Centuries from now, one of the things our era will be known for is the plague of dying badly. A growing number of physicians believe that one solution is helping their dying patients choose to end their lives. I disagree.
I’m proud of being a physician and a lifelong political progressive. I ardently believe in human rights. But there are some things doctors must not do. Intentionally ending patients’ lives is chief among them.
Read the counterpoint: I’m a doctor with end-stage cancer. I support medical aid in dying
Prolonged suffering before death emerged as a public health crisis in the mid-20th century. This first-world scourge, so persistent that few dare to imagine it can be eradicated, is a direct result of modern medicine’s original sin: believing that we can vanquish death. Given doctors’ success at saving lives threatened by severe injuries and infections, they presumed they could overmaster death. Yet despite the prowess of 21st-century medicine, my colleagues and I have yet to make a single person immortal. Instead, we have condemned countless incurably ill patients to needless anguish.
In bringing science to fight disease, the medical profession also brought hubris. Contrition is called for. But instead of owning up to our shortcomings, medical associations in several states have accepted what’s called medical aid in dying, becoming complicit in burying the results of our profession’s collective failings. That makes little sense from clinical, ethical, or social perspectives.
Professions exist to serve the public, not the other way around. Americans are rightly outraged by the mistreatment their dying loved ones commonly receive. People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.
Dying badly is not inevitable. With current evidence-based, multimodal treatments, even the most severe pain associated with dying can be alleviated. Nature has given human beings gentle ways to leave this life when death draws near. In liver and kidney failure, the buildup of metabolic byproducts gradually sedates the dying person. With pneumonia, as with heart or respiratory failure, consciousness fades as the oxygen level and blood pressure fall. Some illnesses, such as cancer or dementia, eventually sap the appetite, causing individuals to dehydrate and peacefully slip away.
Under usual circumstances, doctors rightly act to swiftly treat dehydration, low blood pressure, and the chemical derangements of serious illness. Yet there comes a point in every life when more medical treatments do not equate to better care. In her book “Refuge,” Terry Tempest Williams relates her dying mother’s observation: “Terry, dying doesn’t cause suffering. Resistance to dying causes suffering.”
While physicians are the chief instigators, nearly everyone is complicit in overtreatment. Like the family described in this First Opinion, many of us insist on doing everything possible to preserve life. Our motives are noble. We love life and the people in our lives. We don’t want to die and we don’t want our parents, children, or siblings to die. Physicians don’t want their patients to die, either. Still, the unintended outcomes of our actions cannot be denied. In addition to causing unnecessary suffering at the end of life, witnessing the misery our treatments sometimes cause undoubtedly contributes to soaring rates within our profession of moral distress, burnout, depression, addiction, and suicide.
This is an unprecedented predicament. Throughout history, most public health crises were corrected through enhanced scientific knowledge and sophistication. Sanitation stemmed typhoid, cholera, and dysentery. Vaccinations prevented smallpox and polio. The crisis of dying badly in America may be an unforeseen consequence of sophistication, since it is most evident — and most extreme — in university-based referral centers.
Two recent reports from UCLA, one of our nation’s premier medical centers, illustrate the problem. In one study, researchers found that only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died. To put this number in context, the American Society of Clinical Oncology considers referral to hospice a best practice for patients with advanced cancer. At UCLA, after embedding a palliative care nurse practitioner in selected clinics, 53 percent of patients were referred to hospice. While significant, this improvement falls short of Medicare’s national average of 60 percent of cancer patients who receive hospice care. Of note, that benefit only occurred at only two of UCLA’s 42 cancer clinics.
In a second study, investigators found that UCLA patients with cancer routinely received excessive radiation treatments to tumors that had spread to their bones. Of 54 patients who met criteria for single-dose treatment under clinical guidelines developed using the RAND/UCLA Appropriateness Methodology, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which represents outdated, burdensome treatment regimens. Such overzealous treatment results in added revenue for doctors and the cancer center, but takes a disturbing toll on frail patients’ scant energy and fleeting time. There is little reason to believe the situation is much better at America’s other top medical centers.
