Originally published as JCO Early Release 10.1200/JCO.2008.20.2671 on December 8 2008

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Palliative Care and Oncology: Growing Better Together

Ira Byock

Norris Cotton Cancer Center, Dartmouth-Hitchcock Medical Center, Lebanon, NH

In this issue of Journal of Clinical Oncology, Follwell et al¹ report on a phase II study of an outpatient palliative care clinic (OPCC) for patients with metastatic cancer. Primary outcomes were patient-reported symptom distress and satisfaction with care. The study found statistically significant improvements in satisfaction with care and in scores of pain, fatigue, nausea, appetite, dyspnea, insomnia, constipation, and emotional symptoms of anxiety and depression.

The clinical significance of these findings is suggested by the magnitude of improvements, which was 15% to 20% of baseline totals on the Edmonton Symptom Assessment Scale and FAMCARE satisfaction survey at 1 week. In addition, the changes were largely sustained at 1 month, at a time when patients were at risk for disease progression and worsening of symptoms. This study, therefore, adds to a growing body of evidence supporting the feasibility, general acceptance, and efficacy of both inpatient and outpatient palliative care.^2-5

The study also confirms the feasibility of palliative care research in patients with advanced disease. Although some attrition from the protocol occurred as expected, the burden on respondents was minimized, with a sufficient number of patients retained to enable meaningful analyses of serial data. The authors rightly point to a need for randomized studies of the efficacy of palliative care. Given the magnitude of improvements in symptoms found in the study by Follwell et al, randomized studies comparing palliative care versus usual care should be designed to allow for early termination if the control group shows persistently elevated levels of distress.

Consistent with recommendations of the American Society of Clinical Oncology, the National Cancer Policy Board, and the National Comprehensive Cancer Network, concurrent palliative care is becoming acknowledged as a best practice for patients undergoing disease-modifying treatments for advanced cancer.^6-9 The clinic model represented by this study is one of several forms of outpatient palliative care programs, emerging as extensions of hospital-based consultation services, community-based hospices, and cancer centers. Comparative trials are also needed for alternative approaches to delivering palliative care to ambulatory patients. As described, the OPCC at Princess Margaret Hospital is relatively narrowly focused, primarily on symptoms. Although the dose of the palliative care intervention delivered to each patient (ie, the number or duration of visits and telephone contact or the range of issues addressed) is not reported, it was limited to one or a few clinic visits with intermittent telephone follow-up. In the majority (66%) of patients, the consultation resulted in adding one or more medications; existing medications were changed in 34% and discontinued in 18% of patients. Referrals were made to a variety of services, including home nursing (46.7%), home palliative care physicians (37.3%), social work (29.3%), physical or occupational therapy (12%), and psychology or psychiatry (10%).

The report does not delineate the extent of care planning and patient and caregiver counseling offered during these visits. In addition to managing symptoms, palliative care teams commonly assist patients and families with clarifying goals of care; support decision making regarding treatment options; and create tailored crisis prevention and early crisis management plans. They also assess family stress and provide practical support for family caregivers (in accessing resources to help in the home, problem-solving, and practicing self-care); screen for spiritual distress and support spiritual well-being; and extend basic counseling and guidance to assist with the difficult adjustments to progressive illness, including matters of life completion and closure.^10,11 Services of this nature may well have been provided by the OPCC at the Princess Margaret Hospital (Toronto, Ontario, Canada), although corresponding outcomes were not measured in the study. Of note, 39% of patients enrolled were referred to the clinic primarily for end-of-life planning.

Additional outcomes of interest to cancer patients, clinicians, and health systems may be affected by palliative care. In a large retrospective study of Medicare data, hospice care was associated with a significant mean survival advantage of 29 days for patients with lung and pancreatic cancers.¹² Palliative care services have been associated with decreases in costs in studies of hospital consultations, a hospital-based palliative care unit, and predominantly home-based hospice care.^13-15

For those of us within the young specialty of hospice and palliative medicine, the growing evidence base in support of the efficacy and value of our discipline is cause for celebration. Specialty inpatient and outpatient palliative care services may well prove effective and continue to flourish. Caution is warranted amid our enthusiasm, lest those of us seeking to advance and expand palliative care inadvertently propagate a provider-centric orientation, rather than the patient- and family-centered approach we desire. Palliative care programs and clinics are instrumental, but are not ends in themselves. Simply stated: it is not about us, and never was. Specialist clinicians and teams represent structures and related processes of health care. Although worthy foci for health service research, the structures and processes of care must not divert attention from the outcomes that matter most to people living with cancer and their families. The touchstone for palliative care remains the experience of those we serve. Follwell et al were wise to choose self-reported patient symptoms and satisfaction with care as their study's primary outcomes. Additional patient- and family-centered outcomes might include subjective quality of life, caregiver burden, quality of dying and death, and quality of care.

