Introduction

Background

Most care for adults with serious life-threatening chronic illness or conditions occurs in ambulatory settings, particularly in clinicians’ offices. Care for these patients can be complex, because patients often experience high symptom burden and other needs and decreased health-related quality of life. Patients may benefit from integration of palliative care into ambulatory care, either through the incorporation of palliative care services or by training ambulatory care clinicians in palliative care competencies. Palliative care can be defined as “care, services, or programs for patients with serious life-threatening illness and their caregivers, with the primary intent of relieving suffering and improving health-related quality of life, including dimensions of physical, psychological/ emotional, social, and spiritual well-being.”¹ Palliative care interventions aim to address outcomes such as patient symptoms; advance care planning and goals of care communication; patient and caregiver satisfaction; and potentially burdensome healthcare utilization, such as hospitalizations.

Populations with serious life-threatening chronic illness and conditions of key interest for palliative care include, but are not limited to, those with advanced heart failure [New York Heart Association (NYHA) class III or IV], advanced chronic obstructive pulmonary disease [Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage III or IV], end-stage renal disease (older patients on dialysis or choosing not to have dialysis), and those with frailty or multiple serious chronic conditions.² Cancer is also a key area of interest for integrating palliative care but, because an existing recent systematic review already addresses integrating palliative care into ambulatory oncology, this review focuses on other illnesses and conditions.³

The key decisional dilemma for health systems, clinicians, patients, and family caregivers (noted hereafter as “caregivers”) is the following: “How can people with serious life-threatening chronic illness or conditions best receive ambulatory care that integrates appropriate palliative care approaches?” Given the significant investments and competing needs for health systems and clinicians in palliative care along with the costs and burdens for patients and caregivers, the evaluation of patient- and caregiver-centered outcomes, utilization, costs, and burden is important. A variety of types of interventions can be implemented, separately or together, to better integrate palliative care into ambulatory care for this population.

Interventions

Identification of patients. Approaches to identifying ambulatory patients who could benefit from palliative care include triggers or prediction models or tools.⁴ These approaches may incorporate patient or illness characteristics; recent hospitalizations; indicators of serious illness or worsening of illness, such as worsening functional status; or patient-reported measures to identify patients who may have needs that could be addressed with palliative care approaches.

Patient and caregiver educational materials and resources. Educational materials about integrating palliative care and palliative care options in ambulatory care such as pamphlets, Web sources, and videos are available from a variety of organizations focusing on palliative care as well as specific conditions. Some evidence supports the effectiveness of patient education for increasing patient acceptance of palliative care.⁵

Shared decision-making tools. Shared decision-making tools are patient-facing and/or clinician-facing tools to help people make decisions for domains such as advance care planning or symptom management for relevant populations in ambulatory care.⁶ Advance care planning, or communication about serious illness care goals, is defined by the American College of Physicians as a key task in ambulatory care that should occur throughout the course of a serious illness.² Relevant tools may include advance care planning guides, such as advance directive forms, patient and clinician educational materials, and Web- and video-based interventions focused on serious illness and conditions.

Clinician education. National palliative care organizations and other types of organizations have developed trainings and education materials that include content about integrating palliative care into ambulatory care to educate both palliative care and nonpalliative care clinicians.

Models for integrating palliative care into ambulatory care and multimodal interventions. Successful models for integrating palliative care approaches with primary and other ambulatory care address 1) the complexity of care and needs in cases of serious illness and 2) coordination with broader health systems.⁷ Key models for integrating palliative care include shared care (where palliative care clinicians work together with other ambulatory clinicians to meet patients’ palliative care needs), consultative care (where nonpalliative care ambulatory clinicians address common palliative care needs, with referrals to specialty palliative care when needs are more complex or are not being met), and the use of supplementary care coordinators or social workers in care. Multimodal interventions, for the purposes of this review, are defined as combinations of the different types of included specific interventions: identification of patients, education for patients and caregivers, shared decision-making tools, and education for nonpalliative care clinicians.

Purpose of the Review

We addressed five questions about the integration of palliative care in ambulatory care for patients with serious life-threatening chronic illness or conditions other than cancer:

1. How can we identify those patients who could benefit from palliative care in ambulatory care settings?
2. What educational resources are available for patients and caregivers in ambulatory care about palliative care?
3. What palliative care decision-making tools are available for clinicians, patients, and caregivers in ambulatory care?
4. What educational resources are available for nonpalliative care clinicians about palliative care in ambulatory settings?
5. What are the models for integrating palliative care into ambulatory settings?

For each of these questions we addressed three parts:

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