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 be cared for  – including assistance in dying – 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 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.

Aging - A Buddhist's Take on the Stages of Life

Because in our culture we tend to identify ourselves very closely with our bodies, the life cycle of man is usually portrayed visually in its physical manifestation. While this baby to invalid cycle certainly describes the passage of time for man’s body, it is not descriptive of the growth or deterioration of man’s spirit or wisdom over time.

Most cultures, through the ages up to the present day, have thought of the baby at the beginning of the cycle as a virtual blank slate, who knows nothing and who learns as he or she grows.  One exception is the Christian concept of Original Sin, a burden we are told we are born with and which can only be escaped through salvation.

As man grows older he was considered, until modern times, to gain in wisdom from his length of experience and his distance from the passions of youth, unless or until the point that senility struck.  Wisdom being defined as the knowledge of what is true and right, knowledge of how the world works, and the ability to make wise judgments.  As a result, in most societies, it was the elders who were held in the highest esteem.

In contemporary times, however, wisdom is generally not valued or sought after in most cultures  …   certainly not in the West and increasingly not in the East.  The sole remnant is in scholarly circles and to a certain extent, perhaps, in religious orders.  Rather it is simply knowledge that is valued, and knowledge is increasing equated with technological skill, with the ability to be technologically innovative being the highest valued skill of all.  

As a result, not just the old, but increasingly the middle-aged  … who were once thought to be at their prime professionally … are felt to be irrelevant to most everything.  Their way of thinking, of viewing the world, is outdated. One clear exception to this is the financial industry, where the only criterion of value is the ability to make money; it doesn’t matter how old you are.  In politics, it’s hard to say what is valued, other than the ability to get elected.  But no one, old or otherwise, is esteemed because of his or her wisdom.  

The Buddhist perspective on the trajectory of man’s life is quite different, starting with birth.  The Buddha taught that we are all born essentially perfect with the true Buddha nature inside us.  Zen Master Bankei (1622-1693) took this one step further and taught that we are all born with the unborn Buddha mind within us and so are born enlightened.

Thus, as a newborn, we are like Adam and Eve in the Garden of Eden.   We have not yet tasted of the fruit of the Tree of Knowledge and thus have no knowledge of right and wrong, like and dislike, fear and insecurity.  We are one with our unborn Buddha mind.  Everything just is.  (Note: the Tree of Knowledge is not a metaphor for knowledge in the sense of scholarly learning; it is knowledge in the sense of  judgment of oneself and the world around one.  Thus Adam and Eve had no shame in their nakedness in the Garden of Eden, but afterwards wore a metaphorical fig leaf.)

What happens after we are born is that we do indeed learn.  We taste, one could say are force-fed, the fruit of the Tree of Knowledge, and as a result most of us are thrust out of the Garden of Eden into a life of suffering … of insecurity, fear, doubt, anxiety, anger, greed, lust, negativity, pride (yes, one can be very insecure and very prideful at the same time) … for the rest of our lives.  One may gain much factual knowledge and skill so that one is valued and rewarded financially, but as the years pass most people deteriorate spiritually, becoming ever more trapped by their feelings of insecurity and its destructive consequences, ever more distanced from the purity they were born with.

But the true Buddha nature is always alive within each person.  And so, if he becomes aware of the true nature of his suffering (in short, that it’s not a function of what is, but how one perceives it), if he stops walking through life asleep, he has a choice to return home to his unborn Buddha mind, which I must note is quite different from being saved or being born again, although the latter sounds similar.  

Let me explain.  When you return home to your unborn Buddha mind, you are at peace, judge neither yourself nor anyone else, and have the compassion born of loving kindness towards all.  When people are born again in the Evangelical movement, their faith may be reborn and they may have a “personal” relationship with Christ, but they unfortunately do not become Christ-like, they do not return to the unborn Christ within them.  Instead they become full of judgment towards others and self-righteous.

But I digress.  So, whether as a teenager, an adult, or a senior citizen, if we are lucky enough to experience something that wakes us up (and this something is often a tragedy or something “bad”), we have the opportunity to walk the path of the Buddha and become free of the feelings and perceptions that have made us suffer all our lives.  We relearn that our purpose in life is being compassionate and offering joy to all others (and thus to ourselves), not making as much money and acquiring as much as possible.  Thus, although the body may deteriorate as we age, the spirit may blossom and we may achieve what Buddhists refer to as “perfected wisdom.”

Which brings me to the issue of aging … valuing the elderly and death.  In our society we typically warehouse the elderly, whether well-off or poor.  If you’re well-off, you will have more comfort, but basically you will still be separated from your loved ones and, as you become more infirm, increasingly isolated from the rest of society, from that which gives life its context and meaning. 

It didn’t use to be this way.  In an earlier day, when family values and options were very different, the elderly were cared for by their families in their homes.  It was often difficult and burdensome, but the elderly were given love (I know it wasn’t always this ideal), and at least were surrounded by family rather than segregated into the unfamiliarity of an independent living apartment or a nursing home.

