Care and control at life's end

Savi Hensman
By Savi Hensman
5 Oct 2009

There has been much debate recently in England and Wales about assisted suicide. Though helping someone to die remains a crime, people who accompany a relative to a clinic abroad where lives are ended are not usually prosecuted.

In September 2009, the Director of Public Prosecutions issued draft guidance for consultation on how such decisions are made. There are other parts of the world in which physician-assisted suicide is legal if the person concerned is terminally ill, of sound mind and clearly wants to hasten their death.

Some, such as the campaign group Dignity in Dying (formerly known as the Voluntary Euthanasia Society) want to go further. Others are strongly opposed to any acceptance of assisted dying, including Care not Killing, an alliance which includes doctors specialising in palliative care, disability organisations and faith groups.

“The law against assisted suicide gives expression to a profound moral intuition about the value of every human life. It exists to protect vulnerable people, and any weakening of that legal protection would carry with it great dangers,” stated Archbishop Peter Smith on behalf of the Catholic Bishops’ Conference of England and Wales.

Similarly the Bishop of Exeter, Michael Langrish, declared that "The Church of England has consistently argued - and Parliament has consistently voted - against any change in the law governing assisted suicide, even when this is motivated by compassion.”

There are strong arguments on both sides, though my own view is that it would probably do more harm than good to change the law to permit voluntary euthanasia. However I find it disappointing that so many people who are passionate about this matter (whether for or against legalisation) do not seem nearly as concerned to tackle the violations of dignity which can be prevented at present.

There are exceptions, including disability groups and those who have championed better palliative care. Yet many of those who argue forcefully on this matter seem either fatalistic about, or simply unaware of, the failures in care and respect which can make dying even harder than it needs to be.

Many people who are very sick and frail can nevertheless exercise considerable control over their environment if adequate assistance is available. Yet even the most basic support to individuals and families may be lacking or inconsistent and negative social attitudes (sometimes linked to prejudice on grounds of age and disability) may add to the distress that many experience.

A report by the Patients Association published in August, described instances of very poor nursing and personal care experienced by some patients in National Health Service hospitals. Though most patients have generally positive experiences of inpatient care, a number get inadequate medical attention including pain relief, or are left hungry, thirsty or in soiled clothing for far too long and if they do not have visitors they may have few chances for conversation or companionship.

Such problems are not unique to publicly-funded healthcare, the health sector, (social care can also be very poor) or indeed to the UK. In care homes and people’s own homes, care organised by social services or the NHS may be less than adequate, if it is available at all. Relatives and friends may be pressured into doing more than they are easily able and willing to do and it can be disempowering to those nearing the ends of their lives, as well as sometimes putting a strain on relationships.

Though the media has focused on bad attitudes on the part of some staff, many of the shortcomings are rooted in the system and linked to lack of resources or how these are used. As the Patients Association report Patients... not numbers, People... not statistics points out, “We need urgently to reconsider the resources made available to hospitals and how they are spent. We need urgently to reconsider how hospitals are regulated and supervised. The public need to have confidence that the ward they will be admitted to will have enough staff with the right experience and training. The results of inpatient surveys and patient complaints should be scrutinised rigorously and followed up fearlessly.”

Earlier in 2009, a survey of nurses and midwives in NHS hospitals, commissioned by Dispatches (a current affairs programme on Channel 4 television) found that 70 per cent believed that understaffing prevented them from doing their jobs properly. The pressure on frontline staff in many wards at busy times is highlighted by other findings and by personal accounts.

Age Concern England’s 2008 report Q is for Quality, focusing on social care, suggests that “Up and down the country, the care system is creaking at the seams. Starved of funding, and facing ever increasing demand, local authorities are making severe cuts to their services. Nearly three quarters now only provide help to those with the highest needs and the quality of the services provided is often woefully inadequate.” Careworkers tend to be poorly paid, despite the important work they do.

Experiencing unnecessary pain, discomfort, squalor or loneliness, or watching one’s relatives and friends struggling to cope and feeling responsible, are less than ideal way to spend one’s final days and time which loved ones might spend in saying goodbye and coming to terms with the situation may be swallowed up in exhaustion and anxiety. And judgement may be impaired, for instance by sleep deprivation affecting feelings and choices.

Yet in many cases, the NHS and social services, working in partnership with service users, carers and the voluntary sector, can and do offer the support which makes a crucial difference. This could be extended so that far more people who are dying, or have potentially fatal conditions, may experience a better quality of life in the time they have left. Society, in turn, may receive unexpected gifts from those who are nearing the ends of their lives but are still part of the human community.

A government consultation paper on the future of social care has been widely publicised. It proposes meeting increasing care costs largely through the state taking money from older and disabled people who have more than a bare minimum. This may improve matters in some ways but may also have negative consequences. For instance, a recently-retired person caring for a dying parent may no longer be able to afford the transport costs to visit him, or someone with a life-threatening illness cannot afford to keep her flat warm.

Various other proposals have also been put forward by politicians at party conferences. But the relatively low priority given to funding the less glamorous aspects of care is a problem.

Political leaders fear that the general public will not accept higher taxation for the wealthy, or a shift in spending priorities, even if this means they are reasonably certain that they will not go short of bare necessities and basic comforts towards the ends of their own lives. If this is true, perhaps it is because people are more reluctant to consider what it will be like to be in declining health and, in the end, to die.

Perhaps some prefer to dream of becoming rich (however unlikely this is) and protect the assets of the class they aspire to join, or take pride in their country’s military might, even if this does not benefit them and in the longer term creates a less safe world for them as well as others.

They may find it difficult to hear the first-hand accounts of the frustrations of those lacking basic care and control as they approach life’s end, and of those who love them and look on in dismay. Health and social care personnel may be ashamed that they cannot provide the service they would wish to offer.

Faith communities, humanists and others concerned with societies’ values might find it useful to explore why so many people have an unrealistic view of what it is like to be reaching the end of one’s life, or caring for someone in this position, and try to change this. And if more of the champions and opponents of assisted dying could put some of the energy they direct towards this into improving the lot of people nearing the ends of their lives who are not receiving adequate support, the situation might be transformed.

Almost certainly, even if excellent, or at least decent, care were available to all in relatively prosperous countries (and ultimately throughout the world), the assisted dying debate would continue. But it might be less heated and more grounded both in acceptance of mortality and in the refusal to accept that people nearing the end of their lives are worthless and do not deserve the same consideration and respect as others.

There would be less risk that euthanasia would be seen as a cheap alternative to potentially costly care, or a way out for those suffering intolerably because, on top of their illness, they have been deprived of their human rights. This would help to create a more just and compassionate society, where all are treasured and honoured from cradle to grave.

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(c) Savitri Hensman was born in Sri Lanka. She works in voluntary sector in health and social care and equalities in the UK, and is also a respected writer on Christianity and social justice. Savi is an Ekklesia associate.

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