General practice palliative care: Patient and carer expectations, advance care plans and place of death-a systematic review

Background: With an increasing ageing population in most countries, the role of general practitioners (GPs) and general practice nurses (GPNs) in providing optimal end of life (EoL) care is increasingly important. Objective: To explore: (1) patient and carer expectations of the role of GPs and GPNs at EoL; (2) GPs’ and GPNs’ contribution to advance care planning (ACP) and (3) if primary care involvement allows people to die in the place of preference. Method: Systematic literature review. Data sources: Papers from 2000 to 2017 were sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases. Results: From 6209 journal articles, 51 papers were relevant. Patients and carers expect their GPs to be competent in all aspects of palliative care. They valued easy access to their GP, a multidisciplinary approach to care and well-coordinated and informed care. They also wanted their care team to communicate openly, honestly and empathically, particularly as the patient deteriorated. ACP and the involvement of GPs were important factors which contributed to patients being cared for and dying in their preferred place. There was no reference to GPNs in any paper identified. Conclusions: Patients and carers prefer a holistic approach to care. This review shows that GPs have an important role in ACP and that their involvement facilitates dying in the place of preference. Proactive identification of people approaching EoL is likely to improve all aspects of care, including planning and communicating about EoL. More work outlining the role of GPNs in end of life care is required

End-of-life hospital referrals by out-of-hours general practitioners: a retrospective chart study

<p>Abstract</p> <p>Background</p> <p>Many patients are transferred from home to hospital during the final phase of life and the majority die in hospital. The aim of the study is to explore hospital referrals of palliative care patients for whom an out-of-hours general practitioner was called.</p> <p>Methods</p> <p>A retrospective descriptive chart study was conducted covering a one-year period (1/Nov/2005 to 1/Nov/2006) in all eight out-of-hours GP co-operatives in the Amsterdam region (Netherlands). All symptoms, sociodemographic and medical characteristics were recorded in 529 charts for palliative care patients. Multivariate logistic regression analysis was performed to identify the variables associated with hospital referrals at the end of life.</p> <p>Results</p> <p>In all, 13% of all palliative care patients for whom an out-of-hours general practitioner was called were referred to hospital. Palliative care patients with cancer (OR 5,1), cardiovascular problems (OR 8,3), digestive problems (OR 2,5) and endocrine, metabolic and nutritional (EMN) problems (OR 2,5) had a significantly higher chance of being referred. Patients receiving professional nursing care (OR 0,2) and patients for whom their own general practitioner had transferred information to the out-of-hours cooperative (OR 0,4) had a significantly lower chance of hospital referral. The most frequent reasons for hospital referral, as noted by the out-of-hours general practitioner, were digestive (30%), EMN (19%) and respiratory (17%) problems.</p> <p>Conclusion</p> <p>Whilst acknowledging that an out-of-hours hospital referral can be the most desirable option in some situations, this study provides suggestions for avoiding undesirable hospital referrals by out-of-hours general practitioners at the end of life. These include anticipating digestive, EMN, respiratory and cardiovascular symptoms in palliative care patients.</p

Supporting people with active and advanced disease: a rapid review of the evidence

1.1 Background: the NCSI AAD group The National Cancer Survivorship Initiative (NCSI, 2010) was set up in response to the NHS Cancer Reform Strategy (Department of Health, 2007) as a collaboration between Macmillan Cancer Support, the Department of Health and NHS Improvement, with the goal to achieve a better understanding of the experiences of cancer survivors and to advocate for the provision of services to support them. Within this broad remit, it was recognised that there was a particular group of patients whose needs were commonly neglected; people who were experiencing the ongoing effects of cancer beyond first-line treatment but who were not at end of life. The Active and Advanced Disease (AAD) working group was created to consider issues of relevance to such people. 1.2 Aims of this review This project set out to meet the following aim: To review the literature on selected cancers in order to identify implications for the development of services to support patients experiencing difficulties associated with active and advanced disease

Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Background Dementia has an enormous impact on the lives of individuals and families, and on health and social services, and this will increase as the population ages. The needs of people with dementia and their carers for information and support are inadequately addressed at all key points in the illness trajectory. Methods The Unit is working specifically on an evaluation of the impact of the Mental Capacity Act 2005, and will develop practice guidance to enhance concordance with the Act. Phase One of the study has involved baseline interviews with practitioners across a wide range of services to establish knowledge and expectations of the Act, and to consider change processes when new policy and legislation are implemented. Findings Phase 1, involving baseline interviews with 115 practitioners, identified variable knowledge and understanding about the principles of the Act. Phase 2 is exploring everyday decision-making by people with memory problems and their carers

