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The rights of the dying

The Rights of the Dying by David Kessler, published by Vermillion (a UK imprint of Ebury Press and Random House; 1997; ISBN 0 09 186413 5; 204 pages, £8.99). Reviewed by Nicholas Albery.

The rights of the dying as listed in this book are as follows:

  • The right to be treated as a living human being.

    'The right to maintain a sense of hopefulness, however changing its focus may be.'

  • The right to maintain a sense of hopefulness, however changing its focus may be.

  • The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

  • The right to express feelings and emotions about death in one's own way.

  • The right to participate in all decisions concerning one's care.

  • The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one's needs.

  • The right to expect continuing medical care, even though the goals may change from 'cure' to 'comfort' goals.

  • The right to have all questions answered honestly and fully.

  • The right to seek spirituality.

  • The right to be free of physical pain.

  • The right to express feelings and emotions about pain in one's own way.

  • The right of children to participate in death.

  • The right to understand the process of death.

  • The right to die.

  • The right to die in peace and dignity.

  • The right not to die alone.

  • The right to expect that the sanctity of the body will be respected after death.

    These are all very well as far as they go, but they do seem rather to miss out on the point of making such declarations, which should surely be to give current practices a profound shove in the desired direction. Some of the above rights are unpolitical and unspecific and they beg too many questions. Does the "right to die" for instance, imply a right to euthanasia? The author seems unclear on this point. As for the "right not to die alone", what about those who would prefer to be left alone, just as some animals prefer to be alone in their dying?

    And some of the rights would seem to require a degree of divine intervention beyond the power of doctors. There can hardly be a "right to die in peace and dignity" since this depends on a medley of circumstances, such as the character of the person who is dying and the nature of the disease. As David Kessler himself writes in the body of the text: "Few people have a peaceful death ... Many dying people appear to be struggling toward the end ... It is not unusual for a dying person to let out a loud yell that seems to come from deep within at the moment of death."

    Compare the above with the following list of rights prepared in 1993 by the Natural Death Centre:

    A Declaration of the Rights of the Person Dying at Home

  • I have the right to sufficient support from the National Health Service and the community to enable me to die at home, if I so wish, whether or not I have relatives to care for me.

  • I have the right not to die alone; although with the right to be left alone, if desired.

    'I have the right to expect the local priest to ask the neighbourhood to support me and those caring for me'

  • I have the right to expect the local priest or other community leader to ask the neighbourhood to support me and those caring for me.

  • I have the right to have 'midwives for the dying' or their equivalent to attend to my physical, emotional and spiritual needs.

  • I have the right to the same expertise of pain relief as I would obtain if occupying a hospital or hospice bed.

  • I have the right not to be taken without my consent to hospital as my condition deteriorates, or, if a hospital operation is required to relieve pain, I have the right to be brought home again afterwards.

  • I have the right to have any Living Will I have signed respected and, if not fully conscious myself, to have the wishes of my appointed proxy respected.

  • I have the right to reject heart stimulants, blood transfusions or other medical interventions to prolong my life.

  • I have the right, to the extent that I so wish, to be told the truth about my condition and about the purposes of, alternatives to, and consequences of, any proposed treatments.

  • I have the right to fast as death approaches, if I so desire, without being subjected to forced feeding in any form.

  • I have the right to discuss my death and dying, my funeral or any other related matters openly with those caring for me.

  • I have the right to as conscious and dignified a death as possible in the circumstances.

  • I have the right, if I so express the wish and if the circumstances allow, for my body to remain undisturbed at home after death for a period, and for my funeral to be handled by my relatives and friends, if they so desire, without intervention by funeral directors.

    The differences here are that many of these rights would extend into new territory and would represent advances on current practice and are tightly enough worded so that it would be clear if they were being broken.

    Nevertheless, the rights in Kessler's book are merely chapter headings, loose pegs on which to hang a useful account of his experience from working in a hospice environment in the States and his advice regarding death and dying.

    Thus he describes the helpful 'ABCDE' approach to pain assessment:

  • A. Ask about pain regularly

  • B. Believe the patient and family in their reports of pain and what relieves it.

  • C. Choose pain control options appropriate for the patient, family and setting.

  • D. Deliver interventions in a timely, logical and co-ordinated fashion.

  • E. Empower patients and their families.

    He suggests that medications for persistent cancer-related pain should be administered on a round-the-clock basis, with additional doses as needed, so as to help maintain a constant level of the drug in the body and so prevent a recurrence of pain.

    'People I have cared for have written "Dear Cancer" letters'

    In the section of the book on spirituality, he advocates Marianne Williamson's technique (described in her book A Return to Love) of writing your disease a letter, so as to be able to admit to and confront one's buried feelings. "They also help", says Kessler "to get in touch with our deeper, spiritual selves. People I have cared for have written 'Dear Cancer' letters, 'Dear Leukemia' letters and 'Dear AIDS' letters. In these letters, they talk about their anger at their diseases, they share their feelings about what has happened. Some ask for their diseases to leave, others ask that they live together in harmony."

    Kessler quotes emergency room physician Mark Katz on how even with emergency cases of cardiac arrest, a degree of dignity and calm can be preserved, if a special effort is made. "I try to keep the energy soft yet thorough", says Mark Katz. "I try to talk calmly yet firmly so things do not get crazy when we have a cardiac arrest here. If we have done everything possible without any success, a person should pass out of life with as much dignity as possible."

    The book ends with a moving spiritual message for the dying, which concludes:

    "You were carried off in the miracle of birth, and so you will be carried off in the miracle of death. All that we are, all that we have felt for you, all the love that was given to you, will be your cushion on this journey. Now you will begin. I wish you love, peace and a safe passage ..."

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