Showing papers in "Palliative Medicine in 1995"
TL;DR: The importance of measuring the existential domain is highlighted by the finding that, of all the MQOL subscales and Spitzer items, only the meaningful existence subscale correlated significantly with a single item scale rating overall quality of life.
Abstract: This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the existential domain is measured; the physical domain is important but not predominant; positive contributions to quality of life are measured. This study was conducted in a palliative care setting. Principal components analysis suggests four subscales: physical symptoms, psychological symptoms, outlook on life, and meaningful existence. Construct validity of the subscales is demonstrated through the pattern of correlations with the items from the Spitzer Quality of Life Index. The importance of measuring the existential domain is highlighted by the finding that, of all the MQOL subscales and Spitzer items, only the meaningful existence subscale correlated significantly with a single item scale rating overall quality of life.
701 citations
TL;DR: There is still some way to go before all dying cancer patients receive high quality care, and education in the principles of palliative care is needed at all levels of the NHS if high standards are to be reached.
Abstract: Objective: To describe the quality of care received in the last year of life by people who die from cancer, focusing particularly on symptom control, communication with health professionals, and ca...
303 citations
TL;DR: Staff stress and burnout in hospice/palliative care has been demonstrated to be less than in professionals in many other settings, however, other studies have noted suicidal ideation, increased alcohol and drug usage, anxiety, depression, and difficulty in dealing with issues of death and dying.
Abstract: A review of the research in the area of staff stress in hospice/palliative care since the start of the modern hospice movement shows that, while high stress was identified as a problem in the early days of the movement, later studies have shown that stress and burnout in palliative care are by no means universal. Staff stress and burnout in hospice/palliative care has been demonstrated to be less than in professionals in many other settings. However, other studies have noted suicidal ideation, increased alcohol and drug usage, anxiety, depression, and difficulty in dealing with issues of death and dying. It is hypothesized that part of the reason that stress may be lower than expected in some settings was the early recognition of the potential stress inherent in this field and the development of appropriate organizational and personal coping strategies to deal with the identified stressors. Staff in hospice/palliative care have been found to have increased stress when mechanisms such as social support, involvement in work and decision-making, and a realistic work-load are not available. The stress that exists in palliative care is due in large measure to organizational and societal issues, although personal variables were also found to have an influence. Suggestions are given for the direction of future research in the field.
240 citations
TL;DR: The survey has been successful, both in providing districts with information on local services, and in obtaining a large, broadly representative, sample of deaths, thus enabling many outstanding questions about the needs of dying patients and their families, and about appropriate service provision, to be addressed.
Abstract: The Regional Study of Care for the Dying (RSCD) was established in 1990 with the dual aims of providing district health authorities with an audit of local services for the dying, and of addressing questions about experiences of people dying from cancer, effectiveness of hospice care, and needs of, and appropriate service provision for, people dying from causes other than cancer. The survey methods are described in this paper, together with the characteristics and representativeness of the sample.An interview survey was conducted of family or others who knew about the last year of life of a random sample of people who died in 1990. It was based upon methods used in nationally representative surveys by Cartwright in 1969, and Cartwright and Seale in 1987.The setting was 20 district health authorities, who paid for local data collection.Approximately 270 deaths were randomly sampled in each district: 5375 deaths were sampled in total. As cancer patients are the focus of most services for the dying, cancer deaths were sampled disproportionately (54%).Interviews were obtained for 69% (3696) of the sample. The response rate varied significantly by cause of death, age and social class of deceased, and the degree of deprivation of the district. There were small, but statistically significant, differences in cause of death and age between those deaths for whom interviews were obtained and national figures for deaths occurring in 1990.The discussion addresses key issues in the study, including responses from ethical committees, response rate and quality of data. The survey has been successful, both in providing districts with information on local services, and in obtaining a large, broadly representative, sample of deaths, thus enabling many outstanding questions about the needs of dying patients and their families, and about appropriate service provision, to be addressed.
186 citations
TL;DR: It is shown that a hospital palliative care team is effective at improving symptom control, facilitates understanding of the diagnosis and prognosis, and contributes to the appropriate placement of patients.
