Palliative care is the provision of service with an approach that is aimed at improving quality of life of patients and families through prevention and relief of suffering from physical, psychosocial, and spiritual distress. Palliative care, as used here, refers to ongoing patient management by healthcare providers who have expertise in this approach. Palliative care may be provided by interdisciplinary teams who work together to provide a holistic set of interventions to integrate the physical, psychosocial, and spiritual aspects of care.
Gomes, B., Calanzani, N., Curiale, V., McCrone, P., & Higginson, I.J. (2013). Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews, 6, CD007760.
STUDY PURPOSE: To review the evidence regarding effectiveness of home palliative care services for patients and their caregivers
TYPE OF STUDY: Meta-analysis and systematic review
DATABASES USED: 12 electronice databases were searched up to November 2012—Cochrane Central Register of Controlled Trials (CENTRAL); EMBASE; MEDLINE; Cochrane Pain, Palliative, and Supportive Care (PaPaS) Trials Register; Cochrane Effective Practice and Organisation of Care (EPOC) Trials Register; CINAHL; EURONHEED; PsycINFO; Cochrane Database of Systematic Reviews (CDSR); Database of Abstracts of Reviews of Effectiveness (DARE); Health Technology Assessment (HTA) Database; and NHS Economic Evaluation Database (NHS EED)
KEYWORDS: An extensive listing of search strategies is provided.
INCLUSION CRITERIA: Randomized controlled trials, time series, and pre-post trials; patients older than 18 years and/or their caregivers
EXCLUSION CRITERIA: Services provided in settings other than the home
PHASE OF CARE: End-of-life care
APPLICATIONS: Palliative care
Strong evidence suggests that home palliative care services increase the likelihood of patients dying at home and decrease symptom burden for patients. Evidence regarding effects for caregivers is conflicting and inconclusive. Evidence regarding cost and cost-effectiveness is insufficient to draw conclusions.
Findings provide strong evidence that home palliative care services result in increased deaths at home and reduced symptom burden for patients. The effect for informal caregivers is uncertain. Caregiver burden can be higher in situations with more patient symptoms to manage, so one could expect that reducing patient symptom burden could have some benefit for the caregiver.
Kavalieratos, D., Corbelli, J., Zhang, D., Dionne-Odom, J.N., Ernecoff, N.C., Hanmer, J., . . . Schenker, Y. (2016). Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis. JAMA, 316, 2104–2114.
STUDY PURPOSE: To complete a systematic review of palliative care interventions in randomized, controlled trials (RCTs) involving adults with life-limiting illness and meta-analysis to identify the relationship of those intervention with quality of life, symptom burden, and survival of those adults and their caregivers
TYPE OF STUDY: Systematic review of palliative care RCTs
PHASE OF CARE: Active cancer care
APPLICATIONS: Palliative care
The reviewers looked at nine domains: patient quality of life, physical symptoms, survival, patient mood, advanced care planning, site of death, resource utilization and expenditures, satisfaction with care, and caregiver outcomes resulting from patient symptom burden, survival, and quality of life. Patient quality of life was assessed in 24 studies (4,576 patients). Twelve of those studies had high risk of bias and seven were low risk of bias (five were unknown). Of the seven low-risk-of-bias studies, five reported improved quality of life. In fifteen trials, quality of care was associated with a statistically significant improvement in quality of life. High bias and heterogeneity were significant issues in the analysis. Physical symptoms were reviewed in 29 trials (10,105 people). Seventeen of 29 trials looked at physical symptoms. Of the seven that were low risk bias, after sensitivity analyses, palliative care was not associated with change in symptom burden in four trials at the 1- to 3-month follow-up because of heterogeneity. The reviewers went on to describe that, because of high risk of bias and heterogeneity, no association existed between palliative care and improved survival, patient mood, advanced care planning, site of death, and resource use.
In this review, the evidence suggests that palliative care intervention improves symptom burden and patient quality of life in those who have been diagnosed with an advanced cancer or with a serious illness. The review was not able to establish if palliative care improved caregiver quality of life. Significant issues existed with assessing the association of palliative care with quality of life, symptom burden, and adult survival because of the problematic quality and rigor of RCTs used in the systematic review and meta-analysis.
Multiple RCTs have established that palliative care improves patient experience and quality of care. Insufficient evidence exists to assess whether that is true for patient and caregiver dyads or for caregivers assessed separately from patients. More studies reflecting methodological rigor, cultural sensitivity, and quality to identify aspects of effective palliative care for both patients and caregivers remain a priority.
Dionne-Odom, J.N., Azuero, A., Lyons, K.D., Hull, J.G., Tosteson, T., Li, Z., . . . Bakitas, M.A. (2015). Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III randomized controlled trial. Journal of Clinical Oncology, 33, 1446–1452.
