Thaddeus Pope is a law professor at the Mitchell Hamline School of Law in St. Paul, MN, and Director of its Health Law Institute. He is an adjunct professor of bioethics and health law at several other academic institutions and programs in the US and abroad, and publishes extensively in those areas, particularly concerning end-of-life decision-making. He maintains the Medical Futility Blog. On November 18, 2018, he lectured on the topic “Avoiding Advanced Dementia with a VSED Directive” for the Hemlock Society of San Diego (HSSD).
The following notes are mine, for which Professor Pope should not be held responsible. My additional comments are in brackets. Handouts for the presentation can be found at the HSSD website and provide many links to additional resources. The slides used during the presentation can be found here. Readers can view a 59-minute video of Professor Pope’s presentation, which includes a brief question and answer period at the end.
In his lecture, Professor Pope discussed strategies to avoid advanced dementia for those who wish to do so. Some people, especially those contemplating dementia, will conclude for themselves that “death is not always good” and they will want to take steps to change that outcome. Others facing dementia may decide that “life is not always bad,” and they will accept dementia through all of its stages.
Anyone whose goal is to avoid a bad death, including with dementia, encounters two risks: (1) dying too fast and (2) dying too slow. It is now well-recognized that we have an absolute right to refuse or stop certain medical care or procedures, including a ventilator, dialysis, CPR, antibiotics, and a feeding tube. Knowing this allows someone with dementia to choose to refuse treatment for the underlying conditions, should they occur, and die before reaching the advanced stages of dementia.
The dilemma for those who wish to avoid the advance stages of dementia is choosing between two paths: (1) act now when you have capacity, or (2) prepare an advance directive for use later when you lack capacity.
Further complicating the dilemma, medical assistance in dying (MAID) is currently available in seven US jurisdictions only when a person has a terminal illness; that is, an incurable and irreversible illness that is likely to cause death within six months, and at a time when a person has decision-making capacity, defined as the ability to communicate and understand the health care decisions the person is making.
One exit option for those with dementia is to use inert gas to deprive the brain of oxygen (anoxia), as described in the book Final Exit. A person may be able to receive counseling and advice regarding this option from an Exit Guide [through the Final Exit Network].
Another option is Voluntarily Stopping Eating and Drinking (VSED), which causes death by dehydration, usually within 8 to 14 days, which is peaceful and causes little suffering when properly supported by good oral care and analgesics. One advantage of VSED is that it provides time for reflection, family interaction, and mourning.
An Oregon study of hospice nurses who attended VSED patients reports that it is an effective and useful exit method. Other similar reports about VSED can be found in 2018 articles in the Journal of the American Medical Association here, here, and here. (requires membership or purchase). VSED has been approved by the American Nurses Association, as well as by some hospice and palliative care groups.
VSED is an evidence-based end-of-life option that can be used when the current benefits of a person’s life are outweighed by the current burdens of a person’s life.
In the case of dementia, the point at which the future burdens of life outweigh the benefits–the point when the person believes life will be intolerable–will be different for each individual. A person with dementia will first lose decision-making capacity. Later, the person will reach the point where he or she has previously decided that life will be intolerable. If a person acts to exit before losing decision-making capacity, the person will have acted prematurely, sometimes referred to as “premature dying.”
An advance directive can be used to define when you want to stop being fed and hydrated–the point that you consider intolerable. However, there has been no specific legal determination anywhere in the US that requires health care providers to honor such an advance directive.
Professor Pope discussed 12 tips for writing a VSED advance directive:
1. Complete a regular advance directive. In a study involving 800,000 adults, only 37% had done so. Among older Americans, 70% have completed an advance directive. In certain populations, such as nursing home residents and hospice patients, the rates of completion of advance directives are much higher.
2. Appoint an agent whom you think is the best person to speak on your behalf about health care decisions when you can’t speak for yourself.
3. Appoint an alternate agent for any time when your agent is not available.
4. Designate who you do NOT want to participate in your health care decision-making.
5. Talk to your agent (and alternate agent) about your decisions so that your agent understands your goals and agrees to honor your wishes.
6. Have your agent review the role of an agent, using available laws and pamphlets so that they understand what their job will be. [See, for example, here, here, here, and here.]
7. Make your advance directive “findable” by health care providers. One-third of advance directives are not used because they can’t be located. Copies can be given to agents, family members, doctors, and attorneys, and placed on public or private advance directive registries where they can be accessed by health care providers.
8. Update your advance directive. Making one is not a one-time task. Consider updating at the time of these life events (the 6 Ds): (1) when you enter a new Decade; (2) upon the Death of a loved one; (3) Divorce; (4) Diagnosis of a significant health condition; (5) at the time of a Decline in functional abilities; (6) when you change your Domicile.
9. Add a POLST (Physician’s Orders for Life-Sustaining Treatment). [These are not available in all jurisdictions and may be called by other names, such as MOLST]. They are not for everyone. Usually they are used if you are likely not to live more than one year because of a serious illness or medical condition. A POLST is a physician’s medical order that is effective immediately. An advance directive is a recording of your wishes about medical care and is not usually immediately actionable.
10. Make sure your preferences in a dementia advance directive are informed by your own understanding and research. Explain what you mean by “advanced dementia.” Explain the research you have done. Use decision aids that present various health scenarios, such as charts of conditions and treatments, videos, and interactive questionnaires.
Stanley Terman’s “My Way Cards” can be a useful tool to help your clarify you wishes and goals. They are about sixty cards, [each of which contain descriptions of “the symptoms, losses of function, unwanted behaviors, and conflicts with lifelong values commonly experienced in Advanced Dementia and other terminal illnesses.” A person can sort through the cards to decide what interventions satisfy their goals and values.] See Terman’s website. References can be found also at the HSSD website.
11. Be clear about WHAT you are asking for. Two case studies reveal that phrases like “no nourishment or liquids” and “not kept alive by artificial means or heroic measures” are too ambiguous for a court to interpret exactly what is meant. The failure to include “hand feeding” in feeding instructions may mean that a facility will be obligated to provide that service, even if you don’t want it. For more specific language to use, see dementia advance directives for New York and Washington on the HSSD website.
12. Be clear about WHEN you want your preferences to take effect.
One final suggestion by Professor Pope is to record a video explaining your health care wishes and preferences. This will provide more evidence of your intent and decisions about health care for your future self. The more unusual the decision (and VSED is still a relatively new choice), the stronger the evidence needs to be that it is exactly what you want under the conditions you specify.
My thanks to the Hemlock Society of San Diego for the excellent and useful information provided at its website. I hope that readers who watch the video or who attended one of the lectures and finds that I got something wrong in these notes will post a corrective comment, or use the comment feature to add any suggestions to these lecture notes, or express their opinions about the subjects discussed.
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[EDITOR’S NOTE: No further posts are planned for the Good Death Society Blog until January 7, 2019.]
Excellent notes; thank you !
This is very important, timely and practical information. Many thanks to Dr. Pope and to Lamar for making it available!
Many thanks for your notes, Lamar.
At first, I didn’t think I was interested in this article, but now after spending 10 minutes with it, I’m looking forward to coming back to it. Studying it, making notes, pursuing web sites. Thank you!