Moving Upstream: A Review of the Evidence of the Impact of Outpatient Palliative Care

Abstract

Background:

There is good evidence for the efficacy of inpatient palliative care in improving clinical care, patient and provider satisfaction, quality of life, and health care utilization. However, the evidence for the efficacy of nonhospice outpatient palliative care is less well known and has not been comprehensively reviewed.

Objective:

To review and assess the evidence of the impact of outpatient palliative care.

Methods:

Our study was a review of published, peer-reviewed outcomes research, including both observational studies and controlled trials of nonhospice outpatient palliative care services. We assessed patient, family caregiver, and clinician satisfaction; clinical outcomes including symptom management, quality of life, and mortality; and heath care utilization outcomes including readmission rates, hospice use, and cost.

Results:

Four well-designed randomized interventions as well as a growing body of nonrandomized studies indicate that outpatient palliative care services can: 1) improve patient satisfaction, 2) improve symptom control and quality of life, 3) reduce health care utilization, and 4) lengthen survival in a population of lung cancer patients.

Conclusions:

The available evidence supports the ongoing expansion of innovative outpatient palliative care service models throughout the care continuum to all patients with serious illness.

Introduction

Palliative care programs have become widespread since 2000, mostly operationalized as hospital consultation services and inpatient units. With the growth of hospital services has come an increasing acceptance that palliative care is a care delivery model appropriate for all people with serious illness. Palliative care is now often defined as “an extra layer of support…appropriate at any age and at any stage in a serious illness…provided together with curative treatment.”¹ This acceptance has been accompanied by a rapid growth of nonhospice, palliative care services in the outpatient sector.² With 85% of large U.S. hospitals already offering inpatient palliative care services,³ “outpatient palliative care” is emerging as the key next step in service development. Nonhospice outpatient palliative care can be defined as including specialty consultations and co-management in clinics, homes, or residential living facilities.⁴

Major professional medical organizations, including the Institute of Medicine, the World Health Organization, the National Quality Forum, the American Society of Clinical Oncology (ASCO), the Commission on Cancer, the National Comprehensive Cancer Network, the American College of Cardiology/American Heart Association (ACC/AHA), and the American College of Chest Physicians, now call for improved palliative care services across the spectrum of care settings and diseases.^5–12 Increasingly, recommendations are to integrate palliative care services into the routine care of patients with serious illness from the onset of a serious or life-limiting disease. This vision of integrated disease and palliative care co-management is most clearly expressed in ASCO's provisional clinical opinion: “combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”^8,13

There is good evidence for the efficacy of inpatient palliative care in improving clinical care, patient and provider satisfaction, quality of life, and health care utilization.^14–23 Similarly, data support the quality of hospice care.^24–26 Although many of the documented palliative care benefits likely extend to the outpatient setting, the evidence for the efficacy of outpatient palliative care is less well known and has not been comprehensively reviewed. This report reviews the published data demonstrating the impact of nonhospice outpatient palliative care interventions. Such data can be used in defining areas of need for future research as well as in support of ongoing expansions nationally into outpatient palliative care.

Methods

A review of the literature was undertaken, guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations (www.prisma-statement.org). The search strategy used the Medline and the Cumulative Index to Nursing & Allied Health (CINAHL) databases. Using Medical Subject Heading (MESH) terms and free text, keyword groups including “palliative care,” “outpatient,” “home-based,” “community-based,” “clinic,” “supportive-care,” and “symptom management” were combined in several ways. Inclusion criteria were: 1) primary studies reported in English, 2) studies using a randomized controlled trial design, and 3) studies reporting on impact of outpatient palliative care on quality of care, cost of care, and patient/caregiver experience including quality of life and symptom burden. This search strategy yielded an insufficient number of manuscripts to move to a meta-analysis of data, thus the decision was made to present the existing evidence with a focus on a few sentinel articles. Data search was supplemented by a hand search of review articles, a search of grey literature, and personal contact with researchers who had published in outpatient palliative care to ensure that we had identified relevant sentinel articles.

Proposed benefits of outpatient palliative care

The calls for greater outpatient palliative care services make sense in light of the numerous theoretical benefits of moving palliative care “upstream” and into the community. Arguments for outpatient palliative care are made on epidemiological, clinical, and health care utilization bases. Benefits are identified for patients and families primarily, and for clinicians and the health care system at large secondarily.

Benefits to patients and families

Although acute hospitalizations generate dramatic care needs, patients receive most of their care as outpatients. Based on data from the inpatient setting, it is presumed that outpatient palliative care can improve symptoms, satisfaction with care, and reduce unwanted health care utilization that does not match patient-defined goals.^14–23 Outpatient palliative care services may also offer patients and families the benefit of better quality of life for a longer period of time in that they increase the potential for symptom improvement with the added benefits that come from allowing palliative care interventions the time necessary to have their greatest effect, a common problem noted with late-referrals for hospice or inpatient palliative care services. Finally, there is a great potential for improved coordination of care, as care preferences are clarified earlier along with greater care continuity for patients across care settings.

