CLINICAL ONCOLOGY
Palliative care for cancer patients Barbara Dicks explains why provision of qualityco-ordinated palliative care is essential for patients with cancer.
Figure 1. Reasons for hospital admissions in terminal illness 1. Hospitals are able to offer continuous nursing care for those who need much physical help. 2. Some techniques of pain relief, such as local radiotherapy, or neuro-surgical blocks, arc available only in hospitals. 3. The family doctor may feel that his or her specialist colleagues have more to offer, particularly if there are symptoms which defy his or her diagnostic skill. 4. The increasing proportion of elderly in our population will stretch the community and neighbourly care services. 5. An increased percentage of the elderly now live alone. 6. Those with whom the elderly do live are likely themselves to be older, and less able to care for a dying relative or friend. 7. The increased mobility of the population has reduced the likelihood of children living nearby. 8. More of the wives of married male children have full- or part-time employment. 9. It is also less common to find unmarried children with the time or suitable accommodation to nurse an elderly relative. 10. Public expectation of hospital as the appropriate place to die has increased over the years in our Western culture.
It has rightly been said that the challenge of cancer care today lies in prevention and palliation, for although significant progress has been made in the diagnosis and treatment of many cancers, approximately only one third of the six million new patients who are diagnosed each year can be cured (1). Furthermore advances in the treatment of cancer mean that many cancers are controlled for much longer. A growing number of cancer patients will therefore be able to benefit from the provision of a good quality, well co-ordinated palliative care service. The objectives of the palliative care movement are well known: to palliate the physical symptoms and the isolation, anxiety and fear associated with advanced disease, to maintain independence as long as possible and to provide as dignified a death as possible and support in bereavement. How well these aims are being achieved however is less certain (1). If the challenge of cancer care lies in prevention and palliation then the challenge of palliative care lies in good organisation. Nothing would have greater impact in this respect than acting upon what we already know. Consider for example, the situation in relation to the use of analgesics in the control of cancer pain. Analgesic drug therapy is known to be an essential component of cancer pain control and existing knowledge in this respect should mean that correctly used analgesics should be capable of controlling pain in more than 90 per cent of patients. It is staggering therefore, to note that numerous published reports indicate that cancer pain is still not treated adequately. An analysis of 1 1 reports, covering nearly 2,000 patients in developed countries, suggests that between 50 to 80 per cent of patients did not have satisfactory relief (2). The gradual expansion of palliative care services over the past 20 years has been fired by this challenge and palliative care is now well established in the United Kingdom. The 1988 Directory of Hospice Services lists over 120 independent and National Health Service units with more than 2,300 beds and over 250
24 Nursing Standard May 9/Volume 4/Number 33/1990
support teams working in the community or from hospitals (3). In practice most patients with advanced cancer spend at least some time in an oncology unit or in an ordinary ward in a general hospital and in the United Kingdom approxi mately two thirds of all patients die there (4). What should the response to this situation be? The establishment of more hospice or specia list community services? There are a number of valid reasons why this alone cannot be the solution.
Palliative hospital care Figure 1 (5) identifies some of the reasons why hospital admission is often necessary. It is crucial therefore when planning palliative care services to consider the importance of provid ing and co-ordinating the whole range of services (6). This does not necessarily only mean estab lishing a hospice unit in every town, rather it is about ensuring the availability of an appro priate range of high quality services which can be drawn upon to meet the specific needs of particular patients with advanced disease. As previously mentioned approximately two thirds of cancer patients die in hospital. There are inevitably going to be some obsta cles to the provision of good palliative care in a general hospital. For example, on a busy ward the control of difficult symptoms may be difficult to achieve. Staff may be hard-pressed to provide the necessary emotional support and there may also be a lack of privacy for patients, families and friends. As patients with advanced cancer will continue to be admitted to general hospitals, attention must be given to the environment and the facilities of general wards (7). One means of bringing the principles and benefits of palliative care to patients in hospital is through a palliative care support team. There are more than 20 such teams in the United Kingdom (3), most of which arcmultidisciplinary. One major advantage of such teams lies in
CLINICAL ONCOLOGY Barbara Dicks, BA. RGN, RM, FGTC, One Cert, is In-Patient Services Manager, the Royal Marsden Hospital, London.
