but I'm surprised they've all come up with plans on their own.  
      The aunts and uncles on my husband's side, all pretty religious, made the decision to not do anything more for their beloved mother, the kindest grandmother ever.  The hip fracture, the incontinence, the confusion, the slow decline.  When
    faced with the crisis of deciding whether a leg should be amputated and her lungs not sounding good, they decided to let her go, to let the pneumonia take her.  It had been a long life and how cruel would it be to have more suffering, more indignity heaped upon someone who could no longer understand why all this was happening.
       It helped that there were people who were able to say, No thank you to treatment.
      Education is the key. My own mother saw this in gyn/oncology.  Women who knew their options and realised when they could do no more and made plans for hospice, for comfort.  And then in the same room, next bed would be an innocent lady from rural MO, knowing nothing about her advanced CA and believing that another hellish exploratory surgery was mandatory and my mother knew (and could never say to her patient) that not only was the disease terminal, it was going to be extra suffering from recovering from surgery.  
       How precious life is.  Nobody wants to leave the party early.  But if it is pain and misery (which this excellent diarist explained in vivid details I did't know about), somebody has to be strong enough to say Enough.

    You can teach creationism in our school if we can teach calculus in your church.

    by offred on Fri Sep 30, 2005 at 07:43:41 PM PDT

  •  Great subject! (none)
    I'm glad to see this diary and your plan for others. This is something that is dramatically necessary today. I thought more people were paying attention to these things around the time of the Schiavo headlines, but interest has gone away now that Terry herself has died. I certainly don't plan on dying in a hospital if I can help it. I don't have a formal HCP yet, but my kids know my wishes and I have no doubt they will be followed.

    However, if you are in an emergency situation, with no records available -- so no record of a DNR, and a critical care decision must be made on the fly, is the doctor going to take a family member's word for it, or do you have to produce the document before the doc holds off on the feeding tube insertion or other dramatic life-sustaining measure? Does that get into state-by-state legal stuff?

    Also, if possible, since you say you have access to all these insights from doctors :) , I would like to see you address at some point in the series how doctors and those in the related professions REALLY feel about universal health care. Because if the health care professionals aren't behind it, it will never, ever happen.

    •  to be fair (none)
      I never claimed to have access to insights from doctors, I can just offer you insight into my own experience as a doctor and medical student, which adds up to a little over 5 years.

      Similarly, I can't tell you how medical professionals feel about universal. My gut tells me they'd welcome the increased simplicity but fight any reduction in payments. Same as anyone else would if their source of income was being debated. I'll go into this more, but like I said, I don't know a tremendous amount about policy.

      As far as I know, the DNR action would depend on the doc. Plain and simple. Resuscitating someone who is DNR is considered assault. Not resuscitating someone who wanted it could bring a lawsuit. You could be screwed either way, so if family says DNR, that would probably hold.

      Democrats are here to remind us that life is unfair. Republicans are here to make sure it is.

      by spitonmars on Fri Sep 30, 2005 at 08:45:36 PM PDT

      [ Parent ]

  •  I am an RN... (4.00)
    and have spent a thousand years in critical care units (ERs and ICUs).  This diary is painfully accurate.  Everybody who reads DailyKos needs to read this, study it and learn from it.  If you don't have a durable power of attorney for healthcare, you need to execute one immediately.  That includes young people.......remember Terry Schiavo.  And when you get into the Durable Power, get into detail.  List as many possible scenarios as you can imagine.  Talk to the person who will be making decisions for you if you become incompetent (and you should plan for exactly that.)  For those of us who do not die young, Bette Davis said it perfectly:  "Start getting ready now, old age is not for sissies."
  •  Time to lighten up.... (4.00)
    A friend's mother died a few weeks ago. A not quite typical old Italian lady.... 93....a fan of WWF.... quite the character. She was still handling cooking and much of the household chores for a full house.

    Her daughter (60 something herself) was at the hospital:

    "Ma, you have to get better. Who else is going to cook.  We need you."

    "Bullshit"

    Classic last words.  Gotta love it.
    You need a good exit line......

    •  Another exit line (none)
      A friend and classic gentleman of the old school died about 10 years ago. He was fortunate--affluent, remarkably healthy almost until the end.

      He was in the hospital only for the last day, and that evening he said (later confirmed to me by his wife): "Well, I guess it's time to cash in my chips."

      And he did.

      Death has a tendency to encourage a depressing view of war. -- Donald Rumsfeld

      by Mnemosyne on Fri Sep 30, 2005 at 09:49:31 PM PDT

      [ Parent ]

  •  You got your 4 and your Recommend (none)
    Excellent information.  I hope a lot of people see it and talk about it.
  •  Are you ever right! (none)
    My late father was a physician. His dying was the worst of both worlds: a years-long, miserable decline from congestive heart failure and Parkinson's, terminated by a final fatal heart arrhythmia.
    He knew the score as death approached, and so did my siblings and I. He, and we, all knew he could have been kept alive longer in an intensive care unit. Instead, he stayed at home, and he was able to eat one final ice cream sandwich an hour before he died. I don't think they would have let him have that, in the hospital.
    I have also observed that medical professionals very rarely inflict hideous, needlessly prolonged "medical deaths" such as you describe on each other.
  •  Great diary, thanks! (4.00)
    I live in Canada, where the Health care system has its problems but is publicly funded, and nearly everyone feels a sense of pride and ownership in it. My father died at 85, of congestive heart failure complicated by diabetes and pulmunary oedema at the very end, at the Institut Cardiologique de Montréal, one of the best cardiac care institutions in the country. Our family were allowed to stay with my father round the clock. My brothers and I took turns sleeping in a cot in his room at night. I was with him the night he died. He woke up feeling very oppressed, couldn't breathe, asked me to raise the back of his bed. I did as he asked and held him in my arms as he drew his last breath. After he passed, the nurses came in and pronounced him. I was allowed to stay with him, and the family gathered around him in the early morning. We made arrangements to have my father transported to our home so that we could spend some time mourning him in familiar surroundings (I guess you could say we held a wake for him -- our family is French and Irish). That night the funeral home came and took him away. The staff at the hospital were very supportive of all our decisions. The nurses told us that most of their patients die alone and that once they are dead, no one wants to have to deal with the body. In the old days people died in their homes with their families around them. But the present-day North American attitude toward death is unreal and goulish: to deny its existence for as long as possible and then when it happens, to hide it. My father was European and made us swear when we were young not to let the undertakers embalm him and tart him up with make-up. My Irish grandfather regaled us with tales of Irish wakes where the deceased was stood up against the wall by his buddies and given a drink. Thanks for speaking up on this.
  •  When is the right time? (none)
    I'm only 20 years old, pretty much beginning my adult life...the last thing I want to think about is how I want to die. Of course I don't want that scenario you describe, and is pretty much what my grandmother had to go through...a very long and painful yet futile battle with breast cancer. When is the right time to write those living wills and express the kind of healthcare you want when death is around the corner? It's really depressing to think about this.

    I HATE REPUBLICANS, HATE HATE HATE THEM!!!!!!!!! UGHHHHH

    by michael1104 on Fri Sep 30, 2005 at 08:30:39 PM PDT

    •  your youth (none)
      is something that is not quantifiable medically but makes a HUGE difference for your prognosis. At this stage of the game, you could recover meaningful fuction from almost anything. I'm not saying you will, but the potential is there.

      Write your preferences now. Give yourself a good deal of time to improve, describe how long you'd tolerate what type of mental state before declining further intervention. I'd like to go into this more in one of my next diaries about coma/vegetative state.

