In the past year, lawmakers in two dozen states have put controversial end-of-life bills up for debate. Across the country, there is growing support to allow terminally ill patients to end their lives with a prescription pill, but only five states now allow medically assisted suicide. In California, a bill that could legalize medically assisted suicide is making its way through the state Legislature. Stephanie Packer, who is battling a terminal lung disease, says she thinks passing it would be a huge mistake.
In 2012, after suffering a series of debilitating lung infections, a doctor diagnosed me with scleroderma, an autoimmune disease that causes a hardening of the skin and, in some cases, other organs. Given the progression of my disease, my doctor told me that I had three years to live.
The (California) state Senate last week approved the so-called End of Life Act, which would allow the terminally ill to obtain lethal medications with a doctor’s prescription.
The death-on-demand law is co-authored by Sens. Lois Wolk and Bill Monning, with the tacit blessing of the California Medical Association, which previously opposed physician-assisted suicide, but now is officially “neutral” on the issue.
Wolk insists that the End of Life Act “is a compassionate addition to the existing continuum of care that may be used by modern medicine at the end of life.” Monning maintains that the legislation will allow those with terminal diseases “the autonomy to approach death on their own terms.”
As a life-long progressive who is rapidly approaching Medicare age, I am dismayed by the apparent resignation of the political left to the sorry state of dying in America. Just when moral outrage and radical social change are called for, my fellow progressives have embraced physician-assisted suicide as their political response to needless suffering of seriously ill people. This isn’t liberalism; it’s nihilism.
This liberal embrace of hastened death is spreading rapidly. In California, a bill to legalize doctor-assisted suicide passed the state senate last Thursday and is headed for the state assembly. In common with similar legislation in over 20 states, it was authored and co-sponsored by Democratic lawmakers touting civil liberties as their motivation.
In the 1970s this scenario was the stuff of dystopic sci-fi. Remember Soylent Green? A society decides it doesn’t have the resources or will to take good care of aging and dying people, but offers them a compassionately quick, painless and aesthetically pleasing death. Edward G. Robinson’s death scene in this 1973 movie (filmed while the actor was dying of cancer) is essential viewing for anyone who supports physician-assisted suicide.
In the 1970s and 1980s progressives championed hospice as a counter-cultural response to woefully bad care of terminally ill people. To good effect: Hospice and the specialties of palliative medicine and geriatrics demonstrated conclusively that much better care of frail elders and dying people is feasible and affordable. Meticulous communication and planning, skillful treatment of pain and other symptoms, support for patients and families in caring for themselves and 24-7 availability of professional help are all far less expensive than the current norm—in which no one attends to such details, while doctors forestall death at all costs. As a consequence, one in five people languish in intensive care units during their final days.
Dying is rarely easy, but it doesn’t have to be this hard. Having worked as a physician in hospice and palliative care teams since 1978, I know that no one needs to die in physical agony. With comprehensive whole person care, most people live in relative comfort and, despite the sadness of leaving those they love, even a sense of wellbeing during their final months, weeks and days of life.
For years it seemed like we were on a path to a future in which every person could be assured of comfort and having their dignity honored through the very end of life. Unfortunately, countervailing forces, chief among them the profit motive, supervened. Instead of transforming mainstream health care to become genuinely person-centered, hospice, palliative medicine and geriatrics are largely being absorbed within corporatized medicine. For instance, fully two-thirds of America’s hospices now belong to for-profit companies, many traded on Wall Street.
It’s great that more people receive hospice care than ever before, but quality has suffered. Across the hospice industry, the average number of dying patients assigned to each nurse has risen to untenable levels. Meanwhile, the industry’s capacity to provide continuous hospice care in people’s homes has all but disappeared, resulting in needless brink-of-death hospitalizations, avoidable pain and suffering and unnecessary costs. This is no surprise to liberals: the fiscal wellbeing of corporations too often takes precedence over the wellbeing of the people they serve.
Despite having the resources and technical know-how to reliably care well for people through the end of life, a persistent public health crisis surrounds the way we die. The public’s fear, anger and distrust are, tragically, well founded. But authorizing doctors to intentionally end peoples’ lives is nothing more than capitulation to this pervasive social irresponsibility.
An authentic, socially sound solution to this crisis is readily achievable if we can muster the will to demand it. A tectonic shift in the way healthcare is paid for—from financially rewarding quantity of services to measured quality of care delivered—has the potential to improve care for seriously ill people in transformative ways. This change began with RomneyCare, went national with ObamaCare, and will be accelerated by the “doc fix” legislation that Congress just passed and the president quickly signed.
Under these laws, accountable care and value-based payments will increasingly tie physicians’ Medicare fees to the quality of clinical outcomes and people’s satisfaction with the health care they receive. For end-of-life care, recognized quality measures include where people died and relatives’ perceptions of whether or not their loved ones’ values and preferences were elicited and honored.
This is no time to be fatalistic. Instead, it’s time to push major redesign of physician education and post-graduate training. State legislators could write bills to require medical and nursing schools and residency programs to adequately train clinicians in personalized symptom management, communication and shared decision-making, and collaborative team-based care. Legislators could mandate performance tests of basic skills in these areas before their state awards licenses to practice medicine.
Many corporate nursing homes today are little more than human warehouses. The wages and staffing levels of aides are so low that physically dependent people are destined to feel undignified. State legislatures could compel nursing home companies to employ enough nurses and aides to answer the bell when a physically dependent person—someone’s grandparent, mother or father—needs help in getting to a bathroom.
State-sponsored websites could provide easily accessible and reliable quality ratings of hospitals, nursing homes, assisted living facilities, and home health and hospice programs, helping to align market forces with public health priorities. Medicare’s star ratings of nursing homes, while far from perfect, are having a noticeably positive impact on quality of long-term care.