Year
All deaths
At home %
Cancer death
At home
1965
549,000
38
107,000
37
1974
585,000
31
123,000
31
1983
580,000
32
134,000
32
Figure 2. Deaths at home as percentages of all, and of cancer deaths.
Figures obtained from the Registrar Generals Statistical Review (1976-1984) and rounded off to the nearest thousand.
References
the fact that they are able to bring the benefits of palliative care to patients at an earlier stage of disease than might otherwise be the case. Despite the fact that specialist services which complement the work of the primary health care team have expanded significantly over the past 20 years, statistics confirm that only one third of deaths occur at home (5). Of course the cause of death will determine, to some extent, the place of death but even in malignant disease, when death tends to be expected, the recent trend indicates a reduction in deaths at home (Figure 2). This does not belittle the significance of the evolution of community based palliative care services over the past 25 years, as a closer look at the data reveals that although deaths at home have not increased, the amount of time spent at home before death definitely has increased (5).
1. Higginson I, McCarthy M (1989) ‘Evaluation of palliative care: steps to quality assurance?’ Palliative Medicine, 267-174. 2. World Health Organization (1986) Cancer Pam Relief. Geneva, WHO. 3. Directory of Hospice Services in the UK and Republic of Ireland (1988) Hospice Information Service, St Christopher's Hospice, London. 4. World Health Organization (1889)Palliative Cancer Care Geneva WHO 5. Spilling R (1986) Terminal Care at Home Oxford Medical Publications. 6. Department of Health and Social Security (1987) ‘Health service development, terminal care’. London, DHSS HC/87/4. 7. King Edward’s Hospital Fund for London/National Association of Health Authorities (1987) Care of the Dying: A Guide to Health Authorities, Birmingham. London, NAHA. 8. Clench P (1984) Managing to Care. London, Patten Press. 9. Goldstonc L A, et al (1983) Monitor: an index of the quality of nursing care for acute medical and surgical wards 2nd edition. Newcastle-upon-Tyne Polytechnic Products.
Specialist symptom control The basis of palliative care in the community is the provision of specialist advice to the primary health care team concerning the principles of symptom control coupled with the provision of psychological support for both patients and families. Community-based palliative care services have been spearheaded by the clinical nurse specialist in terminal care. It is doubtful whether or not this development would have become the focus of such attention had this model not been adopted by Cancer Relief Macmillan Fund as an immediate and eco nomical means of bringing support to a large number of patients (8). Hospices and palliative care units Even though only a small proportion of deaths occur in a hospice unit, hospices have influ enced many colleagues in the National Health Service. Furthermore although the proliferation of palliative care units cannot be the only response to meeting the demand for service provision, they will continue to play an invaluable role as centres for clinical research in symptom control and provide opportunities
for the education and training for health care professionals. A few hospitals have designated a particular ward for palliative care. The location of units such as these offers an excellent opportunity for the improvement of standards of care in the hospital as a whole and also allows the palliative care team to function on the basis of shared care of patients at an earlier stage of their illness (4). Day care The growing emphasis upon care in the community has been a significant factor in the development of day care as a component of palliative care service provision. A growing number of palliative care units and hospitals are now providing day care facilities. Day care is of particular value for patients who are not ill enough for admission to a hospital/palliative care unit but who need more than community care support. Not only can day care provide an opportunity to moni tor symptom control but it can also provide opportunities for rehabilitation and respite care. Planning of services As with so much health care, palliative care services have evolved in an unco-ordinated manner (4). The Department of Health has stressed the importance of proper planning in this respect (6) but this will only occur as health authorities, volun tary bodies and charitable organisations colla borate to develop a comprehensive range of services. Quality assurance A selective review of the British and North American evaluations of palliative care indicates that hospice care is not worse than conventional care, and in some special centres is better (1). However no specific quality assurance tool has been developed to assess the quality of palliative nursing care. A project is underway which is working on an adaptation of Monitor, an index of the quality of nursing care for acute medical and surgical wards (9). This will hopefully provide nurses with a tailor made assessment tool which can be used to move palliative care evaluation towards quality assurance. May 9/Volume 4/Number 33/1990 Nursing Standard 25
Palliative care for cancer patients Barbara Dicks explains why provision of qualityco-ordinated palliative care is essential for patients with cancer.
