(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. 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. 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. All authors are members of the Empire State Bioethics Consortium. Used with permission, this essay originally appeared in Hastings Bioethics Forum.)
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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.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
I’m glad to have this data. Thank you. I can use it in my presentations, and add it to my website, http://www.FinalExodus.org
I’m in Washington State. I checked my provider’s website. It does not participate in MAID, it says. But “if you are on hospice and explore this option, you do not need to stop your hospice care.” Gee, thanks, Virginia Mason Franciscan. So don’t get into hospice there?
I have a problem with unclear language and it needs to be addressed. When I started researching the issue of “Death with Dignity” that phrase referred to the diverse Bills and Laws in the US regarding personal autonomy in death. Our federal government in all its denial driven panic over even allowing the concept of death to be mentioned in its boardrooms and brothels decided that the best way to push the whole stinking mess to the back burner was to opt out of any national debate or inclusive fumigation by assigning the rights of making such legislation to the individual states to toy with and delay as they might. (Yes, I understand the process of creating constitutional change but most people don’t so no point in boring anyone with that discussion here.)
The acronym M.A.I.D. at that time was used to refer to the National legislation in Canada, not my country so not my problem but I encounter it all the time on the web sites which also serve as general clearing houses for desperately ill people looking for help in sorting the information out for themselves.
Current news in my state, Minnesota, is celebrating what it calls “Compassion and Choices” as its 4th or 5th attempt to get a bill out of committee in the state legislature over the past 10 years may have made it to the next step. Of course the populace of Minnesota has won the #passive/aggressiveawardinpublicpolicybyanyinterestgroup so often that “Nice” has become synonymous with P.A. But I digress.
The public needs a common universe of discourse for the topic of Death and personal autonomy so that it may discover, understand and evaluate the information. As there is no common way to do that in the US between states and international laws it is incumbent on authors to define and state clearly exactly what they are addressing and to whom. Don’t let PR spin and avoidance philosophy push the key word “DEATH” out of sight. It isn’t going to go away, it starts the day you are born.
In 2008, when my mother was dying of congestive heart failure, we found that the hospice program we selected would cooperate with VSED. Since then, I have suggested that, during the selection process, hospices also be screened for this method of controlling the end of life.
This is a valuable bit of information, and I am glad you kept it short and sweet. Those of us pondering how to effect our ending need all the relevant data and anecdotes. And, I am glad the Completed Life group is researching and sharing this kind of information.
I wonder the legal status, if you are terminal but decide to stay home with 24 hr care by nurses that are not with Hospice or Palliative Care? Who controls there? You are the agency that supplies the nurses…
And Lamar brings up a good point about VSED. If I’m at home with nursing care, can these nurses refuse to be hired by me if I want to refuse water and food?
Seems this ultimately would force a person just to try to do it on their own. Seems horrible.
That’s why people commit suicide themselves knowing how difficult it is to get MAID and such. I had no idea hospice, especially, could refuse to do this in a state where MAID is legal.
My mother was blindsided when her home hospice agency couldn’t control her pain and vomiting at home. They moved her to a hospice care facility for enhanced palliative care, which was also ineffective, and then denied her request for palliative sedation due to their concerns about legal liability. She was trapped. She enacted her only remaining option, VSED, and suffered horribly for almost three weeks until she became comatose. Even then, her body took several days to give itself over to death, during which time she literally decomposed in front of our eyes. NONE of these policies were what any reasonable person would expect from hospice care at end-of-life, nor were these policies disclosed up-front by the hospice agency. There are only two Medicare-accepting hospice agencies in her county, so if we had known the restrictions at one agency, we’d have only one alternative agency to try. That’s not a lot of options. What happens to patients when there are only one or two Medicare-accepting hospice agencies in their county, and neither one participates in MAiD, palliative sedation, VSED, etc.? How are patients to know in advance, and how many options do patients have if they wish to change agencies? My sister and I were willing to pay out-of-pocket costs for a private (for-profit) hospice agency, but there weren’t any in mom’s county and none were willing to offer care so far outside their reasonable mileage range. Certainly, there is an urgent need for clear communication about hospice policies to their patients…but if the only facilities in your area communicate openly, and their answers are all “NO,” the problem is even more daunting.
Wow oh wow, makes me extremely distraught for lack of a better word at the moment. Why does everything have to be so difficult? Where do facilities draw the line in death with dignity? Know that there are many stories in addition to the ones shared about access but see a lack of compassion for the one dying too. As an EOL Doula, aren’t we to take care of the wishes of the dying to the best of our ability without judgment, bias, do no harm…..MAID isn’t supported in my state yet but VSED is….curious now how many have been refused care.