Abstract: A prospective study was carried out of 125 hospital inpatients with malignant disease, referred to the King's College Hospital advisory palliative care team. A palliative care assessment (PACA) tool was developed in order to assess the outcome of interventions made within two weeks of referral with regard to: symptom control, change in the patients' and their relatives' insight regarding diagnosis and prognosis, and facilitation of patient placement. Reliability was assessed by cross-observer analysis, and validity by comparison with data obtained using the McCorckle symptom distress scale in a separate group of hospice inpatients. At initial assessment, the commonest symptom was pain, as reported by 74% of patients. One-third of the patients were unsure of their diagnosis and placement had not been decided in 61%. In total, the team undertook 245 pharmacological interventions for symptom control, 165 interventions regarding insight and 114 interventions concerning placement. Analysis of the data showed statistically significant improvements in pain (p < 0.001), nausea (p < 0.009), insomnia (p < 0.004), anorexia (p < 0.001) and constipation (p < 0.02). Discussion regarding diagnosis significantly changed the insight of patients (p < 0.001) and relatives (p < 0.02). Appropriate placement was assisted by interventions undertaken by the team. This study shows that a hospital palliative care team is effective at improving symptom control, facilitates understanding of the diagnosis and prognosis, and contributes to the appropriate placement of patients.
152 citations
TL;DR: No statistically significant differences were found between the reports of patients or carers regarding the patients' activities of daily living, their physical symptoms, or the evaluations of the care they received in the month prior to their admission to an inpatient hospice.
Abstract: This paper examines the responses of 28 terminally ill patients and their lay carers to identical questions about the patients' experiences in the month prior to their admission to an inpatient hospice. No statistically significant differences were found between the reports of patients or carers regarding the patients' activities of daily living, their physical symptoms, or the evaluations of the care they received. Discrepancies between accounts were most likely to concern the presence or absence of psychological symptoms, the degree of distress caused to patients by their symptoms, and the main symptoms experienced by the patient on their admission to the hospice. It is suggested that the accounts of patients' experiences given by their carers can be used as a valid source of information.
84 citations
TL;DR: It is concluded that transfusion does offer symptom relief and improvement in well-being in patients with advanced malignant disease and should be considered as a worthwhile option in palliative treatment of weakness, dyspnoea and impaired overall sense ofwell-being, when associated with anaemia.
Abstract: The value of blood transfusion as a supportive treatment in haematological disease and oncology is well established and is seen as an essential part of treatment. The place of blood transfusion in the alleviation of symptoms within palliative care units is less well established. There has been no evaluation of its benefits in terms of symptom relief and impact on the quality of life. This study was designed to identify the benefit achieved by transfusion as well as possible indicators for its appropriate use in the future. Ninety-seven patients were recruited over one year, from the beginning of September 1992 to the end of August 1993, from eight centres, all members of the South West Thames Palliative Medicine Collaborative Audit Group. Patients completed visual analogue scales before and on two occasions after transfusion, to assess its impact on dyspnoea, weakness and overall sense of well-being. Results indicated that a significant proportion showed improvement in all three parameters. Those whose main indication for transfusion was weakness showed a particular benefit. The group of patients entered into the study were anaemic in comparison with our normal patient population, but the degree of improvement seen did not correlate with the degree of anaemia prior to transfusion. We conclude that transfusion does offer symptom relief and improvement in well-being in patients with advanced malignant disease. It should be considered as a worthwhile option in palliative treatment of weakness, dyspnoea and impaired overall sense of well-being, when associated with anaemia.
83 citations
TL;DR: This study describes the 127 children with neurodegenerative disease who were admitted to Helen House, a hospice for children, from the time of opening in November 1982 until the end of 1993.
Abstract: Little is written on the management of problems encountered by children with neurodegenerative disease. Whilst the conditions are individually rare, as a group of diseases they pose a considerable burden on the child, the family and the community. This study describes the 127 children with neurodegenerative disease who were admitted to Helen House, a hospice for children, from the time of opening in November 1982 until the end of 1993. The great majority of the conditions were genetic in origin and nearly one-third of the families had had two or more children with the same disease. Seventy-four (58%) of the children have died, with nearly half dying at home. The course of the disease was in many cases chronic and these children presented with multiple medical and nursing problems. Examination of the problems recorded in 1993 revealed that nearly all the children had no speech, or speech was impaired. Most were either totally immobile or had considerably reduced mobility. Seventy per cent of the children had feeding problems and one-quarter were fed through a nasogastric tube or gastrostomy. Thirty-five per cent of the children suffered pain on occasions, with muscle spasm being the main identifiable source of pain. Practical suggestions are made for the management of these children.
66 citations
TL;DR: This paper examines recent research in palliative care in the light of the guiding principles set out by the World Health Organization, and outlines the gaps in the literature and suggests priorities for future research.