At the same time as we have made the process of aging more isolating, modern medicine combined with religious mores have resulted in more people aging and suffering in a way oddly appropriate in this age in which technology is worshipped.  Many elderly people are kept alive now who in earlier days would have died.  We typically see this as something wonderful.  And often it is.  But is it wonderful for the person if their quality of life is gone, as it is for so many?

There are several aspects of Buddhism which are relevant to how we treat the elderly and death.  The first is that all people are valued, all are respected.  Whether wise or not, at peace or troubled, old or young, a doer of hurtful things or good things … a Buddhist has compassion flowing from loving kindness for all, knowing that everyone suffers and that we all are they way we are because that’s how we’ve been programmed by our life experiences.  Free will is not a Buddhist concept.

Without question, the elderly are to be especially respected and treated with compassion because many are wise and all have weathered so much of life.  Yet I think it can be safely said that our current way of “dealing” with the elderly is neither respectful nor compassionate.  It is mostly convenient … for us.  And so this must change.  

I don’t know what the practical answer is to the way the elderly are segregated in our society and end their lives … which can take many years … in surroundings where the norm is boredom and loneliness.  But society must start talking about this problem and find a way to return human quality to the last years of life.  The elderly deserve to be treated with respect and offered joy.

Second, in Buddhism, death is seen as a natural part of life.  There is nothing to be scared of.  And so instead of running from death, Buddhists live life prepared that death may come at any moment.  They live, or try to live, in what Christians would call a state of grace … to be at peace, free of psychological suffering, offering others joy, and finding happiness in each moment.  

Most people unfortunately do not end their lives in this state, despite a last minute visit from a priest, minister, rabbi, or imam.  Such ministry may bring some comfort perhaps, but not peace.  Hospice programs work more toward that end.  Again, I don’t know what the answer is, but we should do whatever we can so that all people who are dying, whether young or old, are helped to find that state of peace before death.  

This also impacts the question of whether people have a right to die, or to death with dignity.  When your mind and/or body fails you in a major way and you are suffering, society should give you an option to end your life, peacefully, legally, rather than making you suffer even more.  

That’s all the Death with Dignity or Right to Die movement is asking for.  Actually, they’re asking for something far more limited, just in cases of a diagnosed terminal illness … i.e. the person is going to die soon anyway, so why not let them end their suffering.  

But the medical profession’s fear of being sued and the religious establishment’s argument that since God gave life, only God can take it away have come together to create a huge hurdle to enacting such legislation, abetted by a fear of death that most people have.  Interesting how the religious will support human intervention to extend life, when if it were up to God and the natural process the person would die, but won’t allow human intervention to end life even when that is what a person clearly desires.  So much for leaving things in the hands of God.

Bottom line, we are talking about human beings here.  All people have the right to be treated with respect.  And if a person decides, while he or she is of sound mind, that when a defined irreversible (not necessarily terminal) physical or mental state is reached that he or she wants to be aided by a physician to die in peace with dignity, then that person’s will should be respected and the law should allow for such physician-assisted death.

So much suffering is inflicted upon mankind in the name of society’s values and customs.  At least at the end of one’s life, one should have the option to be free of suffering and to die in peace, free of fear, free of anger, free of pain.

A Meaningful Right to Die

There is a worldwide movement, with organizations in most developed countries, to foster the right of individuals to choose to die with dignity.  

Those efforts are limited to directives in the eventuality that the individual is either terminally ill or suffers from irreversible physical illness, intractable physical pain, or a combination of progressive physical disabilities.  Even in the Netherlands, which is one of the few countries to have enacted voluntary euthanasia, it is limited to those suffering from “hopeless and unbearable suffering,” which has been interpreted as meaning serious medical conditions combined with considerable pain.  These directives are to be made when one is of sound mind when making this contemporaneous choice.  

The mission of the organizations working towards the acceptance of a right to die with dignity are thus too narrow in my view.  As a human being, one should have the right while still of sound mind to determine the timing of ones death if at some future point one is no longer left with anything resembling “quality of life,” and that should not be limited to the physical indicators typically espoused.  One should be allowed the right to choose to die with dignity regardless whether the problems are physical or mental.

Case in point ... my mother.  When she was younger, which is to say in her 60s and 70s, she used to notice people who were suffering from dementia, looking blankly at the world, and say, “If I ever get like that, give me the black pill.”  Meaning that she wanted to be helped to die.

My mother is now 103 years old.  For the past year she has resided in the nursing home of a life care facility where she has lived for the past 13 years, starting with an independent living apartment and “progressing” to assisted living and then the dementia unit before being transferred to the nursing home.  She lost her memory, both short term and long term, years ago.  She sleeps or dozes most of the time, has no energy, has little awareness of what’s happening around her, although she does recognize my brother and me, sometimes, and takes joy in our presence and when we take her out in the sun on a nice day.  I should note that my mother takes no medication and is definitely not alive due to any specific miracle of modern science.

At the facility where my mother lives, there are many people who look blankly into space, who are not “terminally ill” or suffer from an irreversible physical illness or progressive physical disability, unless the dementia of growing old would fall under that category, which is not the case.  Suffering the results of a stroke would probably also not qualify under these narrow definitions.  The very old are not considered “disabled” nor are they considered to be suffering from an irreversible illness.  Odd, because both is often definitely the case.  

