VSED- Voluntarily Stopping Eating and Drinking - A Mindful Approach to Dementia & Psychedelics
VSED- Voluntarily Stopping Eating and Drinking is a legal option to hasten death in Canada and in every one of the fifty states in the US. I had initially thought VSED would not be an option, thinking that as spouse and caregiver, it would put me at legal jeopardy; but if followed with certain considerations, I have learned otherwise.
Is voluntarily stopping eating and drinking something feasible? Would Henry consider this as a viable option? Henry immediately said, “Yes.”
Henry and I have just come back from a beautiful fall walk, the air crisp, the sun warming us, brilliant colors of the leaves in every direction. We strolled along the meadow, then circled the pond at the forest edge. As we walked up the slight incline toward the house, our calm silence was broken with Henry’s firm, “I want to die here, at home.” This was shared from a deep place to further the VSED option. It is really the only viable option that would allow for staying at home.
The more I learn, the more I am shocked to learn that this possibility is just becoming known to us, years after Henry’s dementia was obvious and about two years since a formal medical diagnosis. As I wrote in a much earlier blog, once Henry was approved and eligible for DIGNITAS in Switzerland, he knew he had the option to choose his time of transition. Knowing this has empowered the process of living with Alzheimer’s. If more people knew from the get-go that VSED is an option, perhaps this same sense of empowerment would be helpful. It would also take away or diminish the fear of years of possibly being bed-ridden, fed, and cleaned, and clothed in a memory care unit.
We now embark on a big learning curve. As of this writing, Henry is about to register his updated advanced directive and submit a dementia advance directive as well. I have an appointment with a lawyer tomorrow pro bono from an organization that includes dealing with VSED. I believe being of sound mind when the decision is made is of utmost importance. Having advanced directives, including the dementia advanced directive, may prove crucial. Making a video of the person’s clear wishes as evidence of the process is another consideration, as well as further evidence during the process. Setting up a team of support, including hospice help, and having an appointment sooner rather than later with his physician to go over a possible VSED plan is to be made.
I have been documenting, in real time, our journey. We take each step with an openness to consider, inquire, to be open-minded—mindful inquiry, a way of considering and sitting with many unknowns as they become clearer. Henry may choose VSED. He may not. This mindful approach cultivates space for what arises. Like a fall leaf finding its way to the ground, these major decisions find a way that touches and quietly lands in the heart space of deep knowing. VSED is a possible new crossroads in this journey. For now, we hold it as a possibility as we learn more and further contemplate this option.
So for today, I thought it would be helpful to do something out of the ordinary. Namely, I am copying information from two very helpful resources, the Compassion and Choices and Vermont Ethics Network websites. We have also ordered two books: Voluntarily Stopping Eating and Drinking: A Compassionate Widely-Available Option to Hastening Death, and The VSED Handbook: A Practical Guide Stopping Eating and Drinking. Here is some of the information found on these websites that we have found helpful.
“VSED Defined
For many years, it has been a settled issue in both law and ethics that an adult with decision-making capacity who is unable to take food and fluids by mouth has the right to refuse nutrition and hydration by medical means (usually a feeding tube), even if doing so will hasten death. Less attention has been paid to the question of when an adult with decision-making capacity who is capable of eating and drinking on his or her own may refuse to do so. This is VSED.
In VSED, the patient is capable of ingesting food and drink by mouth, but chooses not to in order to hasten death. He or she deliberately refuses all food and fluids save for small amounts of fluid needed for mouth comfort or to swallow medications. Death by dehydration ordinarily follows in several days to three weeks. A growing body of clinical literature suggests that with good palliative support, VSED results in a relatively comfortable and peaceful death (see “Experience of VSED” below).
It is important to distinguish VSED from the natural loss of appetite that often occurs when a patient is close to death. The loss of appetite as death approaches is a normal consequence of the shutting down of body functions that accompanies advanced illness. By contrast, with VSED a patient intentionally refuses food and drink to bring about death before the underlying disease progresses to the end stage. The patient chooses to die from dehydration rather than from the underlying illness.
