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Optimizing bereavement outcome: Reading the road ahead
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Sci. Med. Vol. 35, No. 12, pp. 1521-1523, 1992 Printedin Great Britain Sm.
OPTIMIZING BEREAVEMENT OUTCOME: READING THE ROAD AHEAD ANN COULDRICK
Sir Michael
Sobell House,
Churchill
Hospital,
Oxford,
U.K.
Abstract-After a death has occurred, those most affected are left to make sense of the illness and the awesome event that has taken place. When the death is caused by cancer, many skills may have been employed to ensure that the palliative care was of a high enough standard. Yet still many mourners reflect with sadness and bitterness about the experience that was unique to them. In the process of evaluating a volunteer bereavement support programme, the key carers were asked to reflect upon their experience before, during and after the death. If we listen to them, we can learn the ways in which our skills can enable the death to be an enriching experience and not one which interferes with mourning. Key words-care
and forsight,
communication,
bereavement,
Mourning is not forgetting, it is an undoing. Every minute tie has to be untied and something permanent and valuable recovered and assimilated from the knot [I].
How we mourn and how our mourning resolved, will depend on l l l l l l
will be
How we perceive the loss. Our age. The age of the person dying. How prepared we were. Our inner strengths and outer resources. Our relationship with the person who died.
In this paper I want to consider the significance of the time with the dying person, the last weeks, days and hours. Robbins [2] stresses that “a gentle passage from life to death can only be achieved in a large measure by relieving any distressing symptom of mind, body and spirit”. Terminal care does not end with the death of the patient-whose suffering is over. The suffering of the family may be beginning. Thomas Mann said “a man’s dying is more the survivor’s affair than his own”. So what is a good death experience for the survivors? Nimocks suggests that “Goodness can be defined in terms of the extent to which the interactants accept the impending death, receive mutual emotional care and spiritual support, mitigate the dying person’s discomfort and isolation and complete unfinished business” [3]. Cameron and Parkes [4] draw our attention to the fact that, where the patient suffered uncontrolled pain, the key carer suffered from the memory of that pain long after the death. They also suggest that the carer felt that when the death was unanticipated, the bereaved become preoccupied by remorse and guilt. Parkes and Cameron wrote this in 1983, and yet as recently as this year, a widow wrote bitterly to a British newspaper, disclosing how she and her dying husband had been denied the opportunity to share
terminal
care
the knowledge that he was dying [5]. The staff, despite appeals for information, had urged the couple to believe that the treatment was arresting the disease, until 5 hr before the husband’s death, when they finally admitted that it could not. Unanticipated bereavement, with shock, anger and persistent illusions that the dead person will return, is hard to bear but may be alleviated where the patient has cancer. There is a need for accurate information about the situation together with emotional support that allows time for the impending loss to be taken in and the changes anticipated and prepared for. Ideally the patient can be similarly informed and supported so that the whole family is on the same wavelength and mutual sharing is possible. But it takes time to break bad news, it takes time to believe what you have been told but, it is possible for a person’s psychological state to improve whilst his physical condition is deteriorating. Stedeford [6] maintained that this preparation has a significant effect on the carer who has come to terms with the illness, the death and life without that person.
READING THE ROAD AHEAD
For the last 3 years we have been evaluating the bereavement support service at Sobell House. Up to 150 key carers, that is those who were perceived by the hospice team, to be the most significantly affected by the patient’s death, have been interviewed at 13 and 20 months to explore the physical and emotional effects precipitated by the death, and the level of support they had received. The bereaved who felt the illness and the dying was managed well seem to be saying this: There is a need for someone to be in control, that is, to contain the situation for both the patient and the family.
1521
1522
ANNCOULDRICK
Sarton in her book “A Reckoning” speaks of the nurse, being “streetwise in death”, and reminds us that each death that a family experiences is unique for them. They simply do not know what to expect. They are lost and afraid and need to feel that someone has experienced it before and can guide them. Mrs 0, whose husband David died aged 40 years, said in her interview 13 months after his death! ‘the last vear of his illness and the days before his death had an enormously significant effect upon the way I have felt in this last year; we managed to say everything we wanted to one another. I knew that although he was very weak, he had little pain and there was always someone to turn to’.
