Summaries, Wrestlings, and Futures

No, dear readers, Dr. Bossypants is not quite finished with the whole Graceful Exits series, but it is time to do some heavy lifting, do a “Cliff Notes” review, and let things settle in.

Here are the main points so far:

1. We are mortal and will die.
2. Death can be sad and scary.
3. The most basic human right (and responsibility) is bodily autonomy.
4. We can choose to end our own lives without going to hell.
5. It isn’t always legal to get medical assistance to end your life, but it is nice way to go if you can.
6. Your loved ones need to know your wishes, even if they disagree.
7. There are ways for your remains to be honored that are less poisonous and costly to the environment and your estate.
8. The whole topic needs to be revisited, as naturally as possible, over time.

Before posting further on this topic, Dr. Bossypants would like to ask a favor. If possible, please choose somewhere between 2 and 102 people (book clubs, congregations, discussion groups, golfing buddies…) and share these essays with them in some form. Badger them into reading, thinking, and talking. Even better, cajole them into posting comments. This will help in a number of ways. Families will have heated discussions, communities and friends will form death clubs or build their own coffins, attorneys will make a bit of money helping people get their affairs in order, and Dr. Bossypants will have a sense of what to write/argue next.

Until then—be well, wise, and filled with wonder.

Graceful Exits: Dying Responsibly

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying. Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

Throughout this blog series, Dr. Bossypants has waggled her finger, trying to shame people into giving their loved ones and themselves a very large end-of-life gift: Clarity. Without clarity, the government has to step in. People are kept alive or allowed to die depending on the law and wishes of next-of-kin. Estates can end up tangled in legal battles. Sadness is worsened by anger and confusion. End-of-life suffering can be prolonged, and closure for the living is more likely to be impeded by conflicts and uncertainty. And certain questionable rituals and practices continue unabated because the fear of death and the enormous sadness of loss are debilitating and become excuses for the status quo.

As it became clear we had a pandemic on our hands, did people rush out and finally get their advanced directives in order? Make sure their Last Wills and Testaments were up to date? No, they bought toilet paper, thus demonstrating the immediacy fallacy: Only that which is immediate deserves attention.

It is easy to shop for toilet paper. It is neither easy nor simple to offer clarity, engage in conversations, write up legal paperwork, and revisit these efforts for the sake of those you love. But then, most of life’s most challenging, rewarding endeavors are not all that easy. Below are some practicalities you could attend to NOW while enjoying more or less sound minds and bodies.

Coffins and Such

            When my father died in surgery at age 44, my mother was utterly devastated—easy prey for the multi-billion-dollar funeral industry. I was 19 and have vivid memories of sales tactics involving copper lined caskets, fine silk for the body to rest upon, and other such emotionally charged but ultimately meaningless add-ons. Because we were a ranch family, there wasn’t much extra money, but in a grief-stricken daze, she did what she could. Dad’s unexpected death caught all of us by surprise. We weren’t ready to handle the intense pressures of tradition and big business in the midst of such despair.

Mom somehow survived and carried on, but she became a grimly determined estate-planner. She also made it clear that she wished to be cremated and have her ashes scattered on a specific hill. She wanted no headstone, no burial, and no fuss. As far as a funeral or memorial service—that was up to us. That was for the living. She planned to be in heaven by then, and I’m sure she was.

Grieving, memorial, and burial practices vary across time and cultures, forming a fascinating array of human creativity. From fancy, expensive coffins containing bodies filled with poisonous embalming fluid and marked by huge headstones, to simple pine coffins, to various cremation practices, we deal with dead bodies and remembrances in a variety of ways.

Some people who are concerned with the environmental toll of coffins, cemetery maintenance, and toxic embalming fluids have opted for cremation. This is not without environmental impact, but it is likely less damaging overall than the traditional coffin and embalmed body. The fuel necessary for indoor cremation is substantial. Exact estimates vary, but every cremation adds on average over five hundred pounds of carbon to the atmosphere.

There are now many companies and groups offering green burial options, so modifications have become more common. Dr. Bossypants is quite fortunate because her family has land in Montana, and she can legally be buried in a quickly decomposing mushroom coffin. It is also quite tempting for Dr. Bossypants to build and decorate her own pine coffin due to the gratification she gets from her acrylic paints and recycled slabs of wood. If she wasn’t so busy writing such upbeat blogs, maybe she’d have time to pursue this option.

You can choose how your body is disposed of after death. If you do not care, state laws and the funeral industry will step in, and your family will make whatever decisions they are allowed or feel pressured to make. When my father died, the loss was staggering, and we had no idea what he might have preferred. This added expense and complexity to an already horrid situation. When my mother died forty-some years later, her loved ones knew exactly what she wanted. This was one of her many gifts us, and we remain very grateful.

Last Wills and Testaments

            These are a pain. You don’t have to have one, but of course, if you don’t, your family will face hassles, more legal fees than necessary, and even potentially divisive conflicts. But it’s up to you. Basic wills don’t have to be terribly elaborate. You can download templates and just fill in the blanks. But like I said, you don’t have to do this. You will die either way. Dr. Bossypants is firmly convinced that being kind and thoughtful is good not only you, but for families, communities, generations yet to arrive.

Advanced Directives

            These, too, are a pain. But perhaps more relevant to your own interests. You can die without a will and not personally suffer any consequences. But when you approach death without any advanced directives or expressed wishes, things might happen that you will live to regret. With an advanced directive, you can have some control over what medical procedures you do or do not want when your life is on the line. You can plan to endure suffering or plan to reduce suffering. You can indicate whether you want to be kept alive, unconscious, and if so, for how long and under what conditions. You can indicate if you’d like to be fed with a feeding tube, hydrated intravenously, and/or given antibiotics for an infection—even one that may never fully go away.

            Historically, pneumonia was referred to as “the friend of the aged” because treatments were hard to come by and it was a relatively easy way to die. More recently, urinary track infections have become another common threat to the elderly. In your advanced directives, it is possible to specify that you do not wish these common infections to be treated under certain circumstances—advanced dementia, unconsciousness, and so on. With comfort care, these can be humane, gentle ways to die.

            Advanced Directives only go so far, and Dr. Bossypants has heard that the directives are often ignored in emergent situations. This is why you have to get them in place, revisit them, and talk, talk, talk. Your doctor(s) and loved ones need to be told, sometimes repeatedly, what you wish to happen. If you wish to be allowed to die, or assisted in the process, you are going against the norm, and sometimes, the law. This requires intestinal fortitude, communication skills, and attention to detail.

Resource Suggestions

Below are a smattering of resources to help you begin or further your preparations for dying. Dr. Bossypants knows that facing death is one of the hardest things humans have to do. And death comes whether we’re ready or not, so you don’t have to do anything at all. It’s just easier, kinder, and less expensive for those you love if you do take care of these things.

Resources for Arranging Your Burial Options:

Examples of Coffin Options:

https://www.greenmatters.com/p/mushroom-coffin

https://the-shed.nz/home/2018/9/9/go-your-own-way-have-fun-making-your-own-coffin

Also, there are many guides offered online as well. Be sure to check out the regulations in your state, as dying and being buried are governed at the state level.

Green Burial Options:

Guide to Green Burial – A Natural Approach to Funerals

Resources for Wills, Advanced Directives, and Addendum Options:

Wills:

There are too many sites to list here. Use your favorite search engine to find guidance of your choice. Forms for simple wills are also available in office supply stores.

Advanced Directives/Living Wills:

Again, these forms are governed state by state. It is best to get a simple set of forms from a hospital or online from an organization in your own state.

The organization I turn to most frequently for updates, political action, and wisdom is Compassion and Choices. Their website is rich with assistance. Here’s an example for an addendum to a generic advanced directive that deals directly with dementia:

Books to read:

Nonfiction guidance:

Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying by Derek Humphry

Finish Strong: Putting Your Priorities First at Life’s End by Barbara Coombs Lee

When Breath becomes Air by Paul Kalanithi

Being Mortal: Atul Gwande

Helpful Fiction:

Life Events by Karolina Waclawiak

Me before You by Jojo Moyes

Graceful Exits: Ways and Means, Blog 7

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying.Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

One of the reasons we are so reluctant to endorse the compassionate ending of life is that many who choose to kill themselves do so impulsively and/or violently. Guns are a terrible way to end it all, but that’s what 23,000 people in the United States chose last year. Over a thousand were children and teens. The horrifying scenes that family and first responders face are inexcusably cruel.

