In 2005, the NZ Herald reported. “A man with motor neurone disease plans to starve himself to death rather than wait to die.
“Thirty-nine-year-old Andrew Morris of Hamilton has limited movement and can barely speak. He has gone public with his decision because he wants law changes to allow voluntary euthanasia.”
Such cases occur not infrequently, around the world. Last month, John Rehm took his life by dehydration. NBC News reported:
Diane Rehm and her husband John had been married for 54 years when he knew he didn’t want to live another day.
His Parkinson’s disease had become unbearable. “He just kept getting weaker,” the NPR host told NBC News. “We called in the doctor and John said to him: ‘I am ready today.’ He said ‘I can no longer use my legs, I can no longer use my arms, I can no longer feed myself.’ And knowing with Parkinson’s it is going to get worse rather than better, he said ‘I wanted to die.’” He asked the doctor for help.
The answer they got surprised and disappointed both of them. “The doctor said ‘I cannot do that legally, morally or ethically’,” Rehm said. “He said ‘I don’t disagree with your wish that you could die with the help of a physician but I cannot do it in the state of Maryland.’”
John Rehm had to deliberately die by dehydration. It took nine days.
“John said he felt betrayed,” Rehm said. He said, ‘I felt that when the time came, you would be able to help me.’”
In a recent, short commentary on the sad case of Tony Nicklinson, I argued that two basic moral rights effectively equate to a legal right to slow assisted dying. In one sense, Rhem’s doctor was wrong.
Firstly, everyone, including Mr Hamilton, has a basic right to control what goes into their bodies, including food and fluids. Everyone has a basic right to refuse to eat and drink, even if this results in their death.
Secondly, everyone has a basic right to health care, including the relief of pain and suffering. As someone is dying, they have a right to palliative care to achieve that end. This includes the administration of narcotics and sedatives, as necessary to relieve their suffering and as requested by the patient. This is so, regardless of whether their suffering is self-inflicted or not.
It would be immoral and illegal to force feed Mr Hamilton, should he lose consciousness or the ability to resist in some way, provided his decision to refuse food and fluids was made when he was competent and knowing the consequences of his actions, without coercion from others.
But he also has the right to request and receive the fruits of medicine and science – medicine to allow him to die as he wishes, provided that medicine is not given with the intention of shortening his life. A person not taking fluids will die within a period of roughly one to two weeks. Provided pain relieving medicines do not substantially intentionally shorten life, they can be provided. “Assistance” in the form of relief of suffering is arguably already legal.
In principle, Mr Hamilton could be made unconscious during this dying phase, provided medication did not substantially shorten life. This would be kind of slow assisted dying.
We urgently need legal clarification of whether such slow assisted dying is already legal. It is certainly ethical.
If it is, then people have the moral and legal right to what I have called Voluntary Palliated Starvation.
Lord Falconer’s Assisted Dying Bill, described as “A Bill To enable competent adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes”, received its second reading in the House of Lords and has now passed to Committee Stage. After a third and final reading it will pass to the House of Commons who will make the final decision.
But if it is legal to render people like Mr Rhem unconscious for 9 days while they die of dehydration at their request, why shouldn’t it be legal to render someone unconscious for 9 mins, or 9 seconds, while they die at their request? If slow dying through refusal of food and fluids supported by palliative care is already legal, why not legalise fast assisted dying, as Lord Falconer proposes?
Hi Julian,
I think in England and Wales what you call Voluntary Palliative Starvation (VPS) is lawful, and there is a case, Re E (Medical Treatment Anorexia) [2012] EWHC 1639 (COP)* in which something quite close to VPS was provided before Court of Protection proceedings were initiated (in which E was found to lack capacity to refuse life prolonging treatment, and it was ruled that force-feeding was in her best interests):
Had E been found to have capacity (and the finding of incapacity was perhaps marginal), she would have remained on a palliative care regime until her death. I would argue that this implicitly recognises the legality of VPS.
Individuals in England and Wales have a right to 1) refuse food and fluids, provided that decision is legally valid. However, English Law doesn’t give patients a right to 2) palliative care to relieve the suffering caused by 1). The Court of Appeal in R (Burke) v GMC ([2005] EWCA Civ 1003) held:
So I think the best that a patient intending to refuse food and fluids could hope for is a sympathetic doctor who is willing to provide symptom control, because he or she believes it is in the patient’s best interests. There is no legal right to palliative care if a particular medical practitioner is unwilling to provide it (although the situation on an institutional level is complex and unresolved).
I think a lot of doctors would be uneasy about providing palliative care to a patient who was starving him- or herself to death because of the commonly held (but false) belief that opioids and sedatives hasten death. In a review of studies on opioid (17) and sedative (17) use at the end of life, Sykes and Thorns concluded that it is ‘a myth that satisfactory symptom control at the end of life is inevitably associated with hastening death’.*** So in order for VPS to be widely adopted in practice, doctors would have to be better informed about the effects of sedatives at the end of life.
One other thing that might encourage doctors to participate in VPS (and make it safer) is to have a proportional sedation requirement, rather than have the patient rendered unconscious as a matter of course. A proportional sedation requirement would see the patient’s level of sedation increased according to his level of suffering, if need be until unconsciousness were induced. This would reflect palliative care best practice. It might help doctors avoid the feeling that they had killed the patient. And it would reduce the risk of accidental killings when respiratory depression occurs after too much sedative is given in order to achieve unconsciousness.
* http://www.bailii.org/ew/cases/EWHC/COP/2012/1639.html
** http://www.bailii.org/ew/cases/EWCA/Civ/2005/1003.html
*** Nigel Sykes and Andrew Thorns, ‘The use of opioids and sedatives at the end of life’ (2003) 4(5) The Lancet Oncology 312.
Thanks Isra. That is a very helpful elaboration. You are right that patients do not have the right to demand treatment. However, if VPS were legal, there is an argument that those who conscientiously object to providing palliative care should refer on to those who are willing. As you say, how useful this is will depend on the willingness of the willing. I hope by promoting this we can find a few champions of the cause and people can die – albeit slowly – they way they wish, given the current legal constraints.
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