Angelika, Barry Ashpole's Media Watch of 17 Oct 2016 has the following: The latest edition (#483) of the weekly report can now be downloaded at: http://www.ipcrc.net/archive-global-palliative-care-news.php and...

Voluntary stopping eating and drinking: Death with dignity or without?

Narrative Inquiry in Bioethics, 2016;6(2):109-113. 

Hope that's helpful. John

In my experience as a hospice registered nurse for 22years there was no request by a patient to stop either eating or taking fluids.

Generally for people with life ending diseases appetite is first to be affected in the form of non desire for food intake. Desire for fluids stays even if there is nausea. Thirst is a serious distressing sensation that only fades when terminality of life is experienced.

This is my personal experience with the countless people I nursed. I cannot back them with literature. I think personal clinical life experience is often the best teacher.

Dr Susan Bardy

Adelaide South Australia

Voluntarily stopping to eat or drink can occur during the progress of any terminal illness.  Appetite often diminishes.  Certain diseases like ALS and Alzheimer's also decrease the ability of a patient to eat or drink.  Keeping the lips wet with sponges can be helpful.  The family or friends often need help when the patient stops eating and drinking.  Stopping eating and drinking is a major transition in the dying process that takes adjustment. Eating in most cultures is not only about nourishment but also about socializing and providing and receiving comfort.  Families need to be given other options about socializing and providing comfort when a patient stops eating and drinking - reading books to the patient, gently rubbing their hands or arms, reminiscing about good memories and so on. 

More than half of those using hospice care have Eating Related Distress (ERD) at some time. ERD is a broad term used to describe the upset caused when someone cannot eat like they did before. It often causes distress for family members more than it does the person who is eating less. Please find attached a copy of a short pamphlet that is available at Mary Potter Hospice, Wellington, New Zealand, that was specifically designed to provide useful information to both patients and carers.  

Dr Martin Woods, Research Fellow, Mary Potter Hospice, Wellington, New Zealand.

Thank you all for your kind answers. Obviously, I have not formulated my question precisely enough. I am sorry for that.

 In my question about “Voluntary Stopping Eating and Drinking”, it was not about the normal decrease of interest in food and fluids and the physiological loss of appetite in dying patients.  My question referred to patients who decide to stop eating and drinking with the aim to hasten their death.

For some people this seems to be kind of an exit-strategy in situations of terminal illness and existential suffering. I am surprised that it is so difficult to find literature about this topic.  I am especially interested in the ethical aspects as well as practical experiences in caring for these patients and I would be grateful for more information about this.

Below is an extract from a chapter by me - 'From King George V to Dignitas' - in "I'll See Myself Out, Thank You", a collection of 30 essays on assisted suicide. (Skyscraper Books, 2015. Eds. C Brewer and M Irwin). It describes the case of a woman who wanted to starve herself to death and eventually succeeded.

"One day, I had an urgent phone call from [the Voluntary Euthanasia Society] to ask if I could help a woman who had been ‘sectioned’ under the Mental Health Act and was being threatened with ECT (Electro-Convulsive Treatment) against her will because she was trying to starve herself to death. I went to see her straight away. Susan was a divorcée in her early fifties and had enjoyed being a teacher until two strokes, caused by hypertension, ended both her work and her sporting hobbies, which included scuba diving. The second stroke also left her largely confined to bed and after a year or so, she decided that enough was enough. There were no financial problems, she was well looked-after in a good care home and her grown-up children visited regularly but even they could understand that life for this strong- minded and still articulate woman wasn’t much fun. They didn’t want her to die but they were prepared to support her if that was what she wanted to do. A few months previously, a psychiatrist had concluded that she wasn’t suffering from a depressive illness, just understandably fed up with life and the high probability of further strokes.

