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There is a deeply touching diary at the top of the rec list this evening.  Reading it and seeing what went right there - the diarist's ability to make the choices her husband would have wanted - inspired me to think this old diary of mine might be worth digging out of the archives to re-publish.  I've updated a line or two and fixed as many of the typos as I could find.  Likely not all.  I hope it might be helpful to someone.  The time to think about end of life issues is when you are well - not when you are sick.
Disclaimer: I write as a nurse, not as a lawyer.  I think we have reached the point now where most states have laws similar to what I know in California, but you should check.  If you use the software I did, the state-specific stuff is built in.  
 As a nurse and healthcare activist, one of my greatest frustrations is in seeing patients at the end of life getting care they would not want and from which they cannot benefit while their nurses burn out and their families struggle with what seem like impossible choices.  Not to mention burning through staggering amounts of scarce healthcare dollars, but I don't really want that to be part of this discussion.

What I hope to do in this diary is to share some of what I know after 30 years as a Registered Nurse that may help you or a loved one avoid some of the traps I have seen far too many patients and families fall into.  There is much we can't control about the end of our lives, but the care we receive is one of the things over which we can hope to have some control.
 

Scenario: Ellen is 85 years old.  She has high blood pressure and type II diabetes, but is generally well and active and lives alone in a small home.  She likes working in her garden.  Her daughter, Sue lives only a block away and visits frequently.  They have talked generally about end of life issues but nothing has been written down.  Ellen has always said "I don't want to be kept alive on machines." but nothing more specific than that.
 One day, Ellen suffers a massive stroke that leaves her unconscious, unable to move or speak, but breathing without difficulty on her own.  She is alone when it happens and Sue does not find her for a while after.  Since the event was not observed, no one knows for sure what time it happened.   Paramedics are called and she is rushed to the hospital, where she is admitted to the medical ICU.  She is receiving supplemental oxygen and intravenous fluids and medicines to reduce swelling in her brain.  After a couple of days, there is some slight improvement in her neurological status, but not much.  By this time, Cindy, her younger daughter, has arrived from the other side of the country.  Cindy and Ellen have not been close in several years, but now Cindy's grief is extreme.  The doctors approach the daughters for permission to start tube feedings.  They tell the daughters there is little hope for recovery, but that feeding is needed if she is to have any chance.  Cindy is very anxious to begin the tube feedings, saying "We can't just let her starve to death."  Sue is ambivalent.  Would her mother want this?

This is the kind of dilemma patients and families face every day in hospitals.  I'm a cardiac rehab nurse, not an ICU nurse, but I'm in and out of the unit almost daily and have plenty of chances to see the struggles that go on there.  What I hope to do in this diary is open up discussion, provide food for thought, share some knowledge and share some of my own experiences and what I learned in creating my own Durable Power of Attorney for Health Care.  And explain why and how you should create one too.
 In addition to the professional experience, I also have a personal experience with my own mother.  Faced with deteriorating health in old age, my mother decided to end her life and took a big overdose of the narcotics she had hoarded from my father's time as a hospice patient.  The overdose did not kill her, but left her comatose, with occasional periods of confused and combative semi-consciousness.  We had to face the choice to begin tube feedings or not.  It would have been easier if she had left us some guidance, but we had to do the best we could.  Here was my thought process: She found her quality of life to be unacceptable with the health problems she had.  Now, in the very best case, she would be much more disabled than before.  She has made her choice clear by her action, my duty to her is to support that choice.  We chose not to place the feeding tube and once that choice was made we also shifted the focus of care to comfort rather than cure.  I asked the attending physician for some specific orders, including narcotics as needed for relief of pain or shortness of breath.  We removed the rather modest amount of supplemental oxygen she was getting and she died in a remarkably short time, very peacefully.

Many people make statements like "I don't want to be kept alive on machines"  But the actual decisions we deal with are rarely so cut and dried.  The ventilator breathing for the patient is pretty dramatic and is obviously in the realm of what most people would call "life support".  but what about IV fluids?  Tube feeding? Antibiotics if you develop an infection?  All assuming you are unlikely to recover and unable to express your wishes?

A couple of years ago, I went online and bought a copy of Quicken Willmaker Plus from Nolo Press.
 This software led me through the process of making my own advanced directive and Durable Power of Attorney for Healthcare.  I highly recommend it.

Now I'd like to share some of the choices I made in the process and discuss them a bit.

The most critical step, and the most powerful way to ensure your wishes are carried out, is the appointment of an agent for health care decisions.
 This is the person who will speak for you if you are unable to speak for yourself.  Naturally, this only becomes operative if you are unable to express your own wishes and seem likely to remain that way for some time.
 As a married person, my primary agent is my wife.  This would be common, but need not be the case.  The person you appoint must not only be trusted, but must understand and - hopefully - agree with your choices.  Your agent's duty is to carry our your wishes, but it's not fair to ask someone to do something that conflicts with their own morals and values.
 You should also consider appointing a secondary agent - the backup in case your primary is unavailable or unable to function.  Mine is a close nurse friend with values - and experiences - similar to mine.

