VSED and the “rage against the dying of the light”

Many years ago, I sent Dylan Thomas’s poem “Do not go gentle into that good night” to a friend with a brain tumor, who was living then in Colorado, urging him to “Rage, rage against the dying of the light.” I would not do so today.

Two months after my communication with my friend, I visited him in a hospital in San Antonio. A week later, I gave his eulogy at a memorial service. I’ve learned more about death and dying in the last twenty-eight years than I knew then, enough to know that only a few people take Dylan Thomas’s advice. More and more people are accepting untreatable terminal conditions for what they are and opting for quality of life, no matter how brief that may be.

A couple of years after my friend’s death, I helped organize a Hemlock chapter in the Austin area. After the national Hemlock merged with another death with dignity group and changed its name to Compassion and Choices, some Hemlock supporters and organizers created the Final Exit Network to continue a Hemlock program that provides information and education about how to end one’s suffering when it becomes unbearable, often near the end of life. It is called the Exit Guide Program.

If you are reading this post, you likely know something about the program, so I won’t spend time explaining it here. To learn more about what can be done for oneself when disease and pain have rendered living intolerable, you can read Derek Humphry’s book Final Exit or one of the other books aimed at helping people avoid suffering at the end of life.

One of the other legal and accessible ways to hasten one’s death in the face of suffering, whether physical or existential, is called by several names; the most common one seems to be voluntarily stopping eating and drinking – VSED (vee-said). When I first learned of VSED about twenty years ago, I didn’t find much information in any one place. I learned about the subject piece-meal. I read about some of the undesirable effects of receiving artificial nutrition and hydration through tube-feeding or receiving ordinary nutrition and hydration when swallowing has become a problem. Both often result in the aspiration of particles of food or liquid, including stomach acid or saliva, which can lead to respiratory illnesses, such as pneumonia, that can develop repeatedly.

I learned that VSED doesn’t have to be a horrible way to hasten one’s death. With proper care, it can be done without pain or distress. The first two or three days are sometimes the most difficult because of hunger pangs and thirst. The hunger is easy to control if one has access to pain medication. The thirst can be ameliorated with proper oral care, such as judicious use of ice chips, rinses, and lubricating gels.

Some commenters seem to believe that VSED is a terrible way to die. It may be for some. My experience has been different. Two friends and one family member over the last nine years have used VSED to ease their dying process. They all had very good end-of-life resources and compassionate care. Theirs was not a horrible ending.

A basic overview of VSED from the Death with Dignity National Center is a good place to start learning about the subject.

One of the more recent publications worth reading is a pamphlet-sized book (78 pages) by a Dutch doctor, Boudewijn Chabot, “Taking Control of your Death by Stopping Eating and Drinking.” It is available from a print-on-demand service for $19.95. Chabot explains what is needed for VSED to be successful.

A short documentary, Dying Wish, is “about hospice patient, Dr. Michael Miller, an eighty-year old, retired surgeon with end-stage cancer who chooses to stop eating and drinking in order not to prolong his dying process, to ease his suffering and to die with grace.” The 29-minute film can be rented for $4.99 from Vimeo.

Based on my experience, having excellent palliative care, often available through hospice, is an essential ingredient for a good death using VSED.

Bibliograhies about VSED can be found here and here. Papers from more recent symposia and conferences that concern VSED should be available in the near future. Other resources are–

Not here by choice: Phyllis Shacter at TED – YouTube (TED talk by a woman whose husband hastened his death by VSED)

Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life  by Thaddeus Mason Pope, Mitchell Hamline School of Law (lengthy legal treatise about VSED)

The American Nurses Association position statement supporting VSED includes this summary statement, “When a patient at the end of life or the patient’s surrogate has made the decision to forgo nutrition and/or hydration, the nurse continues to ensure the provision of high quality care, minimizing discomfort and promoting dignity. Meticulous oral care should be provided in addition to comfort care, human touch and palliative care.”

Perhaps if Dylan Thomas had lived beyond his thirty-nine years, he would have understood what I now feel about death – often it comes as relief, even in the presence of regret. My mother at age 88 was worn out from the ravages of disease. Death was a welcome relief, not something to rage about. My father undoubtedly did not understand what was happening to him as his mind slowly faded into the fog of Alzheimer’s as he succumbed to a natural death. If necessary, I will be prepared for exiting this life using VSED. If adequate care is available, it is another way to find a peaceful and good death.