Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm (a classifier) and a causal probabilistic model (a credal network) for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems key. Early initiation of family-centred palliative care and provision of specialist palliative home care for patients who wish to die at home are suggested. Keywords Cancer; End-of-life care; Palliative Home care; Place of death; Communication; Family caregivers; Patient preference; Bayesian networks; Credal networks; Bayesian classifiers

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‘No place like home?’ A qualitative study of the experience of sense of place among cancer patients near the end of life

Health & Social Care in the Community ◽

10.1111/hsc.13526 ◽

2021 ◽

Author(s):

Adi Ivzori Erel ◽

Miri Cohen

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Cancer Patients ◽

Sense Of Place

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Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

Palliative Medicine ◽

10.1177/0269216316673552 ◽

2016 ◽

Vol 31 (8) ◽

pp. 726-733 ◽

Cited By ~ 24

Author(s):

Nathan Davies ◽

Greta Rait ◽

Laura Maio ◽

Steve Iliffe

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Psychological Impact ◽

Third Sector ◽

Life Care ◽

People With Dementia ◽

Diagnosis Of Dementia ◽

Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

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Symptom Experiences: Perceptual Accuracy Between Advanced-Stage Cancer Patients and Family Caregivers in the Home Care Setting

Journal of Clinical Oncology ◽

10.1200/jco.2002.01.153 ◽

2002 ◽

Vol 20 (16) ◽

pp. 3495-3507 ◽

Cited By ~ 80

Author(s):

Michelle M. Lobchuk ◽

Lesley F. Degner

Keyword(s):

Home Care ◽

Cancer Patients ◽

Family Caregivers ◽

Care Setting ◽

Physical Symptoms ◽

Absolute Difference ◽

Advanced Stage ◽

Convenience Sample ◽

Symptom Experiences ◽

Advanced Stage Cancer

PURPOSE: This study used a comparative descriptive design to compare family caregivers’ and advanced-stage cancer patients’ perceptions of patients’ multidimensional symptom experiences on presence, frequency, severity, and distress. PATIENTS AND METHODS: A convenience sample of 98 dyads, composed of advanced-stage heterogeneous cancer patients and their caregivers, completed the Memorial Symptom Assessment Scale in the home care setting on a one-time basis. This scale is a 32-item Likert-type scale for assessing the presence, frequency, severity, and distress arising from symptoms in cancer patients. RESULTS: There was confirmation of trends previously described in related studies where, for example, caregivers tend to overreport on symptom experiences. However, the degree of absolute difference between patient and caregiver responses was normally around 1 unit (on a theoretical range of 0 to 4 units). Levels of patient-caregiver agreement were better on more concrete questions related to symptom frequency, severity, and distress than on broad questions related to the presence of a symptom. Patients and caregivers achieved better levels of agreement on physical versus psychological symptoms. CONCLUSION: The findings indicated that family caregivers can provide reasonable proxy or complementary reports on patient symptom experiences of frequency, severity, and distress. However, family caregivers have greater difficulty in achieving high levels of accuracy on psychological versus physical symptoms.

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“I see myself as part of the team” – family caregivers’ contribution to safety in advanced home care

BMC Nursing ◽

10.1186/s12912-018-0308-9 ◽

2018 ◽

Vol 17 (1) ◽

Cited By ~ 1

Author(s):

Christiane Schaepe ◽

Michael Ewers

Keyword(s):

Home Care ◽

Family Caregivers ◽

Advanced Home Care

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Death attitudes and truth disclosure: A survey of family caregivers of elders with terminal cancer in China

Nursing Ethics ◽

10.1177/0969733018809805 ◽

2018 ◽

Vol 26 (7-8) ◽

pp. 1968-1975 ◽

Cited By ~ 4

Author(s):

Yong Tang

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Quantitative Method ◽

Bad News ◽

Background Information ◽

Terminal Cancer ◽

Death Attitudes ◽

Truth Disclosure ◽

Primary Family

Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers’ attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers’ inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers’ background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers’ death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers’ attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers’ lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers.

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Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

10.21203/rs.3.rs-18452/v2 ◽

2020 ◽

Author(s):

Naomi Dhollander ◽

Tinne Smets ◽

Aline De Vleminck ◽

Lore Lapeire ◽

Koen Pardon ◽

...

Keyword(s):

Home Care ◽

Cancer Patients ◽

Family Caregivers ◽

Advanced Cancer ◽

Health Care Providers ◽

Control Group ◽

Care Providers ◽

Advanced Cancer Patients ◽

Palliative Home Care ◽

Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

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