The next section of the software gives you options on the authority granted to your agent.  I chose to make mine very broad.  I'm trusting these people and don't want them hamstrung by limiting their power.  Here's what mine looks like:

 

Agent's Authority
Unless I have specified otherwise in this document, I grant my agent full authority on all matters relating to my health care, including full power to give or refuse consent to all medical, surgical, hospital, and related health care.
 X____ By initialing this paragraph, I expressly authorize my agent to make decisions to withhold or withdraw life-prolonging treatment, which would allow me to die, and I acknowledge such decisions could or would allow my death.
 X____ By initialing this paragraph, I expressly authorize my agent to make decisions to withhold or withdraw artificially administered food and water, which would allow me to die, and I acknowledge such decisions could or would allow my death.
 My agent's power includes, but is not limited to, the authority to:
• hire and fire medical personnel
• visit me in any hospital, hospice, nursing home, adult home, or other medical care facility
 • in accordance with the Health Insurance Portability and Accountability Act, and as my personal representative, request, receive, and review any information, verbal or written, regarding my physical or mental health, including medical and hospital records and other protected health information, and to execute any releases or other documents that may be required in order to obtain such information
 • in accordance with any other instructions I give in this document, sign any documents required to request, withdraw, or refuse medical treatment or to be released or transferred to or from a hospital, hospice, nursing home, adult home, or other medical care facility
 • authorize my admission to or discharge from (including transfer to another facility) any hospital, hospice, nursing home, adult home, or other medical care facility, and to execute any releases or other documents that may be required to do so
 • choose where I live and receive care and support when those choices relate to my health care needs
 • sign any waiver or release from liability required by a hospital or physician, and
 • contract on my behalf for any health care related service or facility, without incurring personal financial liability for such contracts.

Pretty sweeping.  There are some other legalistic parts having to do with issues like the disposal of your remains and such.  Then comes what I consider the real nut of the thing.  What are your wishes for care?  It's time to get a lot more specific than "no life support".
 The program leads you through some of the process pretty much step-by-step.  Here's how mine turned out:

 

I direct that my health care providers and others involved in my care provide, withhold, or withdraw treatment in accordance with the choices I have indicated below.
 If I have a terminal condition, I want:
• artificially administered food and water to be withheld
• all additional life-prolonging treatment to be withheld, including: blood and blood products, cardiopulmonary resuscitation (CPR), diagnostic tests, dialysis, drugs, a respirator, and surgery.
 If I am permanently unconscious, I want:
• artificially administered food and water to be withheld
• all additional life-prolonging treatment to be withheld, including: blood and blood products, cardiopulmonary resuscitation (CPR), diagnostic tests, dialysis, drugs, a respirator, and surgery.

Next, the program offers you the opportunity to make an additional statement of your wishes and values.  Here's where my personal experiences as a nurse came into force most strongly.  I'm not offering my version as a suggestion for what you should do, but more as an example of some of the issues you might want to think about:  

 

Personal Values Regarding End-of-Life Decisions
It is my belief that two fundamental components of human life are cognition and communication. Without these two, there is no truly human life, merely vegetative existance. I would ask that my agent and caregivers are mindful of this belief in any decision making regarding my care.
 Other Wishes Regarding My Health Care
Should I become incapacitated by reversable acute illness or trauma, I would wish the maximum of treatment as long as there is a reasonable chance of a return to full functioning. I am willing to tolerate arduous treatment as long as there is a reasonable hope for full or nearly full recovery. Should there be little chance of recovery, I would not want life sustaining treatment and would want maximum relief of discomfort, even at the risk of shortening life.
 Should I become incapacitated as a part of the normal process of aging or the progression of chronic illness, I would not want life sustaining treatment and would want palliative care and maximal relief of discomfort even at the risk of shortening life. I would specifically approve the use of opiates for relief of shortness of breath even at the risk of suppressing adequate respiration and shortening life.
 For purposes of the above, I consider "life sustaining treatment" to include not only CPR and artificial ventilation, but also artificial hydration and nutrition, antibiotic treatment, inotropic and pressor agents, renal dialysis and oxygen by mask or cannula

Pretty much everything in that last part is the result of hard experience and watching the struggles of families and caregivers with some of those issues.  Here are a few random personal thoughts:  In the days before modern medicine, most folks who survived into old age died either from infection or from the inability to take food or fluids.  Sometimes very old people died from the choice to stop eating and drinking.  Dying in that way is not miserable, but is rather a slow shutting down of the life processes.  Natural death.  On breathing: Severe shortness of breath, the inability to get enough air, is a truly miserable feeling.  Try a bag over your head for a few seconds.  The good news is that feeling can be almost totally relieved by morphine.  But in the process of relieving the bad feeling, it also suppresses the drive to breathe.  Do you want to buy a few more hours of life at the cost of spending them gasping for breath?  Not me.  I'll take the morphine and made that very clear.  Finally, as I have alluded to earlier, sometimes the intervention that sustains life beyond the time of natural death is not as dramatic as a breathing tube and ventilator.  It may be an IV antibiotic, or a tube feeding, or even - as it was in my mother's case - a few liters of oxygen by nasal cannula.  If I become terminal, and past the point I can communicate, I want all life sustaining treatments stopped, not just the big dramatic ones.

