Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study

Background: Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice. Methods: We conducted a Phase 0-I study according to the Medical Research Council (MRC) Framework. Phase 0 consisted of a systematic literature review about the barriers and facilitators for GPs to engage in ACP, focus groups with GPs were held about their experiences, attitudes and concerns regarding initiating ACP in general practice and a review of ACP interventions to identify potential components for the development of our intervention. In Phase 1, we developed a complex intervention to support the initiation of ACP in general practice in patients at risk of deteriorating or dying, based on the results of Phase 0. The complex intervention and its components were reviewed and refined by two expert panels. Results: Phase 0 resulted in the identification of the factors inhibiting or enabling GPs' initiation of ACP and important components underpinning existing ACP interventions. Based on these findings, an intervention was developed in Phase 1 consisting of: (1) a training for GPs in initiating and conducting ACP discussions, (2) a register of patients eligible for ACP discussions, (3) an educational booklet on ACP for patients to prepare the ACP discussions that includes general information on ACP, a section on the role of GPs in the process of ACP and a prompt list, (4) a conversation guide to support GPs in the ACP discussions and (5) a structured documentation template to record the outcomes of discussions. Conclusion: Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study

Involvement of palliative care services strongly predicts place of death in Belgium

Introduction: Place of death is considered a quality indicator of end-of-life care and enabling people to die were they choose is an important aspiration of palliative care. This study aims to examine the association between involvement of palliative care services and place of death. Methods: Data about patient characteristics, use of general health care, and involvement of palliative care services in nonsudden or expected deaths in all health care settings in 2005-2006 (N = 1690) were collected by a surveillance network of general practitioners (GPs) in Belgium. Bivariate and multivariate associations between involvement of palliative care services and dying at home, in hospital, in a care home, or in a palliative care unit were examined using chi(2) tests and Wald tests. Results: Palliative care services were involved in 21.8% of deaths of those living at home, in 29.1% of those living in care homes, and in 12.4% of deaths in hospital. People were more likely to die in their usual residence rather than in hospital if multidisciplinary palliative home care teams (odds ratio [OR]: 8.4, confidence interval [CI]: 4.7-15.1) or the palliative care reference persons of their care home (OR: 9.4, CI: 3.3-26.7) were involved. Involvement of multidisciplinary palliative support teams in hospitals was associated with lower chances of dying at home (OR: 0.3, CI: 0.1-0.9). High involvement of GPs was not directly associated with out-of-hospital death. Discussion: Involving multidisciplinary palliative home care teams and palliative care reference persons in care homes could support people in dying out-of-hospital. Health care policy-makers should consider strategies to improve involvement of palliative care services in all health care settings

How do general practitioners conceptualise advance care planning in their practice? : a qualitative study

Objectives : To explore how GPs conceptualise advance care planning (ACP), based on their experiences with ACP in their practice. Methods : Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method. Results : Four overarching themes in the conceptualisations of ACP were discerned: (1) the organisation of professional care required to meet patients' needs, (2) the process of preparing for death and discussing palliative care options, (3) the discussion of care goals and treatment decisions, (4) the completion of advance directives. Within these themes, ACP was both conceptualised in terms of content of ACP and/or in terms of tasks for the GP. A specific task that was mentioned throughout the discussion of the four different themes was (5) the task of actively initiating ACP by the GP versus passively waiting for patients' initiation. Conclusions : This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. A shared conceptualisation and agreement on the purpose and goals of ACP is needed to ensure successful implementation, as well as a systematic integration of ACP in routine practice that could lead to a better uptake of all the important elements of ACP

Developing indicators of appropriate and inappropriate end-of-life care in people with Alzheimer’s disease, cancer or chronic obstructive pulmonary disease for population-level administrative databases : a RAND/UCLA appropriateness study

Background: A substantial amount of aggressive life-prolonging treatments in the final stages of life has been reported for people with progressive life-shortening conditions. Monitoring appropriate and inappropriate end-of-life care is an important public health challenge and requires validated quality indicators. Aim: To develop indicators of appropriate and inappropriate end-of-life care for people with cancer, chronic obstructive pulmonary disease or Alzheimer's disease, measurable with population-level administrative data. Design: modified RAND/UCLA appropriateness method. Setting/participants: Potential indicators were identified by literature review and expert interviews and scored in a survey among three panels of experts (one for each disease group). Indicators for which no consensus was reached were taken into group discussions. Indicators with consensus among the experts were retained for the final quality indicator sets. Results: The final sets consist of 28 quality indicators for Alzheimer's disease, 26 quality indicators for cancer and 27 quality indicators for chronic obstructive pulmonary disease. The indicator sets measure aspects of aggressiveness of care, pain and symptom treatment, specialist palliative care, place of care and place of death and coordination and continuity of care. Conclusion: We developed a comprehensive set of quality indicators of appropriate and inappropriate end-of-life care in people with Alzheimer's disease, cancer or chronic obstructive pulmonary disease, to be used in population-level research. Our focus on administrative healthcare databases limits us to treatment and medication, excluding other important quality aspects such as communication, which can be monitored using complementary approaches. Nevertheless, our sets will enable an efficient comparison of healthcare providers, regions and countries in terms of their performance on appropriateness of end-of-life care

Study on the factors determining home death of patients during home care: A historical cohort study at a home care support clinic.

