We are in the midst of an existential crisis or cultural sickness, also known as an opioid epidemic. Increasing numbers of Americans are self-medicating with the hardest of hard drugs, prescription pain meds like fentanyl, which is 100 times more potent than morphine and many times more potent than heroine. More than 63,000 US citizens died from an overdose last year. More than a million OD’ed and lived. We have more opioid addicts in the US than anywhere else in the world despite the fact the opioids are widely available in many other countries over the counter. The problem is so severe that it has reduced life expectancy overall several years in a row. Happy people, people whose mental, physical and spiritual needs are being met, do not abuse prescription pain meds. These are deaths of despair. These are slow-motion suicides.
Parallel, but not as frequently discussed, is the public health crisis of direct suicide. 45,000 Americans took their own lives last year and 1.3 million made a nonfatal attempt. The suicide rate has increased 30% over the last decade and like the overdose rate, is particularly high among white Americans without a college degree. This group, in particular, is suffering from rising inequality and weakened social ties. Americans are more individualistic, more libertarian “I can do whatever I want” on both the right and the left, and more disconnected than ever before from community: marriage, organized religion, extended family, and meaningful employment. These suicides are also deaths of despair.
Loneliness plays a role. 1 in 3 Americans over 45 now identifies as chronically lonely, up from 1 in 5 a decade ago. And young people, despite being connected by technology around the clock, have the highest incidence of loneliness and suicide. Such that suicide is now the second leading cause of death for young people (15-34).
Despite its prevalence, suicide is widely considered to be tragic, and suicide prevention a top public health priority. Our social contract depends on at least this baseline agreement: that we look out for one another.
Americans consider the suicide of physically healthy and successful people suffering from depression, like Anthony Bourdain or Kate Spade, to be heartbreaking. Such deaths are routinely described in the media as “preventable” “tragic” and “alarming.”
When People magazine did a cover story on Bourdain and Spade this summer, it published the National Suicide Prevention hotline on its cover, and encouraged people feeling hopeless, helpless, or isolated, to call. There is evidence that therapy, anti-depressants, regularly attending religious services, and hearing the stories of others who have felt the same, but recovered, can help save lives.
Indeed, every world religion has traditionally condemned ending one’s own life, because it was understood as a form of violence or homicide. Even as it is now understood more compassionately, as the act of an ill person, suicide is still discouraged and prohibited.
Societally, we seem to agree that suicide is not the solution.
So, the message is clear. Or is it?
When it comes to physician assisted suicide, many Americans now flip the script. 73% support physician assisted suicide for terminally ill people.
Physician Assisted Suicide
We often think that people who consider suicide are suffering from severe, chronic mental illness, and some are, but taking one’s life, or considering it, can also be triggered by any adverse life event or psychosocial crisis: the death of a loved one, the loss of a job, sexual assault, bullying, even or especially, a devastating medical diagnosis.
Patients in the first three months of dialysis, for example, are three times more likely to take their own lives, and 15% of stroke victims consider suicide. We are told by its proponents that physician assisted suicide is not about despair, and yet we know that dying often produces despair, because death can be terrible.
In an era of increased awareness about unconscious bias and privilege, voters want to give providers unprecedented power over life and death decisions, and to make assisted suicide part of what doctors routinely do. This, despite the huge power imbalance between the physician, the insurance company and the dying person. Disability rights advocates, people of color, and the poor are the most vocal opponents of Physician Assisted Suicide (henceforth, PAS) because they understand how prejudice works and know who will be given this option first.
After California legalized “medical aid in dying,” the doctors of Stephanie Packer, a terminally ill mother of four, suggested switching her chemotherapy regime to extend her life. Her insurance company refused to pay for the chemo. They would, however, cover the cost of a life ending prescription with a co-pay of $1.20.
Had she taken it, would not this also be a death of despair?
Juxtapose the People magazine cover story about Spade and Bourdain’s deaths which were described as “tragic and preventable” with the same magazine’s cover story on Brittany Maynard.
Maynard was 29 when she was diagnosed with terminal brain cancer and given six months to live. She rejected palliative care and became an advocate for physician assisted suicide. She took her own life under Oregon’s law in 2014. People magazine called her decision to end her life, fearless, courageous and unsurprising. In one instance, suicide is tragic. In another, a matter of course.
