Facing death-7: The problem of prolonged death


Part of the aversion to thinking about death may not be the actual fact of dying but unease about the way we might die. In many ways we are fortunate that we live in a time when medical advances have enabled us to have much greater life expectancies than our ancestors. While much of this improvement has arisen because of reduced infant mortality, some has been because of our ability to combat many illnesses that once used to be quickly fatal. Because of the possibility of rapid response and treatment, many of the quick ways of dying such as due to heart attacks and strokes have been eliminated. But that improvement is not without its costs. We now see many more people having long and lingering deaths, the body and mind gradually losing functionality in ways that cannot be fixed, like an old car in which one part after another starts breaking down and one starts to wonder how much more one should invest in keeping it going.

My father died suddenly of a heart attack, his first, at the age of fifty-nine. It was a shock to all of us and by any actuarial measure he was far too young to die. But I knew my father. He hated and feared being sick and I suspect that he is like many of us, in that he would not have wanted to live to a ripe old age if the price that he had to pay was a long, lingering, and painful illness.

For example, I have given instructions that when I die, I want any organs to be used for transplants. I then want what remains to be cremated in the cheapest possible way. I watched an episode of the Penn and Teller Showtime TV series Bullshit! that dealt with death and was pleasantly surprised to learn that all you legally need as a container for cremation is a cardboard box that costs about $50.00 and this is what I want. The funeral industry tries to make the grieving survivors feel guilty if they go for cheap stuff and so people end up spending thousands of dollars on expensive caskets. What a waste! I will be dead. I won’t know or care how much money is spent on my death. The funeral industry is taking advantage of people’s fear that their friends will think they did not care for the dead person if they don’t splurge on a funeral. It is a scandal and I have left instructions to my family to not be played for suckers.

I have also given instructions that no extraordinary mechanisms should be used to keep me alive if the doctors feel that I have passed the point of no return. They should pull the plug with no regrets. Again, I have had a good life. It is not good to be greedy, to try and cling on and be a nuisance to the living.

The more difficult thing to deal with is a prolonged illness involving dementia. This can be very painful for the loved ones, to see someone who used to be alert and vibrant and independent reduced to a mere physical shell, a vegetative state where one cannot take care of even the most basic personal needs. The way to look at it is to realize that when that happens ‘I’ am already dead, although my bodily functions may still be continuing. By this I mean that ‘I’ am more than my basic physiology. I am also my mind. In fact, in my case, most of me is my mind and I see my body as merely the vehicle that allows my mind to function. So when my mind ceases to function in any way that is recognizable as me, then I am essentially dead because I have ceased to be.

The reason that people feel so bad at seeing someone they love in that state is that they think that deep inside is the ‘original’ person, the ‘real’ one, who is still the same and conscious of and frustrated by the disintegration of the external body. They think that the real person is saddened by the state of the physical one, that the real one feels frustrated with the physical one, and people are simply empathizing with that emotion. Other than in the rare cases of locked-in syndrome where one loses control of almost all muscles while the mind is unaffected, this idea of an inner person is really a religious idea, linked to that of the soul.

Of course, there is no reason to think that this is true. There is no real person inside. When my mind goes, I have also gone in every meaningful sense of the word. So do not feel sad for my state because there is nothing, no me, to empathize with. I have ceased to exist mentally and am simply waiting for the body to catch up with the death of my mind. This is why I think that assisted suicide should be made legal. I would like to take charge of my own death, so as to spare those around me the difficult decisions.

The desire to live is strong, though, and it is hard to predict if one is really willing to pull the plug on oneself until one is actually in that situation. You want people to make that decision when they are fully aware of what they are doing. But it is at those times that life is likely to be seen as still worth living. There are enough cases of people rationally making such a decision to suggest that there can be a time when the cost of continuing to live does not seem to be worth paying. But there are also cases of people who thought they would be willing to go quietly changing their minds and clinging on to life.

Ultimately it is an intensely personal decision and those who are not in that situation should refrain from judging the actions of those who are.