Benefits to clinicians

Current models of outpatient palliative care services that are integrated with oncology and other outpatient clinics indicate that the services are well accepted and provide support not only to the patient/family, but also to the referring clinician in terms of support for difficult decisions, assistance with challenging symptom management problems, and conflicts around goals of care.²⁷

Benefits to the health care system

As noted above, a central role of palliative care services is to match patient goals with appropriate use of medical interventions. Through the potential to get “the right care to the right patients at the right time,” efficiency in the health care system is improved.^20–21 Outpatient palliative care promises to help avert unnecessary and unwanted hospitalizations, readmissions, emergency room and intensive care unit visits, and to increase earlier hospice engagement. Such improved disease management can meet the needs of integrated health care systems and accountable care organizations to provide high-quality care and to avoid ineffective or unwanted care. In fact, there now appears to be a historic alignment of the clinical benefits of palliative care and the financial benefits of providing such care.²⁸

Seminal outpatient research reports

The theoretical benefits outlined above are supported by expert consensus, extrapolation from the impact of inpatient palliative services, and a limited number of outpatient palliative care research studies. Although a number of important studies exist, the published literature does not yet include standard or comparable definitions of services, clinical structures, or clinical outcomes, making a formal meta-analysis or systematic review unfeasible. However, a descriptive summary of key studies appropriately describes the nascent research in outpatient palliative care. Four research trials of outpatient palliative care service have been selected for in-depth description below as they utilize a prospective, randomized, usual care control group methodology and are frequently cited as representing the strongest evidence of the benefits of outpatient palliative care (Table 1).

Table 1.

Seminal Research Studies Documenting the Benefits of Outpatient, Nonhospice Palliative Care

Study authors	Year published	Palliative care service or intervention	Patient population	Study design	Outcomes
Patient, family, and clinician satisfaction
Brumley, et al.^29,30	2003, 2007	In-home palliative care	Late-stage COPD, CHF, and cancer	Prospective, randomized controlled trial	• Improved patient satisfaction at 30 days (OR=3.37, p=0.006) and at 90 days (OR=3.37, p=0.03)
Rabow, et al.^31.32	2003, 2004	Palliative care consultation in a primary care clinic	Late-stage COPD, CHF, and cancer	Prospective, cluster randomized controlled trial	• Increased satisfaction with family, primary care physicians, and the medical center generally • No change in satisfaction with care
Improved symptom management and quality of life
Rabow, et al.^31,32	2003, 2004	Palliative care consultation in a primary care clinic	Late-stage COPD, CHF, and cancer	Prospective, cluster randomized controlled trial	• Improved dyspnea (p=0.01) and anxiety (p=0.05), improved spiritual well-being (p=.007), and sleep quality (p=0.05) • No difference in pain, depression, or quality of life
Bakitas, et al.³³	2009	Telephonic, advance practice nurse-led psychoeducational intervention	Advanced cancer	Prospective, randomized controlled trial	• Improved quality of life (p=0.02) and depression (p=0.02)
Temel, et al.^34–36	2010, 2012	Early palliative care co-management	Metastatic non-small cell lung cancer	Prospective, randomized controlled trial	• Improved quality of life and well-being (p=0.04) • Less depressive symptoms (p=0.03)
Mortality
Brumley, et al.^29,30	2003, 2007	In-home palliative care	Late-stage COPD, CHF, and cancer	Prospective, randomized controlled trial	• No significant differences in survival time (log rank test=2.98; p=0.08)
Temel, et al.^34–36	2010, 2012	Early palliative care co-management	Metastatic non-small cell lung cancer	Prospective, randomized controlled trial	• Longer survival (median survival 11.6 versus 8.9 months; p=0.02).
Impact on health care utilization and readmissions
Brumley, et al.^29,30	2003, 2007	In-home palliative care	Late-stage COPD, CHF, and cancer	Prospective, randomized controlled trial	• Fewer visits to the emergency department (p=0.01) • Fewer hospitalizations (p=0.001)
Rabow, et al.^31,32	2003, 2004	Palliative care consultation in a primary care clinic	Late-stage COPD, CHF, and cancer	Prospective, cluster randomized controlled trial	• Fewer primary care visits (p=0.03) and urgent care visits (p=0.04) • No differences in emergency room visits, hospitalizations, subspecialty visits
Bakitas, et al.³³	2009	Telephonic, advance practice nurse-led psycho-educational intervention	Advanced cancer	Prospective, randomized controlled trial	• No differences in resource utilization
Temel, et al.^34–36	2010, 2012	Early palliative care co-management	Metastatic non-small cell lung cancer	Prospective, randomized controlled trial	• Less chemotherapy in the last 2 weeks of life • Fewer short hospice stays • Greater hospice utilization
Reduced cost
Brumley, et al.^29,30	2003, 2007	In-home palliative care	Late-stage COPD, CHF, and cancer	Prospective, randomized controlled trial	• 45% decrease in total care costs
Rabow, et al.^31,32	2003, 2004	Palliative care consultation in a primary care clinic	Late-stage COPD, CHF, and cancer	Prospective, cluster randomized controlled trial	• No differences in cost
Temel, et al.^34–36	2010, 2012	Early palliative care co-management	Metastatic non-small cell lung cancer	Prospective, randomized controlled trial	• Saved $2,282 per patient overall

Studies may be listed in multiple categories of benefit.

CHF, congestive heart failure; COPD, chronic obstructive pulmonary disease; OR, odds ratio.

