Elisabeth Kubler-Ross et al, Living with Death and Dying, 1981, Souvenir Press.
Although neither of these books is very new, Elisabeth Kubler-Ross’s work has not been superseded as basic texts on the subject by the more recent books which have followed her lead. On Death and Dying in particular could be regarded as essential reading for all therapists, regardless of their specialisms, simply because it blazes forth the message of the person’s integrity right to the end, and the importance of that integrity being fully respected by all carers. Kubler-Ross’s account of her project of interviewing terminally ill patients in the University of Chicago Billings Hospital and the opposition she encountered from the hospital staff is more than illuminating - it is deeply moving and, as she constantly points out, it springs from “the need of the hospital staff to deny the existence of terminally ill patients on their wards”. Those devoted to saving lives seem themselves unable to bear the “failure” of letting patients “slip away” and this can lead to actual cruelty in the treatment of the dying.
The book opens with the Freudian assertion that the unconscious cannot conceive of its own death – “in simple terms, in our unconscious we can only be killed” – and from this, Ross argues lucidly, fear and the need to deny death arises. From this too comes the guilt and anger which Ross suggests may well have been better dealt with by rituals in the past, such as breast- beating and tearing of clothes:
“all means of asking others to take pity on them, the mourners, and are expressions of sorrow, grief and shame. A person who grieves, beats his breast, tears his hair, or refuses to eat, is attempting self-punishment to avoid or reduce the anticipated external punishment for the blame he expects on the death of a loved one.”
The other side of this is that the dying “is often treated like a person with no right to an opinion.” The rest of the book explores the complexities of this position in ways which are remarkably free of blame and clear-sighted.
The second chapter of the book indicates Ross’s attitude to her work – she learns from it, and calls the chapter “The Dying as Teachers”. The first thing her team found out was that “patients knew about their terminal illness anyway, whether they were explicitly told or not.” Her observations made her aware that the endlessly “optimistic” attitudes, the “never-say-die” tone of the doctors and staff in the hospital, were received by many patients as demands, or as refusals to communicate at the level which they so badly needed.
“Doctors who need denial themselves will find it in their patients and those who can talk about terminal illness will find their patients better able to face it. The need for denial is in direct proportion with the doctor’s need for denial.” And this does not affect only the patient’s contacts with the doctor – the doctor will set the tone for his staff and may specifically forbid them to tell the patient anything. Ross calls for doctors to examine their own feelings about death and rather than saying to themselves, “Do I tell my patient?” to say “How do I share this knowledge with my patient?” “It is an art to share painful news with any patient. The simpler it is done, the easier it is usually for a patient who recollects it at a later date if he can’t “hear it” at the moment. Our patients appreciated it when they were told in the privacy of a little room rather than being told in the hallway of a crowded clinic.”
The main part of the book is devoted to describing the various stages which the patient may go though and Ross gives long and fascinating transcripts of interviews to illustrate the various points on the journey. At no time does her focus waver from the deeply humane concern with the dying person. The first stage, “Denial and Isolation” is described movingly. “Denial functions as a buffer after unexpected shocking news, allows the patient to collect himself and, with time, to mobilise other, less radical defences. This does not mean, however, that the same patient later on will not be willing or even happy and relieved if he can sit and talk with someone about his impending death… when he is ready to face it.”
The following stages of Anger, Bargaining (Guilt and Hostility), Depression and Acceptance are all described with great insight and humanity.
“Acceptance should not be mistaken for a happy stage. It is almost void of feelings… It is also the time during which the family needs usually more help, understanding and support than the patient himself.”
This leads naturally on to “The Patient’s Family” and the importance of acknowledging their needs as well. “The dying patient’s problems come to an end but the family’s problems go on.” Everything from this chapter on is so immediately relevant to any therapeutic practice that I really feel this book should be required reading! The examples which Ross gives of family reactions are clear and explicit, and so is the risk of ignoring their needs –
“If we tolerate their anger… we are helping them take a great step towards acceptance without guilt. If we blame them for daring to ventilate such socially poorly tolerated thoughts, we are blame-worthy for prolonging their grief, shame and guilt which often results in physical and emotional ill health.”Transcripts of interviews with relatives make up an entire chapter. There is also a vital discussion on the way in which “the children are often the forgotten ones … few people feel comfortable talking to a child about death.”
The issues in Living With Death and Dying are on the whole more specific. There are useful essays “The use of drawings made at significant times in one’s life” and “Parent care: total involvement in the care of a dying child”. However, perhaps the most surprising piece in this collection is the last, “The issue of sudden death”, which is based on an interview with an emergency- room attendant in the hospital. This raises all the issues from a completely different angle and underlines, if any emphasis were needed, the basic concept that it is our own feelings about death which determine how we treat the dying – and that is not good enough.