The document then finishes up with a few more legalistic bits and a signature page.  If you use the software I recommend, it will customize all of that for the laws of your state.  Once the document is signed, make several copies.
 Save the original for yourself, and give copies to:  Your primary and secondary agents, your personal physician or other primary care provider, and other family members who are likely to be around.  If you have an existing record at your local hospital you could call the medical records department and see if you can put one in your record.
 Hopefully, you will have given yourself some peace of mind, knowing that you have done all you can to make sure you are cared for in the way that you want.
Update: Here is another worthwhile diary looking at the same issues from a somewhat different perspective, more focused on communication with loved ones about your wishes.

Originally posted to Chico David RN on Sat Jul 07, 2012 at 06:52 PM PDT.

Also republished by Community Spotlight.

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Comment Preferences

  •  Tip Jar (109+ / 0-)

    "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

    by Chico David RN on Sat Jul 07, 2012 at 06:52:57 PM PDT

  •  This is something that most definitely needs to (29+ / 0-)

    be discussed with trusted people.  With the advancement of technology, how do you want to spend the last 'moments' of your life??  There is so much to prolong life, but is it a life you want??

  •  I didn't read your diary (29+ / 0-)

    because it would make me cry, but i know from the title what it's about, and damn this is one the most important things anyone can do. Both of my parents had end of life wills and it made the worst decisions ever so much easier to make. Not easier to take but easier to make.
    Do it tomorrow if you haven't already.

    Here is the truth: The Earth is round; Saddam Hussein did not attack us on 9/11; Elvis is dead; Obama was born in the United States; and the climate crisis is real. It is time to act. - Al Gore

    by Burned on Sat Jul 07, 2012 at 07:12:19 PM PDT

  •  dad had plans (27+ / 0-)

    my stepmom is an RN, former DON at a nursing home.

    mom had ALS, and drug her feet, literally and figuratively.  didn't sign her DNR until what turned out to be the final hospital admission.  

    dear all:  please, make a plan.  and let your loved ones know.  and also, try to plan any services, and let an appropriate figure know.  don't lock this stuff in a safe or a safety deposit box.  

  •  Thanks for the push . . . (20+ / 0-)

    I know someone who needs to do this, and ordered WillMaker.

    A head's up for anyone who's interested; Amazon has Willmaker Plus 2012 for $15 right now . . .

  •  The State of Washington Has [Or Had a Very Few (14+ / 0-)

    years ago] an exhaustive questionnaire, some 10 pages long as I recall, that mom's lawyer walked her through in the course of drawing up her advanced care directive document.

    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 Sat Jul 07, 2012 at 08:01:59 PM PDT

    •  I ought to have mentioned that. (22+ / 0-)

      Mostly, advanced health care directives don't need a lawyer, though one may occasionally make sense.  Some of the states have pre-printed fill-in-the-blanks documents that can be helpful in varying degrees.  The biggest problem with most of them is they don't get specific enough in some of the ways I mention in the diary - what really is "life support"? to cite just one example.
      But the real core essentials are: appoint and agent, and have a really thorough conversation with that agent.

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sat Jul 07, 2012 at 08:06:25 PM PDT

      [ Parent ]

      •  Important to be specific... (0+ / 0-)

        Years ago our lawyer... when finishing wills and the like, on the advance directives said he preferred to leave things blank (assuming we trusted each other to make good decisions)... and assign full decision making to the person designated.

        Now, my husband has terminal cancer.  We have had many discussions about end of life care, and I do know that the advance directive gives me broad powers, but I must admit I wish he had been a little more speicific.  When I was talking to him about someone with PC that I knew of that had been admitted for sepsis, and tried to get him to give me some guidance in case that happened to him, he said "I trust you to make the right decision".  

        I too have health care background, and know the difficult decisions that have to be made... often not as simple as whether to put on a respirator, start tube feeding, or do CPR.  Other things, antibiotics for a cancer patient, IV medications to support blood pressure or control arrhythmia, and hardest of all, feeding through the veins... need to be discussed.  If faced with those decisions, I will wing it, based on the quality of life he had before and the chances there can be more quality.  

        I'm not so comfortable than when he is gone, that my wishes will be followed.  And I think the detail you are talking about, will be even more important.