Hanging, leaping from high places, slitting wrists, or disemboweling are also means that leave behind horrifying, tragic scenes, sometimes with an aggressive edge; sometimes with abject hopelessness. No matter what laws we enact, it will always be possible to commit suicide “at” someone, and determined humans can find ways to die. The best ways to reduce these aggressive or despair-driven options are:

1. Make the means less immediately available.
2. Make other options and assistance far more available.

This is not a blog series about preventing these tragic events, though Dr. Bossypants helped write a book about suicide prevention recently. But it’s worth noting that these types of suicide gets lumped together with carefully considered wishes to gently end one’s life. The effect is muddled thinking, shame, over-reaching laws, and ironically, more secretive, rash, violent suicides than would otherwise occur.

Thoughtfully ending one’s own life must be a secretive act only when the dominant culture and/or loved ones force it to be. Being able to openly consider a chosen death allows people to avoid the precipitous acts that leave behind such damage. In some cases, alternatives can be found so that death is no longer the choice. In other situations, such open discussions might help provide a graceful exit, rather than days, weeks, or years of unconsciousness, pain, or enduring the agonizing wait for the end. Nothing takes away the sting of mortality or the deep sadness of the final farewell, but a planned death can alleviate suffering, some of the indignities most of us want to avoid, and sometimes, enormous expense.

Gentler Options

            This blog and the next drag readers from the philosophical to the acutely uncomfortable. People have been known to say, “Please just shoot me when the time comes.” This is glib, unrealistic, and ultimately not funny. For many of us, the time actually will come. We will become demented, disoriented by pain medications, artificially made “happy” by anti-depressant medications we would otherwise not agree to take, buoyed by false hope, or caught in the grip of denial because we are sad and angry that we have to die. When we think of our deaths, many of us hope we do not have to lie in a bed, having people change our diapers, feed us, roll our bodies around to avoid bed sores and listen to open-mouth snoring as our bodies slowly shut down. The truth is this: everyone has the right to specify their wishes. You can ask that you be kept alive at all costs and in all conditions, and unless your family runs out of money, your wishes will be honored. You can also specify your wish to have your life end in certain conditions. But right now, you cannot legally have that happen in most states. That is why, at least for now, it is important to know what options DO exist. Having someone shoot you is neither likely nor ideal.

Pharmaceutical Options

Most of us are at least vaguely aware that overdosing on certain drugs will harm or kill us. However, it is less common for people to know the exact dosage, how to administer it, and what the risks are. If we had a sane and compassionate culture, we could talk these matters over with a trusted medical expert, comparing costs, risks, and availability. As things sit now, this information is reserved for suffering animals.

When our dog, Timber, became so incapacitated that she could no longer walk, we lifted her into the cab of her beloved pick-up and drove to our vet. Instead of carrying Timber into a smelly, scary place, the vet came out to the cab with the injection, and we took a slow drive, petting Timber while she drifted off peacefully. It was a beautifully orchestrated end to suffering, and it is the death I wish for myself. Unfortunately, our vet refuses to sign on.

Short of veterinarian assistance, what’s available? As of this writing, in a minority of states, you are legally able to access medical assistance for a lethal dosage of the right drugs to end your life. There are lots of restrictions and paperwork, but some limited options exist. This landscape will continue to shift, depending on the mood of elected officials.

Death is capricious. Medically we have many ways to extend the life of the body but far fewer ways to extend the life of the conscious mind. This is one reason to use your mind NOW while you can specify the conditions under which you want to be kept alive or helped to die. Dr. Sandra Bem, a famous psychologist in New York, knew she had Alzheimer’s disease. She wanted to stay alive just past the time she could still sequence her actions enough to end her life, but she didn’t dare wait that long. She didn’t want her family members to risk a murder charge, so she had to die a bit earlier than her real wishes. It is a moving story—one available online to those with a search engine.

If you are wealthy and can imagine coping with international travel, you can fly to certain compassionate nations where professionals will help you end your life with dignity. This is what 104-year-old Australian, David Goodall, chose to do. He was in good health and of sound mind. He was also able to afford this decision, and he was ready to die. He was indignant and sad that he did not have the right to choose to die at home, with local medical support. It is, indeed, a sad thing that we deny such individual freedom, causing undue suffering, forcing duplicity and isolation.

In general, a large dose of a major tranquilizer combined with sleeping pills and alcohol is lethal. But obtaining the right substances at the right time can be challenging. A friend with terminal cancer planned ahead and found a way to order lethal drugs so that he could end his life at home. Family members traveled thousands of miles to be with him at his planned death. The drug order was delayed and his ability to swallow diminished. By the time the package arrived, he was unable to swallow well enough to get the drugs down.

Hospice was called in to manage his pain, but of course, hospice cannot provide lethal drugs or injections. He was kept mostly unconscious but was in both physical and psychological pain when awake. His family members had to return to their homes. The cancer finally killed him three weeks later.

Contrast this with this excerpt written by a loving son who was able to be present as his father died: My father passed away peacefully less than an hour ago. Thanks to Oregon’s “Death with Dignity” law, he exercised his “cosmic right” to end his life on his terms, not cancer’s. He passed on in a grassy field in the Ashland hills, under a tree and shining sun, next to an organic garden, and with Buddhist Monk chanting playing in the background. His very last words were “Wow. Amazing.”

Monoxide

At a recent social gathering, a physician friend and I were bemoaning the topics Dr. Bossypants is addressing in this blog. I asked her if she would provide me with a prescription for lethal drugs (with a long shelf-life) so I could end things if I needed to. Like our vet, she declined, citing the fact that she would like to continue to practice rather than spend her golden years incarcerate. She went on to say that she’d worked out an even better plan for herself: Her car, in her garage, running the exhaust in through a tube, with good wine, good music, and a blanket.

The plan has some appeal, but I am aware of others who made such choices and were either found before death, or had to put all the pieces in place, inform others, and then die alone. Some of my clients and family members would prefer to die alone, but many would rather have loved ones close by. Short of gas masks for those in attendance, monoxide could be a lonely death. Also, it requires planning, tools, and privacy—all of which may not be available to a demented or very ill person.

Starvation and Restricting Fluids

            A dear and wise colleague of mine was diagnosed with early Alzheimer’s disease a few years ago. She acted quickly, entrusting her final days to friends. Her choice was to stop eating, but she knew she might forget her own choice, so she put the pieces in place that would allow trusted friends to help her starve herself to death. She was in good company. There are many historic accounts of voluntary starvation, both intended to bring about death, and/or intended to bring about political change by being willing to die for a cause.

            Starvation, or fluid restriction, or both are ways to end one’s life that are entirely legal and within your control, assuming you retain your cognitive capacities and/or have supportive friends or family involved. For some people, in some situations, this might be ideal. Dr. Bossypants likes to eat, so voluntary starvation is not among her top choices, but things change. It is good to know this option exists.

Hypothermia

            Like starvation, hypothermia can bring about a chosen death. To involve others would require a kind of orchestration that seems daunting, but as a way to end one’s life alone, it has some appeal to a certain curmudgeonly set of folks. If you’re serious, do your research. If this were the only option for Dr. Bossypants, it would involve serious inebriation beforehand.

Asphyxiation

            In his best-selling book, Final Exit, Derek Humphry describes a combination of sleeping pills and a clever way to asphyxiate yourself after falling asleep. This is a gentle and efficient way to end your life. I won’t repeat the steps here, but I encourage people to get a copy of this book. His tone is brusque and businesslike, but the information is invaluable. There are other books, organizations, and sources for this important information. Dr. Bossypants will list those in upcoming blogs.

Information is not the Obstacle

            Dr. Bossypants wrote this particular blog more to rattle people than to actually spell out the steps necessary for a gentle, well-planned death. This explicit information is readily available, although some of the kindest, most appealing means are not. To move from a distant philosophical position to an active, prepared position is far harder than anyone imagines. The previous blogs explain some of the reasons we are so reluctant and afraid. But bottom line: it is unethical and cruel to inflict unnecessary suffering on sentient beings. This includes one’s pets, one’s loved ones, and oneself. Bodily autonomy—the most basic of freedoms—means it is ethically permissible and sometimes wise and humane to gently bring an end to one’s own life on earth. Further, we should have the right to ask for assistance when necessary.