From every perspective, not allowing such people, indeed all people, to have a directive to die when they reach such a state or one of the physical states noted above is wrong; it is inhumane.  From the person’s own perspective, there is no question that most of them had they been asked while they were still of sound mind whether they would want to live under such conditions would have said, “no,” just as my mother did.  Who in their right mind, no pun intended, would want to continue living in such a state?  And it is the wishes of the individual that should be controlling in a matter such as this.

From the perspective of the person’s loved ones ... spouse or children ... witnessing the mental and physical prison in which their loved one is living without any chance of change is brutal.  Even when there is still a spark of life, of who they used to be, left, as in the case of my mother, the overwhelming numbness of their existence is  the predominant fact of life.

Finally, from the perspective of society ... and many will howl loudest at this consideration ... the expenditure of vital resources to sustain life at this stage is not a viable use of those resources.  If the choice must be made, and unfortunately it must in a world of limited resources, between providing adequate schooling and other resources to children, for example, or spending huge sums of public money for end-of-life care, only one choice is rational.

Before going further, let me make absolutely clear again that what I am advocating is the ability of an individual, while still of sound mind, to make a directive that if or when at some point in the future he or she should reach a certain defined state of hopelessness and unbearableness ... be it mental or physical ... he or she directs that they be helped to die.

The first question to be asked is, why are living wills ...  the direction to withhold life-prolonging actions in certain situations ... broadly accepted whereas the right to be helped to die is broadly not accepted, except in very limited circumstances and in very few jurisdictions.  The usual explanation given is that it is one thing to ask that medical efforts be withheld, which fact will hasten death; it is another to ask that medical efforts be made proactively to hasten death.  

I would say that this is a distinction without a difference.  Are not both actions a decision to commit suicide?  Why is asking to withhold efforts morally or legally different from asking that efforts be taken?  The one answer is that the medical profession’s holy grail is to prolong life.  Withholding life-prolonging efforts, even at the very end, is scandalous enough for many physicians and physician ethicists.  Actively bringing on death would be unspeakable, besides raising lots of medical malpractice questions. 

Were I more cynical, I would have to raise the fact that the medical profession and health industry makes a huge amount of money from the cost of end-of-life care as it currently exists.  There was an article in The Atlantic recently about a doctor who is trying to change the profession’s end-of-life culture and practices so that the patient’s welfare is predominant.  But I fear that it isn’t just a matter of ethical or Hippocratic Oath culture, it is one of money.  It’s no secret that doctors order many unnecessary tests because of the billings they can then charge insurers.  I fear the same motive plays a definite role,  even if subconscious, in their decisions on prolonging life at all costs, no pun intended again.

The next answer is the religious one.  Most religions have found a way to parse living wills as not being suicide, but consider voluntary choice of death suicide and thus against God’s law.  It is only God who decides when one dies.  But this distinction is patently without rational merit.  Without a living will, there is no question that such people would live longer, whether a few days or many months.  Yes, it would be due to the miracles of modern medicine, but that is what is available today.  It is, if one is of such mind, what God has provided to modern man.  

For those religions that do not even support the concept of a directive to withhold life-prolonging care, all I can say is that I find that position shows no respect for the human being who is suffering.  If one truly believes that God chooses the time of our death ... and this naturally must include all deaths, whether car accidents, illness, or gun massacres or the holocaust ... then one is beyond rational thought on this subject.

There is no master puppeteer that controls our lives.  When I and others say that things are the way they because it's just the way it is; it's meant to be and it's all ok – it is in the sense that things happen because of the universe's laws of nature or the laws of developed man's nature, not that some force chooses it to happen.  It you say "Your will, not my mind's" to the universe or the divinity within you, you are humble and at peace with the way things are.  And at peace, you are able to seek aid in dying in certain situations.

This is an important point:  in general, people do not make directives out of fear (other than fear of the medical establishment).  They make directives with a state of peace about their death; it is a spiritual state.

The final answer is the fear of people being “murdered” against their will.  People posit all sorts of horror stories of the mentally infirm elderly being taken advantage of by unscrupulous relatives who want their money, etc.  But if someone is of sound mind and makes such a directive, then the only thing necessary to prevent such manipulation is that the event or state that brings the directive into play be clearly defined and that two medical doctors must stipulate that such event or state has indeed been arrived at.  

Indeed, in looking at the long and broad experience with living wills, there has been no evidence that I am aware of of manipulation by others.  On the contrary, what one does hear of frequently is loved ones not wanting the directive to be honored; they don’t want the individual to die, they cannot give up hope that by some miracle the medical situation will improve.

But the locus for the decision to continue life must reside with the individual.  It is their life.  To not allow a human being the right to die with dignity is just one more example of the man’s inhumanity to and lack of compassion for man.  The right to die movement needs to expand its scope to include directives regarding hopeless and unbearable states that are mental as well as non-progressive disabilities such as those that result from stroke.