Expansion of ‘death with dignity’ laws raises practical, ethical questions for patients, providers

The concept of physician-assisted death has gained considerable political traction in the early 21st century.

For more than a decade, Oregon had been the only state with what is known as a “death with dignity” law. The legislation, in effect since 1997, allows terminally ill patients to self-administer lethal medications prescribed by physicians specifically for that purpose.

Three other states have followed suit in the past 6 years. In 2008, Washington enacted a measure that allows competent adults who have a life expectancy of 6 months or less due to a diagnosed medical condition to request and self-administer lethal medication. Vermont adopted a comparable law in May 2013. Montana allows the practice through court precedent.

Now, lawmakers in Pennsylvania, Massachusetts and Hawaii are considering similar bills that would legalize physician-assisted death.

The legislative efforts have significant consequences for members of the health care community — particularly those who care for patients with cancer.

“When this type of legislation passes, institutions and clinicians are immediately faced with the question of whether to participate,” Elizabeth Trice Loggers, MD, PhD, a medical oncologist and board-certified palliative care consultant who is the medical director for palliative care at Seattle Cancer Care Alliance, told HemOnc Today. “Regardless of the decision, the institutional response typically requires a significant amount of work, including writing a policy, educating clinicians, and preparing to answer questions from patients and caregivers.”

HemOnc Today spoke with several clinicians to gauge their perceptions about this type of legislation, the medical and ethical dilemmas it raises, and whether physician-assisted death is necessary given the other options available to terminally ill patients.

Frequency of use

Under legislation that allows physician-assisted death, patients with all terminal illnesses can request lethal medication. However, patients with cancer account for most cases.

About 78% of the 255 patients who utilized Washington’s Death with Dignity program had cancer as their underlying terminal diagnosis, according to a report by Loggers and colleagues published in April 2013 in The New England Journal of Medicine.

In the report, Loggers and colleagues outlined the experience of their comprehensive cancer center with regard to implementation of its Death with Dignity program. Most patients at Seattle Cancer Care Alliance who participated in the program were white, male and college-educated. The most common reasons cited for participation were loss of autonomy (97.2%), inability to engage in enjoyable activities (88.9%) and loss of dignity (75%).

However, the number of patients who self-administer lethal medication remains low, accounting for an estimated 0.02% of deaths among patients at Seattle Cancer Center Alliance.

Of the 114 patients treated at the institution who inquired about Death with Dignity between March 2009 and December 2011, only 40 (35.1%) received a prescription for a lethal dose of secobarbital, Loggers and colleagues reported. Of them, 24 patients — 21% of those who inquired — ingested the lethal medication and died. More than one-third of patients (38.6%) decided not to pursue the program. Thirty patients (26.3%) initiated the process but either chose not to obtain a prescription or died before completion of the program.

Participation also is low in other states, according to Timothy E. Quill, MD, the director of the Palliative Care Program at the University of Rochester Medical Center.

“In Oregon, it’s about one in 500 deaths,” said Quill, professor of medicine, psychiatry and medical humanities at the University of Rochester School of Medicine and Dentistry and a board-certified palliative care consultant. “One in six patients discusses it with their family, and one in 50 talks to their doctor about it. There is a lot of conversation about it, but relatively few patients actually follow through with it.”

There are several possible explanations, Loggers said.

“First and foremost, cancer is a transformative experience,” she said. “What people learn when they are faced with their own mortality is that they want to live and love more fully, and using Death with Dignity for most of the population isn’t something they are going to pursue.”

In the review by Loggers and colleagues, 11 patients lived for more than 6 months after they obtained the lethal prescription.

“Both patients and families frequently express gratitude after the patient receives the prescription, regardless of whether it is ever filled or ingested, typically referencing an important sense of control in an uncertain situation,” Loggers and colleagues wrote.