Thus ends a difficult blog.

Graceful Exits: Blog 6, Culture and Religion

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying.Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

It doesn’t seem fair, but people who thoughtfully choose to end their suffering or choose death because they are ready to die not only have to deal with their own biological and psychological fears of death, they also have to deal with legal, family, cultural, and religious dimensions. Depending on belief systems and circumstances, others might judge them as brave or cruel, sinners or saints, cowards, criminals, or highly evolved human beings. There are wide variations in current and historic opinions about people who consciously end their earthly lives.

In The Biology of Death (the article mentioned in the last blog) Raymond Pearl wrote, “Man’s body plainly and palpably returns to dust, after the briefest of intervals, measured in terms of cosmic evolution. But there is nothing in this fact which precludes the postulation of an infinite continuation of that impalpable portion of man’s being which is called the soul. With the field thus open we see some sort of notion of immortality incorporated in an integral part of almost all folk philosophies of which any record exists.”

Royal mummies (who, by the way, have been dead for a very long time) were recently relocated in Egypt with much pomp and circumstance. In the USA, carefully selected sentinels guard the tomb of the unknown soldier, 24/7, 365 days a year, regardless of weather or attacks on the Capitol. Historically, the Apsáalooke tribe suspended a dead person in a tree to allow predators to remove the flesh. Later, the bones were placed in a ravine.

Being socially oriented, creative creatures, humans have developed religious, philosophical, and cultural practices that include all sorts of exciting or scary after-dying scenarios and a multitude of questionable practices for preserving, honoring, or dealing with the shell left behind. Like most people, Dr. Bossypants has her own version of after-death existence (and her own preferences for how to return her body to its earthly components…but that’s another blog). These topics are relevant to end of life choices because landing in heaven or hell, being reborn to reap some karma, rewards, or damnations—all might hinge on our actions or nonactions in this life.

Some forms of suicide are condemned in certain cultural practices or religious doctrines, and the history of suicide reveals ludicrous, brutal punishments. The bodies of people who died by suicide were mangled, dragged and/or tortured. Burial in church cemeteries was denied. Families were shamed and denied rights and assistance. In many Western cultures, neither church nor state has historically endorsed bodily autonomy.

From a government perspective, your life is not your own. Even on death row, lawmakers try to ensure that condemned people are not allowed to die at their own hands. It is the government’s right to kill people–not the people themselves. Therefore, in some senses, killing oneself is a political act. It is an assertion of rights many governments do not endorse.

Following suit, many religions condemn ending one’s life as sinful–in some faiths, very, very sinful. But only in certain circumstances, as we’ll note below.

Even if you aren’t a member of a faith system with harsh judgments, in our culture, suicidality is often seen as an indication of mental illness or some related kind of deficiency. This is not the best way to consider suicidality. In many cases, it isn’t even accurate. The reality is that almost everyone considers suicide when in dire straits or terrible pain. It is a normal human response, and depending on motive and circumstances, may be entirely rational.

Suicide as an act of mercy

In contrast to the condemnation discussed above, some chosen deaths are elevated as heroic. Humans take extreme risks or even knowingly give their lives for altruistic reasons. These deaths, even when willfully chosen, are not generally condemned. Some forms of self-sacrifice that predictably end in death are elevated. Examples include soldiers throwing themselves on grenades or monks burning themselves to death to protest injustice. The story of Christ on the cross, dying willingly for a higher cause, is perhaps the most well-known instance of someone choosing to die when there were alternatives. As the Bible says, “Greater love hath no man than to give up his life for a friend.”

In many cultures, the rightness or wrongness of ending one’s life comes down to motive. If it appears that people ended their lives for the sake of others, many modern cultures generally approve, and religious indictments are usually withdrawn. In fact, in some belief systems, those who die for socially or religiously sanctioned causes have a direct path to heaven and an extra-nice afterlife. But of course, we simply do not know, and the unknowable is hard for humans. From a website called Zen stories to tell your neighbors:

The Emperor asked Master Gudo,

“What happens to a man of enlightenment after death?”

“How should I know?” replied Gudo.

“Because you are a master,” answered the Emperor.

  “Yes sir,” said Gudo, “but not a dead one.”

Even though religious authorities and theologians vehemently disagree on how God views suicide, most acknowledge the absolute authority of God, or their deity of choice, so God, not the government, priesthood, or even Dr. Bossypants will be the ultimate judge. Some might want people to burn in hell for killing themselves because of the enormous pain they caused, but it isn’t up to us. Some might admire the grandmother in Yemen who starved herself to death so her granddaughter could eat, and thus may hope there’s a special afterlife for her, but again, it is simply not our call.

Thou dost protest too much

People who are neither disturbed nor unhappy are capable of making thoughtful, rational decisions to end their lives.  So, is the threat of hell a good suicide deterrent? In some cases, maybe. But it is far more likely that guilt trips and harsh judgments force the suffering and misery underground, with suicide attempted or completed impulsively and secretly. Dr. Bossypants believes that people have the right to end their lives—and to seek compassionate assistance if needed–but often death is not the best or only option available to address the pain and torment.

Ironically, if we de-pathologize suicide and instead acknowledge that humans are responsible for decisions about their own bodies and lives, perhaps fewer people would believe that private, violent suicides are their only option. They could talk openly about their urges or wishes to die. The saying, “Suicide is a permanent solution to a temporary problem” is only partially true. Death is permanent from our vantage point, but some problems are, or seem to be, permanent as well. Loved ones and professionals could help problem-solve and seek alternatives. In some cases, a premature death could be avoided. In others, the ending of one’s life could be far less traumatic, surrounded by sad but understanding loved ones.

There are many reasons and motives for suicide. In some cases, suicide seems to be weaponized—it is the ultimate expression of anger or despair aimed at loved ones or the world in general and thus causes guilt, trauma, anger, and deeply conflicted sadness. The more we stigmatize, dread, and pathologize suicide, the stronger we make this weapon.

Cultural, legal, and community support

We aren’t very good at accepting our own mortality. Accepting the fact that other people have the right to choose to die can trigger our fears of loss, grief, and death. Despite the complexities, Dr. Bossypants imagines a world in which everyone lives life to the fullest, and everyone is invested in helping each other live life to the fullest. But within this imagined world, death is accepted as natural, not to be feared, and in certain situations, an option to consider without shame. Legal, compassionate assistance would be available with minimal cost and no complicated, unkind obstacles.

When we seek the assistance of a kind veterinarian to end the life of a suffering beloved pet, our hearts break, but we know we are doing the right thing. The heavy judgments leveled by government or religion at those who choose their own timely and gentle deaths are unjustified and inhumane. They come from a desire to control, not from compassion or common sense.

Family Support

The resistance that arises in family members when a loved one decides it is time to die often does not come from a desire to control; it comes from anticipatory sorrow and a longing to hang on, avoiding the final good-bye. That’s a tougher thing to negotiate, but given time to consider the alternatives, many loved ones are able to put their grief on hold and offer loving companionship in the dying process.

As Oscar Wilde wrote, “Yes, death. Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one’s head, and listen to silence. To have no yesterday, and no tomorrow. To forget time, to forget life, to be at peace. You can help me. You can open for me the portals of death’s house, for love is always with you, and love is stronger than death is.”

Graceful Exits: Blog 5–Biology and Psychology

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying.Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

When Dr. Bossypants was diagnosed with a rare and aggressive form of cancer, she was shocked. Dear readers, with my family history, I must admit I’d planned to die of a heart attack later in life. This was all wrong. Cancer? Chemo? Death? Not me. Not now. I hadn’t done enough good in the world. I had family, friends, grown children who still needed me. I did not want to get sick and die. But then, who does?

Until this wake-up call, I’d been a bit cavalier about my own death. I’d had a wonderful life, and I honestly thought I was at peace with dying. But then I had a chance to test that out and found it wasn’t quite true. As Dr. Bossypants has pointed out in past blogs, our view of death is influenced by commerce and medicine, but our reactions to aging and dying are also written in our genes.

