How to Die a Good Death

Today, we explore the possibilities of how to have control over your own death – retaining dignity, privacy, and pain relief. And we start with a close look at hospice.

We have all sorts of detailed stats about dying, but little about the experience of death. For the minority who die under the care of palliative care teams, one’s death could probably be described as good. But there’s a suspicion that for the majority who die in hospitals or nursing homes, the experience is bad. And that’s where most people die. In spite of widespread preference to die at home, in almost all populations, most deaths occur in institutions. And this doesn’t just have consequences for the patient, but for the bereaved caregivers as well. Patients with cancer who died in an intensive care unit or hospital experienced more physical and emotional distress, and worse quality of life, at the end of life. And their caregivers suffered five times the odds of suffering posttraumatic stress disorder and nearly nine times the odds of severe, prolonged disabling grief.

When researchers have looked into the care of dying patients in hospitals, it hasn’t been pretty. Basic interventions to maintain patients’ comfort were often not provided. Contact with dying patients was minimal, and the distancing and isolation worsened as death approached. For example, a 52-year-old woman with metastatic cancer spread to her liver. She had gross abdominal distention, was jaundiced and very breathless, but alert. Her eyes were swollen, and she shed yellow tears. The patient received no care from the nurses delegated to give care. Yet, in the nursing record it was recorded that attention had been given to her personal hygiene, pressure areas to prevent bedsores, oral hygiene, and eyes. But it was all a lie. The only attention she got was to receive a commode from a nursing assistant. Contact time totaled six minutes over the 4.5 hours the researchers kept track.

In contrast, what would a good death look like? Retaining control, dignity, privacy, pain relief, you choose where, you chose how, emotional support, respecting your wishes, saying goodbye, being able to leave when it’s time to go, and not have life prolonged pointlessly. One’s best bet for all that is access to hospice care.

Palliative care is comfort measures to relieve symptoms and improve quality of life utilized at any stage of a serious illness, whereas hospice is just comfort measures, when focus shifts from curing the disease to improving the quality of one’s last days. Hospice is often framed as “giving up,“ but ironically, when you compare hospice versus non-hospice patient survival, the patients in hospice actually live longer. Patients who choose hospice care live on average about a month longer than similar patients who do not choose hospice. Randomize those with advanced lung cancer to early palliative care, and they don’t live a month longer—they live two and a half months longer! That’s like the survival benefit you might get with a standard chemotherapy regimen. And in fact, that’s one of the ways hospice could extend survival––by avoiding the risk of overtreatment with chemo and its related toxicity.

There are, however, limits to palliative care. Even under hospice, where one would assume excellent palliative care, there are those who appear to unavoidably spend their last months in uncontrollable pain. And this unbearable suffering, despite our best efforts, leads to requests for ending a patient`s life prematurely. Although physician-assisted suicide is gaining acceptance, it’s only legal in eight states plus D.C.

In contrast, VSED is legal throughout the U.S.Voluntarily stopping eating and drinking (VSED) can be defined as a conscious decision to voluntarily and deliberately choose to stop eating and drinking, with the primary intention of hastening death because of the persistence of unacceptable suffering. I’ve talked about fasting to extend one’s life; what about fasting to shorten it?

We hear a lot about physician-assisted suicide, but VSED has not gained nearly as much attention. This is presented as perplexing, since supposedly it’s a relatively peaceful and comfortable way to die. But is it really? How long does it take? How would you do it? I’ll talk about the pros and cons and practical implications next.

Perhaps, in an ideal world, every patient with a life-limiting illness would receive optimal hospice and palliative care, such that no one would ever wish to hasten their own death. Unfortunately, the reality is that despite our best efforts, some with terminal illness continue to suffer, leading increasing numbers of patients across the country to explore VSED to escape intolerable suffering (voluntarily stopping eating and drinking).

Some of the pros include dying at home, which is most people’s preference. You don’t have to spend your fleeting hours dealing with doctors and lawyers. There is no waiting period. In Oregon, for example, their Death with Dignity Act requires a 15-day waiting period before you can get physician assistance, whereas choosing to stop eating and drinking would seem to afford more control. Even just knowing it’s an option can be a comfort.

