Our cultural tendency is to avoid serious conversations about end of life, and mortality has become politically polarized, but the longer we wait, the harder it will be to avoid disaster.
Living in unprecedented times is not all bad. Quite the contrary: The historic challenges we face come with historic opportunities. As a society, we can collectively transform the way we die. But if we want to reclaim a sense of optimism about our future — and our children’s futures — we must act wisely, courageously, and decisively.
As important as doing something is, before leaping into action, it is worth pausing to understand why we haven’t taken action sooner. I am not the first person to note that our nation’s social systems and services have not kept pace with advances in treatments and survival, leaving urgent catch-up work to be done. For years sociologists, public health professionals, gerontologists, and members of my own field of palliative care have been warning about the looming problems of aging, dying, and caregiving. In 1997 the Institute of Medicine concluded, “Too many people suffer needlessly at the end of life, both from errors of omission and commission.” One reason our nation hasn’t acted sooner is that there are always more immediate crises to deal with: terrorism, foreign wars, hurricanes, floods, the bursting of financial bubbles, and the near collapse of our economy. All rightly vie for attention of the voting public, politicians, and elected leaders. However, competing social priorities alone do not explain our country’s inaction on these pressing issues.
Let’s face it: A more basic reason is that the subject of how we die is depressing. “I don’t want to think about it!” aptly expresses the American mind-set. Our cultural tendency is to avoid serious conversations about the end of life. Pain, pus, puking, being at the mercy of doctors, the astronomical expenses, the utter disruption of life. Who wants to think about any of that?
The complex social and system challenges we face make it all the more tempting for politicians and social leaders to keep deflecting — or at least deferring — the topic. Public policy discussions related to incurable illness, dying, death, and grief are typically confined to either the costs of health care or the pros and cons of physician-assisted suicide. Neither are adequate proxies for the fundamental questions of how our society should respond to our most fragile elderly or ill members and the families who care for them. Politicians shy away from the issues because they don’t want to depress voters. Savvy candidates strive to ignite a sense of optimism and can-do enthusiasm among voters — even if doing so means postponing some pressing social responsibilities. The topic of how we die is just not energizing.
And, of course, as mentioned, there are always more urgent problems to attend to, which provide plausible cover for putting off these morbid discussions. So, like passengers on a river raft we drift along, toward a precipice we have been told lies ahead, effectively distracted and seemingly unaware that the longer we wait, the harder it will be to avoid disaster.
Last, and most maddening, mortality has recently become a politically polarized issue. It is almost comical, but the consequences aren’t funny. One would think that mortality would provide the ultimate common ground for bringing people together. Instead, suspicion pervades and divides public opinion on the way we die. In addition to being depressing, the subject has now become politically toxic.
On the one hand, ardent proponents of legalizing physician-assisted suicide accuse doctors of forcing people to suffer by refusing to prescribe lethal medications. Doctors and nurses who do not support right-to-die legislation are alleged to hide a religious agenda or have a profit motive in keeping patients alive.
On the other hand, vehement elements of the pro-life movement accuse doctors and nurses of promoting “a culture of death” whenever we allow people to die gently — without subjecting them to CPR (cardiopulmonary resuscitation), breathing machines, dialysis, or feeding tubes. Vocal pro-lifers loudly equate writing a DNR (do not resuscitate) order with killing patients, advance care planning conversations between doctors and patients with “death panels,” and palliative care with rationing or “killing granny.”
The only thing these two passionate and disparate poles of public opinion have in common is a deep-seated distrust of doctors and nurses, the very professionals society relies on at the end of life.
No wonder our politicians and elected officials avoid these topics as if they were radioactive. Year after year, pressing problems that deserve — and might be solved by — thoughtful consideration and constructive public policy remain unattended. Needless suffering continues. This seems the very definition of social irresponsibility. Fixable problems go unfixed and far too many Americans die badly. No wonder there is public distrust.
What a morass.
Unless and until we can bridge the cultural chasm of distrust, we will not substantially improve the way we die.
Most practitioners in my own field of hospice and palliative care largely choose to ignore the outrageous allegations that we promote death panels and the killing of vulnerable people. In being too polite, or too timid, to confront the controversy, I fear that we have allowed the distrust to fester. To a public that is worried about care, silence from the accused can be easily misconstrued. Uncorrected accusations reverberate within media echo chambers. Unchecked, political vitriol of this nature will derail socially responsible, constructive actions. It’s unnecessary.
In truth, reverence for life permeates the care that I and colleagues in our field provide. Love for life motivates everything that I do and teach. Reverence for life does not include hastening death, nor does it include forcing people to suffer as they die. As a clinician, it does require me to show up — with all the resources and skills my training and experience provide — and to lean forward, listening to the persons before me and learning how I can best be of service.
I don’t think of myself as religious. I was raised by Jewish parents, and although I am not particularly observant of holidays or rituals, my sense of the inherent value of life has roots deep within my ancestry and upbringing. Life is an absolute value for Jews. Many Jews wear the Hebrew symbol for life, chai, as pendants around their necks. We toast L’chaim! (To life!) as we raise glasses in celebration. If reverence for life constitutes a religious agenda, I suppose I have one.
However, the value of life is embedded in secular medical and nursing care as well. It is also, of course, evident in health care chaplaincy, regardless of the individual chaplain’s faith. Life’s intrinsic value motivates clinical trainees and professionals of every discipline. Although many of the patients we care for could be considered to be dying, my experience of hospice and palliative care is of an unrestrained team effort to preserve, honor, and celebrate life.
The branding of the term “pro-life” by conservative political activists has had an unhelpful, polarizing effect on the culture. People who are not “pro-life” are, therefore, what? Pro-death? I don’t think so.
In truth, my colleagues and I in hospice and palliative care represent the most genuinely pro-life segment of American society. An unwavering affirmation of life leads most of us to oppose legalizing assisted suicide and euthanasia. But it is not about politics. It is simply that love of life — not in the abstract but love for the people we care for as patients — is the reason we do what we do. People who work in this field understand that to truly affirm life, one needs to affirm all of life — and that includes the part that we call dying.
An authentic, consistent pro-life message could resolve cultural controversies surrounding how we die. Knowing that, in addition to alleviating symptoms and distress, we can honor and celebrate the people we love as they die opens up fresh approaches to difficult, unavoidable life-and-death decisions. The ethics of care must no longer be confined to considerations of when and under what circumstances life-prolonging treatments can be withheld or withdrawn. Ethics must elaborate when and under what circumstances we must act to enhance a person’s comfort, sense of dignity, and well-being through the end of life.
I am convinced that Americans across the social and political spectrum can come to broad agreement on what the best care possible looks like and what it means to die well. Most people already agree on the fundamentals of high-quality care. We can stand on common ground well above the scarred fields of old culture wars. We can provide excellent lifesaving treatments, while respecting people’s right to determine when enough is enough, always ensuring that their pain is treated expertly, that they and their families are treated tenderly.
Sadly, the way many Americans die remains a national disgrace. Yet, this is one national crisis we can solve. To succeed we must face hard truths and act courageously. We must be willing to collaborate even when — especially when — our social, religious, and political beliefs and personal preferences are very different. The stories that fill The Best Care Possible are evidence that medical excellence and tender human caring can coexist.
Upon closing this book, I hope you will have a sense of what “the best care possible” looks like in the 21st century. And if a time comes when you need it, I hope you will be prepared to get the very best care for you and those you love.
Excerpted from Ira Byock’s “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life”
Ira Byock is director of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and author of "The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life".