Aid in Dying and Palliative Sedation

Abstract

Dear Editor:

“Please…help…me, I…can't…breathe.” Debra's eyes bounced around the room, her hands grasping the sides of her mattress. Three weeks ago she had asked for medication to end her life, but was denied. Now a large tumor was compressing her trachea, and she was suffocating.

“I…want…to…end…it…now,” she begged. Her chest heaved as she struggled to gasp a breath. “Please…help…me…die…………now.”

Her mother sat bedside nervously wringing her hands over and over, a worn Bible open on her lap. Her only daughter was dying, and there was nothing she could do. “Help her, doctor,” she said. “Please, help…help her die. Give her the medicine. God don't want her to suffer like this.” How hard that must have been for a mother to say.

“I can't,” I said. “I'm not allowed to. But I can sedate her right now, and keep her sedated until she passes.” I turned to Debra. “Is that okay with you, Debra?” She frantically nodded in agreement—but what other choice did she have?

As I watched her drift into a terminal somnolence, I pondered the muddied contradiction that legally separates aid in dying and palliative sedation. I was prohibited from assisting Debra's death by prescribing medication that she could take, but I could order an intravenous medication that would end her life in hours to days. The incongruity seemed absurd. Yet, opponents of assisted dying argue there's a difference between the two, that with physician aid in dying, the drug directly causes death, while with sedation, the disease causes death. They also argue that the intent of aid in dying is to hasten death, while with sedation, the intent is to relieve symptoms. But I disagree. In fact, I don't think there's a difference between the two at all—they're fundamentally the same: both relieve suffering and symptoms, both use sedative medications, and both end in death—it's just that one takes a little longer.

Still, there are impassioned arguments against physician aid in dying. Many fear the criteria will be gradually expanded to include those that are most vulnerable—the old, the disabled, the poor, and the mentally ill. Others fear there will be coercion, exploitation, or surreptitious use without informed consent, also targeting the old, the disabled, the poor, and the mentally ill.¹ Still others argue there's a godly prohibition against man's right to take his own life, while many simply feel a tinge of uncertainty and moral apprehension. However, appropriate evaluation of a request for hastened death, along with proper regulation and monitored use,^2,3 such as written and oral requests, waiting periods, a mandate of repeated requests, and documentation of concurrence by a second physician, reduces the likelihood of abuse and/or misuse. For example, in Oregon, where aid in dying is legal, only 105 people died with physician assistance in 2014 (out of 34,160 all-cause deaths), of which 93% were either enrolled in hospice at the time the prescription was written, or at the time of death. Moreover, since the law was passed in 1997, a total of 1327 prescriptions have been written, with 859 patients electing to use the medication to end their lives.⁴ Clearly, Oregon's experience (see Table 1) refutes the concerns of rampant and uncontrolled use of assisted dying, particularly among vulnerable populations.

Table 1.

Data from The Oregon Death with Dignity Act, 2014⁴

155 prescriptions written, 94 (60.6%) patients ingested the medication

11 ingested medication from prescriptions written in 2012–2013

Ingestion status of 24 patients unknown, further status pending

Percentage of all deaths in Oregon by ingesting medication under the Death with Dignity Act during 2014: 0.31%

37 patients did not ingest the medication and died of other causes

Of the 105 deaths, 67.6% were aged 65 or older; median age was 72

95.2% of decedents were white

47.6% had at least a baccalaureate degree

68.6% had cancer, 16.2% had amyotrophic lateral sclerosis

89.5% died at home

93% were either enrolled in hospice at the time the prescription was written, or at the time of death

Excluding unknown cases, 100% had some form of health insurance

60.2% had Medicare or Medicaid

3 most common end of life concerns: autonomy (91.4%), dignity (71.4%), and decreasing ability to participate in activities that made life enjoyable (86.7%)

Prescribing physicians were present at the time of death for 14 patients (13.9%)

83 physicians wrote the 155 prescriptions

However, there's another and perhaps more persuasive argument that contends the availability of palliative care precludes the need for physician assisted death. It's an argument that is both compelling and demonstrable, for palliative care has helped reduce refractory suffering and the need for assisted death by the use of psychosocial and spiritual support, and aggressive symptom management, including palliative sedation. But it's an argument that ignores patients like Debra, when aid in dying, even in the presence of exceptional palliative care, can allow a more peaceful death. In addition, there are others who simply want to end their lives with dignity rather than linger the final days or weeks of life, irrespective of the benefits of palliative care.

And Debra? She lived for 10 days after she was sedated, finally dying on the morning of the 11th day. When I arrived at her room, her mother was bedside, reading from the Bible with tears in her eyes. I reached over and hugged her.

“It was a long 11 days,” she said, “a long 11 days.” She paused, then said, “She's skin and bones, she just wasted away…she just wasted….” Her voice trailed off. She took a deep breath, grabbed Debra's hand, and said, “That's not my Debra, doctor, that's not my Debra.” I cradled her shoulders, but as I looked at her worn face, I was worried—worried how those 11 days at bedside would affect her grief and bereavement, and how the emotional anguish of watching her daughter wither away would trouble the remaining years of her life.

References

Radbruch

, Leget

, Bahr

, et al.: Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care. Palliat Med, 2016; 30:104–116.

Orentlicher

, Pope

, Rich

: Clinical criteria for physician aid in dying. J Palliat Med, 2016; 19:259–262.

The Oregon Death with Dignity Act: A Guidebook for Health Care Professionals. www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-Death-with-Dignity-Act-Guidebook.pdf. 2014. (Last accessed December 23, 2015.)

Oregon's Death with Dignity Act. 2014. public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf). (Last accessed November 5, 2015.)