Kaiser Permanente in-home palliative care

Brumley and colleagues at the Kaiser Permanente health system sought to evaluate whether in-home palliative care for terminally ill patients had an impact on patient satisfaction, place of death, and cost of care.^29,30 In this trial, 297 patients with late-stage congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer were recruited and randomly assigned to receive in-home palliative care services or usual care. Part of a community-based, integrated health system, the in-home palliative care intervention provided an interdisciplinary team approach similar to hospice but without limitations with regard to life expectancy or limitations on the pursuit of curative care. The team placed an emphasis on comfort-focused care and care coordination, and was directed by a palliative care physician. Members of the palliative care team, including physicians, conducted home visits and were available on-call. The intervention provided education and training including self-management skills to family caregivers.

Patient satisfaction improved in the intervention group at both 30 days (odds ratio [OR] 3.37; p=0.006) and at 90 days (OR=3.37; p=0.03). There was a decrease in health care utilization with fewer visits to the emergency department (p=0.01) and fewer hospitalizations in the intervention group (p=0.001), with no significant differences in survival time (log rank test=2.98; p=0.08). Although home care visits and costs were increased, these costs were outweighed by savings from fewer physician office visits, emergency department visits, hospital days, and skilled nursing facility days, resulting in an overall 45% decrease in total care costs.

The Comprehensive Care Team

In the Comprehensive Care Team (CCT) project, Rabow and others assigned 90 patients with advanced CHF, COPD, or cancer referred from two primary care practices to receive an interdisciplinary palliative care intervention or usual primary care.^31,32 Life expectancy for eligible patients in this study was estimated between 1 and 5 years. In the intervention group, patients received integrated palliative care team consultation, including caregiver training, advance care planning, and psychosocial support.

The palliative care team did not initiate any medical treatments, relying on the primary care physicians (PCPs) to implement suggested plans if they so desired. In fact, PCPs rarely implemented the team's pharmacologic recommendations. Nevertheless, the palliative care intervention group had lower symptom burden for dyspnea (p=0.01) and anxiety (p=0.05), improved spiritual well-being (p=0.007), and sleep quality (p=0.05). There was no difference in depression, pain, quality of life, or satisfaction with care. Intervention arm participants had fewer primary care visits (p=0.03) and urgent care visits (p=0.04). There were no differences in emergency room visits, hospitalizations, subspecialty visits, or cost. As a result of the palliative care intervention, patients reported increased satisfaction with family, PCPs, and the medical center generally.

Project ENABLE

Bakitas et al. conducted the ENABLE (Educate, Nurture, Advise, Before Life Ends) study between 2003 and 2008 in a rural New England National Cancer Institute-designated cancer center.³³ Three hundred and twenty-two patients with advanced cancer were randomized to receive a multicomponent, psychoeducational intervention delivered by advanced practice nurses (APNs) consisting of four weekly educational sessions and monthly follow-up sessions until death (or study completion) or usual care. The intervention utilized a telephone-based format to improve access to palliative care in rural regions, and used a case management, educational strategy to enhance patient activation, self-management, and empowerment. Palliative care interventions included assessment using the National Comprehensive Cancer Network Distress Thermometer, symptom management recommendations, social support resources, and advance care planning. The study did not include evaluation by the specialist palliative care team unless requested by the intervention APN.

The primary outcomes of the intervention were impact on quality of life (Functional Assessment of Chronic Illness Therapy–Palliative Care [FACIT-Pal]), symptom burden (Edmonton Symptom Assessment System [ESAS]), and resource use. Longitudinal analysis demonstrated positive impact on quality of life in the intervention group (p=0.02), lower depressive symptom burden on the Center for Epidemiologic Studies Depression Scale (CES-D) (p=0.02), and a trend toward lower symptom burden (p=0.06); there was no statistically significant differences on resource utilization.

The Temel study

Temel and researchers at Harvard University randomized 151 participants with metastatic non-small cell lung cancer to receive either early palliative care concurrent with oncologic care, or usual oncologic care.^34–36 Participants in the intervention arm received monthly, standardized palliative care clinic visits that focused on symptom management, identification of goals of care, assistance with decision making, and care coordination. Outcomes were measured at baseline and at 12 weeks. The primary outcome was change in quality of life (Functional Assessment of Cancer Therapy–Lung [FACT-L]) along with symptom burden (the Hospital Anxiety and Depression Scale [HADS]), the Patient Health Questionnaire 9 (PHQ-9), and measures of health care utilization. At 12 weeks, participants assigned to the intervention group had significantly higher quality of life scores on the FACT-L, the Lung Cancer Subscale (LCS), and the Trial Outcome Index (TOI), which is the sum of the scores on the LCS and the physical well-being and functional well-being subscales of the FACT-L scale.

Participants in the intervention arm had fewer depressive symptoms (p=0.03) and an increase in the TOI at 12 weeks (+2.3) as compared with a decrease in the usual care group (–2.3) (p=0.04). Among the 105 participants who died in the course of the study, participants in the intervention group were less likely to receive aggressive care at the end of life (chemotherapy within 2 weeks before death) or hospice admission within 3 days of dying, and were more likely to receive hospice care. Hospice costs increased, but these were more than outweighed by the cost savings associated with decreased chemotherapy and hospitalization in the last weeks of life. Estimates are that the early outpatient palliative care intervention saved $2,282 per patient overall. Participants in the intervention group had significantly longer survival than those in the usual care group (median survival 11.6 months versus 8.9 months; p=0.02).

