CLINICAL TERMINAL CARE
Coping with dying and bereavement Penny Parkinson RGN, NDN, is District Nursing Sister, Hope Street Clinic, Grimsby.
This article explores the likely processes which patients andfamilies undergo from the diagnosis of terminal illness to the loss ofa loved one. The author argues that only by understanding these processes can nurses hope to offer appropriate care and support to affected individuals.
Despite the growth of interest and knowledge in various aspects of death and dying, and the growth of the hospice movement in recent years, society still tends to regard death as a 'taboo' subject, one to be avoided and evaded at all costs in both personal and professional life. Discussing death is often regarded as a morbid activity with children, in particular, being excluded on the pretext that it ‘would be too much for them'. Yet, dying is a process all of us will experience, although the timing and nature of our death and the quality of our dying is infinitely variable (1). Glaser and Strauss (2) suggest that dying is a predictive term, indicating the likelihood that a person will die within a socially agreed time perspective. They have described this time perspective as the dying trajectory’. It has two characteristics: duration and 'shape', in the sense that the dying process can be represented graphically as moving staight down, moving up and down before the final descent, or moving onto a plateau for a period of time before descending. An important consideration within the process of dying is awareness of death. Glaser and Strauss define awareness as what each interacting person knows of the patient's defined status, combined with the patient’s recognition of others’ awareness of his defi nition. They identify four awareness contexts: • Closed awareness, where the patient does not recognise he or she is dying, although everyone around does. • Suspected awareness, when the patient suspects that he or she may be dying and attempts to find out what the prognosis is. • Mutual pretence awareness, when everyone knows the patient is dying but all pretend they do not. • Open awareness, where the patient, relatives and staff all admit that death is inevitable and speak and act accordingly. It is within the identification of these aware
ness contexts that interactions between patients, relatives and staff takes place and can affect the management of the dying patient. Kiibler Ross (3) favours the context of ‘open awareness’. She believes that the question is not 'do 1 tell my patient’, but 'how do 1 share this knowledge with my patient?’ She suggests that whether the patient is told explicitly or not about the terminal illness, he or she will come to this awareness independently; if the news can be transmitted in an empathetic and hopeful manner before this stage is reached, the patient will have time to work through the different reactions which will enable him or her to cope with this new situation in life, and develop confidence in carers.
Common stages It is within this context of open awareness that Kiibler Ross has identified the common stages in the process of dying: First stage: Denial and isolation The patient's first reaction to the awareness of a terminal illness may be a temporary state of shock from which he or she recuperates gradually. When the initial feeling of numbness begins to disappear, there is denial; 'no, not me, it cannot be true', or ‘there must be a mistake’. Denial, or at least partial denial, is used by most patients not only during the first stages of illness, but also later on. It is as if these people can contemplate the possibility of their own death for a defined time period, but then have to turn away from such thoughts so that they can carry on with life. Denial acts as a buffer system, allowing the patient time to develop other coping mechanisms. It is usually a temporary defence and is gradually replaced by partial acceptance. Denial can also bring isolation. The patient may fear rejection and abandonment in suffer ing and feel that no-one understands what the suffering is like. Avoidance by staff, for whatever reasons, can exacerbate this feeling of isolation in terminal illness. Second stage: Anger When the first stage of denial cannot be maintained any longer, it is replaced by feelings of anger, rage, envy and resentment. The question is 'why me?' Anger
36 Nursing Standard January 15/Volume 6/Numbcr 17 1992 Downloaded from RCNi.com by ${individualUser.displayName} on Sep 14, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
CLINICAL TERMINAL CARE The need to grieve in response to loss is very important. Repression of normal emotions can lead to an abnormal grief reaction, which may result in the bereaved suffering psychologically, physically or both.’
