Is there a right to die?

Eric Mathison
Baylor Medical College of Medicine Blog
Originally posted May 31, 2019

How people think about death is undergoing a major transformation in the United States. In the past decade, there has been a significant rise in assisted dying legalization, and more states are likely to legalize it soon.

People are adapting to a healthcare system that is adept at keeping people alive, but struggles when aggressive treatment is no longer best for the patient. Many people have concluded, after witnessing a loved one suffer through a prolonged dying process, that they don’t want that kind of death for themselves.

Public support for assisted dying is high. Gallup has tracked Americans’ support for it since 1951. The most recent survey, from 2017, found that 73% of Americans support legalization. Eighty-one percent of Democrats and 67% of Republicans support it, making this a popular policy regardless of political affiliation.

The effect has been a recent surge of states passing assisted dying legislation. New Jersey passed legislation in April, meaning seven states (plus the District of Columbia) now allow it. In addition to New Jersey, California, Colorado, Hawaii, and D.C. all passed legislation in the past three years, and seventeen states are considering legislation this year. Currently, around 20% of Americans live in states where assisted dying is legal.

The info is here.

Health care, disease care, or killing care?

Hugo Caicedo
Harvard Blogs
Originally published October 1, 2018

Traditional medical practice is rooted in advanced knowledge of diseases, their most appropriate treatment, and adequate proficiency in its applied practice. Notably, today, medical treatment does not typically occur until disease symptoms have manifested. While we now have ways to develop therapies that can halt the progression of some symptomatic diseases, symptomatic solutions are not meant to serve as a cure of disease but palliative treatment of late-stage chronic diseases.

The reactive approach in most medical interventions is magnified in that medicine is prone to errors. In November of 1999, the U.S. National Academy of Science, an organization representing the most highly regarded scientists and physician researchers in the U.S., published the report To Err is Human.

The manuscript noted that medical error was a leading cause of patient deaths killing up to 98,000 people in the U.S. every year. One hypothesis that came up was that patient data was being poorly collected, aggregated, and shared among different hospitals and even within the same health system. Health policies such the Health Information Technology for Economic and Clinical Health Act (HITECH) in 2009 and the Affordable Care Act (ACA) in 2010, primarily focused on optimizing clinical and operational effectiveness through the use of health information technology and expansion of government insurance programs, respectively. However, they did not effectively address the issue of medical errors such as poor judgment, mistaken diagnoses, inadequately coordinated care, and incompetent skill that can directly result in patient harm and death.

The blog post is here.

Ethical Dimensions of Caring Well for Dying Patients

Ilana Stol
AMA Journal of Ethics
2018;20(8):E678-682.

Dying is a uniquely individual yet deeply shared and universal experience; it profoundly impacts perceptions of culture, personhood, and identity. For many Americans, it is also an experience widely discrepant from the one they want and envision for themselves and their loved ones.  Over the past decade, there has been growing awareness of the incongruence between the way Americans say they want to die and how they actually do.  But while most would agree that this reality is not the ideal that clinicians or patients strive for, what is less agreed upon is what the roles of clinicians and patients should be in defining what actually constitutes dying and good care of dying people. What do patients and clinicians need to know about dying and care at the end of life? What barriers exist to accessing and employing this knowledge in the face of difficult decisions?

To best answer these questions, it is useful to examine the social structures and supports already in place for end-of-life care and to understand how they are being utilized. To begin with, hospital palliative care programs are expanding rapidly in order to meet the physical and emotional needs of patients with serious or terminal illness. Robust evidence now exists demonstrating that early palliative care improves the dying experience for both patients and families while generally reducing health care costs and potentially prolonging survival. Despite these facts, there is significant variation in physician practice in the care of patients at the end of life and a general consensus that palliative and hospice care are underutilized by physicians.

The information is here.

Which Doctors Should ‘Own’ End-of-Life Planning?

By Randi Belisomo
Medscsape
February 12, 2015

The duty to guide patients through the end-of-life decision-making process rests squarely on primary care providers, writes one internist in The New England Journal of Medicine in a February 11 online article, maintaining that her colleagues should better support seriously ill patients earlier and throughout the course of disease.

Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health and Science University, is one of three physicians responding to the NEJM's most recent "Clinical Decisions" case feature, detailing a woman undergoing treatment for metastatic breast cancer. However, her advance directive has not been reviewed in close to a decade.