I’ve been making this case to state legislators who sponsor or support legalizing assisted suicide, almost all of whom are Democrats. I get a lot of “yes-but” responses: Yes but, you’ll never get doctors to practice the way you describe. The less polite refer to entrenched interests in the status quo and financial pipelines of the medical-industrial complex. Without disputing my premise, one senior blue state senator recently told me I was naïve to think anything substantial would change.
He sounded depressed, but I couldn’t let him off the hook. I pointed out that if the physician-assisted suicide bill he supports becomes law, his mother’s internist will still not have been adequately trained or have the skills needed to treat her pain or breathlessness. He will be no better at listening to her concerns or counseling her through the difficult, but normal, process of leaving this life. He will, however, be able to write her a lethal prescription.
What about this is good government?
It is said that the real worth of any society can be found in the way it cares for its most vulnerable members. In Oregon, Washington, Vermont, New Mexico and Montana where doctors can legally write lethal prescriptions, the systemic deficiencies that cause preventable distress among dying people persist. A healthy society doesn’t force its members to choose between suffering and suicide. I grew up believing that every person’s life has value and that America does not settle for less than the best. Suicide is not the answer. We are a far more generous people than that. Aged, ill and dying Americans need progressives to reclaim our commitment to bold, constructive political and social action.
On one point proponents and opponents of physician-assisted suicide can agree: A public health crisis surrounds the way we die. Our modern technological prowess in fighting disease has inadvertently made dying hazardous.
It occurs despite the best intentions of professionals, relatives and friends. We matter to one another and don’t want to lose the people we love. Yet the unintended consequences are undeniable. Patterns of excessive, ultimately futile, disease treatments and inattention to patients’ personal needs and priorities are commonplace. Many Californians today receive state-of-the-art treatments for their cancers or heart, lung or liver diseases, but go on to receive astonishingly bad care during the waning months, weeks and days of their lives.
Let’s be clear: This is one crisis we can solve. Taking much better care of dying people is possible and actually saves money. The highest quality centers tend to have the lowest costs because doctors there help people weigh complex treatment options, thereby avoiding unneeded and unwanted treatments and hospitalizations. Clinical teams there focus on coordinating home and community services, preventing emergencies and supporting patients’ caregiving spouses, sons and daughters, enabling people to stay at home whenever possible. These meticulous attributes of care are too often ignored, causing needless suffering and wasting money. Regulations and payment reform could go a long way to making the right care routine.
Doctors do not deserve blame, but they are undeniably part of the current predicament. Medical schools and residency programs are culpable for continuing to under-train and graduate well-meaning physicians who are ill-prepared to effectively treat patients’ pains or counsel people who are facing the end of life.
Instead of correcting these deficiencies, SB 128 would simply give doctors authority to write lethal prescriptions. And this is good government?
Many people seem surprised that a palliative care physician would oppose physician-assisted suicide. “You must be a conservative Republican” or “You must be Catholic,” they say. I am neither. I’m a liberal Jew (although my observances lead me to delis more often than synagogues). This is not about religious morality. It’s basic civics. We don’t allow bankers to steal from depositors or prosecutors to lie to judges and juries. We don’t allow doctors to kill patients.
Professional boundaries are the I-beams of civil society; undermine them and scary things happen. In an era in which providers of health care – doctors and hospitals – share financial risk with payers of health care, vigilance is warranted. Lethal prescriptions will always be less expensive than comprehensive whole person care and family support.
Proponents of SB 128 contend that Oregon-style safeguards would prevent abuses and keep insurers from offering suicide as an alternative to costly treatments. Then how does one explain the Oregon Health Plan’s initial refusal in 2008 to pay for expensive treatments for Barbara Wagner’s lung cancer or Randy Stroup’s prostate cancer, while informing each of their right to prescription drugs to end their lives. “The state can’t cover everything for everyone,” an Oregon administrator explained. An honest response, but the optics were bad so the agency later reversed the decisions.
Under provisions of SB 128, anyone who is terminally ill and desires a hastened death would be eligible. But in order to receive hospice services, the person would also still have to give up medical treatments intended to help them live better or longer. When did a right to die take the place of human caring?
To glimpse the future, we need only look to Holland, Belgium and Switzerland where assisted suicide and euthanasia have long been practiced. There, despite universal health care, it is no longer uncommon for doctors to euthanize people who request to die due to non-terminal pain, depression, early dementia or loss of desire to live. In the United States, the Final Exit Network, one of the national groups promoting assisted suicide legislation, advocates for a right-to-die for people with non-terminal and nonphysical suffering. Asked about assisting people with dementia to end their lives, the president of Compassion and Choices said, “It is an issue for another day, but is no less compelling,”
Legislators can take boldly brighter actions. Bills could impose real curriculum reform on California’s medical and nursing programs, ensuring that they teach and test for basic palliative care skills before awarding degrees and licenses. The state could report staffing levels and quality ratings for hospitals, nursing homes, home care and hospice programs so that people could make informed consumer choices.
Instead of offering a lethal solution to this social crisis, we could make it safe for seriously ill people to live fully and die well.
Byock, a palliative-care physician, directs the Institute for Human Caring of Providence Health and Services in Torrance. He is author of “Dying Well” and “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.”
Assisted Suicide Debate Touches on Race, Class, and Privilege
Since Not Dead Yet started, we’ve seen that the proponents of assisted suicide consist of what we call the “4 W’s” – the white, well-off, worried worried well. That hasn’t changed.
Last week, columnist Debra J. Saunders discussed the role that class, income and race play out in the debate in that state over legalization of assisted suicide. Here are a couple of excerpts from her excellent column, “Assisted suicide: help the rich to not get too much care“: