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J Clin Ephkmiol Vol. 45, No. 12, pp. 1447-1449, 1992 F’rintcdin Great Britain. All rights mewed
Copyright 0 1992Pcrgamon PlBs Ltd
Second Thoughts PALLIATIVE
CARE IN NON-CANCER PATIENTS THE NEGLECTED CAREGIVER
RowBR CHARLTON Criffel,
Dalbury Lees, DerbyshireDE65BE, England (Received h revisedform 15 July 1992)
Abstract-Diseases other than cancer can be progressive and have a terminal phase and many of the philosophies of palliative care are applicable. The case studies emphasize two types of palliation. First, for the patient and that is well recognized and second, palliation for the caregiver which should include provision of respite care. Palliation disease
INTRODUCEION Palliative care is applicable to conditions other than cancer and these include several serious chronic, but progressive illnesses, such as terminal cardiac failure, chronic obstructive airways disease (COAD) and multiple sclerosis. Such conditions, because they are not cancer, do not fit the “provision of care criteria”, offered by some hospices with regard to day care. These patients require recognition that their conditions may enter a stage of terminal illness. Furthermore, because of the duration of such conditions, attention should be devoted to the caregivers and the stress and suffering they experience. The following case studies illustrate the principles of palliation applicable not only to non-cancer patients, but their caregivers as well.
CASE STUDY 1
Mr P was a 59 year old man whom I first came to know 2 years prior to his death. His wife called me one Sunday morning to see him at home, because he had developed another
episode of wheezy bronchitis. On this occasion, following appropriate treatment, I suggested referral to a specialist because of the increasing frequency of attacks. A neoplasm was excluded and a diagnosis of COAD confirmed. This was fully explained to the patient and that he should continue the supportive regime of regular nebulized steroids and have antibiotics and oral steroids for exacerbations. Over the next 2 years his condition necessitated repeated hospital admissions. Gradually his pulmonary function deteriorated to such an extent that it became necessary to install an oxygen generator in his house. He was too weak to get out of bed and for 12 months prior to his death he required full nursing care from his devoted wife. Despite all this he remained remarkably cheerful to the end. He was visited twice a week for review, adjustments of medication and psychological support. The district nurse and physiotherapist also visited regularly. The general practitioner (GP) got to know Mrs P very well. During their conversations she would be tearful and have her arm around her husband. She said she would do anything as long as she could keep him alive. She would tell
the GP how tired she felt, but that her wish to keep him alive “kept her going”. Visits by the GP became more regular during his last 6 months and he became entirely dependent on his wife. He continued his work, as a car dealer, from his bedside on the telephone and this was a great support to him. During exacerbations in the last 6 months he refused hospital admission, as he so detested going there and having the various investigations, including blood gases performed. On one occasion hospital admission was necessary to provide his wife with a break, with which he reluctantly agreed. Prior to this she was almost at breaking point and the rest strengthened her both physically and psychologically. During his last few days, he did not deteriorate physically, but became very low in spirits and gave up the “will to live”. He died peacefully with his family present. When the end came his wife could not believe it. After I certified him dead, she held him, shouting and crying for half an hour for him to come back. She required weeks of counselling to dissuade her from fulfilling her wish to join him. Despite the regular input from the community team, this situation would perhaps have been made easier for Mrs P, if day care (a form of organized respite) had been provided. One day a week could have given her a rest, time to herself and time to think. Unfortunately, no such facility existed. Mrs P’s grief reaction did not come as a surprise to the GP. Her husband had outlived all the doctor’s expectations and predictions. This and the intensity of her daily routine for 2 years made his eventual death almost unreal for Mrs P. The stress for caregivers, whether professional or lay, is immense. A spouse like Mrs P will suffer as much as the patient and provision for a break or a time away from the bedside is essential. Omission of this need may not allow the caregiver the time necessary to pass through all the personal stages of grief and so come to terms with the prognosis of their loved one. CASE STUDY 2
Mr J was a 75 year man who had severe heart valve disease with resultant congestive cardiac failure. He had been seen twice by a local cardiologist who felt surgery was too risky. His main symptoms were of tiredness, dyspnoea,