Ethical dilemmas

Proponents contend physician-assisted death may be a rational choice for patients who do not want to endure pain, distress or loss of quality of life — including states of being they find objectionable (ie, dependency or inability to do the things they enjoy). Some advocates also suggest the act of assisting patients with death may be part of physicians’ duty to alleviate suffering.

“These arguments rely a great deal on the notion of individual autonomy, recognizing the right of competent people to choose for themselves the course of their life, including how it will end,” the Death with Dignity National Center, a nonprofit organization that has helped defend the legality of Oregon’s Death with Dignity law, contends on its website.

Critics, however, contend physician-assisted death is unethical and contradicts a physician’s core mission to preserve life.

“The program is designed for patients to whom you are unable to provide relief, and the only way to provide relief is for them to end their lives, but I’m not sure that this circumstance exists,” said Jeffery C. Ward, MD, a medical oncologist at Puget Sound Cancer Centers and medical director at Providence Hospice and Home Care of Snohomish County in Washington. “I don’t know that I accept this as a necessary thing in our society. What I think is necessary is good palliative care. The reason we have the Death with Dignity Act is because we haven’t provided state-of-the-art palliative care, and this becomes an easy out.”

Physician preferences

In 1997, Quill was a part of a landmark court case — Vacco v. Quill — that focused on the right to die.

The US Supreme Court ruled 9-0 that New York’s ban on physician-assisted suicide was constitutional, and that states had the authority to regulate whether physicians should be able to help patients die.

“This case that was presented to the Supreme Court argued that when terminally ill patients request this type of assistance, doctors should have the right to be able to respond if it’s within their value structure, provided that people meet certain criteria. There is no obligation to respond, but they should be able to respond,” Quill said. “The court ruled against allowing the practice for the entire country, but let it be known that if the states were going to decide to legalize it, they would not interfere. They clearly have not interfered with the places that have legalized.”

A year later, a study by Quill and colleagues, designed to evaluate clinicians’ views about assisted death, appeared in The New England Journal of Medicine.

Quill and colleagues mailed surveys to 3,102 physicians from 10 specialties most likely to receive requests for assisted death, including hematology-oncology, neurology, infectious disease and geriatrics. Sixty-one percent of recipients responded.

The surveys, completed before Oregon enacted the country’s first Death with Dignity law, showed 11% of respondents were willing to hasten a patient’s death by prescribing medication, but 36% would have done so if it were legal. Results showed 7% at that time were willing to provide a lethal injection, but 24% would have done so if it were legal.

At the time of the survey, 18.3% of physicians reported having received a request from a patient for assistance with suicide, and 11.1% had received a request for lethal injection. Results showed 3.3% of physicians surveyed indicated they had written at least one prescription to hasten death, and 4.7% had administered at least one lethal injection.

“Our study showed that several factors were associated with physician participation in hastening death, including region of practice, religion and specialty,” Quill and colleagues wrote. “Repeated ballot measures and the debate over the legalization of physician-assisted death in California, Oregon and Washington may have led to higher frequency of requests received by physicians in those states and may have influenced their willingness to honor these requests.”

In 1999, Linda Ganzini, MD, MPH, professor of psychiatry and medicine at Oregon Health & Science University, and colleague mailed surveys to 4,053 physicians eligible to prescribe lethal medications under Oregon’s Death with Dignity Act. Sixty-five percent of recipients participated in the survey, results of which were published in 2000 in The New England Journal of Medicine.

Of the respondents, 144 (5%) had received a combined 221 requests for prescriptions for lethal medications within the prior 2 years. Researchers received data about outcomes for 165 of the patients who made those requests. Mean age of the patients was 68 years, and 76% had a life expectancy of less than 6 months. Eighteen percent of patients received prescriptions for lethal medication, and 10% died from ingesting the prescribed medication.

Data showed physicians pursued at least one substantive palliative intervention — such as pain control, hospice referral or antidepressant medications — to 68 of the 165 evaluable patients. The percentage of patients who changed their minds about assisted suicide was significantly greater among those who received those interventions than those for whom substantive interventions were not made (46% vs. 15%; P<.001).