Summary

Results from these four well-designed, prospective, controlled studies indicate that outpatient palliative care services can: 1) improve patient satisfaction, 2) improve symptom control and quality of life, 3) reduce health care utilization, and 4) lengthen survival in a population of lung cancer patients. It should be noted that not all these studies confirmed all these results, which is likely due to differences in study design, patient population, and primary outcomes.

Other key and emerging research studies

The four studies reported above are not the only research results documenting outpatient palliative care benefits. Listed below is a summary of other key research findings suggesting positive impacts from outpatient palliative.

Patient, family, and clinician satisfaction

Supporting the findings in the studies above by Rabow and Brumley, multiple other studies in the United States and elsewhere have shown high satisfaction with outpatient palliative care services for patients in cancer centers, using validated survey instruments.^37–40 In a systematic review by Zimmermann et al. of randomized controlled trials of a variety of different palliative interventions, four outpatient programs measured satisfaction, with three demonstrating statistically significant improved patient satisfaction in the intervention groups.¹⁹

Family caregivers report satisfaction, decreased caregiver burden, and fewer unmet needs when loved ones receive outpatient palliative care services. Family members of cancer patients receiving outpatient palliative care in a cancer center reported improved satisfaction one month after palliative care team consultation.³⁸ The Zimmermann review above showing improved patient satisfaction also documented improved family caregiver satisfaction in three of four outpatient controlled trials in various settings, including a nursing home, a home-based, and a coordinated inpatient/outpatient program.^19,41 A pediatric palliative care clinic demonstrated high satisfaction among the parents of patients.⁴² Specialized palliative care services across a variety of settings, including outpatient services, were associated with caregivers reporting fewer unmet needs.⁴³ A randomized controlled study of outpatient palliative care for patients with multiple sclerosis showed decreased caregiver burden in the intervention group.⁴⁴

Outpatient palliative care is also associated with improved satisfaction or other benefits among clinicians, including referring oncologists and the palliative care providers themselves.^27,45 Notably, outpatient palliative care may save referring clinicians time. In the study by Muir and colleagues of palliative care consultants embedded in oncology offices, estimates were that tasks performed by the palliative care consultants saved oncologists 170 minutes per referral over the course of the patient-oncologist relationship, or just over 4 weeks per year per participating practice (assuming the oncologists would have performed these duties themselves in the absence of the consultants).²⁷ Although palliative care teams can provide some of the care otherwise required of referring clinicians, there is also evidence that palliative care provides services in addition to and complementary with the focus of the referring physicians.⁴⁶

Improved symptom management and quality of life

Observational studies of symptom severity before and after outpatient palliative care consultation consistently demonstrate improvement associated with palliative care at both short (1 week), medium (1 month), and longer-term (12 weeks) follow-up. Improvements have been demonstrated in pain, depression, anxiety, dyspnea, sleep, quality of life, and well-being.^{37,38,47–50} Symptom and quality-of-life improvements have primarily been assessed in patients with cancer, however, improvements have also been seen in outpatient palliative care for chronic illnesses including advanced cardiovascular, pulmonary, immunologic/infectious, and neurologic illness.^44,51–53 Improvements have been documented with outpatient palliative care in the Veterans Administration and in rural settings.^54,55

Mortality

In addition to the Temel study noted above,³⁴ a palliative care APRN pilot study using a comparative pre/post-design reported on patient mortality.⁵⁶ This trial compared 49 patients with advanced cancer (stage III or IV) in a single community oncology setting with 52 who also received APRN assistance with pain and symptom control, education on medication adverse effects, psychosocial-spiritual support, and discussions on end-of-life preparation. The APRN was integrated into the oncology practice and had access to a palliative care consultation team. The intervention was associated with a significant decrease in the adjusted odds of being hospitalized (OR=0.16; p<0.01) and a significantly improved mortality rate (OR of being alive at 4 months=24.64; p=0.02).

Impact on health care utilization and readmissions

A central goal of palliative care is to better align patients' health care with their care preferences. As in the Brumley, Rabow, and Temel trials described above, numerous research studies now support the finding that outpatient palliative care is associated with changes in the use of health care resources, including decreased aggressive treatments at the end of life; decreased ambulatory, emergency, and hospital utilization; and increased hospice use.

Ambulatory care utilization decreased in the Sutter Advance Illness Management (AIM) intervention.^57,58 The AIM project, highlighted by the Agency for Healthcare Research and Quality, is a systems-based model that provides assistance with care transitions from acute to end-of-life care, supports clarification of health care goals, and assists with home care and symptom management to address gaps in care for patients with late-stage chronic illness. The AIM intervention has been associated with a 52% decrease in physician visits and high patient and provider satisfaction. On the other hand, a recent meta-analysis of community specialist palliative care with home nursing was inconclusive about whether such services increased the rate of home deaths.⁵⁹