walking round the house and poor appetite associated with continuous nausea. For 18 months he entered phases of what appeared to be terminal cardiac failure which would last 3 to 4 weeks. He suffered three of these episodes, the last of which he succumbed to. During these episodes he would lie upright in bed because of sheer fatigue, unable to get to the toilet without assistance. On the first two occasions he asked for hospital admission. He was a man of great wit and intellect, which his illness never affected. His wife however, was under an obvious degree of strain looking after him continuously with little support. Sometimes she would be weepy and describe how tired she was. On occasions it was necessary to tell Mr J this and that it would be best to organize one of their children to stay the night so she could get some sleep. During each visit, attention was paid to her health, as she suffered with hypertension, so that she did not feel neglected. However, it was obvious she desperately wanted to talk, but Mr J preferred all such conversations to be in his presence. She had no car and she did not like to leave him for long periods in case he needed her. It was possible to see how much she was suffering and how the weekly provision of a few hours respite care would have helped her. At the onset of the third episode of terminal cardiac failure he opted for palliation at home. The GP’s concern was then alerted because Mr J was talking about what would happen when he died and whether or not he would know. His wife reported that he appeared very depressed and even the doctor’s visits now brought him little cheer. A few days after our conversation, he asked his wife to get him a drink. When she returned, she found him asleep. She calmly phoned the GP. He came and certified that Mr J was dead and had died peacefully. Many months later his wife said, “My grief is far greater than I thought could be possible”. This was not entirely unexpected and emphasized how the caregiver can suffer and be neglected. Palliation for Mr J concentrated very much on counselling him and helping him come to terms with his illness. With respite care and so provision of time, Mrs J could have gone through the same process. Unfortunately, the duration and intensity of this personal caregiving relationship gave her great pain as she had only just started to grieve.
Second Thoughts DI!XU!3SION
Principles of palliative medicine are not confined to cancer patients. The pattern of symptoms and restrictions in cancer suggests an illness which has a relatively short but intense period of suffering and dependency, compared to the longer duration of these periods in average non-cancer deaths [l]. In those who do not have cancer, the diagnosis of dying is more difhcult and so the communication of important issues is less clear-cut. In comparison with cancer patients, these patients did not suffer pain to the same degree, but rather dyspnoea and immobility. Their greatest needs were the provision of support through regular contact and adequate communication. This and adequate symptom control comprise two of the most important philosophies of palliative care. However, they should not be exclusively applied to the patient, but to the caregiver as well. The case studies illustrate how important this is. To achieve this, both patient and caregiver alike would have benefitted from organized respite care one day each week. It is helpful for the patient to be freed of the home environment, which for some can become like a prison . It is helpful too if he or she can meet with others in a similar predicament and also to talk to trained staff. The definition of a caregiver is someone whose life is restricted, by the need to take responsibility for the care of another person .
It is vital therefore that he or she has the provision for a break or respite so that they can attend to their own needs and move through the important grieving process. Bereavement in these cases was very painful because of the long period of care and its intimate nature which allowed the relationship of the caregiver and patient to grow even more deeply. In both these cases, neither caregiver was prepared for the death. This was because of the deepening personal relationship and that each patient had outlived both the doctor’s and caregiver’s expectations. Thus, the tinal shock of the death and separation was tremendous and support was needed to initiate grieving which could have taken place with counselling during periods of organized respite. As medical technology develops, the number of patients with prolonged chronic illnesses will increase and so will the number of untrained caregivers. The need to apply philosophies of palliative care in such conditions to prevent suffering and so improve quality of life is important, to meet both the needs of patients and their caregivers. REFERENCES Seale C. Death from cancer and death from other causes: the relevance of the hospice approach. Palliative Med 1991; 5: 12-19. Moreland C. Disabilities and How to live with them: Teratoma of the testis. Lmcet 1982; ii: 203-205. Pitkeathley J. Who will care in the 21st century? RSA J 1991; 139: 711-724.