        Thanks for a thoughtful diary.

  •  My mom is (1+ / 0-)
    Recommended by:
    Matt Z

    dead because of a DNR.she could have been saved.

    •  I'm sorry for your loss. (16+ / 0-)

      I can't really judge the statement you make and wouldn't dream of trying, though more details would be interesting to know, if you feel like sharing it.
      Just for clarification for anyone else reading, the document I talk about in the diary is an Advanced Health Care Directive, which may also be called a Living Will, or a Durable Power of Attorney for Healthcare.  It is a tool for a patient to make their wishes known and set up a mechanism to make sure their wishes are followed.
      A "DNR"  (Do Not Resuscitate) is a physicians order, usually written in the hospital and with application only to that hospitalization that says not to do CPR or various other measures on that person if they have a cardiac arrest.  It is always written (at least in my experience, which is considerable) after consultation with the patient and/or family and/or appointed agent.  There may be times and places where this is not the case, but at least in my experience anyone who has a DNR order has chosen it - or they were incapable of choosing and a family member or other agent made that choice on their behalf.
      There are also now, at least here in California, out of hospital DNR orders that are usually written for patients in hospice care.  I'm not very familiar with those.

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sat Jul 07, 2012 at 08:26:38 PM PDT

      [ Parent ]

      •  And how successful are resuscitations these days? (2+ / 0-)
        Recommended by:
        bumbi, weck

        I seem to recall that the statistics for "success" are shockingly low, even with the full technology of a hospital at hand, and that the definition of "success" is that the patient did not die...this time.

        This is a question that wants a more thorough examination, and I am not the one to do it.

        If it's
        Not your body,
        Then it's
        Not your choice
        And it's
        None of your damn business!

        by TheOtherMaven on Sat Jul 07, 2012 at 08:40:14 PM PDT

        [ Parent ]

        •  don't have the data on that. (2+ / 0-)
          Recommended by:
          bumbi, weck

          On rough terms: better than it used to be, but still bad.

          "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

          by Chico David RN on Sat Jul 07, 2012 at 08:45:52 PM PDT

          [ Parent ]

      •  Chico,i am begiining to feel like some (0+ / 0-)

        in the medical field  have decided some people are expendable,

        •  Not even a little bit true. (10+ / 0-)

          But we do - most of us - believe that people have a right to choose what they want.  Which is what an advanced directive makes sure happens.  Either way - you can use it to specify you want the maximum possible or the other way around.
          No one is expendable, but everyone does die.  It's the one certainty of life.  

          "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

          by Chico David RN on Sat Jul 07, 2012 at 09:13:47 PM PDT

          [ Parent ]

        •  Just the opposite (4+ / 0-)
          Recommended by:
          JVolvo, Ree Zen, Joieau, SoCalSal

          So many health care professionals work very hard to keep people alive, even people who have died and kept functioning artificially. They give an above-and-beyond care.

          But should people be left with their body nominally functioning when they've expressed a wish to not be kept fresh on a machine?

          We treat our pets better than our beloved humans.  When my son's dog was so old that his pain meds and his medical care was no longer effective, the vet came to our house to administer the drugs that would end his life in his favorite place on his favorite blankie among his family.  We've had several other pets that aged so much they needed help at the end. They'd lived long, full lives and were never going to get better, only worse.

          When my mother died, the doctors offered to keep her fresh on life support as long as we wanted - drugs to stimulate her heart to beat, a respirator to breathe for her, dialysis in place of her kidneys. I'd noticed a distinct yellow tinge to her skin and asked about her liver - they admitted that had shut down and was already decaying, it would never restart. Eventually, the decay would spread.

          She didn't have a Living Will. My brother wanted her kept "alive" as long as possible, my sister didn't know what to do and thought keeping her body fresh (I can't call it alive, nothing worked without medical intervention and it would never work on its own again) would make her feel better.

          In the end, I was the one to insist that we treat her with the same dignity we gave our pets. If her liver was already decaying, other organs would follow, and if we kept her on the machines, we would be allowing her to slowly be poisoned by her own body rather than allowing her body to finish the path to death it had already advanced so far along.

          Just because we weren't ready for her to die didn't mean she wasn't already dead.

          I asked what would happen if we stopped just one of the life supports they had going, and the doctor said she'd finish dying the rest of the way - she needed all of them operating and it was a constant balancing act to make sure she kept functioning. I asked him which would be the fastest, and he said the heart medication.  She was already at maximum and they were having trouble keeping her heart beating. I asked if we could do a trial, if her heart beat on it's own even for 5 beats after we stopped the drugs, I would let my brother have his way and keep her on life supports.  My brother and sister agreed.

          They stopped the drug, and her heart gave one beat.  Just one.  And never picked it up again.