Although a randomized trial in Norway of palliative care coordination of community health care professionals did not show decreased hospitalization,⁶⁰ other research has found a decrease in health care utilization. The AIM project has reported a 54% decrease in hospitalization and an 80% decrease in intensive care unit days during the first 3 months following program enrollment.⁵⁷ The Agency for Healthcare Research and Quality highlights another palliative care innovation, by the Everett Clinic, whereby palliative care nurses monitoring frail elderly in primary care clinics noted a decrease in hospitalizations 60 days or less before death.⁶¹ In the Optimizing Advanced Complex Illness Support (OACIS) project, comparing data during the 18 months before and following enrollment in a home-based palliative care intervention, although emergency room visits were no different, both the number of hospitalizations and the number of hospital days were reduced (p=0.000 for both analyses).⁶² In other studies of emergency department use, long-term care residents with outpatient palliative care services⁵¹ and primary care practice patients with the support of palliative care nurses were less likely to visit the emergency department.⁶³

Recent data have supported the expectation that outpatient palliative care services can result in decreased hospital readmission. Patients discharged with the support of outpatient palliative care services had decreased hospital readmissions.⁶⁴ In the OACIS project, the risk for 30-day hospital readmissions was significantly decreased following implementation of the home-based palliative care intervention (OR=1.66; p=0.02).⁶²

Coinciding with these documented changes in utilization of hospital services, nonhospice outpatient palliative care services are associated with increased and earlier hospice enrollment.⁵⁷ In the Temel study, patients receiving early palliative care had higher enrollment in hospice care for longer than 1 week (60.0% versus 33.3%; p=0.004).³⁴

Reduced cost

Tied directly to the impacts on health care utilization are data demonstrating reduced total health care costs associated with outpatient palliative care. Outpatient palliative care services are “high-touch,” communication-rich, and staffing-intense services that are estimated to generate billing income slightly less that one-half of their practice costs.⁶⁵ However, due to improved efficiency and appropriateness of overall health care utilization, total health care costs for patients receiving outpatient palliative care are decreased. Both the Brumley and the Temel studies demonstrated overall cost reduction in the setting of improved care.^30,36

As in the Muir study, when palliative care clinicians perform some of the clinical care duties for complex, ill patients, other specialists may save time and be able to perform other billable services. But, beyond this theoretical efficiency, numerous trials have shown overall total health care cost savings with outpatient palliative care. As early as 1999, a trial of hospice consultation for prostate cancer patients receiving palliative chemotherapy showed decreased costs in the intervention group.⁶⁶ In the Sutter AIM intervention, average savings per enrollee are reported to be $213 per month.⁵⁷ In early palliative care for patients with multiple sclerosis, average costs, including inpatient care and informal care were £1,789 lower.⁶⁷ In the OACIS project of home-based palliative care, adjusting to exclude outliers, total and variable hospital costs were decreased from $23,386 to $16,467 and from $10,937 and $7,537, respectively (p=0.000 for both analyses).⁶²

On balance, whereas some costs are increased for patients receiving outpatient palliative care (e.g., home care or hospice costs), more expensive interventions are avoided leading to overall health care savings. Such savings are especially important in systems of shared cost/risk, integrated health systems, and accountable care organizations.

Discussion

The scope of palliative care services is rapidly evolving. What started in the United States largely as hospital-based care in the early 1990s is evolving so that palliative care principles and practices are being integrated across the broader landscape of health care settings. A new emphasis on interdisciplinary patient-centered care, a shift in health care reimbursement from fee-for-service to capitated models, the growing research base documenting benefits of palliative care services, national consensus recommendations, and the dramatic expansion of specialist palliative care providers, are all playing a role in the push to increase outpatient services.

With the expansion of outpatient palliative care services comes the responsibility to carefully define clinical, customer, and health care utilization outcomes so that expectations for new service providers, and their funders, are appropriately matched. Compared with the growing literature base of hospital palliative care services, research on outpatient outcomes is quite small. However, the existing data presented in this report do support the hypothesis that outpatient palliative care services can promote improved patient, family, and clinician satisfaction, patient symptoms, and efficiency of health care utilization, thereby reducing total health care costs. Outpatient palliative care functions concurrently with ongoing disease management, offering added value to usual care,^46,68 and is instrumental at helping interested patients transition away from curative care approaches as the end-of-life draws near.⁵⁷

Clearly, there are limitations to the available data. Research methods are inconsistent, making summary of disparate studies difficult. Two prior reviews of palliative interventions and services across multiple settings have recognized this.^19,22 Most of the studies of outpatient palliative care are limited to adult patients with cancer. Studies often use nonuniform definitions of what constitutes outpatient palliative care and nonuniform outcome measures. Notably, much of the data are observational, but several randomized trials have provided pivotal support. Clinic-based and home-based palliative care have been studied most commonly, with scarce research into palliative care provided in the long-term care setting.⁶⁹ More research is needed, especially to replicate early findings of improved mortality with outpatient palliative care, to identify which elements of palliative care are responsible for the documented outcomes, to detail the elements of a sustainable financial model for widespread use of outpatient palliative care, and to develop process steps to identify appropriate patient populations.

Nevertheless, in light of the historic alignment of clinical and health care financing goals,²⁸ the available evidence supports the ongoing expansion of new service models throughout the care continuum, the expansion of outpatient palliative care services to all patients with serious illness, and the full integration of palliative care services across the continuum of care.⁷⁰ Nationally, payors and large health systems have become interested in exploring the potential benefits of expanded outpatient palliative care services.²⁸ Unfortunately, current assessments in the United States suggest that the outpatient palliative care capacity to meet this burgeoning demand is severely limited.^65,71–73 Having demonstrated the benefits of outpatient palliative care, developing and staffing adequate services to provide this care is the next urgent goal alongside continued research to explore a new set of operational questions: What is the optimal staffing paradigm for different nonhospital settings that promotes quality and efficient care? What is the right balance of utilizing palliative care specialists versus improved training at the generalist palliative care level? What is the optimum role of the palliative care specialist in terms of providing longitudinal services versus serving purely in a consultant role? These and a host of related questions will need answering as the new era of health care financing emerges in the coming years.