      Democrats are here to remind us that life is unfair. Republicans are here to make sure it is.

      by spitonmars on Fri Sep 30, 2005 at 08:51:04 PM PDT

      [ Parent ]

    •  living will forms (none)
      http://www.livejournal.com/community/daily_granola/8266.html

      Go here, find the forms, sign it.

      In some states you may need it notarized or something, I'm not sure.

      •  Do you have "Five Wishes" on there? (none)
        Some of those forms may not cover the nuances of different situations as well as it does.

        And after all, that's so vital. Five Wishes covers exactly what your relatives need to know. "If I'm in the following condition (detailed), I want the following steps taken (detailed)."

        It's incredible.
        http://www.agingwithdignity.org/5wishes.html

        In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

        by AllisonInSeattle on Sat Oct 01, 2005 at 01:28:40 PM PDT

        [ Parent ]

        •  not in my state (none)
          Thanks - 5 wishes doesn't work in my state, but I'm keeping the link.
          •  Even if it isn't 100% legal (none)
            it still gives a format for you to lay out what you want done so:
            a) Your DPOA (responsible person) knows what you want
            b) Your relatives know exactly what you want, vs wondering.

            It's written to help people and families deal with this. To protect them from over-use of invasive procedures, etc.  Whether it does satisfy legalities 100%, it's still a powerful tool to have on your side.

            PS
            You might write the PTB in your state, to ask them to make it legal there.

            In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

            by AllisonInSeattle on Sat Oct 01, 2005 at 02:20:09 PM PDT

            [ Parent ]

    •  Yesterday (none)
      Terry Schiavo was only in her 20s, I believe, when she went into a persistent vegatative state.

      I did my mom's when she first came down with cancer (that was eventually cured) and it isn't necessarily that difficult, but my wife and I had ours done by an attorney. Along with wills, the whole thing was less than $250 - just the health care part would probably be cheaper, as the forms are pretty much boilerplate/fill in the blanks.

      We all go a little mad sometimes - Norman Bates

      by badger on Sat Oct 01, 2005 at 12:06:21 AM PDT

      [ Parent ]

    •  Now (none)
      And on a regular basis hereafter.  I know.  I put it off for years.  All of a sudden, the fourth decade was staring back at me.  

      Look at it this way, you don't need to plan your funeral, just make your wishes clear to your nearest and dearest (especially the members of your family on the same page as you--don't assume, ask).  Revisit it ever five years or so or when your outlook changes (you do get to change your mind as time passes).  Or if you get married (or especially if you cohabitate long-term).

      Since I can't marry to my partner, we've gone the Durable Power of Medical Attorney route, and I've made clear to my parents and sibling that he's the one who's making the medical decisions if I'm incapacitated (my family is on the far coast and we talk frequently but are not especially close).  

      You've only got 60 to 80 years left, kiddo (possibly a bit more if you've got good genes, access to modern medical care, don't do stupid things, and take reasonable care of yourself).  And I hate to break it to you, but it starts moving a lot faster after 20.  Try not to think of it as depressing; think of it as part of becoming an adult.

      "I don't bear a grudge. I have no surviving enemies."

      by usagi on Sat Oct 01, 2005 at 02:11:55 AM PDT

      [ Parent ]

    •  It's like sticking a finger in the right-wing's (none)
      eye to fill out the forms. I can't tell you how empowering it is.

      NO I don't want your stinkin' feeding tube. NO I don't want a media circus around my bed. NO i don't want some stranger-to-me wackos chanting Christian songs around my bed/residence.

      Trust me, you'll enjoy it. Get the form here.

      http://www.agingwithdignity.org/5wishes.html

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Sat Oct 01, 2005 at 01:38:51 PM PDT

      [ Parent ]

  •  Good medicine, indeed (none)
    Thank you for an writing an eloquent diary. Nobody likes to think about end of life issues.  As a medical sonographer almost three decades into my career,  I can't agree more with the
    wisdom of your words. Daily Kos readers, please
    consider the good doctor's advice.
  •  hope I die before I get old (4.00)
    My husband is a surgeon and we've both suffered the misery of watching loved ones die in hospitals.  For years we've been lamenting the painful, prolonged death process inflicted on people, especially the elderly, by modern medical care.

    We've "joked" about how when we're at retirement age, we'll take up skydiving, shooting up heroin, eating fugu, etc.

    The other option is to store up enough of a personal store of morphine etc. to take ourselves out when it gets to that stage.

    Our medical care is fantastic in all ways except for managing the way people die.

    New Orleans will never die

    by hrh on Fri Sep 30, 2005 at 08:38:47 PM PDT

    •  Its not great (4.00)
      in helping people live with disabilities either.  Not hard to understand, I suppose...up until recent history, you got sick and either you died or you got better...now we keep people alive with chronic illness...which is good!...but the medical community and social agencies haven't kept up in caring for us.  This is something that really needs addressed.
      •  yes (none)
        But I think it's the same thing that's evidenced in our society's view of poor people.  As long as they're breathing, that's what we care about - we don't care about their quality of life.

        I wouldn't blame this on the medical professionals - on the whole, they really do care about their patients and want to do the best for them.  

        HMOs, now that's another story.  We know one truly excellent and compassionate surgeon who quit the teaching hospital where he worked because the HMO that bought it was rejecting his orders for tests for patients, etc.  He would request something and some asshole pencil-pusher would say "Sorry, we can't do that, we don't think that's necessary."  This surgeon now works for the VA.  Imagine someone choosing to work for the VA instead of a university hospital because the management was better!

        New Orleans will never die

        by hrh on Fri Sep 30, 2005 at 09:19:24 PM PDT

        [ Parent ]

        •  There are many caring doctors. (none)
          However, there are also those who don't mind washing their hands of those who can't be "cured" or those who's cases can't be used to further their own theories.  

          As stated earlier by the diarist, there is a language/communication problem.  Gotta get passed that because it leaves patients feeling disrespected and patronized.  It leaves us vulnerable as well...it doesn't take many instances of feeling as if you are being dismissed before you become reluctant to seek care.

    •  Do you know how fortunate (none)
      you are that you can even think of storing up morphine as a release?

      The rest of us don't have that option -- you have a kind of freedom in imagining all this that we don't.

      Nor do 45 million of us have the option to take an antibiotic when we need it, really (no health insurance).

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Sat Oct 01, 2005 at 02:04:32 PM PDT

      [ Parent ]

  •  Those diaries. (none)
    Bring 'em on, please.
    Recommended. Subscribed.
    My blood is boiling.
    Winter is coming on.
    Need to keep warm.
    Lay the action lerts on us, if we need to send anybody any mail.

    I'ts too wet to work. Let's buy a DVD.

    by emmasnacker on Fri Sep 30, 2005 at 08:42:57 PM PDT

  •  very informative (none)
    thanks!

    There ought to be a science of discontent.

    by dreamsign on Fri Sep 30, 2005 at 08:51:34 PM PDT

  •  I've got my request (none)
    If I'm incapacitated, I want the care providers to mainline Heroin (may substitute Dilaudid) to me on regular and frequent schedule.  

    Incapacitated is defined as whenever I'm admitted to a hospital and am miserable.

    More seriously (although the above is dead serious), what a great diary.  I look forward to your entire series.

    "The care of human life and happiness and not their destruction is the first and only legitimate object of good government." -Thomas Jefferson, 1809.

    by Subterranean on Fri Sep 30, 2005 at 09:05:27 PM PDT

  •  Seven years ago (4.00)
    my mother died. She had had a stroke and spent months recovering enough to be discharged to a nursing home. Even when she "made" the final decision to stay there rather than trying to return to her sheltered accommodation, it was obvious to me that she was very unhappy with the loss of independence after being self-reliant for much of her life. She had effectively brought up two one-parent families. I was the child of her second marriage and she had me at the age of 40.