To assess the impact of early versus delayed (three months after patient diagnosis) initiation of palliative care for patients with advanced cancer on rural informal caregivers’ quality of life, burden (objective, demand, and stress), and depression
Caregivers were assigned to a palliative care intervention immediately following random assignment to groups (early or delayed) or three months after assignment. The telephone-based intervention, informed by authors’ earlier work sensitive to rural access issues, involved conversations between trained advanced practice palliative care nurse coaches and caregivers. Each coach provided three evidence-based content sessions delivered weekly in a scripted format. Each patient received a different coach than the family caregiver to support the open sharing of feelings about the caregiving experience. Coaches contacted their assigned caregivers on the telephone at least monthly to respond to emerging issues until patient death. Coaches encouraged caregivers to participate in patient palliative care consultations if acceptable to patient and called a caregivers when their family members died. All nurse coaches met weekly with study's primary investigator to support study integrity. To identify group differences on desired outcome measures, all caregivers completed three questionnaires at baseline and every six weeks until week 24.
Randomized, controlled trials with a wait-control design
More than 30% of participants did not complete all the follow-up assessments although the authors used appropriate statistics to confirm there was no significant relationship of attrition and measured characteristics of caregivers. The early intervention group showed a decline in depression scores from baseline compared to the delayed group (d –0.32, p = 0.02). There were no differences between the groups in quality of life or burden scores. Among the caregivers of patients who died, results for depression (p = 0.02) and stress burden (p = 0.01) were better in the early intervention group. All measures showed decline somewhat in both groups.
Study data support that well-educated, white, female caregivers experience improved quality of life, less depression, and less burden with early involvement in palliative care programs distinct from similar patient programs. More studies of minority populations, male caregivers, and low literacy populations receiving similar programs could increase the generalizability of the current study's findings.
Nursing knowledge and the clinical competency of support provision for early palliative care programs to family caregivers and patients challenged by end-of-life issues is important. The American Nurses Association Code for Nurses supports the ethical responsibility of nurses to ensure that both groups receive evidence-based programs tailored to patients and caregiver groups to meet current healthcare goals for person-centered care.
El-Jawahri, A., Greer, J.A., Pirl, W.F., Park, E.R., Jackson, V.A., Back, A.L., . . . Temel, J.S. (2017). Effects of early integrated palliative care on caregivers of patients with lung and gastrointestinal cancer: A randomized clinical trial. The Oncologist, 22, 1528–1534.
To test the effects of early integrated palliative care ([PC] plus oncology care) versus oncology care on caregivers’ distress and quality of life (QOL).
Patients in the intervention group met within the first four weeks of diagnosis with a PC-certified MD or APN and at least once monthly until the patient died; PC providers had the ability to contact patients in the intervention group by phone if an in-person visit was not possible, they also added more visits as needed. The PC visits focused on interventions with patients that were discussed in a different study that was referred to. Caregivers were not required to attend the PC visits but were encouraged to. Seventy-one percent of PC visits were attended by caregivers.
Randomized nonblinded clinical trial. Randomization using 1:1 stratified by cancer type. Researchers/clinicians learned of assignment after it was done by the Office of Data Quality staff.
Caregiver mood and anxiety were assessed using the Hospital Anxiety and Depression Scale (HADS); the QOL was assessed using SF-36. Measurement of outcomes occurred at week 12 and week 24 post-enrollment.
At 12 weeks, caregivers in the intervention group has significantly lower total psychological distress (anxiety and mood) assessed by HADS total scale score (adjusted mean difference = -1.45, 95 CI [-2.76, -0.15], p = 0.029; the difference seems to be driven by the lower depression scores on the subscale level (adjusted mean difference = -0.71, 95% CI [-1.38, -0.05], p = 0.036). At 24 months, no significant differences between the two groups for any of the outcomes (total psychological distress, depression, anxiety, and QOL). Using terminal decline model (which factors in missing data and deterioration in caregivers outcomes closer to death), caregivers in the interventions group has significantly lower HADs-total (and lower scores on the subscales, depression and anxiety) (95% CI [4.11, 9.58]). No differences in QOL still under this model between the two groups of caregivers.
Early Integrated PC to patients with incurable cancer decreases their caregivers' psychological distress (anxiety and depression) but not QOL.
This was a compelling study for early palliative care--educating patients and their caregivers about benefits of early PC and addressing that the benefits extend beyond patients.
McDonald, J., Swami, N., Hannon, B., Lo, C., Pope, A., Oza, A., . . . Zimmermann, C. (2016). Impact of early palliative care on caregivers of patients with advanced cancer: Cluster randomised trial. Annals of Oncology, 28, 163–168.
