Sallekhana or Suicide

 

images-2Several weeks ago, a prominent and beloved member of our community fell to his death from the 23rd story terrace of his downtown condominium.

I knew, without being told, that he had jumped. It seemed a horrific way to die, but I recoiled at the term “suicide,” with its connotation of an irrational action and a waste of human potential. At age 86, this man suffered from Lewy body dementia, a progressive disease that is a toxic blend of Alzheimer’s and Parkinson’s. Given his prognosis, it was hard to view his action as irrational.

“We need another word besides suicide,” noted a mutual friend, “for someone with a terminal illness who chooses not to prolong the suffering of chronic disease in old age.”

Shortly after that conversation, in one of those serendipitous coincidences that leave you breathless, I read an article entitled Sallekhanā is not Suicide. It is one of the readings for the class I’m teaching on how different religions deal with death and dying.

I had never heard of Sallekhanā (sa-lay-ka-na), although it has been around for more than two thousand years. This end-of-life ritual entails the gradual reduction of food and liquids until death occurs.

It is a core practice of the Jain community, a religious tradition that emphasizes non-violence and, like Buddhism, seeks eternal liberation from the cycle of life, death and rebirth. According to Jain texts, the term derives from the words sal (meaning ‘properly’) and lekhana (‘to thin out’). Sallekhanā is viewed as the proper thinning out of the body and its passions.

But it is not for everyone, as there are strict criteria for its use, among them that:

  • Death appears imminent from old age or incurable disease.
  • One is mentally competent and in “good emotional health” but has freed him/herself from the bodily passions and emotions (e.g., grief, fear, regret, affection, guilt).
  • Responsibilities to one’s family have been fulfilled, and permission has been granted by them and by your spiritual “master.”
  • One has practiced “fasting” (e.g., no food one day a week) for some time prior to taking the vow of Sallekhanā. After taking the vow, one simply increases the extent of the fasting regimen, with the gradual elimination of food and water.

Jain teaching is quite clear that Sallekhanā is a sacred ritual that is part and parcel of a religious life style. Any self-imposed death that involves violence or impulsive behavior in response to depression, grief, or incurable disease, would be labeled suicide, not Sallekhanā.

Clearly, Sallekhanā does not cover my friend’s decision to jump to his death. But it does bring into sharp focus the fact that, in our current culture, many treat death as something to be to be avoided or delayed if at all possible. Sallekhanā is based on the notion that death is an inexorable and desirable part of a life well lived … that one’s worth as a human being is not measured by the ability to “hang on” in the face of terminal illness and considerable pain.

What word would you use?

 

Planet Alzheimer’s

 

images-1How many of you have struggled with Alzheimer’s in a parent or spouse?

I know, from my own journey with my mother, that it can be a horrific experience watching a vibrant and capable human disappear, day by day, before your eyes.

Equally painful is the sense of helplessness … the uncertainty as to how to care for and comfort someone whose emotional and intellectual needs vary from day to day … whose behavior shows no discernible pattern or logic… who “acts out” for no identifiable reason.

Thus, it was reassuring to learn, at a recent seminar in Des Moines as part of the “Embrace Aging” series, that it is possible to make everyday life quite manageable for both dementia victims and their caregivers.

The presenter was Chuck Wurth, a Managing Partner of several retirement communities in the Midwest designed specifically for dementia patients

Living in The Eternal Present

According to Wurth, the loss of memory causes its victims to live in an increasingly eternal present.  As a result, they lose the learned knowledge of cause-and-effect … the memory function that tells us what steps to take to achieve the outcome we want. For example, a dementia patient who is cold may no longer make the connection between getting warm and putting on a sweater or turning up the thermostat.

According to Wurth, dementia patients typically “act out” because they don’t know how to express their needs and/or what to do about it. In his view, meeting the needs of Alzheimer’s patients can be pretty easy … but only if you can figure out what that unmet need actually is.