    When she had a second major stroke, she told the staff that she did not want to go back into hospital and virtually resisted before she lapsed into semi-consiousness. The hospital staff were very frank with my sister-in-law and brother before I got there. The alternatives were to let her go or  treat very aggresively in the hopes that she might recover some function, but that would be a lot less than she had even before the second stroke. By the time I got there she had been made comfortable and was on a diamorphine pump with an on-demand boost.

    Although we had not discussed it before, it was obvious that mother wanted to go. She had lost interest in eating (possibly a result of a series of mini-strokes) although liked the occasional treat that my sister in law took her in. Once I heard about her being taken to the ambulance, I agreed that they had made the right decision. I also had a word with a doctor and made it very clear that we wished that she had not further discomfort or distress, even if the medication to do that brought the end nearer.

    One thing I did have to insist on was that the nurses should re-fit her hearing aid. She was very deaf but most will know that hearing is one of the last senses to "cut through" the fog of medication and semi-coma. The night staff were excellent - I was a mother's bedside for about 30 hours with a few short breaks for coffee. I singled them out as they are frequently the most familiar with dying as the many elderly die in the early hours. I was able to make sure mother was comfortable at all times as far as I could. The only exception was when I asked that a nurse dampen her mouth - she occasionally got so dry it became obvious it was starting to worry her. I was not too pleased that they busied themselved handing out refreshments to the visitors and other patients before coming to see her and did admonish the nurse in charge that I thought "comforting the dying was more important than giving out tea to the living".

    All through the time I was with her I was talking and re-assuring her that everyone would be OK and we would not let the doctors do anything she did not want. Although she could not speak she was calmed by that and some of the relaxation visualisations I was giving her about relaxing in the warm sun in a flower-filled garden.

    Her moment of dying was in some ways very beautiful. The pain of the recent years drained away and she became the lovely 30 year old I never knew. After I had called my sister in law to let my brother know she had died, the nurses asked if I wanted to see her body. My response was that it was not necessary as she was not there but "in here and here"  - indicating my heart and head.

    Apart from encouraging everybody not to let their loved ones die without them, even if it means over-riding the hospital's rules (I did not by the way) I would like you to draw from this a reminder  about ensuring they have things like hearing aids to help any communication - even if it is for your peace of mind.  

    This happened in England and there is a bit of doggerel that serves as a good rule for doctors in these situations:

    "Thou shalt not kill
    But must not strive
    Officiously to keep alive"

    •  So Similar (none)
      I posted my response just about the same time you did and was very struck by the similarities.  My Mom had me when she was 41 and died 7 years ago and I too found it a sad but beautiful and somehow enriching experience.

      Your Mom was lucky to have had you there to advocate for her.  Thank you for sharing.

  •  Thank You (none)
    Yours is a voice we need to hear, and hear frequently.  I would also like to put in a word for the incredible folks of Hospice, who I found can be helpful sounding boards in making tough decisions.  

    My Mother died about 7 years ago after a long period of Alzheimers, complicated by severe osteoporosis.  We were fortunate--my sisters and I were able to talk openly and were comfortable with our assessment that Mom would not have wanted extraordinary care.  

    Even so, the number and types of day-to-day care decisions we had to make could be overwhelming.  After her second hip fracture, she was obviously failing and the nursing home sent her to the emergency room.  The attending resident wanted to "admit" her, but--Thank heavens, her Primary MD said no. I will be forever grateful to him for that decision.  

    Mother died a few weeks afterwards, but she died comfortably in her residential room in the Nursing Home where she had been well cared-for for several years.  I was right beside her, and there was not one tube in those beautiful hands or arms or neck.  Perhaps she could have survived for a while longer if we had decided to admit her to the hospital, but she would not have LIVED longer...survival and life are not the same.

    Just a few hours before Mom died, her PCP got cold feet and said "Well maybe we should admit her."  I immediately went to the head nurse at the Home and challenged that, with "I think Andy is trying to cover himself.  This is just not right." We resolved it quickly, but it is sad to think that an MD who had all the right instincts felt the need to "cover" himself.  

    I don't blame him for that, he has to worry about legalities, etc. I am grateful that I had the support of a "hospice-centered" nursing staff to advocate for me when I pushed back and that he backed off immediately when he understood our wishes.  (We had not yet officially signed over to Hospice...mother actually died before we did that, but we were following the principles.)

    Keep writing.  Keep communicating.  We will all be facing these issues.  

    Thank you again.

  •  Unfortunately, even avanced directives (none)
    don't count for much in nursing homes.  My grandma was 89 and was suffering from dementia and having falls.  She was put on a rehab floor of a hospital for a few weeks because she insisted she could take care of herself and was going back to her townhouse.  When it became obvious that she was incapable of living alone, she went to an assisted living facility.  She deteriorated even more and ended up in a nursing home.  (My mom had several surgeries on her shoulders and couldn't care for her and my grandma had been so nasty to my aunt that there was no way she would take grandma in).

    Even though grandma had a living will stating that no extra-ordinary measures were to be taken to prolong her life, the nursing home just blew it off.  A few days before her death, they inserted a naso-gastric tube.  My mom had power of attorney and they did not inform her or have her sign the waiver (I'm blanking on the legal name for it).  She died in her sleep a few nights later.

    It was so hard on my mom to go through that.  She was really pissed at the nursing home.  I told her if she wanted to jerk their chain, to call her lawyer and have him request the paperwork authorizing the insertion of the feeding tube.

    I wasn't using my civil liberties anyway.

    by hoosierspud on Fri Sep 30, 2005 at 09:51:09 PM PDT

    •  This would not have happened..... (none)
      In Washington state. Here, the advanced directives overrides the family, even. I worked in nursing homes for 15 years here, and have had to tell families that wanted "everything" done that their mother/father's advanced directives were what we legally had to follow. However, this change was only about seven or eight years ago.

      Bush lied, people died....in New Orleans.

      by SleeplessinSeattle on Sat Oct 01, 2005 at 03:00:44 AM PDT

      [ Parent ]

      •  This happened in Indiana. (none)
        I've heard nursing homes don't like advanced directives because of the "save the patient at all costs" mentality in this society, and also because of money they recieve for each procedure they perform on patients.  They were giving my grandma speech pathology sessions because she was starting to mumble and physical therapy.

        I wasn't using my civil liberties anyway.

        by hoosierspud on Sat Oct 01, 2005 at 07:54:52 AM PDT

        [ Parent ]

  •  Agree With This Diarist But (none)
    Larval and pupal stages are distinct.  But what does that have to do with an understanding of life?

    Fox News is a propaganda outlet of the Republican Party - DNC Chair Howard Dean

    by easong on Fri Sep 30, 2005 at 10:07:58 PM PDT

  •  oh, this is such a hard thing (4.00)
    My natural mother died suddenly and was just gone when she was 36. My father had cancer and they kept cutting and cutting and he was in horrible pain and finally he dwindled away. My step-mother had several severe strokes and had to have constant care for dementia for twenty years. Healthy as a horse. I've got a living will and we've had frank family discussions about the subject. They give me a ticket out of town, I'm putting on my hat and leaving.

    But.
    There's always a but.
    My youngest daughter has cardiac sarcoma. I don't have to tell you what that means. Just ended the second round of radiation, next up, a second round of chemo. Fortunately, (I guess fortunately), her heart will just stop when it can't go anymore and there won't be the same thing that my father had to go through.

    I can't bear it. Even though she has a living will, in my heart, I want anything --anything -- that will delay the inevitable. But I think of Terri Schiavo and it was so very very wrong to keep her alive that way.

