Essential Elements of Home-based Palliative Care Model: A Rapid Review

INTRODUCTION

The rapid rise in the cases of chronic illnesses is mostly attributed to non-communicable diseases.^[1,2] Chronic illness needs long-term care, further requiring a care team and higher cost utilisation for longer hospital stays.^[3] To reduce the number of hospital days and provide efficient care by relieving the signs and symptoms of the patient, the home-based palliative care model is effective.^[4] Home-based care is not only patient-centred care but also focuses on increasing the patient’s quality of life and giving them painless death.^[5] Although many studies have supported the model of home care in terms of patient satisfaction and cost utilisation, there is a need for delineation of the essential elements to effectively process the model.^[6]

The community-based approach to delivering home care has meant to improve patient outcomes while reducing the cost of care.^[6] Home-based care can be proven effective in terms of providing potent psychosocial care by the carers which is not possible in long-term hospital stays.^[7] To provide palliative care at home, it is necessary to address the elements that are essential for the patient and the family members for high-quality care.^[8] The addition of appropriate elements in the home-care program will lead to the successful implementation of the same.

A total of 754 articles were identified. Out of which 503 articles were related to models of palliative care. After cleaning the data, seven studies were found to be associated with the essential elements of home-based palliative care. These studies were based on four factors: perspectives of healthcare providers and caregivers, experiences of nurses and general practitioners, strategies for implementing a home-based palliative care program, and funding and financial support, for rapid review and synthesis. Perspectives of the caregivers are equally important as that of the health-care providers to know the unmet needs of the patients reducing the failure rate and increasing patient satisfaction. The review questions for this study are as follows;

• What are the essential elements required for providing quality home-based palliative care?

• What are the patient’s and caregiver’s needs while receiving palliative care at home?

• How can the elements be implemented into the home-care palliative program?

This article aims to bring out the following outcomes concerning the Indian context;

1. The most effective and essential elements necessary for a home-based model of palliative care

2. Challenges and experiences faced by the patients/ caregivers and the healthcare providers, respectively

3. Reference of important and evident strategies for implementing a home-based palliative care intervention.

METHODS

A rapid review is an alternative to systematic reviews which are performed to stabilise the time constraint and possible bias occurrence.^[9] The rapid review is preferred here to get an overview of the evidence of the essential elements used for the home-care model. This study was undertaken for 8 weeks from 1 June to 31 July 2022. Although the process of rapid review saves time/resources, it has a scope of generating bias due to the restricted literature coverage. Therefore, the studies were selected carefully by searching various databases such as PubMed, Medline, and Cochrane database of systematic reviews. Although there was no quality check, independent screening of citations and abstracts of the included studies was done by both reviewers. The strategy of study selection is shown below [Figure 1]. The first 4 weeks were utilised for searching and reading the literature available in the databases PubMed and Medline. The next 4 weeks were used to critically analyse the systematic reviews from the Cochrane Library and add them as a reference.

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Figure 1:

The strategy for study selection.

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Seven studies were selected for the synthesis, after a review of the palliative home-care programs based on the Indian context. The studies selected were a systematic review of the unmet needs of patients; perceptions of healthcare providers about home-based palliative care; a qualitative study on the perspectives of caregivers; a qualitative study on challenges of home-care nurses and physicians; recommended strategies for implementing a home-based palliative care intervention; CanSupport: a model for home-based palliative care delivery in India and Public, patient’s and carer’s views on palliative and end-of-life care in India. A qualitative method using ‘Thematic Synthesis’ developed by Thomas and Harden was used to synthesise the studies and extract common themes out of them, concluding with seven common and essential elements needed for a home-based palliative care program.^[10] The analysis was done by the authors and the themes identified were discussed with the palliative care specialists and other research scholars. The summary notes were compared and contrasted to derive some common elements synthesised from the studies. Details of the selected studies for synthesis are discussed below in [Table 1].