Footnotes

Author Disclosure Statement

No conflicting financial interests exist.

References

Center to Advance Palliative Care: Defining palliative care. //www.capc.org/building-a-hospital-based-palliative-care-program/case/definingpc (Last accessed February 13, 2013).

Meier

, Beresford

: Outpatient clinics are a new frontier for palliative care. J Palliat Med, 2008; 11:823–828.

Center to Advance Palliative Care: A State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals. www.capc.org/reportcard/findings (Last accessed January 6, 2013).

Center to Advance Palliative Care: Overview of Outpatient Palliative Care Models www.capc.org/ipal/ipal-op/monographs-and-publications (Last accessed February 13, 2013).

National Cancer Policy Board, National Research Council: Improving Palliative Care for Cancer. Foley

, Gelband

(eds). Washington, DC: The National Academies Press, 2001.

World Health Organization: Cancer Control: Diagnosis and Treatment., Geneva: WHO Publications, 2008.

National Quality Forum (NQF): A National Framework and Preferred Practices for Palliative and Hospice Care Quality. Washington, DC: NQF, 2006, p. VI.

Smith

, Temin

, Alesi

, et al.; American Society of Clinical Oncology Provisional Clinical Opinion: The integration of palliative care into standard oncology care. J Clin Oncol, 2012; 30:880–887.

American College of Surgeons, Commission on Cancer: 2012 Standards. www.facs.org/cancer/index.html (Last accessed January 6, 2013).

10.

Levy

, Back

, Benedetti

, et al.: NCCN clinical practice guidelines in oncology: Palliative care. J Natl Compr Canc Netw, 2009; 7:436–473.

11.

Hunt

, Abraham

, Chin

, Feldman

, Francis

, Ganiats

, Jessup

, Konstam

, Mancini

. Michl

, Oates

, Rahko

, Silver

, Stevenson

, Yancy

, Antman

, Smith

, Adams

Jr , Anderson

, Faxon

, Fuster

, Halperin

, Hiratzka

, Jacobs

, Nishimura

, Ornato

, Page

, Riegel

; American College of Cardiology; American Heart Association Task Force on Practice Guidelines; American College of Chest Physicians; International Society for Heart Lung Transplantation; Heart Rhythm Society: ACC/AHA 2005 Guideline Update for the Diagnosis and Management of Chronic Heart Failure in the Adult. Circulation, 2005; 112:e154–e235.

12.

Mahler

, Selecky

, Harrod

, Benditt

, Carrieri-Kohlman

, Curtis

, Manning

, Mularski

, Varkey

, Campbell

, Carter

, Chiong

, Ely

, Hansen-Flaschen

, O'Donnell

, Waller

: American College of Chest Physicians consensus statement on the management of dyspnea in patients with advanced lung or heart disease. Chest, 2010; 137:674–691.

13.

Ferris

, Bruera

, Cherny

, et al.: Palliative cancer care a decade later: Accomplishments, the need, next steps from the American Society of Clinical Oncology. J Clin Oncol, 2009; 27:3052–3058.

14.

Gade

, Venohr

, Conner

, McGrady

, Beane

, Richardson

, Williams

, Liberson

, Blum

, Della Penna

: Impact of an inpatient palliative care team: a randomized control trial. J Palliat Med, 2008; 11:180–190.

15.

Bandieri

, Sichetti

, Romero

, et al.: Impact of early access to a palliative/supportive care intervention on pain management in patients with cancer. Ann Oncol, 2012; 23:2016–2020.

16.

Higginson

, Finlay

, Goodwin

, Hood

, Edwards

, Cook

, Douglas

, Normand

: Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers?. J Pain Symptom Manage, 2003; 25:150–168.

17.

Finlay

, Higginson

, Goodwin

, Cook

, Edwards

, Hood

, Douglas

, Normand

: Palliative care in hospital, hospice, at home: Results from a systematic review. Ann Oncol, 2002; 13(Suppl 4):257–264.

18.

Higginson

, Finlay

, Goodwin

, Cook

, Hood

, Edwards

, Douglas

, Norman

: Do hospital-based palliative teams improve care for patients or families at the end of life?. J Pain Symptom Manage, 2002; 23:96–106.

19.

Zimmermann

, Riechelmann

, Krzyzanowska

, Rodin

, Tannock

: Effectiveness of specialized palliative care: a systematic review. JAMA, 2008; 299:1698–1709.

20.

Morrison

, Dietrich

, Ladwig

, Quill

, Sacco

, Tangeman

, Meier

: Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood), 2011; 30:454–463.

21.

Morrison

, Penrod

, Cassel

, Caust-Ellenbogen

, Litke

, Spragens

, Meier

; Palliative Care Leadership Centers' Outcomes Group. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med, 2008; 168:1783–1790.

22.

El-Jawahri

, Greer

, Temel

: Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol, 2011; 9:87–94.

