Guest Editor
Jamie H. Von Roenn, MD
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is ASCO’s Vice President of Education, Science, and Professional Development.
Despite the controversy surrounding “Death With Dignity” laws, which allow physicians to prescribe life-ending drugs to terminally ill patients, they have a long history of majority support from Americans. According to a Gallup poll taken in 2015, nearly 7 in 10 Americans (68%) agreed that physicians should be legally allowed to assist terminally ill patients in ending their lives,1 a level of support that has remained steady since the question was first posed in 1977.2 (Support for the law briefly jumped to 74% in 2014, after the publicity surrounding the physician-assisted death of 29-year-old Brittany Maynard, who had been diagnosed with glioblastoma multiforme.3)
A majority of physicians also now accept Death With Dignity legislation. According to a large survey of medical professionals taken in 2014, 54% of respondents favored the legislation, compared with 46% in 2010.4
Oregon’s Death With Dignity Act
In 1997, Oregon became the first state to pass an initiative allowing terminally ill patients to self-administer prescriptions for lethal drugs to end their lives. Today, Death With Dignity legislation has been approved in California, Washington, Vermont, Colorado, Montana (court decision), and the District of Columbia, and dozens of other states are considering similar laws.
It is my experience that the patients I’ve aided were grateful to have this option, regardless of whether they took the medication or not. I’ve never had a patient regret being in the program.— Charles D. Blanke, MD, FACP, FASCO
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To evaluate the use of Oregon’s Death With Dignity Act over its 20-year history and disseminate trends, results, and opportunities for cancer care delivery research areas, Charles D. Blanke, MD, FACP, FASCO, and his colleagues analyzed information collected by the Oregon Health Authority on the number of lethal prescriptions written as well as data on patient demographics and intended use. Their results5 were presented at the 2016 Palliative Care in Oncology Symposium.
The findings of their analysis showed that between 1998 and 2015, 1,545 patients had Death With Dignity Act prescriptions written, and 991 patients took the medication and died. The vast majority of patients using the law had cancer (77%); they were predominately white (97%) and had a median age of 71 years. Gender was evenly split.
The main reasons cited by a large majority of patients for wanting the lethal prescriptions included loss of autonomy and dignity and an inability to enjoy life. Lack of pain control was cited by 25% of the patients. Most patients (94%) were in home hospice care when they took the medication and died at home. The data also show that prescription rates for lethal medication grew by 12% per year through 2013 and then by an average of 24% in 2014 and 2015, not attributable to growth in the population.
Oregon’s Death With Dignity Act requires that patients have a life expectancy of less than 6 months; prescribers have an MD or DO degree and are licensed to practice in the state; patients must be capable of making and communicating their health-care decisions; attending physicians must inform patients of alternatives to the lethal prescription, including comfort care, hospice, and adequate pain control; and patients must make three separate requests for the lethal medications.
The ASCO Post talked with Dr. Blanke, Professor of Medicine at Oregon Health & Science University Knight Cancer Institute in Portland and Chair of the Southwest Oncology Group, about his study’s findings, the ethical dilemma posed by Death With Dignity laws, and his experience with physician-assisted death.
Surprising Findings
Your study takes a thorough look at the implementation of Oregon’s Death With Dignity law since its inception 2 decades ago. Did anything surprise you about your findings?
I was a bit surprised by how rarely the prescribing or consulting physicians refer patients for a psychiatric consultation. According to our study, only 5% of patients received these referrals. In national surveys, many psychiatrists say that depression among terminally ill patients would disqualify them from participating in physician-aided death.
I was also surprised to learn how rarely a physician is present when the patient takes the medication—in only 17% of cases is that so. My guess is that physicians aren’t asking what their patients would prefer, because when I’ve asked my patients if they would like me to be present when they take the medication, 100% say “yes.”
The prescription rate for lethal medication held steady through 2013 and then spiked in 2014 and 2015. To what do you attribute this increase in prescriptions?