RESULTS

Common themes were identified from the seven selected studies for review and synthesis. After performing the thematic synthesis as suggested by Thomas and Harden, the results derived seven common essential elements required for providing quality home-based palliative care [Table 2]. Various codes were identified from the selected studies and combined into descriptive and analytical themes. The common themes are further presented in detail to have a better understanding.

DISCUSSION

The review has identified some of the major drawbacks of the home-care palliative model such as the communication gap, trust and safety issues, incompetent health-care professionals, devoid of professional courses and clinical guidelines, and an atomistic approach. Although these common elements are very true in a sense, as it is always situated in the local context applicable.^[19] In a country like India where palliative care is at its developing stage, it needs strong advocacy at the population and the health-care level.^[20] Therefore, palliative care must be included in the courses and curricula of the medical and paramedical students too. As the concept is new, it may take time to build confidence and trust among the beneficiaries at the beginning. Although the most effective way to gain trust is to listen carefully to the patients, varying from person to person. Some patients believe to participate in the treatment decision-making while some prefer to delegate the decision-making role,^[21] while some of them may ask for private time during the treatment which has to be respected in any way.^[22]

Total pain management is a concept consisting of four dimensions, that is, physical, psychological, social, and spiritual care.^[23] No dimension can be treated in isolation.^[24] Physical pain is managed by giving pain-relieving drugs such as opioids or physical therapy, which could be further hindered by the lack or unavailability of opioids in the health centers.^[25] According to the Narcotic and Psychotropic Substances Act of 1985, opioid availability is very much restricted to prevent its misuse. Only a few cancer hospitals are exempted from the licensing procedure; otherwise, it is mandatory to hold a license to avail of an opioid that is morphine.^[26] Psychological care often deals with alleviating the levels of anxiety, stress, depression, and mood swings related to the sickness or in general. The social aspect of care becomes functional when the patient’s social role in the family and society declines or gets replaced. The social network may become infirm due to the stigma of the disease.^[27] Spirituality is usually confused with religion. However, religion is one of the components of the broad term spirituality.^[28]

Apart from all the aspects of care, there is respite care which is considered to be critically important for the caregivers, patients, and the healthcare system. In a recent study, it was noticed that providing respite care enhanced patients’ self-esteem, improved the quality of life for the caregivers, and reduced hospital admission rates.^[29] There are certain limitations to the study. The literature search was limited to some selected studies that mentioned the needs of the palliative care program from the caregivers’ and health-care providers’ perspectives. There were very few studies found in the Indian context so the international models were also considered for the review. However, the themes were found to correspond with the Indian studies as well.^[30]

IMPLICATIONS FOR POLICY AND PRACTICE

Support for family caregivers should be the priority concern of the policymakers. Navigating the care plan through telemedicine and telephonic calls by healthcare professionals will keep the carers updated about the patient’s condition. The navigators also make the carer confident and provide emotional support during situations like pain management.^[31] Given the resource constraints, it is recommended to focus on the primary family carers (identified by the patient) and wherever possible, include the other family members in providing psychosocial and bereavement care.^[32] To ensure quality and coordinated care, a social and healthcare policy should be developed incorporating guidelines for healthcare professionals.

CONCLUSION

The review of the selected literature studies found seven essential elements required for an effective home-based palliative care program, considering the local context. They are as follows; (a) inter-sectoral and inter-professional cooperation; (b) trust and safety; (c) holistic management of death; (d) non-academic palliative care; (e) spiritual care; (f) support to caregivers; and (g) funding and financial support. The common elements identified in this review also correspond with other international studies.^[33,34] The observed elements are believed to be needed during the implementation of any home-based palliative care model.^[35] A successful palliative care model in developing countries like India will prove a model of trust, safety, and high-end quality care for the patients and their family members. At the same time, it is important to strengthen the knowledge of palliative care among healthcare providers and the end-users through various platforms such as institutions, clinics, NGOs, and media.^[36]