What Are the Arguments That Show That Outpatient Palliative Care Is Beneficial to Medical Systems?

The Definition of Outpatient Palliative Care

Outpatient palliative care can be defined as palliative care services provided to patients in ambulatory settings, including ambulatory practices and clinics. In such settings, patients often receive palliative care concurrently with care intended to effect cure or control of their disease. While the specific issues addressed in a given outpatient palliative care visit may vary widely, the common topics addressed often include symptom management, support for family caregivers, and advance care planning, including discussions of prognosis, treatment options, and medical decision making. Most consider hospice care separately when discussing the financial impacts of outpatient palliative care.

The Call for Outpatient Palliative Care

Although many patients spend some time in the hospital near the end of their life, the majority spend most of their life as outpatients. Hospital stays are typically short, and even patients with frequent hospital admissions spend most of their final years at home or in other community settings where they receive outpatient medical care. Therefore for patients with a serious illness to consistently receive palliative care across their illness trajectory, palliative care must be available outside the hospital and, for patients with a poor prognosis especially, early in the course of illness.

The symptom burden among outpatients with serious illness is profound. Most studies of outpatient palliative care to date have focused on people with cancer and have shown that these patients suffer from numerous and distressing symptoms. Oncologists found that more than half of cancer patients need assistance with pain (81%), depression (69%), and fatigue (56%). Uncontrolled symptoms result in increased health care usage, and even symptoms that are rated mild in severity can create significant distress.

More recent studies have revealed significant symptom burden among outpatients with noncancer diagnoses. Patients with serious illness and their families benefit from palliative care, including patients with advanced heart disease (including congestive heart failure [CHF] and coronary artery disease), advanced lung disease (including chronic obstructive pulmonary disease [COPD], interstitial lung disease, and pulmonary hypertension), neurological disease (including stroke and progressive diseases such as Alzheimer disease, Parkinson’s disease, and amyotrophic lateral sclerosis), end-stage renal failure, and end-stage liver disease (including cirrhosis from alcohol and chronic hepatitis). While specific symptoms and advance care planning needs of disease-specific patient populations may differ from those of cancer patients, their overall palliative needs are significant. A 2009 study found symptom burden, depression, and spiritual distress among patients with symptomatic heart failure to be comparable to patients with cancer. Fredheim and colleagues demonstrated that chronic nonmalignant pain can significantly impair quality of life. Studies have demonstrated significant symptom burden and unmet palliative care needs among patients with human immunodeficiency virus, advanced lung diseases, CHF, dementia and other degenerative neurological diseases, end-stage renal disease, end-stage liver disease, and others.

In the setting of such significant symptom burden among outpatients, major medical organizations, including the Institute of Medicine, have called for the provision of palliative care across sites of care, including in the outpatient setting, that is delivered concurrently with ongoing curative and disease-directed treatments. The American Society of Clinical Oncology (ASCO) has called for concurrent oncological and palliative care in multiple settings, including outpatient clinics, acute and long-term care facilities, and private homes. ASCO has also recommended that all patients with metastatic cancer and/or high symptom burden be offered palliative care at the time of diagnosis. Additionally, some professional organizations focused on a wide spectrum of serious illness, including the World Health Organization, the American Academy of Neurology, the National Comprehensive Cancer Network, the American College of Cardiology, and the American College of Chest Physicians, have called for attention to palliative care among their members. The National Quality Forum emphasizes the needs for continuity of care among health care settings, for seamless follow-up, and for advance care planning in the community.

The Growth of Outpatient Palliative Care

Outpatient palliative care is a rapidly developing field (see also Chapter 69 ). Within cancer centers, Hui and colleagues reported in 2020 that palliative care services increased in availability from 59% in 2009 to 95% in 2018 in National Cancer Institute (NCI) cancer centers. However, a significant increase in availability was not observed among non–NCI-designated cancer centers during the same time period (22% to 40%), demonstrating the persistent variation in access to outpatient palliative care. The vast majority of patients referred to outpatient palliative care practices in the United States have cancer and were referred by an oncologist. However, there is evidence of shortages of workforce and clinical capacity to accommodate the ASCO recommendation that all advanced cancer patients receive palliative care, and an international study of oncology palliative care providers suggested that financial constraints may limit expansion of palliative care services.