A Graceful Death; Death with Dignity

Jany Brody writes in today's New York Times about people who want to die and those who help them (within the boundaries of the law, of course). Her Heartfelt Appeal for a Graceful Exit opens the door to thinking and talking about the death of an older person.

I wrote her an email that I quote below because I can't really say it better:
I read your column on a Graceful Exit. I had two thoughts. One is that as I age -- I am now 64 -- I am becoming much more aware of the differences between me and younger people. I have led a very dynamic, active life, and in fact, I believe I look, feel and act a lot younger than I am.

But, the actual fact of age, of having lived a lot of years, of having had hopes and dreams and disappointments, of having invested in love and seen it both succeed and fail, of having an aging body, of the difficulty in rebuilding muscle after a total knee replacement and the like, are inhabiting my mind in ways that makes me look at life very differently.

When I watch young people, the children of friends, young men and women striding on sidewalks, riding in elevators, chatting it up in restaurants, I am struck by a feeling of how little they know of what will come to them with life, with time. Si jeunesse savait, si vieillesse pouvait.

As a young person, I looked at life from the rim of the volcano, from the front edge of the white water on a wave. Tomorrow was a real but empty concept. My energy and love of life would carry me forward through whatever I aspired to.

As a sixty-year old I see life from the top of a rise on a big long hill, overlooking fields and bays. There are more mountains to climb and valleys to hike through, but it is at a higher altitude.

As I read Ms. Brody's words about eighty and ninety year olds talking about wanting to die, it seems so obvious that from the perspective of the lives they have lived, that death would be the most natural next step. Not something to be feared, or fought against. And that younger people can't really understand how it feels to be that old. Not simply the body feelings but the whole package of awareness, knowledge, understanding of the arc of a life.

Much as people in their twenties, thirties, forties haven't a clue what it's like to be sixty, even at sixty I can only imagine what it would feel like to be eighty or ninety. Not everyone feels that way, of course, but I imagine a lot do and the issue is not with their feeling that they want to die but with their younger family members who can't imagine that state of mind and so translate it into the feelings of a younger person. Of something that must be desperate or depressed or hopeless.

It's not like that at all. Death is not so far away. Not so much to be avoided.

My work takes me close to the dying; in fact, much of my work is helping people to die (not from a medical point of view but as the decision maker when there is no one else). My awareness and knowledge of death is very different from when I was young. It will be much closer still if I live to be eighty or ninety.

Jane Brody closes her column with a plea for her family to have the wisdom to allow her to die with dignity. My reaction was that each one of us must build that into our health care powers of attorney and advance medical directives. And, more importantly each one of us must talk to family members and possible caretakers and make sure they understand that they are not to substitute what they think is best for what you have said you wanted.

So often, so much damage is done to the elderly -- and those are my clients and wards -- by seemingly well intentioned family members (and other court appointed guardians, conservators and trustees) who think they know better.

It is cruel to be stripped of everything in life except one's joy in the moment (dementia having often robbed one of memory) and the ability to decide what one wants. To then have relatives and caregivers dictate what one can or cannot do is truly unkind.

Part of my law practice is pushing back against such misguided caregivers on behalf of an older person or a disabled person, and trying to get the caregiver to align him or herself with the older person they are caring for and not to substitute his or her own ideas and values for those of the older person.

So, I admonish every reader to be very clear and very firm with your family members about their not doing what they think best, but rather what you know you will want and have told them orally and in writing.

See my earlier post on The Right to Folly. Soon I will write a post on the hell of dying in America. Hell is on This Side of Death, not the other. Also, another post on how to think about advance directives and health care powers of attorney.

Peace.

The Right to Folly

There are two kinds of people: those who think they know best what an old person needs and those who know that what the old person wants is what he or she fully deserves to get.

Old people have lived their lives. Their resources are their own (whether they inherited them or earned them). Their bodies no longer give them the ability to do everything they can imagine doing. The are going to die sometime soon. The order of priority, IMHO or IMNSHO, should be: 1. happiness. 2. health. 3. financial security.

For an old person, happiness comes from being treated with respect and love and they are allowed to choose what they want: where to live, what to eat, whom to spend time with, where to travel. Even when they are cantankerous, difficult, persnickety, tempermental and what they want is "impossible." "Protecting" them from "hurting" themselves or keeping them from spending their money "foolishly" only adds to the insults of being trapped in an aging body.

But sometimes, mirabile dictu, the law is on their side.* The District of Columbia code requires that:

(a) The court shall . . . encourage the development of maximum self-reliance and independence of a protected individual and make protective orders only to the extent necessitated by the protected individual's mental and adaptive limitations and other conditions warranting the procedure.