can be directed towards doctors, nurses, relatives, or God. There may be a feeling of irritation at everything in the vicinity, envy for the living and healthy, and anger at losing control over personal circumstances. This can be the most difficult stage for family and staff to deal with. They may react personally to the patient’s anger and respond with increasing anger, which only serves to exacerbate the patient’s hostile behaviour. Third stage: Bargaining If the patient has been unable to face the sad facts in the first stage, and has been angry at people and God in the second stage, then he or she may feel that success can only be achieved by entering into some sort of agreement which may postpone the inevitable happening. Bargaining is usually an attempt to postpone death — to be granted a little more time to live. It has to include a prize offered for ’good behaviour’; it sets a self-imposed ‘deadline’ such as the wedding of a son or daughter, or Christmas, and includes a promise that the patient will not ask for more if this postponement is granted. Most bargains are made with God and are usually kept secret or may be divulged to a particular individual, such as the cha plain, in the form of a life dedicated to God in exchange for some additional time. Fourth stage: Depression The patient can no longer deny the illness. He or she may be faced with more surgery, more hospitalisation, increasingly severe symptoms and increasing weakness. The realisation that 'yes, it is me’ dawns. Kiibler Ross describes two kinds of depression. Reactive depression is where there are expressions of fear and anxiety and a sense of great loss. This loss may take mapy forms; loss of body image (disfigurement), .loss of a job, financial difficulties and inability to continue caring for children. Preparatory depression occurs not as a result of past loss, but in taking into account impending losses. The terminally ill patient often has to undergo preparatory grief in order to prepare him or herself for final separation from the world. Fifth stage: Acceptance If the patient has had enough time (not a sudden, unexpected death) and has received some help to work through the previous stages, then he or she can reach a stage where death can be contemplated with a certain degree of quiet acceptance. It can be a stage almost void of feelings, as if pain has gone, the struggle is over and there comes a time for ‘the final rest before the long jour ney’. Kiibler Ross found that there are a few patients who fight to the end, struggle and maintain hope, and this makes it almost impossible for them to reach this final stage of acceptance with peace and dignity.
These five stages can last for different periods of time and can replace each other or coexist. Hope is the one concept which normally persists through all these stages; hope for a cure, a new drug or a miracle to happen. A glimmer of hope is necessary to help maintain the patient’s morale through the days, weeks or months of suffering. Hope is a rationalisation of suffering for some, and for others it remains a form of temporary but much needed denial. Kiibler Ross found that if a patient stopped expressing hope, it was usually a sign of imminent death.
Prejudices and convictions Dying is a major crisis which can be painfully distressing, unfamiliar and frightening (4). In order to help patients and their families through this process, nurses need to develop awareness of their own attitudes and ability to face terminal illness and death, and their particular prejudices and convictions. Meaningful communication with the dying patient, both verbal and non-verbal, is most important when trying to provide this kind of support. Finding the time to sit down by the patient demonstrates interest and concern. Listening carefully to what the patient says helps to determine what his or her emotional needs are and will encourage him or her to openly express fears and feelings of anger or depression. Providing opportunities to talk is necessary and should comprise a major focus of the nurse’s work. Some patients may wish to talk very specifically about their illness and impending death. It is important to establish the patient's understanding of the information which has been offered and to respond to requests for more information truthfully and tactfully. It may be necessary to translate information into more understandable language, to correct misunderstanding or enlarge on information. Some patients may only wish to refer to the prospect of death obliquely, and will not respond well to over-candid descriptions of current and expected developments. When the patient has reached the final stage of acceptance, interest in current events may diminish, he or she may become less talkative and non-verbal communication be comes more articulate than verbal. The nurse can support the patient by just holding hands, sitting in silence and letting him or her know that it is all right to say nothing, and giving reassurance he or she will not be left alone. Family and friends will also be deeply affected by the process of watching their loved one die. Kiibler Ross (3) suggests they
January 1 5/Volume 6/Number 17 1992 Nursing Standard 37 Downloaded from RCNi.com by ${individualUser.displayName} on Sep 14, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
CLINICAL TERMINAL CARE
References 1. Bond J, Bond S. Sociology and Health Care. Edinburgh, Churchill Livingstone. 1986. 2. Glaser B G, Strauss A L Time for Dying. Chicago, Aldin< . 1968. 3. Kiibler Ross E. On Death and Dying. London, Tavistock. 1970. 4. Walters M. The needs of the dying patient and family. Nursing. 1982. 1, 34, 1477-1478. 5. Hodgkinson M. Grief in old age. Journal of District Nursing. 1987. 1, 4, 5-6. 6. Pincus L. Death and the Family. London, Faber and Faber. 1976. 7. Hacking M. Dying and bereavement. Nursing. 1981. 27, 1168-1170. 8. Parkes C M. Bereavement: Studies of Grief in Adult Life. Harmondsworth, Penguin. 1975.