But if there is a fundamental “right to die” in the face of decline, or loss of autonomy (loss of autonomy being the #1 reason given by patients seeking PAS) then should not all persons be able to exercise that right? Mentally ill? Physically ill? Children? Able to self-administer or not? Of course.
The message is confusing at best. At worst, it goes something like this, “Do you check certain boxes? Old? Ill? Poor? Dependent on others for care? Then suicide is a good option, for you. Because you no longer have value in a capitalist sense. You are dependent.”
Lest we consider this line of thinking alarmist, in Western European countries like Belgium, Switzerland, and the Netherlands where physician assisted suicide and euthanasia are legal, the practice has increased by double digits every year for over a decade and medical aid in dying has been extended to children, the mentally ill, people with autism, and others who simply feel they have “completed life.”
We learn from others, how to live, and how to die.
This broadening of access to PAS has not yet happened in the US, where it is legal in only a handful of states and the movement is just now gaining momentum. But a study published in The Southern Medical Journal has shown a correlation between legalizing physician assisted suicide in Oregon, and in increase in total suicides, as well as PAS in the state. Laws create norms. Many people who would not otherwise participate in killing do so when it is sanctioned by the government.
Indeed, it is difficult to even discuss suicide responsibly, because suicide itself can be contagious. We know that reporting on suicide, like reporting on school shootings (murder-suicides), which also occur in the US more than anywhere else in the world, can have a teaching effect. Particularly if the victims are celebrated and the means described.
Suicide contagion is real. People who know a victim are twice as likely to develop suicidal thoughts. 29 teenagers in my hometown, took their own lives between 2013 and 2015. They all had in common knowing another young person who had done the same.
In this way, physician assisted suicide is not simply the private choice of a patient who is ready to die. It impacts us all. As it creates two classes of people, makers and takers, and encourages takers to end their own lives before they “become a burden” on makers.
When it comes to people with reduced autonomy, Americans flip the script and say, “Suicide is a positive moral good.” “Or, what difference does it make how a person dies, if they’re dying anyway?” In fact, physician assisted suicide is described by advocates as the “dignified” choice. Advocates for so-called “death with dignity laws” say that ending one’s own life, on one’s own terms, and by one’s own hand, is a human right. That suicide for suffering persons is caring, gentle, compassionate. Even though it is the state sanctioned ending of a human life.
Proponents of PAS, rely on euphemism. Colorado’s law, prohibited PAS, from being listed as the cause of death. And prohibited the keeping of detailed statistics as to who is using the law and why. And yet, the word suicide is the only word we have in the English language for actively taking one’s own life. In doctor assisted suicide, the patient self-administers. In euthanasia, the physician does.
We need to question the myth of the sovereign individual who makes her choices in a vacuum. We are all products of a society that shapes who we are, how we think, and what choices we have. And what is given as an option by a person in power, can often feel like an obligation, especially when there are not good alternatives.
My friend Cassie is a hospice nurse in DC where PAS is legal. She has never had a patient ask for medical aid in dying but has frequently been asked by a patient’s family to “speed things along.” Death, like birth, can be long an unpredictable. Even without nutrition or fluids, it can sometimes take weeks for a person to die. Family members often feel helpless and want to “do something.”
But we cannot kill our way out of our traumas, without, at the very least, creating new ones, because killing is itself traumatic. According to the CDC veterinarians have 4 times the suicide rate of the general population. Despite being affluent and highly educated, 1 in 6 veterinarians has contemplated suicide. It turns out that euthanizing pets, day after day, takes a toll on providers, even though the pets feel no pain and the process is almost instantaneous. The work of killing, even killing animals, is hard.
Indeed, any kind of violence takes a toll on those whom we ask to carry it out. A Finnish study found that post-abortive women were 6 times more likely to commit suicide, even when you controlled for previous mental health issues. According to the National Coalition to Abolish the Death Penalty, 31% of executioners suffer from PTSD. And 22 US veterans take their own lives every day. More vets have died by suicide than in the Iraq war.