“Palliative interventions result in some, though not the majority, of patients changing their minds about assisted death,” Ganzini told HemOnc Today. “Almost half of patients offered palliative interventions changed their minds about assisted death compared with 15% not offered palliative interventions. Loss of independence, poor quality of life and wanting to control circumstances of death were the most common reasons for requests for lethal prescriptions — all reasons not easily remediated by palliative care.”

Additional data indicated that 81% of those who died by assisted suicide were enrolled in a hospice program and 21% had symptoms of depression. None of the patients with documented symptoms of depression received a prescription for a lethal medication.

“Depression has been reported in 59% to 100% of terminally ill persons interested in assisted suicide or another means of hastening death and in 80% of patients with cancer who committed suicide,” Ganzini and colleagues wrote. “We could not determine whether depression was, in fact, less common in persons in Oregon who requested a prescription for a lethal medication or whether the physicians failed to detect depression in some instances. Nonetheless, most of the respondents reported that they had made efforts to improve their ability to recognize depression in terminally ill patients. Only 11% of the patients who either received a trial of medication for depression or anxiety or were evaluated by a mental health expert changed their minds about obtaining a prescription for a lethal medication.”

The ‘last resort’

The findings from Ganzini and colleagues demonstrate that the benefits of palliative interventions support the argument that all other strategies should be employed before physician-assisted death.

“The one thing that you want to make sure of is that patients who are terminally ill are receiving excellent palliative care because excellent palliative care is able to address the vast majority of suffering,” Quill said. “If they are receiving this and it is failing, that’s when you get into the ‘last resort’ options.”

Even then, self-administration of lethal medication is not the only choice, Quill said.

“There are other options besides assisted death that we have much more of a societal agreement upon — for example, very aggressive opioid treatment for severe pain or shortness of breath, stopping life support if that is no longer contributing to a patient’s well being, or stopping other potentially life-prolonging treatments that a patient no longer wants,” Quill said. “Assisted death should only be the last of the last resorts.”

Physicians should use inquiries about physician-assisted death as opportunities to help patients learn about their options, including hospice and palliative care, Loggers said.

“We want to use this opportunity to talk about their prognosis — the fact that they are dying — to get the help they need, to build their legacy for themselves and for their family, and to help them finish any unfinished business so they can die in a dignified way and have all of their goals met,” Loggers said.

Role of nurses

Two major nursing societies — the American Nurses Association and the Hospice and Palliative Nurses Association — do not support the Death with Dignity Act.

Although nurses typically do not play a role in assisted deaths, they often are the ones in whom patients confide when they want to learn more about their options.

“The nurse does not write the prescription or administer the drug, but what does happen is that patients ask nurses about it because of the trusted relationship established,” Carla Jolley, RN, ARNP, an oncology/palliative care advanced practice nurse and pain management coordinator for Home Health & Hospice of Whidbey General Hospital in Washington, said in an interview. “Patients will ask us about ‘the black pill’ and ask, ‘Is there something you can do to help me?’ When I mentor younger nurses, I always ask them to explore what the question behind the question is. In other words, do they really want to end their life, or are we missing something important?”

According to a 2012 study published in the Journal of Hospice and Palliative Nursing, little attention has been given to educating nurses about Death with Dignity laws — and, more importantly, the role they play in implementation.

For this reason, Jablonski and colleagues used an anonymous Web-based survey to assess nurses’ knowledge and personal views about the Death with Dignity Act. The 582 nurses who participated were licensed in Washington state and were members of the Washington State Nurses Association.

Results indicated that only 7% of nurses surveyed were educated about the law when it was enacted. Sixty-three percent said they were in favor of the law; 28% indicated they were not in favor because of moral or religious reasons.

