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.

Leaning In—To Old Age

 

MCG & KTZ in DingbocheFor several years after my husband and I abandoned our Wall Street careers to sail around the world, I accomplished nothing of economic or social value to anyone.

We rose at daylight, went to bed when it got dark, and aimed our sailboat in whatever direction the wind, weather, and currents allowed us to go. Because there was nothing I had to do and no place I had to be—indeed, most days my biggest decision was what to fix for dinner—I discovered what it meant to simply “be.”

Those years of being rather than doing were the happiest—in the sense of pure contentment—of my life. But my inability to hang on to that sense of contentment in the years since the sailing voyage ended has been a constant source of disappointment.

I rationalized its absence while I was back in the competitive world of high finance, assuming it would re-emerge when I retired. To my dismay, it did not. Even in retirement, I seemed to still be defined by what I accomplished. Co-teaching a comparative religion class at a local university. Chairing the board of a mental health agency. Planning a trip to Rome for Kent’s 75th birthday. Editing a friend’s memoir.

But no matter how much I accomplish, the shadow of old age looms on the horizon. With each passing day, I have a few more wrinkles, a bit less energy, and an ever-increasing list of words that are no longer at the tip of my tongue.

Why am I so determined to pretend I am still in the prime of life?

That is the question at the heart of Daniel Klein’s delightful Travels with Epicurus. In this lovely little tome, Klein revisits the Greek communities he knew as a young man, as well as the philosophers—among them Epicurus—who inspired him to live life well and to the fullest.

Now, in his 70’s, he muses on how the meaning of living life well has changed over 50 years. Throughout this geographic and literary travelogue, Klein asks whether trying to “extend the prime of life into old age” causes us to miss out on what is most valuable about growing old—and being old.

Drawing on the wisdom of his philosopher friends, Klein observes that in old age, you have the freedom to savor every moment for itself rather than what it represents … your friends are companions rather than connections … the person with whom you dine is more important than what you eat.

But, he notes again and again, the ability to savor those moments and those friends depends on your ability to step away from the often self-imposed notion that your worth is based on what you do rather than who you are.

Reading his book was a bit of an epiphany. Over the years, it seems I have put “finding contentment” on the list of all those things I ought to do. Reading Klein, it struck me that if I simply allow myself to grow old—instead of trying to stay forever young—contentment might actually find me.

Are you willing to step out of the stream and lean into old age?

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Cooking with CRISPR

 

A strip of DNA

                        A strip of DNA

CRISPR sounds like some clever kitchen trick we should all know about. In fact, CRISPR is a radical new approach to medical and scientific research, one that adds a new level of urgency to a familiar question in bioethics.

Does the fact that we can do something [insert the medical or biological procedure of your choice] mean that we should do it?

Debate continues over the use of now-familiar medical technologies such as birth control, ventilators, and artificial nutrition. A whole different level of debate is associated with genetic engineering … things like stem cell research, cloning, or in vitro fertilization, as well as genetically modified organisms (GMOs) in the food supply.

Do we really know the full implications of genetic engineering on the future of the human race?

What Does CRISPR Do?

These debates take on an added urgency with the emergence of CRISPR (I will not burden you with the scientific name, which would take up nearly a full line of type)—a new tool for genetic engineering. CRISPR has been likened to the search function of a word processor.  You decide what part of a gene you want to remove and/or replace, give CRISPR the appropriate instructions, and send it on its way. Voilá, the change is made.

Genetic work of the sort done by CRISPR has been around for nearly half a century … think of research into cystic fibrosis using mice or the development of pest-resistant corn. But before CRISPR, altering a gene was a laborious manual procedure. And once you had edited that gene, you had to breed and observe several generations of your subject (be it mice or corn) before you could tell if the experiment had worked as expected. Research on a single mutation could take as much as two years to determine success or failure.

According to a recent article in the New York Times, “altered genes frequently ended up in random locations, or in widely varying numbers” making it difficult to discern whether the concept was wrong … or whether it was a good idea that failed because of errors in the editing process. Progress was further slowed because you could only edit one gene one at a time; research on diseases thought to reflect the interaction of multiple genes (e.g., many forms of cancer) was halting at best.

20150508_075515_SJM-CRISPR-0510What makes CRISPR so significant is its speed, precision and breadth. Imagine a multi-pronged tool … a kind of biologic GPS that can accurately locate one or more genes in a segment of DNA … a pair of scissors to snip out the surrounding DNA … a tool to stitch up the DNA so it appears undisturbed. Because CRISPR can address multiple genes at the same time, projects that used to take months or years can now be done in a matter of days.

According to the New York Times, CRISPR is already being used to develop better bio­fuels and create new enzymes for things as diverse as laundry detergent and paper milling. Animal breeders produce superior lean-meat animals faster and more reliably than with crossbreeding. Dannon already deploys CRISPR to create strains of bacteria designed to produce more flavorful yogurt.

CRISPR’s Possibilities

Many scientists see great promise in CRISPR. It will facilitate targeted drug research … offer new insights into the role of genetics in mental illness … perhaps find a mechanism for eliminating mosquitos that carry Zika, dengue or Guillome-Barre.

It also offers the possibility of eliminating the BRCA gene for breast cancer … for ridding the world of Hodgkin’s lymphoma or AIDS. But scientists do not begin to understand the full significance of any specific genetic trait—or the consequences of changing it permanently. As a related article in the New Yorker notes the potentially devastating sickle cell anemia was an evolutionary protection against malaria. Would eliminating the gene for sickle cell lead to a dramatic increase in malarial deaths?

More broadly, what are the risks of modifying the genetic structure of embryos or “germ cells” that develop into eggs or sperm?  Such changes would be passed on to all subsequent generations.

This concern has also been with us for nearly half a century. What is new is that genetic engineering projects that once required well-funded laboratories run by universities or corporations are now potentially available to almost anyone with a good head for science and access to decent laboratory facilities for relatively brief periods of time.

Does the fact that we can have CRISPR mean that we should use it?

P.S. A curious sidelight of this discussion is that one of the most prominent researchers in the CRISPR world is a 34-year-old scientist named Feng Zhang, who grew up in Des Moines, my home for the last 15 years.