          Really, the hospital staff were willing to do whatever it took to keep her body functioning.  But it wasn't humane, and it wasn't right to expend all that effort on someone who was already dead. They could probably have kept her body functioning for weeks before the rest of her organs began to decay, but what was the point?  She'd never wake again, never recover.

          It's been 5 years now, and none of us have any regrets for the decision we made. We regret that she died, but not that we allowed her death to finish onits own schedule rather than delaying it for our own selfish wants.

          All knowledge is worth having, so consider supporting OctopodiCon's Kickstarter

          by Noddy on Sun Jul 08, 2012 at 09:13:31 AM PDT

          [ Parent ]

      •  Another problem this thread points out-- (5+ / 0-)
        Recommended by:
        Chico David RN, weck, JVolvo, CorinaR, SoCalSal

        Many people mis-understand what DNR really means.

        My sis-in-law is a lawyer, and she doesn't understand it at all. I've tried to explain (I worked in a medical ICU) but she still is convinced that it means "withdrawing care." NO! it does NOT mean that.

        It means that if you have cardiac arrest or stop breathing  resuscitation is not attempted. Cardiac or pulmonary arrest basically means that your body is not supporting life: i.e.; you've died.

        Democrats promote the Common good. Republicans promote Corporate greed.

        by murasaki on Sun Jul 08, 2012 at 06:57:30 AM PDT

        [ Parent ]

        •  Right! (5+ / 0-)
          Recommended by:
          Noddy, weck, JVolvo, Joieau, SoCalSal

          I actually think in the early days of DNR orders there was a tendancy to withdraw care - many caregivers didn't know what to do whith themselves when "cure" was no longer the goal.  But we are long past that.  All normal care continues with a DNR.  And even when there is an order to stop all "life-sustaining" care - antibiorics, oxygen etc, care that is designed for comfort still continues as before.

          "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

          by Chico David RN on Sun Jul 08, 2012 at 07:20:20 AM PDT

          [ Parent ]

  •  Hi David, thanks for posting. I've a similar (17+ / 0-)

    diary that I've reposted occasionally, feel free to link if you choose,  Life Panels & End of Life Conversations

    It's a difficult subject, so they tend not to get a lot of attention, but it's a good time to remind people when something like this happens.

    Information is abundant, wisdom is scarce. The Druid

    by FarWestGirl on Sat Jul 07, 2012 at 08:41:01 PM PDT

  •  Excellent info. (5+ / 0-)

    So many things one wouldn't think to specify. Very eye opening. Thanks so much for sharing this.

    May 9, 2012 - Evolution Day

    by cooper888 on Sat Jul 07, 2012 at 08:41:02 PM PDT

  •  Living will.. (10+ / 0-)

    I need to update and file mine with my new doctors as we're in a different county now. Both my mom and my other half know my wishes. If it's at the point where my chances are very low, I don't want extreme measures.. BUT... I've been asthmatic since I was 15 and have had COPD for two years now. I am terrified of suffocating to death. So the Vent is a definite yes.

    But then if I made things simple I wouldn't be me ;).

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Sat Jul 07, 2012 at 08:42:33 PM PDT

    •  Hopefully it will be many years.... (12+ / 0-)

      before it becomes an issue, and I don't judge anyone's choices on this, but, a few thoughts to consider:
      It really is true what I say in the diary: that awful feeling of air hunger absolutely can be eliminated with medication, properly used.  Also, life on a vent is pretty miserable.
      However: going on a vent is not a one-way street anymore, if it ever was.  There used to be a mistaken idea that stopping an intervention was somehow different than choosing not to start it - that once you were on a vent you had no choice but to continue.  That now is clearly not the case, medically, legally, or ethically.
      So it's very reasonable, and pretty common, that when a patient with chronic respiratory issues comes in in crisis they can be put on a vent in hopes it will allow them to recover from that crisis and go on.  Then, if it turns out they aren't able to recover and get off the vent, a separate decision can be faced about how long to continue.  So it's very reasonable to say to family "I want you to give me every chance to try and recover, but if I'm on that vent for a week and not getting any better, think about loading me up with morphine and turning it off".

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sat Jul 07, 2012 at 09:02:26 PM PDT

      [ Parent ]

  •  My dad gave me power of attorney (19+ / 0-)

    for his financial and medical decisions. I live in Alaska, he lived in my home state Kansas. As he aged he became more confused and I was obliged to activate the power he had entrusted to me. We had to get him out of his house and move him into a nursing home. This was the beginning of making hard decisions on his behalf.
    He had a lung condition from smoking for over fifty years and as time went on it became clear that he was developing lung cancer. My siblings and I agreed that there was no point in attempting to treat it as his lungs were so compromised that he would not survive surgery, not to mention that his dementia worsened with each passing day. It was a hard decision but my siblings helped me make it. Happily we were all in agreement.
    There were at least three occasions when he was sent to the hospital with symptoms of respiratory failure. Each time I had to get on the phone and remind the staff that he had a DNR and a "no heroic measures" order. The staff would question me and I would have to fax my copy of the POA and DNR to them. Now this is a small town where he was well known and where I was reared, but the hospital was a Catholic run hospital and they didn't take kindly to DNR directives. We went round and round but I held firm when they insisted on intubation, etc.
    I flew back to Kansas five times that year. In the end he died in his room at the nursing home on his 80th birthday.
    Be sure you have an ironclad advanced directives order with details of what you want done in various circumstances.

