Palliative care research

doi:10.1016/S0959-8049(01)00260-X

European Journal of Cancer

Volume 37, Supplement 8, September 2001, Pages 153-159

https://doi.org/10.1016/S0959-8049(01)00260-X Get rights and content

Abstract

Most of the research in palliative medicine is of a descriptive nature. Clinical practice is based upon clinical experience rather than upon research. The level of appropriate research reduces the chance for improvement of palliative care. Ethical and methodological obstacles seem to be prominent in palliative care research. The Declaration of Helsinki is generally accepted as an ethical code of practice for clinical research and it also applies to palliative care. In order to obtain reliable data, standardisation of data collection is needed. Improvement of quality of life is the primary endpoint in most studies in palliative care. The existing validated quality of life instruments such as the European Organization for Research and Treatment of Cancer (EORTC) quality of life (QLQ)-C30 can be used until the patient is too sick to complete the questionnaire. New approaches are needed and must be developed for the dying patients. Palliative care research needs proper funding; specific programmes supporting research on a European level are needed. The European Association for Palliative Care (EAPC) is capable of conducting and coordinating collaborative research in palliative care on a European level.

Introduction

The World Health Organization (WHO) has defined palliative care as follows: “...the active, total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment” [1].

Palliative care comprises care for patients who can not be cured. It can be defined as a comprehensive approach, which should include optimal medical diagnostic work-up, use of the best medical treatment possible, excellent nursing care, psychosocial and spiritual support. Additionally, it ought to be family focused. In the beginning of the hospice movement, emphasis was placed on the last days or weeks of a patient's life. The focus has been broadened during the last few decades, to include patients earlier in the trajectory of a terminal disease (Table 1). In order to improve patient care, programmes need to be created, and symptom control, rehabilitation and bereavement services need to be enhanced.

In general, the goal in medicine is to recommend treatments based upon research (i.e. the medicine should be evidence-based). The same applies for palliative medicine. Clinical and organisational challenges will depend upon cultural and geographical factors, probably more so for end-of-life care than for medicine in general. In several European countries, oral morphine is not available for use in routine clinical practice and, if available, restrictions on the prescription rules are substantial. Another challenge is related to the costs of the ‘new’ slow-release opioids, given either as tablets or applied transdermally. Therefore, an appropriate strategy is to still recommend immediate-release morphine as opioid of choice in several European countries. Organisations such as WHO and the European Association for Palliative Care (EAPC) should work collaboratively in order to improve the regulations to benefit this growing patient population. Palliative medicine should be taught in medical schools as a mandatory subject since all clinicians will be regularly confronted with the challenges of palliative care. By having the subject on the medical curricula, a necessary academic standard should be reached in the future.

Section snippets

Challenges

Most research in palliative medicine is descriptive in nature. Clinical practice is often based upon clinical experience, with little or no evidence from proper clinical research. Small descriptive non-comparative studies may be available; however, longitudinal studies with an optimal study design are rarely found in palliative care. Often evidence in palliative care is extrapolated from clinical research in the earlier phases of a disease. The limited amount of appropriate research probably

Patient population

There is an ongoing debate on how to define the target population in palliative medicine. Several variables are probably needed to target the population reliably (Table 1). In prospective studies assessing the effects of palliative care programmes, inclusion criteria have varied according to the institution, i.e. treated in hospice, home care, or oncology departments and also for individual patient characteristics, such as expected survival, tumour burden, symptoms, etc.

Treatment intention

General considerations on research in palliative care

Several arguments have been given to discourage clinical research in palliative care. It has been argued that the patient population is too ill and too vulnerable to allow meaningful scientific research. Secondly, it has been argued that there is not much more to learn, and that the accumulated wisdom is a good enough platform for clinical practice. Thirdly, the population is too heterogeneous for clinical research on a group level. A statement from Duncan Vere in the early 1980s might be used

Methodology

Apart from the ethical challenges in palliative care research, there are several difficulties of a methodological nature. The patient population has multisystem affection with many simultaneous symptoms; limited survival and polypharmacy is also common. This pattern leads to difficulties related to trial design, outcome measures and compliance.

It has been argued that it is difficult to perform randomised, controlled trials in a palliative setting. However, some centres have shown that even in

Health-related quality of life (HRQOL)

As stated in the WHO definition of palliative care, its goal is the achievement of the best possible QOL for the patients and their families. The use of QOL as an outcome is therefore self-explanatory. Most people have an intuitive understanding of this concept. It may be regarded as a positive term, conveying a person's subjective impression of his life and living situation. It often includes assessment of general satisfaction, fulfilment and happiness, as well as being in control and having a

Research provides new important information

Evidence-based medicine needs to integrate the best individual's experience with available clinical evidence from research. Resource allocation in the healthcare system will probably rely on the evidence of effect even more so in the future. In order to receive proper resources in palliative care, interventions need to be proven to be effective. Such evidence is sparse in palliative medicine; therefore, research organisations on local, national and international levels need to be established.

