Odone report on assisted suicide

New Report: Assisted Suicide - how the chattering classes have got it wrong

The Centre for Policy Studies (which is, as I understand it, a traditionally Tory-aligned think tank) has published a report by Cristina Odone putting the case against legalising assisted suicide and euthanasia, mostly on grounds that it would put elderly and disabled people in a very vulnerable position at a time when economic difficulties are leading to care budgets being cut drastically and we have an ageing population. Odone is a former editor of the Catholic Herald (1991-95) and former deputy editor of the New Statesman (1998-2004), has published two previous reports for the CPS and is the brother of Lorenzo Odone, the severely disabled boy who featured in the film, Lorenzo’s Oil (1992). Two of my friends (who have M.E., the same illness as Lynn Gilderdale who is mentioned often in this report) agreed that “religion should be left out of the euthanasia debate”, and this report does not argue on the basis of faith but of the possible consequences. The full report (as a PDF) can be found here.

One of the two friends said she couldn’t read the full report, so I’ll give a summary of it here:

• Legalisation of euthanasia would lead to pressure for it, particularly on elderly people whose care needs are a burden on relatives (or the state), and reduce their legacy. In the words of Baroness (Mary) Warnock: “Pensioners in mental decline are ‘wasting people’s lives’ because of the care they require and should be allowed to opt for euthanasia even if they are not in pain” (p.17 of PDF). Elderly people may feel morally obliged to choose euthanasia because they are a “waste of money”, requiring expensive care when that money could be used to fund a grandchild’s education, for example.
• In the Netherlands, where euthanasia has been legal since 2001, a private organisation has issued an opt-out card to prohibit any medical action intended to end their life, such is the fear of involuntary euthanasia. Campaigners there have sought to have it legalised for anybody over 70 with an “end-of-life pill” available at all pharmacies. In Oregon, euthanasia has been offered to people with treatable diseases because the ill people lack health insurance and euthanasia is much cheaper than the treatment they require.
• In light of Starmer’s recommendations on prosecution for assisting suicide, “the present law provides safeguards for the vulnerable and compassion for those who, in extremis and moved by the purest motives, help someone whose suffering has become unbearable carry out a settled wish to die.”
• Countries where euthanasia is already legal have drastically inferior standards of palliative care to the UK’s — none in the case of Oregon in the USA and the Netherlands, and very primitive in the case of Belgium. Physicians in Oregon are surprised that euthanasia is being considered in the UK, for this reason. Britain has been a pioneer in palliative care, spending £1.4m on hospice care daily, and the field has been a recognised clinical specialism since the 1980s. Death is usually not as horrific as people expect, with the right care, and stories about terrible endings from certain diseases (e.g. motor neurone disease) often refer to rare, extreme cases.
• Most doctors (two thirds) oppose legalised euthanasia, and it is likely that patients will become suspicious of any doctor who has been associated with it. In many cases, those with life-threatening illnesses also have depression which is treatable. Someone worn down by a debilitating illness (and troubled by symptoms like incontinence) may become more susceptible to “hints” that their not being there might perhaps be better for everyone.
• If Terry Pratchett’s idea of a tribunal consisting of “wise”, “upstanding” over-45s to regulate euthanasia comes into effect, it would consist of members of the educated élite making judgements on behalf of socially marginalised people, yet if conditions such as depression could go unnoticed by doctors, it is more unlikely to go unnoticed by a group of untrained “wise” people.
• Even when people make living wills (advance decisions) dictating that they would want to die in a given situation, when the situation arises, they may actually change their mind, as happened to Richard Rudd in Cambridge, who was paralysed in a motorbike accident having issued such a decision, but indicated (using only eye blinks) that he wanted to live when it actually happened.
• There is a chapter on recommendations titled “Towards a Dignified Death”, in which she recommends equipping care homes to deal with sick and dying residents rather than rushing them to hospital, improving access to respite care, and letting people know about the possibility of Advanced Care Planning (ACP), “in which health professionals discuss with patients how best to plan for their end-of-life care (including the individual’s concerns and their understanding about their illness and prognosis)”.

The point about how dangerous it is to discuss euthanasia and assisted suicide at a time when the economy is collapsing, and the likely result is a drastic reduction in care spending (despite pre-election promises of a National Care Service) which would put respite care beyond the reach of the average carer (one example given in this article from the Guardian yesterday) and exacerbate the sense of burden on both sides, and reduce the availability of suitable long-term care and the likelihood that a vulnerable, sick person might be able to find care that they would want to accept, which might be at home or in a care home of some kind (it is assumed that they would want to live at home, but some might not want to if their family situation is not suitable). The name of Lynn Gilderdale is mentioned in this report, and one factor that was mentioned in press reports of her mother’s trial was Lynn’s fear of having to move into a nursing home, having suffered terrible abuse in one hospital and poor care in several others.

