Koen Pardon

Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions?: a systematic review

CONTEXT If access to effective palliative care is to extend beyond cancer patients, an understanding of the comparative prevalence of palliative care problems among cancer and non-cancer patients is necessary. OBJECTIVES This systematic review aimed to describe and compare the prevalence of seventeen palliative care-related problems across the four palliative care domains among adults with advanced cancer, acquired immune deficiency syndrome, chronic heart failure, end-stage renal disease (ESRD), chronic obstructive pulmonary disease, multiple sclerosis, motor neuron disease, Parkinsons disease, and dementia. METHODS Three databases were searched using three groups of keywords. The results of the extraction of the prevalence figures were summarized. RESULTS The electronic searches yielded 4697 hits after the removal of 1784 duplicates. Of these hits, 143 met the review criteria. The greatest number of studies were found for advanced cancer (n=57) and ESRD patients (n=47), and 75 of the 143 studies used validated scales. Few data were available for people living with multiple sclerosis (n=2) and motor neuron disease (n=3). The problems with a prevalence of 50% or more found across most of the nine studied diagnostic groups were: pain, fatigue, anorexia, dyspnea, and worry. CONCLUSION There are commonalities in the prevalence of problems across cancer and non-cancer patients, highlighting the need for palliative care to be provided irrespective of diagnosis. The methodological heterogeneity across the studies and the lack of non-cancer studies need to be addressed in future research.

International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data

Background:Where people die can influence a number of indicators of the quality of dying. We aimed to describe the place of death of people with cancer and its associations with clinical, socio-demographic and healthcare supply characteristics in 14 countries.Methods:Cross-sectional study using death certificate data for all deaths from cancer (ICD-10 codes C00-C97) in 2008 in Belgium, Canada, Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (2010), USA (2007) and Wales (N=1 355 910). Multivariable logistic regression analyses evaluated factors associated with home death within countries and differences across countries.Results:Between 12% (South Korea) and 57% (Mexico) of cancer deaths occurred at home; between 26% (Netherlands, New Zealand) and 87% (South Korea) occurred in hospital. The large between-country differences in home or hospital deaths were partly explained by differences in availability of hospital- and long-term care beds and general practitioners. Haematologic rather than solid cancer (odds ratios (ORs) 1.29–3.17) and being married rather than divorced (ORs 1.17–2.54) were most consistently associated with home death across countries.Conclusions:A large country variation in the place of death can partly be explained by countries’ healthcare resources. Country-specific choices regarding the organisation of end-of-life cancer care likely explain an additional part. These findings indicate the further challenge to evaluate how different specific policies can influence place of death patterns.

Barriers and facilitators for general practitioners to engage in advance care planning: A systematic review

Abstract Objective. The aim of this systematic review is to identify the perceived factors hindering or facilitating GPs in engaging in advance care planning (ACP) with their patients about care at the end of life. Design. Studies from 1990 to 2011 were found in four electronic databases (PubMed, CINAHL, EMBASE, PsycINFO); by contacting first authors of included studies and key experts; and searching through relevant journals and reference lists. Studies were screened, graded for quality, and analysed independently by two authors; those reporting the perception by GPs of barriers and facilitators to engagement in ACP were included. Results. Eight qualitative studies and seven cross-sectional studies were included for data extraction. All barriers and facilitators identified were categorized as GP characteristics, perceived patient factors, or health care system characteristics. Stronger evidence was found for the following barriers: lack of skills to deal with patients’ vague requests, difficulties with defining the right moment, the attitude that it is the patient who should initiate ACP, and fear of depriving patients of hope. Stronger evidence was found for the following facilitators: accumulated skills, the ability to foresee health problems in the future, skills to respond to a patients initiation of ACP, personal convictions about who to involve in ACP, and a longstanding patient–GP relationship and the home setting. Conclusion. Initiation of ACP in general practice may be improved by targeting the GPs’ skills, attitudes, and beliefs but changes in health care organization and financing could also contribute.

Early identification of palliative care needs by family physicians: A qualitative study of barriers and facilitators from the perspective of family physicians, community nurses, and patients:

Background: There is a growing recognition that a palliative care approach should be initiated early and not just in the terminal phase for patients with life-limiting diseases. Family physicians then play a central role in identifying and managing palliative care needs, but appear to not identify them accurately or in a timely manner. Aim: To explore the barriers to and facilitators of the early identification by family physicians of the palliative care needs. Design, setting, and participants: Six focus groups (four with family physicians, n = 20, and two with community nurses, n = 12) and 18 interviews with patients with cancer, chronic obstructive pulmonary disease, heart failure, and dementia were held. Thematic analysis was used to derive themes that covered barriers and facilitators. Results: Key barriers and facilitators found relate to communication styles, the perceived role of a family physician, and continuity of care. Family physicians do not systematically assess non-acute care needs, and patients do not mention them or try to mask them from the family physician. This is embedded within a predominant perception among patients, nurses, and family physicians of the family physician as the person to appeal to in acute and standard follow-up situations rather than for palliative care needs. Family physicians also seemed to pay more often attention to palliative care needs of patients in a terminal phase. Conclusion: The current practice of palliative care in Belgium is far from the presently considered ideal palliative care approaches. Facilitators such as proactive communication and communication tools could contribute to the development of guidelines for family physicians and policymakers in primary care.