So, what is the solution? What can we bring to the table as whole-life Democrats, people committed to high-quality universal health care, and, at the same time to the idea that active killing is never healthcare. I have four modest proposals: education, legislation, storytelling, and community.
I think we need to do for death and dying what we have done for labor and delivery. Namely, improve outcomes, by empowering patients and their families with classes and education around end of life care.
In birth classes I learned about the labor process, what to expect, as well as techniques to cope with the suffering. I also learned about the medical model of birth, and how to avoid unnecessary medical interventions which might prolong the process. This preparation gave me a sense of agency and dignity, during a potentially traumatic experience.
Only 50 years ago most American women were unconscious during childbirth. They had no memory of it, and a spouse or support person was never allowed in the room. Just as no woman today would accept the “twilight sleep” birth experience of 50 years ago, neither should we accept the experience of death and dying in 20th century America, where octogenarians were routinely given pacemakers, when, had they been better educated, many would have decided against such drastic life-extending measures, which make it almost impossible to die naturally or at home. A dead person with a pacemaker still has to have their heart turned off. This blurs the line in peoples' minds between letting die and active euthanasia.
There is no moral duty to stay alive via technology indefinitely. Allowing oneself to age and die with limited or comfort care, is not the same thing as ending one’s life.
The author and activist Barbara Ehrenreich, now in her mid-70s, writes that unless she has an urgent need she has mostly stopped going to the doctor, “As the time that remains to me shrinks, each month and day becomes too precious to spend in windowless waiting rooms and under the cold scrutiny of machines.”
Ehrenreich is a critic of the endless tests, medications, and side effects, for what is essentially old age. Too many patients feel trapped in a system which profits off of endless treatment without providing education or accompaniment. These same patients may seek doctor assisted suicide for relief from an over-medicalized life and death. Indeed, a “happy” death, may require us being willing to die sooner of our diagnoses, but with a better quality of life. Ehrenreich writes of physicians having “NO CODE” or “DNR” meaning “do not resuscitate” tattooed on their bodies. Thus “rejecting the drastic end of life measures they routinely inflict on their patients.”
As with women in labor, dying patients are unique, and will want different things. Some will want every intervention, others less, others none, but most would rather die at home than in a hospital receiving painful, costly and ultimately ineffective “care.”
Just as people prepare for nine months for labor and delivery, so too do we need to prepare for illness and old age. We need to be better educated about the differences between life-prolonging care, limited medical care, and comfort care, so that we can make our wishes known in living wills.
We need laws that affirm the dignity and value of every human being, and that improve the way people die in America. We need laws that require providers to be trained in palliative care. Laws that require nursing homes and hospices to be adequately staffed. Laws that shut down nursing homes that do not meet basic standards. Laws that extend Medicaid and full coverage Medicare for all. Laws that require patients to be informed about their rights and options, including the right to refuse treatment. Laws that guarantee access to spiritual and psychological support.
We must improve hospice and palliative care and make a progressive case against PAS, which normalizes killing and de-prioritizes hospice. Indeed, there will be less of a need for high quality comfort care once patients have a “choice” to end their lives, a choice which happens to be inexpensive and convenient for everyone else.
So, we need to educate patients about their options, and make that laws that ensure high quality nonviolent care.
We need to tell stories about the art of dying well. Just as women share their birth stories, we need to share stories about death and dying. Storytelling creates community and is a form of preparation. Pushing death from our minds, hiding it away, even killing dying persons, is not going to make it any easier, and may in fact be making it worse, because we fear most what we have never seen done well. Indeed, thinking about one’s own death is proven to make people happier, because it helps them live with greater intention.
We need to rediscover extended family and other forms of intentional community which provide a hedge against despair. Young and middle aged people should consider moving closer to their parents (or having their parents move closer to them), so that they can be there for them at the end of life. This would also benefit younger people, as it would mean that they, in turn, would have a strong support system in times of need. What Spade and Bourdains’ deaths demonstrate, is that we are all dependent, all in need. No amount of health or wealth or fame is protective. We all deserve nonviolent healthcare, community, assistance and loving kindness.
Editorial Note: This talk was given at the Democrats for Life of America conference in 2018.