In common with the program at Princess Margaret Hospital, palliative care consultations often require referral from providers. This approach risks under-referral of patients who might benefit from specialty service. Alternative methods include routine screening for referral criteria on the basis of stage of disease or severity of symptoms. In some centers, all patients with specific diagnoses, such as pancreatic cancer, glioblastomas, or hepatocellular carcinoma, are seen by palliative care clinicians as an integral part of their cancer care.

However, the most liberal referral procedures to palliative care will not address the needs of many cancer patients who deserve and would likely benefit from the interdisciplinary team approach that palliative care represents. Newly diagnosed patients may struggle with the practical, physical, emotional, social, and even spiritual challenges of staging and early treatment. So, too, people living with cancer as a chronic illness commonly deal with pain or other symptoms or disability related either to their cancer or treatments. These effects can include assaults on personal—often intimate—aspects of people's lives. Even cancer survivors who may have no evidence of disease are not free from myriad lingering effects of cancer and its treatments.

Naturally, people do not always fit neatly into one of these categories—being treated for cure, living with, dying from, or surviving cancer—and the clinicians who serve them must resist being constrained within arbitrary silos of services. Inevitably, clinicians must assess and respond to each patient and family, recognizing the particularity of their condition (diagnoses and comorbidities), symptoms, values, beliefs, hopes, fears, and preferences, as well as their living environments and social situations. As valuable as our specialized training, knowledge, skills, and experience all are, we ultimately become specialized one patient and family at a time. At the end of the day, it is not our segmented programs and specialties that matter, but the special expertise we bring to the collaborative process of patient and family care.

One can imagine future oncology teams that have absorbed components of palliative care, rehabilitative, and survivor services within a seamless, longitudinal patient- and family-centered care process. Until then, in each of our local health systems and practices we can strive to achieve the goal that was well-articulated by the American Society of Clinical Oncology 1998 statement of principle: "Cancer care optimizes quality of life throughout the course of an illness through meticulous attention to the myriad physical, spiritual, and psychosocial needs of the patient and family."⁶ The development of outpatient palliative care clinics is a welcome step in the right direction and a valuable addition to the services available to cancer patients and families.

AUTHOR'S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The author(s) indicated no potential conflicts of interest.

NOTES

published online ahead of print at www.jco.org on December 8, 2008

REFERENCES

1. Follwell M, Burman D, Le LW, et al: Phase II study of an outpatient palliative care intervention in patients with metastatic cancer. J Clin Oncol [epub ahead of print on December 8, 2008]

2. Casarett DJ, Hirschman KB, Coffey JF, et al: Does a palliative care clinic have a role in improving end-of-life care? Results of a pilot program. J Palliat Med 5:387-396, 2002[CrossRef][Medline]

3. Strasser F, Sweeney C, Willey J, et al: 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 27:481-491, 2004[CrossRef][Medline]

4. Rabow MW, Dibble SL, Pantilat SZ, et al: The comprehensive care team: A controlled trial of outpatient palliative medicine consultation. Arch Intern Med 164:83-91, 2004[Abstract/Free Full Text]

5. O'Mahony S, Blank AE, Zallman L, et al: The benefits of a hospital-based inpatient palliative care consultation service: Preliminary outcome data. J Palliat Med 8:1033-1039, 2005[CrossRef][Medline]

6. Cancer care during the last phase of life. J Clin Oncol 16:1986-1996, 1998[Abstract]

7. Approaching death: Improving care at the end of life—A report of the Institute of Medicine. Health Serv Res 33:1-3, 1998[Medline]

8. National Cancer Policy Board: Improving Palliative Care for Cancer. Washington, DC, National Research Council, 2001

9. Levy MH, Weinstein SM, Carducci MA: NCCN: Palliative care. Cancer Control 8:66-71, 2001 (suppl 2)[Medline]

10. Byock I, Twohig JS, Merriman M, et al: Promoting excellence in end-of-life care: A report on innovative models of palliative care. J Palliat Med 9:137-151, 2006[CrossRef][Medline]

11. National Hospice Organization Standards and Accreditation Committee. A pathway for patients and families facing terminal disease. Arlington, VA, National Hospice Organization, 1997

12. Connor SR, Pyenson B, Fitch K, et al: Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage 33:238-246, 2007[CrossRef][Medline]

13. Morrison RS, Penrod JD, Cassel JB, et al: Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med 168:1783-1790, 2008[Abstract/Free Full Text]

14. Smith TJ, Coyne P, Cassel B, et al: A high-volume specialist palliative care unit and team may reduce in-hospital end-of-life care costs. J Palliat Med 6:699-705, 2003[CrossRef][Medline]

15. Taylor DH Jr, Ostermann J, Van Houtven CH, et al: What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program? Soc Sci Med. 65:1466-1478, 2007[CrossRef][Medline]

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