The entire article is here.

When Medicine Is Futile

By Barron Lerner

The New York Times

Originally published September 18, 2014

Here is an excerpt:

The medical futility movement, which argued that doctors should be able to withhold interventions that they believed would merely prolong the dying process, did not experience great success. Physicians declaring things to be “futile” sounded too much like the old system of medical paternalism, in which doctors had made life-and-death decisions for patients by themselves. It was this mind-set that bioethics, appropriately, had sought to correct. Patients (or their families) were supposed to be in charge.

The problem was that the new system did not account for one thing: Patients often demanded interventions that had little or no chance of succeeding. And physicians, with ethicists and lawyers looking over their shoulders, and, at times, with substantial money to be made, provided them.

The entire article is here.

Panel Urges Overhauling Health Care at End of Life

By Pam Belluck
The New York Times
Originally posted on September 17, 2014

The country’s system for handling end-of-life care is largely broken and should be overhauled at almost every level, a national panel concluded in a report released on Wednesday.

The 21-member nonpartisan committee, appointed by the Institute of Medicine, the independent research arm of the National Academy of Sciences, called for sweeping change.

“The bottom line is the health care system is poorly designed to meet the needs of patients near the end of life,” said David M. Walker, a Republican and a former United States comptroller general, who was a chairman of the panel. “The current system is geared towards doing more, more, more, and that system by definition is not necessarily consistent with what patients want, and is also more costly.”

The entire article is here.

Teaching doctors when to stop treatment

By Diane E. Meier
The Washington Post
Originally published May 19, 2014

Here is an excerpt:

For years I had tried to understand why so many of my colleagues persisted in ordering tests, procedures and treatments that seemed to provide no benefit to patients and even risked harming them. I didn’t buy the popular and cynical explanation: Physicians do this for the money. It fails to acknowledge the care and commitment that these same physicians demonstrate toward their patients. Besides, my patient’s oncologist would make no money from the neurosurgery required for the intrathecal chemotherapy procedure.

It seemed that giving more treatment was the only way the oncologist knew to express his care and commitment. To him, stopping treatment was akin to abandoning his patient. And yet the only sense in which she felt abandoned was in her oncologist’s unwillingness to talk with her about what would happen when treatment stopped working.

The entire story is here.

Prolonging Life: Legal, Ethical, and Social Dilemmas

The Nour Foundation
Exploring Meaning and Commonality in Human Experience




An absolutely fascinating discussion on end of life issues.

A Right to Die, A Will to Live

By Margaret Cheatham Williams
The New York Times
Originally posted July 17, 2013

As a bioethicist, Peggy Battin fought for the right of people to end their own lives. After her husband’s cycling accident, her field of study turned unbearably personal.

Do We Need 'Thanaticians' for the Terminally Ill?

By Ronald W. Pies
Medscape - Ethics in Psychiatry
Originally published September 26, 2012

My 89-year-old mother had been losing ground for some years, experiencing what geriatricians sometimes call "the dwindles." Toward the end of her life, she was beset by a deteriorating heart; an inability to walk; and occasional, severe gastrointestinal pain. My family got her the best medical treatment available -- eventually including home hospice care -- and she generally maintained a positive attitude throughout her long downhill slide.

But one day, as I sat beside her bed, she seemed unusually subdued. "Honey," she said, "How do I get out of this mess?" I had a pretty good idea of what she was really asking me, but I deflected her question with another question: "Ma, what 'mess' do you mean?" I asked. "It's all right," she replied, smiling sadly, "I'll manage."

My mother was doing what she had always done: sparing her children from pain. In this case, it was the pain of dealing with the waning days of her life and the frustration of knowing there was no easy escape from the burdens of dying slowly. "Ma, I'll always make sure you are getting enough treatment for your pain," I added, taking her hand -- knowing that the prospect of unremitting pain is often an underlying fear of terminally ill persons.

Yet, unspoken in my mother's question was the issue of so-called physician-assisted dying, sometimes called "physician-assisted suicide" -- an enormously heated controversy both outside and within the medical profession. In my home state, Massachusetts, the issue has come to the fore, owing to a November ballot initiative for a measure that would allow terminally ill patients to be prescribed lethal drugs. A closely related bill (H.3884) has also come before the Massachusetts Legislature's Joint Committee on the Judiciary.

