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The Psychology of Death
Do not go gentle into that good night
Dylan Thomas's exhortation to his father, to fight and struggle against "the dying of the light" exemplifies the feelings many of us have about death and the process of dying -- that we should fight against it, should "rage, rage". And yet his words contrast oddly with those of Shakespeare's Calpurnia;
"Of all the wonders that I yet have heard
Certainly there can be no disputing the truth of Calpurnia's words; death will come to us all, and to many of us it will be unwelcome, to say the least. Indeed, there are those who feel that one of the most encouraging features of modern society has been its success in extending the limits of human life and the identification of those factors which contribute to longevity.
Certainly when looked at simply, we appear to be doing a good job in improving average life expectancy; at the turn of the century, mean life expectancy at birth in the US was around 46; now it is around 75. However, these figures hide an issue which is likely to be of concern to most adults -- that the improvement is largely a consequence of improvements in infant mortality.
For adults, life expectancy has improved surprisingly little, and a 40-year-old today has only a few more years of life ahead than a similar 40-year-old at the turn of the century, and the remaining life expectancy of today's 75-year-old is little changed from that of a 75-year-old of the 17th Century.
However, whilst the age at which people die may not have changed dramatically, there is no doubt that the causes of people's death have changed markedly over the years. Infectious disease accounts for only a minority of deaths today, and when pneumonia, the 'old man's friend'' strikes, it is often only the last straw for a body already ravaged by diseases like cancer. The major killers of today -- heart disease, cancer, strokes -- are typically not diseases which arrive unheralded -- even the dramatic instant heart attack so beloved of TV and film rarely arrives without warning, and most heart attacks are survived.
As far as psychology is concerned, the fact that people may have some greater or lesser degree of forewarning about their deaths raises a number of interesting and important questions, particularly with respect to the kinds of problems that might arise from such knowledge and the ways in which psychology might be of help.
Since many of us today live in a society which is moving away from paternalistic medicine, a context in which it was perhaps considered acceptable for a physician to withhold information about diagnosis and prognosis from a patient, we face the prospect of being told at some point in our lives that we have a disease which will probably be the cause of our death.
Given our general attitude towards death, it is perhaps unsurprising that people confronted with such information do indeed display a range of psychological problems, although it is worth noting that these are probably not universal and, indeed, with good care, psychological problems may often be less severe than one might expect.
The Pyschology of Terminal Care
Psychological approaches have already proved to be of considerable value in the control of both acute and chronic pain in the general medical field, and it seems likely that the lessons learned there may be of value in the field of cancer pain also.
Similarly the psychological treatment procedures that have been developed for problems of depression and anxiety, so successful in other areas, seem likely to be of benefit in terminal care as well. Perhaps most valuable, however, is the promise of psychology to be of value in understanding the experience of the dying person, of making sense of what is happening to them, of what they are feeling and how they might be helped to cope.
A major issue here is likely to be that of control; control has been highlighted as a significant factor in areas such as anxiety (where people may have their fear heightened by the prospect of experiencing a panic attack) and depression (where loss of control over one's life can lead one to "give up"). Typically people with a terminal illness are likely to experience considerable loss of control over important areas of their lives, a phenomenon against it would perhaps be wise for those of us involved in care to guard against to the greatest degree possible.
The issue is perhaps particularly important when we recognise the individuality of each person for whom we care; it can be difficult if not impossible to "second guess" a person's preferences, fears, anxieties etc., and under such circumstances, when we cannot with confidence predict what the person would want, we may be better off leaving them as far as possible making their own decisions.
Such a stance is of course, also consistent with increasing moves in medical ethics towards emphasizing patient autonomy -- although this may not always be easy.
For example, in studies of breast cancer patients, although considerable research is now available to indicate that participation in treatment decisions by patients is associated with improved psychological outcome, we also find that when asked directly how they feel about such involvement, the majority of patients prefer to devolve such treatment to the doctor.
Whilst a naive interpretation of such findings might be that women should not be offered participation, the fact that a substantial minority do wish to be involved suggests that we still have much to do in order to empower the remainder and leave them feeling able to contribute to their treatment decisions.