Those who learn about VSED may feel empowered by the knowledge that they can choose this option without seeking anyone’s permission, and because it’s legal, it can be openly discussed. Just knowing that there’s “a way out’’ can provide relief from feelings of desperation and entrapment. And that feeling of control may itself be therapeutic. It can also prevent people from contemplating a more violent way out, and patients don’t have to feel pressured to end their life prematurely while they still can. Physician-assisted death with dignity laws require patients to take the lethal drug cocktail themselves. If you have ALS and are worried about losing your muscular function, you might feel the need to end your life before you’re ready, while you still have the capacity. In fact, Dr. Kevorkian’s first was a woman diagnosed with Alzheimer’s, who wanted to end it before it got too late––potentially depriving her and her family of years she might have still been able to enjoy.

And while physician-assisted suicide entails a single instantaneous and irrevocable act, death from VSED occurs over several days, allowing time for the patient to change their mind and for healing goodbyes. But what is it actually like? There are lots of anecdotes floating around describing death from VSED as peaceful, painless, and dignified. Fortunately, the evidence is more than just anecdotal. There have been several independent studies. So, let’s look at the data.

Average time of death after stopping eating and drinking was about seven days, though 8 percent lasted more than two weeks. And how was it? Ask a hundred hospice nurses, and on a scale from 0 (a very bad death) to 9 (a very good death), the average score for the quality of these deaths, as rated by the nurses, was 8. The researchers concluded that people usually die a “good” death within two weeks after stopping food and fluids, according to the nurses rating those last days of life as peaceful, with low levels of pain and suffering. More so, even, than those who chose physician-assisted suicide. This was in Oregon, and so, patients could have chosen that instead. But nearly twice as many patients decided instead to take matters in their own hand by voluntarily stopping eating and drinking.

Interestingly, loved ones seem to agree, with voluntary refusal of food and fluids perceived as carrying less ‘‘emotional baggage’’ for the family, more letting go than taking a more active approach. A study in the Netherlands that interviewed confidants, like friends or family that witnessed it, found that most considered it a “dignified death.” Hospice physicians seem to agree, with nearly 90 percent surveyed reporting that their VSED patients experienced peaceful and comfortable deaths.

The state of terminal dehydration may even have some analgesic effect, some pain-killing effects, presumed to be due to the release of endorphins, which act as natural pain blockers. So, concluded this review, VSED may reflect all 12 principles of a “good death:” retaining control, dignity, etc.

One of the most famous accounts was Dr. David Eddy’s description of his own mother’s VSED: “My mother was elated. The next day happened to be her 85th birthday, which we celebrated with a party, balloons and all. She was beaming from ear to ear. She had done it. She had found the way. She relished her last piece of chocolate, and then stopped eating and drinking.
Over the next four days, my mother greeted her visitors with the first smiles she had shown for months. She energetically reminisced about the great times she had had and about things she was proud of. (She especially hoped I would tell you about her traveling alone across Africa at the age of 70, and surviving a capsized raft on Wyoming’s Snake River at 82.) She also found a calming self-acceptance in describing things of which she was not proud. She slept between visits but woke up brightly whenever she was touched to share more memories and say a few more things she wanted us to know. On the fifth day it was more difficult to wake her. When we would take her hand she would open her eyes and smile, but she was too drowsy and weak to talk very much. On the sixth day, we could not wake her. Her face was relaxed in her natural smile, she was breathing unevenly, but peacefully. We held her hands for another two hours, until she died.”

“Without hoarding pills, without making me into a criminal, without putting a bag over her head, and without huddling in a van with a carbon monoxide machine, she had found a way to bring her life gracefully to a close.” “Write about this, David. Tell others how well this worked for me. I’d like this to be my gift. Whether they are terminally ill, in intractable pain, or, like me, just knowing that the right time has come for them, more people might want to know that this way exists. And maybe more physicians will help them find it.”