Over my years as a neurologist and neuro-oncologist, I have encountered patients who have requested “death with dignity” (DWD) — the right to autonomy in determining the time of death, freedom from pain, and release from a life of limited choices because of disability or fatigue.
I was able to consider this request in the abstract for many years until Washington voters passed Initiative 1000 in 2009 making DWD — also known as “physician-assisted suicide” by its detractors — legal. The rule allows physicians to prescribe a lethal dose of Seconal so that the patient can self-administer the drug.
The Washington Department of Health has requirements in place to ensure that all appropriate palliative care needs of the patient are addressed before a physician acts on this request. The patient has to have a terminal diagnosis defined as death that is likely to occur in six months. The attending physician has to document two verbal requests for DWD from the patient separated by a mandatory 15-day waiting period before accepting the written request. Then the physician must inform the patient of their right to rescind the request and honor an additional two-day waiting period before the prescription can be written. A second consulting physician must also agree with the diagnosis as well as provide counseling or psychiatric evaluation of the patient.
The law also requires the bereaved families, physicians, and pharmacists to report on the demographics of the patient population and the outcome of the requests.
THE RESULTS SO FAR
Of the 87 people who were prescribed lethal doses of medication in Washington State in 2010, we know 51 died after ingesting the medication and 21 died from natural causes related to their underlying disease. About 20 percent did not take the medication, though we don't know the reasons or circumstances why.
Those who died were between the ages of 52 and 99. Most had terminal cancer, though 10 percent had neurodegenerative diseases, including amyotrophic lateral sclerosis. According to prescribing physicians, all of the patients who received medication and died expressed concern about loss of autonomy as a reason for requesting a prescription and none experienced complications such as vomiting or awakening from their drug-induced coma before they died.
Because of the political debates that were being waged in Washington State in 2009 as well as my own involvement with my patients with primary brain tumors, palliative care was very much on my mind. But I was not sufficiently educated about opioid management, optimal treatment of constipation, or even how best to have difficult conversations about prognosis with my patients and their families.
Urged on by other neurology colleagues, I discovered that 2010 and 2012 were the last years that one could take the hospice and palliative care boards administered by the American Board of Psychiatry and Neurology without a requirement for a palliative medicine fellowship. There are several prerequisites for taking the exam: you must have treated 50 terminally ill patients in your career and attended 100 hours of palliative care rounds, and you must apply through the certifying board in your chosen specialty.
I chose to spend a week at St. Christopher's Hospice in London, home of Dame Cecily Saunders, the founder of the current hospice movement, and a week on the Palliative Care Service at Stanford. These opportunities, as well as curricular materials, are all available on the website for the American Academy of Hospice and Palliative Medicine: www.aahpm.org.
In 2010, I became the 46th neurologist in the US and Canada to hold dual certification in neurology and palliative care.
REQUESTS FOR HELP
I have since had DWD requests from two patients. The first patient had a terminal neurodegenerative disease and had repeatedly requested the right to die; she chose the date, said goodbye to loved ones, and planned her own goodbye party. She had clearly articulated goals that were fully supported by her loving family and was not depressed or in pain. Yet, when it came time to write the prescription, I was very fearful that it wouldn't be done right. I worried that she would not be able to self-administer the drug quickly enough, that she might have vomiting, fall asleep, wake up again, and suffer needlessly.
I realized that I have had no education for how best to prescribe a lethal dose of medication to allow someone to end his or her own life as it is obviously not a part of our medical school training. Despite my fears, however, she fell asleep quickly after taking only three-fourths of the dose and died one hour later very peacefully with her family at her side.
The second patient was a woman at home on hospice, quadriplegic from ALS on bi-level positive airway pressure (BiPAP) oxygen. She had repeatedly asked that her BiPAP mask be removed but she did not have the ability to remove it herself or to request DWD because she couldn't self-administer medications. She requested “terminal sedation to unconsciousness,” a rarely used and controversial form of palliative sedation. After extensive discussions with several colleagues, the patient, her family, her hospice nurse and the hospice medical director she was sedated to unconsciousness and died several hours later.
My experiences with these two patients taught me a lot about the practical management of this end-of-life issue. Indeed, learning about palliative care has given me a new way to think about challenges within our field and helped me to become a better physician. That said, while the academic materials and seminars may have exposed me to the science behind that care, my experiences with DWD leave me conflicted about the concept as a whole.
Not so my colleagues on the Palliative Care Service at the University of Washington. All of the physicians on their service are “opting out” of DWD. This is being done not necessarily because they are philosophically opposed to it; rather these physicians want to be clear with patients who are going through the DWD process that they will not be writing the prescription and that their only aim is to relieve pain and suffering, clarify the goals of care and optimize quality of life.
DWD is now legal in Oregon, Washington, and Montana. Physician-assisted suicide has been considered, and rejected, in other states. However, at least 24 other states allow citizen-led initiatives so this may be coming to your state soon led by Compassion & Choices, a nonprofit organization formed as an outgrowth of the Hemlock Society, which changed its name in 2004.
These initiatives raise tough questions for us all as caregivers. Is aid in dying a legitimate part of palliative care or a failure to provide adequate palliative care? In the end, these are very difficult questions. I find that it is easy to be against DWD as a general concept but sometimes very hard to reject it when faced with the very individual issues of a particular patient
Whether or not DWD is an option, we can better prepare for these end-of-life care decisions by seeking out more advanced training and education in palliative care management.
We all wish for a good death for our patients and, ultimately, for ourselves. I expect the debate about what that is and how to get there will go on for some time.
Dr. Taylor is director of neuro-oncology at the Virginia Mason Medical Center in Seattle, WA.
HOSPICE AND PALLIATIVE MEDICINE
In September 2006, ABMS approved the creation of Hospice and Palliative Medicine (HPM) as a sub-specialty of ten participating boards. The co-sponsoring boards include the American Boards of Internal Medicine, Anesthesiology, Family Medicine, Physical Medicine and Rehabilitation, Psychiatry and Neurology, Surgery, Pediatrics, Emergency Medicine, Radiology, and Obstetrics and -Gynecology. http://bit.ly/gHyk1h