Taking a broad perspective, it is possible to see three clear (though not necessarily separate) ways in which psychology might contribute to the field of terminal care:
Although the most obvious areas of research are those which involve the dying people themselves, a considerable amount of valuable research in the field may also be conducted with those who are caring for dying people, and indeed with society as a whole.
Since we tend, in general, to avoid talking about death, there remain considerable areas of ignorance just about how people at large view death and dying. Yet such information may be crucial if we are to appreciate how people respond to their illnesses.
How Do You Deal with Death?
For example, in research on children aged 11-17 we found that whilst the majority of children felt that if they had a terminal illness they should be told, 50% or more would expect to be misled either by the doctors or their families. Such findings, of course, have implications not only for dying children but also for relatively healthy children whose fears about going into hospital may be exacerbated by doubts as to how much they have been told is actually true. Ironically, it does not appear to be uncommon for attempts at deceit to fall on stony ground when dealing with dying children -- as one child put it:
"I know I'm dying, but I pretend to my parents that I don't; it's the only thing I've got left I can do for them..."
An example such as this illustrates the often heart-rending nature of work in terminal care, and increasingly it is being recognised that those involved in caring for dying people may be subject to considerable stress, often resulting in burnout and the loss of highly skilled individuals who no longer feel able to remain in the field.
Stress and Social Support
Under some circumstances, such stresses can be alleviated by a good network of social support, and in many hospices and hospitals regular meetings can do much to relieve the pressures encountered.
Recent years however have seen an increasing recognition of the value of providing hospice care in the community rather than in a central location. Under such circumstances there is the risk that the consequent attenuation of social support may lead to increased impact of stressors on those concerned.
In Wales we used a combination of qualitative and quantitative research strategies to undertake a study of the experiences of ten community hospice nurses responsible for providing care over a wide rural area. Quantitative measures revealed high levels of stress, with half the nurses showing either medium or high levels of emotional exhaustion.
Interestingly when asked about the sources of stress, problems cited included those related to organizational issues and role problems relative to other professionals, and, a sad reflection on the times in which we live, issues relating to sexual harrassment and personal safety. Coping was impaired by the sense of geographical and social isolation, and problems were often severe:
"When I got there the patient died within ten minutes. He was still in the chair because he refused to go to bed. I didn't even know his name, and I'd never met his family..."
Although the identification of these kinds of problems might appear disturbing, it is perhaps one of the rewarding aspects of working in this field that so much of the research that is conducted can be drawn upon to produce rapid benefits.
In the example cited, this includes feeding of results back to the organization resulted in a number of changes, ranging from addressing of role issues and organizational problems to direct contributions such as the provision of mobile telephones to the nurses. Plans are now underway to repeat and develop the earlier study in order to identify the extent to which the changes have been associated with improvements in staff well-being.
What Dreams May Come
It is, however, the research that is directly conducted with dying people that most springs to mind when considering the field of terminal care. Such research can be illustrated by our work on the dreams of dying people.
Clinical observation has suggested that people who are approaching death may show characteristic patterns of dreaming, and examples of such dreams may indeed be compelling. One does not have to be a highly trained Freudian, for example, to recognise the symbolism of the following:
"I dreamt I was in some sort of unstable vehicle, didn't recognize it...then I found it was a plane, and I was due to parachute out without a parachute..."
However, to make the inferential leap from such observations to the conclusion that the dreams of dying people are indeed distinctive would be a bold move. AIl of us dream several times every night, and it is easy to imagine a scenario in which "distinctive" dreams were identified by dying people or their carers which would be ignored if experienced by a person in good health.
In an attempt to address this question more rigorously some years ago we asked a number of people to keep daily records of their dreams, and did the same for an age-matched group of people with non-lethal chronic illnesses.
In this way we were able to separate out issues of death and dying from the more general losses associated with ageing and failing health. Samples of the dreams were then presented to professionals in the field, with the request that they attempt to identify which were from people with terminal illnesses and which were not.