Comments

  1. Thorne says

    I’m with you on this. By the time my mother died she’d been gone for a good six months or so, her mind having slowly melted away until she couldn’t even recognize her own children, until even her husband of 60+ years was a stranger to her. Her final passing was a relief to us all.

    Like you, we learned that we only needed a cardboard box for the cremation, and since we didn’t have a funeral the only costs were minimal. When my dad went within the year we did the same, then mingled their ashes into a single urn, which was later buried in the National Cemetary, per their wishes. Total cost for both was under $5K.

    Like you, I’ve instructed my family to let the doctors take any parts that are still functional and cremate the rest. No funeral, no fancy casket. They can even dump the ashes in a convenient dumpster on the way home. I won’t care.

  2. Rob Grigjanis says

    When my mind goes, I have also gone in every meaningful sense of the word.

    If only it were that simple; here today, gone tomorrow. I’ve seen it more than once, and it’s not a sudden change, or even a monotonic fading away. I’ve seen anger at the realization that one is slipping away, and periods of lucidity alternating with periods of absence and memory loss. I’ve seen childlike joy, and confusion, and fear. So when is the mind truly gone?

    For myself, I would prefer that I recognize the signs early, and hope I have the fortitude to deal with it. Maybe a long walk deep into the woods, accompanied by a bottle of vodka and some music. Preferably in winter.

  3. One Day Soon I Shall Invent A Funny Login says

    You are absolutely correct, but it is also critical to note that, in the absence of the proper authorization, medical people are bound by law and their own inclinations to do everything possible to keep you alive. This can lead to the tragedy of a lingering death in a semi-comatose or vegetative state, hugely expensive and distressing to your survivors. Although this is important for the ahem mature person like myself, anyone of any age can suffer a stroke or an accident that leaves them hopelessly comatose.
    Two legal documents give you essential protection. First, if you have a spouse or life-partner, you need to have a Medical Power of Attorney that makes them legally capable of making medical decisions on your behalf when you aren’t competent to do so. This is especially critical when the partner isn’t a legal spouse: without this document your life partner of many years has absolutely zero say in your medical care. In fact without the medical power of attorney, under HIPA law, they can’t even inquire about your condition, let alone tell the doctors what to do or not do for you.
    Second, everyone should have a “living will”, a legal document that specifies exactly what care you want under what conditions. In California it is called an “Advance Health Care Directive”. The name and exact format varies by state, but the standard boilerplate language offers wordings for the choice between “do everything possible to keep me alive” and “just keep me comfortable and let me go”. And you can always add wording of your own to make it explicit.
    Any attorney can prepare these two documents for a small fee. Your signature has to be notarized. Once that’s done, you give copies to your regular doctor and to anyone you trust who might be involved if you become incompetent.

  4. Tadas says

    Hi Mano,
    This post reminded me of a Frontline episode that aired a few years ago about a person who was diagnosed with ALS and the decisions he made to end his life legally. In Switzerland, assisted suicide is legal. It is also legal for outsiders to end their life there as well, hence the episode title – Suicide Tourist. It is a powerful episode that looks into the assisted suicide system and this poor gentle soul’s last days. It is a very moving piece and definitely worth watching. Along with the video, the link below has a write-up about the episode as well.

    http://www.pbs.org/wgbh/pages/frontline/suicidetourist/view/

  5. Heidi Nemeth says

    Power of Attorney (POA) for Health Care in Ohio only allows the designee to make decisions if the ill person is incapable of expressing his wishes. Unfortunately, as people get more cognitively impaired and sicker, their primal instinct to live usually trumps any previous well-thought-out end of life wishes. So long as an old person can say, “Help me”, Ohio law requires medical care be given. Practically speaking, the ill and demented old person has to be unconscious to have his sentient wishes carried out. Added to that is the requirement that the POA be present – in the room with the unconscious person – for the POA to have authority to deny health care. So, if my step-father with senile dementia were to have a heart attack or stroke and become unconscious, he would be given emergency medical care unless or until I, his POA, were in his room to countermand it.

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