Bioethics Forum Essay
Hospice and Medical Aid-in-Dying: Addressing an Unethical Disconnect
Most patients who die with medical aid in states where the practice is legal are enrolled in hospice, but coordination between those providing hospice care and those providing medical aid-in-dying (MAiD) is woefully inadequate. Many hospice facilities have policies against supporting patients who request MAiD and do not disclose these policies to prospective patients, even in states where disclosure is required. Knowing what interventions are available is a fundamental component of ethical medical care, especially at the end of life when selection of an appropriate hospice can make a big difference.
Reports from California and Washington describe patients struggling to find providers, pharmacies, and hospice facilities that will accept them after they have requested MAiD. We recently completed a study that illuminates the scope of this problem by assessing compliance with a California law, S.B. 380, that requires health care facilities to post their MAiD policies on their websites. Our research reveals that roughly 60% of hospice facilities fail to comply with the law. Among the facilities that made their policies publicly available, we found significant variations in the clarity of communication about how MAiD requests would be addressed.
These findings are concerning because of the interconnectedness of MAiD and hospice care. In 2021, 91.6% of Californians who died following ingestion of aid-in-dying drugs were enrolled in hospice or palliative care. Washington and Oregon have reported similar data. It seems that many patients enroll in hospice after they first request MAiD – a Kaiser Permanente study in Southern California found that as few as 48% of patients were enrolled in hospice when they first requested MAiD. Patients deserve to know whether a hospice facility will support their wishes.
Our research identified other concerning information. Numerous hospices require patients who wish to pursue MAiD to be discharged and transferred to another facility. These patients risk delays in accessing MAiD, extending their suffering. In addition, two facilities in our review used inaccurate or misleading terminology for MAiD. One facility used the term “provider-hastened death” and stated that it encompasses euthanasia. Euthanasia is different from MAiD and is illegal throughout the U.S. Preliminary data from the next phase of our research, which reviews policy transparency of health care facilities in all jurisdictions in the U.S. where MAiD is legal, has identified the same problems found in our California study.
We urge all health care entities in jurisdictions where aid-in-dying is legal to post their aid-in-dying policies in a readily identifiable location on their websites. Policies should use accurate, unbiased, easy-to-understand language. Disclosing this information on facilities’ websites is necessary, but not sufficient. It leaves the burden of responsibility on an individual to know where and how to find it. Facilities should take extra steps to ensure that this information is not merely posted but is received and understood by patients. One way this can be accomplished is to require disclosure of a MAiD policy during admission discussions with prospective patients. Another option is providing patients and their family members with explicit direction to the online policy at the time of hospice intake with nursing staff. This would ensure justice and equity in access to information.
As our research and advocacy continue in this area, we welcome further debate and discussion on improving access to accurate and transparent information for patients considering “life-ending” care.
Gianna R. Strand, MS, DBe, is a postdoctoral researcher in health policy and research ethics. She is the director of research at the Completed Life Initiative. @completedlife
David N. Hoffman, JD, is an assistant professor of bioethics at Columbia University and a clinical assistant professor of bioethics at Albert Einstein College of Medicine. He is a board member of the Completed Life Initiative. @ethicsoncall
Karin Sobeck, RN, MSN, MSBe, is a transplant coordinator and faculty teaching associate at Columbia University, and former chairperson of the National Hospice Organization.
Sarah J. Kiskadden-Bechtel, MSBe, is the program director at the Completed Life Initiative and a faculty teaching associate at Columbia University. She is editor-in-chief emeritus of the journal Voices in Bioethics. @skb_bioethics
All authors are members of the Empire State Bioethics Consortium. @NYSBioethics