There are several factors, including greater national awareness of this issue and the fact that there are several other states now with this legislation in place. Also, some of the medical societies that formerly opposed the law, such as the American Medical Association, have softened their stance and agreed to study whether they should be neutral on physician-assisted death.
Whether the change in opposition actually affects patients, I don’t know. But it might affect their physicians’ willingness to talk to them about aid in dying.
(Editor’s note: Although ASCO has taken no official position on physician-assisted suicide, in a 1998 position statement on high-quality end-of-life care,6 which neither supported nor condemned the practice, the Society recommended that physicians engage their patients in discussions about their concerns regarding how they might die, explain what comfort care will be provided, and assure patients that they will not be abandoned.)
Another interesting finding from your study is that patients taking lethal medication were overwhelmingly white (97%). Do you know why the law isn’t being embraced by other races?
That finding is challenging to interpret. The general population in Oregon is mostly white, and whether that is the reason a high number of white patients are utilizing the law is difficult to say with certainty. A very large percentage of the patients also had a college education, which doesn’t necessarily match the overall demographics of the state, so that finding was also surprising.
It is not easy for patients to find doctors willing to participate in physician-assisted death, so it takes a fairly savvy patient using a computer or having an understanding of the complicated referral system to find a physician to write the prescription and a pharmacy to fill the prescription. That may be a reason why the study showed so many of the patients had a college education; that might make them more likely to know how to navigate the system.
Ethical Dilemma for Oncologists
Despite the broad public acceptance for Death With Dignity laws, some physicians refuse to prescribe the lethal medications. Please talk about the ethical or moral dilemma these laws pose for oncologists.
The issue is multifactorial. Often there is a religious objection to the law. More commonly, it could have to do with the precept in medicine of doing no harm to patients. In fact, the original Hippocratic oath states that it is unethical to give poisonous medications to patients, and some physicians see physician aid in dying as harm, but others, like myself, see it as the opposite of harm. We have patients who are suffering horribly, and we are helping to end their suffering, so I don’t see how that can be construed as harming our patients.
However, physicians are also faced with the reality of giving a patient a medication that is guaranteed to kill that patient, and regardless of your position on these laws, taking that action is very challenging for any human being, let alone a physician. Of course, I totally understand the dilemma physicians face.
I also think physicians sometimes feel that if they offer this choice, patients will believe they are being rushed to take the easy way out or that it is easier to offer death with dignity than to come up with a long-term care plan or a palliative care plan. There can also be institutional pressure on physicians not to engage in physician-assisted death.
Informed Consent
Your study found little evidence supporting the fear that disadvantaged patients are disproportionally using physician-assisted death or that patients are coerced into the choice. In your experience, have you found any suggestion that patients are being rushed into decisions or that they do not fully understand the ramifications of their actions?
No, and that is a claim that bothers me the most. When the Death With Dignity Act was first passed, critics asserted that the procedure would be foisted upon the poor and the uneducated, and there is no evidence of that from the demographic analysis we did and from the work of many, many other researchers.
There certainly is worry that a family member might push the medication on a patient because of financial concerns, but that scenario is harder to measure. Rarely, you do get a sense that there may be some outside pressure on patients to take the medication, but I can only say from my many years of experience in these cases that, in most instances, it’s the patients who want the medication and the family members who oppose it. So, no, I don’t think there is any evidence supporting claims of abuse.
Giving Patients Control
How do you personally feel about participating in physician-assisted death?
I’ve aided many patients in ending their lives, but it is never an easy decision. I never initiate the conversation with my terminally ill patients. I always let them raise the issue on their own. And while I strongly support their right to pursue physician-assisted death, I always tell patients we should first exhaust all other avenues to relieve their symptoms and improve their quality of life, and I make absolutely sure that they are palliated as effectively as they can be.