To report the effect of an early palliative care intervention on quality of life (QOL) and satisfaction with care of caregivers of patients with advanced cancer
A cluster randomization process involving patients and their caregivers in 24 Canadian medical oncology clinics supported two randomized arms: an intervention with early palliative care team referral or usual oncology care with palliative care only as needed. Further stratification of clinics by tumor site supported the two study arms. Both arms included caregivers of patients with advanced cancer, defined as having a clinical prognosis of 6–24 months and an ECOG score of 0–2, who completed previously validated instruments on care satisfaction (FAMCARE-19) and QOL (SF-36v2 Health Survey, Caregiver Quality of Life Index-Cancer [CQOL-C]). A mixed effect model evaluated intervention group improvement over the control group at baseline assessment and monthly for as many as four months.
Cluster randomized trial design
Canadian caregivers of patients with advanced cancer that receive early palliative care team intervention experience increased satisfaction with care compared to those who receive standard oncology care. Additional work to explore the impact of an early palliative care team intervention on caregiver QOL with an attention on factors like sample size and contextual factors of care will contribute to the science in this area.
Few clinical trials assess the effect of early palliative care interventions on caregivers of patients with advanced cancer. Current standards of care for patients with advanced cancer include integrating palliative care to improve patient care satisfaction and QOL. This study shows evidence that including those patient caregivers in such an approach improves their satisfaction with care, although it is unclear whether it improves their overall QOL.
O'Hara, R.E., Hull, J.G., Lyons, K.D., Bakitas, M., Hegel, M.T., Li, Z., & Ahles, T.A. (2010). Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliative and Supportive Care, 8, 395–404.
To assess whether a previously supported patient-directed palliative care intervention would decrease caregiver burden
Patients received a random assignment to either an intervention (palliative care) or usual care group. Intervention patients participated in four weekly telephone sessions focused on communicating with healthcare providers, learning problem-solving skills, managing disease symptoms, and planning for end-of-life care. Patient caregivers received invitations and volunteered to participate in the intervention. Following the intervention, nurses called patients at least once a month to lend support and present additional information. Patients in the usual care group received standard oncology care at the cancer care center. Caregivers and patients completed questionnaires at baseline, one month post-baseline, and every three months until the end of the study. Following patient death during the study period, caregivers were asked to complete the After-Death Bereaved Family Member Interview (ADI).
Randomized, controlled trial
Patient FACIT-Pal scores correlated negatively and at high levels with ESAS scores and CES-D scores, and ESAS and CES-D scores correlated positively. Fewer and less consistent correlation of caregiver burden scores occurred: caregivers perceiving objective burden sources reported stress but not demand burden (unreasonable patient requests for care). Demand burden was positively correlated with stress burden in caregivers. Patients who identified lower patient quality of life (FACIT-Pal) had caregivers scoring higher on objective and stress burden. Caregivers scored higher on objective burden and stress burden if patients had higher ESAS and CES-D scores (latter evident one month postbaseline). Of 96 caregiver burden correlations, patient well-being, and quality of care, five achieved statistical significance. These included patient spiritual and emotional support concerns associated with patient well-being (p < 0.01) and decreased caregiver stress burden (p < 0.01) at baseline. One month postbaseline, unmet patient needs correlated with caregiver stress burden (p < 0.05), and concerns with patient respectful treatment correlated with increased caregiver demand burden (p < 0.05).
Despite evidence in a previous ENABLE II study supporting the success of a palliative care interventions to decrease patient symptom intensity, depression, and improve quality of life, this study did not support improvement in caregiver burden with a similar methodology.
Multiple studies document that minimizing caregiver burden requires specialized interventions focusing on emotional, financial, spiritual, and physical strains but also caregiving benefits gained in a dyadic relationship (patient and caregiver). Well-designed long-term randomized, controlled trials sensitive to documented health interaction outcomes of caregiving dyads may provide clinical direction for improved patient well-being and lower caregiver burden during palliative cancer care.
Sun, V., Grant, M., Koczywas, M., Freeman, B., Zachariah, F., Fujinami, R., . . . Del Ferraro, C. (2015). Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer. Cancer, 121, 3737–3745.
To test the effectiveness of an overall supportive and psychoeducational care intervention on caregiver quality of life and patient symptoms
A quality of life assessment was conducted at baseline for patients and caregivers. Results were used to develop a palliative care plan that was discussed at weekly meetings by the interdisciplinary care team. Symptom management and supportive care referrals and community resources were identified as needed. Family caregivers also received four educational sessions and a manual of all teaching content. Questionnaires were completed at baseline, 6, and 12 weeks. A comparison usual care group was recruited after the intervention group and had study measures obtained at baseline and at 7 and 12 weeks.
PHASE OF CARE: Late effects and survivorship
Prospective, nonrandomized, parallel-group trial
Caregivers in the experimental group had improved quality of life in the social well-being domain (p < 0.001) and distress (p = 0.01). Caregivers in the intervention group reported less problem with objective burden or life disruption (p < 0.001).
The palliative care intervention provided here was associated with lower caregiver strain and burden in some aspects compared to those who did not receive the intervention.
The findings were limited because of study design; however, the findings support the benefit of palliative care for caregivers.