Nurses should encourage the hospital or institution where they work to develop a policy or procedure that addresses their role regarding support or participation, Jolley said, adding that hospice or palliative care unit staffs also can provide valuable information for those concerned about how best to address patients’ questions.

In one respect, Death with Dignity laws are designed to make sure patients and providers are not making quick decisions.

“Patients often are not educated about the Death with Dignity Act, and they think they are going to do it last minute,” Jolley said. “But it’s not last minute. It often takes 4 to 6 weeks to go through the process. There are some thoughtful measures in place to make sure patients are screened and supported and are not making rash decisions.”

Still, the process takes an emotional toll on caregivers.

“The downside of it, what weighs heavy on my heart, is that I see nurses struggling regarding how best to support patients and families, and not feeling like they have failed if they choose to follow through and use the medication to prematurely end their lives” Jolley said. “Because the medication has to be ingested by the patients themselves, the patient must choose a time when they can still swallow and keep the medication down. This does not lend itself to an imminent dying scenario. This has caused a lot of distress for hospice nurses because, while they do not participate in the process, they are often asked about when the best timing is from the patient. This can be very hard for nurses.”

Continuing the conversation

Loggers said she and colleagues of The New England Journal of Medicine article published their work in part to “continue the conversation” of physician-assisted death on a societal level.

“This is a completely voluntary program, not just for patients but also for the physicians involved,” Loggers said. “Our main goal is to maintain the long-standing relationships that are present between patients and doctors, and to promote patient and family involvement in these types of decisions to ensure they are well-informed of all other alternatives. We hope we have created a policy and program in which ethical concerns can be dealt with in a way that is positive for physicians, patients and their families.”

One component that remains up for debate is the language used to describe the legislation that allows physician-assisted death.

“The term ‘death with dignity’ implies that other deaths may not be dignified, and I think the use of this language was part of the political conversation at the time that this law was being voted on by Washington state voters,” Loggers said. “Now that we have moved on from the referendum, I hope we are having more refined, nuanced conversations, where we can talk with the public about what ‘dignified’ deaths are and how we can achieve those in all kinds of ways that don’t necessarily include assisted suicide.”

With more states expected to adopt similar legislation, Ward said he is concerned that the movement will be more of a grand social experiment for which extremely limited and poorly developed data are being collected.

“The Death with Dignity Acts in Washington and in Oregon are both voter initiatives,” Ward said. “Voter initiatives are great, but they often are simplistic because that’s how we get voters to vote for them. By being simplistic, important pieces are often missed. Both of these legislative events leave all kinds of unanswered questions about what this means to both patients and to our society.”

Quill expressed a different perspective.

“Creating a referendum is hard to do. It requires a lot of resources,” he said. “For this law, most legislatures are not mature enough to come to grips with these issues in the modern era. Referendums at least make it ‘the will of the people’ and, in that sense, this is a good subject to have people debate so they can think through the options that patients have.” – by Jennifer Southall

References:

Death With Dignity National Center. Physicians’ Frequently Asked Questions. Available at: www.deathwithdignity.org/resources/physiciansquestions. Accessed on Jan. 20, 2014.

Ganzini L. N Engl J Med. 2000;342:557-563.

Jablonski A. J Hosp Palliat Nurs. 2012;14:45-52.

Loggers ET. N Engl J Med. 2013;368:1417-1424.

Meier DE. N Engl J Med. 1998;338:1193-1201.

For more information:

Linda Ganzini, MD, MPH, can be reached at Oregon Health & Science University, 3181 S.W. Sam Jackson Park Road, Portland, OR 97239; email: ganzinil@ohsu.edu.

Carla Jolley, RN, ARNP, can be reached at Whidbey General Hospital and Clinics, 101 N. Main St., Coupeville, WA 98239-3413; email: jollec@whidbeygen.org.

