Saturday, January 30, 2016

The Warehousing of the Elderly - Cruel But Usual Punishment

My mother is 106 and in a nursing home.  Around the time she turned 90, she went to live in a life-care community, first in independent living, then assisted living, then the dementia unit, and now the nursing home.

As I visit her frequently during her lunch, I have had ample opportunity to observe the other patients in the facility.  It is a sad sight.  In general, the people are visibly very unhappy, regardless whether they have extreme dementia, in almost coma-like states, or are still to some extent coherent.  

When she was younger, in her 70s perhaps, she used to say that if she ever got “like that” … meaning not able to care for herself … to give her “the black pill.”  That was her way of saying that she wanted to die in that event.

While I have often thought of the problems with how we care for our elderly (see my post, “Aging - A Buddhist’s Take on the Stages of Life”), it came to me the other day that what many elderly experience in their last years is cruel but unfortunately usual punishment.  

“How can I say, ‘punishment’?” the reader may ask.  I say punishment because the elderly have not chosen to end their lives in this way; the choices have been made for them.  The options are largely dictated by our society, including the medical profession, even if loved ones make specific choices within that structure.

The problem comes down to this.  Except for a very narrow range of directives that people can make in a Living Will, one has no control over the trajectory of one’s life once you are not of sound mind.  And even if one is of sound mind, the legal options are very limited.

What the law should provide is the opportunity for people, when they are still of sound mind, to state their wishes regarding how they want to live, be treated, or cared for when they reach certain events or stages in their life if they are no longer able to direct their own care.  I do not speak only of the elderly here because illness and accidents and death can come at any time.

So for example  (the actual document would be far more specific):

1.  If you have a health event (heart attack, stroke, accident) or as a consequence of aging become physically unable to care for yourself (TBD) and such condition is irreversible, 
do you:
- wish all efforts to be made to prolong your life whether in a nursing home facility or elsewhere, 
- do you wish to be assisted in dying if that is legally permissible, or 
- do you wish to be cared for at home and allowed to die?

2.  If you have a health event or as a consequence of aging become unable to think coherently and engage in conversation, are disoriented, and don’t know who you are, which condition is irreversible, do you:  (as above)?

3.  If you have an irreversible physical condition that produces constant, or near-constant, pain, which pain can only be reversed by putting you in a heavily sedated state, do you: (as above)?

4.  If you become terminally ill, do you: (as above)?

5.  If you indicate that you wish to be cared for at home and allowed to die, do you wish to refuse any and all treatment for any illness or condition which, if untreated, would eventually lead to your death or not?

6.  If you indicate that you wish to be cared for at home and allowed to die, would a hospice facility be an acceptable alternative or not?  

7.  If as a result of such refusal noted above you are in pain or experience other discomfort such as intractable nausea and shortness of breath, do you request that you be given all available palliative care, including narcotic medication, to mask any pain and ease any discomfort or not?

There are few things more personal or private than one’s physical and mental health.  Only by providing individuals while they are still in a sound state of mind with the ability to make such directives will society provide them with the control of their medical care and their life/death to which each person is entitled.