Though Anais Nin claimed that people living deeply have no fear of death, I beg to differ. As self-reflective, biological beings, we are highly likely to fear death. We are fearfully and wonderfully constructed to live a complex life and then die, but avoidance of pain and death are part and parcel of our intricate design. From an evolutionary perspective, we are predisposed to reproduce and strive to live long enough to insure the survival of our offspring.

Heredity and environment interact to determine how long a given individual lives, but increasingly, humans have tinkered with the environmental side of that equation and have succeeded in a modest rise in average lifespan. In 1921, in The Scientific Monthly, Professor Raymond Pearl wrote, “Probably no subject so deeply interests human beings as that of the duration of human life. Presumably just because the business of living was such a wonderfully interesting and important one from the viewpoint of the individual, man has endeavored, in every way he could think of, to prolong it as much as possible.”

If avoiding death is natural, then one might argue that people who consider ending their lives on their own terms are acting unnaturally. But Dr. Bossypants believes this is not true. Absolutely not true. Human evolution has enabled us to control biological urges that, if given full reign, would be destructive to ourselves or our communities. For instance, even though some people are wired to gobble down unlimited amounts of sugar and fat, most strive for moderation. We do not reproduce indiscriminately—using many thoughtful strategies for family planning—and with a little training, most of us do not urinate or defecate the minute we feel the urge. Dr. Bossypants forces herself to stay awake when in unpleasant meetings or conversations, even when she is exhausted and bored out of her mind and falling asleep would be the biological thing to do.

There are endless examples of how humans learn to alter what they would otherwise “naturally” do. I put quotes around the word naturally because while we are subject to our biological, genetic urges, our natural state as human beings now includes our ability to think in projective, abstract terms. Therefore, Dr. Bossypants claims this: it is also our natural destiny and duty to use reason to consider our lives and deaths. We are uniquely endowed with consciousness; we are able to consider and balance the various forces that come into play as we deal with our own deaths. For humans, biology is not destiny. Consciousness is destiny. We have the privilege and responsibility to make informed, reasoned choices, even in the face of pressures from others and fears within. And even in the reactive throes of primitive and unreasoning biological urges to avoid death.

Psychology

Humans are nothing if not contradictory. As I faced my cancer diagnosis, my imagination ran wild. I could see myself heroically enduring endless painful treatments to stay alive long enough to finish the passive solar house I’d designed—and then dying tragically as the last coat of paint was applied. I also could see myself (again heroically) refusing treatment because it was hopeless and there was no point in prolonging the inevitable. I could imagine my funeral. I could imagine my family’s grief. This was like swimming in ice water. Numbing. In the long days before surgery and staging, I read research articles obsessively and cried frequently. Psychologically, I was fully activated around this disease, considering what I might need to do to stay alive or die with courage and elegance.

The word psychology literally means the study of the psyche, and psyche means soul, spirit, or innermost being. Humans are likely the only species with the ability to study and observe themselves in endless loops. We can watch ourselves watching ourselves. Since the dawn of human consciousness, we have been able to view ourselves from arm’s length. And we can imagine ourselves into any situation. You don’t have to go to the kitchen to imagine yourself in the kitchen. In the privacy of your own mind, you can see yourself delivering a brilliant public address or a scorching retort to a rude neighbor.

We can imagine ourselves across the vast array of human possibilities: Rich, poor, healthy, ill, influential, foolish, witty, boorish…you name it, we can imagine it. We can also use our minds to calm ourselves or frighten ourselves, enrage ourselves or pacify ourselves. We can tell tall tales so convincingly that others believe we are telling the truth. If you stop to think about it, these powers of the mind are astonishing.

Given our ability to self-reflect, it is no surprise that our own demise takes on far more weight than the simple biological avoidance of pain and death shared by all living creatures. As I experienced, it is possible to imagine your own death and get very emotional. For the majority of us, under ordinary circumstances, the emotions are predominantly fear and sadness, sometimes tainted by anger. But for those in chronic pain, those suffering from severe mental problems or dire life circumstance, or those simply tired of life, imagining death can bring a sense of longing or relief.

Stories and experiences of death can add to the mindsets we have about death. With such powers of awareness and imagination, is it any wonder that humans experience a fear of death even when they are young, healthy, and likely many decades from their demise? It is the final unknowable destination, a magnet for imagination, and as noted earlier, a cash machine for big businesses. Until we die, we cannot actually know what it’s like to be dead, but we can imagine it. It makes for many gripping narratives, best-sellers, popular movies, and binge-watched TV shows.

Grief and loss also play a large role in our psychological views of death. Though we don’t know what it’s like to be dead, we do know what it’s like to suffer the loss of loved ones. When our loved ones die, it leaves physical and psychological holes in our lives. The level of pain and trauma caused by the death depend on the age and circumstances. In cases of advanced age and severe limitations, the death might be less wrenching than accidental or sudden deaths.

We know the pain for those left behind, so when we consider dying ourselves, we can imagine and experience a sense of sadness for the pain our death will cause those we love. This adds to the complexity and deep emotionality people face when they consider choosing to end their lives. However, there are increasing numbers of stories of planned deaths that include the family lovingly surrounding and supporting the one who has chosen to die.

A colleague of mine found he had advanced lung cancer. He was an insightful and articulate psychologist, open about his struggles. After a couple of years of palliative care, he knew his time was very short. He obtained a lethal dose of phenobarbital without disclosing how and let his family know he would like them to be there when he died. The problem wasn’t willingness, it was distance. By the time his children arrived from far flung reaches of the planet, he could no longer swallow well enough to give himself the lethal dose.  He was deeply distressed and in significant pain, but he lacked an effective way to end his life. He lived, mostly unconscious, for three more weeks. His children had to go home. His final wishes were scuttled because our laws don’t allow for the gentle injection by a skilled professional in most states, and he had waited too long.

Our life trajectories are both predictable and unpredictable. Dr. Bossypants would never assert that any set of personal circumstances automatically means someone will want to choose to die. We each have moral obligations to ourselves and others. Sometimes, we will decide we should stay alive for the sake of others and ourselves, no matter what the emotional or financial costs and no matter how steep the downhill trajectory appears to be. But other times, we may decide it is time to die. While the government and loved ones have vested interests in when and how people die, ultimately, this choice is an individual right and responsibility.

Because we are such amazing imaginers, we can suffer a great deal with anticipatory loss and grief. Some are inclined to engage in such imaginings far too often than is good for them, but others find such anticipation to be intolerably painful, so they err the opposite direction and refuse to consider even basic practicalities. As the comedian, Steven Wright, once said, “I intend to live forever…so far, so good.”

Contemplating the rights and obligations of autonomy is a heavy, thorny, complex topic, even under the best of circumstances. Further complicating the topic, Dr. Bossypants wishes to point out how hard it is for humans to trust the rational part of their brains. But we must; trusting the emotional side of our brain exclusively is like peddling a bike with one pedal or only rowing on one side of the boat. We need the balancing force of rational thought and informed conversations.

Even with all the uncomfortable emotions, it can be helpful to talk. It takes courage to engage in loving, thoughtful conversations about when and how to die, and many people strenuously and adamantly refuse to broach anything even approaching this subject. That’s their right.

Dr. Bossypants hopes that this series of blogs will help start or continue such conversations and introspection, but no one is required to talk or think about anything they don’t wish to talk or think about. Clearly, the door to such deep personal matters opens from the inside. 

Graceful Exits: When, Why, and How to Die #4

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying.Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

The adjustments required to age without whining and to die without a sense of failure are difficult in and of themselves, but they are made far worse when cultural values run heavily to overvaluing youth and “saving” lives at all costs. Dr. Bossypants tried to lift the veil of shame promoted by big business in our last blog. Now she turns her wrinkled brow and piercing gaze to the vast enterprise we call modern medicine.

Even before the Covid crisis, healthcare was one of the most fraught issues on the global radar. Is basic healthcare a privilege or a right? How are our medical dollars spent? Should providing such care make people rich? Should pharmaceuticals make people even richer? How many lobbyists are enough? Who deserves the more intensive and expensive treatments? Is basic nutrition a legitimate component of healthcare? These are fascinating and divisive quandaries, but they are only tangentially related to the main focus of these blogs: the right to die on our own individual terms.