become ‘grieving families’ from the moment they realise their relative is dying (anticipa tory grief) and should be treated as such. They may experience similar emotions to those of the dying person including denial, anger, depression and finally acceptance, but not necessarily at the same time as the patient. They should be kept honestly informed of the patient’s condition; ideally, the patient and family should be encouraged to share the knowledge. Although no two people react in the same way to the death of a close relative or friend, it is recognised that there are common stages in the grieving process, similar to those identi fied in the dying process. Not everyone will pass through every stage, and the length of time taken in coming to terms with be reavement varies, depending on the signifi cance of the relationship with the dead person. The news of death is usually met with shock and disbelief, a refusal to accept the enormity of what has happened. It can find expression in physical symptoms, such as loss of appetite, insomnia, or in feelings of numbness as if feelings have been ‘turned off, a sense of isolation, being lost and indecision. This may be followed by a period of disorganisation with irrational behaviour which may be momentary or prolonged. Denial can occur throughout the whole process, leading to some bereaved people behaving, speaking and feeling as if the death has not occurred. The sad circumstances of the death itself may be denied, the meaning of the loss may be denied or the finality of death may be denied. Denial may be evident in brief spells or more prolonged periods with audi tory or visual hallucinations, experiences of seeing or hearing the deceased, which may be experienced as being either comforting or frightening (5). Pincus (6) describes a stage where there is a searching for the lost person. This may be expressed in restless behaviour, tension and a loss of interest in all that does not concern the deceased. Reactions of anger/rage are common. It can be directed against the person who has died (‘how could he leave me on my own?') or towards the hospital or its staff (who could/ should have done more) or against God and fate, or even towards a relative or other individual. The bereaved person may also have feelings of guilt, often expressed in terms of'if only’; guilt of things said or not said, done or not done. Often these are a mixture of justified and unjustified feelings (6). There may also be a period of depression
when the bereaved feel apathetic, unable to concentrate, disinclined to plan for the future and show loss of self interest and self care. There may be desolate pining a longing or yearning for the deceased, or feelings of despair, helplessness and hopelessness (5). Finally, there comes a period of resolution or acceptance, where the bereaved person comes to terms with the loss and the reali sation that life will go on. This leads to a process of reintegration - taking up a life in which the deceased plays no part. The be reaved person settles down to new circum stances and may seek new contacts or interest in work and new hobbies. The need to grieve in response to loss is very important. Repression of normal emotions can lead to an abnormal grief reaction, which may result in the bereaved suffering psycho logically, physically or both. The nurse can support the bereaved by providing the opportunity for them to talk, letting them tell all the details of the last weeks or days again and again. They need to talk, to complain, to ‘mope’, to get it off their chest, and to be listened to with patience, sympathy and empathy is enormously bene ficial (6). Listening in a communicative way is often more important than words (7).
Climate of trust The nurse can be there to provide the shoulder to cry on’ and to encourage the bereaved to express their grief by crying and by reassuring them that this is natural and desirable. It is important to create a climate of trust which enables the bereaved to express any feelings of anger and guilt they may have about having failed or harmed the deceased, or by not loving them enough. Referral to trained bereavement counsellors may be necessary if continued support over a prolonged period is required. Clubs, support groups or voluntary organi sations such as CRUSE, which provides ad vice, counselling and opportunities for social contacts, can be extremely helpful. It is important that bereaved people arcmade aware and accept that the grieving process takes time — maybe a long time, but also that it will pass. Parkes (8) calls it ‘the healing process of grief. It is accepted that there are common stages in the process of dying and bereavement that most individuals go through. With an under standing and knowledge of these processes, nurses can offer appropriate care and support to dying patients and their families at a crucial time in their lives.