    So, not an easy thing and always one that has to be only for the people involved to decide on.

    utahgirl

    •  nio (none)
      I'm so sorry reading your post.  The death of one's parents is sad but an expected part of life.  The death of one's child is unfair and tragic.

      "Well, if crime fighters fight crime and fire fighters fight fire, what do freedom fighters fight? They never mention that part to us, do they?" --George Carlin

      by DoDi on Sat Oct 01, 2005 at 12:10:50 AM PDT

      [ Parent ]

  •  Quite a coincidence that you wrote this (none)
    as my wife (PGY1 IM, NY hospital covering vent team this past month) just talked to me (just a techie) after coming back from work about her day. DNI, DNR stuffs and complexity like you said. But mainly, she wants us to do the Health Care Proxy thing ASAP.

    What I told her is "I'm not afraid of death, I'm just very afraid of pain. The rest is up to you." Since I've lived my life on earth as if tomorrow is my last day, there is no day too early for me.

    Being an immigrant from Asia (11 years in the States) who is about to emmigrate, I've noticed a stark difference backhome and here. I'll tell my long story in a diary some other time.

    Anyway, I would rather live 60 years kicking, dying even with a simple flu then 80 years with the last 20 years on the ventilator with a feeding tube down my throat.

  •  Thank you (none)
    For a wonderful, if heartbreaking diary.  I say heartbreaking because I am in tears after reading it and then most of the comments.  

    I couldn't help but to think about my own mom and her dying.  Thankfully, everything was discussed with all of the family ahead of time and hospitals were not involved.  We tried to stick it out at home but the last few days, simply could not and already had hospice arrangements.

    You will be one of the good ones as you progress from intern to resident to attending.

    Thank you again.

    There is danger from all men. The only maxim of a free government ought to be to trust no man living with power to endanger the public liberty.--John Adams

    by tvb on Fri Sep 30, 2005 at 10:33:21 PM PDT

  •  my family... (none)
    ...has always had a realistic matter-of-fact attitude toward death, combined with faith in a peaceful hereafter.

    My parents were quite clear and explicit with us about "no extraordinary measures."  When my dad's time came, we understood what he wanted and we carried out his wishes.  He had suffered heart failure and was on a respirator & unconscious, with a prognosis that recovery was highly unlikely.  He was on the machine for less than a day before it was disconnected, and he died within minutes.  When my mom's time is called, we'll do likewise for her.  

    My brother and I feel the same way about our own deaths.  

    What I find absolutely outrageous is the FDA attitude about pain medications.  It is deeply puritanical: that pain and suffering are somehow noble, and that morphine etc. are "bad" because they somehow cheat on God's intentions or produce "pleasure" (pain relief) at a time when one "should" be suffering.  Realistically, what's it going to take to reverse that attitude?  Is the regulatory regime any less harsh for hospices?  And what about other types of pain relievers, e.g. general anaesthetics, disassociatives, and so on?  

    Here's a question:  When I finally get health insurance (pending), I intend to tell my doctor(s) to be quite frank with me in the event of terminal or life-threatening illness, and they're welcome to use tech jargon and speak in terms of probabilities, and I'll ask for explanations as needed.  Question is, is that sufficient or are there some "codewords" doctors listen for, that make it clear to them that the forthright approach is appropriate for a given patient?  

    •  Morphine is a gift from the Creator (none)
      A truly lovely plant, called popaver somniferum, naturally produces a substance called opium. When ingested, opium is metabolized in the body as morphine.

      A perception of morphine as something unnatural or outside 'God's intentions' is simple ignorance.  There's no clearer indication of these intentions for easing our pain than the beautiful opium poppy.

  •  living wills etc - here are the links (none)
    Here are links for living will and power of attorney forms and procedures for each state:
    http://www.livejournal.com/community/daily_granola/8266.html

    I signed one during the Terri Schiavo debacle.  It was very depressing signing my life away - but it was all for the best I suppose.  If I get to that situation, I won't know the difference, and at least my family will have instructions.

  •  End of life issues (4.00)
    I am a medical oncologist, in practice for 15 years. I have to say you bring up excellent issues.

    I try very hard to initiate end of life discussions with my patients EARLY in their illness so when the time comes for us to concentrate on "comfort measures only", it is something we have talked over several times. EVERYTIME I admit a patient to the hospital we have a discussion about "code status" and whether they would want to be subject to a "full court press".

    If I have a patient who has metastatic cancer likely to end their life in the next 6 months or so, when we discuss Do Not Resuscitate orders and they are undecided,  I am explicit in what it is like to be subjected to CPR, intubation, and the like, and I think my patients and their families for the most part appreciate the information and ability to make informed decisions.

    It is very difficult for some doctors to pull back the automatic medical support for patients.  It is unnerving at first to write orders in the chart to stop antibiotics, IV fluids, tube feedings, tell the nurses to stop disturbing patients for vital signs and to write explicit instructions for the nursing staff to make sure the patient is not having pain.

    Narcotic infusions are the dying patient's friend.

    The most difficult cases I have seen are people who do NOT have cancer, but have chronic degerative illnesses, strokes, lung or heart disease, and have primary doctors who just don't/can't/won't address end of life issues. So patients can be "rescued" from one life threatening crisis to go home with marginal quality of life only to get into another crisis soon thereafter. I used to have to admit these patients to the hospital if their regular doctors were not around and often I was the first one to bring up the issue of "do not resuscitate" with the patients and their families. Frequently that hospital admission would be the last, as they were able to discuss issues and make decisions to stop the cycle of futile "treatments".

    One piece of advice I would give family members of people in nursing homes is to check the facilities records for the patient's  CODE STATUS. Often I discharge patients to nursing homes after having discussions with them that confirms they do not want to be resuscitated, and when they get to the nursing home, the nurse or clerk who fills out the papers somehow scares them or confuses them into saying they WANT to be resuscitated. This has led to much unwanted care, especially ambulance personnel intubating patients before they get to the ER, then the few days in the ICU (or hopefully less) before the "support" can be withdrawn and the patient is allowed to die.
    That can be avoided by making SURE that the paperwork at the nursing home matches what the patient really wants. If it doesn't raise hell with the nursing home until it does.

    Looking forward to some good discussions here.

    •  This is an excellent point (none)
      My mother was in exactly this situation.  She was still in the early stages of dementia at the time, and had been in the hospital with pneumonia.  She had a DNR order in the hospital, with which she was in agreement after I sat down with the doctor and we discussed what resuscitation involves and the likely outcome in someone of her age (mid- to late 80's).  But when she got taken to the nursing home as a temporary stage of getting stronger to go back home, they simply asked her (without me being present) whether she would want to be resuscitated if her heart stopped.  She had forgotten the conversation in the hospital, and replied, "Of course," and they got her to sign the form saying that she wanted to be resuscitated.

      After I found this out, I insisted that the social worker come to her room with me, reminded her of what had previously been explained to her about the likely outcome of resuscitation in somebody of her age and condition (the chances of severe brain damage are very high and the likelihood of the recovery of much independence are very low), and she said, pretty much horrified, "Of course I don't want it!"

      I really don't think it's so much a matter of nursing homes deliberately scaring people into asking for resuscitation as it is of getting fully informed consent, which involves taking the time to explain the odds of recovering any kind of reasonable function and independence.  I'm convinced that if that was adequately explained to most patients and families, very few octogenarians would be without DNR orders.