 In future blogs, Dr. Bossypants will consider psychology, biology, and religion as they interact with our widely shared fear of death, but in some ways, the source(s) of human avoidance of death is a chicken and egg question. There’s little doubt that as a general rule, people don’t want to die, and they don’t want the people they love to die. This has paved the way for not only overactive commercial efforts, but also for medical research and practices that may actually contribute to human suffering nearly as much as they do to human wellbeing.

The Medical Mandate: Hippocratic Oath Run Amok?

Healthcare professionals of all sorts have ethics codes, personal and religious values, and legal constraints that guide their practices. These are highlighted and augmented as people are enculturated into their professional identities. Most people have heard of the Hippocratic oath and likely assume that healthcare professionals (other than dentists) are required to “Do no harm.” Just kidding. Dentists are included. Dr. Bossypants has an uncle who is a dentist. That was a private joke.

So, back to the topic. The original Hippocratic oath has been tinkered with repeatedly over time. Translations vary, and certain politically loaded phrases have been inserted or omitted. This reflects the fact that human morality and professional ethics have an evolutionary fluidity that responds to scientific discoveries and political pressures. The real Hippocratic oath is much more nuanced than the simplistic “do no harm.”

Most of us know a fair number of physicians and other healthcare workers personally and/or professionally, but it is unlikely you’ve had “the talk” with any of them. Do you know their views on suffering and death? We assume they favor neither and have devoted themselves to fighting both. This can be a problem because the frame then dictates that death is the enemy—something to be fought, feared, and avoided.

Even though Dr. Bossypants understands that frame, it is out of touch with reality, and it is wrong. Yes, suffering sucks, but death is not the enemy. It is a natural outcome of being human. When people are near death and medical interventions pull them back, their lives should be considered prolonged, not saved. The possibility of a good, humane death versus prolonging the pain or struggles for a short extension of life should always be openly examined.

As we noted in earlier blogs, physicians are slowly coming around to favoring the legal right to be of assistance in dying, but it’s a struggle for many. Healthcare professionals are dedicated to making lives better, healthier, and longer. For many, healing is a calling. They strive to do no unnecessary harm, and most people think of death as harm. There’s some irony in all this. Neurologist and author, Oliver Sacks wrote, “It is the fate — the genetic and neural fate — of every human being to be a unique individual, to find his own path, to live his own life, to die his own death.” Part of responsible health care should involve providing painfree and dignified ways to die when the time comes. And with dogged determination, Dr. Bossypants will continue to bravely point out: The time will come.

Philosophy, Morality, and Medicine

            In the fascinating domain of bioethics, a concept called “the technological imperative” is often discussed. In one version, this means if we can do it, we should do it. Applied to medical interventions, this could mean that because we can keep a person in a coma alive indefinitely, we should. Because we can use chemo to control the tumor for two more weeks, we should. Because we can revive a person with extensive brain damage, we should. Given human ingenuity, it is assured that we will continue to develop ways and means to keep severely injured, massively disabled, and/or terminally ill people alive longer than they would have been without these interventions. In many contexts, this is a wonderful testament to the human spirit. But it is not a mandate. It is an option. The real moral mandate is respect for human autonomy.

            People have the right to request life-extending medical procedures, and they have the right to refuse these interventions. They should also have the right to request assistance to die (though in many states, this last request will be denied). There are significant physical and economic costs to consider, and everyone has the right to engage in thoughtful conversations with professionals and loved ones to weigh the options. Just because a liver transplant or life on a ventilator is possible, it is not a moral obligation to undergo the procedures that could extend life. Loved ones occupy a certain space in these considerations and most of us value and are influenced by their input, urgings, and permissions. Professionals should provide whatever information anyone wants or needs. It is not morally correct for them to urge anyone to stay alive; it is not morally correct for them to urge anyone to die; and it is not morally correct for them to withhold information or lie about anyone’s condition.

On the other hand, should physicians be required to be of assistance if someone has chosen to die and asks for their help? Of course not. They should neither be required to help nor restrained from helping. Some physicians believe that the short version of the Hippocratic oath, do no harm, disallows them from helping someone die. But how do we define harm? Is it harmful to cause prolonged pain? Is it harmful to force someone who wishes to die to instead lay in a bed, unable to move, sometimes for years? Death is the natural outcome of life. Ernest Hemmingway observed that every human life ends the same way. It is only the details of how the person lived and how the person died that distinguishes one from another. Some people will choose to live for as long as they possibly can, using every method available. But some will choose otherwise. Within their worldview and life experiences, prolonged life is not their highest value.

Qualities of Life

            As mentioned in previous blogs, my years as a rehabilitation counselor taught me a great deal about the value of life—even life with significant restrictions and chronic pain. I respected and admired the hard-fought daily battles my clients faced to live as naturally and comfortably in their limited bodies as possible. Over the time I served them, a few chose to end their lives, presumably because the difficulties were too daunting, or they were simply tired of life. They did not inform me ahead of time. If they had, or if I had even suspected they were planning to end their lives, by law I would have had to intervene. They knew this. Thus, they had to enact their deaths alone and in ways that seemed risky, painful, and traumatic.

This quandary has been dramatized by Hollywood many times. For instance, consider the attempt to die by Hilary Swank in the movie Million Dollar Baby. Paralyzed from the neck down, Swank’s character tried to bite her tongue so deeply that she would bleed to death. In the movie, no medical professionals would listen to Swank’s requests to end her life. In fact, legally, they probably could not have helped even if they had been willing.

In the last blog, Dr. Bossypants pointed out that humans are terrible self-forecasters. Many of us like to make fun of weather predictions, but meterologists are a lot more accurate about the next day’s highs and lows than people are when they try to forecast what they might be worse than death for them.

In one study, psychologists Dan Gilbert (of Harvard University) and Tim Wilson (of the University of Virginia) observe that most (healthy) people say that if their quality of life is low, they would rather not have medical interventions designed to give them more time. “However,” as the American Psychological Association’s website notes, “when medical researchers interviewed people who were slowly dying and experiencing a very low quality of life, such people almost unanimously reported that they would go to great lengths to add even a few days to their lives.”  

This worries Dr. Bossypants. Why? Because we are all susceptible to the forces at work on us. First, we want to believe we will live forever—other people die; not us. So when we are near death, we’re shocked and have no game plan. Second, big business has invested heavily in making us ashamed and afraid of dying. Third, the medical world is over-identified with prolonging life and less equipped to provide aid and comfort in the dying process. These are huge factors, but of course, there’s more. We have yet to tackle religion, government, psychology, and biology. We are, indeed, complex beings. Stay tuned.

Graceful Exits: When, why, and how to die #3

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying.Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

At his request, Linda helped her stepfather die. Some would say she murdered him. Walter was 87; his hands weren’t steady enough to give himself the injection, so on a rare visit to her childhood home, Linda agreed to help him end his life. Typical of this successful retired engineer, Walter had everything ready.

He’d decided not to burden Linda with his request ahead of time. When Linda arrived, they reminisced a bit. Since they lived thousands of miles apart, they’d not seen each other for years. Linda later told me she was shocked at how old and disabled Walter had become, but equally surprised at the clarity of his thinking. As Walter explained what he needed from her, Linda admitted she freaked out a little inside, but Walter had picked the right stepdaughter. He knew Linda was both gutsy and compassionate, and he hoped these attributes would predispose her to agree to help. They did. He had a bottle of Shiraz, Linda’s favorite wine, a few sleeping pills, and a syringe of phenobarbital. He knew that some people who tried to swallow enough barbituates to die sometimes threw up instead, and he didn’t want to die alone anyway.

Almost immediately after Linda calmed herself and agreed to help, Walter took the sleeping pills with the wine they were sharing. As Walter grew drowsy, he told Linda how much he had loved her mother, what a great life he’d had, and how grateful he was for her help. Then he drifted to off sleep.

