Uncertain trajectories in old age and implications for families and for palliative and end-of-life care policy and practice

© 2019 Taylor & Francis Group, LLC.The provision of high-quality end-of-life care for all is high on national (and international) agendas, but areas of unmet needs identified includes elderly people. This article draws on an autoethnographic account of the dying and death of my father to identify and interrogate disjunctions between end-of-life care policy and commonplace experiences of elderly people who die in a hospital setting. There are significant disjunctions between the “blunt” tools of end-of-life care policy and the everyday experiences of the dying and death of an elderly patient and an urgent need to improve end-of-life care for our oldest generations.Peer reviewe

Transferring patients home to die : what is the potential population in UK critical care units?

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/OBJECTIVES: Most people when asked, express a preference to die at home, but little is known about whether this is an option for critically ill patients. A retrospective cohort study was undertaken to describe the size and characteristics of the critical care population who could potentially be transferred home to die if they expressed such a wish. METHODS: Medical notes of all patients who died in, or within 5 days of discharge from seven critical care units across two hospital sites over a 12-month period were reviewed. Inclusion/exclusion criteria were developed and applied to identify the number of patients who had potential to be transferred home to die and demographic and clinical data (eg, conscious state, respiratory and cardiac support therapies) collected. RESULTS: 7844 patients were admitted over a 12-month period. 422 (5.4%) patients died. Using the criteria developed 100 (23.7%) patients could have potentially been transferred home to die. Of these 41 (41%) patients were diagnosed with respiratory disease. 53 (53%) patients were conscious, 47 (47%) patients were self-ventilating breathing room air/oxygen via a mask. 20 (20%) patients were ventilated via an endotracheal tube. 76 (76%) patients were not requiring inotropes/vasopressors. Mean time between discussion about treatment withdrawal and time of death was 36.4 h (SD=46.48). No patients in this cohort were transferred home. CONCLUSIONS: A little over 20% of patients dying in critical care demonstrate potential to be transferred home to die. Staff should actively consider the practice of transferring home as an option for care at end of life for these patients.Final Published versio

End-of-life care in UK care homes: a systematic review of the literature

Background The number of people requiring end-of-life care provision in care homes has grown significantly. There is a need for a systematic examination of individual studies to provide more comprehensive information about contemporary care provision. Aim The aim of this study was to systematically review studies that describe end-of-life care in UK care homes. Method A systematic PRISMA review of the literature published between 2008 and April 2017 was carried out. A total of 14 studies were included in the review. Results A number of areas of concern were identified in the literature in relation to the phases of dying during end-of-life care: end-of-life pre-planning processes; understandings of end-of-life care; and interprofessional end-of-life care provision. Conclusions Given that the problems identified in the literature concerning end-of-life care of residents in care homes are similar to those encountered in other healthcare environments, there is logic in considering how generalised solutions that have been proposed could be applied to the specifics of care homes. Further research is necessary to explore how barriers to good end-of-life care can be mitigated, and facilitators strengthened

Palliative care for people with non-malignant respiratory disease and their carers: a review of the current evidence

© The Author(s) 2019. Background: Internationally, non-malignant respiratory disease is on the increase. However, although palliative care is recommended as an appropriate healthcare option for this client group, evidence suggests that these patients and their carers do not receive the same standards of palliative care as patients with a malignant lung condition. Aim: The aim of this review was to provide a critical overview of the current evidence base in relation to the palliative service provision for people with non-malignant respiratory disease and their carers. Methods: A review of the literature was conducted in July 2015 and updated in October 2017 and focused on the palliative care service provision for patients with interstitial lung disease, chronic obstructive pulmonary disease and bronchiectasis. Results: In total, 71 empirical studies were included in the review and grouped into two main themes: patient and carer’s bio-psychosocial symptom needs and management, and palliative care service provision for patients with non-malignant respiratory disease and their carers. Conclusion: The majority of palliative research focuses on patients with a diagnosis of chronic obstructive pulmonary disease. A deeper insight is required into the palliative service provision experienced by those with other forms of non-malignant respiratory disease such as bronchiectasis and interstitial lung disease

Perceived needs for support among care home staff providing end of life care for people with dementia: a qualitative study.

This study revealed rich and complex understandings of the practice dimensions of caring for people with dementia at the end of life and the impact these have on staff. There is a need to develop effective psychosocial interventions that focus on emotional support for care home staff. There will be challenges in providing this in employment settings that are generally low paid, low status, have high turnover and are reliant on temporary or migrant staff, where training is not rewarded, mandatory or culturally valued

Australian health policy and end of life care for people with chronic disease: An analysis

End of life care for people with advanced chronic disease is a growing international imperative, with the majority of deaths in the world now related to chronic disease. The provision of care that meets the needs of people with advanced chronic disease must be guided by appropriate policy. The key policy areas impacting directly on end of life care are related to chronic disease, palliative care and, increasingly, aged care. This paper describes the outcomes of an audit of Australian chronic disease and end of life/palliative care policies. We identified that chronic disease health policies/strategies demonstrate a focus on prevention, early intervention and management, with scant recognition of end of life care needs. The majority assume that a referral to palliative care will address end of life care needs for people with chronic disease. By contrast, palliative care policies recognise the need for the incorporation of a palliative approach into advanced chronic disease care, but there are few connections between these two policy areas. Whilst palliative care policies intersect with carer and advance care planning policies, chronic disease policy does not. Key concerns requiring consideration when developing policy in this area are discussed and possible policy options identified.Teresa Burgess, Annette Braunack-Mayer, Gregory B. Crawford, Justin Beilb

Implementing a quality improvement programme in palliative care in care homes: a qualitative study

<p>Abstract</p> <p>Background</p> <p>An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care.</p> <p>Methods</p> <p>Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole.</p> <p>Results</p> <p>Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death.</p> <p>Conclusions</p> <p>Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions.</p

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