It is heartless not to assist people to die: Debbie Purdy
31 December 2014
The multiple sclerosis sufferer Debbie Purdy died in the Marie Curie hospice in Bradford on December 23 2014. Having been denied her right to travel to Dignitas in Switzerland, which would have exposed her husband to the risk of prosecution under the 1961 Suicide Act, she took the only option available to her – refusing food. Death by starvation is not pleasant. The relevant Wikipedia entry describes some of the symptoms:
The body breaks down its own muscles and other tissues in order to keep vital systems such as the nervous system and the heart muscle functioning.
… Early symptoms include impulsivity, irritability, hyperactivity, and other symptoms. Atrophy (wasting away) of the stomach weakens the perception of hunger, since the perception is controlled by the percentage of the stomach that is empty. Victims of starvation are often too weak to sense thirst, and therefore become dehydrated.All movements become painful due to muscle atrophy and dry, cracked skin that is caused by severe dehydration. With a weakened body, diseases are commonplace. Fungi, for example, often grow under the esophagus, making swallowing painful.
I apologise for introducing such a gloomy subject into the dying embers of 2014, but it is too important to pass by.
The American physician has discussed at length what he calls the “failed medical experiment” of preserving and extending life at all costs in his fascinating and humane book, followed by his Reith Lecture delivered on 9 December “The Problem of Hubris” (available on podcast). When questioned after this lecture by the President of Dignity in Dying about why doctors have been so slow to push for change in the law on assisted dying, when it is often the settled wish of competent people, Gawande responded thus:
When suffering is so great that we have no means to stop it and prevent it, and it’s unavoidable suffering, I do think we have means that are effective and can be carefully targeted to only those that are falling in that situation to allow them to have a prescription that would hasten their death [as he did with his own father, himself a surgeon]. We have several states in the United States where it is legal now … I think often just knowing that that option is there is relief enough, in case the suffering becomes that terrible.
But surely, as his questioner pointed out, the decision needs to be that of the patient, not the doctor, for obvious reasons – we cannot prevent ourselves falling into the hands of a religious or anyway generally pro-life medic. Gawande’s father was lucky because of his own and his son’s status in the world of medicine.
Nobody in the lecture hall disagreed with Gawande. As Simon Jenkins points out in his Guardian column, we should mark Purdy’s death by legalising assisted dying.
That two terminally ill people a month go to Switzerland to end their lives and 10 times that number kill themselves surreptitiously at home is a poor comment on modern Britain. It puts the country on a par with American creationism and Irish anti-abortionism.
…Indeed, objection is largely confined to religious prejudice and medical authoritarianism, to those who hold that the state and the professions should hold sway over individual freedom and dignity.
Apparently, Purdy’s husband thanked the Marie Curie hospice in Bradford for helping his wife through what Jenkins calls “the awful experience of self-starvation forced on her by parliament.”
How much better if he were now able to thank parliament for relieving others of having to face the same ordeal.
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Related reading:
- Supreme Court rejects right to die appeals
- “No precedent”? Then set one! The Nicklinson right to die case
- Proposal for a “Dignitas” style clinic in Fiji for Australian, New Zealand and Indian citizens
- Locked-in sufferer’s challenge to ban on voluntary euthanasia fails in the High Court
- British Columbia Supreme Court grasps the nettle in right to die case
- A step closer to the legalisation of assisted suicide?
- What is a life worth living? Further analysis of “M” – Daniel Sokol
- States Not Obliged to Assist Persons Wishing to Commit Suicide – Antoine Buyse
- GMC to announce policy of striking off doctors who prolong the lives of terminally ill patients against their wishes [updated]
- New assisted suicide guidance “focused on motivation of the suspect rather than characteristics of the victim” – DPP [updated]
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I too am sorry to learn of the uncomfortable and regrettable death of Debbie Purdy.
She chose to die in this country because she would have potentially embroiled her husband in criminal legal action if he – or anyone else – had assisted her to travel to Switzerland.
Ultimately, having the legal right to determine one’s own life must come soon.
We are none of us property of the state nor are we slaves to religious beliefs.
We should be allowed to make our own decisions as to whether or not we want palliative care or not. We should be allowed to refuse it if we choose and opt instead for a pain-free end to our own lives if that is what we want.
Individual autonomy, freedom and true independence are what is at stake here.
We none of us need or want the forces of a fascistic state or a totalitarian religion telling us what we may or may not do with our own lives.