Linda steeled herself, pulled on the latex gloves Walter had thoughtfully provided, gave him the injection, held his limp hand, and waited as his breathing slowed and stopped. His eyelids twitched some, but it was a peaceful death. She put the gloves in her purse, closed the door, got in her car, and drove away. Far, far away. Walter did not live in a state that would look kindly on what Linda did. As she told me the story two years later, she admitted she still has fears of being tried for murder. “But I’d do it again,” she said. “He was so grateful. So ready.” Walter had outlived his wife and had no close relatives. He’d endured chronic pain for years because he didn’t like what the painkillers did to his mind. “He was tired of hurting, tired of being lonely, tired of life. He’d thought things through, and he was ready to die,” Linda added. “I’m so glad he didn’t have to use a gun or die alone.”

Fear of death: Where does it come from?

Death is the final human experience; every last one of us will die. But for something so common, death remains a frightening mystery many would prefer to ignore. Being afraid of the unknown is natural and understandable, but there are forces in modern culture that exacerbate our fear of death and add a monster-sized dose of shame to the aging and dying process. Big business and medicine are significant external forces, but of course, we have to consider religion, biology, and psychology as well.

In this and future blogs, Dr. Bossypants will mull these forces over with you. It won’t be easy, but we need to turn some things around, open up the topic, and get as comfortable as we can with every aspect of our mortality. There are certainly extremely private people among us who would prefer to die alone, but most people express a hope to have loved ones nearby as they die. And when faced with the imminent death of a loved one, most of us want a chance to say goodbye, and many want to be present for the departure.

And finally, it is unlikely many people want to suffer unnecessarily. So what makes this so crazy hard? First, let’s consider the huge monetary gain from making us embarrassed about aging and fearful of death. We’re talking some big-ticket items!

Industrial strength resistance to death

Francis Bacon said, “It is as natural to die as it is to be born.” It may be natural. It may be inevitable. But not many of us are willing to accept or seek death, and as we’ll discover in our explorations, those who do are often labeled criminal, insane, or heroic. In Walter’s case, all labels might apply. Was Walter criminal? Yes, weirdly, he was an accomplice to his own “murder.”  Was Walter insane? Some would argue he was diagnosably depressed just because he was ready to end his life. Was Walter heroic? Yes, he acted to save himself and loved ones much pain, trauma, and expense.

Like sex and love, the fear of death and the longing to stay vital and alive provides endless plotlines for literature and theater, and a golden opportunity for businesses to promote merchandise. Sex sells, but so does the fear of dying. Increase the fear: sell more products.

Both health enhancing and life prolonging products are advertised endlessly. As my mother’s body began its steep decline, she surreptitiously ordered a few miracle cures from shady companies. She was then completely inundated with brochures, phone calls, and special offers, all promising to cure her neuropathy, her dizziness, her lack of appetite (or whatever distressing symptoms she was experiencing) and restore her to perfect health. It was a cruel waste of her money and energy, and her loved ones did their best to discourage this misplaced hope, but of course, we are all susceptible to believing the lies we wish were true.

Any effective marketing stirs up primal human longings and fears and then embellishes and exaggerates. Even if we may not initially believe we need a product, the ads convince us that we are missing out. The underlying message is that we should desire the outcome being promised. If we don’t desire it, there is something wrong with us. We should want to live for as long as possible, and we should strive to keep our loved ones alive for as long as possible, no matter what.

These shoulds weigh heavily on families. My beloved mother-in-law, Paula, developed Alzeimer’s disease and suffered slow decline into complete dependency and cognitive nothingness. But her heart continued to beat. Until an infection provided the final push, she lived unknowingly in a rocking chair and a bed. Her family members supported each other and cried a lot as we let the infection run its course. We loved her fiercely and knew her well enough to know it was time to let go. But the shoulds still hovered nearby. Somehow, the idea that taking extreme measures demonstrates love has infiltrated our cultural thinking. The shoulds are merciless.

The word should often signals a moral mandate. Staying alive at all costs or trying to keep one’s loved ones alive as long as possible are not, I repeat, not moral mandates. But insinuating that they are is good business. Regardless of emotional, physical, and financial costs, everyone should strive to keep themselves and their loved ones alive. Failing to do so is “shameful.” When Linda helped her stepfather die, she not only stepped over a legal line, she stepped over this faux moral mandate. “Sometimes, I think I should feel guilty,” she admitted. “But Walter did the heavy lifting. I hope, if the time comes, someone will do that for me.”

The lure of eternal youth

Products and procedures that promise youthful appearances are big business (far upwards of 16 billion a year in the United States). Wrinkle removing creams, hair implants, and face lifts do not enhance health or prolong life. They simply disguise the aging process and drain our savings accounts. They promote the notion that signs of aging are ugly and shameful; we should be embarrassed when we don’t try to hide them.

Not only does this shaming lead to purchasing, it leads to denial and inhibits healthy conversations about aging and dying. According to the ads, aging is something to disguise, and death is a failure.

Caroline and Pam are pseudonyms for some old friends of mine. We all bemoan aging, but my friends handle things differently. Caroline buys the latest fashions, claims she has single-handedly kept stocks in Botox high, dyes her hair, wears a lot of make-up, and has endured a number of cosmetic surgeries. Pam has gone gray, refuses to pluck her chin hairs, clip her nose hairs, or manage her increasingly wild eyebrows. She owns an impressive collection of hiking boots and handguns. You might assume Caroline is the one more afraid of aging and death, but they’re both somewhere in the middle.

“None of that stuff Caroline does makes one damn bit of difference,” Pam often says. “She can hide her age in her nips and tucks, but she’ll die when she dies. Just like the rest of us.” Caroline counters with, “I don’t want to look old. But you won’t catch me packing a gun. If someone decides to shoot me, at least I’ll look my best.”

Pam hikes with her pistol and trusty dog and finds solace in nature. She believes the success of the advertising industry in Caroline’s life is due in part to the fact that most of us are increasingly disconnected from nature. The lives and deaths portrayed in the entertainment industry and in video games are far from the natural truths and realities of life and death. John Muir, the famous naturalist, said, “Let children walk with Nature, let them see the beautiful blendings and communions of death and life, their joyous inseparable unity, as taught in woods and meadows, plains and mountains and streams of our blessed stars, and they will learn that death is stingless indeed, and as beautiful as life.”

Nice sentiment, but most of us can’t go quite that far. It is natural to age, decline, and die. But most of us don’t think of death as stingless or beautiful. Dr. Bossypants bows in admiration to the actor, Frances McDormand, who without make-up or Botox, ages frankly and honestly in front of us all. She recently said, “My position has always been that the way people age and the signs that we show of aging is nature’s way of tattooing. It’s natural scarification, and the life you lead gives you the symbols and the emblems of your life, the road map you followed.”

Aging is stressful, disappointing, and challenging, but it isn’t your fault. It just is. Don’t let the advertising industry convince you otherwise. There is nothing inherently wrong with trying to look and act younger (Dr. Bossypants is especially fond of purple hair), but don’t let it feed your fantasies of eternal youth, rob you of the pride of aging openly, or stifle the conversations we all need to have with ourselves and our loved ones.

Graceful Exits: When, Why and How to Die, #2

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying.Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

Grappling with Autonomy, cont.

Cyborgs and superheroes aside, to be human is to live in a time-limited and vulnerable body. It involves a lifelong negotiation between dependence, independence, and what Dr. Bossypants likes to call interdependence. We need each other, but we don’t want those needs to overcome our right to live our lives as we see fit. In a previous era, Dr. Bossypants was a rehabilitation counselor. It was humbling to witness the courage of people with severe injuries and disabilities as they struggled to graciously accept the assistance they needed while preserving both autonomy and dignity.

Some of these amazing people became my friends. They often lived lives shortened by their health challenges. Some assessed their situations and chose to die rather than endure the pain and limits. For instance, after years of dealing with unhealable and painful tumors caused by skin breakdowns, Michael (a pseudonym, of course) rolled himself into his front yard on a sunny day in June and shot the back of his head off. Dr. Bossypants firmly believes Michael had the right to make that choice, but she is deeply grieved that this was the method he was forced to use. But he had few options. Had he revealed his desire to die, he would have been reported and hospitalized, and perhaps even medicated against his will. Had he asked a physician for a prescription or injection, or other forms of assistance in dying, he would have been requesting something that is illegal. Perhaps if Michael had been able to talk over his options openly, including the option to end his life, he would have chosen a different option, or an easier, gentler way to die.