    •  Thank you for writing this.... (none)
      I think you are an unusual oncologist. I have known so many who put their patients through hell because they can't give up. My next door neighbor had so much cancer in her bowel they had to do a colostomy. She went through months of chemo that made her very ill, and then was told she still had cancer and needed more. She told them to take a hike, and I am glad to say she is still around six months later and doing well.

      Bush lied, people died....in New Orleans.

      by SleeplessinSeattle on Sat Oct 01, 2005 at 07:51:08 AM PDT

      [ Parent ]

  •  Morphine (none)
    We were very clear from the start about DNR status for our dying mother.  We said we wanted everything done for her to be made comfortable  and that no extra-ordinary measures were to be taken to keep her alive.

    When the end was obviously near the nurse attached a device to her morphine drip.  She told us that our mother was comfortable, but if we noticed any discomfort that we could push a button on the device and it would increase the morphine.

    Then she left the room.

    My sister and I sat with our mother and after a while we noticed she was experiencing some discomfort.  At that point we took the device in both our hands and pressed the button.

    My mother died peacefully shortly afterwards.

    I'm very grateful to the nurse and the hospital for the dignaty with which my mother was allowed to pass on.

    "Well, if crime fighters fight crime and fire fighters fight fire, what do freedom fighters fight? They never mention that part to us, do they?" --George Carlin

    by DoDi on Fri Sep 30, 2005 at 11:58:31 PM PDT

  •  I work in a nursing home....... (4.00)
    After a nice career in Accounting I moved to the country and the closes place of employment is a nursing home. 2 mile drive. I never wanted to be a nurse but there was an opening on the activity staff. I took it and you know what, I love all the people there. And BTW, they are no longer all old. But that is not my point. It is death. When my Mother was transferred to a nursing home in California, I knew she was dying and although I did not want to face that moment, a nurse told me straight out, she is dying. We had given her a choice of having pain drugs or not. She had decided on the drugs. We were told it would be within 2 weeks, she died in 2 days. My brother and I did not know what to expect and we could not find information on that. Now I know.  

    When everyone was carrying on about how can you starve Terri Shivo, I was explaining that without the feeding tubes, most people die that way. They stop eating and drinking water and eventually the body just stops working. The morphine hastens the end.

    We have a young accident victim who has been there for a few years. She is more alert than Terri. She had told her Mother that she never wanted to be like that. Her Mother told me that one day. But her Mom refuses to let her go waiting for a miracle. Maybe we need to have in the living will that if we die on the operating table and they bring us back after a minute or two, LET US GO. Breathing and on a feeding tube lying in a chair or bed is not quality living. Or maybe that is how we explain it. If it is not quality living, we don't want to stay around.

    Many people do not like going to nursing homes. We have many people who participate in every activity, socialize with other residents, and although in a wheel chair, still have a quality of life. Tonight I stayed late so that a few could watch the Yankees-Boston game on the big screen TV. We have a lot of activities other than Bingo and we really try and talk with each resident. For many, we are their family and in some cases, their only family. Pizza night with near-beer and music is always packed. BBQ's, outdoor strolls, trivia  games, and parties are also a favorite. This is what I mean as to quality of life. And with MS residents or quad's, they like their own PC's in their room. Yep, when we get up there, you know we will want the PC's. A new era is upon us.

    So I know what you mean about not the way to die.  We have the people who do not speak, open their eyes, and sleep 23 hours a day and live on a feeding tube. This is not quality. This is the death I do not want. This is the scary death. And I suspect if you had asked them before they got this way, they would have told you they did not want to live this way either. But, this is the way it is and this is what the family wants.

    So please, as suggested, be very detailed in what you want. Maybe a video would be good also. In your own words, state what you consider your quality of life. Be specific on what is acceptable and what is not. Being able to enjoy a ball game, soap opera, politics, etc. compared to being a rag doll. Because being a rag doll is what you become when you are no longer in control of your body. Be prepared because as stated before, not all our residents are old.  

  •  One of my best friends... (none)
    ...is currently in the midst of a family struggle over what to do about her 93-year-old grandmother.  After her last stroke, it was clear she would never recover, but her fundie relatives want to keep her on artificial life support.  The struggle is tearing the family apart -- I don't see the wounds caused by this ordeal healing anytime soon.

    Both of my parents died quite young and unexpectedly (Mom at 43 and Dad at 62), so I never had to address this issue personally, but it's quite a matter of concern in my boyfriend's hardcore Catholic (he and his brother aren't, but everyone else is...) family, which includes his late 60s parents and all four of his grandparents, ranging in age from 89 to 97.  I can see all hell breaking loose in his family over this, and, of course, NONE of the parties involved has (or wants) a living will.

    "I wish I could drink like a lady; I can take one or two at the most; Three and I'm under the table; Four and I'm under the host" -- Dorothy Parker

    by asskicking annie on Sat Oct 01, 2005 at 12:29:08 AM PDT

  •  Thanks for discussing this (none)
    I'm only 25, but Terri Schiavo has made me start really thinking about these issues. I'm an avid skier and drive in Bavaria, after all...

    Young Kossacks, we are not invincible, and should not leave our parents with the possibility of having to guess what our wishes would be if we were to have some horrible accident or sudden illness. It wouldn't be easy for them, no matter what, but writing it down and making it official might give them some strength and comfort that they are doing as we wish.

    Does anyone know what I need to do to cover myself while I'm living in Germany?

    I have lost three grandparents. The first was my paternal grandfather, who died a hospital death. It was awful him and it was awful for us, especially my grandmother. My "battle-ax" aunt was the one who possessed the strength and belligerence to get him unplugged, and her gentler sister, my favorite aunt, explained to me that Aunt Mary did what needed to be done, which is not always pleasant (I was 15).

    The next was my maternal grandfather only a few months later. He had been ill for the previous 18 months, and was finally really starting to go. He was dead-set against dying in the hospital, so his doctor recommended getting Hospice involved. They were wonderful. They taught my grandmother how to care for him, visited a few times a week to assist with bathing him and doing stuff my grandmother couldn't and even provided some sort of tablet that had to be carefully accounted for (morphine, I'm guessing now). He died in his sleep, in his bed next to my grandmother, with loads of relatives and friends nearby.

    My maternal grandmother died the way all of her friends want to die: cardiac arrest the day after her best bridge game ever, without any intervention whatsoever. Apparently, she laid down on her couch for her afternoon nap and just didn't get up. It was sudden, which was awful for me at the time, as she was the person I was closest to, but once I got a bit of perspective, I was grateful that she didn't have to really deal with death at all.

    That which you do unto the least of these, you do unto me - Matthew 25:40

    by A Texan in Maryland on Sat Oct 01, 2005 at 12:38:37 AM PDT

  •  A suggestion (none)
    It is very laudable that you should be considering these matters and making your intentions clear now will cause a lot less grief in the future.

    Despite some of the tragic circumstances we have heard of here, it is most likely that deaths of people in your age group will be through accident or injury rather than illness. You may want to consider whether in those circumstances you would wish to be an organ donor after your death. If so, conveying your wish to your next of kin is important as it will save them further anguish in making the decision. As well as saving others' lives, you could well give relatives, especially parents, a sense that a sudden death was not entirely in vain.

    •  Hmmm... thanks for reminding me (none)
      It's on my ID card that I'm a donor, but I haven't addressed the subject with my parents.

      Where can I find information on living wills and such for European countries? How does it differ from the States? Would something I drew up in Germany be valid in Britain, if heaven forbid, I would have some sort of accident there (e.g., not looking the proper way when I cross the street...)

      That which you do unto the least of these, you do unto me - Matthew 25:40

      by A Texan in Maryland on Sat Oct 01, 2005 at 01:38:42 AM PDT

      [ Parent ]

  •  I can't read the comments or comment myself... (none)
    ...for my own Goddamned mental health.