Accepting that most of the standard methods of self- deliverance – overdoses, hanging, car exhausts, shooting, drowning, even defenestration – wouldn’t be possible for her,

she decided to use the only remaining method: starvation. This requires real determination and is clearly not for the ambivalent. At first, the care-home sister and the GP were sympathetic. So, initially, was the psychiatrist summoned by the GP to rule out once more a treatable depression but at some point, everyone started to get frightened. When Susan hadn’t eaten or drunk anything for a few days, they forced her to be admitted to an NHS psychiatric ward and since she refused antidepressant drugs, they were indeed proposing to give her ECT within a day or two. I examined her in the hospital and got the family round as well. Realising that this case might become very public and that I would have to be particularly sure of my facts, I searched diligently for signs of depression but really couldn’t find any. Neither was there any evidence of a significant personality change, as sometimes happens after brain damage from strokes or other causes. Supported by the family, I said that if the hospital went ahead with ECT, the Society would use every legal and journalistic option to frustrate them. With Susan’s and the family’s permission, I told the story to John Illman, a leading medical journalist and one of my former editors, who wrote about it in the next issue of the Observer. Faced with this two-pronged attack, the hospital backed down. Provided that she took fluids and vitamins, they would allow her to starve to death on one of the medical wards. This was a rather odd compromise but better than forcing her to have ECT. Susan gained her self-deliverance eventually. Because of her acceptance of fluids under duress, it took her two months to die. Without fluids, death would have released her in a week or two at most."

PS The book also has chapters about the documented failures and limitations (as well as the many successes) of palliative care, the religious case for assisted suicide (written by a theologian) and a contribution from Belgium, where - uniquely - it was the physicians and nurses from their excellent palliative care system who recognised those limitations and campaigned successfully for medically-assisted suicide and voluntary euthanasia to be added to palliative care options. In my experience, once terminal patients know that assisted suicide is an option for them, they feel much better for having that reassurance. If their palliative care is effective, they are happy to use it and fewer than 20% of cancer patients actually go to Switzerland. Though perhaps more would go if it weren't such a hassle, especially if wheelchairs or other special equipment have to be taken on the journey.

Hello again Angelika,

I now understand your interest in patients who decide to stop eating and drinking with the aim to hasten their death. This issue emerged in this country a few years ago in what was to become a (in)famous case. At the time, it produced a great deal of national debate involving euthanasia supporters, legal experts and the Catholic Church to name but three. 

Please see: 

http://www.stuff.co.nz/the-press/news/3532462/Margaret-Page-dies-in-rest-home-after-16-days

...for a short item about the case; other news items about it are available.

Dr Martin Woods

Thanks for the reference, Martin. I visited the Mary Potter hospice when in Wellington a couple of years ago and was impressed with the atmosphere and the staff. However, in addition to the gradual increase in countries allowing assisted dying/medically-assisted rational suicide, the Margaret Page case - very like the one I described - reinforces the point that even the best hospice care is simply not appropriate, not wanted or wanted only for the early part of the dying process by significant numbers of patients. It also shows that my guesstimate of around two weeks to die if fluids are refused is about right, though presumably it would take less time in a hotter environment or if there was additional fluid loss through diarrhoea, peritoneal or pleural effusions, or vomiting.  I suspect that more people would choose that method of accelerated dying if they knew that once the symptoms of dehydration started to bite and they had said their last farewells, they would be given terminal sedation. An easy research project for some keen young PhD or medic but not likely to commend itself to hospices with a religious ethos who deep down - and sometimes not very deep down - believe with St Augustine (and Dame Cicely Saunders) that suicide is a worse sin than homicide.

The Church of England has only this year voted to change Canon Law so that suicides who are not judged to be of unsound mind can receive a Christian burial in consecrated ground after a Christian service. The Vatican still officially denies them those last rites and gets round it by the excuse of insisting that the Margaret Pages of this world are all suffering from severe mental illnesses. Until 1825, the Church of England showed its sympathy to the families of unexcused suicides by requiring that the unconsecrated burials took place  at a crossroads. Until 1890, it preferred the burials to take place furtively between 9pm and midnight. I suppose we should see that as progress.