As a culture, we are obviously ambivalent about bodily autonomy. Autonomy is defined as the right of self-governance. Bodily autonomy includes the right to limit who touches you and how you are touched, the right to offer or deny the use of your body for science, profit, or experimentation, and the right to be protected from bodily exploitation. Ironically, it also includes the right to abuse our own bodies; we are allowed to eat things that are terrible for our health, sleep too little, or repeatedly expose ourselves to toxins, such as too much sunlight, smoke, or alcohol. (Small amounts of dark beer should not be included in this list.)

For the sake of fashion, we can adorn our bodies with piercings and tattoos or seek corrective or cosmetic surgeries to hide, remove, or add distinguishing features. Of course, many of us do not have the money necessary for facelifts, nose jobs, liposuction, breast enhancements, or hair plugs, but if a person does have the means, most cultures allow for these expressions of bodily autonomy.

As science advances, people increasingly have options to use their bodies, or parts of their bodies, for the common good. They can volunteer for drug trials. Kidneys, portions of livers, bone marrow, blood—all can be offered to save lives. Except in rare situations, we do not cross the line and force someone to use her body for the sake of someone else. Your sister or child may die if you choose not to donate a kidney, but there are no laws requiring you to make that donation.

We can also exercise bodily autonomy when we consider life-extending surgeries or treatments. Some, like chemo for advanced cancer, might provide an extra few weeks or months of life. Others, such as heart surgeries, might extend life by decades. The principle of bodily autonomy allows people to request or refuse these treatments. Dr. Bossypants believes such requests or refusals should be informed by frank discussions with family, loved ones, and well-informed medical professionals. Sadly, for many reasons, this is often not the case. These conversations are among the hardest humans will ever have. How do you even approach such things? It isn’t easy, so we often shy away and leave it up to fate, God, or the doctors.

Rational adults have the right to make informed choices about their bodies, including their deaths

Medical professionals have historically been accused of violating autonomy by trying to save lives at all costs without full disclosure or discussion. Even though it’s the inevitable outcome for all living beings, death is framed as a failure for medical professionals. Many recent authors have bemoaned this implicit bias in medical training and the continuing paternalistic attitudes that go with it. Letting someone die runs deeply against the grain.

In 1973, 25-year-old Dax Cowart was in an accident that burned him so severely he lost his fact, vision, ears, fingers, and much of his skin. Over the course of his extremely painful treatment, he begged to be allowed to die, but his right to refuse treatment was ignored, his attempts to kill himself, thwarted.

It was a huge fight. A psychiatrist called in to examine Dax ruled that he was sane and competent to make such a decision, but Dax’s requests were still denied. He lived through years of excruciating treatment, and eventually went to law school where he became a patient’s rights attorney. Throughout his life, he remained adamant that he should have been allowed to die.

Medical ethics courses often use Dax’s story to alert physicians to the quandaries they will face. In some circumstances, the right to refuse treatment is well-established, and since the 70s, in fits and starts, our culture has begun allowing terminally ill people access to medical assistance to end their lives, though even the most progressive laws are still quite restrictive.

Physicians’ views on their role in providing this assistance has slowly shifted, with a recent survey indicating a slim majority approving of such help–but only in these carefully circumscribed circumstances. In a recent Medscape article, Dr. John Bakos wrote, “The ability to rationally choose to end your life should be a protected right of every human.”

As we noted above, end of life conversations are often filled with dread. Nurses, doctors, social workers, counselors, pastors, loved ones—no one is exempt. We’re so afraid of saying the wrong thing that many important topics remain unexplored. In some situations, this leads to extended suffering and tragic outcomes. In the forum in the Journal of the American Medical Association Dr. Ashish K. Jha wrote, “We need to refocus our efforts toward end-of-life care so that we can better identify the needs of patients with advanced illness, and then offer intensive treatment when patients want it, help enable a more peaceful death when they don’t, and learn how to manage that transition.” 

As Dumbledor said to Voldemort in the Harry Potter series, “Indeed, your failure to understand that there are things much worse than death has always been your greatest weakness.” Yes, there are things far worse than a timely, humane death. Some studies asked severely ill people about factors that would trigger a wish for death. They named things like incontinence, inability to move, being fed through a feeding tube, or being kept alive with a ventilator or other machines. However, subsequent interviews revealed that while a subset of the respondents changed their answers as they adjusted to the deficits they dreaded, many did not. Writer Melissa Dahl noted, “Our future selves are frustratingly unknowable.”

If our future selves are frustrating, then the future selves and attitudes of our loved ones are likely to be full-on maddening. But this should not stop the conversations. It should stimulate and enliven them. If my daughters asked me what suffering I would or would not want to endure to stay alive a bit longer, my answers might change over time. The language in most Advanced Directives provides a starting point, but as Dr. Bossypants will repeatedly stress throughout these blogs: These are not one-off conversations. Many people fear being a burden, losing the ability to contribute meaningfully to their family or community, or losing the ability to feed, bathe, and/or dress themselves. The loss of dignity that goes with loss of bodily functions is also frequently named. And dementia is probably one of the most dreaded losses associated with aging.

To have these compassionate, sensible, and difficult conversations, we have to grapple with the notion of bodily autonomy as a human right and a moral obligation. We have the right to make choices about the ways we live our lives, the ways we treat our bodies, and the ways we age and die. We also have the obligation to make sure these are informed choices that take into account the needs and wishes of those around us.

In her famous poem, The Summer Day, Mary Oliver wrote, “Tell me, what is it you plan to do with your one wild and precious life?” and we just eat that up. We love mulling our wild and precious lives. But many of us resist the truth and implications of the line that comes just before: “Doesn’t everything die at last, and too soon?”

Yes, everything dies at last, and for most of us, it seems too soon. We are interconnected, autonomous beings, able to engage in conscious, thoughtful conversations and decision-making, but equally able to ignore our autonomy, deny autonomous choices to others, and engage in denial. Denial is an attractive but costly option. Battling death to the bitter end is also an option. There are many forces at work around and within us that make these appear to be only acceptable options. But they are not. Dr. Bossypants will bravely explore both forces and options in coming posts.

Graceful Exits: When, Why, and How to Die, #1

INTRODUCTION

This post is one of a series of posts wherein Dr. Bossypants explores that final task we all face: Dying.Consider yourselves warned: Being mortal is challenging, and death is a stressful topic. No doubt you will read these posts with some degree of sadness, despair, and denial. However, Dr. Bossypants sincerely hopes readers will consider such matters thoughtfully, and when the time comes to face our own death or that of a loved one, Dr. Bossypants hopes we can act with wisdom, compassion, acceptance, and bravery.

Grappling with Autonomy

They found my grandfather draped over the corral gate at 4:00 AM on a cold March morning in Montana. The little drifts of snow on his slumped shoulders signaled he’d been dead for a while. Calving season was in full swing. Granddad Ray had gone to check the cows and had not returned. He was 65 and had survived one heart attack ten years before. It had been serious enough that my father had to give up his dream of a college degree and come home to help run the ranch.

I was seven when my grandfather died. He was a loving presence in my life: a carpenter, mechanic, cowboy, electrician, plumber, painter, putterer—all skills required to keep a ranch going—which he did, with Dad’s help, until the day of his death. The funeral was huge. I don’t remember many of the details of the gathering afterward, but one thing stood out because it puzzled me for so long. The grieving grown-ups consoled each other by saying things like, “That’s the way I’d want to go.” And “He died on his own terms.” All I knew was that my granddad was gone, and he’d died by himself in the cold. This did not seem like something anyone would wish for. It has taken me 60 years of life and decades of professional training and clinical work to fully understand why the way he died was comforting to some of his mourning friends and family.

In rural western states, we tend to value our own version of independence and with some irrational exceptions, we amplify the value of autonomy. We’ll explore one of those exceptions from various lenses throughout this series: the right to choosing when and how to die. Not everyone wants this autonomy. In fact, there are those among us who would deny others this autonomy. Quite a few people don’t even want to give this issue a passing glance, and those who do want the right to die on their own terms face some serious challenges legally and psychologically.