Abstract: This paper examines recent research in palliative care in the light of the guiding principles set out by the World Health Organization. It outlines the gaps in the literature and suggests priorities for future research. Areas of unmet need are documented and it is argued that research comparing outcomes across care settings and relating particular care practices to outcome measures would help to set care targets. Further definition of the expected outcomes of psychological and spiritual care, as well as care for carers, is recommended. Available measures are reviewed and suggestions made for the development of additional measures. Finally, some key methodological problems are discussed, including making cross-setting comparisons, identifying appropriate outcome measures, prioritizing patients' own identification of outcomes, using different methodologies as death approaches, and combining different perspectives offered by patients, lay carers and professional carers. The role of qualitative data as an indicator of rating scale validity is discussed in this context.
62 citations
TL;DR: Comment on the article by Louise de Raeve, which argues from both a Kantian and a risk/benefit perspective that ’strong moral grounds exist for objecting to research in the field of palliative care’.
Abstract: We wish to comment on the article by Ms Louise de Raeve, entitled ’Ethical issues in palliative care research’.1 Ms de Raeve argues from both a Kantian and a risk/benefit perspective that ’strong moral grounds exist for objecting to research in the field of palliative care’. In the closing lines of the paper, she comments that she has been ’deliberately provocative’ because her concern is that ’there is inadequate moral scrutiny of the process’ in palliative care research. A key point in Ms de Raeve’s argument is that the dying represent a special client class. She observes:
TL;DR: A review of the literature gives conflicting reports of the physical discomfort that may be attributed to dehydration in dying patients and the ethical dilemmas of withholding and withdrawing medical treatment in addition to those of conducting research in this area are discussed.
Abstract: Patients who are in the last few days of life are often too frail to take oral fluids and nutrition. This may be due entirely to the natural history of their disease, although the use of sedative drugs for symptom relief may contribute to a reduced level of consciousness and thus a reduced oral intake. Rehydration with intravenous (i.v.) fluids is the usual response in acute care settings, whereas the hospice movement has often argued against this approach. The issues are complex and involve not only physical, psychological and social concerns, but also ethical dilemmas. A review of the literature gives conflicting reports of the physical discomfort that may be attributed to dehydration in dying patients. There are many confounding variables, including the concomitant use of antisecretory drugs, mouth breathing and oral infection. It remains unproven whether i.v. fluids offer symptomatic relief in this situation. Hospice doctors are concerned that the use of i.v. fluids gives confusing messages to relatives about the role of medical intervention at this stage in a patient's illness. A drip may cause a physical barrier between a patient and their loved one at this important time. The use of other methods of fluid replacement are discussed. In the absence of definitive research in this area, the balance of the burdens and benefits of such treatment remains subjective. The prime goal of any treatment in terminal care should be the comfort of the patient. Decisions should be made on an individual basis, involving both patients and their carers wherever possible. Prolonging life in such circumstances is of secondary concern and i.v. fluids given in this context may be futile. The ethical dilemmas of withholding and withdrawing medical treatment in addition to those of conducting research in this area are discussed.
TL;DR: A sense of isolation and a lack of postbasic education opportunities for nurses outside the NHS are uncovered, which has major implications for the educational activities of palliative care teams.
Abstract: Nurses working in private nursing homes may not have the same degree of access to support and education in palliative care as nurses in NHS 'care of the elderly' wards. A study was conducted comparing two groups of nurses working in these two environments in one health district. Twenty-four nurses underwent semistructured interviews focusing on pain management. Both groups showed equal enthusiasm for their work with elderly patients. However, those from the care of the elderly wards were able to offer many more treatment strategies to relieve pain than their colleagues from the private nursing homes. The study uncovered a sense of isolation and a lack of postbasic education opportunities for nurses outside the NHS. If this small local study reflects a national trend, then there are major implications for the educational activities of palliative care teams.
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TL;DR: The surviving twin often suffers profoundly from the loss and may need lifelong support, and the value of the twinship should always be respected.
Abstract: Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the live and the dead baby, and the constant reminder in the survivor may be painful. The surviving twin often suffers profoundly from the loss and may need lifelong support. The value of the twinship should always be respected.
TL;DR: This survey challenges the popular impression that patients receiving SPC require large doses of morphine, and finds the highest prevalence of potent opioid prescribing was in hospice IPUs, largely owing to the use of parenteral diamorphine.