Palliative care service use in four European countries: a cross-national retrospective study via representative networks of general practitioners.

Background Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care. Methods Cross-national retrospective study. Over two years (2009–2010), GPs belonging to representative epidemiological surveillance networks in Belgium, the Netherlands, Italy, and Spain registered weekly all deaths of patients (≥18 years) in their practices and the care they received in the last three months of life using a standardized form. Sudden deaths were excluded. Results We studied 4,466 deaths. GPs perceived to have delivered palliative care to 50% of patients in Belgium, 55% in Italy, 62% in the Netherlands, and 65% in Spain (p<.001). Palliative care specialists attended to 29% of patients in the Netherlands, 39% in Italy, 45% in Spain, and 47% in Belgium (p<.001). Specialist palliative care lasted a median (inter-quartile range) of 15 (23) days in Belgium to 30 (70) days in Italy (p<.001). Cancer patients were more likely than non-cancer patients to receive palliative care in all countries as were younger patients in Italy and Spain with regard to specialist palliative care. Conclusions Although palliative care is established in the countries studied, there are considerable differences in its provision. Two potentially underserved groups emerge non-cancer patients in all countries and older people in Italy and Spain. Future research should examine how differences in palliative care use relate to both patient characteristics and existing national health care policies.

Preferences of advanced lung cancer patients for patient-centred information and decision-making: a prospective multicentre study in 13 hospitals in Belgium

OBJECTIVE To identify preferences of advanced lung cancer patients for receiving information and participating in decision-making concerning treatment options, health-care-setting transfers and end-of-life decision-making. METHODS Over the course of 1 year, pulmonologists and oncologists in 13 hospitals in Flanders, Belgium, invited patients with an initial diagnosis of non-small-cell lung cancer IIIb/IV to participate in the study. Shortly after inclusion, the patients were interviewed with a structured questionnaire. RESULTS One-hundred and twenty-eight patients with a median estimated survival time of 10 months participated. Almost all wanted information on diagnosis, treatment and cure rate and slightly fewer on life expectancy (88.2%). Information about palliative care was desired by 63.5% of patients and information about end-of-life decisions by 56.8%. The percentage of patients who preferred personal control over medical decision-making increased to 14.8% for treatment, 25.0% for transfer and 49.2% for end-of-life decisions, all of which were higher than for medical decisions in general (9.3%). CONCLUSION Information and participation preferences of advanced lung cancer patients differ depending on the type of information or decision. PRACTICE IMPLICATIONS As part of a patient-centred approach, physicians should not only check the general but also the specific information and participation preferences of their patients.

Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study

Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009–31 December 2010). Sudden deaths were excluded. Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs. Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.

Is There a Need for Early Palliative Care in Patients With Life-Limiting Illnesses? Interview Study With Patients About Experienced Care Needs From Diagnosis Onward

The early integration of specialist palliative care has been shown to benefit the quality of life of patients with advanced cancer. In order to explore whether other seriously ill people and people at even earlier phases would also benefit from early palliative care, we conducted 18 qualitative interviews with people having cancer, chronic obstructive lung disease, heart failure, or dementia at different phases of the illness trajectory about how they experienced care needs related to their disease from diagnosis onward. Respondents experienced needs within the different domains of palliative care at different stages of the illness and different illness types or duration of the illness. This study contributes to the understanding of primary care needs of patients for whom palliative care (not necessarily specialized palliative care) could be beneficial.

What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey

Background Many people who might benefit from specialist palliative care services are not using them. Aim We examined the use of these services and the reasons for not using them in a population in potential need of palliative care. Methods We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium. Results Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer). Conclusions Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority.

Is educational attainment related to end-of-life decision-making? : a large post-mortem survey in Belgium

BackgroundEducational attainment has been shown to influence access to and quality of health care. However, the influence of educational attainment on decision-making at the end of life with possible or certain life-shortening effect (ELDs ie intensified pain and symptom alleviation, non-treatment decisions, euthanasia/physician-assisted suicide, and life-ending acts without explicit request) is scarcely studied. This paper examines differences between educational groups pertaining to prevalence of ELDs, the decision-making process and end-of-life treatment characteristics.MethodWe performed a retrospective survey among physicians certifying a large representative sample of Belgian deaths in 2007. Differences between educational groups were adjusted for relevant confounders (age, sex, cause of death and marital status).ResultsIntensified pain and symptom alleviation and non-treatment decisions are more likely to occur in higher educated than in lower educated patients. These decisions were less likely to be discussed with either patient or family, or with colleague physicians, in lower educated patients. A positive association between education and prevalence of euthanasia/assisted suicide (acts as well as requests) disappeared when adjusting for cause of death. No differences between educational groups were found in the treatment goal in the last week, but higher educated patients were more likely to receive opioids in the last day of life.ConclusionThere are some important differences and possible inequities between educational groups in end-of-life decision-making in Belgium. Future research should investigate whether the found differences reflect differences in knowledge of and adherence to patient preferences, and indicate a discrepancy in quality of the end of life.