From its inception, the profession of medicine has been charged with guiding society in matters related to health and wellbeing. Organized medicine should now be leading the charge for substantial improvements in caring for incurably ill patients. Instead, in several states the profession has begun to embrace physician-hastened death.
In December, as state “right-to-die” legislation was being debated, the Massachusetts Medical Society dropped its long-held opposition to physician-assisted suicide, adopting an oxymoronic position of neutral engagement. The California Medical Association approved a similar stance in June 2015, a decision that paved the way for passage of the state’s End-of-Life Option Act. State medical associations in Colorado, Vermont, and Maine have followed suit.
I am not the only doctor who recoils at the idea of writing prescriptions for patients to use in ending their lives. These days, however, many of my fellow physicians are too disengaged to feel strongly one way or the other, or simply can’t imagine how things could be different.
In today’s high-tech medicine, doctors treat disease. Patients’ well-being gets short shrift. When disease can no longer be kept at bay, modern medicine tends to give up altogether. If that sounds cynical, consider that in the wake of its own researchers uncovering serious systemic deficiencies in end-of-life care, UCLA actively moved to the forefront of institutions offering lethal prescriptions to eligible patients.
To its credit, the medical center’s protocol makes referral to palliative care and hospice a requirement for medical aid in dying. The cruel irony is that requesting a lethal prescription is now the surest way for UCLA patients to access the benefits of these specialized services at the most difficult times in their lives.
People who argue for the right to die invariably relate one or more stories of people they loved who died badly — tethered to machines in an intensive care unit or left to languish in a nursing home with their pain and emotional suffering ignored. It’s easy to understand how people in such situations would want to be freed from such anguish. Yet so much of that kind of suffering could have been avoided with good care.
Casting physician-hastened death as a freedom is disingenuous at best. If doctors don’t communicate with you about your condition and listen to your priorities, if they are unskilled in alleviating your pain, if medical bills are bankrupting your family, asking to die may be entirely rational. As the lyric goes, “Freedom’s just another word for nothing left to lose.”
I’m not expecting my profession to repent for its sins. I am, however, ever hopeful that doctors will once again rise to socially responsible leadership. We need to refocus on the fundamentals of human caring and recommit to caring well for people from birth all the way through to death. Here are some of the things that organized medicine could do to correct deficiencies that cause so many people to suffer needlessly at the ends of their lives:
- Draft public policies to fix longstanding flaws in clinical training and monitor members’ practices for quality indicators of excellent end-of-life care.
- Compel hospitals to institute robust palliative care programs.
- Champion regulatory reform to increase minimum staffing in nursing homes and rescind the licenses of facilities that repeatedly fail to meet their residents’ basic needs.
- Draft legislation to require Medicare and insurance companies to allow patients to receive hospice care while they are being treated for late-stage cancer or organ failure.
Physicians’ opinions will remain divided over the issue of pre-empting death. Those differences need not stop us from making it possible to care for our patients skillfully, with kindness and compassion, through the end of life.
Ira Byock, M.D., is a palliative care physician and chief medical officer of the Institute for Human Caring of Providence St. Joseph Health based in Torrance, Calif. His books include “Dying Well” and “The Best Care Possible.”
The Untamed Tongue, published in 1990, psychiatrist Thomas Szasz asserts: “Suicide is a fundamental human right. …society does not have the moral right to interfere, by force, with a person’s decision to commit this act” (Open Court Publishing Co., p. 250-251).
I was a hospice RN for 20 years. Most of the time I felt good about our ability to manage symptoms. My Father in Law was in intermittent terrible pain, as well as having seizures. One of my co workers was also a hospice RN. She took care of her terminally ill sister in a hospice facility. Even with an anesthesiologist they were never able to really control her sisters pain. We in hospice were told there was the option of terminal sedation, but when it looked like we should consider it, it never happened. I feel we should all have choices.