38 Nursing Standard January 15/Volumc 6/Number 17 1992 Downloaded from RCNi.com by ${individualUser.displayName} on Sep 14, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
Coping with dying and bereavement Penny Parkinson RGN, NDN, is District Nursing Sister, Hope Street Clinic, Grimsby.
This article explores the likely processes which patients andfamilies undergo from the diagnosis of terminal illness to the loss ofa loved one. The author argues that only by understanding these processes can nurses hope to offer appropriate care and support to affected individuals.
Despite the growth of interest and knowledge in various aspects of death and dying, and the growth of the hospice movement in recent years, society still tends to regard death as a 'taboo' subject, one to be avoided and evaded at all costs in both personal and professional life. Discussing death is often regarded as a morbid activity with children, in particular, being excluded on the pretext that it ‘would be too much for them'. Yet, dying is a process all of us will experience, although the timing and nature of our death and the quality of our dying is infinitely variable (1). Glaser and Strauss (2) suggest that dying is a predictive term, indicating the likelihood that a person will die within a socially agreed time perspective. They have described this time perspective as the dying trajectory’. It has two characteristics: duration and 'shape', in the sense that the dying process can be represented graphically as moving staight down, moving up and down before the final descent, or moving onto a plateau for a period of time before descending. An important consideration within the process of dying is awareness of death. Glaser and Strauss define awareness as what each interacting person knows of the patient's defined status, combined with the patient’s recognition of others’ awareness of his defi nition. They identify four awareness contexts: • Closed awareness, where the patient does not recognise he or she is dying, although everyone around does. • Suspected awareness, when the patient suspects that he or she may be dying and attempts to find out what the prognosis is. • Mutual pretence awareness, when everyone knows the patient is dying but all pretend they do not. • Open awareness, where the patient, relatives and staff all admit that death is inevitable and speak and act accordingly. It is within the identification of these aware
ness contexts that interactions between patients, relatives and staff takes place and can affect the management of the dying patient. Kiibler Ross (3) favours the context of ‘open awareness’. She believes that the question is not 'do 1 tell my patient’, but 'how do 1 share this knowledge with my patient?’ She suggests that whether the patient is told explicitly or not about the terminal illness, he or she will come to this awareness independently; if the news can be transmitted in an empathetic and hopeful manner before this stage is reached, the patient will have time to work through the different reactions which will enable him or her to cope with this new situation in life, and develop confidence in carers.
Common stages It is within this context of open awareness that Kiibler Ross has identified the common stages in the process of dying: First stage: Denial and isolation The patient's first reaction to the awareness of a terminal illness may be a temporary state of shock from which he or she recuperates gradually. When the initial feeling of numbness begins to disappear, there is denial; 'no, not me, it cannot be true', or ‘there must be a mistake’. Denial, or at least partial denial, is used by most patients not only during the first stages of illness, but also later on. It is as if these people can contemplate the possibility of their own death for a defined time period, but then have to turn away from such thoughts so that they can carry on with life. Denial acts as a buffer system, allowing the patient time to develop other coping mechanisms. It is usually a temporary defence and is gradually replaced by partial acceptance. Denial can also bring isolation. The patient may fear rejection and abandonment in suffer ing and feel that no-one understands what the suffering is like. Avoidance by staff, for whatever reasons, can exacerbate this feeling of isolation in terminal illness. Second stage: Anger When the first stage of denial cannot be maintained any longer, it is replaced by feelings of anger, rage, envy and resentment. The question is 'why me?' Anger
36 Nursing Standard January 15/Volume 6/Numbcr 17 1992 Downloaded from RCNi.com by ${individualUser.displayName} on Sep 14, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
CLINICAL TERMINAL CARE The need to grieve in response to loss is very important. Repression of normal emotions can lead to an abnormal grief reaction, which may result in the bereaved suffering psychologically, physically or both.’