What else does control mean? That the symptoms were not unexpected to the professional and mostly could be alleviated and that the person who was dying could remain in control of their environment. Care The relatives also indentified the importance of the care given by professionals, that is that the standards of medical and nursing care were ‘good enough’. This was one typical comment from a relative recalling the time before the death: I knew that we were cared for. The nurses came when they said they would. The Doctors never gave up on her. She wasn’t always without pain but I knew the staff never stopped trying to get it right.
In simple ways the road ahead may be read. Care includes anticipating problems such as incontinence and loss of mobility. Measures such as having to hand a mackintosh to protect the bed and a commode may be simplistic and yet incontinence may precipitate a crisis which may be the last straw for the carer. Relatives said The nurse showed me how to transfer him from the bed to
the commode without hurting him. She taught me how to massage my mother so that I never felt helpless when she cried because her back hurt. The nurse taught us how to change wet sheets with my husband still lying in the bed. And even more importantly the professionals need to prepare the family for the changes that may occur in the last few days or hours and be accessible to reassure or advise about: . Confusional states which often herald death . Restlessness, perspiring, colour changes . Exacerbation of pain which may be controlled quickly when the family have been taught how to adjust oral analgesia. . Altered states of consciousness which bring home the reality of impending death . Alteration in breathing patterns which may be interpreted as signs of distress The route of medication can be planned. How many patients are admitted to hospital hours before death because the appropriate medication is not
available or simply because the family had no one to turn to? The patient becomes restless, the colour changes, the breathing seems distressed. Tragically the dying person may find himself living his last hours in an ambulance on his way to die amongst strangers. I would suggest that this can be avoided by good communication. Communication Communication with the family is essential if the patient is also to share the responsibility for the management of his illness and his death. He must be given honest information from which he may make choices. He may choose to die in hospital, but he cannot make that choice if all around him conspire to exclude him [7]. Mrs D, deeply jaundiced and within days of her death was told by her family that she would recover. Desperately sad and lonely in her hidden fear that she was mortally ill, she eventually plucked up the courage to ask the nurse ‘Am I dying? The nurse knew how strongly the family felt that she should not know simply held her hands, without replying. Mrs D understood and they wept together, and then the nurse said ‘If you knew that you were dying, what would you like to do? She sent for her family and told them that she wanted to come home to die. She then discussed and planned with her husband and sister the future care of her 6 year old daughter. In bereavement her family feel that she had control over her life and death, that she helped them to care for her, and that she enabled them to communicate at the deepest level with her and amongst themselves. They are proud of her and of themselves because they achieved what she wanted. Yes, they are sad, they mourn her, but their mourning is not complicated by regret and guilt. Lastly, I want to consider children facing a loss of a parent. We can read a little of the road ahead of them. They need to feel included and informed. There are clear indications that the loss of a parent is not as damaging as the bewilderment and the emotional climate of deprivation that may ensue [8,9]. We can assist the parents to prepare and support the bereaved child. Andrew’s mother died one Christmas Eve when he was just 8 years old. His father wondered if he should send him away to loving grandparents, after all Christmas is a time to be happy. He talked it through with the nurse and the doctor and finally decided that the time left for his wife was precious for all three of them. Andrew was with his mother when she died. He washed her hands and face and combed her hair, and together they kept vigil until daylight. His father informed the school of the death and when his class resumed, Andrew returned to school. His teacher did not know what to say to him, but as was usual she asked the children to tell about their Christmas. To her horror, Andrew stepped forward. He said simply to the class, ‘My mother died on Christmas Eve. I was there, I washed her and then we had a funeral’. The children were absorbed. ‘What did she look like?‘, they asked ‘where is she now?’ Straightforwardly, he answered them and explained that she was in the
1523
Optimizing bereavement outcome ground now because she did not need her sick body any longer. The teacher thanked him and he returned to his seat, but when they filed out for break, she noticed that the children gathered around him, and touched him. She felt that Andrew had opened the way for her by his honesty and openness. She could now acknowledge his loss, check out with him how life is without a mother. It is now 2 years since her death. Andrew talks about her comfortably. He has photographs by his bed and he cherishes what he calls ‘mum’s box’ which his mother prepared for him. In it is a favourite brooch, a book of poems, that she hoped he would learn to love, and many pictures of the family together. He rarely looks in it now but never goes on holiday without it. Reading the road ahead is not always easy. We cannot always forsee traumatic events but we have to try so that those who mourn, do not have their mourning ties tangled by our indifference and ignorance. Mourning is not forgetting, it is an undoing. Every minute tie has to be untied and something permanent and valuable recovered and assimilated from the knot [l].
