Main Points

For integrating palliative care into ambulatory care for adults with serious life-threatening chronic illness and conditions other than cancer in U.S. settings:

• A variety of resources exist, particularly for patient and caregiver education and clinician education and training, but few have been evaluated for effectiveness or implementation.
• Shared decision-making tools may increase patient satisfaction and advance directive documentation.
• The models evaluated for integrating palliative care may have little to no effect on reducing overall symptom burden and were not more effective than usual care for improving health-related quality of life or depressive symptom scores but were more effective for increasing advance directive documentation.
• Patients and caregivers prefer advance care planning discussions grounded in patient and caregiver experiences and individualized for timing.

Background and Purpose

In the United States, most care for adults with serious life-threatening chronic illness or conditions (e.g., advanced heart failure, chronic obstructive pulmonary disease, or end-stage renal disease) occurs in ambulatory settings. Care for these patients can be complex, as the patients often experience high symptom burden and decreased health-related quality of life. Patients may benefit from the integration of palliative care into ambulatory care that is made possible either through the incorporation of palliative care services or by training ambulatory care clinicians in palliative care.

The key decisional dilemma for clinicians, patients, and caregivers is “How can people with serious life-threatening chronic illness or conditions best receive ambulatory care that integrates appropriate palliative care approaches or educational services, materials, or shared decision-making tools?” An existing recent systematic review addresses integrating palliative care into ambulatory oncology, so this review focuses on other serious chronic illness and conditions.

Methods

We completed a mixed-methods review focusing on serious chronic illnesses other than cancer; we synthesized and integrated evidence from key U.S. national websites (March 2020), quantitative effectiveness and qualitative implementation studies, and input from patient/caregiver and clinician/stakeholder Key Informants. We completed searches for studies in May 2020. With input from the stakeholders and experts, we considered effectiveness as those outcomes that are within the domains of palliative care and have evidence for associations with positive patient and caregiver outcomes. We performed meta-analyses when appropriate.

Results

For each of the Key Questions below, we addressed three parts:

• What is available?
• What is the effectiveness?
• How is it implemented?

We then integrated these parts for each Key Question.

We included 46 Web resources, 20 quantitative effectiveness studies and 16 qualitative implementation studies. We identified no mixed-methods studies.

Strengths and Limitations

The studies evaluating the effectiveness and implementation of shared decision-making tools focused only on aspects of advance care planning, and included a wide variety of shared tools and models for integrating palliative care across primary care and specialty settings. Studies addressed primary care and common serious illnesses, but none addressed the important ambulatory palliative care issues of multimorbidity or frailty or issues of health equity. Although Web resources exist for identification of patients, patient and caregiver educational materials, and clinician education and training, little evidence for effectiveness or implementation exists for these types of interventions. Key study limitations included issues with blinding of outcomes assessment and variations in outcome reporting (particularly for cost and resource use) in quantitative studies and lack of sufficient rigor in qualitative studies. No studies reported burdens or adverse effects of interventions. Although implementation evidence describes key components and characteristics of models for integrating palliative care and factors in shared decision-making tool and model implementation, evidence for patient/caregiver perspectives on factors in model implementation was limited and we were unable to draw conclusions on the effectiveness of specific components and characteristics, or in specific populations or settings.

Implications and Conclusions

For integrating palliative care into ambulatory care, shared decision-making tools may increase patient satisfaction and advance directive documentation. Models for integrating palliative care may have little to no effect on overall symptom burden and were not effective for patient health-related quality of life or depressive symptom scores, but did increase advance directive documentation. Given the investments needed for these types of interventions with little to no effectiveness for patient-centered outcomes, more research is particularly needed on the effectiveness on patient outcomes of identification of patients for palliative care; educational materials for patients, caregivers, and clinician; and specific types, components, and characteristics of models for integrating palliative care.