BY PEGGY EASTMAN
BETHESDA, MD — “There is reason to think that palliative care has come of age in oncology” -- so said Jamie H. Von Roenn, MD, Professor of Medicine at Northwestern University Feinberg School of Medicine, speaking here at “The Science of Compassion: Future Directions in End-of-Life and Palliative Care” summit sponsored by the NIH’s National Institute of Nursing Research (NINR) and cosponsored by the National Center for Complementary and Alternative Medicine, National Institute on Aging, NIH Office of Rare Diseases Research, and the NIH Office of Research on Women’s Health, with the NIH Clinical Center Department of Bioethics and the Foundation for the NIH providing additional support.
Palliative care is appropriate at many stages of the cancer care continuum, added Dr. Von Roenn, who directs the Home Hospice Program at Northwestern Memorial Hospital and is a former board member of the American Society of Clinical Oncology and this year received the ASCO/ACS Award in recognition of her pioneering work in palliative medicine. The rule should be, she said, “Palliative care always, chemotherapy sometimes.”
“Research was essential to establish this field as a scientific discipline,” said keynote speaker Ira Byock, MD, Professor and Director of the Palliative Care Service at Dartmouth-Hitchcock Medical Center and the Dorothy & John J. Byrne, Jr. Distinguished Chair of Palliative Medicine. Through research, “we’re supposed to be advancing standards of care.”
One Sign: Coming AHRQ Review
One sign that end-of-life and palliative care are coming of age in oncology and other medical specialties is the fact that the federal Agency for Healthcare Research and Quality (AHRQ) announced in June that it has requested a systematic review of end-of-life and hospice care as part of its “Closing the Quality Gap: Revisiting the State of the Science” series.
That review – which will cover the lifespan – will address pain management and the variation in quality in hospice programs, and determine how well the needs of family members whose loved one is at the end of life due to cancer or another illness are being met. The AHRQ review will focus special attention on patients with advanced, metastatic, or incurable cancer.
Resistance Continues Among Some Oncologists
Dr. Von Roenn noted that while progress in providing palliative care along the spectrum of cancer care is advancing – largely due to the advances in palliative care research referred to by Dr. Byock – there continues to be resistance to the concept of palliative care among some oncologists.
“With oncologists, the cancer is their major focus,” she said. “That’s what they’ve been trained to do.” The field of clinical oncology is changing so fast – with new discoveries in molecular biology leading to targeted therapies –that it is easy for oncologists to become totally focused on more and more treatments, even when the patient’s prognosis is very poor.
For certain cases, she noted, oncologists need to say to patients early on, “This is treatable but not curable.” And, oncologists and oncology fellows need to be educated and trained to understand that “symptom assessment is just as important as following the white count.”
She added, “We’re all in silos,” and for many years palliative care was in its own silo and not integrated well into the care of cancer patients. Dr. Von Roenn credited ASCO – which supports the training of oncology fellows in palliative care – with helping to make a difference in bringing palliative care out of its silo and integrating it into cancer care.
In an interview with OT, NINR Director Patricia A. Grady, PhD, RN, FAAN, noted that the standard approach in cancer care tends to be “very aggressive and curative,” and that “it is difficult to make the transition to the last stages of life.” But, she said, in cancer and other life-threatening diseases, “when people’s wishes are honored, they would often wish for less aggressive interventions.”
Dr. Grady noted that in general patients and their families would like to participate in discussions on whether to pursue an aggressive course of therapy or not. “How much does the patient want to endure?” she asked, noting that the patient needs to have a full explanation of the risks (including side effects and potential adverse events) and benefits of a proposed treatment. These discussions would not add costs to the health care system, she stressed. Dr. Grady emphasized that palliative care “is an important area that is growing in importance,” and that it is one area “that really takes teams.”
Nurses, she noted, can excel in palliative care because “they have a great deal of background to do a good job.” The NINR strategic plan, which is now being updated, includes setting directions for end-of-life research.
