Book Review: The VSED Handbook
by Kate Christie
Second Growth Books (2022)
Kate Christie is a technical writer who decided to write about her family’s experience with voluntarily stopping eating and drinking (VSED) so that others could know what to expect and how to handle it. Her book is slim, just seventy-two pages, but packed full with helpful information. It offers both timelines and tips. Her audience is those with a degenerative disease or other terminal condition that renders them unable to qualify for medical aid in dying, and individuals who are terminally ill and reside in a region where medical aid in dying isn’t available. VSED is authorized in every state and is an option for those who wish to hasten their death. It takes much longer to die than medical aid in dying, but is sometimes the only choice.
Christie’s mother suffered from early Alzheimer’s and made clear to everyone that she didn’t want to die among strangers. “If you put me in a nursing home, I will come back and haunt you,” she said. She feared an agonizing cognitive decline in a care facility where she would likely be sedated and restrained while she “slowly forgot every experience she’d ever had.” To avoid this, she would have to “give up good days to avoid bad years.” She told her doctor this was her desire and she told her husband and children the same, over and over; she would stop eating and drinking. When she decided the time had come, they were emotionally prepared. They had a private home where it could happen, the financial resources to hire the helpers they would need, and friends who would help with meals for those who were maintaining a vigil at the bedside.
Christie’s message is that dying by VSED can be successfully done but requires careful advance planning. There will be the need for a hospital bed, bedside commode, and walker, and for palliative medications prescribed by a medical practitioner. It is important to ascertain who one’s allies are. If there is dysfunction in the family, it’s not going to magically disappear because we announce that we plan to die. There have been instances of unsupportive family members calling in eldercare services to stop what they saw as abuse. Seeing an attorney early on is imperative, to draw up release-of-liability forms for family members and paid caregivers. Making a video explaining the reasons for wanting to die will be helpful to those who need reassurance, and at the same time, making a second video addressed to ourselves will remind us of why we want to die when we ask for food or water after the process has begun.
Accompanying someone through VSED requires being attentive every minute. During the early stage (1-4 days) the patient will be weak but fully present, able to enjoy conversations, listen to a playlist of favorite music, or perhaps simply enjoy a view from the window. The second stage, lasting various numbers of days, will include thirst, weakness, agitation and/or confusion and palliative medications will need to be provided. Managing medication levels properly can mean the difference between a peaceful death and a harrowing one. The last phase (1-4 days) will include agitation, delirium and unconsciousness, and the entire process may take as long as two weeks.
Contrary to widely held belief, hospice visits are intermittent, so it will be important to have other bedside caregivers. Family members should be allowed to participate or not according to their comfort level. Often, they will want someone medically trained to administer the medications. They may want paid caregivers to help with bodily hygiene, while feeling comfortable themselves offering lip balm, oral foam swabs and atomizer spray.
There are other things to think about. Addictions need to be recognized and dealt with before the process begins, to avoid withdrawal symptoms. Anti-anxiety medication should be tested. Calories should be reduced and one should consider a colon cleanse.
The Christie family wondered if there might be a faster, more humane alternative to dying by VSED, such as a drug overdose, but they decided that taking a deliberate action to end life felt different from VSED, in which an individual fails to take an action (eating and drinking). If the overdose didn’t work and the suicide failed, that would only make matters worse.
Medical aid in dying might have been the Christie family’s choice – she says as much – if the law had allowed it for someone suffering from dementia. In the absence of such a law, this is a helpful book for those who are caught in the bind.
Review by Susan Gillotti, PCV Board Member
3/15/2023 06:54:12 pm
Many thanks for all the work you do.
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