Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)

Pottle, Jackie; Hiscock, Julia; Neal, Richard D; Poolman, Marlise

doi:10.1136/bmjspcare-2016-001145

Cited by 19 publications

(30 citation statements)

References 24 publications

(34 reference statements)

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“…Earlier research has shown that the feeling of being unprepared, especially regarding knowledge of symptoms and decisions about medication management, can represent a considerable burden for many family caregivers (Funk et al, ; Rakic et al, ). The family caregivers in our study shared stories indicating that the dying person and his/her caregivers have different needs, and this is well known in the literature (Male, Fergus, & Stephen, ; Pottle et al, ). The need for information and the provision of practical support are two areas where patients' and family caregivers' opinions can differ.…”

Section: Discussionsupporting

confidence: 63%

“…However, family caregivers who provide home‐based care may feel unprepared for the role and often neglect their own needs (Stajduhar & Davies, ). A study from Wales (Pottle, Hiscock, Neal, & Poolman, ) showed that while patients maintained a sense of normality by staying at home, family caregivers felt the opposite; their normality was lost. The patients' views and needs took precedence over those of the family caregivers.…”

Section: Introductionmentioning

confidence: 99%

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Silent voices: Family caregivers' narratives of involvement in palliative care

et al. 2019

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AimTo explore how family caregivers experience involvement in palliative care.DesignA qualitative design with a narrative approach was used.MethodsPurposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid‐Norway between November 2016–May 2017.ResultsWe identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient‐centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow‐up after death. Family caregivers experienced low level of involvement throughout the palliative pathway.ConclusionThe involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home‐based care.

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Section: Discussionsupporting

confidence: 63%

Section: Introductionmentioning

confidence: 99%

Silent voices: Family caregivers' narratives of involvement in palliative care

et al. 2019

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“…HCPs did not often attend proactively to the details of how patients and FCGs felt about managing medicines in the home, as well as the practical difficulties and concerns they confronted while doing so and the tensions and conflicting interests arising between patients and family members. 14,19,167 The challenges involved in managing medicines in the home can be intense, if not overwhelming, especially in the last weeks and days of life. 7,14,16,39,74 However, the realities of care remain overlooked in the policy and public 166 perpetuation of an idealised depiction of care at home as a prerequisite for accomplishing 'a good death'.…”

Section: The Burden Of Treatmentmentioning

confidence: 99%

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Pollock

Wilson

Caswell

et al. 2021

Health Serv Deliv Res

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Background More effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkillers that can have serious side effects. Little is known about how patients and family caregivers manage the physical and emotional work of managing medicines in the home or the support that they receive from health-care professionals and services. Objective To investigate how patients with serious and terminal illness, their family caregivers and the health-care professionals manage complex medication regimens and routines of care in the domestic setting. Design A qualitative study involving (1) semistructured interviews and group discussions with 40 health-care professionals and 21 bereaved family caregivers, (2) 20 patient case studies with up to 4 months’ follow-up and (3) two end-of-project stakeholder workshops. Setting This took place in Nottinghamshire and Leicestershire, UK. Results As patients’ health deteriorated, family caregivers assumed the role of a care co-ordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Health-care professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a health-care system that they felt was complicated and poorly co-ordinated. Having a key health professional to support and guide patients and family caregivers through the system was important to a good experience of care. Limitations The study achieved diversity in the recruitment of patients, with different characteristics relating to the type of illness and socioeconomic circumstances. However, recruitment of participants from ethnically diverse and disadvantaged or hard-to-reach populations was particularly challenging, and we were unable to include as many participants from these groups as had been originally planned. Conclusions The study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life care could be improved: (1) reducing work and responsibility for medicines management and (2) improving co-ordination and communication in health care. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and family caregivers can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the end of life. Future work Priorities for future research include investigating how allocated key professionals could integrate and co-ordinate care and optimise medicines management; the role of domiciliary home care workers in supporting medicines management in end-of-life care; patient and family perspectives and understanding of anticipatory prescribing and their preferences for involvement in decision-making; the experience of medicines management in terminal illness among minority, disadvantaged and hard-to-reach patient groups; and barriers to and facilitators of increased involvement of community pharmacists in palliative and end-of-life care. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 14. See the NIHR Journals Library website for further project information.

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“…HDAH reflects the total time spent out of acute and postacute care settings and is consistent with prior research on patient preferences to spend time at home at the EOL. 15,16,29,30 The COVID-19 pandemic has even further accelerated the push to deliver cancer care in the home environment, 31 highlighting the need to understand and measure how well providers and health systems are performing in providing care that is effective and consistent with patients' wishes. These findings suggest that HDAH is readily measurable, varies meaningfully among patients and providers, and is associated with other indicators of quality, including the use of hospice for patients at the EOL.…”

Section: Hrr Characteristics Associated With Hdah At Eolmentioning

confidence: 99%

Healthy days at home: A population‐based quality measure for cancer patients at the end of life

Lam

Riley

Zheng

et al. 2021

Cancer

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BACKGROUND: Healthy Days at Home (HDAH) is a novel population-based outcome measure. In this study, its use as a potential measure for cancer patients at the end of life (EOL) was explored. METHODS: Patient demographics and health care use among Medicare beneficiaries with cancer who died over the years 2014 to 2017 were identified. The HDAH was calculated by subtracting the following components from 180 days: number of days spent in inpatient and outpatient hospital observation, the emergency room, skilled nursing facilities (SNF), inpatient psychiatry, inpatient rehabilitation, long-term hospitals, and inpatient hospice. How HDAH and its components varied by beneficiary demographics and health care market were evaluated. A patient-level linear regression model with HDAH as the outcome, hospital referral region (HRR) random effects, and market fixed effects were specified, as well as beneficiary age, sex, and comorbidities as covariates. RESULTS: The 294,751 beneficiaries at the EOL showed a mean number of 154.0 HDAH (out of 180 days). Inpatient (10.7 days) and SNF (9.7 days) resulted in the most substantial reductions in HDAH. Males had fewer adjusted HDAH (153.1 vs 155.7, P < .001) than females; Medicaid-eligible patients had fewer HDAH compared with non-Medicaid-eligible patients (152.0 vs 154.9; P < .001). Those with hematologic malignancies had the fewest number of HDAH (148.9). Across HRRs, HDAH ranged from 10.8 fewer to 10.9 more days than the national mean. At the HRR-level, home hospice was associated with greater HDAH, whereas home health was associated with fewer HDAH. CONCLUSIONS: HDAH may be a useful measure to understand, quantify, and improve patient-centered outcomes for cancer patients at EOL.

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Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)

Cited by 19 publications

References 24 publications

Silent voices: Family caregivers' narratives of involvement in palliative care

Silent voices: Family caregivers' narratives of involvement in palliative care

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Healthy days at home: A population‐based quality measure for cancer patients at the end of life

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