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

Integrated heart failure care and palliative care at home

Patients with severe heart failure suffer from a high symptom burden and high mortality | BMJ Supportive & Palliative Care

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Image source: Rick&Brenda Beerhorst – Flickr // CC BY 2.0

Objectives: European and Swedish guidelines for HF care recommend palliative care for these patients. Different models for integrated palliative care and HF care have been described in the literature. No studies were found that qualitatively evaluated these models. The purpose of this study is to describe patients’ experiences of a new model of person-centred integrated HF and palliative care at home.

Method: Interviews were conducted with 12 patients with severe HF (New York Heart Association class III–IV) and included in the research project of Palliative advanced home caRE and heart FailurE caRe (PREFER). Qualitative content analysis was used for data analysis.

Results: Two themes and a total of five categories were identified. The first theme was feeling secure and safe through receiving care at home with the categories: having access to readily available care at home, being followed up continuously and having trust in the team members’ ability to help. The second theme was being acknowledged as both a person and a patient, with the following two categories: being met as a person, participating in decisions about one’s care and receiving help for symptoms of both HF and comorbidities.

Conclusions: Person-centred integrated HF and palliative care provides a secure environment and holistic care for patients with severe HF. This approach is a way to improve the care management in this population.

Full reference: Talabani, N. et al. (2017) Patients’ experiences of person-centred integrated heart failure care and palliative care at home: an interview study. BMJ Supportive & Palliative Care. Published Online First: 7th July 2017.

Home palliative care works: but how?

Sarmento, V.P. et al. BMJ Supportive & Palliative Care. Published Online: 23 February 2017

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Objective: To understand patients and family caregivers’ experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users.

Conclusions: Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care.

Read the full article here

Dying at home of cancer: whose needs are being met?

Pottle, J. et al. BMJ Supportive & Palliative Care. Published online: 16 January

clasped-hands-541849_960_720Objectives: Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: ‘How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)?

Conclusions: We have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life.

Read the full abstract here

Helping people to be cared for and die at home

This Housing LIN Practice Briefing looks at the importance of end of life care delivered at home, describing the context, inequalities in end of life care, examples of good or emerging practice, and recommendations for actions. Funded by Public Health England, it is intended to be a practical guide for those working in mainstream and/or specialist housing, care and support and public health to understand their respective roles, and how they may work together, to help people to have their end of life care wishes met.

Full briefing: End of Life Care: Helping people to be cared for and die at home

Dying at home more peaceful, but requires discussion

For terminally ill cancer patients and their loved ones, dying at home can be more peaceful with less grief among family members. But the option requires talking about preferences, access to a comprehensive home care package, and time off from work for family caregivers, according to a study in BMC Medicine. Barbara Gomes, BSc, MSc, PhD, of the Cicely Saunders Institute at King’s College London, and colleagues questioned 352 bereaved family members of patients who died in the hospital or at home. Wherever they passed away, patients experienced about the same amount of pain.

Full reference:  Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study.  BMC Medicine 2015, 13:235.