One approach that Wurth suggested was to take the time … often significant amounts of time … to actually talk to the patient. He offered four checklists—medical, physical, social, and “caregiving”— to prompt specific questions you should to ask in order to discern what the patient needs. “How are you feeling today” just isn’t going to get you the information you need.

Rules of Planet Alzheimer’s

Wurth also believes that the social and caregiving needs of an Alzheimer’s victim are as important as the medical and physical ones: loss of memory does not eradicate the need to be accepted, respected and loved.

Wurth praises the approach developed by Candace Stewart in Welcome to Planet Alzheimer’s.  Stewart uses the metaphor of a different planet, where the language and the rules are different from our everyday world. To communicate with an Alzheimer’s victim, you need to learn their rules:

  • You are not who YOU think you are — you are who THEY think you are
  • Logic and reason do not exist … follow the rules of improvisation and go with the flow
  • Nothing is gained by arguing
  • YOUR truth and THEIR truth are very different … accepting their truth is not the same as lying
  • Never take anything personally
  • Have no expectations
  • Take advantage of the shuttle back to earth at all times … you need to have your needs met as well.

To me, the rules of Planet Alzheimer’s sounded much like interacting with a young child.  According to Wurth, however, you cannot treat dementia  victims like children. They are adults with adult needs, but adults who are have forgotten many of the lessons they once learned.

Wurth insists that caregiving for a friend or family member with dementia can be a rewarding experience—but it takes a very different kind of patience … and a frequent return to the metaphorical planet earth.

If you would like to download Wurth’s four checklists, click here.

Health Care and Patient Rights

 

UnknownWith every passing week, I hear another story of patient rights being trampled on—someone who got medical care that they didn’t want and/or didn’t need.  This, despite the fact that the U.S. Supreme Court has ruled, repeatedly, that patient autonomy—your right to accept or reject proposed medical treatment—is indisputably the law of the land.

But as with so many other things in life, you do need to read the fine print.  And very often, you need to read the fine print long before you actually have a medical decision to make.

The first problem may be your doctor.  Does he know what kind of medical care you’d like, and under what circumstances?  And if so, does he or she agree with you?  As Atun Gawande pointed out in his brilliant book, Being Mortal, most doctors have been trained to cure disease and fix what’s broken. They don’t necessarily stop to ask whether the proposed treatment will actually make your life better, or whether the cure will cost more in terms of dollars, physical pain and/or emotional stress than it is worth to you and your family.

As readers of my blog may remember, my interest in bioethics stemmed from my horror at the death of my father, who was bedridden after years of diabetic traumas.  His heart failed half a dozen times over the course of his last year. Despite his repeated pleas to be allowed to die, his doctor insisted on resuscitating him. My father finally died, not because his doctor accommodated his request, but because his heart just couldn’t do it one more time.

The issue is not whether my father had the right to refuse treatment.  The issue—the fine print—was that he had neither the physical nor emotional strength to challenge a doctor who was determined to “fix” his worn-out heart.

The second bit of fine print, a bit more literally, is that he never wrote down his desire to let take nature take its inevitable course.  This matters, because the Supreme Court has ruled that, when you are not competent to make a decision yourself and you have not made your wishes known through some form of Advance Directive, your doctor can use his best judgment.  My father was “competent” in the sense that he could carry on a conversation or read the newspaper, but neither he nor my mother were able to challenge his doctor on a complex medical and in a highly emotional environment.

There are rarely any adverse consequences for a doctor or a hospital that ignores the Advance Directive of non-competent patient, particularly if you don’t have a surrogate—a spouse, a child, a friend, a lawyer—who is legally empowered to advocate for your wishes through a Health Power of Attorney.  Even then, the doctor or hospital can refuse to honor your wishes; in such cases, your advocate may have to find a new doctor or move you to another hospital … heart-rending choices when you are critically or terminally ill.

