Improving specialist palliative care in residential care for older people: a checklist to guide practice

Forbat L, Chapman M, Lovell C, et al. Improving specialist palliative care in residential care for older people: a checklist to guide practice. BMJ Supportive & Palliative Care Published Online First: 02 August 2017. doi: 10.1136/bmjspcare-2017-001332

Objectives Palliative care needs rounds are triage meetings that have been introduced in residential care for older adults to help identify and prioritise care for people most at risk for unplanned dying with inadequately controlled symptoms. This study sought to generate an evidence-based checklist in order to support specialist palliative care clinicians integrate care in residential nursing homes for older people.

Methods A grounded theory ethnographic study, involving non-participant observation and qualitative interviews. The study was conducted at four residential facilities for older people in one city. Observations and recordings of 15 meetings were made, and complimented by 13 interviews with staff attending the needs rounds.

Results The palliative care needs round checklist is presented, alongside rich description of how needs rounds are conducted. Extracts from interviews with needs rounds participants illustrate the choice of items within the checklist and their importance in supporting the evolution towards efficient and effective high-quality specialist palliative care input to the care of older people living in residential care.

Conclusions The checklist can be used to support the integration of specialist palliative care into residential care to drive up quality care, provide staff with focused case-based education, maximise planning and reduce symptom burden for people at end of life.

Barriers and facilitators to achieving home death

The aim of this study is to explore the barriers and facilitators to patients achieving death at home | BMJ Supportive & Palliative Care

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Methods: In-depth, semistructured interviews with end-of-life care experts were conducted to develop an insight into the barriers and facilitators to achieving death at home. Thirty-three interviews were conducted compromising of a mixture of face-to-face and tele interviews. Experts included healthcare professionals working in the community, hospital and policy/academic settings. Thematic analysis was undertaken on interview transcripts.

Results: Three overarching themes, further divided into a total of 12 subthemes were identified. The three themes were ‘managing people’, ‘education’ and ‘planning’. The ‘managing people’ theme included subthemes of patient preferences and family influences; the ‘education’ theme encompassed knowledge and training, perceptions of death and communication and the ‘planning’ theme contained seven subthemes including ‘coordination’, ‘resources’ and ‘cost’.

Conclusions: Multiple barriers and facilitators to achieving death at home were identified in this study. Of particular significance was the identification of the fear and stigma associated with death among doctors, patients and their families serving as a barrier to home death, not previously identified in the literature. Additionally, the importance of social networks and resource provision were highlighted as key in influencing patient death at home.

Full reference: Sayma, M. et al. (2017) A qualitative inquiry into the barriers and facilitators to achieving home death. BMJ Supportive & Palliative Care. Published Online First: 31 July 2017.

Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care | Journal of Social Work in End-of-Life & Palliative Care

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Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered.

This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process.

The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.

Full reference:  Kallianis, V. et al. (2017) “Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care. Journal of Social Work in End-of-Life & Palliative Care. Published online: 1 June 2017

A collaborative approach to facilitate professionals to support the breathless patient

Breathlessness is a major problem for people in their last weeks of life. Breathlessness is considered to be multidimensional with physical, psychological, emotional, social and spiritual factors all playing a part | BMJ Supportive & Palliative Care

B0010196 Visualising the human breath ("Breathe"), Artwork

Image source: Jayne Wilton – Wellcome Images // CC BY 4.0

Image shows artwork – visualising the human breath (“Breathe”)

Objectives: It has been recognised that specific training to health professionals is beneficial in order to improve the care for patients with breathlessness. Breathlessness courses have tended to focus on senior nurses. A new flexible and collaborative training course was designed to include a wider range of nurses and other health professionals in hospital, hospice, primary care and community settings. The aim of the ‘Practical Skills to Support the Breathless Patient’ programme was to make patients and carers feel better supported in their breathlessness, for health professionals to develop confidence and skills in using proven interventions, and to adopt a flexible educational design that could be adapted to different contexts.

Methods: The course is learner-centred and teaching methods encourage interaction and participation via a mix of lectures and discussions with practical skills-focused, experiential workshops in smaller groups. Case study work was included to integrate learning with participants’ practice environment. Evaluation is built in during the course, so adaptations can be made throughout to respond to changing learner needs.

Results: Participants reported increased confidence in terms of knowledge and applying this within everyday practice. The theory-practice dynamic worked well within each participant‘ specific work context in particular through the case study approach.