23.

Hearn

, Higginson

: Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med, 1998; 12:317–332.

24.

Connor

, Pyenson

, Fitch

, et al.: Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage, 2007; 33:238–246.

25.

Candy

, Holman

, Leurent

, Davis

, Jones

: Hospice care delivered at home, in nursing homes and in dedicated hospice facilities: A systematic review of quantitative and qualitative evidence. Int J Nurs Stud, 2011; 48:121–133.

26.

Wright

, Keating

, Balboni

, Matulonis

, Block

, Prigerson

: Place of death: Correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol, 2010; 28:4457–4464.

27.

Muir

, Daly

, Davis

, et al.: Integrating palliative care into the outpatient, private practice oncology setting. J Pain Symptom Manage, 2010; 40:126–135.

28.

Senator Debbie Stabenow speaking at a Senate Finance Committee hearing on Modernizing Medicare and Medicaid, C-SPAN recording. www.hom.org/?page_id=6773 (Last accessed May 31, 2013).

29.

Brumley

, Enguidanos

, Cherin

: Effectiveness of a home-based palliative care program for end-of-life. J Palliat Med, 2003; 6:715–725.

30.

Brumley

, Enguidanos

, Jamison

, Seitz

, Morgenstern

, Saito

, McIlwane

, Hillary

, Gonzalez

: Increased satisfaction with care and lower costs: Results of a randomized trial of in-home palliative care. J Am Geriatr Soc, 2007; 55:993–1000.

31.

Rabow

, Dibble

, Pantilat

, McPhee

: The comprehensive care team: A controlled trial of outpatient palliative medicine consultation. Arch Intern Med, 2004; 164:83–91.

32.

Rabow

, Schanche

, Petersen

, Dibble

, McPhee

: Patient perceptions of an outpatient palliative care intervention: “It had been on my mind before, but I did not know how to start talking about death.…”. J Pain Symptom Manage, 2003; 26:1010–1015.

33.

Bakitas

, Lyons

, Hegel

, et al.: Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. JAMA, 2009; 302:741–749.

34.

Temel

, Greer

, Muzikansky

, et al.: Early palliative care for patients with metastatic non small-cell lung cancer. N Engl J Med, 2010; 363:733–742.

35.

Greer

, Pirl

, Jackson

, Muzikansky

, Lennes

, Heist

, Gallagher

, Temel

: Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol, 2012; 30:394–400.

36.

Greer

, McMahon

, Tramontano

, et al.: Effect of early palliative care on health care costs in patients with metastatic NSCLC. J Clin Oncol, 2012; 30(suppl; abstr 6004).

37.

Strasser

, Sweeney

, Willey

, Benisch-Tolley

, Palmer

, Bruera

: Impact of a half-day multidisciplinary symptom control and palliative care outpatient clinic in a comprehensive cancer center on recommendations, symptom intensity, and patient satisfaction: A retrospective descriptive study. J Pain Symptom Manage, 2004; 27:481–491.

38.

Follwell

, Burman

, Le

, et al.: Phase II study of an outpatient palliative care intervention in patients with metastatic cancer. J Clin Oncol, 2009; 27:206–213.

39.

Bruera

, Michaud

, Vigano

, Neumann

, Watanabe

, Hanson

: Multidisciplinary symptom control clinic in a cancer center: A retrospective study. Support Care Cancer, 2001; 9:162–168.

40.

Paiva

, Faria

, Nascimento

, Dos Santos

, Scapulatempo

, Costa

, Paiva

: Effectiveness of a palliative care outpatient programme in improving cancer-related symptoms among ambulatory Brazilian patients. Eur J Cancer Care (Engl), 2012; 21:124–130.

41.

Ringdal

, Jordhøy

, Kaasa

: Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. J Pain Symptom Manage, 2002; 24:53–63.

42.

Siden

, Straatman

, Miller

, Ham

: The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic. Paediatr Child Health, 2009; 14:379–384.

43.

Abernethy

, Currow

, Fazekas

, Luszcz

, Wheeler

, Kuchibhatla

: Specialized palliative care services are associated with improved short- and long-term caregiver outcomes. Support Care Cancer, 2008; 16:585–597.

44.

Higginson

, Costantini

, Silber

, Burman

, Edmonds

: Evaluation of a new model of short-term palliative care for people severely affected with multiple sclerosis: A randomised fast-track trial to test timing of referral and how long the effect is maintained. Postgrad Med J, 2011; 87:769–775.

45.

Sinclair

: Impact of death and dying on the personal lives and practices of palliative and hospice care professionals. CMAJ, 2011; 183:180–187.

46.

Yoong

, Park

, Greer

, Jackson

, Gallagher

, Pirl

, Back

, Temel

: Early palliative care in advanced lung cancer: A qualitative study. JAMA Intern Med, 2013; 173:283–290.

47.

Yennurajalingam

, Urbauer

, Casper

KLB

, et al.: Impact of a palliative care consultation team on cancer-related symptoms in advanced cancer patients referred to an outpatient supportive care clinic. J Pain Symptom Manage, 2011; 41:49–56.

48.

Yennurajalingam

, Atkinson

, Masterson

, Hui

, Urbauer

, Tu

, Bruera

: The impact of an outpatient palliative care consultation on symptom burden in advanced prostate cancer patients. J Palliat Med, 2012; 15:20–24.