  •  Thank you very very much... (6+ / 0-)

    for this diary and for sharing your thoughts. I have not done this yet. My kids know what I want...I need to get them the written directives so there's no confusion.

    I belong to a funeral society and have all that in place, but need to do the 'advanced directive' and 'durable power of attorney for healthcare' pieces.

    Thank you..... :o)

    Sapere aude: Dare to know; to think for yourself; to be wise. I. Kant "What is Enlightenment?"

    by Sapere aude on Sat Jul 07, 2012 at 08:53:07 PM PDT

  •  My grandmother taught us well (14+ / 0-)

    My paternal grandparents didn't want to think about such things, and that made things much worse for my dad (an only child) when it was time to make those decisions.

    My maternal grandmother knew better. She told my mom (her primary Power of Attorney) and my uncles that everything was in the top right drawer of her desk. And it was, down to the songs she wanted sung at the funeral and what dress she wanted to be buried in. She knew that the last, best gift she could give her children was to have all of those decisions clear and in writing well in advance. She was right.

    I'm so glad my parents have followed her example. They have drawn up a detailed trust (and made sure everything is up to date), detailed medical Powers of Attorney, Living Wills, and they have given summaries to me and my sibling. Copies of the directives are in the safe, and my sibling and I know how to open it. We had a family discussion about the major points and are in agreement. After seeing what my friends have had to go through when their parents failed to much such things clear, I am reminded how grateful I am that my parents have made this inevitably sad time easier for me.

    Please everyone--do this for your loved ones.

  •  Thank you for providing specific wording (9+ / 0-)

    I have executed the documents you recommend, but was not quite as specific as the wording you have provided here. I will see if I can make an amendment. Very helpful!

  •  Catholic Hospitals. (15+ / 0-)

    One way to have control over your end of life health care is to avoid like the plague any Catholic hospital.  I've made it clear to my wife and kids that when and if the ambulance comes, DON'T take me to Fatima Hospital.  Memorial is only a short distance further.  

    Fatima provides good care -- I work in health care so I know this - BUT it still has rules on what you can and cannot demand/have control over.

    •  A fair amount of variation there (8+ / 0-)

      There are several large Catholic chains in the country, and they have some variation among them on issues like this.  My impression is that the former Catholic Healthcare West/now Dignity Health - the dominant one in California - is almost like a secular hospital on end of life issues.  But for those that stick closer to official doctrine on end of life (or reproductive health) issues, it's a real problem that there are many communities where the only hospital is a Catholic one.

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sat Jul 07, 2012 at 09:09:38 PM PDT

      [ Parent ]

  •  Our case (13+ / 0-)

    My mother in law passed away in March at age 93.  she had been declining for years and was recently declining rapidly.

    MIL made her end of life wishes clearly known verbally and on paper to both daughters, son in law, doctor, and the hospital.  she even had the bright green preprinted form for for end of life wishes on her refrigerator door for an ambulance crew that might come to the house.

    her clarity in this matter made things as easy as possible for us in her final days.  We made sure that she had palliative care for the maximum possible comfort and dignity.

  •  Do these things count (6+ / 0-)

    if you do it yourself -- that is, not hire a lawyer or buy the software, but just write it all down the way you want it to be?

    I don't have any money to pay for anything like that, but I'm not sure a non-notarized document would be valid to health care providers.

    "The difference between the right word and the almost-right word is like the difference between lightning and the lightning bug." -- Mark Twain

    by Brooke In Seattle on Sat Jul 07, 2012 at 11:45:46 PM PDT

    •  You are asking my question (6+ / 0-)

      and for similar reasons. I don't want the state of my checking account to control the way I die.

      I've been surprised, when I ask many of my older friends "Have you got elder care papers drawn up?" -- meaning precisely what this diary is about -- "and can you recommend an attorney?" So far, they haven't and can't.

      •  In my experience (1+ / 0-)
        Recommended by:
        Creosote

        advance directives are only good for people with insurance that will pay, and/or money. If you have neither you don't have to worry about being UNhooked, because you won't be hooked up in the first place.