Those institutions – and their toadying supporters – need to butt out of our lives.
Thank you, Rosalind, for keeping public attention on this issue.
Hopefully, a change of government will see positive developments in this area taking place.
With all best wishes for a happy new year to you and all your subscribers.
@ John
“having the legal right to determine one’s own life must come soon”
Suicide was decriminalised in the UK in The Suicide Act 1961. It is killing somebody else that nobody has the right to do, unless (since 1967) the victim is very young.
“We none of us need or want the forces of a fascistic state or a totalitarian religion telling us what we may or may not do with our own lives.”
But that really isn’t the situation under discussion, is it?
There is also other people that have to be considered, those that care ,love and are very close to the person that is ill. I looked after my best friend for 14 years, and she died at the age of 34. It is so hard watching the person that you care for suffer in ways you will never understand. Watching them slowly loose a little bit of themselves due to pain and the constant taking of very strong drugs. Until you have been in that situation, try not to judge. To stop taken food would not of been an easy choice for Debbie to make, as she would of read up on all the symptoms this was going to cause, and to leave her husband who she loved must of been heart breaking, it takes a mentally strong person to do what she did.
I am a priest, a Disabilities Advisor and disabled. The latter is through chronic pain which only increases with age; it has stolen my chosen career, and leaves me often broken and unable to do anything. As an academic lawyer I still worry that without the full force of parliament any bill that creeps through loop holes may exist that the vulnerable can fall pray too. I also believe we need to be clear when we talk about people who request medication that will relieve pain but will shorten life, and those who want to shorten their life because they fear other forms of disability; for as a society we are poor at talking about disability, and we are also poor at facing up to the real consequences of the day to day reality of what certain disabilities can mean to people.
As a priest I will engage in the reality of life, not blinkered like many. For if medication can relive pain and suffering then perhaps it is right to be used to relive and cure the devastation visiting a terminally ill patient. But this must be based finally on a medical decision where there is no other route left, and pain and suffering is all that is left for that patient. My understanding of Christ is that he would cure such pain, maybe this is one such avenue of cure, to be reunited with Him?
Please be aware that due to Aphasia my spelling and grammar is not always correct
According to this link the death was “natural causes” // due to the MS. Very sad though and, whilst the law itself remains on the statute book, individuals can check the DPP guidance if they are concerned.
http://www.thetelegraphandargus.co.uk/news/11692595.VIDEO__Assisted_suicide_campaigner_dies_after_refusing_food/
Thanks for highlighting the issue of assisted dying in this blog but I don’t think it is correct to say Debbie Purdy was “denied her right to travel to Dignitas in Switzerland”. It is my understanding that Debbie rejected the option of travelling abroad to die, and instead, wanting to die in this country, chose to hasten her death by stopping eating.
Explained further here http://www.dignityindying.org.uk/blog/assisted-dying-campaigner-debbie-purdy-died-aged-51-4th-may-1963-23rd-december-2014/
As for changing the law, I agree with the severely disabled Baroness Campbell(?) who put this in context: With any knowledge of the practice of care in homes and NHS in the UK, the pressure on people to die would be increasing and the quality of care getting even worse (already more than bordering negligence as devaluing the life of those suffering/seemingly unconscious. To relieve suffering in a true and humane way, there is already the possibility of advance directions in place and the possibility for Clinicians to increase pain medication.
How awful that someone should be forced to starve themselves to death because the law would prosecute anyone assisting someone with a terminal illness to die. Why then is there no effective protection for sentient patients who don’t want to die being forcibly starved to death on the NHS? The police won’t respond in such a circumstance because they say it’s out of their remit – I know, I’ve tried. And if you are only a friend and the close family member of the victim is too intimidated to challenge medical authority, there is precious little you can do in practice.
Video of a man rendered unable to eat by unnecessary medical treatment, being bludgeoned into submission with morphine and then being starved to death on the NHS coming shortly.
I am afraid that assisted suicide is murder.
You raise the same points as I raised myself, at the beginning of April last year, in my blog post entitled, “Today’s EU Directive on Euthanasia”, q.v. at
http://johnallmanuk.wordpress.com/2014/04/01/euthanasia/
Rosalind,
New Year’s Eve: a good time to post this.
Time to think about the past year, those who have died and our own mortality.
Debbie Purdy was an exceptionally brave person and deserved better treatment than she was forced to suffer.
No cheap shots about human rights; just sadness, sympathy and the wish that no one I love ever has to go through the same process.
