Early Palliative Care: Moving From ‘Why’ to ‘How’
Early Palliative Care: Moving From ‘Why’ to ‘How’
Drs. Ramchandran and Von Roenn present a compelling case for the involvement of palliative care throughout the trajectory of cancer treatment. They provide sound evidence, cite guidelines, and illustrate the need for a model of "palliative care always" via a case-based discussion. However, they also acknowledge that there remain barriers to the implementation of such a model. These barriers, which are both ideological and practical, perpetuate the dichotomy between published guidelines supporting early palliative care and the reality of clinical practice. As evidence continues to accumulate for the implementation of an integrated model of palliative care and oncology, attention is increasingly being directed toward the "how" of such a model.
The evidence for the timely involvement of palliative care teams has become very strong. Earlier randomized trials of palliative care tended to recruit patients who were quite close to the end of life, which presented difficulties with recruitment, attrition, and cross-over from the control to the intervention group.[1,2] Recent trials have specifically tested the early involvement of palliative care teams and have shown convincingly that a model of early palliative care is effective in improving quality of life, satisfaction with care, mood, and in some cases survival.[3-5] In addition to the landmark study by Temel et al in patients with non−small-cell lung cancer, a study of patients with gastrointestinal, genitourinary, lung, and breast cancershas also demonstrated the effectiveness of early palliative care, as has a cluster-randomized trial of patients with lung, gastrointestinal, genitourinary, breast, and gynecological cancers, recently presented at ASCO.
Ramchandran and Von Roenn raise the important question of who should provide palliative care, and whether this should be done exclusively by the primary oncology team, or also involve secondary and tertiary care by palliative care teams. The model of care in two of the randomized trials mentioned above was that of an outpatient palliative care team, the core of which consisted of a palliative care physician and nurse.[3,5] In contrast, in the case study presented by Ramchandran and Von Roenn, specialized palliative care and hospice were introduced late in the cancer trajectory. In addition to physical symptoms, myriad psychological, social, functional, and spiritual challenges are associated with recurrent or metastatic cancer.[6,7] Palliative care teams are well placed to support patients and their families through all of these issues, using an interdisciplinary approach and systematic assessment strategies. An integrated care model, in which palliative care services are involved from the time of diagnosis to address the various challenges associated with cancer, ensures that all aspects of the patient’s care are addressed in an organized fashion.
Although oncologists tend to agree that early referral to palliative care teams is desirable in principle, studies have consistently shown that patients are referred very late, often within the last months of life.[10,11] A recent study assessing Canadian oncologists’ referral practices to specialized palliative care services demonstrated that one-third would typically refer only after anti-cancer treatments were stopped. Earlier referral was associated with satisfaction with the availability of palliative care services—and was also associated with reported acceptance by palliative care teams of patients receiving concurrent chemotherapy. Interestingly, oncologists who had completed a rotation in palliative care during their training were more likely to refer patients early—at the diagnosis of cancer or of advanced disease. This indicates that education of oncologists in palliative care is of benefit not only with regard to the self-provision of palliative care, but in the acknowledgement that an integrated approach to palliative care is preferable to a solo practice model.
As pointed out by Ramchandran and Von Roenn, misperceptions of palliative care abound, including the long-standing fear that referral will be equated with the removal of hope. In fact, no study to date examining early palliative care interventions has reported any adverse effects as a result of the referral or its timing, even where discussions about end-of-life care planning took place. Instead, palliative care teams have been shown to be an invaluable source of information for patients regarding their illness, treatment options, and prognosis.[15,16] Delaying conversations about advance planning until the patient’s status begins to deteriorate is also associated with more aggressive end-of-life care, which may not reflect patient preferences.
The misperception that palliative care is synonymous with end-of-life care stems from the fact that palliative care teams have traditionally been aligned with care at the later stages of disease, provided by hospital inpatient and community hospice services. In order to change the model of care to one of early involvement, palliative care needs to be provided in an outpatient setting, where most of oncology care now occurs, and it needs to be provided concurrently with anti-cancer treatment. Oncology palliative care clinics have been shown to be beneficial and acceptable to patients,[3,5,8] but many cancer centers do not have them. Expanding palliative care services to provide organized outpatient care is certainly an investment, but the potential savings gained by fewer emergency visits, fewer and shorter hospital admissions, and less inappropriately aggressive treatment at the end of life are worthy of consideration.
As indicated by Ramchandran and Von Roenn, advances in treatment are gradually transforming cancer into a chronic illness with extended survival, but also with longer-term psychosocial and symptom control needs. Integrating palliative care from the time of diagnosis can support both patients and families through difficult periods and prepare them for the journey ahead. It can improve quality of life while curtailing healthcare spending and increasing satisfaction with oncology care. The question now is becoming not whether we can afford to implement such a model, but whether we can afford not to.
Financial Disclosure: The authors have no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.
1. Zimmermann C, Riechelmann R, Krzyzanowska M, et al. Effectiveness of specialized palliative care: a systematic review. JAMA. 2008;299:1698-1709.
2. Rinck GC, van den Bos GA, Kleijnen J, et al. Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol. 1997;15:1698-1709.
3. Temel JS, Greer JA, Musikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363:733-42.
4. Bakitas M, Lyons KD, Hegel MT, 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;302:741-9.
5. Zimmermann C, Swami N, Rodin G, et al. Cluster-randomized trial of early palliative care for patients with metastatic cancer. J Clin Oncol. 2012;30(suppl):abstr 9003.
6. Storey DJ, Fallon MT, Smyth JF. The interface between medical oncology and supportive and palliative cancer care. Semin Oncol. 2011;38:337-42.
7. Von Roenn JH, Temel J. The integration of palliative care and oncology: the evidence. Oncology (Williston Park). 2011;25:1258-60,1262,1264-5.
8. 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. 2009;27:206-13.
9. Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol. 2010;28:4013-7.
10. Cheng W, Willey J, Palmer L, et al. Interval between palliative care referral and death among patients treated at a comprehensive cancer center. J Palliat Med. 2005;8:1025-32.
11. El Osta B, Palmer JL, Paraskevopoulos T, et al. Interval between first palliative care consult and death in patients diagnosed with advanced cancer at a comprehensive cancer center. J Palliat Med. 2008;11:51-7.
12. Wentlandt K, Krzyzanowska MK, Swami N, et al. Referral practices of oncologists to specialized palliative care. J Clin Oncol. 2012;30:4380-6.
13. Freireich EJ, Kurzrock R. The role of investigational therapy in management of patients with advanced metastatic malignancy. J Clin Oncol. 2009;27:304-6.
14. Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30:880-7.
15. Maloney C, Lyons K, Li Z, et al. Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: benefits and burdens. Palliat Med. 2012 May 9. [Epub ahead of print]
16. Devery K, Lennie I, Cooney N. Health outcomes for people who use palliative care services. J Palliat Care. 1999;15:5-12.
17. Mack JW, Cronin A, Keating NL, et al. Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol. 2012;30:4387-95.
18. Hui D, Elsayem A, De la Cruz M, et al. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303:1054-61.
19. Meier DE, Beresford L. Outpatient clinics are a new frontier for palliative care. J Palliat Med. 2008;11:823-8.