Advocates call for early integration of palliative care into cancer therapy

Several randomized studies conducted in the past few years reveal the clinical benefits of palliative care for patients with cancer, particularly if it is utilized at or soon after diagnosis.

Based on study findings, the National Comprehensive Cancer Network released guidelines in 2011 that suggest palliative care be offered throughout the entire course of cancer treatment.

A year later, ASCO published a provisional clinical opinion that recommended palliative care be offered at diagnosis for patients with metastatic disease, as well as for all patients with high symptom burdens regardless of long-term prognosis.

Yet, patient and physician perceptions, a shortage of providers and the belief that symptom and stress relief yields little reward in the pursuit of value-based care have slowed the widespread adoption of this approach.

Consequently, many associations and physician advocates are intensifying their pleas that providers integrate palliative care into the treatment paradigm early rather than limiting it to a component of end-of-life care.

“If we are committed to the best cancer care in this country, then we will be committed to ensuring that palliative care is as much a part of comprehensive care as chemotherapy, radiotherapy or surgery,” said Charles F. von Gunten, MD, PhD, vice president of medical affairs for hospice and palliative care for OhioHealth, a network of hospitals and health care organizations based in Columbus.

HemOnc Today spoke with several clinicians about the benefits of palliative care, the advantages associated with its early integration in the treatment process, and the barriers that must be overcome to make this become standard practice.

A key partnership

About 1.6 million people in the United States will be diagnosed with cancer in 2013, according to data from the SEER database.

Proponents suggest many of those patients would benefit from palliative medicine, designed to help manage symptoms, pain and complications associated with serious illness and maximize patients’ quality of life.

The partnership of oncology specialists with palliative care principles and practices assures patients are in the best possible condition to handle treatment and its side effects, according to Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care at Icahn School of Medicine at Mount Sinai. 

The partnership of oncology specialists with palliative care principles and practices assures patients are in the best possible condition to handle treatment and its side effects, according to Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care at Icahn School of Medicine at Mount Sinai.

Source: Photo courtesy of Center to Advance Palliative Care

“The partnership of oncology specialists with palliative care principles and practices assures that patients are in the best possible condition to handle the treatment and its side effects and are able to be strong enough to complete an appropriate course of therapy,” Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care at Icahn School of Medicine at Mount Sinai, said in an interview. “The data are very clear that patients who are in pain or who are depressed are far less likely to complete their regimens and have a higher risk of mortality. The data are also increasingly clear that patients who get palliative care at the same time as their cancer management from their oncologist not only feel better — as do their families — they also live longer.”

In a study published in 2010 in The New England Journal of Medicine, Temel and colleagues determined early integration of palliative care in patients with metastatic non–small cell lung cancer improved outcomes.

The analysis included 151 newly diagnosed patients who were randomly assigned to standard cancer treatment with or without early palliative care. Researchers assessed quality of life and mood at baseline and at 12 weeks. By the 12-week mark, 27 patients had died, and 107 patients were able to complete the assessments.

Analysis with the Functional Assessment of Cancer Therapy- Lung (FACT-L) scale (score range, 0-136) showed patients in the early integration group had higher mean quality-of-life scores (98 vs. 91.5; P=.003) and reduced incidence of depressive symptoms (16% vs. 38%; P=.01). Fewer patients assigned to early palliative care underwent aggressive end-of-life care (33% vs. 54%; P=.05), yet they still demonstrated longer median survival (11.6 months vs. 8.9 months; P=.02).

Project ENABLE II — a randomized controlled trial conducted by Bakitas and colleagues — showed similar results. The analysis included 322 patients with advanced cancer treated at an NCI-designated comprehensive cancer center and affiliated clinics. The most common diagnoses were cancer of the gastrointestinal tract (41%), lung (36%), genitourinary tract (12%) and breast (10%).

Augusto Caraceni, MD

Augusto Caraceni

  • I read with interest the data coming from The University of Texas MD Anderson Cancer Center about the reluctance of oncologists to refer patients to “palliative care” and how referral could be improved by changing the name of the MD Anderson outpatient palliative care clinic to a “supportive care clinic.”

    Another observation in favor of this semantic shift is that palliative care is too negatively connoted in the United States because — in the public understanding — it is immediately related to “hospice,” again suggesting that a change in the name would be useful.

