Four years ago, Jonathan Witlaw's internist referred him to neurologist Bob Ferris for a work up. At the time, Mr. Witlaw reported having stumbled on several occasions over the span of 6 or 8 weeks. At first, he paid no attention, thinking he was just being careless or not looking at the pavement, but then he stumbled in his own apartment and knew he needed to check it out.
The work-up, including nerve conduction and electromyographic studies confirmed that Mr. Witlaw had amyotrophic lateral sclerosis (ALS). When Dr. Ferris called Mr. Wiltlaw to the office to discuss the test results, he had much information to share about support services—physical, psychological, and social. He told Mr. Witlaw that the disease progressed a little differently in each patient, but he was honest about the stages of the disease, what Jonathan could expect, and what would, eventually, cause death. Dr. Ferris explained the sorts of interventions that could help—physical therapy, speech and swallowing therapy, counseling, and the pharmacologic agents that together would help him manage his illness.
It turned out that the rate of Jonathan Witlaw's ALS progress was on the slow end of the continuum, and he fought it with all he had. A computer applications designer who lived alone, Mr. Witlaw was able to continue going to work for many months. When his leg strength deteriorated but his arm control still allowed him to type, he worked from home for a few more months.
About 2 years after confirmation of his diagnosis, Mr. Witlaw went on long-term disability. He received a portion of his pay, and his medical bills were mostly covered. He had been working with his therapists and counselors and had consulted a lawyer to "get his affairs in order." His living will stated that he does not want to be put on a ventilator or to receive a feeding tube when he was no longer able to swallow.
Dr. Ferris sees Jonathan every few weeks. A home nursing agency provides someone to accompany Jonathan in his wheelchair to the neurology clinic. On one visit, Mr. Witlaw asks Dr. Ferris to prescribe a barbiturate and tell him how best to use it "just in case." He wants to be able to commit suicide before he loses the ability to do it on his own.
"I don't have any family," Jonathan says. "No one's pleading for me to stay alive for those last few months of deterioration. And my decision is not influenced by depression—you know me well enough to know that, Doc," Mr. Witlaw says. "What I'm suggesting is pretty sane, under the circumstances, isn't it?"
Not comfortable with participating in Mr. Witlaw's plan, Dr. Ferris said, "Well, I'm told you can get information from many of those death with dignity organizations. Is that true?"
"Yeah, probably, but you've been my doctor through all this and I trust you. Tell me what's the best thing to take and then give me a prescription. I'll save them up from several prescriptions, if necessary. I won't make you look bad, I promise."
"Jonathan," Dr. Ferris said, compassionately, "I can't argue with anything you say, but, as a physician, I just can't participate in helping you commit suicide.
"Patient's best interest, Doc. Remember that?" was Jonathan's final attempt.
Patient requests for physician-assisted suicide (PAS) are common. Fifty percent of patients with ALS report being willing to consider PAS. Far fewer ALS patients ultimately make an explicit request for PAS, and fewer still end their lives by PAS. Yet ALS patients are substantially overrepresented compared to patients with other terminal diseases in Oregon's experience with legal PAS.
Physicians need not initially respond to a patient request for PAS with a yes/no answer. In the case, Dr. Ferris's first response Mr. Witlaw's plan is to express his moral opposition to PAS by recommending that Mr. Witlaw seek information from death with dignity organizations. Dr. Ferris responds as if the patient's request were fixed and unyielding. Data shows, however, that many more patients consider, and even explicitly request, PAS than ultimately use PAS to end their lives. Therefore, the appropriate first response to a patient request for PAS is to explore the request further.
An exploration of the following areas will usually uncover some underlying motivation for the request, which, when addressed, will meet patient goals without PAS.
Expectations and fears. Mr. Witlaw states that he wants PAS "just in case." He worries about "those last months of deterioration." Dr. Ferris should explore what scenario Mr. Witlaw envisions for his future that would warrant him to end his life by PAS.
Options for end-of-life care. Mr. Witlaw has already indicated his desire for no tube feedings or mechanical ventilation. He would benefit from knowing that he will likely lose the ability to swallow as he deteriorates, and that the inability to take food and fluids will prevent the lingering deterioration that he seems to fear.
Patient goals. Medical treatments, even PAS, can be evaluated based on their ability to meet certain patient goals. The rare patient who chooses PAS to end his/her life often expresses the explicit goal of controlling the time and place of death. Mr. Witlaw expresses the wish to "commit suicide before he loses the ability to do it on his own." But it is not clear from the case whether the primary goal is control the time and manner of death or to avoid lingering deterioration.
Family concerns and burdens. Many patients fear being a burden on family. Mr. Witlaw reports "I don't have any family." As an independent spirit, Mr. Witlaw may fear becoming dependent on others for care.
Suffering and physical symptoms. Uncontrolled physical symptoms such as pain, rarely influence a desire for PAS. In some patients, fear of future pain may play a role.
Sense of meaning and quality of life. ALS is perhaps unique in that patient decisions about treatment will vastly affect longevity. The patient with ALS who chooses gastrostomy feeding and mechanical ventilation can live years longer than those who refuse such treatments. Some patients may continue to report meaningful life and good quality of life despite the extraordinary limitations imposed by their infirmity. Alternatively, others will find that even modest restrictions in independence will create such a poor quality of life that death is preferable, either by refusal of life-sustaining treatments or PAS.
Depression. Patients who request PAS do not have an increased prevalence of depression. Rather, they score high on ratings of hopelessness, of finding no meaning or purpose in ongoing life. Sometimes the direct question, "Are you depressed?" is as effective a screen for depression as multiple question instruments.
The ethical controversy over PAS will continue. There is no simple answer to Mr. Witlaw's assertion of his right to PAS as "patient's best interest." Is it in the patient's interest to hasten death? And if so, does the patient's individual interest outweigh concerns that increased acceptability of PAS will cause harm to vulnerable populations?
Dr. Ferris should respond to the request with a detailed exploration with the patient of the areas noted above. Frequently, this exploration will lead to identification of concerns and goals that can be met without PAS. At times, requests for PAS will persist. The rare patient who chooses PAS usually has the goal of controlling the time and manner of death, and is motivated by the desire to avoid dependency. These are goals even the best medical intervention cannot help a patient accomplish. Death is by nature unpredictable, and, except for the rare sudden cardiac or traumatic death, requires one to be tended to by others. If indeed Mr. Witlaw persists in his desire for PAS, then Dr. Ferris may need to inform the patient that personal moral beliefs will prevent him from providing the prescriptions as requested.