“They” said it would be easy! Choose your experts carefully…

"I stopped taking any nutrition a week ago. It was
the only choice I saw to end my life, the only
thing I can control. The literature I read said
it wouldn't be hard, and it isn't -- it's brutal.
My loved ones support me, but this is as difficult
on them to watch as it is for me to execute.

The experts told Charles Selsberg that refusal of food and liquid as a means of ending his life would not be painful. They were wrong. “But I know someone who did it and they died very peacefully,” you say. Indeed. But it is a method with many factors and what works for one person will not necessary work for someone else. Be very careful which experts you listen to and which literature you trust.

Starvation/dehydration is such a complex subject that The Exit Path spends no less than 50 pages examining and analysing the evidence and presenting guidelines based on collating data from more than 100 published sources from academic studies and the mainstream press. Yet each month we hear of some well-meaning source suggesting that it is ‘painless’ or that it is the ‘ideal’ way to go; and the same month we hear of another prolonged and painful death where someone took that advice at face value. In this short article, it is only possible to give the briefest of outlines, but we say, don’t take our word for it, look at the evidence.

How is what we tell different to the advice from other sources, some of them eminent doctors or even some right-to-die groups? The answer is metadata. We don’t just look at a few examples and add on some convenient theory. We search and search again, paying particular attention to failures and their causes. We look at the medical hypotheses and see if they stand up to the most difficult examples. We are probably one of the very few organisations that can devote full-time investigation to get to the bottom of controversial self-deliverance issues. We ask other experts to criticise our findings just as we criticise our own. When it comes to someone’s life and death, we think they deserve more than a belief, a ‘wish-and-a-prayer.’

So what are the basics on starvation-dehydration as a means of self-deliverance?

1. Firstly, you need to be in the category of persons for whom it is possible (but not inevitable) that it will work well in ensuring a peaceful and painless death.

2. If that is satisfied, you need to prepare. Once you have embarked on your terminal fast, it is too late to put the necessary things in place.

3. You need to be familiar with the probable course of your terminal fast, what to expect, the potential obstacles that may require urgent attention.

4. Your friends and family need to be aware also, how your appearance will change and your physical capacities become less. You will need to know how you can exert some control over your progress to interact with them.

5. You need the willing back-up of a medical person able to prescribe such (legal) drugs as may become necessary to relieve symptoms that arise, as well as some basic day-to day nursing care.

6. The process is voluntary. In theory, you can stop at any time; but there is also a point of no return. Calling it, “voluntary refusal of food and liquids” is a fuller way of describing it to cover the moral issues. There must be no question of relatives or carers refusing liquids or nourishment. “Starvation-dehydration” simply identifies the physical process causing death.

Let’s not beat about the bush: there are many people who die peacefully by this method and many that don’t. Tony Nicklinson (see previous blog) was severely debilitated. He was also in touch with many sympathetic doctors. Charles Selsberg was less fortunate.

Many terminally-ill cancer patients experience a bodily “shut down” and no longer feel a desire for food or drink. Many of them also have excellent hospice care to manage any conditions that arise. Many of the studies on death by starvation-dehydration have been in similarly well-managed clinical settings. Yet Jane Gross’s mother, paralysed and desperate to die, had medical back-up in her nursing home and still suffered. “The first three days were so-so,” says her daughter, adding that, on a scale of 0 to 9 where 9 is “a very good death” her mother’s condition would have been a 6. “The last three days were peaceful, an undisputed 9. It was the week in the middle that was harrowing, at best a 3.”

Finally they got an outside pain consultant to persuade the staff physicians that they could raise the dosage without risking legal liability. “Only then did my mother stop pumping one arm frantically, clenching her jaw and staring wide-eyed at the ceiling.”

Excited by the findings of a Dutch psychiatrist, one right-to-die group led by a doctor had even started recommending refusal-of-food-and-liquid as the best way to go, failing a change in the law. Horrific newspaper reports of bad deaths followed, and the group quickly played down their advice.

Factors that can eliminate (or severely increase the difficulty) of patients from point (1) include being overweight or having a pre-existing condition that increases the likelihood of organ failure. Nursing needs can include care of the mouth so that it doesn’t dry out completely (and painfully), bed turning to prevent sores, and general observation to anticipate medical needs. Medical needs commonly occurring are the need for ordinary prescription drugs to control things like sleeplessness, anxiety, occasional breathlessness and pain. Emotional needs should be thoroughly addressed by full and open advance discussions. Advance equipment might include a nebulizer or hand-held atomizer, saliva-replacement gel, eye-gel (or ‘artificial tears’) and nasal sprays, plus Vaseline or lip-balm. A soft-toothbrush for oral care, and a gauze soaked in alcohol-free chlorhexidine can be used on the gums and tongue to prevent fungal infections in the mouth.

No-one undertakes raional self-deliverance unless their suffering is unbearable. If they make that final choice, everything should be done to ensure that they do not unwittingly bring even more suffering on themselves.

Exit received an award from the Natural Death Centre in 1996 for its ground-breaking study of death from refusing food and liquids. It has continued to research and publish in this area for almost 20 years.