Figure 1. Reasons for hospital admissions in terminal illness 1. Hospitals are able to offer continuous nursing care for those who need much physical help. 2. Some techniques of pain relief, such as local radiotherapy, or neuro-surgical blocks, arc available only in hospitals. 3. The family doctor may feel that his or her specialist colleagues have more to offer, particularly if there are symptoms which defy his or her diagnostic skill. 4. The increasing proportion of elderly in our population will stretch the community and neighbourly care services. 5. An increased percentage of the elderly now live alone. 6. Those with whom the elderly do live are likely themselves to be older, and less able to care for a dying relative or friend. 7. The increased mobility of the population has reduced the likelihood of children living nearby. 8. More of the wives of married male children have full- or part-time employment. 9. It is also less common to find unmarried children with the time or suitable accommodation to nurse an elderly relative. 10. Public expectation of hospital as the appropriate place to die has increased over the years in our Western culture.
It has rightly been said that the challenge of cancer care today lies in prevention and palliation, for although significant progress has been made in the diagnosis and treatment of many cancers, approximately only one third of the six million new patients who are diagnosed each year can be cured (1). Furthermore advances in the treatment of cancer mean that many cancers are controlled for much longer. A growing number of cancer patients will therefore be able to benefit from the provision of a good quality, well co-ordinated palliative care service. The objectives of the palliative care movement are well known: to palliate the physical symptoms and the isolation, anxiety and fear associated with advanced disease, to maintain independence as long as possible and to provide as dignified a death as possible and support in bereavement. How well these aims are being achieved however is less certain (1). If the challenge of cancer care lies in prevention and palliation then the challenge of palliative care lies in good organisation. Nothing would have greater impact in this respect than acting upon what we already know. Consider for example, the situation in relation to the use of analgesics in the control of cancer pain. Analgesic drug therapy is known to be an essential component of cancer pain control and existing knowledge in this respect should mean that correctly used analgesics should be capable of controlling pain in more than 90 per cent of patients. It is staggering therefore, to note that numerous published reports indicate that cancer pain is still not treated adequately. An analysis of 1 1 reports, covering nearly 2,000 patients in developed countries, suggests that between 50 to 80 per cent of patients did not have satisfactory relief (2). The gradual expansion of palliative care services over the past 20 years has been fired by this challenge and palliative care is now well established in the United Kingdom. The 1988 Directory of Hospice Services lists over 120 independent and National Health Service units with more than 2,300 beds and over 250
24 Nursing Standard May 9/Volume 4/Number 33/1990
support teams working in the community or from hospitals (3). In practice most patients with advanced cancer spend at least some time in an oncology unit or in an ordinary ward in a general hospital and in the United Kingdom approxi mately two thirds of all patients die there (4). What should the response to this situation be? The establishment of more hospice or specia list community services? There are a number of valid reasons why this alone cannot be the solution.
Palliative hospital care Figure 1 (5) identifies some of the reasons why hospital admission is often necessary. It is crucial therefore when planning palliative care services to consider the importance of provid ing and co-ordinating the whole range of services (6). This does not necessarily only mean estab lishing a hospice unit in every town, rather it is about ensuring the availability of an appro priate range of high quality services which can be drawn upon to meet the specific needs of particular patients with advanced disease. As previously mentioned approximately two thirds of cancer patients die in hospital. There are inevitably going to be some obsta cles to the provision of good palliative care in a general hospital. For example, on a busy ward the control of difficult symptoms may be difficult to achieve. Staff may be hard-pressed to provide the necessary emotional support and there may also be a lack of privacy for patients, families and friends. As patients with advanced cancer will continue to be admitted to general hospitals, attention must be given to the environment and the facilities of general wards (7). One means of bringing the principles and benefits of palliative care to patients in hospital is through a palliative care support team. There are more than 20 such teams in the United Kingdom (3), most of which arcmultidisciplinary. One major advantage of such teams lies in
CLINICAL ONCOLOGY Barbara Dicks, BA. RGN, RM, FGTC, One Cert, is In-Patient Services Manager, the Royal Marsden Hospital, London.