REFERENCES
1. Allingham M. Tiger in the Smoke, p. 38, Chatto & Windus, London, 1952. 2. Robbins J. Caring.for the Dying Patient and the Family, _ pp. 141-142. Ha&r & Row, London, 1983. 3. Nimocks M. J. A.. Webb L. and Connell J. R. Communication and the terminally ill: a theoretical model. Death Stud. II, 323-344, 1987. 4. Cameron J. U. and Parkes C. M. Terminal Care: evaluation of effects on surviving family of care before and after bereavement. Post Graduate Med. J. 59, 73-78, 1983. 5. Herxberg E. The bitterness of not knowing the worst. Independent Newspaper, 1990. 6. Stedeford A. Essential Psychiatry, p. 220. Blackwells, Oxford, 1988. 7. Glaser B. G. and Strauss A. L. Awareness of Dying. Aldine, Chicago, 1965. 8. Elizer E. and Kaffman M. Factors influencing the severity of childhood bereavement reactions. Am. J. Orthopsychiat. 53, 668-676, 1983. 9. Hilgard J. Newman M. and Fisk J. Strength of adult ego following childhood bereavement. Am. J. Orthopsychiat. 30, 788-799, 1960.
Sci. Med. Vol. 35, No. 12, pp. 1521-1523, 1992 Printedin Great Britain Sm.
OPTIMIZING BEREAVEMENT OUTCOME: READING THE ROAD AHEAD ANN COULDRICK
Sir Michael
Sobell House,
Churchill
Hospital,
Oxford,
U.K.
Abstract-After a death has occurred, those most affected are left to make sense of the illness and the awesome event that has taken place. When the death is caused by cancer, many skills may have been employed to ensure that the palliative care was of a high enough standard. Yet still many mourners reflect with sadness and bitterness about the experience that was unique to them. In the process of evaluating a volunteer bereavement support programme, the key carers were asked to reflect upon their experience before, during and after the death. If we listen to them, we can learn the ways in which our skills can enable the death to be an enriching experience and not one which interferes with mourning. Key words-care
and forsight,
communication,
bereavement,
Mourning is not forgetting, it is an undoing. Every minute tie has to be untied and something permanent and valuable recovered and assimilated from the knot [I].
How we mourn and how our mourning resolved, will depend on l l l l l l
will be
How we perceive the loss. Our age. The age of the person dying. How prepared we were. Our inner strengths and outer resources. Our relationship with the person who died.
