Voluntarily Stopping Eating & Drinking (VSED), An Option for the Dying
by Janie Rakow
As we teach in our trainings, one of the fundamental tenets of an end of life doula is to support the wishes of the dying person. This involves the difficult decisions they have made and upholding their choices in whatever manner they have decided. In our medicalized society, the palliative options around death are becoming more complicated. In INELDA’s September 2016 newsletter, we spoke about the doula’s role in medically aided dying. Similarly, doulas will have a role in another intervention, voluntarily stopping eating and drinking (VSED). To navigate the complicated paths at end of life, doulas need to be educated about this choice as well because it is likely to become more common in the years ahead.
VSED is the action a competent person may take to choose when they will die. The choice might result from living with persistent and unacceptable suffering that can’t be managed well or as the result of a decision to avoid a prolonged death. Although doulas often encounter people at the end of life naturally withdrawing from food and drink, it is more unusual to see patients who intentionally refuse food and water in order to hasten death. This is the choice of the dying person, and it does not require a physician’s directive. The dying person must choose to refuse food and water. The right of competent informed patients to refuse life-prolonging interventions, including artificial hydration and nutrition, is firmly established and not illegal. It is also legally permissible to simply stop eating and drinking at any time a person chooses.
In addition to relieving suffering, proponents of VSED say it gives the dying person back the control that is often missing at end of life. The dying person decides how their death will unfold. As death is not immediate, a person dying in this way can take time to say their goodbyes and reflect on their life in ways someone opting for medically aided dying can’t. A person choosing VSED also has more time to explore meaning and create a legacy project, if they choose to do that. It certainly will give them a chance to share their feelings with loved ones while they still have the mental capacity to do so.
Opponents of VSED think that starvation or dehydration is morally and ethically wrong. Similar to the discussion about medically aided dying, people against taking control over one’s dying for religious reasons say the timing and nature of the dying process should be left up to God. Others say dying in this way may be painful and lead to additional suffering. There is no firm answer to this later claim, but many in the medical field dispute the validity of this thinking. The doula’s role is not to judge, but to support the dying person in his or her decision.
The process of dying through the approach of VSED typically takes anywhere from a few days to three weeks, depending on the condition of the person as they stop eating and drinking, the extent and nature of their illness, and to some extent their will to die. A number of years ago doulas following the INELDA model worked with a man who was dying of tongue cancer. He had availed himself of all that western medicine could provide and many alternative approaches, which he traveled far to receive.
He had already suffered so much loss and pain that although he could still take care of himself, and his mind was intact, he decided that he had had enough and didn’t want to prolong his dying. He planned to stop eating and drinking on an upcoming Saturday to bring about his death when his lack of food and fluids would allow. As it turned out, he changed his mind and stopped all intake the day before, on Friday morning. By late Friday night he started actively dying and his death occurred by early Saturday morning. His death was incredibly peaceful and without any signs of pain or discomfort. We know that most VSED deaths take longer. And some may not be this peaceful. But, it is certainly a choice each person has the right to consider.
The current guidelines for VSED in a hospital or hospice setting are not yet uniform. In September 2013, the National Hospice and Palliative Care Organization called on its 2,000 member hospices to develop policies and guidelines addressing VSED. Many hospices and palliative organizations are considering those policies now so they can address the questions and choices their patients and families will have about VSED.
As doulas, we may be called upon to aide people and families that are going through a VSED death. Continued presence and support of the dying person and family is essential. The tools and techniques we teach and doulas offer are still applicable to a VSED death. In fact the dying process and vigil will be very similar to what happens for people who allow their illness to determine how and when they will die. Even with a VSED death nurses and doctors can provide supportive care to the process, including, when appropriate, medicines to ease any discomfort that may occur.
Doulas should help a dying person talk to their family and friends about their decision to pursue VSED. Because this choice can be difficult for family to accept, it is important for them to hear why the dying person is making this choice and have the opportunity to fully express their feelings. If family fear that the dying person is making this decision because of depression or a compromised thought process, it may help to have a psychological evaluation to reassure them that this isn’t the case. The support of loved ones can be crucial to how peacefully the process unfolds.
Good bereavement support after the loved one has died is also imperative. While we all have our own religious and cultural beliefs, it is important to put that aside in our role as doulas. I know that my own beliefs have changed over the eight years of working with people who are dying. Keeping an open heart and mind is crucial in this complicated and emotional work we do as end of life doulas.