Fast-forward fifty-seven years from my grandfather’s death. At an agonizing snail’s pace, the end of my mother’s life was drawing near. Her decline was painful to watch and impossible to discuss. Like many hard-driving high achievers, she found the loss of functioning and the betrayals of her body to be shameful obstacles she tried to overcome by force of will and denial. Her bladder gave out. Her bowels formed obstructions. Her neuropathy advanced and she fell so many times, we begged her to use a walker. By the time she conceded, she was too weak to make use of it. She hated the catheter, the immobility, and the need for help–all were experienced as humiliating indignities. She also hated looking in the mirror.

My mother’s resistance to aging and death robbed her of honest conversations. “I can’t believe I’m this old,” she’d say once in a while, but anything deeper than that was forbidden terrain. She clung to the notion that she could recover from the various ailments that come with age if she tried hard enough or found the right medicine. She was an easy target for the sellers of snake oil and magic cures.

Mom had lived much of her life with this same dogged defiance and it had served her well. She overcame childhood abuse and poverty, tackled the hardships of ranch life, survived early widowhood, became a successful realtor, put her children through college, and held things together. She was a force to contend with. She brought this attitude and energy to the aging process—aging was an obstacle to overcome. She was no quitter. To give up or given in to aging or dying was to fail.

The bad news for most of us, and especially for people like my mom is this: the decline associated with aging can sometimes be forestalled but ignoring the signals will not make them go away. As her decline continued, her physical pain and needs grew so intense that she reluctantly agreed to try hospice because of the services they could help us with. We didn’t use the term hospice, though; it was to be called comfort care at all times. We all knew Mom was dying, but it was not a topic she would talk about. After her last fall in the assisted living facility, she laid helpless for who knows how long? She was incoherent when they found her.

Over the next few days, she lost consciousness, but still her body fought on. She lingered another two long days and nights, completely unconscious, snoring an awful raspy snore through open dry lips. The family held vigil, reading to her, combing her hair, holding her hands, being present as we assumed she would want. But she died alone. Mom was a very private person. Mid-evening on the third day, those of us gathered wondered if she might might need some space to let go, so we all stepped into the next room, with the door slightly ajar. In the span of that five minutes, she took her last breath and let go. Her spirit brushed my shoulder as it departed. I slipped in to check on her and found she had died. “She’s gone,” I told my beloved family. We filed in to said goodbye to the thin, distorted shell she’d left behind.

Avoiding the tough conversations

In his book, Being Mortal, physician Atul Gwande helps readers understand the disconnect between medicine and mortality. He gently probes the encrusted layers of denial humans use to avoid thinking or talking about dying and death. This denial runs deep in the human psyche and is aided and abetted by advances in medical science that insinuate there’s a chance we can beat back or fully defeat most diseases and heal from most injuries. Denial is a widespread and time-honored way to cope, but like Gwande, I’m not convinced it serves us well in the end.

My childhood on the ranch gave me plenty of exposure to the life cycle of living beings. Everyone had a part to play. The cats were mousers, the dogs helped with herding, the chickens laid eggs until they aged out, and they were then stewed for Sunday dinner. Birth and death were constant companions. I was part of a culture that prides itself on being neighborly, honest, and generous, but also tough and self-sufficient. I sobbed myself to sleep when my 4-H lambs were sold to slaughter. I wanted my parents to let me keep the lambs, or at least pretend someone bought them for pets. My parents didn’t sugar-coat the truth. I’d played my role, raised the lambs, and won my blue ribbons. But they were nice fat lambs that would provide nourishment for others and money for my college fund. And that was that.

We were frank about the life cycle of the animals, but not about our own. My father died at age 44 during open-heart surgery. I was 19. Even as he was prepped for surgery, no one seriously thought that he might die. He didn’t have an up-to-date will or advanced directives. The closest our family ever got to end of life discussion included vague instructions that began with “If something ever happens to me…” and whatever followed was not specific guidance, but vague expressions of trust and love.

And what does this have to do with autonomy?

To a significant degree individual autonomy is defended in our country, but the notion that individuals could or should choose their own death is not widely accepted. Instead, like the mourners at my grandfather’s funeral, people dare to hope for a quick, timely, pain-free death, but most of us don’t claim or fight for the right to one. Many, like my mother, consider it shameful to be mortal or weak in any way. Death is an enemy to fight off, and battling to the bitter end is not only admirable, it’s sometimes framed as a moral duty. There are problems with this reasoning. Perhaps, in some situations, fighting to stay alive at all costs is morally praiseworthy, but in many cases, it’s neither praiseworthy nor required. Instead, clinging to life can cause unnecessary suffering. And framing death as a failure simply insures failure. We are all going to die.

But we cling to life. We cling for many reasons, some obvious, some less obvious. And not only do we cling individually, we force others to cling. We deny them medical assistance, honest conversations, and easier, more loving ways to die. Instead, we pile on denial and guilt, urging everyone to fight on, even in the face of the obvious eventual outcome. Dr. Bossypants has decided to dive in, write about mortality, denial, autonomy, suicide, and medical assistance in dying. In doing so, she hopes be of help in thinking such important matters through, or at least stir up a bit of commentary. For the coming weeks and months, there will be a series of posts addressing these related and sometimes difficult issues. Stay tuned, share, think, and stay in touch. This is an important conversation.

Toxic Femininity

Too much vitamin B6 can cause nerve damage. Too little vitamin B6 can cause nerve damage. Pretty much anything can be toxic in extreme expression or dosage. Life is always about balance. It’s regrettable that humans are such stereotypers. We want to organize our worlds into categories of things that seem alike and then keep everything boxed in, labeled, and inert. But life doesn’t work that way. Depending on endless factors and influences, we are more or less of any of our attributes in any given moment.

So let’s talk about one concept that can get very dangerous in extreme expressions: We’ll call it femininity (expressed as childbearing). In our present situation, only a woman’s body can take an egg and sperm, or an implanted embryo, and nurture it along until it becomes a fetus, and then, if all the other factors in play cooperate, the process moves along until a human baby is produced. Someday, this baby-making function will have a fully mechanized option, from test-tube fertilization to incubator fruition, and at that point, one might assume (and fervently hope) that every baby thus produced will be a deliberate, careful, conception and an eagerly anticipated addition to a loving parent (or parents)-in-waiting.

Presently, for the vast majority of us, conscious, deliberate baby-making is and should be an exciting undertaking, fraught with danger, but worth the risks. It is usually a voluntary undertaking. Yes, I know that sometimes, the production of babies, especially male babies, has been forced, or framed as patriotic. Fodder for Hitler’s war. An offspring to carry the family’s name and fortune forward…

But I digress. Back to our theme. Just because for now, a woman’s body is necessary to make a baby, it does not follow that baby-making is the definition of woman-ness or femininity. To squeeze the definition of femininity into that box is a form of cruel insanity. Toxic extremism. But that’s what we’re doing when we take away volition, deliberation, planning, and enactment of baby-making as an optional use of one’s body. Baby-production should always be a choice.

Abortion is not murder. It ends a process that began accidentally, or brutally, or without awareness. Pregnancy is a process. There are mechanized options at the beginning of the process. Fertilized embryos exist outside the realm of the female body. But a willing body is needed for this much-wanted baby. Of course, many people hope to use other people’s bodies for different reasons. They want a new kidney. A new heart. Eyes. Bone marrow. Liver. These life-saving desires require the use of another person’s body, but we do not legally require organ donations to save lives. We do not consider the death of someone who needed a kidney a “murder” because someone else failed to donate a kidney. Why should a woman’s body be singled out?

In an interview aired nationally, a woman who has decided that all pregnancies should come to fruition also declared that any woman who stopped the process for whatever reason, who said “no, I do not want to use my body to make a baby right now” should be killed. Dr. Bossypants has experienced low-grade nausea since that thoughtless and unnecessary broadcast–a horrific expression of woman-hating—perhaps the most virulent form of toxic femininity one can image. A hole is to dig. A woman is to make babies. A man is to war. A cloud is to rain. A mind is to judge. A heart is to kill: For such rigid insanities, Dr. Bossypants has no explanation–only great fear that hateful humans are going to continue down these destructive paths until they usher in extinction. The fight is to be whole, multi-dimensional members of the human continuum, tempering our extreme toxicities with maturity, respect, acceptance, courage, and compassion. The middle way is the only way.