can be directed towards doctors, nurses, relatives, or God. There may be a feeling of irritation at everything in the vicinity, envy for the living and healthy, and anger at losing control over personal circumstances. This can be the most difficult stage for family and staff to deal with. They may react personally to the patient’s anger and respond with increasing anger, which only serves to exacerbate the patient’s hostile behaviour. Third stage: Bargaining If the patient has been unable to face the sad facts in the first stage, and has been angry at people and God in the second stage, then he or she may feel that success can only be achieved by entering into some sort of agreement which may postpone the inevitable happening. Bargaining is usually an attempt to postpone death — to be granted a little more time to live. It has to include a prize offered for ’good behaviour’; it sets a self-imposed ‘deadline’ such as the wedding of a son or daughter, or Christmas, and includes a promise that the patient will not ask for more if this postponement is granted. Most bargains are made with God and are usually kept secret or may be divulged to a particular individual, such as the cha plain, in the form of a life dedicated to God in exchange for some additional time. Fourth stage: Depression The patient can no longer deny the illness. He or she may be faced with more surgery, more hospitalisation, increasingly severe symptoms and increasing weakness. The realisation that 'yes, it is me’ dawns. Kiibler Ross describes two kinds of depression. Reactive depression is where there are expressions of fear and anxiety and a sense of great loss. This loss may take mapy forms; loss of body image (disfigurement), .loss of a job, financial difficulties and inability to continue caring for children. Preparatory depression occurs not as a result of past loss, but in taking into account impending losses. The terminally ill patient often has to undergo preparatory grief in order to prepare him or herself for final separation from the world. Fifth stage: Acceptance If the patient has had enough time (not a sudden, unexpected death) and has received some help to work through the previous stages, then he or she can reach a stage where death can be contemplated with a certain degree of quiet acceptance. It can be a stage almost void of feelings, as if pain has gone, the struggle is over and there comes a time for ‘the final rest before the long jour ney’. Kiibler Ross found that there are a few patients who fight to the end, struggle and maintain hope, and this makes it almost impossible for them to reach this final stage of acceptance with peace and dignity.
These five stages can last for different periods of time and can replace each other or coexist. Hope is the one concept which normally persists through all these stages; hope for a cure, a new drug or a miracle to happen. A glimmer of hope is necessary to help maintain the patient’s morale through the days, weeks or months of suffering. Hope is a rationalisation of suffering for some, and for others it remains a form of temporary but much needed denial. Kiibler Ross found that if a patient stopped expressing hope, it was usually a sign of imminent death.
Prejudices and convictions Dying is a major crisis which can be painfully distressing, unfamiliar and frightening (4). In order to help patients and their families through this process, nurses need to develop awareness of their own attitudes and ability to face terminal illness and death, and their particular prejudices and convictions. Meaningful communication with the dying patient, both verbal and non-verbal, is most important when trying to provide this kind of support. Finding the time to sit down by the patient demonstrates interest and concern. Listening carefully to what the patient says helps to determine what his or her emotional needs are and will encourage him or her to openly express fears and feelings of anger or depression. Providing opportunities to talk is necessary and should comprise a major focus of the nurse’s work. Some patients may wish to talk very specifically about their illness and impending death. It is important to establish the patient's understanding of the information which has been offered and to respond to requests for more information truthfully and tactfully. It may be necessary to translate information into more understandable language, to correct misunderstanding or enlarge on information. Some patients may only wish to refer to the prospect of death obliquely, and will not respond well to over-candid descriptions of current and expected developments. When the patient has reached the final stage of acceptance, interest in current events may diminish, he or she may become less talkative and non-verbal communication be comes more articulate than verbal. The nurse can support the patient by just holding hands, sitting in silence and letting him or her know that it is all right to say nothing, and giving reassurance he or she will not be left alone. Family and friends will also be deeply affected by the process of watching their loved one die. Kiibler Ross (3) suggests they
January 1 5/Volume 6/Number 17 1992 Nursing Standard 37 Downloaded from RCNi.com by ${individualUser.displayName} on Sep 14, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
CLINICAL TERMINAL CARE
References 1. Bond J, Bond S. Sociology and Health Care. Edinburgh, Churchill Livingstone. 1986. 2. Glaser B G, Strauss A L Time for Dying. Chicago, Aldin< . 1968. 3. Kiibler Ross E. On Death and Dying. London, Tavistock. 1970. 4. Walters M. The needs of the dying patient and family. Nursing. 1982. 1, 34, 1477-1478. 5. Hodgkinson M. Grief in old age. Journal of District Nursing. 1987. 1, 4, 5-6. 6. Pincus L. Death and the Family. London, Faber and Faber. 1976. 7. Hacking M. Dying and bereavement. Nursing. 1981. 27, 1168-1170. 8. Parkes C M. Bereavement: Studies of Grief in Adult Life. Harmondsworth, Penguin. 1975.
