Palliative care is care directed at comfort and quality of life for patients facing serious illness. The focus is on living and helping people retain as much of themselves and what matters despite difficult illness, largely through controlling symptoms and providing supportive care. We also help people formulate plans for when they are at the end of their lives. At some point, goals of care will shift from controlling disease and extending life, to comfort only and allowing death. The “when and how” that occurs is a personal path to navigate and can include physical and emotional struggles as well as times of joy and times of grief.
Act 39: Patient Choice at the End of Life, Vermont’s Physician Aid in Dying (PAD) legislation has stimulated discussion about suffering at the end of life and control over how one dies. PAD legislation allows a terminally ill patient to ingest lethal medication to hasten their death.
Having thoughts of hastening death are not uncommon near the end of life. Because of this legislation, more people may broach this subject with their physician, increasing the chances of addressing concerns of maintaining control and alleviating suffering, thus possibly avoiding the need to pursue PAD. But a few will pursue PAD–estimated at 6 patients a year in Vermont if similar to other states with PAD.
While physician participation in prescribing PAD is voluntary, being able to respond to a patient’s request by exploring the reasons underlying the request are essential. This can be a pivotal opportunity to deepen the conversation about a patient’s concerns and discuss how to maintain control of their life and their death.
For example, we can ask about what causes suffering now and discuss concerns for the future. We can ask what brings their life meaning. We can explore what may be going on when they think they cannot take it anymore, and what is going on when they think they can. We can help them define their goals of medical care now and identify conditions under which their goals would shift from prolonging their life to comfort only and allowing an illness to end their life. Moreover, we can assure them that no matter what they share with us we will not abandon them and will do everything possible to address their suffering now and in the future. Some patients will want specific information on the PAD option. Vermont Ethics Network website has complied concise information sheets for both providers and patients.
A challenge is present if one takes a strict reading of VT Act 25 Patient Bill of Rights for Palliative Care and Pain Management (2009) stating patients have the right to be informed of all options related to terminal care, which now includes PAD. However, listing options, especially PAD, is in conflict with how patients cope with, and make, end of life decisions. In particular, I find providing a menu of end of life care treatments is not usually helpful, wanted or recommended. I believe best practice is for end of life discussions to be nuanced and tailored to the patient’s goals, priorities and information preferences. The experience of practitioners from states with PAD is that the request for information should come from the patient and not initiated by the clinician or family.
As health professionals, we should strive to keep quality of life and relief of suffering a high priority throughout the course of serious illness, optimize timely use of palliative and hospice care services when needed, and align end of life discussions to patients’ elicited goals and concerns. Patient-instigated PAD discussions can lead to rich conversations that usually lead to addressing these without pursuing PAD and offer opportunity to improve living as well as dying.
Ursula McVeigh, MD, is a Palliative Care Physician and Interim Medical Director of Palliative Care at the University of Vermont Medical Center. She is also an Assistant Professor in the Larner College of Medicine at UVM.