It is unlikely that, by 2008, the availability of decent nursing care in the absence of her mother would have made any difference to Lynn’s decision (there is, actually, a fine hospital called Burrswood near to where Lynn lived which has a good reputation for caring for severe M.E. patients). The issue should be how people are prevented from getting to the point where Lynn was in 2007-8, which was not only that she had one of the worst ever cases of one of the most debilitating and painful illnesses known to mankind, but also that she had suffered one traumatic experience at the hands of doctors and nurses after another and, judging by some of the comments she posted on various LiveJournal forums and blogs, remembered them all too vividly and had little to distract her from both those and her intense pain, sickness and other symptoms. However, the fact that she had all this to contend with was because doctors refused to believe that her illness was real and that her symptoms were real, or that she really couldn’t breathe when she said she couldn’t (because they’d messed up her Hickman line replacement and filled her lungs with blood, as it happens), and the abusive treatment she received in hospital initially may well have contributed to her illness becoming as severe as it was, and remaining that dire for so long (one thinks of three women in particular that are well-known to the M.E. community who went down with severe M.E. around the same time as Lynn, and although they are all still severely affected, none of them have symptoms as extreme and exist in circumstances as restricted as Lynn’s).

In short, we might have fewer sick people considering this course of action if medical staff treated patients better and could expect to be brought to book for abusive or dismissive treatment of their patients. However, we must also make sure that the sick and severely disabled are not simply left alone in their pain. I remember reading of Hilary Lister, now best known for sailing solo round Britain in a breath-controlled boat but, until 2003 (when, incidentally, she was the same age as Lynn Gilderdale was in 2008), spent most of her time sitting on the sofa, unable to move and in severe pain, and seriously considering euthanasia. If it had not been for the suggestion of going to a nearby disabled sailing club (something which would not have helped Lynn Gilderdale), we might now mention Clifford Lister, her husband, in the same breath as Kay Gilderdale, and it raises the question of why someone in her position would simply be left home alone for most of each day. It has been reported that some of the quadriplegics who have committed suicide (sometimes by starvation) or had their ventilators turned off over the years have done so because of having to sit around in a “home” (or even their own home) all day, every day instead of having something to do besides think of their pain, or distressing symptoms, or what they have lost. This needs people, and money.

Odone titles chapter 2 of the report “Death as a Consumer Choice”, and includes several of the best known cases of assisted suicide over the years: Douglas Sinclair (whose friends were arrested for taking him to Switzerland), Daniel James, Lynn Gilderdale, and Edward Downes and his wife Joan. I don’t believe for a minute that it’s always regarded as such by those who consider or enter into assisted suicide; it’s often a decision that is agonised over, as was clearly the case for Lynn and Kay Gilderdale. On the other hand, there are those with degenerative conditions like MS and motor neurone disease who seem to have had their fingers on the “quit buttons” almost from the first signs of trouble, as one can see from the interviews with Debbie Purdy and Chris Woodhead in the Panorama programme featuring Kay Gilderdale that was broadcast by the BBC this past February. Worse, when the courts found in her favour, she was filmed celebrating, splashing open bottles of champagne, something I found chilling. It reminded me of something I’d read about a pro-abortion protest in Australia many years ago:

Many professional looking and smartly dressed women stood on the smooth grass. They cheered together for speakers who said abortion was just a women’s health issue, entirely up to a woman and her doctor, needed to prevent backyard jobs, something that politicians should not have any role in. “Who has any right to tell a woman what to do?”

A pro-life friend watched the protest whilst sitting on the grass under the oaks. She told me that the protesters cheered over one woman’s abortion story. This woman had a child, then two abortions, and then another child. The sound of women cheering over abortion horrified me. It is one thing to believe abortion should be a choice available for women in difficult circumstances. It is another to cheer about it.

The case of Daniel James, who had a C6/7 spinal cord injury, besides being a good example of someone with a possibly treatable depression, was an example of someone who was just coming to terms with a permanent disability was helped on his way, rather than helped to come to terms with his situation, by misguided loved ones. People may well not want to carry on when reaching a critical juncture in their lives (18 months to two years is the point at which one’s level of function after a spinal cord injury stops improving), but may change their minds some time afterwards. The same may be true of someone living with a long-term sickness or disability who suffers an emotional upset, which may or may not be related to their condition but which, at least for a time, radically changes their view on life and whether it is worth continuing, which they may reconsider a few weeks or months down the line.

Objections by religious people to legalising euthanasia or assisted suicide are often dismissed, both by the “chattering classes” derided in this report, and sometimes by advocates for some severely ill people, as the last stand of heartless fanatics and zealots. There are very compelling reasons to resist the drive towards legitimising euthanasia, given that the “next step” as shown in some places is legalising it for people much less infirm than those who, it is thought, might want to avail themselves of it now. I have even seen a letter in the Times from an old lady who stated that she was quite happy in her current abode, a nursing home, and had no wish to die, but if euthanasia were legal, she would consider herself obliged to take it up as her 19 descendents need the legacy currently being used to pay the nursing home bills. It should be remembered that in this country, we have not jailed people for assisting the suicides of very ill people who are unable to do it themselves for a long time, as long as it was actually suicide — people were getting probation in the 1980s, today they are often not prosecuted at all — so it is not as if our laws on the subject are draconian. We should not let a minority of emotionally resonant cases blind us to the possible consequences of opening up the doors any further.

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