    But you've hit every nail on the head here, Dear Sir or Ms. and kudos to you for having done that.

    Thank you.

    "...And bunnies would dance in the streets, and we would find life on Mars." -Peter Singer, Brookings Institution

    by zentiger on Sat Oct 01, 2005 at 03:09:59 AM PDT

  •  My recent experience as a hospice doc. (4.00)
    Schiavo changed many people's views. Sure, I live in Texas, so your results may vary, etc., but I've noticed that lots of religious conservatives now are fairly adamant about aggressive care, even in the face of terminal or near-terminal disease.  These are by and large people for whom the ethical issues were clear, before they became couched in political-religious terms (see the stories of Tom Delay's family member who died from head trauma, or Bill Frist's previous views on the benefits of declaring anencephalic babies brain-dead).  

    Short answer: don't assume your family sees eye-to-eye with you.  Also, don't assume they feel the same as they did a year or two ago.

    •  Very good point (none)
      "Don't assume your relatives agree with you."

      After going through decisions about my mother's death with my brother, I realized how FAR apart we were. I got a great living will/ end of life directive, filled it out, and have copies in 3 states with people who're willing to step up to the plate to carry out my wishes.

      I also mailed mine to my brother, plus a blank one. I got on the phone, and tearfully asked him to fill his out and get it to a friend. Because I could do what he'd want, but it would tear me up. I wouldn't want to ask for treatments that revolt me, on his behalf.

      In the meantime, what is amazing to me, is if you're a strong Christian, what's to fear about dying? I miss the point.

      PS Sorry you're having to deal with this sea change. At least from my perspective, it'd be tough.

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Sat Oct 01, 2005 at 03:52:16 PM PDT

      [ Parent ]

  •  I too, am a nurse.... (none)
    I worked for thirty years, much of it in nursing homes, until I was incapacitated by arthritis. I have also worked occasionally in hospitals, and seen them pouring blood into 95 year olds I could see would be dead that day anyway. I always wondered if that blood would be needed to save some 18 year old that was in an accident.
    I have watched people like Terri Schiavo exist for years. I do not want that for myself. If I can't eat pizza and ice cream, let me go.
    I helped two of my grandparents die, one by keeping her home at her request, and the other by keeping him comfortable in a nursing home with beer and whatever. I have watched a lot of other people's relatives die, too. I had hoped that my parents would die in a plane crash on the way home from Hawaii, but that didn't happen. My Mom died suddenly of a heart attack, and I'm glad, because Alzheimer's ran in her family. My dad is still alive, and active at 86, although he put us through 6 weeks of hell last year. Apparently his physicians wouldn't believe an 85yo could have gallbladder disease, although I had been telling him that for a month from 1500 miles away. Go figure. Dad has a very specific advanced directive, and believe me, between my right wing brother whose best friend is a nurse, and me, Dad won't get anything he doesn't need.
    I am 55 now. I am disabled. I don't have any children or a partner. For god/dess sake, don't prolong my life, or increase my pain.
    Hospice is great. They can and do make sure people are comfortable. The ones who suffer the most are people like me with chronic pain, which is not from a life-threatening disease. The only time I am really comfortable is when I take narcotics, but no one will prescribe enough of them for me because of the DEA. This is stupid. I take Celebrex now, which might give me heart problems. Or I could take one of the older NSAIDs, and would probably end up with a bleeding ulcer. It's nuts. The only thing I agree with my libertarian brother-in-law about is ending the war on drugs. Legalize and tax the damned things. You don't see many moonshine stills these days, do you?

    Bush lied, people died....in New Orleans.

    by SleeplessinSeattle on Sat Oct 01, 2005 at 03:30:23 AM PDT

  •  I have an advance directive (4.00)
    No life sustaining treatment in case of permanent incapacitation (big long medico-legal description of vegetative state, brain damage, etc.)
    There's a codicil in my AD that states that for any elected official who wishes to supercede my wife as my proxy may do so only after fellating me to orgasm in the presence of three witnesses and a video camera.  After all, anyone willing to give me a hummer on TV probably DOES have my best interest at heart.

    In prison, Tom Delay will no doubt be called 'the Hummer' by his fellow convicts.

    by soonergrunt on Sat Oct 01, 2005 at 03:34:53 AM PDT

  •  Up close and personal experience (none)
    I wrote a diary about people not respecting my grandfather's DNR.

    http://www.dailykos.com/storyonly/2005/9/7/10911/78323

    He has since died.  He waited to get out of the hospital and died in the assisted living facility.

    We had all the paperwork, and it didn't matter.  They brought him back anyways.  

  •  My grandmother died on September 19th (none)
    at home after after refusing futher hospital treatment. She had been living alone with us helping her out for the past 11 years since my grandfather died. He had gone through what was described above, after losing his voicebox to cancer surgery and enduring many painful procedures over several years. One of his more enlightening quotes from this period was "They call this living?". He died alone, and incoherent, in a building full of strangers. My grandmother did not want any of the above and planned well for her passing by getting her will and legal information in order and letting us all know what she wanted in any event.

    She went to the hospital with trouble breathing two weeks before she died. They ran some tests and collapsed a lung in the process. It was determined that she had lung cancer and she refused further treatment. She came home a week before she died and was cared for full time by my mother and me. We enjoyed that last week, she was alert and coherent up until the very end. Our family and friends came to visit and spend time with her and she enjoyed it very much. She died quietly while sleeping with my mother by her side. She was never a burden and her suffering was not great which is exactly what she wanted.

    Your article is a warning to us all. Have your will ready, make your wishes known, and trust a loved one to carry them out. I am still young and not worried about death, but after seeing how my grandfather died compared to my grandmothers passing, I have taken the steps to have control over my own death. Not all of us can be lucky enough to let our wishes be known when the end is upon us.

    "corporations have been enthroned and an era of corruption in high places will follow" Abraham Lincoln

    by Thirsty on Sat Oct 01, 2005 at 07:31:31 AM PDT

  •  DNR DNR DNR (none)
    Great post, I agree with all.  I am a nurse and deal with this everyday, you describe the process perfectly.  I have often compared how we die with other cultures, and we are barbaric in comparison.
    Should Grandma be made a DNR?  You decide.  With a DNR order, she will be allowed to pass gently. Without it, we will run into her room, rip off her gown, and under glaring light pump on her chest and break all her fragile ribs. Tubes and catheters will be forced into every orifice and we will even make new ones. A big tube is shoved down her throat, she is shocked again and again with electricity.  If she survives this brutal assault, she may live another day or two, and then go through the torture again, and again.  Families who force their "loved ones" to endure this are the most selfish and cowardly kind. They do it for THEMSELVES, not for grandma. They do it because it is THEY who fear death, not grandma. They do it because their main concern is about THEM, not grandma. Oh, the horrid stories I could tell.
    Compare to the gentle passing offered in other cultures, of prayers and chants and incense. It is disgusting.
  •  Topical (none)
    Nice diary. I'm sitting in the hospital with my wife who is in stage 4 Non-Hodgkin's Lymphoma and her only hope is to have a stem cell transplant. I know the odds but I'm keeping this information from her as she doesn't need the extra anxiety.

    Passing on should be as dignified as possible as it will happen to every last one of us, including those idiots from the Schievo cult. Thanks for the guidance. My wife is 45.

    •  Dear Stork, (none)
      I came late to this discussion, and saw your comment first. I have been in your shoes with relatives and friends, but never a spouse. I can't imagine the feelings and frustration you must have. I am so sorry for you both. I'd like to say that you are not alone, but in times like this, you are so alone. I wish I could send you courage and strength in your ordeal, but I know that I can only really offer my heartfelt thoughts. Please keep us abreast of your situation.