Aim Associations between markedly low activities of daily living (ADL) at the start of home visit care and patient home death were analyzed using data from a home care support clinic in Japan that has a low rate of home deaths. Methods The study was a historical cohort study. It involved patients who began to receive home visit care from a home visit care support clinic between 1 April 2006 and 31 March 2011. Using home death as a dependent variable and presence/absence of markedly low ADL and other parameters (cancer, the patient's desire for home death, etc.) as independent variables, the adjusted hazard ratio and 95% confidence interval (CI) were calculated using the Cox proportional hazards model. Results Markedly low ADL were associated with home death even after adjustment for factors that influence home death (adjusted hazard ratio 4.40; 95% CI 2.37–8.16). Cancer and the patient's desire for home death were statistically significant factors involved in home death. In a subgroup analysis according to the presence/absence of cancer, the association between markedly low ADL and home death was stronger in the cancer-free group (adjusted hazard ratio 10.78; 95% CI 2.89–40.26) than in the cancer group (adjusted hazard ratio 5.58; 95% CI2.39–13.05). Conclusion Patients' desire for home death could be fulfilled if home care support clinics provide home visit services to not only terminal-stage cancer patients, but also bedridden cancer-free patients. We must establish systems for older adults to remain at home during the terminal period of their lives. Geriatr Gerontol Int 2012; ●●: ●●–●●

Involvement of palliative care services strongly predicts place of death in Belgium.

Abstract Introduction: Place of death is considered a quality indicator of end-of-life care and enabling people to die were they choose is an important aspiration of palliative care. This study aims to examine the association between involvement of palliative care services and place of death. Methods: Data about patient characteristics, use of general health care, and involvement of palliative care services in nonsudden or expected deaths in all health care settings in 2005-2006 (N ¼ 1690) were collected by a surveillance network of general practitioners (GPs) in Belgium. Bivariate and multivariate associations between involvement of palliative care services and dying at home, in hospital, in a care home, or in a palliative care unit were examined using w 2 tests and Wald tests. Results: Palliative care services were involved in 21.8% of deaths of those living at home, in 29.1% of those living in care homes, and in 12.4% of deaths in hospital. People were more likely to die in their usual residence rather than in hospital if multidisciplinary palliative home care teams (odds ratio [OR]: 8.4, confidence interval [CI]: 4.7-15.1) or the palliative care reference persons of their care home (OR: 9.4, CI: 3.3-26.7) were involved. Involvement of multidisciplinary palliative support teams in hospitals was associated with lower chances of dying at home (OR: 0.3, CI: 0.1-0.9). High involvement of GPs was not directly associated with out-of-hospital death. Discussion: Involving multidisciplinary palliative home care teams and palliative care reference persons in care homes could support people in dying out-of-hospital. Health care policy-makers should consider strategies to improve involvement of palliative care services in all health care settings

Study of recent and future trends in place of death in Belgium using death certificate data: a shift from hospitals to care homes

<p>Abstract</p> <p>Background</p> <p>Since most patients prefer out-of-hospital death, place of death can be considered an indicator of end-of-life care quality. The study of trends in place of death is necessary to examine causes of shifts, to evaluate efforts to alter place of death and develop future policies. This study aims to examine past trends and future projections of place of death.</p> <p>Methods</p> <p>Analysis of death certificates (decedents aged ≥ 1 year) in Belgium (Flanders and Brussels Capital region) 1998-2007. Trends in place of death were adjusted for cause of death, sociodemographic characteristics, environmental factors, numbers of hospital beds, and residential and skilled nursing beds in care homes. Future trends were based on age- and sex-specific mortality prognoses.</p> <p>Results</p> <p>Hospital deaths decreased from 55.1% to 51.7% and care home deaths rose from 18.3% to 22.6%. The percentage of home deaths remained stable. The odds of dying in a care home versus hospital increased steadily and was 1.65 (95%CI:1.53-1.78) in 2007 compared to 1998. This increase could be attributed to the replacement of residential beds by skilled nursing beds. Continuation of these trends would result in the more than doubling of deaths in care homes and a decrease in deaths at home and in hospital by 2040.</p> <p>Conclusions</p> <p>Additional end-of-life care resources in care homes largely explain the decrease in hospital deaths. Care homes will become the main locus of end-of-life care in the future. Governments should provide sufficient skilled nursing resources in care homes to fulfil the end-of-life care preferences and needs of patients.</p

Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68–100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research

Advance care planning for cancer patients: A systematic review of perceptions and experiences of patients, families and healthcare providers

Background Patients with advanced cancer may benefit from end of life (EOL) planning, but there is evidence that their willingness and desire to engage in advance care planning (ACP) varies. The reasons for this remain poorly understood. Previous reviews on ACP most commonly report outcome measures related to medical interventions and type of care. Synthesis of the literature, which aims to illuminate the salient characteristics of ACP and investigates the psychological and social features of preparation for the EOL, is required. Methods We searched Medline, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials for studies on perceptions or experiences regarding ACP of adults with cancer, family, friends, or professionals caring for this group. Databases were searched from earliest records to 19 November 2014. A thematic analysis of the literature generated conceptual themes. Results Of the 2483 studies identified, 40 were eligible for inclusion. Studies addressed the relational nature of ACP, fear surrounding ACP, the conceptual complexity of autonomy, and the influence of institutional culture and previous healthcare experiences on ACP. Conclusions The complex social and emotional environments within which EOL planning is initiated and actioned are not sufficiently embedded within standardized ACP. The notion that ACP is concerned principally with the ‘right’ to self-determination through control over treatment choices at the EOL may misrepresent the way that ACP actually occurs in cancer care and ultimately conflict with the deeper concerns and needs of patients, who experience ACP as relational, emotional, and social