    •  Good question! (3+ / 0-)
      Recommended by:
      Brooke In Seattle, Noddy, 4Freedom

      A lawyer may have a different answer, mine is from practical experience:
      First, California and most other states have pre-printed forms designed for do-it-yourself advanced directives.  They don't go into quite all the detail I like, but they are pretty good and perfectly legal.  They don't require notarization, again, at least in California, you can either use a notary or get two people to witness your signature - read the instructions about who can and can't witness.
      Walk into the admitting office of your local hospital and ask for one for your state - mine has them in a rack on the desk.
      And finally, the need for a legalistic document is highly dependant on your situation.  
      IF: you have family, IF your family all knows your wishes, IF you think you can count on them to carry them out and IF you are sure they won't disagree about it, a legal document is less necessary.  If you can't speak for yourself, doctors will usually be guided by what your family says you would want.

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sun Jul 08, 2012 at 07:25:59 AM PDT

      [ Parent ]

    •  you can find a lot of sample wording (0+ / 0-)

      by searching the web.  Surely you are a lot better off by having your wishes written down and witnessed than not.

    •  By law, hospitals, with every admission (2+ / 0-)
      Recommended by:
      Chico David RN, 4Freedom

      have to ask if you have Advanced Directives.  Most have the paperwork and will give you a copy or help you fill it out for free.  Know that different states require specific wording but most will acknowledge the forms from another state if you live there.

      Advance Directives have nothing to do with your finances  and should not be part of a general power of attorney ... that usually does not fly.  It is a separate document with specific wording.

      Do not put it in your safty deposit box, do not hide it. Make copies and give it to the important people in your life: spouse, children, doctor, etc.  Update and/or reaffirm both your medical Power of Attorney and Advance Directives every few years. This lets people know that the thoughts are current

      Your medical records for Advance Directives and DNRs do not carry over from one visit to the next. After a visit (even if it was yesterday) the records go to be archived. Present new copies of Advance Directives every time you go to the hospital.

      Out of Hospital DNR's are just that ... they tell people out of the hospital what you want.Ambulances and ERs are considered out of the hospital.  You are not in the hospital until you are admitted. Once you are in the hospital, the paperwork is different.

      This information is about 5 years old, but I do not think that it has changed all frommy chatting with my chaplain friends.

      "Life without liberty is like a body without spirit. Liberty without thought is like a disturbed spirit." Kahlil Gibran, 'The Vision'

      by CorinaR on Sun Jul 08, 2012 at 11:18:42 AM PDT

      [ Parent ]

      •  All true but one small quibble (1+ / 0-)
        Recommended by:
        4Freedom

        Don't wait until you are being admitted to the hospital.  Better then than not at all, but far better to do it when you are not under the stress of illness and can take time for careful thought and discussion with family.

        "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

        by Chico David RN on Sun Jul 08, 2012 at 01:53:17 PM PDT

        [ Parent ]

        •  Shouldn't try to do two things and the same time (0+ / 0-)

          What I meant was that most hospitals used tol give you a free form, even help you fill it out sometimes. I did that frequently ... friends, family or just people who wanted to know more. That was at a not for profit hospital that worked hard at esttblishing community relations and before buget cuts.  Don't know now.

          The forms off the net work as well but you don't have anyone to walk you through.

          "Life without liberty is like a body without spirit. Liberty without thought is like a disturbed spirit." Kahlil Gibran, 'The Vision'

          by CorinaR on Sun Jul 08, 2012 at 02:50:03 PM PDT

          [ Parent ]

  •  thank you for this very important diary. nt (5+ / 0-)

    Republicans only care about themselves, their money, & their power.

    by jdmorg on Sat Jul 07, 2012 at 11:49:48 PM PDT

  •  Wish I could rec this 100X (12+ / 0-)

    but I would like to add something.

    You say

    The most critical step, and the most powerful way to ensure your wishes are carried out, is the appointment of an agent for health care decisions.
      This is the person who will speak for you if you are unable to speak for yourself.
    I would say this is only ONE part of it. Be sure to tell your family what you want, if they do not want to listen then let them know that your agent KNOWS what you want and is in charge.

    I worked as a chaplain for many years and I have seen families overturn/disregard advance directives because they do not think it applies right now, or because of family stuggles, because the loudest relative wants to be in control. So, write it down and get your family to understand what you want.

    A personal story...Several years ago I got sepsis and it got bad enought, quick enough that I almost died.  I was in ICU for almost 3 weeks, hooked up to almost everything you could imagine. I was comatose but I distinctly remember a conference around my bed and me stuggling to be a part of the discussion. Then I heard a voice saying "No, she wants nothing heroic." and I relaxed. They stopped doing "everything" and I got better. Knowing that my children would step up to the plate for me made all the difference in the world.

    It felt like I did not have to struggle against the world any more. I have seen this happen many times, they withdraw heoric measures and the person gets better enough to say goodbye and interact with the family.  Unfortunately, when they die, the family begins to second guess themselves. What we do not understand (until we have been through it) is that it is a huge relief to simply be.  It is a gift of peace.