In my experience as guardian and conservator and attorney hired to help a person under a guardianship or conservatorship, the biggest challenge is to protect an old person from those who would "help" him or her. BTW, this applies to persons who are mentally ill or mentally retarded, as well.

One lovely man, a veteran, died a lonely death, frustrated and alone in a VA hospital, because his guardian/conservator would not help him to move to where he dreamed of living. Yes, his dream, anchored by dementia, was impossible, but there were many intermediary places he could have been allowed to go to.

My client raged, helplessly, that his guardian wouldn't give him $100 dollars of his own money to spend. When I asked the guardian why not, he told me, in a screeching voice, "I'm not going to give him any money when he is going to turn around and give it to a nurse and ask her to go buy him chocolate. I am not going to be responsible for his dying of diabetes from eating chocolate." So, of course, I pulled $60 cash out of my pocket and gave it to him.

My client was 86. He was alone. He had no joys in life but to call his wife, who lived in another nursing home, when his phone worked. After he died, his guardian sent me his cellphone. It was the smallest cheapest cell phone on the market. This for a many who couldn't see well and who had large hands and big fingers.

Another client got caught up in a fight with his daughters who, in their minds were doing the right thing and seeking court appointment as his conservators and guardians. Yes he had dementia and couldn't remember anything that happened yesterday. And he couldn't walk faster than a turtle, perched precariously on two wobbly legs. But his mind was still roaming the world he had traveled as a scientist, explorer and big brain about town. He didn't want to live in a facility where everyone was "demented, except moi, of course." And, he didn't want either daughter to be appointed his conservator or guardian.

When he wanted to travel to a geological conference in northern New England, his daughters intervened because it was still muddy and he might fall. The conference organizers assured me that he would be fine and all travel in the mountains would be by car.

After a final settlement (third court hearing, with daughters sitting with stolid, fierce anger on one side, my client confused and hurt on the other side), one daughter with forced cheerfulness asked whether he wanted to go to lunch and if so where. He suggested a lovely nearby museum lunchroom. The daughter said, "oh parking is a problem, how about the Italian place you love so much?" He looked at me. I suggested they go where he suggested. She said "that's the only one he remembers." I shrugged and walked away, not wanting to be seen to be the ever hungry lawyer billing her client for trivial hallway conversations and interfering between father and daughter. I should have said, "well, yes, it's the one he remembers because it's the one he likes."

When I asked his court-appointed conservator whether she would approve his travel to Europe next summer to another international conference, she wrote back, "Yes, if his health is cleared and he can do it safely." Was she going to get a doctor's certificate that he could travel? How was she going to evaluate the safety? He wanted to go to Europe! He had been invited by colleagues! He had plenty of money and could afford everything he would need. Who was she to impose her value set on him, her protective fears that he shouldn't be allowed to do anything risky or "dangerous."

Care for someone in need of "protection" -- meaning the person lacks the capacity to manage his or her affairs (which most often means not being able to manage the flood of bills, bank statements, advertising mail, etc.) or make sensible health care decisions (meaning not being able to understand the scope of one's health problems or make reasoned decisions about treatment) -- should be guided by the law: "encourage the development of maximum self-reliance and independence of a protected individual."

Substituting one's own judgment for that of an another, whether an older person, or a mentally ill person or a retarded person, diminishes him or her. Not only is it contrary to the law in the District of Columbia, but it is psychologically destructive and spiritually deadening.

It is the charge of the able to nourish and encourage and facilitate the old, the mentally ill or the mentally retarded. The able need to pull back from judging, from knowing what is best, from intervening to "protect," from substituting what I may think is "best" for what he or she wants. Old age or mental illness or mental retardation are what they are; there is no changing it; one can only accept it for what it is. It is for the able to make the adjustments and recognize the full individuality and right to respect, and yes, right to folly, of the older or mentally ill or mentally retarded person.

My friend Judy posted an awesome clip of life and music in Young @ Heart, a group of oldsters who have raised the bar, raised the roof and raised our hopes and expectations of what is possible. Check it out. It is WONDERFUL!

* Title 21. Fiduciary Relations and the Mentally Ill. (Refs & Annos)
Chapter 20. Guardianship, Protective Proceedings, and Durable Power of Attorney. (Refs & Annos)
Subchapter VI. Protection of Property of Incapacitated, Disappeared or Detained Individuals. (Refs & Annos)
§ 21-2055. Permissible court orders.