Transitions at the end of life for older adults - patient, carer and professional perspectives

BackgroundThe end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.ObjectiveThe aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.SettingEngland.ParticipantsThirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.Design and methodsThis was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.ResultsTransitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.ConclusionsDevelopment of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.FundingThe National Institute for Health Research Health Services and Delivery Research programme

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Background: Advance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic. Aim: To investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life. Design and data collection: Qualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total. Setting: General practices and community care settings in the East Midlands of England. Findings: The study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare. Conclusions: Advance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity. Future work: Attention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care. Funding: The National Institute for Health Research Health Services and Delivery Research programme

Dying at home in Norway: Health care service utilization in the final months of life

Background: Although many people prefer to die at home, few people die at home in Norway. We know little about sociodemographic characteristics of people who die at home, the extent of palliative end of life care provided by health care services and whether they enable people to die at home. Aim: Investigate individual characteristics of decedents, health care service utilization in the last three months of life and associations with dying at home. Method: Population-based registry data from the Norwegian Cause of Death Registry were linked with other Norwegian registries, covering all decedents in Norway within 2012-2013, with data from the last 13 weeks before death. Paper 1 investigated individual sociodemographic factors and estimated potentially planned home deaths that occurred at home. In Paper 2, trajectories of home nursing services and admissions to short-term skilled nursing facilities were estimated. Potentially planned home deaths for deaths in all locations were also estimated. Paper 3 investigated follow-up from general practitioners, OOH services and hospitalizations. Associations with home deaths and factors of interest were estimated by regression analyses in all papers. Results: Overall, 15% of the total population (22% of the community-dwelling) died at home. We estimated that 24% of community-dwelling people (16% of total population) had deaths that were potentially planned to occur at home, regardless of actual location of death; nearly a third occurred at home. The most common causes of death at home were circulatory disease (35%) and cancer (22%). The predicted probability of dying at home increased with 39% when cause of death was symptoms/ill-defined and 9% for external causes of death but decreased with 12% for cancer compared to circulatory disease. In total, 18% of men and 12% of women died at home. There was a trend where younger decedents were more likely to die at home, ranging from a 39% predicted probability in people <40 years to 8% in those ≥90 years. For the community-dwelling, we estimated four trajectories of home nursing services and four short-term skilled nursing facility trajectories. Almost half received no home nursing. A quarter received a high level of home nursing; almost 7 hrs/wk. This was the only home nursing service trajectory associated with dying at home compared to hospital (aRRR 1.29). A fifth had decreasing home nursing and about 8% accelerating home nursing towards the end of life. Almost 70% had a low probability of having a short-term skilled nursing facility stay. Another 7% had intermediate probability, 16% escalating probability and 8% increasing probability of a short-term skilled nursing facility stay. Trajectories of increasing (aRRR 0.40), escalating (aRRR 0.32) and intermediate skilled nursing facility (aRRR 0.65) were associated with reduced likelihood of dying at home. Almost half the people with causes of death that predicted a potentially planned home death followed the high home nursing service trajectory. Nearly all people with potentially planned home deaths followed the trajectory with low probability of skilled nursing facility stays. During the last 13 weeks, 14% of the total population received ≥1 GP home visit, 43% ≥1 GP office consultations and 41% had GP interdisciplinary collaboration. A minority had OOH consultations, while hospitalizations escalated. During the last four weeks, 7% of patients (10% of community-dwelling) received ‘appropriate’ follow-up with ≥1 home visit when the GP had ≥1 interdisciplinary collaboration. GP home visits (1: 3%; ≥2: 7%) and interdisciplinary collaboration (1: 2%; ≥2: 5%) increased the predicted probability of dying at home in a dose-dependent manner. Health care services where the person had to leave home, including GP office consultations, OOH consultations and hospitalizations reduced the predicted probability of dying at home. Conclusions and implications: Few people died at home and many home deaths appear to have been unplanned. At a population level, follow-up from GPs and home nursing services at the end of life may enable people to die at home. Our results imply that most people dying in Norway do not receive enough ‘appropriate’ follow-up to make a home death feasible. The potential for delivering palliative end of life care at home is not utilized. To enable more home deaths, we should start talking about our preferences regarding end of life care and place of death. The way forward must include both an individual and a system perspective to give dying people a real choice about where they spend the end of life