Once again I read a paternalistic piece from someone with a vested monetary interest in the position he espouses. Medical degrees do no confer sainthood but some who achieve them think it has conferred upon them the right to make all decisions for and about those who become their patients.
Currently I cannot obtain the means to end my life at a time and place to suit me without permission from the gatekeeper professions of doctors, clerics and politicians. Fortunately the power and decisions of gatekeepers changes over time and one day end of life decisions will be back in the hands of individuals.
I live in Scotland and in the last year watched both my mother and husband die. Yes physically sat there for days. I visited my mother in her nursing home almost daily for five years and saw the same process time and time again. Other than reading textbooks of the death process I’m unclear as to how doctors today have intimate knowledge about the last hours of life, with the exception of emergency rooms, my experience is those are dealt with and witnessed by nursing staff. Once imminent death is predicted (and that’s a fluid measure of time) doctors become invisible.
I am neither ill nor wishing to die but I truly believe that if/when I am the choice should be mine. I well remember the fight for the right of a woman to choose abortion, the same arguments prevailed. Whilst I didn’t and still don’t believe that would be a decision I’d take the same principles will apply with assisted dying, people will be free to choose.
What get’s me about this article is that this DR sees all the pain and suffering, and sees that medicine has perhaps gone too far, but has wilful blindness to see that ‘palliative’ care will NOT make everyone’s suffering go away. Apart from the fact the NHS (in the UK case anyway) can’t seem to cope with the people suffering who have no intention of dying. We have lack of beds, people denied hip and cataract ops – and scandalous undercover exposure of care of the elderly in ‘homes’ and hospitals. Where EXACTLY are all these caring ‘palliative’ folk going to come from? Where are all the beds going to come from?
Then there are people like my Andrew who was in terrific pain, was certainly never going to go into a hospice or ‘care’ home and wouldn’t have been eligible anyway. This is what drives me nuts! This paternalism and arrogance that those of us out here, we the plebs, don’t know what we want and need. There is a comment on this link by Janet, that tells it how it was for her husband…..and with the best care in the world his suffering was NOT relieved, like so many other comments I read elsewhere. The memory left behind of their loved one’s suffering haunts them. I, on the other hand, know my husband, Andrew Tyler, had a ‘good’ death. He died at Dignitas with me holding his hand. He died still the man he was – Andrew – rather than what he knew he was rapidly going to turn into. His death would have been a ‘great’ death if we’d be allowed to have it here in the UK. Andrew could have died in his own home, with those he loved round him rather than secretly fleeing to a foreign land. I will be eternally grateful to the Dr who wrote out the prescription for Andrew, so that the Dignitas team could do the wonderful work they do . As Andrew said to this brave Dr – ‘you have been a true friend.’ And I say ‘brave’ for many other Drs put Drs, like the one who helping us, under enormous pressure NOT to do what so many of us normal mortal souls want .
Yes, all doctors who take care of dying patient should clarify exactly
which end-of-life methods of managing dying they approve.
Polling shows that doctors are divided about fifty/fifty
on the question of ‘euthanasia’ or ‘physician-assisted suicide’.
Most hospice programs lean more heavily toward the passive end:
We will do nothing to speed along the process of dying.
Here are the five major methods of managing dying.
Let each provider declare which are allowed:
https://www.facebook.com/groups/1534291900145198/permalink/1996150080626042/
I was diagnosed with Stage IV breast cancer the month before Colorado’s right to die law was passed. As a CO resident, I was happy and relieved to know that I would have that as an option, if circumstances came to that. Please Dr Byock, don’t take that option away.
I agree with Dr. Byock on most of his points. I, too, do not agree with MAID in any circumstance (or whatever acronym one chooses to refer to assisted suicide and euthanasia). However, he seems to suggest that high-quality palliative care can assuage someone’s desire for a hastened death. Given that the majority of requests for a hastened death have nothing to do with symptoms, per se, but instead are related to loss of autonomy (or worries about a future loss of autonomy) and burdensomeness to loved ones, palliative care has fewer pharmacologic resources to bring to bear on the dilemma. I would also contend, in a morally pluralistic society, discussions about those concerns may not be productive.
