Palliative Medicine

Background: De-institutionalization of health care services provided to terminally ill cancer patients is a cost-effective strategy that underpins health care reforms in Canada. The objective of this study therefore is to evaluate the economic implications associated with Canadian innovations in the delivery of palliative care services. Methods: We identified 16 282 adults who died of cancer between 1993 and 2000 in two Canadian cities with newly introduced palliative care programs. Linkage of administrative databases was used to measure healthcare resource utilization. We sought to describe the utilization of palliative care services and its consequences for overall health care system costs. Results: Use of palliative services increased from 45 to 81% of cancer patients during the study period. Identifiable public health care services cost $28 093Cdn/patient (19 033US$, 11 508GB£, 17 778t) for terminally ill cancer patients in their last year of life. Acute care accounted for two-thirds (67%) of these costs; physician (10%), residential hospice care (8%), nursing homes (6%), home care (6%) and prescription medications (3%) comprise the remainder. Increased costs associated with the introduction of palliative care programs were offset by cost savings realized when terminally ill cancer patients spent less time in hospital. Palliative home care and residential hospice care accounted for the bulk of this substitution effect. Cost neutrality was observed from the public perspective. Discussion: These results demonstrate that the introduction of comprehensive and community-based palliative care services resulted in increased palliative care service delivery and cost neutrality, primarily achieved through a decreased use of acute care beds.

Incident pain related to bone metastases is a problematic symptom to treat. The difficulty in treating this type of pain is reflected in the wide variety of treatment modalities recommended. The aims of this prospective observational study were to determine the patterns of pain severity at rest and on movement over time and which treatment modalities are employed. In addition, we were interested in ascertaining any correlations between bone pain at rest, bone pain on movement and functional ability.

Thirty-two patients were followed up for a mean of 22 weeks (range: 2-52). In total, there were 704 patient follow-up weeks. Patients were followed up for one year or until death. A total of 19 different treatment modalities were employed. There were strong correlations between pain at rest and pain on movement. There were no significant correlations between functional ability and pain at rest or movement.

Our study demonstrates the complex management of patients with bone pain. This is the first study that highlights the correlation between pain at rest and pain on movement in patients with bone metastases in a palliative care population. It highlights the need for intensive follow-up of these patients, as they require multiple interventions to help control their pain. These data can also be used to power further interventional studies.

The disclosure of information to patients about diagnosis and prognosis and other aspects of care is still a matter of debate. We have conducted a study in advanced cancer patients about their experiences and preferences concerning this issue. A questionnaire was developed and completed during the first appointment in the outpatient clinic of an oncology centre's palliative care unit, before the patient had any contact with the staff of the unit. The study was conducted on a convenience sample of 47 patients. We found that 34 (72%) of those patients thought they had been informed of their diagnosis, most of them by the hospital doctor. However, not all stated the diagnosis in a manner clearly showing that they were aware of the nature of their disease. Most patients were with a family member when the diagnosis was disclosed, which is what the majority had preferred. Of the 13 uniformed patients, only one preferred to remain uninformed. Most patients (89%) participated in decisions concerning treatment, although only 68% thought they should have participated. Some 39 patients (83%) were informed that they were being referred to the palliative care unit, but surprisingly only eight had received an explanation of the unit's function. We concluded that, although most patients had been informed of their disease, there remains many problems, the most important of which, in our view, is the difference between the information provided and the patients' needs.

A revelação da informação sobre o diagnóstico o prognóstico e outros aspectos dos cuidados é ainda um assunto em debate. Realizámos um estudo em doentes com cancro avançado sobre as suas experiências e preferências no que diz respeito a este tema. Foi desenvolvido um questionário que foi aplicado na primeira consulta externa de uma unidade de cuidados paliativos de um centro oncológico, antes de terem contacto com o pessoal da unidade. O estudo foi realizado numa amostra de conveniência de 47 doentes. Constatámos que 34 (72%) desses doentes pensavam que tinham sido informados do seu diagnóstico, a maioria pelo médico do hospital. Contudo, nem todos nomearam o diagnóstico de um modo que mostrasse claramente que tinham noção da natureza da sua doença. A maioria dos doentes estava com um familiar quando o diagnóstico foi revelado e era assim que a maior parte preferia. Dos 13 doentes não informados só um preferia manter-se sem informação. A maior parte dos doentes (89%) participou nas decisões terapêuticas, embora só 68% pensasse que devia ter participado. Trinta e nove doentes (83%) foram informados de que tinham sido referenciados para a unidade de cuidados paliativos, mas surpreendentemente só oito tinham tido uma explicação sobre a função da unidade. Concluímos que embora a maioria dos doentes tenha sido informada da sua doença há ainda muitos problemas, sendo o mais importante, do nosso ponto de vista, a diferença entre a informação prestada e as necessidades dos doentes.

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams.

Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.

Given that the meaning and significance of ‘quality of life’ can differ among language and cultural groups, it is incumbent upon researchers to assess whether the tool they have chosen is appropriate to the population under study. This study aimed to test the reliability and validity of the McGill Quality of Life Questionnaire (MQOL) translated into Hebrew for use with palliative care patients in Israel. In this, as in previous studies, the 16 questions of the tool clustered into four domains (physical, psychological, existential well-being and support), although the distribution of items among them differed somewhat. The existential well-being and psychological domains had an independent effect on the overall quality of life of patients in Israel, as in other countries. It seems that this tool produces similar responses in metastatic cancer patients around the world, and hence can be used to compare palliative care services in different countries.

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

Objectives: To develop a method for estimating the population who could potentially benefit from receiving palliative care in the last year of their lives, and then apply the estimates to the Western Australian population to ascertain characteristics of these people. Methods: Three estimates of the potential palliative care population, Minimal, Mid-range and Maximal, were developed through focus groups, interviews and the literature. These estimates were applied to the cohort of people who died in Western Australia between 1 July 2000 and 31 December 2002 by linking death records with hospital morbidity data through the Western Australian Data Linkage System. Results: Between 0.28% and 0.50% of people in the Western Australian population in any one year could potentially benefit from palliative care, many of whom die from conditions other than neoplasms. While neoplasms accounted for 59.5% of all underlying causes of deaths in the Minimal Estimate, heart failure (21.0%), renal failure (9.8%), chronic obstructive pulmonary disease (9.6%), Alzheimer’s disease (4.0%), liver failure (3.2%), Parkinson’s disease (1.3%), motor neurone disease (0.9%), HIV/AIDS (B-0.01%) and Huntington’s disease (B-0.01%) accounted for other conditions in this estimate. The study was expanded to include Mid-range and Maximal Estimates. Characteristics of the Western Australian population in these three estimates are described. Conclusions: Unlike traditional palliative care estimates that focus on malignant disease, this study included nonmalignant conditions in a set of three estimates of a potential palliative care population. By using population-based data to describe characteristics of people who compose palliative care populations, these results offer a tool for planning equitable healthcare services.