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Sunday, 11 October 2009

Getting arguments out of frustrating grooves

There are a range of issue, particularly those surrounding the beginning and end of life that seem to be stuck in predictable grooves. When the issue hits the media you can generally tell how the argument will be advanced. There is little evidence of fresh thinking and little respect for those whose views differ.

Savi Hensman has some interesting observations on this particularly with respect to end of life issues. In Care and Control at Life's End she observes about the recent debate about assisted suicide that ...
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.

The issue she points out is one of resources.

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.

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.

After all she points out, 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. 

That this is the experience of significant numbers of people is an indication that the less glamorous aspects of care do not attract the same attention as high tech research driven breakthroughs in "curative" medicine. Technology offers the appeal that there are "solutions" to all our "problems".  Caring for those who are close to death is demanding because it can remind us of our own mortality. It requires dealing gently and carefully with the body, offering the low tech but time intensive care of touch and presence. I remember with gratitude the patient care of my father during his last days of life by the nursing staff.

As Hensman observes ...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.

An approach along these lines, focusing on issues of resources for caring where technical interventions are not relevant would not do away with the debate about assisted death. It might however focus our attention on some action that reflects areas of overlapping concern about the human rights and dignity of those who are among the more vulnerable and practically underpin the community fof family and friends who surround them.

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