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.
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.