Early Palliative Care
The summit showcased a number of research advances in the field of palliative care, including work by Jennifer Temel, MD, Clinical Director of Thoracic Oncology at Massachusetts General Hospital Cancer Center. Dr. Temel described a Phase II trial of 150 patients with newly diagnosed metastatic non-small cell lung cancer (NSCLC) showing that early palliative care can be successfully integrated into oncology with this patient population.
Dr. Temel noted that these advanced cancer patients have a very high symptom burden, and they and their families experience a high degree of psychological suffering. “Patients are trading off their cancer-related symptoms for chemotherapy-related symptoms,” she said.
In this study, patients received either early palliative care or standard oncology care. Those in the early palliative care group had a higher quality of life, had less depression, and fewer of them received aggressive care at the end of life.
Interestingly, those in the early palliative care group also lived longer, she said: “We need to define ‘early palliative care’ as a service model. We need to know how best to integrate palliative care in the ambulatory care setting.
“We also need to assess whether the effect of early palliative care is generalizable to other advanced cancer populations.” To that end, Dr. Temel plans to launch a new trial of early palliative care with 350 patients who have newly diagnosed incurable thoracic or non-colorectal gastrointestinal cancers.
Integrating Palliative and Critical Care
J. Randall Curtis, MD, MPH, Professor of Medicine at the University of Washington and Section Head for Pulmonary and Critical Care Medicine at Harborview Medical Center, described a program called Integrating Palliative and Critical Care (IPACC), which is designed to help patients and families make important end-of-life decisions when a loved one is in the intensive care unit.
About 20% of US deaths occur in the ICU, and about 30% to 40% of US deaths occur in hospitals, Dr. Curtis noted. “Technology is not the enemy,” he said; rather, it is the inappropriate use of technology that can lead to problems for patients at the end of life.
Dr. Curtis said his studies have shown that the higher the proportion of family speech compared with health professionals’ speech when discussing end-of-life issues, the higher the patient’s satisfaction with ICU care -- that is, the more family members could voice their concerns, the better they rated their ICU experience.
He said health professionals’ missed opportunities with families when a patient is in the ICU and at the end of life often include: listening and responding to family concerns; acknowledging and addressing family members’ emotions; and addressing the tenets of palliative care with families -- for example, reassuring them that palliative care does not mean abandonment by their physicians and other health care providers.
“Our default ought to be shared decision-making,” modifiable according to family preferences, he said. While there is room for improvement, overall “I think the resistance to palliative care that we used to see in the ICU is getting better.”
Dr. Curtis was the senior author of an NINR-funded study showing that prolonging the withdrawal of life support in the ICU improves families’ satisfaction with ICU care (Gerstel E et al; Am J Respir Crit Care Med 2008;178:798-804). In this study, Dr. Curtis and his coauthors examined the sequential life support withdrawal process of 584 patients who either died in the ICU or were within 24 hours of an ICU discharge. Family satisfaction with ICU care was higher if the life support measures used for the patient were withdrawn one at a time over a period of days, rather than withdrawing them all at once; in addition, family satisfaction was higher if extubation was carried out before death.
Speakers at the summit noted that despite advances in palliative care research, problems in providing high-quality palliative and end-of-life care persist – for example, under-funding, insurance regulations limiting the duration of hospice care, and restrictions on use of pain-relieving drugs.
In a recent study, Christine Miaskowsi, PhD, RN, FAAN, Professor in the Department of Physiological Nursing, Associate Dean for Academic Affairs, and the Sharon A. Lamb Endowed Chair in the School of Nursing at the University of California, San Francisco, found that there was a mean of 14 symptoms in advanced cancer patients with pain. Yet, “our country right now is extremely opioid-phobic,” she said. “There are restrictions on clinicians in prescribing them.”
In an interview, Dr. Miaskowski said that because there have been increases in emergency department visits and deaths due to opioids, the Food and Drug Administration and the Drug Enforcement Administration have taken the position that there is a problem. As a result, the FDA has established the Risk Evaluation and Mitigation Strategy (REMS) for opioid drugs, which requires an educational program for prescribers. But, said Dr. Miaskowski, “nobody has accounted for the fact that pain was under-treated,” and when pain is correctly treated in more patients, then the number of opioid prescriptions will certainly go up, she said.