Abstract: A study was conducted to determine the patterns of opioid use in patients under the care of specialist palliative care (SPC) teams in Trent Region, both in the community and in inpatient settings. ...
TL;DR: Criteria for choosing one NSAID over another, including adverse effect profiles, efficacy and tolerability, are considered, as are methods for improving the safe use of these drugs.
Abstract: Nonsteroidal anti-inflammatory drugs (NSAIDs) are widely used in cancer, yet they are also responsible for many, often serious, adverse effects. This review examines the various mechanisms through which NSAIDs work. It looks at the experience built up in using NSAIDs in cancer pain in general, but then particularly examines whether the evidence available supports the claim often made that these drugs have a specific role in relief of pain from bony metastases. Criteria for choosing one NSAID over another, including adverse effect profiles, efficacy and tolerability, are considered, as are methods for improving the safe use of these drugs.
TL;DR: A survey of 108 palliative care nurses practising in New South Wales, Australia, was undertaken to explore their professional needs and clinical knowledge and revealed a need for additional training.
Abstract: A survey of 108 palliative care nurses practising in New South Wales, Australia, was undertaken to explore their professional needs and clinical knowledge. Opportunity for improved training was the most frequently nominated professional need. Only 12% of the sample had postgraduate qualifications in palliative care and fewer than 20% were currently undertaking postgraduate training. Sixty-three per cent of nurses indicated that a lack of opportunity for formal study was a problem for them. The results of the knowledge survey revealed a need for additional training. Many nurses did not have the clinical knowledge identified as minimal by an expert committee. Those nurses who had a postgraduate qualification in oncology scored more highly on the knowledge questionnaire than did those whose general nursing training was undertaken outside Australia. The implications of these findings for training and other professional support are discussed.
TL;DR: This paper looks at various approaches to terminal care in children and describes the model of care for such children in the south west of the United Kingdom and key elements of an effective service are identified.
Abstract: Two-thirds of children with cancer are now cured of their disease. For the majority of the remainder there is a period of terminal care. The emphasis of care at this stage is on the quality of life for both child and family. Most families prefer that their child should be cared for at home, with professional support from those known to them. This paper looks at various approaches to terminal care in children and describes the model of care for such children in the south west of the United Kingdom. From this information, key elements of an effective service are identified.
TL;DR: Assessment of south London general practitioners' views on the role of specialist home care teams and their working patterns found most thought a 24-hour on-call and visiting service desirable, and wanted to share out-of-hours care with the teams.
Abstract: This study aimed to assess south London general practitioners' views on the role of specialist home care teams and their working patterns, particularly involvement in out-of-hours care In February 1992, postal questionnaires were sent to the 705 general practitioners working in three adjacent FHSA areas The response rate was 79% There was approval of the teams' current role and of extending this to include patients with nonmalignant disease Most thought a 24-hour on-call and visiting service desirable, and wanted to share out-of-hours care with the teams The implications of changing and extending the role of specialist teams and the issue of providing adequate out-of-hours care for patients wishing to remain at home are discussed
TL;DR: The drug treatment of dyspnoea has been disappointing, but close attention to psychosocial aspects can improve mobility and control and the place of long-term oxygen therapy in chronic lung conditions is discussed.
Abstract: Prognosis in severe chronic obstructive pulmonary disease is poor, and it is increasingly accepted that such patients need good palliative care. This paper reviews the medical management of chronic obstructive pulmonary disease, and also discusses the place of long-term oxygen therapy. A multidisciplinary programme termed 'pulmonary rehabilitation' is being used increasingly, and, although this probably does not improve survival, there is evidence that it increases quality of life. The drug treatment of dyspnoea has been disappointing, but close attention to psychosocial aspects can improve mobility and control. The place of palliation in a number of other chronic lung conditions is also mentioned.
TL;DR: The results of a survey that attempted to estimate the number of non cancer patients requiring inpatient palliative care in the Thames Valley area suggest that about 11 noncancer patients per practice per year were in need of respite or continuing care.
Abstract: Inpatient facilities in palliative care units are generally considered to be mainly for cancer patients. We present and discuss the results of a survey that attempted to estimate the number of nonc...
TL;DR: A retrospective review of all children dying from cancer under the care of the symptom care team at the Royal Marsden Hospital between 1982 and 1993 shows that respiratory symptoms were recorded during the last three months of life in 40% of analysable case histories.