Year
All deaths
At home %
Cancer death
At home
1965
549,000
38
107,000
37
1974
585,000
31
123,000
31
1983
580,000
32
134,000
32
Figure 2. Deaths at home as percentages of all, and of cancer deaths.
Figures obtained from the Registrar Generals Statistical Review (1976-1984) and rounded off to the nearest thousand.
References
the fact that they are able to bring the benefits of palliative care to patients at an earlier stage of disease than might otherwise be the case. Despite the fact that specialist services which complement the work of the primary health care team have expanded significantly over the past 20 years, statistics confirm that only one third of deaths occur at home (5). Of course the cause of death will determine, to some extent, the place of death but even in malignant disease, when death tends to be expected, the recent trend indicates a reduction in deaths at home (Figure 2). This does not belittle the significance of the evolution of community based palliative care services over the past 25 years, as a closer look at the data reveals that although deaths at home have not increased, the amount of time spent at home before death definitely has increased (5).
1. Higginson I, McCarthy M (1989) ‘Evaluation of palliative care: steps to quality assurance?’ Palliative Medicine, 267-174. 2. World Health Organization (1986) Cancer Pam Relief. Geneva, WHO. 3. Directory of Hospice Services in the UK and Republic of Ireland (1988) Hospice Information Service, St Christopher's Hospice, London. 4. World Health Organization (1889)Palliative Cancer Care Geneva WHO 5. Spilling R (1986) Terminal Care at Home Oxford Medical Publications. 6. Department of Health and Social Security (1987) ‘Health service development, terminal care’. London, DHSS HC/87/4. 7. King Edward’s Hospital Fund for London/National Association of Health Authorities (1987) Care of the Dying: A Guide to Health Authorities, Birmingham. London, NAHA. 8. Clench P (1984) Managing to Care. London, Patten Press. 9. Goldstonc L A, et al (1983) Monitor: an index of the quality of nursing care for acute medical and surgical wards 2nd edition. Newcastle-upon-Tyne Polytechnic Products.
Specialist symptom control The basis of palliative care in the community is the provision of specialist advice to the primary health care team concerning the principles of symptom control coupled with the provision of psychological support for both patients and families. Community-based palliative care services have been spearheaded by the clinical nurse specialist in terminal care. It is doubtful whether or not this development would have become the focus of such attention had this model not been adopted by Cancer Relief Macmillan Fund as an immediate and eco nomical means of bringing support to a large number of patients (8). Hospices and palliative care units Even though only a small proportion of deaths occur in a hospice unit, hospices have influ enced many colleagues in the National Health Service. Furthermore although the proliferation of palliative care units cannot be the only response to meeting the demand for service provision, they will continue to play an invaluable role as centres for clinical research in symptom control and provide opportunities
for the education and training for health care professionals. A few hospitals have designated a particular ward for palliative care. The location of units such as these offers an excellent opportunity for the improvement of standards of care in the hospital as a whole and also allows the palliative care team to function on the basis of shared care of patients at an earlier stage of their illness (4). Day care The growing emphasis upon care in the community has been a significant factor in the development of day care as a component of palliative care service provision. A growing number of palliative care units and hospitals are now providing day care facilities. Day care is of particular value for patients who are not ill enough for admission to a hospital/palliative care unit but who need more than community care support. Not only can day care provide an opportunity to moni tor symptom control but it can also provide opportunities for rehabilitation and respite care. Planning of services As with so much health care, palliative care services have evolved in an unco-ordinated manner (4). The Department of Health has stressed the importance of proper planning in this respect (6) but this will only occur as health authorities, volun tary bodies and charitable organisations colla borate to develop a comprehensive range of services. Quality assurance A selective review of the British and North American evaluations of palliative care indicates that hospice care is not worse than conventional care, and in some special centres is better (1). However no specific quality assurance tool has been developed to assess the quality of palliative nursing care. A project is underway which is working on an adaptation of Monitor, an index of the quality of nursing care for acute medical and surgical wards (9). This will hopefully provide nurses with a tailor made assessment tool which can be used to move palliative care evaluation towards quality assurance. May 9/Volume 4/Number 33/1990 Nursing Standard 25