VSED is also distinguishable from anorexia nervosa, which is a form of mental illness in which the patient irrationally values weight loss over the risk of death that follows from refusing food and drink. The choice of a grievously ill person to stop eating and drinking rather than endure pain and suffering as the illness progresses is not irrational and does not by itself indicate mental illness.
VSED also differs from Physician-Assisted Dying (PAD) in important ways. While both VSED and PAD intentionally hasten death, in VSED the physician does not provide the means for the patient to hasten death. Both the decision to refuse nourishment and the means for carrying out that choice—i.e., fasting—are inherently in the patient’s hands. The physician’s role is to discuss the available options and, if a patient seeks hastened death, to explore the sources of suffering, seek ways to ameliorate it, and support the patient regardless of whether or not he or she chooses VSED.
Legal Issues in VSED
It is a fundamental principle of both law and medical ethics that “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.” For this reason, performing a medical procedure without a patient’s consent is a battery. The same principle governs the right to refuse unwanted medical care. With respect to adults capable of making their own medical decisions, this right is virtually absolute, applying even when refusing treatment means the patient will die. The right to refuse unwanted treatment is recognized as part of the constitutional right to privacy, growing out of the core ethical values of respect for individual autonomy and self-determination.
VSED is morally and legally consistent with the right to refuse unwanted care. However, VSED has not been the subject of high-profile court cases in the way that other so-called “right to die” issues have been. Possibly, the reason VSED has received so little attention is that few clinicians and fewer patients are even aware that VSED is an option. Possibly, it is because the alternative to honoring a gravely ill or dying patient’s informed choice to refuse food and drink is to force-feed him or her, a prospect repugnant to courts and clinicians alike.
A key case in this area is a 1986 case, Bouvia v. Superior Court. In Bouvia, a 28-year-old woman who suffered from quadriplegia, cerebral palsy, and chronic pain, but who was not terminally ill, sought a court order to be allowed to die in a hospital by refusing to eat or drink, while also receiving morphine to relieve any pain symptoms she might suffer as she died. Finding Ms. Bouvia to be both intelligent and decisionally capable, the court granted her request and turned back a request by the facility where she lived to insert a feeding tube.
Still, there remain many unanswered legal, ethical, and practical questions about how and when a VSED request can and should be honored. The boundaries for honoring a VSED request aren’t always clear, as for example, when the requester suffers from multiple chronic conditions, but is not terminal, or when the requester is terminal, but has a life expectancy of more than six months. A common question for nursing homes and other health care facilities is whether honoring a VSED request might violate state and federal laws protecting patients against abuse and neglect. Some facilities assume, incorrectly, that it would. Another area of uncertainty is whether a person can request VSED in an advance directive.
While it is ultimately a competent individual’s choice to stop eating and drinking, health care facilities need to respond to VSED requests in an organizationally coherent and clinically consistent fashion and to develop clear policies and procedural guidelines for handling VSED requests. Educating patients about VSED can empower them to make fully informed choices about whether this choice is right for them. Concerned patients and facilities should seek legal advice.
Is VSED right for me?
Typically, VSED is a choice made by adults approaching life’s end who want more control over the timing and manner of their death. Most people who choose this option for dying are already near the end of life due to illness or advanced age, in serious or accelerated physical health decline, or facing impending cognitive decline from diseases like dementia. They may be already experiencing a loss of appetite. Others have refused or ceased artificial nutrition and hydration. Sometimes dying people choose VSED because they are not eligible for or cannot access medical aid in dying where they live. Beginning the VSED process is not a way to become eligible for medical aid in dying. To learn more about medical aid-in-dying eligibility, visit: CompassionAndChoices.org/medical-aid-in-dying
What if I have a dementia diagnosis?
Because VSED is voluntary, you need to be able to make your own decision to undertake it. If you have mild dementia, you are probably able to make a VSED decision. In moderate dementia you may or may not be able to make a decision. In severe dementia you will not be able to make this decision. Physicians can evaluate you for decision-making capacity.
Healthcare providers typically determine whether a patient’s decisional capacity is intact through interviews, which might include multiple conversations with more than one clinician.”
- Lauren Alderfer, PhD.