      I *gladly* donated to ePluribus Media. Support citizen journalism!

      by nancelot on Sat Oct 01, 2005 at 10:43:01 AM PDT

      [ Parent ]

  •  Great diary (none)
    My family physician husband deals with this all the time.  The patient has told him they want no heroics done but the family can't accept it and demand everything be done.  When they finally die many sue. I'm talking about patients in their late 80s and 90s.  This is oftentimes why we torture the dying.
    The American way of death is not about preserving life it's about prolonging death.  I can't understand why Americans can't accept death esp. those who claim to be religious.
    Ran into someone I hadn't seen in 7 years.  Told me his 91 yo mother had just passed away, complications of a fall (which is probably how a huge number of elderly die btw).  His main remorse seemed to be that he didn't sue!  I said you've got to be kidding, you don't think she lived long enough?  .  I told him he should be happy her death wasn't prolonged.  If she hadn't died from this maybe she would have been kept alive long enough to die from something more painful.  He was just pissed he didn't sue, because if anybody dies, someone is at fault.
    •  I agree with what you say. (none)
      And most family physicians are the best at dealing with these issues honestly.  However, the problem starts when patients and their families aren't honestly told what probable outcomes will be and/or feel that they are being brushed off when they ask questions or make suggestions.  This is frustrating and does create the kind of anger that leads to lawsuits.  You aren't likely to sue a doctor that you respect and who has treated you well....unfortunately some, especially specialists, seem to be asking to be disliked.
  •  Wendell Berry (none)
    While looking for some of his writing on another aspect of fidelity, I ran across this....
    The medical system is perceived as clearly outside the bonds of rural family and place. Like others who "serve power," not love, the medical profession is suspect, especially when technologies begin to cloud the "art of medical mercy." Berry explains this position through the voice of the old man's family lawyer: "Once the machinery gets into it, then the money gets into it. Once the money is there, then come the damned managers and the damned insurers and (I am embarrassed to say) the damned lawyers, not to mention the damned doctors who were there for the money before anybody. Before long, the patient is hostage to his own cure. The beneficiary is the chattel of his benefactors." (p. 174)

    Berry's contrast of "good guys/good place--bad guys/bad place" can seem simplistic at times, but overall the story is compelling and can be a useful vehicle for discussions about ethical issues in the use of life support technology.


    If you are unfamiliar with Mr.Berry's writing, google, you have a real treat in store.

    I'ts too wet to work. Let's buy a DVD.

    by emmasnacker on Sat Oct 01, 2005 at 11:24:28 AM PDT

    •  Thanks for this. (none)
      It does actually help.  We're dealing with this right now with my mother in law....brought into the "city" where we live after having a bleeding stroke. My father in law, who lived in a rural area his whole life, is flabbergasted now to find out that the doctors are giving him back a wife who is little more than a vegetable...this morning he's kicking up a fuss because they are discharging her and not keeping her "until she's better".  He doesn't understand thats how medicine works these days...hospitals keep you alive, thats it...they have nothing to do with helping you manage to live.
      •  I hope you will read (none)
        The story. Fidelity. At the hardest time, when a loved one is dying. It is a small story of the doing of the dying's request, or what you honestly know is in their heart concerning this matter.
        Perhaps your dadinlaw will read it too.
        ps. don't buy from amazon, support your community.

        I'ts too wet to work. Let's buy a DVD.

        by emmasnacker on Sat Oct 01, 2005 at 12:42:24 PM PDT

        [ Parent ]

  •  Excellent and Recommend (none)
    I have been through all this twice now and will spare you most of the details, but give you two of the least heartbreaking ones:

    Standing in the hall, screaming at the staff to up my father's morphine dose. "But that could stop his respirateion." Me: "I don't care. Up it."
    The last few days of my father's life were a fight between me and a staff that I saw as practicing torture, not medicine.

    Ripping the wires off my mother and throwing the staff out of the room after they had defied her dnr order for the third time. My duty as I saw it.

    My point: no matter how many papers have been filled out, directives signed, there has to be an advocate on site at all times.

    After seeing my battles, my dear friend brought her mother home, against medical advice and in the face of all sorts of threats, to die a natural death. Hard, yes. But real and natural, with no regrets and a chance to say a pleasant farewell in a human setting, absent beeping electronics, industrial smells, and masked ghouls. A good death, the last priceless gift of a dutiful daughter.

    -7.88, -7.74 In the end, we will remember not the words of our enemies but the silence of our friends. -- MLK

    by melvin on Sat Oct 01, 2005 at 11:33:06 AM PDT

  •  I hear you loud and clear (none)
    I work at a hospital.  I know exactly what you're talking about.  Its terrifying and the general public has no idea.  I have written my wishes down and left copies all over town.

    And my tombstone will read: "It Made Sense At The Time."

    by AmyVVV on Sat Oct 01, 2005 at 11:57:20 AM PDT

  •  I really need some good samples to draw from (none)
    Short of hiring a lawyer (which I can't afford right now), I don't even have a clue how to write a proper living will.  Needless to say, I agree with you wholeheartedly and would much rather end it than be kept alive under those circumstances.  Are there any good sample living wills available out there that cover some of these issues?
    •  Yes, one you can just fill out (none)
      http://www.agingwithdignity.org/

      Look for the Five Wishes document.

      The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself.  It is unique among all other living will and health agent forms because it looks to all of a person's needs: medical, personal, emotional and spiritual.  Five Wishes also encourages discussing your wishes with your family and physician.

      Five Wishes lets your family and doctors know:

          # Which person you want to make health care decisions for you when you can't make them.

          # The kind of medical treatment you want or don't want.

          # How comfortable you want to be.

          # How you want people to treat you.

          # What you want your loved ones to know.

      In troubling times, it's good to read true stories about real people doing good things. HeroicStories, free

      by AllisonInSeattle on Sat Oct 01, 2005 at 04:10:40 PM PDT

      [ Parent ]

  •  I recently earned my Masters in Public Health (none)
    and at no time, no where, did they discuss end of life issues. Dreadful program but that's a real long story. Anyway, people who are being trained for positions in Public health policy haven't a clue. Everything said above is true. Have a good power, make sure only one person has the authority at a time, have several alternates and TALK TO THEM IN DETAIL about all your thoughts and wishes. But you'll never know the way it'll come so give them the power to act.  If you write out every situation you can imagine, something different will occur.

    And for the love of god or humanity, say that you want all body parts used that can be - in writing - in the power.

    Give copies to all and keep some with you - in your running away from hurricane/flood/earthquake/?/ kit.
    Keep one in car for car crash.

    sam

    The critical Office is Secretary of State; they run the elections. Let's find superb candidates ! Sam

    by samddobermann on Sat Oct 01, 2005 at 12:59:34 PM PDT

  •  Yeah, Let me Add Another Ingredient To The Stew (none)
     I am an RN and I also frequently deal with such issues in an oncology setting.
     I think the authour raises a host of substantial and important issues but he is blaming the victim a little bit here. One thing he/she does not disclose is that MDs themselves will often do ANYTHING to avoid encouraging or starting those discussions with families and often the nurses caring for such patients are seething in frustruation.
     However, we can't just toss it back on MDs either. We seem to live in a society and a health care system that is so "customer oriented" that discussing an end of life issue is tantamount to admitting "hey we failed" and therefore we "gave bad customer service". Americans have frankly immature ideas about death and as evidenced by the extent we try potions, lotions, surgery, ect will do anything to keep it at bay as if it is something we can actually do.
      I am like everybody else I fear death a bit but like the authour I want no heroic measures taken if I am brain dead. The last few  days or years of life spent like that are costly and I would rather be dead and let somebody else who can be helped be in my bed.
  •  Attending physicians perspective (none)
    I am a practicing attending hospitalist in an academic medical center and I wholeheartedly agree that the issues surrounding death are almost completely ignored by the society at large. The usual culprits for this are that this is NOT a topic that the media wishes to discuss because it's a downer. So it is up to physicians like myself to teach what end of life care truely means and have them bring the message to their future patients. This is by no means an easy task and I will explain why family discussions are not often pursued in the situation described above.

