Palliative Care Encompasses Much More Than End-of-Life Care

Morvarid “Mo” Rezaie, DO, HMDC, FACOI, a palliative care physician at The Center for Cancer & Blood Disorders in Fort Worth, Texas, kicked off her discussion on the first day of this year’s virtual Community Oncology Conference by addressing and attempting to dispel the top myth surrounding palliative care: that it is tantamount to end-of-life care.

In her session, “Integrating Palliative Care Into Community Practice,” Rezaie fought back against this stereotype, arguing that palliative care is about bringing the best cancer care to patients in the communities in which they live, by using a streamlined and efficient method to do so early in the disease process.

“The focus is on alleviating suffering by mean of managing symptoms, including not only physical pain, but the psychosocial world and the spiritual world, as well,” she explained.

Even the World Health Organization doesn’t define palliative care in terms of care at the end of life, she added. In fact, their definition focuses on making better the lives patients are living now and not always preparing them for something worse down the road.

“The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing problems that arise from any kind of life-threatening and potentially life-limiting illness that's chronic,” she stated.

Palliative care needs to start earlier, she stressed, as it typically begins too late in the disease trajectory for patients to receive the most benefit.

“Solid palliative care unfortunately gets incorporated late into a patient's care, whenever it comes to advanced stage cancer, because it has such an impact potential to improve quality of life and even reduce use of medical services, especially toward the end of life,” she said. “We really need to try to incorporate it early on.”

Doing so, she continued, improves quality of life, improves quality of care, and has the potential to have a meaningful impact on survival. To illustrate her point, she presented 2 landmark studies.

The first study, published in The New England Journal of Medicine in 2009, came out when non–small cell lung cancer (NSCLC) was the worldwide leader in cancer-related death, Rezaie noted. The authors’ hypothesis was that oncology really needed to incorporate palliative care early on.

“Once somebody was diagnosed with this advanced stage, NSCLC, which has a prognosis of 1 year or less, palliative care would provide a better quality of life, lower rates of depression, and actually less aggressive care toward the end of life,” she said.

This nonblinded, randomized, controlled trial ran from June of 2006 to July of 2009 and encompassed ambulatory patients with newly diagnosed metastatic NSCLC (within the previous 8 weeks). The 2 patient cohorts (N = 151) were (1) early palliative care with standard oncologic care and (2) standard oncologic care alone, and the primary outcome was change in baseline to 12 weeks in the Trial Outcome Index score. To be eligible to participate, patients also had to have an Eastern Cooperative Oncology Group performance status of 0 to 2.

In the treatment arm, clinicians documented patients’ understanding and education of their illness, made sure that treatment goals were defined, assisted with any kind of decision-making, and assisted with symptom management, “which is kind of the core of palliative care,” Rezaie said.

At baseline, no significant differences were seen between the groups regarding quality of life and mood. However, when the groups were assessed later on, those in the early palliative care group had significantly higher scores on the Functional Assessment of Cancer Therapy – Lung scale, the Lung Cancer Subscale, and the Trial Outcome Index. Fewer patients also exhibited signs of depression, and survival was deemed significantly longer compared with the standard care group: 11.6 vs 8.9 months (P = .02).

Meanwhile, with a median 5.7-month follow-up, those in the standard care group were more likely to receive aggressive end-of-life care and fewer had addressed their resuscitation preferences, which is an area Rezaie deemed “especially important.”

In the second study she presented, the randomized, controlled Project ENABLE II (Educate, Nurture, Advise, Before, Life, Ends) trial, the investigators incorporated the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care. Patient-reported outcomes (PROs) were quality of life, symptom intensity, and mood.

“These guidelines stipulate that a palliative care referral should be made at the time of the life-threatening diagnosis, via cancer or not. Really, for anything that's considered chronic and potentially life-limiting, chronic care should be evolved right at the get go,” Rezaie explained.

Patients in this study (N = 322) had been handed a life-limiting cancer diagnosis (metastatic lung cancer, unresectable gastrointestinal tract cancers, genitourinary cancer, breast cancer) with a prognosis of no less than 1 year and were enrolled from November 2003 through Mary 2007. They were divided into 2 groups: the intervention arm contained a comprehensive care model (case management, patient education, empowerment of patients, assessing distress) and the control arm was usual care (all oncologic and support services without restrictions).

As with the first study, there were no significant differences at baseline in the 3 PROs. However, differences did become evident between the groups with time. Patients in the intervention group were more likely to have functionality improvements, lower symptom severity, higher quality of life scores, and lower rates of depression.

“There really was no effect on anticancer treatment,” Rezaie noted, “but the emphasis throughout the entire study was the communicating during times when the anticancer treatments were less likely to help the disease progression and to alleviate symptoms.”

This interdisciplinary attention on improving all aspects of not only the patients’ lives, but their families as well—physical, psychological, social, spiritual, and existential needs—highlights the complex needs that permeate cancer care, especially since many patients have needs their oncology care team can’t manage on its own. There are both primary care needs (eg, foundational symptom management, comprehensive oncologist-delivered care) and secondary/consultive needs, or integrative care.

What these studies have in common is they show the benefits of integrating palliative care in the form of increased social support, patient self-advocacy, coordinated and improved medical care, and improved clinical outcomes. In fact, she added, the American Society of Clinical Oncology recommends palliative care be introduced early in the disease course and the National Comprehensive Cancer Network recommends doing so at diagnosis.

To that point, Rezaie noted, there are 4 keys to successfully integrating palliative care into practice:

1. Raising community and provider awareness
2. Having supportive partnerships
3. Evaluating its impact
4. Ensuring it is sustainable

“Patients with cancer are very complex and have lots of problems and symptoms. We’re here to offer supportive care,” she explained. “I’m not the Grim Reaper, and I’m not always here to talk about hospice and ending their treatment.”