Savi Hensman

Neglect of sick people and the assisted dying debate

By Savi Hensman
August 16, 2015

Debate over assisted dying has become more intense, as the UK parliament prepares to discuss a bill to make this legal. Meanwhile many face suffering which could, and should, be prevented under existing law. This poses an ethical challenge to those on both sides.

Calls for change

The death of a campaigner for change, Bob Cole, who travelled to the Dignitas clinic in Switzerland, received wide publicity. So did a letter from several faith leaders arguing that assisted suicide was not morally wrong, despite the official stance of many faith groups.

Lord Carey, a former Archbishop of Canterbury, Alan Wilson, the Anglican Bishop of Buckingham, and Baroness Richardson, the President of the Methodist Conference, were among those who signed. Rabbis Danny Rich and Jonathan Romain also backed calls for legalising physician-assisted suicide.

“We value life as a precious gift of God, but also uphold the right of individuals who are approaching their last few months to gracefully hand back that gift if they feel the quality of their life is about to deteriorate beyond the point at which they want to continue”, the signatories wrote.

“There is nothing sacred about suffering, nothing holy about agony, and individuals should not be obliged to endure it.” Many, religious or otherwise, would agree, and the cause has strong public support.

But this raises serious questions. Numerous terminally ill and disabled people are being forced to endure suffering that could be prevented under the law as it stands. Indeed, it could be argued that failure to relieve this is unlawful. But it goes on all the same.

Allowing preventable suffering: survey findings

The findings of the annual National Survey of Bereaved People do not get nearly as much attention as reports on individuals who want to die with doctors’ help. Yet they reveal a deeply troubling reality.

In the opinion of close relatives, in 2014 the pain of loved ones cared for in hospices during the last three months of their lives was relieved completely all of the time for 63 per cent of patients, and some of the time for another 24 per cent.

But this was not as high in care homes, and was worse still in hospitals. Worst of all, at home a mere 18 per cent had their pain relieved completely all the time (less than a third of the proportion in hospices), and another 31 per cent some of the time. About eight per cent appeared not to have had their pain relieved at all.

It seems that because of society’s failure to provide adequate specialist palliative care and other nursing and assistance to people with life-threatening illnesses, thousands suffer unnecessary pain every year.

The picture is also disturbing with regard to other aspects of care. Among patients cared for by hospice staff, 88 per cent were reportedly treated with dignity and respect all the time by hospice doctors and 85 per cent in the case of hospice nurses. This fell to 59 per cent of hospital doctors and 53 per cent of hospital nurses.

Anyone who has observed how badly understaffed wards can be, or read the results of the NHS staff surveys, will probably not be surprised. In practice, this may mean that patients wait for help with basics such as going to the toilet and being cleaned afterwards.

Care of people who are dying or have long-term needs has long tended to be less well-resourced than more ‘glamorous’ forms of medicine. Amidst deep health and social care cuts, matters are getting worse.

Though there are reputable private contractors, privatisation has in some cases led to further deterioration of quality and lack of accountability. This is likely to increase. Meanwhile, rich and large corporations have benefited from lavish tax cuts and commercial opportunities.

Losing independence

For some people in favour of assisted dying, their greatest fear is being incapacitated and losing their independence. In practice, many disabled people with major impairments and in poor health enjoy a reasonable quality of life, when given proper support.

Personal assistants, adaptations and equipment have enabled many people to participate in their communities and to have considerable control over their lives. This may seem odd to some non-disabled people, who may assume that those with physical or mental impairments inevitably lose their ‘independence’.

But in the modern world, most of us are interdependent. From the moment we sip a morning cup of tea or coffee that someone else has grown, ground and shipped, till we go to bed, we rely on others and they on us.

Social services departments are required to make sure that people get the support they need to meet basic needs, including being able to participate in communities. However the wellbeing of disabled people who are unable to pay for their own care is often not much of a priority for local or national politicians. Deep cuts and rising need have made matters worse.

An Independent Living Fund which helped many people to employ personal assistants, get out and about and lead ordinary lives, has just been abolished. Follow-up arrangements in much of Britain are hopelessly inadequate. Many former recipients may indeed now feel trapped and helpless, as if life is not worth living. If they have a potentially fatal health condition, this may tip them over the edge.

Society’s choices

Some opponents of assisted dying fear that sick people might sometimes be pressured into wanting to die by greedy or abusive relatives, while supporters tend to insist this would seldom if ever happen.

Be that as it may, it is clear that physical and emotional suffering is already being inflicted on numerous people in their last few months, as a matter of public policy. This is scandalous. For the state to offer speedy death to those classified as likely to die anyway within six months is hardly an adequate alternative.

The major disabled people’s organisations in the UK generally oppose the bill, as do the British Medical Association, the Association for Palliative Medicine and the British Geriatric Society. The NHS “is currently understaffed and under resourced. Against a backdrop of longer shifts, difficulty in obtaining appointments and the rationing of certain treatments, should we really be pushing further pressures onto our reluctant doctors?” wrote actor and disability activist Liz Carr on the ITV website.

“The Assisted Dying Bill would establish medically assisted suicide as an acceptable and even expected societal response to pain, disability, life limiting conditions and terminal illness. This is to ignore the social factors, such as poverty and lack of social care that can also create suffering in people’s lives.

“Denied the support to live – or die – with dignity, is it any surprise that people feel they have no choice but to end their lives? What terminally ill and disabled people need is an Assisted Living not an Assisted Dying Bill.”

An ethical challenge to those on both sides

In fact, the existing legal framework for health and social care, backed up by that for equality and human rights, requires action to reduce avoidable suffering. It is not however, being adequately put into practice and people are ending their days in preventable agony, squalor and helplessness.

Some people in favour of physician-assisted suicide (or even voluntary euthanasia, on which Parliament will not be voting at this time) might believe this is not enough. Opponents may disagree. Certainly, patients fed up with procedures which they feel pointlessly prolong their suffering are rightly entitled to refuse further treatment other than palliative care, and it is important that this be respected.

However, whether people are for or against changing the law, if they really care about easing suffering and preserving dignity, they should campaign for people with life-threatening conditions to get proper support.

Otherwise a state which has subjected some of its most vulnerable citizens to cruelty, degradation or the withdrawal of much of what makes life worth living will offer some of these just one way out – hastening of death. This is unjust and unacceptable.

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© Savitri Hensman is a widely-published Christian commentator of politics, religion, welfare and allied topics. An Ekklesia associate, she works in the care and equalities sector.

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