And then, of course, you need to be sure that your legal advocate agrees with your wishes. I continually run into people who’ve appointed a legal surrogate, but not discussed their health care preferences … all too common when your surrogate is a family member emotionally geared to doing everything possible to keep you alive.

Then too, the Advance Directive needs to be precise enough to capture your situation.  Think, for example, about having an automobile accident and needing to be put on a ventilator. Would your answer be different if you were age 40 and healthy than if you were 90 with advanced Alzheimer’s? If you haven’t thought through and documented the kind of care you want under various scenarios, you are vulnerable to the preferences of whatever doctor or hospital is overseeing your care.

There are other health care documents you may be aware of: Do Not Resuscitate Orders (DNR)  … Physician Orders for Life Sustaining Treatment (POLST) … Fives Wishes … a Living Will.  They don’t all serve the same purpose, and many are subject to state law (which can vary dramatically from one state to another).  They all have fine print you need to read.

If you want to get up to speed, I highly recommend The Practical Guide to Health Care Advance Directives by Jo Klein Cebuhar.  It is delightfully readable, but is jam-packed with helpful hints for getting the fine print right.

A Night at the Caucus

 

 

A caucus-goer in training

A caucus-goer in training

For those of you unlucky enough to live outside of Iowa, I thought I’d share my experience of the 2016 Iowa Democratic Caucus.

To set the stage, imagine the gym of a local middle school, with royal blue bleachers … nowhere near enough seating for 420 voters (a record 62% of registered democrats in the precinct), plus assorted children, out-of-town observers, and photographers.  The crowd was mostly white, a mix of ages, and included an impressive number of first time caucus goers (indicated by show of hands).

I managed to squeeze into a bleacher seat with a dozen or so of my neighbors … all of us checking to see which of our friends were caucusing for whom.

The gym had no sound system, so the chairman of the caucus had to shout over the noise.  His first task was to count the actual voters, to confirm that voters in the gym matched the voters shown on the sign-in sheets. To accomplish this mundane task, the official “counter” walked back and forth along the bleachers and back and forth through the folks standing around the sides of the gym.  He asked the first person to call out “#1”.  Thereafter, each person he pointed to had to shout out the next number in sequence, until he got to the last person and also got to 420.

Amazingly, they got it right on the first try (Iowa’s been doing caucuses for a very long time) and announced that “viability” (at least 15% of the voters in the gym) was 63.

The Undecided's

The Undecided’s

For the next few minutes, we listened to a representative of each candidate extol the candidate’s virtues, after which we all clambered down from the bleachers and moved to our candidate’s “wall,” where we arranged ourselves in parallel lines of ten.  It reminded me of lining up for the bathroom in grade school.  With three walls and three candidates, that left the “undecided” huddling on the midline of the basketball court.

Again, the count was done by having precinct workers for each candidate walk back and forth through the lines of voters, counting them one by one.  When the count was completed, Clinton was ahead of Sanders, I think by 8 points.  O’Malley, at 32, was out of the race.  So were the undecided, all 13 of them.

The best part of the caucus was yet to come — the 30 minutes allowed to “persuade” friends, neighbors, and strangers to come over to your team.  Could you persuade O’Malley supporters and the undecided to join with Hillary or Bernie?  Good humored pandemonium reigned, with informed discussion of policies interspersed with promises to do neighborly favors like shoveling your driveway in the next snow storm (today).

IMG_2615Blessedly, we didn’t all have to return to our parallel lines.  This time the counters matched up those still undecided, those still sticking by O’Malley, and those who switched to Hillary or Bernie.  If you followed the math, there were 45 votes in play.  When the count was done, Hillary was still ahead, but this time by only 4 points.  For those of you who don’t do math, that was less a hair under 1% of the voters in gym.

We were only one caucus out of 1,681, but our paperthin margin reflected the ambivalence of Iowa.

If Iowa still has the first-in-the-nation caucus for the 2020 election, you should come to watch democracy at work. There aren’t many other places to see it in action these days.

My next blog, of course, will be back on matters of health and bioethics.