The entire ethical dilemma is here.

There is more to end-of-life practices than euthanasia — Authors' reply

The Lancet
Volume 381, Issue 9862, Pages 202-203

Bregje Onwuteaka-Philipsen, Arianne Brinkman-Stoppelenburg, Hans van Delden, Anges van der Heide

We agree with Jan Schildmann and Eva Schildmann that the debate on end-of-life practices should not be limited to euthanasia. We also agree that increased attention to palliative care does not necessarily result in good quality end-of-life care. Our study gives an insight into end-of-life decision making and end-of-life acts, but not into the quality of end-of-life care. Additionally, what good quality end-of-life care consists of is not that straightforward. This is certainly true for palliative sedation. Although there is an increasing body of published studies on this subject, there are controversies on terminology and ethical acceptability of the practice. Guidelines are a way to try to overcome this and to improve quality of care. Yet there are many different guidelines—eg, at the institutional level and in different countries—and the premises of national guidelines can be the subject of debate. In our opinion, the role of empirical studies such as ours is to underpin the ongoing debate with information about what occurs in practice.

We declare that we have no conflicts of interest.

doi:10.1016/S0140-6736(13)60087-2

Suicide by Choice? Not So Fast

By Ben Mattlin
The New York Times - Opinion Pages
Originally published October 31, 2012

NEXT week, voters in Massachusetts will decide whether to adopt an assisted-suicide law. As a good pro-choice liberal, I ought to support the effort. But as a lifelong disabled person, I cannot.

There are solid arguments in favor. No one will be coerced into taking a poison pill, supporters insist. The “right to die” will apply only to those with six months to live or less. Doctors will take into account the possibility of depression. There is no slippery slope.

Fair enough, but I remain skeptical. There’s been scant evidence of abuse so far in Oregon, Washington and Montana, the three states where physician-assisted death is already legal, but abuse — whether spousal, child or elder — is notoriously underreported, and evidence is difficult to come by. What’s more, Massachusetts registered nearly 20,000 cases of elder abuse in 2010 alone.

The entire article is here.

The Evolving State of Physician-Assisted Suicide

Massachusetts voters soon will decide whether to become the third state to legalize the contentious end-of-life care option for the terminally ill.

By Jaime Joyce

The Atlantic Monthly

Originally published July 16, 2012

Should terminally ill patients have the right to kill themselves? Voters in Massachusetts will soon decide. Last Wednesday, the Secretary of the Commonwealth announced that on November 6, 2012, when Bay State voters go to the polls to pick the next President, they will also have their say on a ballot measure called the Death with Dignity Act. If passed, the law would make Massachusetts the third state to give adults diagnosed with six months or less to live the option to end their lives using a lethal dose of doctor-prescribed medication.

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A study released by the Health Research and Education Trust shows that Americans are living longer lives than ever before. As a result, more individuals and families will face difficult questions about end-of-life care. In 2011, the oldest Baby Boomers turned 65. By 2030, the number of Boomers between 66 and 84 years old will climb to 61 million, and six out of 10 will be managing chronic health conditions. For the elderly and others facing terminal illness, doctors have numerous ways to prolong life. Palliative and hospice care are available to help patients find peace and comfort in their final days. But there are some people who want another option, which is the right to end suffering by taking their own life at a time and place of their choosing.

The entire story is here.

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Others posts about end of life issues and Death with Dignity can be found by using the "search" function on the right hand side of this blog.

Dutch Euthanasia Rates Unchanged After Legalization

By Robert Preidt
MedicineNet.com
Originally published July 10, 2012

The rates of euthanasia and assisted suicide in the Netherlands in 2010 were comparable to the rates before the practices became legal in 2002, a new study finds.

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Researchers analyzed the Netherlands' death-registry data and found that the total number of euthanasia and assisted-suicide deaths in 2010 was 4,050, slightly less than 3 percent of all deaths.

The rates of euthanasia and assisted suicide in the Netherlands decreased between 2002 and 2005, but increased between 2005 and 2010. The increase was due largely to a rise in the number of patients requesting to end their lives, the researchers said.

The entire story is here.

The research from The Lancet is here.