In this paper I want to consider the significance of the time with the dying person, the last weeks, days and hours. Robbins [2] stresses that “a gentle passage from life to death can only be achieved in a large measure by relieving any distressing symptom of mind, body and spirit”. Terminal care does not end with the death of the patient-whose suffering is over. The suffering of the family may be beginning. Thomas Mann said “a man’s dying is more the survivor’s affair than his own”. So what is a good death experience for the survivors? Nimocks suggests that “Goodness can be defined in terms of the extent to which the interactants accept the impending death, receive mutual emotional care and spiritual support, mitigate the dying person’s discomfort and isolation and complete unfinished business” [3]. Cameron and Parkes [4] draw our attention to the fact that, where the patient suffered uncontrolled pain, the key carer suffered from the memory of that pain long after the death. They also suggest that the carer felt that when the death was unanticipated, the bereaved become preoccupied by remorse and guilt. Parkes and Cameron wrote this in 1983, and yet as recently as this year, a widow wrote bitterly to a British newspaper, disclosing how she and her dying husband had been denied the opportunity to share
terminal
care
the knowledge that he was dying [5]. The staff, despite appeals for information, had urged the couple to believe that the treatment was arresting the disease, until 5 hr before the husband’s death, when they finally admitted that it could not. Unanticipated bereavement, with shock, anger and persistent illusions that the dead person will return, is hard to bear but may be alleviated where the patient has cancer. There is a need for accurate information about the situation together with emotional support that allows time for the impending loss to be taken in and the changes anticipated and prepared for. Ideally the patient can be similarly informed and supported so that the whole family is on the same wavelength and mutual sharing is possible. But it takes time to break bad news, it takes time to believe what you have been told but, it is possible for a person’s psychological state to improve whilst his physical condition is deteriorating. Stedeford [6] maintained that this preparation has a significant effect on the carer who has come to terms with the illness, the death and life without that person.
READING THE ROAD AHEAD
For the last 3 years we have been evaluating the bereavement support service at Sobell House. Up to 150 key carers, that is those who were perceived by the hospice team, to be the most significantly affected by the patient’s death, have been interviewed at 13 and 20 months to explore the physical and emotional effects precipitated by the death, and the level of support they had received. The bereaved who felt the illness and the dying was managed well seem to be saying this: There is a need for someone to be in control, that is, to contain the situation for both the patient and the family.
1521
1522
ANNCOULDRICK
Sarton in her book “A Reckoning” speaks of the nurse, being “streetwise in death”, and reminds us that each death that a family experiences is unique for them. They simply do not know what to expect. They are lost and afraid and need to feel that someone has experienced it before and can guide them. Mrs 0, whose husband David died aged 40 years, said in her interview 13 months after his death! ‘the last vear of his illness and the days before his death had an enormously significant effect upon the way I have felt in this last year; we managed to say everything we wanted to one another. I knew that although he was very weak, he had little pain and there was always someone to turn to’.
What else does control mean? That the symptoms were not unexpected to the professional and mostly could be alleviated and that the person who was dying could remain in control of their environment. Care The relatives also indentified the importance of the care given by professionals, that is that the standards of medical and nursing care were ‘good enough’. This was one typical comment from a relative recalling the time before the death: I knew that we were cared for. The nurses came when they said they would. The Doctors never gave up on her. She wasn’t always without pain but I knew the staff never stopped trying to get it right.
In simple ways the road ahead may be read. Care includes anticipating problems such as incontinence and loss of mobility. Measures such as having to hand a mackintosh to protect the bed and a commode may be simplistic and yet incontinence may precipitate a crisis which may be the last straw for the carer. Relatives said The nurse showed me how to transfer him from the bed to
the commode without hurting him. She taught me how to massage my mother so that I never felt helpless when she cried because her back hurt. The nurse taught us how to change wet sheets with my husband still lying in the bed. And even more importantly the professionals need to prepare the family for the changes that may occur in the last few days or hours and be accessible to reassure or advise about: . Confusional states which often herald death . Restlessness, perspiring, colour changes . Exacerbation of pain which may be controlled quickly when the family have been taught how to adjust oral analgesia. . Altered states of consciousness which bring home the reality of impending death . Alteration in breathing patterns which may be interpreted as signs of distress The route of medication can be planned. How many patients are admitted to hospital hours before death because the appropriate medication is not
