What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

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An examination of home-based end-of-life care for cancer patients: a qualitative study

BMC Palliative Care ◽

10.1186/s12904-019-0501-y ◽

2019 ◽

Vol 18 (1) ◽

Cited By ~ 1

Author(s):

Xiao Bin Lai ◽

Li Qun Chen ◽

Shu Hui Chen ◽

Hai Ou Xia

Keyword(s):

Health Service ◽

Qualitative Study ◽

Community Health ◽

End Of Life ◽

Cancer Patients ◽

End Of Life Care ◽

Community Health Service ◽

Life Care ◽

Care Providers ◽

Home Based

Abstract Background Only a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care. Methods This was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019. Results Four themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient’s condition, managing the patient’s symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care. Conclusions Several issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.

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Hospital at Home: Home-Based end-of-Life Care

Journal of Pain & Palliative Care Pharmacotherapy ◽

10.3109/15360288.2011.626634 ◽

2011 ◽

Vol 25 (4) ◽

pp. 375-376

Author(s):

Philip J. Wiffen

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Home Based ◽

Hospital At Home ◽

At Home

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The importance of identifying preferred place of death

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2015-000878 ◽

2015 ◽

Vol 9 (1) ◽

pp. 84-91 ◽

Cited By ~ 17

Author(s):

Maimoona Ali ◽

Margred Capel ◽

Gareth Jones ◽

Terri Gazi

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Care Service ◽

Healthcare Providers ◽

Palliative Care Service ◽

Service Evaluation ◽

Place Of Death ◽

Life Care ◽

At Home

ObjectivesThe majority of people would prefer to die at home and the stated intentions of both statutory and voluntary healthcare providers aim to support this. This service evaluation compared the preferred and actual place of death of patients known to a specialist community palliative care service.DesignAll deaths of patients (n=2176) known to the specialist palliative care service over a 5-year period were examined through service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when the patients did not achieve this preference.ResultsBetween 2009 and 2013, 73% of patients who expressed a choice about their preferred place of death and 69.3% who wanted to die at home were able to achieve their preferences. During the course of their illness, 9.5% of patients changed their preference for place of death. 30% of patients either refused to discuss or no preference was elicited for place of death.ConclusionsDirect enquiry and identification of preferences for end-of-life care is associated with patients achieving their preference for place of death. Patients whose preferred place of death was unknown were more likely to be admitted to hospital for end-of-life care.

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The Efficacy of Palliative Care Education and Training in Primary Care Settings: A Scoping Review of the Literature

Innovation in Aging ◽

10.1093/geroni/igaa057.1443 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 446-446

Author(s):

Jessica Hsieh ◽

Raza Mirza ◽

Lynn McDonald ◽

Christopher Klinger

Keyword(s):

Primary Care ◽

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Care Service ◽

Education And Training ◽

Life Care ◽

Care Providers ◽

Palliative Care Education ◽

And Training

Abstract Primary care providers play an important role in palliative care service provision. A scoping review of the literature was undertaken in an attempt to gain insight into and awareness of palliative education and training needs in primary care settings. Four scientific databases covering the medical and social science fields were searched, alongside Grey literature. A total of 5,109 hits were generated, leading to 2,875 titles for individual review. Of these, 33 articles were included in the final review. Five major themes were identified: (1) communication skills; (2) knowledge of spiritual/psychosocial needs; (3) pain and symptom management; (4) cultural proficiency; and (5) experience working within interdisciplinary teams. Many primary care practitioners felt inadequately trained in palliative care and felt unprepared to provide the necessary care. Specifically, poor communication between healthcare professionals and patients were found to adversely affect the level of palliative care that is provided. Additionally, practical experience in palliative/end-of-life care was cited as one of the most beneficial methods in helping to improve knowledge about and ability to practice in the field. The majority of articles emphasized the need for education and training programs to enhance the quality of palliative/end-of-life care service provision. Palliative care education appeared to have numerous benefits, including enhancing providers’ knowledge of and attitudes towards this subject, ability to provide palliative/end-of-life care, and self-perception of preparedness. As the landscape of education needs are constantly changing, this review serves as one of the steps in an ongoing evaluation of palliative care providers’ training needs.

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Home or hospital as the place of end-of-life care and death: A grounded theory study of parents’ decision-making

Palliative Medicine ◽

10.1177/0269216320967547 ◽

2020 ◽

pp. 026921632096754

Author(s):

Danai Papadatou ◽

Vasiliki Kalliani ◽

Eleni Karakosta ◽

Panagiota Liakopoulou ◽

Myra Bluebond-Langner

Keyword(s):

Decision Making ◽

Grounded Theory ◽

End Of Life ◽

End Of Life Care ◽

Professional Competence ◽

Life Care ◽

Related Factors ◽

Grounded Theory Study ◽

Bereaved Parents ◽

At Home

Background: While several studies have examined ‘what’ families want with regard to the place of a child’s end-of-life care and death, few have explored ‘how’ parents reach a decision. Aims: (1) to develop a model explaining how parents of a child with a life-threatening illness in Greece decide about the place of end-of-life care and death; (2) to identify the factors affecting decision-making; (3) to consider the implications for clinical practice. Design: Grounded theory study of bereaved parents using semi-structured open-ended interviews following Strauss and Corbin’s principles of data collection and analysis. Setting/participants: Semi-structured interviews with 36 bereaved parents of 22 children who died at home ( n = 9) or in a paediatric hospital ( n = 13) in Athens, Greece. Results: (1) Decisions regarding place of care and death were reached in one of four ways: consensus, accommodation, imposition of professional decisions on parents or imposition of parents’ decisions without including professionals. (2) Six factors were identified as affecting decisions: awareness of dying, perceived parental caregiving competence, perceived professional competence, parents’ view of symptom management, timing of decision-making, and being a ‘good parent’. (3) Decisions were clear-cut or shifting. Few parents did not engage in decisions. Conclusion: Parents’ decisions about place of end-of-life care and death are affected by personal, interpersonal, timing and disease-related factors. Parents are best supported in decision-making when information is presented clearly and honestly with recognition of what acting as ‘good parents’ means to them, and opportunities to enhance their caregiving competence to care for their child at home, if they choose so.

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