Conclusions: The course developed a number of innovative approaches, such as multi-disciplinary learning groups, regular feedback loops, reflexive learning about putting theory into practice and long-term follow-up. Combining these elements increases professionals’ confidence and sustains new clinical practice.

Full reference: Shaw, V. et al. (2017) A collaborative approach to facilitate professionals to support the breathless patient. BMJ Supportive & Palliative Care Published Online: 22 July 2017

Should heart failure be regarded as a terminal illness requiring palliative care?

A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management | BMJ Supportive & Palliative Care

Objectives: Communication and planning for heart failure (HF) care near the end of life is known to be complex. Little is known about how the patient experience of palliative assessment and communication needs change over time, and how this might inform management. Our aim was to explore experiences of giving or receiving a prognosis and advanced palliative care planning (ACP) for those with HF.

Methods: We carried out a longitudinal grounded theory study, employing in-depth interviews with 14 clinicians (primary and secondary care) and observations of clinic and home appointments, followed by a series of interviews with 13 patients with HF and 9 carers.

Results: Overall, the majority of participants rejected notions of HF as a terminal illness in favour of a focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Clinicians revealed frustration about the uncertain nature of HF prognosis, leading to difficulties in planning. Others highlighted the need to deliver problem-based, individualised care but felt constrained sometimes by the lack of multidisciplinary ACP. Patients reported an absence of prognostic discussions with clinicians.

Conclusions: This is the first study exploring the experiences of prognostic communication at all stages of HF. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. Findings support the incorporation of a problem-based approach to management, which recognises the importance of everyday functioning for patients and carers as well as the opportunity for ACP.

Full reference: Stocker, R. et al. (2017) Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management. BMJ Supportive & Palliative Care. Published Online: 21 July 2017

The impact of healthcare professionals’ personality and religious beliefs on the decisions to forego life sustaining treatments

The aim of this study was to assess the opinion of intensive care unit (ICU) personnel and the impact of their personality and religious beliefs on decisions to forego life-sustaining treatments (DFLSTs) | BMJ Open

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Results: The participation rate was 65.7%. Significant differences in DFLSTs between doctors and nurses were identified. 71.4% of doctors and 59.8% of nurses stated that the family was not properly informed about DFLST and the main reason was the family’s inability to understand medical details. 51% of doctors expressed fear of litigation and 47% of them declared that this concern influenced the information given to family and nursing staff. 7.5% of the nurses considered DFLSTs dangerous, criminal or illegal. Multivariate logistic regression identified that to be a nurse and to have a high neuroticism score were independent predictors for preferring the term ‘passive euthanasia’ over ‘futile care’ (OR 4.41, 95% CI 2.21 to 8.82, p<0.001, and OR 1.59, 95% CI 1.03 to 2.72, p<0.05, respectively). Furthermore, to be a nurse and to have a high-trust religious profile were related to unwillingness to withdraw mechanical ventilation. Fear of litigation and non-disclosure of the information to the family in case of DFLST were associated with a psychoticism personality trait (OR 2.45, 95% CI 1.25 to 4.80, p<0.05).

Conclusion: We demonstrate that fear of litigation is a major barrier to properly informing a patient’s relatives and nursing staff. Furthermore, aspects of personality and religious beliefs influence the attitudes of ICU personnel when making decisions to forego life-sustaining treatments.

Full reference: Ntantana, A, et al. (2017) The impact of healthcare professionals’ personality and religious beliefs on the decisions to forego life sustaining treatments: an observational, multicentre, cross-sectional study in Greek intensive care units. BMJ Open. 7:e013916.

The care of older people in care homes

National Institute for Health Research (NIHR) Themed Review: Advancing Care: Research with care homes

There are more than twice as many people living in care homes in England and Wales, than there are people staying in hospital. Yet we know far more about effective treatments in hospital and less about what works most effectively to improve care for older people in care homes. Research in care homes is a relatively new and emerging field.

Advancing Care provides an overview of recent NIHR research on improving the health and care of care home residents. It highlights current research taking place now and explores new approaches being developed in this important area.

The review brings together NIHR research on three themes relating to the care of older people in care homes: Living well – maintaining good health and quality of life, ageing well – managing long term conditions associated with ageing, and dying well – ensuring a good quality end of life. It features:

  • 23 published studies
  • 21 ongoing studies
  • Quotes from care home owners, managers, staff and researchers
  • Where next for care home research?