Despite the fact that these dreams were not specifically selected for death-related content, judges were able to identify the dreams significantly more often than would be expected by chance, supporting the notion that the dreams of dying people were indeed distinctive.
Such research is not purely academic; as with the studies of staff stress, there is a very real and practical issue involved. It is far from uncommon for patients with life-threatening illness to report that their dreams cause them considerable distress, often to the extent of making them frightened to sleep.
Theoretically the occupance of nightmares is not entirely surprising; it is known from studies of the impact of traumatic events that people may suffer nightmares in consequence, and of course being told that one is going to die might well be considered such a traumatic event.
Moreover, it is known that some people are, in effect, chronic nightmare sufferers, so some nightmares would be expected from time to time amongst dying patients simply reflecting this kind of history in some patients.
Finally, it should be remembered that opiates like morphine, widely prescribed to cancer patients, have long been known to carry the risk of producing hallucinations and nightmares. Looked at in this context, therefore, the occupance of nightmares amongst dying people may not be entirely surprising.
However, as yet, there is little information even on the most basic of questions relating to this, such as how prevalent nightmares are amongst dying patients, let alone information on what might be the causes of such nightmares and how they might best be treated. In an attempt to clarify some of these issues Xander Lub, Theo van der Bijn and I worked together with hospice colleagues to monitor the frequency of nightmares in dying patients.
As yet such research is only in its early stages, but preliminary results suggest that nightmares occur in terminally ill patients with a similar frequency to that in young adults. This in itself is a surprising finding, because research in healthy populations suggests that the frequency of nightmares decreases with age, and that all other things being equal we should have expected a lower rate in our older, dying sample. A number of factors appear to contribute to the likelihood of nightmares, including sleeping with a light on rather than sleeping in the dark, prescription of moderate (rather than high or low) doses of morphine etc.
It is now important to continue such research to tease out the relative influence of the various factors, and to correct failings in the previous research -- for example, our use of the term "nightmare" was probably unwise, as illustrated by a more recent study conducted by Kathryn Russell as part of her Master's degree at Auckland University.
In a study of healthy individuals' experience of dreams and nightmares, Kathryn found that a substantial percentage of what the respondents called "dreams" were as distressing to them as the average nightmare; clearly if we are concerned primarily with the possibility of relieving distress, it is necessary not to restrict ourselves just to those dreams which the individual classes as a nightmare, and in future the broader term "distressing dreams" would seem more promising.
What is clear, however, is that research such as this, research which is now ready to be pursued in New Zealand as well as in the UK, promises to be of considerable assistance in understanding, identifying, and helping with a problem which can seriously impair the quality of life of many people for whom each remaining day, and night, is valuable.
As things stand at present, it is probably fair to say that research in psychological aspects of terminal care remains sparse, and that what we do not know vastly outweighs what we do. Nevertheless, the problems remain, and we cannot expect the terminally ill patients of today to wait for the results of research before attempting to provide help and support.
Drawing on direct clinical experience -- both with dying patients and with others -- psychologists are increasingly becoming involved with the training of others and with the direct treatment of psychological problems of patients. Skills learned in other contexts, as well as in terminal care, are enabling psychologists to contribute to areas such as the teaching of communication skills, the development of coping strategies for dealing with stress etc.
And of course psychologists are taking the skills they have developed with individuals in good physical health to help address the psychological problems of those at the opposite end of the spectrum.
Clearly such strategies cannot be transplanted directly from one group to the other, and the adaptation of the therapies constitutes one of the important challenges facing the clinical psychologist.
One of the pioneers in the field, the Swiss psychiatrist Elisabeth Kubler-Ross, coined the term "acceptance" for the experience of some patients who, as one of her patients described it, had reached a time for "the long rest before the final journey".
Whilst it would probably be a mistake to expect that all or even most patients should show such acceptance before their deaths, such a notion does raise the possibility that one might indeed go gently into the good night.
Hopefully in the years to come, psychology will be able to make a major contribution to helping people do so.
R Glynn Owens is Professor of Psychology at the University of Auckland.
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