A grounded theory study: Exploring health care professionals decision making when managing end stage heart failure care

Aim: To explore how healthcare professionals in an acute medical setting make decisions when managing the care of patients diagnosed with end stage heart failure, and how these decisions impact directly on the patient's end of life experience. Design: A constructivist grounded theory approach was adopted. Method: A purposive sample was used to recruit participants that included 16 registered nurses, 15 doctors and 16 patients. Data were collected using semi-structured interviews and focus groups over a 12-month period of fieldwork concluding in 2017. The interviews were recorded and transcribed and the data were analysed using constant comparison and QSR NVivo. Findings: Four theoretical categories emerged from the data to explain how healthcare professionals and patients negotiated the process of decision making when considering end of life care. These were: signposting symptoms, organizing care, being informed and recognizing dying. The themes revolved around a core category ‘a vicious cycle of heart failure care’. Conclusion: Healthcare professionals need to engage in informed decision making with patients to break this ‘vicious cycle of care’ by identifying key stages in the terminal phase of heart failure and correctly signposting the patient to the most suitable healthcare care professional for intervention. Impact: This study provides a theoretical framework to explain a ‘vicious cycle of care’ for patients diagnosed with end stage heart failure. This theory grounded in data demonstrates the need for both acute and primary care to design an integrative end of life care pathway for heart failure patients which addresses the need for early shared decision making between the healthcare professional, family and the patient when it comes to end of life conversations

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

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

Stroke and Palliative Care

Meeting the palliative care needs of stroke patients requires stroke specialists to develop enhanced knowledge and skills in palliation in order to address the specific challenges that stroke presents. This requires investment from within the stroke field and a commitment to a more holistic approach to care which extends beyond rehabilitation goals. This chapter identifies a range of challenges in delivering palliative care for stroke patients. It considers generic palliative care pathways and tools, and their suitability in the context of stroke. The chapter presents case studies which illustrate how some of these care pathways and tools could be used with stroke patients. It discusses three palliative care approaches: the Liverpool Care Pathway; the Gold Standards Framework; and the Assessment, Management, Best practice, Engagement, and Recovery care bundle. The chapter concludes with recommendations to guide the development of improved palliative care in stroke

Improving training in spiritual care:a qualitative study exploring patient perceptions of professional educational requirements

Healthcare professionals express difficulties in delivering spiritual care, despite it being a core component of palliative care national policies. The patient perspective on professional training to address difficulties has not previously been sought. The aim of this study is to describe patient suggestions for development of training to deliver spiritual care. Qualitative semi-structured in-depth 'palliative patient' interviews (n = 20) were analysed thematically. Training suggestions encompassed practical care delivery. Patients supported staff who introduced questions about spiritual needs, and they expected opportunities to engage in spiritual care discussions. The 'right' attitude for spiritual care delivery was defined as being non-judgemental, providing integrated care and showing interest in individuals. Training issues included patient perspectives of boundaries between personal and professional roles. This study provides 'palliative patient' perspectives to strengthen recommended models of spiritual care delivery. It shows that user opinions on training can be helpful not only in deciding objectives but also how to achieve them