Elizabeth Trice Loggers, MD, PhD, can be reached at Seattle Cancer Care Alliance, 825 Eastlake Ave. East, P.O. Box 19023, Seattle, WA 98109; email: eloggers@seattlecca.org.

Timothy E. Quill, MD, can be reached at University of Rochester School of Medicine, Box 687, 601 Elmwood Ave., Rochester, NY 14642; email: timothy_quill@urmc.rochester.edu.

Jeffery C. Ward, MD, can be reached at SCI Medical Oncology at Ballard, 5300 Tallman Ave., 3 East, Seattle, WA 98117; email: jeffery.ward@swedish.org.

Disclosure: Ganzini, Jolley, Loggers, Quill and Ward report no relevant financial disclosures.

Should the term ‘death with dignity’ be changed?

Yes. The phrase “death with dignity” implies some deaths are dignified and others are not.

Death is not an option. It is a part of life. We have precious little to say about the cause of our death, but we do have some say as to how we die.

The idea that some deaths are dignified and others are not is implied by the aphorism death with dignity. What constitutes dignity at the time of our death is a very personal opinion. Dying on a battlefield can be viewed as dignified or undignified based on one’s core principles. What most of us wish for is comfort, peace and self-respect during our final phase of life. This wish can be fulfilled in a variety of ways. Taking a lethal dose of medication allows one to alter the time of death but does not, however, assure comfort, peace or even self-respect (ie, dignity).

The hospice model of care at the end of life provides for a variety of palliative measures while promoting autonomy involving critical decisions. Improving the quality of life for the dying allows more of us to die at home with a calmness that can never be duplicated in an institution. By emphasizing the ability to take one’s own life as the path to dignity, proponents of death with dignity often lose sight of the more pivotal aspects of dignity. We all want a dignified death but rarely does that include suicide. Patients with ALS may be the one group where the timing of death is intimately related to self-respect and where control of symptoms may be beyond the scope of hospice medicine.

Something has to change. Death with dignity has to include more than just picking the time and place to kill one’s self, or the phrase has to be used by all of us to demand that last measure of a good life.

Kenneth G. Kraemer, MD, is a physician in the department of hematology-oncology at the Swedish Cancer Institute. He can be reached at Swedish Cancer Institute, 13333 Bel-Red Road, Bellevue, WA 98005; email: kenneth.kraemer@swedish.org. Disclosure: Kraemer reports no relevant financial disclosures.

No. Objections to the name may be due to individuals’ perceptions rather than the name.

There seems to be a focus on labels and branding on our society. Labels do help people to separate products from one another and decipher political groups’ messages. Corporations hope their brands will evoke emotional responses, linking consumers to their products.

Some may object to the name “death with dignity” because it labels a certain method of dying as dignified. However, that objection might be due to a limitation in those individuals’ perceptions rather than a problem with the name itself. After all, labeling one method of dying as dignified does not mean that dying peacefully at home under the care of hospice is any more or less dignified.

We do not live in a binary world. Life is too complex to be defined simply as “right” and “wrong.” Often, there are as many solutions to a problem as there are individuals.

For truth in labeling, the legislation could be called the Statute for Patient Requests of Self-Administered Life-Ending Medications Prescribed by a Physician. Or it could simply be referred to by its legal designation — Oregon Revised Statute Chapter 127.

Regardless of what it is called, residents of Oregon with a terminal diagnosis can request life-ending medications from a physician. When patients ask physicians about it, they call it anything from physician-assisted suicide to death with dignity.

However, the reason for the request tends to be the same — an individual’s desire for some degree of control over a terminal condition for which there is little chance of cure.

Kevin W.H. Yee, MD, is a staff physician at Oregon Health & Science University’s Knight Cancer Institute Tualatin. He can be reached at OHSU Knight Cancer Institute Tualatin, 19260 SW 65th Ave., Suite 140, Tualatin, OR 97062; email: yeek@ohsu.edu. Disclosure: Yee reports no relevant financial disclosures.