49.

Bischoff

, Weinberg

, Rabow

: Palliative and oncologic co-management: Symptom Management for outpatients with cancer. Supp Care Cancer, 2013; 21:2013–2021.

50.

Dyar

, Lesperance

, Shannon

, Sloan

, Colon-Otero

: A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: Results of a randomized pilot study. J Palliat Med, 2012; 15:890–895.

51.

Evangelista

, Lombardo

, Malik

, Ballard-Hernandez

, Motie

, Liao

: Examining the effects of an outpatient palliative care consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure. J Card Fail, 2012; 18:894–899.

52.

Harding

, Karus

, Easterbrook

, Raveis

, Higginson

, Marconi

: Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sex Transm Infect, 2005; 81:5–14.

53.

Comart

, Mahler

, Schreiber

, Rockett

, Jones

, Morris

, Van Haitsma

: Palliative care for long-term care residents: Effect on clinical outcomes. Gerontologist, 2013; 53; 874–880.

54.

Casarett

, Pickard

, Bailey

, Ritchie

, Furman

, Rosenfeld

, Shreve

, Chen

, Shea

: Do palliative consultations improve patient outcomes?. J Am Geriatr Soc, 2008; 56:593–599.

55.

Howell

, Marshall

, Brazil

, Taniguchi

, Howard

, Foster

, Thabane

: A shared care model pilot for palliative home care in a rural area: Impact on symptoms, distress, and place of death. J Pain Symptom Manage, 2011; 42:60–75.

56.

Prince-Paul

, Burant

, Saltzman

, Teston

, Matthews

: The effects of integrating an advanced practice palliative care nurse in a community oncology center: A pilot study. J Support Oncol, 2010; 8:21–27.

57.

Agency for Healthcare Research and Quality: System-integrated program coordinates care for people with advanced illness, leading to greater use of hospice services, lower utilization and costs, and high satisfaction. www.innovations.ahrq.gov/content.aspx?id=3370 (Last accessed February 16, 2013).

58.

Labson

, Sacco

, Weissman

, Gornet

, Stuart

: Innovative models of home-based palliative care. Cleve Clin J Med, 2013; 80(Electronic Suppl 1):eS30–eS35.

59.

Luckett

, Davidson

, Lam

, Phillips

, Currow

, Agar

: Do community specialist palliative care services that provide home nursing increase rates of home death for people with life-limiting illnesses? A systematic review and meta-analysis of comparative studies. J Pain Symptom Manage, 2013; 45:279–297.

60.

Jordhøy

, Fayers

, Saltnes

, Ahlner-Elmqvist

, Jannert

, Kaasa

: A palliative-care intervention and death at home: A cluster randomised trial. Lancet, 2000; 356:888–893.

61.

Agency for Healthcare Research and Quality: Palliative care nurses in primary care clinics reduce hospital admissions, increase use of hospice and home care for patients nearing end of life. www.innovations.ahrq.gov/content.aspx?id=1738 (Last accessed February 16, 2013).

62.

Lukas

, Foltz

, Paxton

: Hospital outcomes for a home-based palliative medicine consulting service. J Palliat Med, 2013; 16:179–184.

63.

Trisolini

, Pope

, Kautter

, et al.: Medicare physician group practices: Innovations in quality and efficiency. The Commonwealth Fund and RTI International. Dec. 2006:8–10. www.commonwealthfund.org/publications/publications_show.htm?doc_id=428880 (Last accessed February 16, 2013).

64.

Enguidanos

, Vesper

, Lorenz

: 30-Day readmissions among seriously ill older adults. J Palliat Med, 2012; 15:1356–1361.

65.

Rabow

, Smith

, Braun

, Weissman

: Outpatient palliative care practices. Arch Intern Med, 2010; 170:654–655.

66.

Esper

, Hampton

, Finn

, Smith

, Regiani

, Pienta

: A new concept in cancer care: The supportive care program. Am J Hosp Palliat Care, 1999; 16:713–722.

67.

Higginson

, McCrone

, Hart

, Burman

, Silber

, Edmonds

: Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage, 2009; 38:816–826.

68.

Ramchandran

, Von Roenn

: Palliative care always. Oncology (Williston Park), 2013; 27:13–6, 27–30, 32–34 passim.

69.

Froggatt

, Wilson

, Justice

, Macadam

, Leibovici

, Kinch

, Thomas

, Choi

: End-of-life care in long-term care settings for older people: A literature review. Int J Older People Nurs, 2006; 1:45–50.

70.

Kamal

, Currow

, Ritchie

, Bull

, Abernethy

: Community-based palliative care: The Natural evolution for palliative care delivery in the U.S. J Pain Symptom Manage, 2013; 46:254–264.

71.

Hui

, Elsayem

, De la Cruz

, et al.: Availability and integration of palliative care at US cancer centers. JAMA, 2010; 303:1054–1061.

72.

Smith

, Thai

, Bakitas

, Meier

, Spragens

, Temel

, Weissman

, Rabow

: The diverse landscape of palliative care clinics. J Palliat Med, 2013; 16:661–668.

73.

Berger

, O'Riordan

, Kerr

, Pantilat

: Prevalence and characteristics of outpatient palliative care services in California. Arch Intern Med, 2011; 171:2057–2059.