Palliative care in nursing homes and at home: an overview of reviews
Systematic review
|Published
The Norwegian Ministry of Health and Care Services commissioned the Norwegian Institute of Public Health to summarize evidence on the effects of palliative care interventions in nursing homes and in patients' homes.
Key message
The Norwegian Ministry of Health and Care Services commissioned the Norwegian Institute of Public Health to summarize evidence on the effects of palliative care interventions in nursing homes and in patients' homes.
We conducted an overview of systematic reviews. In October 2020, we conducted an extensive literature search. Two researchers independently selected reviews for inclusion, extracted data, and assessed risk of bias and the quality of evidence for all outcomes using the GRADE approach.
Five systematic reviews were included. The population was mainly older patients with cancer, while caregivers were included in two reviews. Two reviews studied home-based palliative care, one studied palliative care in nursing homes, whereas the two remaining reviews evaluated horticulture or alternative therapies, such as massage, reflexology, and aromatherapy. The reviews reported outcome data for patients’ and caregivers’ quality of life, adverse events, place of death, patient satisfaction, hospitalization, disability, depression, and anxiety. The results indicated that:
- It is uncertain whether home-based or nursing home-based palliative care have an effect on patients with different diagnoses and their caregivers.
- It is uncertain whether palliative care given in a horticultural setting or alternative therapies has an effect on patients with different diagnoses.
- There is a lack of summarized evidence about the effects of palliative care for children and youth.
We have very low confidence in the results, and the true effect is likely to be substantially different from those reported. Our certainty in the evidence was downgraded due to methodological biases, imprecision, and limited generalizability to the Norwegian context.
Summary
Background
Palliative care is an important part of health care and is gaining relevance due to the growth of the aging population in Norway. Many people want to spend as much time as possible at home or near home, and many want to die at home. Nowadays, around half of all deaths in Norway occur in nursing homes and about 13% occur in the patient's own home. We conducted an overview of reviews to summarize evidence on the effects of palliative care in nursing homes and at patients' homes. This project answered the following questions: What are the effects of palliative care in nursing homes and at home for adults, and what are the effects of palliative care nursing homes and at home for children and youth?
Objective
To summarize evidence on the effects of palliative care in nursing homes and at home.
Method
Literature searches in relevant databases were run in October 2020. We included systematic reviews with high methodological quality, that evaluated the effects of palliative care interventions according to current definitions in either patients or caregivers. Inclusion was restricted to interventions provided in nursing homes or at patient’s home. We excluded pharmacological interventions. Relevant outcomes were patients 'and caregivers' quality of life, adverse events, place of death, patient satisfaction, hospitalization, disability, depression, and anxiety. Two independent reviewers screened the retrieved references and data extraction was double‐checked. We conducted independent risk of bias assessment of the included reviews by using validated checklists. We grouped data extracted from the reviews according to relevant comparisons, performed descriptive analyses, and presented the results in text and tables. We assessed the confidence in each outcome using the GRADE approach (Grading of Recommendations Assessment, Development, and Evaluation). Using GRADE, we describe in standardized terms the extent to which we can trust that the results show the true effect of the interventions we are evaluating.
Results
Five systematic reviews, published between 2011-2020, met our inclusion criteria. These included 79 primary studies where 64 were relevant to this project. All primary studies were RCTs, mostly conducted in the United States and the United Kingdom. The population was mainly older patients with cancer, while caregivers were included in two reviews. A total of 19 396 participants were included and the majority were women. 4 315 of the participants were informal caregivers. Two reviews evaluated home-based palliative care through visits by palliative care teams or directed support for caregivers, one review focused on palliative care in nursing homes, whereas the remaining two reviews studied the effects of horticulture and alternative therapies, such as massage, reflexology, and aromatherapy. The comparisons were usual care, waiting list, placebo, or active controls. Four reviews reported on patients 'quality of life, while two reported on caregivers' quality of life. Other outcome measures were adverse events, place of death, patient satisfaction, hospitalization, disability, depression, and anxiety.
Home-based palliative care
Two reviews addressed this comparison in patients with multiple sclerosis or caregivers of cancer patients. We found no clear evidence of an effect of home-based palliative care compared to usual care in patients' and caregivers’ quality of life, adverse events, hospitalization, disability, depression, and anxiety. We have very low confidence in the results due to methodological biases, such as lack of blinding, high attrition (dropouts), and imprecise effect estimates.
Palliative care in nursing homes
One review studied the effects of palliative care in nursing homes compared to usual care, active controls, and waiting list in both patients with cancer or heart failure and their caregivers. We found no clear evidence of a difference between groups for patients' and caregivers’ quality of life, depression, and anxiety. We have very low confidence in these results due to methodological biases, such as lack of blinding, high attrition, poor reporting of outcome data, as well as high variation and imprecision in the effect estimates.
Horticulture
One review studied this comparison in patients with various diagnoses, such as dementia, severe mental disorders, and stroke. We found no clear evidence of a difference between groups for patients' quality of life, depression, and anxiety. We have very low confidence in these results due to methodological biases, such as lack of blinding, poor reporting of outcome data, limited transferability to the Norwegian context, and imprecision in the effect estimates.
Alternative therapies
One review studied the effects of alternative therapies, such as massage, reflexology, and aromatherapy compared to usual care, placebo, or other active controls in patients with different diagnoses, mainly cancer. We found no clear evidence of a difference between groups for patients' quality of life, patient satisfaction, adverse events, and anxiety. We have very low confidence in these results due to methodological biases, such as lack of reporting of both randomization procedures and blinding, limited transferability to the Norwegian context, and imprecision in the effect estimates.
Discussion
The findings in this report partly answer the scope of the commission, and they mainly apply to older patients with cancer, and to a small extent to their caregivers. We found no systematic reviews that studied the effect of palliative care in children and youth. The included reviews had several methodological biases, such as a lack of reporting of effect data and methods and evaluated interventions that are to a small extent generalizable to the Norwegian context. These limitations preclude the possibilities of this body of evidence to inform decision making processes.
This report was conducted through both validated research methods and close dialogue between researchers at FHI, the commissioner, clinical experts in palliative care, and a representative from the national association for palliative medicine. We found scarce information about key aspects of palliative care, such as the content and scope of the interventions, and the role of multidisciplinary collaboration. This limitation in the level of detail in the interventions is inherent to overviews of reviews and might be tackled by other studies like scoping reviews. There is a lack of summarized evidence about the effect data for advanced care planning, care pathway, or multidisciplinary palliative teams provided in nursing homes or at patients’ home.
Conclusion
Overall, we are uncertain of the effect of palliative care in nursing homes and at patients' homes compared with usual care or other active controls on all outcomes studied. We have very low confidence in these results due to methodological biases, such as lack of blinding, poor reporting of outcome data, lack of precision in the effect estimates, and limited generalizability to the Norwegian context. There is a lack of summarized evidence about the effects of palliative care in children and youth.
Further research is needed before we can draw more certain conclusions. To improve the knowledge base, future research should focus on transparent reporting of both methods and results, the use of sensitive and context-specific outcome measures, and ensure that children and youth, and their caregivers, are represented. Our conclusion aligns with findings from previous systematic reviews.