Thank you for this. The combination of Gawande’s book and letters, and Debbie Purdy’s brave campaign I thought needed an acknowledgement, in the hope that 2015 may bring more courageous parliamentary pressure on this issue.
Objections to legalization of ‘assisted dying’ may at present be “largely confined” to what Simon Jenkins disparages as “religious prejudice and medical authoritarianism”. But there are other grave objections, other grounds.
Laws permitting (and subtly encouraging) the medicalized killing of suicidal persons who are terminally ill may alter most unjustly our present social environment in which the terminally ill are entitled unconditionally to whatever palliative care, financial and other resources are necessary.
(The alternative to legal medicalized killing is not as this article appears to imply “preserving and extending life at all costs” but competent palliative care which is itself a benign form of ‘assisted dying’ which does not press onto the dying any form of coercion to preserve and extend life but rather provides sensitive attentiveness to their needs to the moment of natural death. While every person has a right to refuse burdensome medical intervention intended to prolong life, no person has a right to demand of carers a medical intervention intended to kill.)
Social environmental economists might recognize in the making here a tragedy of the commons. Legalized medical killing of the terminally ill sets a socially engineered trap, in which individual interests freely and legally gain access to a public resource (a health care system that provides unconditional specialized care for the terminally ill) and proceed to change drastically the ethos of that public resource—to change it from unconditional palliative care to optional care together with the option of medically assisted suicide.
A tragedy of the commons may unfold as the terminally ill are pressured subtly to accept the cheaper swifter option. This will lead eventually to the complete depletion of the shared resource—the end of a truly universal, unconditional and beneficent system of care for the terminally ill. A gradual reduction of specialized clinics, hospices, palliative care resources and research dedicated to the needs of the terminally ill is therefore a typical “externality” – i.e., the unintended and negative consequence of private decisions that ends up affecting everyone.
Inexorably, more research resources, more clinics, more medical personnel will be directed towards ktenology—the science of killing.
We should not venture down that road.
Odd – had she signed an advance directive refusing food, fluids and asking to have her symptoms relieved ”even if this shortens my life’, ,she could have been totally unconcious and died in under 24 hours. Tony Nicklinson died in under 36 hours on it and was completely unconcious throughout (unless he had appalling medical care, which I doubt).
Seems to have been contrived to win a court case …what a shame so many people who wanted to live were killed in this way with absolutely zero information or consent…..
So, are you saying that it was not wanting to miss the judgment in his court case about the right to die, that conferred upon Mr Nicklinson the will to live? That his desire not to die before he had discovered whether he had won or lost in court, persuaded him to persuade others to keep him alive artificially, and in pain, until he knew how the plot of the legal drama in which he starred, playing himself, finished?
People with an agenda to change the law have to contrive to *lose* court cases, not to win them though. If they win, they prove that the law was hunky dory all along (despite nervousness), and therefore doesn’t need changing. In agit-prop, winning is losing, and losing is winning.
If we have assisted dying, there will probably be a conscience clauses to protect conscientious objectors, who know what murder looks like when they see it and want no part in it. Judging by a recent Supreme Court judgment about some midwives in Edinburgh, almost fifty years after that, some van driver will be accused of seeking special privileges because he disapproves of deliberate killing, and told to find himself a none-driving job, because his employer has the contract to deliver the Cyclon B to the extermination facility, and can’t put up with his employees picking and choosing which of their “duties” they perform, and which of those duties offend their consciences.
What Parliament intends today doesn’t matter. It’s what a bunch of over-promoted degenerates in wigs – “the construction industry”, as I call them – pretend to think, in 50 years time, that Parliament meant today, the complete opposite of what Parliament said in writing.
Somebody remarked that those who wanted fox hunting banned, were less concerned with the fox’s pain, than with the hunters’ pleasure. In much the same way, the greater aspiration of the assisted dying lobby could well be that health professionals who don’t yet routinely bump their patients off discreetly and get away it, are getting away with having clear consciences, something that these kinds of people find intolerable. Mark my words, *everybody* they need to have participate will eventually find themselves participating, or out of a job.
“Religion” will be blamed again, as though anybody needed “religion” to tell them not to kill unwell adults, any more than they need religion to tell them not to kill perfectly healthy foetuses today, delilberately, for the sake of killing.
On this subject I send personal gratitude. With huge thanks to you all for so much enlightening over the last year. With huge congratulations for your achievement in readership. With huge best wishes for the coming year and onwards. tara x
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