I elaborate on this dilemma of how using death as a remedy is problematic here: https://wordandbody.wordpress.com/2017/09/21/the-death-prescription/
My heart breaks for those who are suffering, particularly as they near the end of their life. I do not think killing them, or helping them to kill themselves, is the answer, but it is a demonstration of how suffering dissolves meaning in times of crisis. Is palliative care equipped to help restore meaning in the lives of those who are suffering? I’m not sure.
I am the widow of my dear friend and husband who died an excruciating death in April 2017. David was given the diagnosis of inoperable and terminal metastatic pancreatic cancer on January 6, 2017 and was advised that he had 4 – 6 months to live. He was encouraged to consider hospice care and met with doctors and staff in the pain clinic.
I am responding to Dr. Byock on behalf of Dave who was too ill last winter to speak to legislators in MA about why he supported the passage of medical aid in dying. I am also writing on behalf of myself and our 5 children. Dave’s first wife died a painful death from ovarian cancer. He was no stranger to the horrible and unnecessary suffering that can accompany a terminal cancer diagnosis. He was an advocate for medical aid in dying then and he remained an advocate until his death.
Dr. Byock states that “with current evidence-based, multimodal treatments, even the most severe pain associated with dying can be alleviated.” That just was not true in my husband’s case. Dave had the best oncologists and pain doctors available. He was an inpatient at a top medical center in Boston and received state of the art pain management treatment. Still, he suffered greatly and begged me to help him die. He received palliative care treatment close to home and eventually hospice care while trying to undergo palliative chemotherapy (another attempt to reduce his pain). Care givers were compassionate and sensitive, tender and informed and skilled. Still, Dave suffered mightily. There were meds for pain and meds for the side effects of pain meds, meds to ease nausea and meds for anxiety and more meds…. Dave just wanted to die peacefully.
Dr. Byock makes several good points about the need for the medical profession ”to be leading the charge for substantial improvements in caring for incurably I’ll patients.” In our experience, that is happening in MA and Dave was the beneficiary of the best in palliative medicine and pain management. It was Dave’s belief, and it is my belief and that of our children, that ”improvements in caring for incurably ill patients” includes, or should include, medical aid in dying.
Dr. Byock states that “people who argue for right to die invariably relate one or more stories of people they loved who died badly – tethered to machines in an intensive care unit or left to languish in a nursing home with their pain and emotional suffering ignored.” That was just NOT the case with Dave. Dave was able to stay home for most of the three months before he died and died at home. He was surrounded by loving family and received endless visits from loving friends, sometimes just to sit quietly while he slept. Our children and friends played music and sang to him. Only at the very end did he agree to a hospital bed and only to avert the further indignity and pain of bedsores. Even then we were able to lower the mattress even with that on our own bed so that we could sleep next to each other. But despite all of these homey and emotional comforts, Dave was in pain, excruciating pain, unrelenting pain. He was agitated and delirious as the end neared. About a week before he died he voluntary chose to stop all liquids, food and medications unrelated to comfort care. Dave was ready to die in January. He wished he would have a heart attack and die. He wished he had the choice to obtain a prescription from his doctor that would allow him to slip away quietly amid the love of his family. He asked me to help him move to Vermont so that he could benefit from their medical options at death law. He was too ill for us to travel that distance.
We believe that more medical choices at death allow terminally ill patients to make the choice that gives them a peaceful death with the comfort of physician guidance. It is an option that would have given Dave significant peace of mind and relieved much of his unnecessary suffering and the agitation that accompanied his death.
Wow. I am so sorry to read your story of the illness and death of your precious Dave. I have a “Dave” too. You wrote eloquently about your experience. It certainly spoke volumes to me. I see this subject as extremely important and in need of awareness and changes in healthcare policies. God bless.