Seow, H. and Bainbridge, D. | A Review of the Essential Components of Quality Palliative Care in the Home | Journal of Palliative Medicine. January 2018, 21(S1): S-37-S-44
Objective: The home is an important and often preferable setting of palliative care. While much research has demonstrated the benefits of specialized palliative homecare on patient and system outcomes, there has been little delineation of the underlying components of these efficacious programs. We synthesized the essential elements of palliative homecare from a combined review of successful programs, perspectives of patients and caregivers, and views of healthcare providers in palliative care.
Methods: Five unique palliative homecare studies were included in the rapid review and synthesis—(1) systematic review of the components of efficacious programs; (2) in-depth analysis of 11 effective community-based teams; (3) survey of bereaved caregivers; (4) survey of the general public; and (5) interviews of providers and administrators. A qualitative approach was used to identify transcending themes across the studies.
Results: Six essential elements of quality palliative homecare were common across the studies: (1) Integrated teamwork; (2) Management of pain and physical symptoms; (3) Holistic care; (4) Caring, compassionate, and skilled providers; (5) Timely and responsive care; and (6) Patient and family preparedness.
Conclusions: Our metasynthesis of effective palliative homecare models, as well as, the values of those who use and provide these services, illuminates the underpinning elements of quality home-based care for patients with a life-limiting illness. However, the application of these elements must be relevant to the local community context. To create impactful, sustainable homecare programs, it is critical to capitalize on existing processes, partnerships, and assets.
Dying comfortably in very old age with or without dementia in different care settings – a representative “older old” population study | BMC Geriatrics | published online 5th October 2017
A study from the University of Cambridge in the UK found that elderly people were four times more likely to die comfortably if their last days were spent at home or in a “care home”—defined to be either a residential care home or a nursing home—than if they were in a hospital.
Jane Fleming, a senior research associate at Cambridge, and colleagues, reported in BMC Geriatrics about their retrospective analysis of data from 180 deceased participants, ages 79-107 years. Relatives and caregivers were asked about the patients’ comfort level. The researchers learned only 10% of all participants died without pain or symptoms of distress.
The aim of this study is to explore the barriers and facilitators to patients achieving death at home | BMJ Supportive & Palliative Care
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.
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
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.
Patients with severe heart failure suffer from a high symptom burden and high mortality | BMJ Supportive & Palliative Care
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 IIIâ€“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.
Sarmento, V.P. et al. BMJ Supportive & Palliative Care. Published Online: 23 February 2017
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.
Pottle, J. et al. BMJ Supportive & Palliative Care. Published online: 16 January
Objectives: 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.