    The end of life decisions are not always about machines ... it is about how that particular person chooses to live his/her life. It can include declining transplants, dialysis, feeding tubes, treating pneumnomia and other less glamourous things.

    TALKING honestly with each other is the best thing that you can do. Getting it down in writing is also necessary because then it becomes one decision instead a dozen little decisions (and lots of extra paperwork) ... and because, unfortunately for many of us, the state governments want to tell us what to do.  The crazies like to prolong suffering, not quality of life.  Know your state.

    "Life without liberty is like a body without spirit. Liberty without thought is like a disturbed spirit." Kahlil Gibran, 'The Vision'

    by CorinaR on Sun Jul 08, 2012 at 06:53:40 AM PDT

    •  Sent to Top Comments... (5+ / 0-)

      This is a really important additional consideration.  I hope everyone reads this diary, and I hope they also see your comment.

    •  You are quite right (6+ / 0-)

      I focused on thinking about what you want and getting it in writing, but not enough on talking openly with family.  The biggest drivers of prolonged futile care are not doctors anymore - though that was once the case - nor is it the state in most cases.  The most likely people to demand that attempts to cure be carried on beyond all reason are the family and usually the family members least close to the patient.  My scenario above was deliberate in that respect:  The daughter who was closest and knew the patient's wishes was more likely to carry them out.  The daughter who was relatively estranged was more likely to demand maximum care.  I'm convinced that in in many cases this is driven by guilt feelings.  I've seen a number of cases where a person was peacefully progessing toward death, supported by staff and surrounded by family and suddenly the adult child that hadn't seen them in 10 years sweeps in like a whirlwind demanding we do "everything" to "save" Mom.  In the absence of a written document and an appointed agent, doctors will tend to go with the person demanding more treatment because they think that course is safer for them.

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sun Jul 08, 2012 at 07:50:25 AM PDT

      [ Parent ]

  •  Thank you for repubbing (1+ / 0-)
    Recommended by:
    Noddy

    I read the diary on tyhe rec list last night, too.  I saddens me when these things happen, but it happens to everyone; w2e live only to start dying.  On the subject of health care directives and whatnot, here in Missouri, the AG has the following on their Health care choices directive website and only requires a notary and 2 witnesses:

    Missouri DURABLE POWER OF ATTORNEY FOR HEALTH CARE CHOICES & HEALTH CARE CHOICES DIRECTIVE pages 15-20 of Life Choices

    or the actual Missouri DURABLE POWER OF ATTORNEY FOR HEALTH CARE CHOICES & HEALTH CARE CHOICES DIRECTIVE (not shouting, just too lazy to convert to lowercase).

    Thank you again for this wonderfully informative piece!

    Diana

  •  antibiotics (0+ / 0-)

    I would personally write a directive very similar to yours but would not direct the withholding of antibiotics.  I was curious about your reasons and would be interested in any comment you would care to make about this.

    •  Good question. (2+ / 0-)
      Recommended by:
      4Freedom, wilderness voice

      My thinking was that this request (on antibiotics) becomes operative if one is moving from a focus on cure to a focus on care.  As long as the focus is in cure, I want everything possible to be done to facilitate a cure.  But once it is accepted that a cure is not possible, then the focus changes.  At that point I am assuming that I am in the process of an inevitable progression toward natural death and I'm not anxious for anything that might delay that progression, only for care that would make it more comfortable.
      Again, though, all of this only comes into play in the event that one has concluded you are on that inevitable progression.  This is different from a Do Not Rescussitate order, which is often requested by an elderly person (or a person with severe chronic illness) who is admitted to the hospital for something perfectly reversible.  In that case I might say, no, I don't want CPR or to be put on a vent, but I want to do everything else short of that to try to cure this immediate issue and get me back into the community.

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sun Jul 08, 2012 at 02:01:34 PM PDT

      [ Parent ]

  •  Thank you for the clarification and terms (2+ / 0-)
    Recommended by:
    Chico David RN, 4Freedom

    to include. By coincidence, I woke this morning with  the thought that this week I must update my living will/durable power of attorney docs, and have that serious discussion with my two offspring. Thanks to you, Chico David, now I've got some specific language to use in the docs, and examples to discuss with my kids.

    Very helpful.

    The sh*t those people [republicans] say just makes me weep for humanity! - Woody Harrelson

    by SoCalSal on Sun Jul 08, 2012 at 01:21:55 PM PDT

    •  Thanks! (2+ / 0-)
      Recommended by:
      4Freedom, SoCalSal

      If I just helped one or two people do that, then the effort is worthwhile.

      "Wouldn't you rather vote for what you want and not get it than vote for what you don't want - and get it?" Eugene Debs. "Le courage, c'est de chercher la verite et de la dire" Jean Jaures

      by Chico David RN on Sun Jul 08, 2012 at 02:02:28 PM PDT

      [ Parent ]

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