The legalization of assisted death in Canada, and in some parts of the United States, has provoked both controversy and contemplation. Questions arise from a desire to understand what compels patients to request assisted death and whether there are opportunities to relieve the types of suffering and address the concerns that lead to such requests. While some have argued that the legalization of assisted death has provided an additional option to alleviate end-of-life (EOL) suffering, others have suggested that it may diminish the perceived need for comprehensive EOL care.
The following depicts my experience exploring a patient's request for assisted death. Emma (name and identifying details have been changed) was a 45-year-old woman who had undergone an allogeneic hematopoietic stem cell transplant for leukemia six months earlier. I first met her when the hematology unit where she was being treated requested a palliative care consult after her request for an assisted death. As I got to know Emma and her family over the ensuing days, I learned she had spent much of the previous six months either in the hospital or at home, confined to a bed for most of the day.
During our visits, we spoke about Emma's goals, her wishes, and what brought her joy. She longed to be able to visit with family and friends, take care of her house, and spend time in her garden. Now, to Emma, even these seemingly simple goals appeared unattainable. Further, before she became ill, Emma had been an accomplished and prolific artist. Chemotherapy-induced neuropathy and intense fatigue had impeded her ability to paint. She no longer spent any time in her art studio and lamented the erosion of a sense of self connected to the process of artistic creation.
As we explored her wishes for EOL care, Emma told me her preference was to remain at home for as long as possible. Since she was from a small rural community with limited palliative home care services, at least some of her care would almost certainly need to be provided by family. However, she balked at the idea of her husband providing EOL care and agonized over the impact provision of such care might have on her husband and children. While Emma's physical symptoms were well managed, the existential distress she experienced was unrelenting as she faced ever-multiplying losses, including that of her independence, her dignity, and opportunities to enjoy life in ways she always had. Notably, Emma did meet with hospital psychosocial and spiritual care clinicians, who acknowledged her sense of despondency but did not feel she was clinically depressed.
While awaiting the two mandatory assessments to determine her eligibility for assisted death, Emma died in the hospital. Since then, I've wondered what I, as her palliative care NP, could have done to help her find joy despite the progressive worsening of her condition.
Emanuel and colleagues (JAMA, 2016) have suggested that patients’ requests for assisted death are most often motivated by the inability to enjoy life, worry of being a burden to others, and fear of loss of dignity, rather than related to pain or symptoms. While there are innumerable options to manage pain and other physical symptoms at the end of life, the mitigation of suffering in these other domains is more difficult. If loss of enjoyment in life is compelling people to consider assisted death, how can we help patients find joy again? Would the integration of services such as art therapy, music therapy, or pet therapy be beneficial? How can we quell the sense of burden patients feel? Would improving access to palliative home care and hospice assuage such concerns?
Now that assisted death is becoming a legitimate, legal treatment option, efforts should be undertaken to ensure that patients have access to every opportunity to optimize their quality of life and alleviate all aspects of their suffering. For unlike other options, such as a trial of an opioid for pain control, it is not possible to have a trial of assisted death.