    1)It takes time: physicians who have an outside practice and also see patients in the hospital dont want to spend an hour or more discussing sticky topics with the family because time is money/lifestyle.
    2)Physicians are NOT reimbursed for this time so there is an economic disincentive and as was pointed out the chronically ill generate huge revenues for hospitals and physicians.
    3)People don't like making tough choices in general because we are a society that ignores those with problems. These patients at the end of life have often lost their voice (literally and figuratively)

    So how do we fix this problem
    1)Educate the physicians who will go onto to treat ie. med students, interns, residents, fellows and yes even attending physicians

    2)Bring this to the National stage: actually the schiavo disaster helped a bit, Not the way I wished we started the discourse but can give a point of reference

    3)Pay for this service: it will save countless dollars at the end of life if someone told the family that the Diagnosis of Alzheimer's is invevitably a fatal one. (I use this example because this is the MOST common cause of dementia).
    4)Realize that death is PART of life, No one is advocating euthanasia as the wingers would like people to beleive, The death of a person should be dignified and peaceful

  •  I'm concerned over the attitudes about (none)
    older people, though your point about qa living will is well taken.  My Mom's in her 90s in kaiser Permanente.  I noticed on her medical agenda sheet that she was overdue for a breast exam.  I asked her phys if he would get it scheduled.  

    His attitude seemd to be that she was an old lady and would likely die before the breast cancer killed her anyway if she had it and you know, the mastectomy would probably kill her.  And why save her, you know, her quality of life sucked with the macular degeneration,the hearing loss, and the arthritis in her spine.  (In other words, toss her away like a spent candy wrapper)  

    Never mind about a lumpectomy.  Never mind that we love her and she has value to us just by being here, never mind taht she has always been an aggressive survivor, never mind that she has a positive philosophy and is willing to take what comes with aging, and never mind that the previous generation of her family lived into their hundreds if something didn't nock them out by their 60s.  Never mind that she has battled back from otehr dread diseases when she has been given 6 months to live.

    Never mind that I've been clinically dead a couple of times myself and been resuscitated.

    Doctor, you are very young, and you may change your mind about your attitude about the old as you grow older yourself.

    Fighting them here, so we don't have to fight over there.

    by NorCalJim on Sat Oct 01, 2005 at 02:32:00 PM PDT

    •  That is why, yet again, it comes down to (none)
      a matter of choice.

      If you want extraordinary measures taken, be my guest.  You can take the default.  But my unwillingness to have them taken should receive the same respect.  My choice about myself does nothing to demean the eldery generally.

      "If you [just] wanted to reduce ignorance, you could ... abort every Republican baby in this country, and your ignorance rate would go down."

      by Major Danby on Sat Oct 01, 2005 at 04:00:56 PM PDT

      [ Parent ]

      •  Wasn't talking to you or about you or your choice. (none)
        Was addressing the decline in physician attitudes  about the elderly.

        This dnr promo would have been much more  convincing if it came from soem one who had been resuscitated and said, "Hooey, you know, that just wasn't worth it, I wish I was dead."

        Fighting them here, so we don't have to fight over there.

        by NorCalJim on Sat Oct 01, 2005 at 09:48:52 PM PDT

        [ Parent ]

    •  Quit playing the victim ... (none)
      ... and find your mother another doctor.

      I agree with you that her current doc is a heartless asshole, but guess what : YOU CAN FIRE HIM.

      I've lived with HIV for 20 years and have dealt with literally dozens of docs. Some have had the wisdom & compassion of a saint, most are average women & men of goodwill who do the best job they can without burning themselves out, and a few are careless, arrogant monsters. I pray to get the saints, I'm satisfied with the average Janes/Joes and I boldly confront, terminate and formally complain about the jerks.

      In addition, I learned a little secret : my healthcare is MY responsibility. In order to fully step into the role of advocate for my own wellbeing, I had to get educated about medicine in general and my own disease in particular. And trust me - the good docs love it when a patient plays an active role in their own care.

      When we become the decision-maker regarding someone else's health, everything I've said still applies.

      •  You miss the point. (none)
        I said  I was concerned about the attitude of physicians toward the elderly and used my mother's case as an example.  It isn't about me or my mother.  Mother has been taken care of.

        I object to the increasingly pervasive notion in the medical industry that longevity statistics are applicable to individual cases in regard to the provision of care.  They aren't.  This is a wholesale perversion of statistical analysis and the use thereof.  All these statistics tell you is that out of a hundred people, some number 'X' will live 2 more years, 3 more years, ....20 more years and so forth.  

        Do you withhold care because only half will survive?  Or one in five?  Physicians who are queezy about rususcitating the infirm and elderly  should specialize in allergies.

        Fighting them here, so we don't have to fight over there.

        by NorCalJim on Sun Oct 02, 2005 at 10:24:37 AM PDT

        [ Parent ]

  •  One of the reasons I think we find (none)
    ourselves in this mess is because Americans have a tremendously skewed perception of risks. Several people have brought up the risk involved in choosing not to treat, or even to proactively end, the life of a person who seems to have no decent quality of life. Yes, if we don't always take heroic measures, there is a risk that a few lives that could have been worth living will get shortened unnecessarily. As the age of the patient goes up, the risk becomes less, but there will always be a risk, because medicine is still an art. I think we have to consciously accept this risk.  

    JAMA Actual Causes of Death in the United States, 2000

    "The leading causes of death in 2000 were tobacco (435 000 deaths; 18.1% of total US deaths), poor diet and physical inactivity (400 000 deaths; 16.6%), and alcohol consumption (85 000 deaths; 3.5%). Other actual causes of death were microbial agents (75 000), toxic agents (55 000), motor vehicle crashes (43 000), incidents involving firearms (29 000), sexual behaviors (20 000), and illicit use of drugs (17 000)."

    Think about these statistics.

    Americans choose to let tobacco, alcohol and firearms be sold as consumer goods despite the risks. We treat a license to drive a personal automobile more as a right than a privilege. The state has to prove that you shouldn't drive, and it's not easy to do. You can choose to smoke a carton of cigarettes every day because the effects won't be felt for years. You can drink a case of beer every night because it feels good and your liver can't talk. You can drink 2 liters of soda every day because you can't feel what it's doing to your pancreas. An 18-year-old driver is given the opportunity to decide the safe speed to drive on a dark, two lane country road that is strange to him. Tired, distracted commuters get to decide when it's safe to make a left turn at the intersection of two four lane streets.

    And yet we're terrified to trust several doctors' prognoses and our own gut feelings about when to stop treating a demented or comatose patient because of the "risk." How many good years of life were lost when the 18-year-old driver decided it was OK to accelerate to 70 right before he hit a tight curve? How many good years of life were lost when the 40-year-old mother of three pre-teens decided not to kick her smoking habit?  How about the case where the guy is sure his kids don't know where he hides his handgun, and it turns out they do, and they want to show off for their friends?

    Compared to these risks, the risk of having one's life shortened by rejecting heroic measures when we appear to be terminal is simply ridiculously low compared to the other risks we tolerate every single day.

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