However, I strongly feel that there are some patients you simply cannot palliate. They have concerns about their quality of life and their ability to do the things they enjoy, they are suffering relentlessly, and they want to take back some control over their life. Physician-aided death not only doesn’t cause harm, in my estimation, it can give people that extra bit of control over their life, including the 33% of patients who fill the prescription but never take it. Just having the prescription on hand gives patients an immense feeling of control and comfort.
Importance of Effective Palliative Care
Regardless of a physician’s position on Death With Dignity laws, how can oncologists engage their terminally ill patients in discussions about their concerns regarding how they might die; explain what comfort care will be provided; and assure them they will not be abandoned?
The first step for oncologists is to talk to their incurable patients early on in the care process about what happens when active therapy is no longer effective and to reassure them that even when that happens, there will still be ways to help them remain comfortable.
I tell my patients that there is always something I can do to help them and that while I may not be able to treat their cancer any longer, I can help with symptoms they may be experiencing such as depression, insomnia, or pain. That said, we should never be afraid to talk to patients about their demise.
It shocks me to hear from terminally ill patients—referred to me for aid in dying—that they were never told by their oncologist that they had a terminal disease. It’s possible that a patient might not have heard that part, but it has happened to me often enough that I believe some patients who come to me to talk about ending their lives genuinely don’t know they have a fatal disease—and that is not acceptable.
In addition, I would say that we need to use our palliative care teams much earlier in cancer care and more effectively. There are plenty of patients who would not consider death with dignity if they had better palliation, so we need to introduce palliative care medicine in the process much earlier.
The only other comment I’d like to make about physician-aided death is that in states where the procedure is legal, it is perfectly okay if a physician is uncomfortable writing a prescription for the lethal medication and refuses to do it. But when a physician refuses even to refer patients seeking help to a physician who is willing to write the prescription, that is problematic.
Death With Dignity is a legal option in several states, and patients in those states have a right to utilize that option. Physicians have an ethical obligation—not to offer the option, if they are personally opposed to it—but to understand what the process entails, to be knowledgeable enough to explain to patients the pros and cons of their decision, and to refer them to a physician if they still want to pursue physician-assisted death.
Sticking your head in the sand and refusing to take part at all during this critical time in a patient’s care does a huge disservice to that patient.
No Regrets
Have you experienced regret from family members of patients who have ended their lives with lethal medication?
No. The only regret I’ve heard from family members is that it took so long to find a physician willing to write the prescription. I often follow up with my patients’ families to see how they are doing or at least make sure they can contact me if they have any questions, and I have not encountered any regret whatsoever.
It is my experience that the patients I’ve aided were grateful to have this option, regardless of whether they took the medication or not. I’ve never had a patient regret being in the program. ■
Disclosure: Dr. Blanke reported no potential conflicts of interest.
References
1. Dugan A: In U.S., Support up for doctor-assisted suicide. Gallup. May 27, 2015. Available at www.gallup.com/poll/183425/support-doctor-assisted-suicide.aspx. Accessed March 3, 2017.
2. Duncan OD, Parmelee LF: Trends in public approval of euthanasia and suicide in the US, 1947-2003. J Med Ethics 32:266-272, 2006.
3. Thompson D: Most Americans agree with right-to-die movement. The Harris Poll. December 2014. Available at www.theharrispoll.com/health-and-life/Most_Americans_Agree_With_Right-to-Die_Movement.html. Accessed March 3, 2017.
4. Kane L: Medscape ethics report 2014, part 1: Life, death, and pain. Available at www.medscape.com/features/slideshow/public/ethics2014-part1#3. Accessed March 3, 2017.
5. Blanke CD, LeBlanc ML, Hershman DL, et al: Usage of Oregon’s Death With Dignity Act (DWDA). 2016 Palliative Care in Oncology Symposium. Abstract 44. Presented September 10, 2016.
6. American Society of Clinical Oncology: Cancer care during the last phase of life. J Clin Oncol 16:1986-1996, 1998.