available or simply because the family had no one to turn to? The patient becomes restless, the colour changes, the breathing seems distressed. Tragically the dying person may find himself living his last hours in an ambulance on his way to die amongst strangers. I would suggest that this can be avoided by good communication. Communication Communication with the family is essential if the patient is also to share the responsibility for the management of his illness and his death. He must be given honest information from which he may make choices. He may choose to die in hospital, but he cannot make that choice if all around him conspire to exclude him [7]. Mrs D, deeply jaundiced and within days of her death was told by her family that she would recover. Desperately sad and lonely in her hidden fear that she was mortally ill, she eventually plucked up the courage to ask the nurse ‘Am I dying? The nurse knew how strongly the family felt that she should not know simply held her hands, without replying. Mrs D understood and they wept together, and then the nurse said ‘If you knew that you were dying, what would you like to do? She sent for her family and told them that she wanted to come home to die. She then discussed and planned with her husband and sister the future care of her 6 year old daughter. In bereavement her family feel that she had control over her life and death, that she helped them to care for her, and that she enabled them to communicate at the deepest level with her and amongst themselves. They are proud of her and of themselves because they achieved what she wanted. Yes, they are sad, they mourn her, but their mourning is not complicated by regret and guilt. Lastly, I want to consider children facing a loss of a parent. We can read a little of the road ahead of them. They need to feel included and informed. There are clear indications that the loss of a parent is not as damaging as the bewilderment and the emotional climate of deprivation that may ensue [8,9]. We can assist the parents to prepare and support the bereaved child. Andrew’s mother died one Christmas Eve when he was just 8 years old. His father wondered if he should send him away to loving grandparents, after all Christmas is a time to be happy. He talked it through with the nurse and the doctor and finally decided that the time left for his wife was precious for all three of them. Andrew was with his mother when she died. He washed her hands and face and combed her hair, and together they kept vigil until daylight. His father informed the school of the death and when his class resumed, Andrew returned to school. His teacher did not know what to say to him, but as was usual she asked the children to tell about their Christmas. To her horror, Andrew stepped forward. He said simply to the class, ‘My mother died on Christmas Eve. I was there, I washed her and then we had a funeral’. The children were absorbed. ‘What did she look like?‘, they asked ‘where is she now?’ Straightforwardly, he answered them and explained that she was in the
1523
Optimizing bereavement outcome ground now because she did not need her sick body any longer. The teacher thanked him and he returned to his seat, but when they filed out for break, she noticed that the children gathered around him, and touched him. She felt that Andrew had opened the way for her by his honesty and openness. She could now acknowledge his loss, check out with him how life is without a mother. It is now 2 years since her death. Andrew talks about her comfortably. He has photographs by his bed and he cherishes what he calls ‘mum’s box’ which his mother prepared for him. In it is a favourite brooch, a book of poems, that she hoped he would learn to love, and many pictures of the family together. He rarely looks in it now but never goes on holiday without it. Reading the road ahead is not always easy. We cannot always forsee traumatic events but we have to try so that those who mourn, do not have their mourning ties tangled by our indifference and ignorance. Mourning is not forgetting, it is an undoing. Every minute tie has to be untied and something permanent and valuable recovered and assimilated from the knot [l].
REFERENCES
1. Allingham M. Tiger in the Smoke, p. 38, Chatto & Windus, London, 1952. 2. Robbins J. Caring.for the Dying Patient and the Family, _ pp. 141-142. Ha&r & Row, London, 1983. 3. Nimocks M. J. A.. Webb L. and Connell J. R. Communication and the terminally ill: a theoretical model. Death Stud. II, 323-344, 1987. 4. Cameron J. U. and Parkes C. M. Terminal Care: evaluation of effects on surviving family of care before and after bereavement. Post Graduate Med. J. 59, 73-78, 1983. 5. Herxberg E. The bitterness of not knowing the worst. Independent Newspaper, 1990. 6. Stedeford A. Essential Psychiatry, p. 220. Blackwells, Oxford, 1988. 7. Glaser B. G. and Strauss A. L. Awareness of Dying. Aldine, Chicago, 1965. 8. Elizer E. and Kaffman M. Factors influencing the severity of childhood bereavement reactions. Am. J. Orthopsychiat. 53, 668-676, 1983. 9. Hilgard J. Newman M. and Fisk J. Strength of adult ego following childhood bereavement. Am. J. Orthopsychiat. 30, 788-799, 1960.