Abstract: Shortness of breath and other respiratory symptoms frequently complicate the symptomatic management of terminally ill adults. The extent of the problem in children is not known, but anecdotal evidence from nurses and physicians experienced in paediatric oncology has suggested that respiratory problems are less frequent in children dying from malignant disease than in adults. This is a retrospective review of all children dying from cancer under the care of the symptom care team at the Royal Marsden Hospital between 1982 and 1993. The results show that respiratory symptoms were recorded during the last three months of life in 40% of analysable case histories. The nature of respiratory symptoms in paediatric cancer patients is discussed.
TL;DR: The experience of the use of TCAE in the management of pain and haemorrhage in three hospice inpatients in whom other options had been exhausted is presented.
Abstract: Transcatheter arterial embolization (TCAE) is a well recognized radiological technique that has been used for over 25 years. It is a method of diminishing blood flow through selected vessels by inserting haemostatic material under angiographic control. The procedure is performed under local anaesthetic through a femoral or, occasionally, an axillary approach.We present our experience of the use of TCAE in the management of pain and haemorrhage in three hospice inpatients in whom other options had been exhausted. The use of TCAE as a technique for the palliation of these symptoms in the hospice setting is discussed.
TL;DR: The number of patients from black and ethnic minorities cared for by specialist palliative care services, despite the fact that these groups now form 5.5% of the UK population overall, and a much larger proportion in London and the Midlands, is marked a watershed.
Abstract: marks a watershed in the development of palliative care in the UK. For some years concern has been expressed about the low numbers of patients from black and ethnic minorities cared for by specialist palliative care services, despite the fact that these groups now form 5.5% of the UK population overall, and a much larger proportion in London and the Midlands. There have been very few studies providing firm rather than anecdotal evidence on this issue.
TL;DR: It was concluded that examining the advantages and disadvantages of the 12- hour shift system increased awareness of the needs of staff, presented a useful way of identifying and managing potential difficulties within the workplace, and highlighted areas for future research.
Abstract: A system of 12-hour nursing shifts was adopted at a newly-opened independent hospice. This paper presents the results from an exploratory, descriptive study in which nursing staff reported perceived advantages, disadvantages and satisfaction with the 12-hour shift system. A small sample (n = 11) of both qualified and unqualified nurses working the 12-hour shift completed the questionnaire. A content analysis of the qualitative data produced a number of categories relating to the perceived advantages and disadvantages of the 12-hour shift system in relation to the respondents, to the hospice and to patient and family care. The need for continuing to monitor and evaluate the shift system was demonstrated, particularly in relation to patient and family satisfaction, and the quality of care. It was concluded that examining the advantages and disadvantages of the 12-hour shift system increased awareness of the needs of staff, presented a useful way of identifying and managing potential difficulties within the workplace, and highlighted areas for future research.
TL;DR: The authors still know very little about the quality of life of patients receiving palliative chemotherapy, compared with those patients receiving ’best supportive care’, and cytotoxic drugs are often used in clinical settings in which there is only meagre evidence of benefit.
Abstract: Some of the most significant advances in cancer treatment over the past 20 years have resulted from the use of cytotoxic chemotherapy in patients with disseminated cancers such as choriocarcinoma, non-Hodgkin’s lymphoma, Hodgkin’s disease, germ cell tumours and various childhood malignancies. Many of these patients are now cured, and protocols for curative treatment are well established. However, most patients receiving chemotherapy are being treated with palliative, rather than curative, intent and there is no consensus on ’best documented practice’ for this larger group of patients. Thousands of scientific papers have now been published in the oncology literature, attesting to the poor response rates of many human solid tumours with the use of chemotherapy; examples include metastatic non-small cell lung cancer, malignant melanoma, thyroid carcinoma, renal cell carcinoma, hepatocellular and hepatobiliary carcinomas, soft tissue sarcoma, gastric carcinoma, endometrial and cervical carcinomas, cerebral astrocytoma, and prostatic carcinoma. However, despite the plethora of clinical papers that document relatively poor ’response rates’ for these tumours, cytotoxic drugs are often used in clinical settings in which there is only meagre evidence of benefit. Furthermore, despite significant recent interest in developing valid quality of life instruments, we still know very little about the quality of life of patients receiving palliative chemotherapy, compared with those patients receiving ’best supportive care’. Even in patients who do receive chemotherapy for symptomatic control of their malignancy, we do not know which cancer-related symptoms are alleviated, and which are not. A number of clinicians have called for the