    I am totally against the idea per se and this type of discussion in general, and I will explain why according to different levels of evidence.

    In fact, the debate raised by the MD Anderson group seems to miss some very general points.

    The term that has come to define the field both internationally and in the United States is “palliative care,” encompassing the provision of inpatient hospital and hospice services, as well as outpatient clinic and home care services. Palliative care is well defined within national and international guidelines. In many European countries, including Italy, we have palliative care legislation that identifies palliative care as a discipline within medicine. The European Association for Palliative Care has produced white papers and recommendations for professionals, the public and politicians. All of this work is done under the umbrella of palliative care. To talk about changing it now will create total confusion.

    Supportive care is something else, at least the way it is defined in Europe. Supportive care has some overlapping content with palliative care. However, supportive care also includes other aspects of care, which may be considered just part of oncology or other specialties. The use of antibiotics related to the complications of intensive chemotherapy or radiotherapy, anti-emetics related to the use of chemotherapy and pre-operative nutrition before curative surgery all might be considered supportive care.

    One fundamental disciplinary concept of palliative care is its focus on death and dying — in other words, end-of-life care.

    In “Transforming the culture of dying: The work of the Project on Death in America,” David Clark noted that this is a societal and professional challenge. Today, as health care is improving, survival for cancer is improving; however, the cure rate has not changed dramatically. People still die from cancer, as well as chronic heart, lung and neurological diseases.

    Palliative care also has a mission in the public domain to discuss how to offer the society care in dying based on dignity, appropriate symptom control, and appropriate psychosocial and spiritual support. If society and medicine do not want to address these issues, palliative care specialists and the palliative care community must do it, while also improving the standards of care at the primary and hospital care levels. We also must accept that often patients and families are not ready to talk about death and dying, even though they require palliative care.

    We must loudly and precisely explain that palliative care is much more than end-of-life care. Palliative care is taking care of the patients from the point they get a disease that is life-threatening. It should also use professional competencies to improve symptom management during life-prolonging and even curative treatment. Palliative care must also be available to facilitate and assume more responsibility when death approaches, facilitating transitions in goals of care.

    In order to reach these goals, there is no need to change neither the names of the units nor the very important name “palliative care.”

    In addition to this wider agenda, the damage of changing a name is also clinical. Supportive care is a confusing terminology that can be used to increase professional segmentation of care and gate keeping, to invent new specialists, to serve individual interest and to inflate costs. The euphemistic content of the word “supportive” already proved, in my experience, to be an obstacle in providing appropriate palliative care, jeopardizing open sincere communication with patients and families, timely referral to palliative care services and, more importantly, the chance to improve patients’ quality of life.

    An inappropriate focus on an artificial distinction between supportive care and palliative care, far from improving clinical integration, results in relegating palliative care to the last days of life — that is to a subsequent final phase after supportive care — and increasing the stigma attributed to palliative care. The Temel series of articles from the randomized trial on early palliative care referral plus standard oncology care vs. standard care alone proved that it is possible to obtain clinical advantages from the collaboration between palliative care and oncology, and this is a change occurring in the realm of evidence based medicine, without any change in names.

    Recently, a colleague from Lucca, in Tuscany, suggested an official name change for morphine in an effort to overcome the problem of opiophobia. He did not succeed.

    I do not know if my friends will have more fortune with palliative care, but I know that today the term “supportive care” is not universally helping many patients who need palliative care, sadly and ironically against the very scope of some of those advocating it for the best.

    For more information:

    • European Association for Palliative Care. White paper on standards and norms for hospice and palliative care in Europe: Part 1 — Recommendations from the European Association for Palliative Care. Eur J Pall Care. 2009;16:278-289.
    • Clark D. Transforming the culture of dying. The work of the Project on death in America. New York: Oxford University Press. 2013.
    • Temel JS. N Engl J Med. 2010;363:733-742.
    • Simini B. Pain. 1995;62:251.
    • Augusto Caraceni, MD
    • Director of palliative care pain therapy and rehabilitation, Fondazione IRCCS Istituto Nazionale dei Tumori
      Member, European Palliative Care Research Center
      Professor, Norwegian University of Science and Technology
      Vice president, European Association for Palliative Care Research Network
  • Disclosures: Caraceni reports no relevant financial disclosures.