European Association of Palliative Care—Research Network

The EAPC was established in 1988 as a multidisciplinary organisation and encompasses the patient, the family, the health care providers and the community. It is now a federation of 23 National Associations, and consists of approximately 23 000 members [28]. Within the EAPC, a Research Network is established.

The Research Network is working to improve palliative treatment through expert group recommendations based upon the existing literature and to perform multinational research. The first

Concluding remarks

It is our belief that patients in a palliative stage of disease, including dying patients, should receive treatment based upon an optimal diagnostic work-up, combined with skilled nursing and the contribution of the multiprofessional staff, including specialists such as clergy, psychologists, social workers and physiotherapists, often in close collaboration with various medical specialities.

More research is needed to better understand the pathophysiology of the dying patients. Combined efforts

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The SILENCE study, performed in six inpatient hospice facilities, was a placebo-controlled trial to study the effect of ScopolamIne butyLbromidE giveN prophylactiCally for dEath rattle in dying patients. We addressed patients’ vulnerability by using an advance consent procedure, and potential gatekeeping by extensive training of health care professionals and the appointment of hospice doctors as daily responsible researchers.
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A Framework for Generalizability in Palliative Care
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Such an analysis would need to be stratified for the study design and will also allow subsequent analysis of the framework. There is urgency in applying the work from this model, given major new national and international initiatives in palliative care clinical research.46–48 These significant projects, which will contribute so strongly to EBP, need to include in their data-collection design the five domains in order to optimize the ability of clinicians to apply most effectively the results in daily practice.
Palliative medicine has only recently joined the ranks of evidence-based medical subspecialties. Palliative medicine is a rapidly evolving field, which is quickly moving to redress its historical paucity of high-quality research evidence. This burgeoning evidence base can help support the application of evidence-based principles in palliative and hospice clinical care and service delivery. New knowledge is generally taken into practice relatively slowly by established practitioners. At present, the translation of evidence into palliative and hospice care clinical practice lags behind emerging research evidence in palliative care at even greater rates for three critical reasons: 1) the application of research results to specific clinical subpopulations is complicated by the heterogeneity of palliative care study subpopulations and by the lack of a recognized schema for describing populations or services; 2) definitional issues in service provision are, at best, confusing; and 3) fundamental research concepts (e.g., external validity, effect size, generalizability, applicability) are difficult to apply meaningfully in palliative care. This article provides a suggested framework for classifying palliative care research subpopulations and the clinical subpopulations to which the research findings are being applied to improve the ability of clinicians, health planners, and funders to interpret and apply palliative care research in real-world settings. The framework has five domains: patients and caregivers; health professionals; service issues; health and social policy; and research.
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Palliative care sessions have also been introduced at the main oncology meetings in Europe (ESMO and ECCO) and USA (ASCO). Clinical practice in cancer palliative care is largely based upon clinical experience and not evidence based.3 Most studies are small, of descriptive nature and reliable, valid and internationally endorsed outcomes are not used.4
Palliative care is developed primarily outside academic institutions and with a primary focus upon service development. Initiatives to formalise the research structure were taken in Europe in 1996 by the European Association for Palliative Care (EAPC) through the establishment of the EAPC research network, and in 1998 in United Kingdom through the establishment of a palliative care research society.
Most studies conducted in cancer palliative care up to now have been small and descriptive without the necessary quality to give input into evidence based medicine.
The study population is described and defined differently between studies and there is no consensus on how to measure the most important outcomes, such as symptoms including pain, fatigue and depression in palliative care research.
During the last decade, large research groups have been established in some countries – partly based upon national and international grants. In order to improve palliative care research nationally and internationally, these few groups of sufficient size and of sufficient output need to be given the responsibility and incentives to perform collaborative research nationally and internationally. It is necessary to train a sufficient number of clinician scientists within palliative care research and to give these scientists the possibility of permanent research posts in particular combined clinical and research posts after the research training period. National and international funding needs to continue and successful collaboratives need to receive predictable, sustainable funding. Since the majority of palliative care patients come from oncology, it is important to establish a close collaboration between these two disciplines.
An examination of the research priorities for a hospice service in New Zealand: A Delphi study
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Description of a teaching method for research education for palliative care healthcare professionals
2015, Palliative and Supportive Care

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View full text

Palliative care research

Abstract

Introduction

Section snippets

Challenges

Patient population

General considerations on research in palliative care

Methodology

Health-related quality of life (HRQOL)

Research provides new important information

European Association of Palliative Care—Research Network

Concluding remarks

Ann. Oncol.

Radiother. Oncol.

Radio. Oncol.

Cancer Treat Rev.

Radiother. Oncol.

J. Pain Symptom Manage.

Lancet

Eur. J. Cancer

J. Pain Symptom Manage.

J. Pain Sympt. Manage

J. Chronic Dis.

Nutrition

Cancer Pain Relief and Palliative Care. Technical Report, Series 804

Polychemotherapy in advanced non small cell lung cancera meta-analysis

Lancet

Principles governing the use of cancer chemotherapy in palliative care