become ‘grieving families’ from the moment they realise their relative is dying (anticipa tory grief) and should be treated as such. They may experience similar emotions to those of the dying person including denial, anger, depression and finally acceptance, but not necessarily at the same time as the patient. They should be kept honestly informed of the patient’s condition; ideally, the patient and family should be encouraged to share the knowledge. Although no two people react in the same way to the death of a close relative or friend, it is recognised that there are common stages in the grieving process, similar to those identi fied in the dying process. Not everyone will pass through every stage, and the length of time taken in coming to terms with be reavement varies, depending on the signifi cance of the relationship with the dead person. The news of death is usually met with shock and disbelief, a refusal to accept the enormity of what has happened. It can find expression in physical symptoms, such as loss of appetite, insomnia, or in feelings of numbness as if feelings have been ‘turned off, a sense of isolation, being lost and indecision. This may be followed by a period of disorganisation with irrational behaviour which may be momentary or prolonged. Denial can occur throughout the whole process, leading to some bereaved people behaving, speaking and feeling as if the death has not occurred. The sad circumstances of the death itself may be denied, the meaning of the loss may be denied or the finality of death may be denied. Denial may be evident in brief spells or more prolonged periods with audi tory or visual hallucinations, experiences of seeing or hearing the deceased, which may be experienced as being either comforting or frightening (5). Pincus (6) describes a stage where there is a searching for the lost person. This may be expressed in restless behaviour, tension and a loss of interest in all that does not concern the deceased. Reactions of anger/rage are common. It can be directed against the person who has died (‘how could he leave me on my own?') or towards the hospital or its staff (who could/ should have done more) or against God and fate, or even towards a relative or other individual. The bereaved person may also have feelings of guilt, often expressed in terms of'if only’; guilt of things said or not said, done or not done. Often these are a mixture of justified and unjustified feelings (6). There may also be a period of depression
when the bereaved feel apathetic, unable to concentrate, disinclined to plan for the future and show loss of self interest and self care. There may be desolate pining a longing or yearning for the deceased, or feelings of despair, helplessness and hopelessness (5). Finally, there comes a period of resolution or acceptance, where the bereaved person comes to terms with the loss and the reali sation that life will go on. This leads to a process of reintegration - taking up a life in which the deceased plays no part. The be reaved person settles down to new circum stances and may seek new contacts or interest in work and new hobbies. The need to grieve in response to loss is very important. Repression of normal emotions can lead to an abnormal grief reaction, which may result in the bereaved suffering psycho logically, physically or both. The nurse can support the bereaved by providing the opportunity for them to talk, letting them tell all the details of the last weeks or days again and again. They need to talk, to complain, to ‘mope’, to get it off their chest, and to be listened to with patience, sympathy and empathy is enormously bene ficial (6). Listening in a communicative way is often more important than words (7).
Climate of trust The nurse can be there to provide the shoulder to cry on’ and to encourage the bereaved to express their grief by crying and by reassuring them that this is natural and desirable. It is important to create a climate of trust which enables the bereaved to express any feelings of anger and guilt they may have about having failed or harmed the deceased, or by not loving them enough. Referral to trained bereavement counsellors may be necessary if continued support over a prolonged period is required. Clubs, support groups or voluntary organi sations such as CRUSE, which provides ad vice, counselling and opportunities for social contacts, can be extremely helpful. It is important that bereaved people arcmade aware and accept that the grieving process takes time — maybe a long time, but also that it will pass. Parkes (8) calls it ‘the healing process of grief. It is accepted that there are common stages in the process of dying and bereavement that most individuals go through. With an under standing and knowledge of these processes, nurses can offer appropriate care and support to dying patients and their families at a crucial time in their lives.
38 Nursing Standard January 15/Volumc 6/Number 17 1992 Downloaded from RCNi.com by ${individualUser.displayName} on Sep 14, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
