12: Living, Dying, Grieving
Reading:
Here are three downloadable documents and three sites on the web (lots more if you wish to search for 'dying process') with valuable information about issues related to dying:
• an attractive warmly expressed clear statement on one big page of basic information about what happens as a person goes through the dying process. source: Chinese-American Coalition for Compassionate Care
• a long and detailed instructional document for caregivers, covering physical and psychological issues. source: Hospice Foundation of America
• here is an ABC Radio National Health Report discussion about bereavement
• and this RN discussion focused on suicide has interesting things to say about the function of sadness and 'normal' grief processes [click orange text after the introduction, to see transcript]
• this web site deals specifically with brain tumour and the dying process and has been very valuable to some members of our group
• A four page medical journal article reviewing ideas about how people proceed through the dying process, concluding:
"The goal for all those attempting constructive intervention should be successful maintenance of open, honest, and warm relationships with the patient and among themselves."
Source: Canadian Family Journal, 1976, now
in place on the website of the US National Institutes of Health.
Discussion:
There is no right way to die or to grieve, everyone will do this differently. It can be the burdens we place on ourselves as well as on each other, often unintentionally, that may make it harder or easier.
Dying brain tumour patients differ from many other cancer sufferers in that they may experience much less pain, tending to drift into somnolence and beyond.
Some write about dying from perspectives convinced of what may happen after death. This note does not discuss that... that is a subject for the individual, it may shape attitude to dying.
The Canadian paper above proposes that the dying experience depends on:
1: the chronology of events
2: relationships and communication between the dying person and others, and
3: the reactions of the dying person, influenced quite a bit by 1 and 2
This paper speaks of three forms of reaction [factor 3]: avoidance, emotional turmoil and adaptation. It notes that each of these is appropriate in its own measure and time. This seems useful. Someone marrying may sensibly, for example, think about a Will, which is an adaptive approach to death... but in other ways should surely be entirely avoidant towards death, with emotions charged in other directions. In a situation of diagnosis of life-threatening illness, however, to put off practical management of affairs, including a will, is denying the importance of that measure of adaptation and may reflect emotional turmoil.
The situation is very complex, however, especially as medicine aims to heal and defer death and we each seek to do that in some measure. To what extent, for example, are families or governments to contribute to expensive treatment costs and how are the costs and benefits assessed in relation to the individual? This matter is dealt with in our section about financial matters, but not only of the beneficiary of treatments to defer death but also of family gathered around are impacted by how everyone addresses this... we can say "accept the diagnosis, ignore the prognosis" but we avoid some measure of realism at peril. One of the big perils in brain tumour is that deferring decisions can mean capacities are lost before they can be brought to bear on issues. †
† Writing this, I do not only have in mind mundane and practical matters. After my wife's brain tumour diagnosis, I thought how nice it would be to have a movie camera to enable Margaret to talk on camera. I avoided discussing this as an urgency. I broached the camera idea but without the context of recording her talking about her life. I knew 'she knew' why, though we didn't speak about having a record. Margaret agreed that we buy a camera; cruelly and ironically, Margaret's capacity to speak at length shrivelled at about the same time... In the autumn of 2001 Margaret said she would like to go back home to Western Australia—but to do that in spring, when the wildflowers would be on show; it was very hard to say, but I did manage to say "Is it wise to defer?" Margaret was in trouble with recurrence before we could make any arrangements at all and died in early spring. Don't miss out on life by denying the possibility of death.
In some families, in some cultures, for some individuals, death is not discussed or is difficult to discuss (there is some difficulty for everybody). Reluctance or forbidding discussion makes all the three elements listed above difficult to come to terms with, if there is difficulty with acceptance on any possible chronology, or rejection of discussion. The whole business gets messy. Someone has to break the ice in discussions. ††
†† When I eventually got to ask Margaret for her thoughts on funeral arrangements, which I thought she would have difficulty talking about, she said: "I'm glad you asked about that, I thought you didn't want to talk about it." We can stalk around the imaginings of the other's inhibitions... maybe just another manifestation of life's dilemma... who's going to pop the big question!
It is not only the person confronted by death whose processes of dying (plus, urgently, living and grieving) are complicated by denials; the situation is also made more difficult for family and friends, in their present and their future living and grieving.
[incompete]