Palliative Care Is More Than End-Of-Life Care

FT. LAUDERDALE, Fla—Palliative care, broadly defined, can benefit cancer patients who are newly diagnosed and who are in active treatment, as well as those who are near death. In creating guidelines for palliative care, the National Comprehensive Cancer Network (NCCN) Palliative Care Panel members found agreement on this point.

“We didn’t want this just to be end-of-life care,” said Michael Levy, MD, PhD, chair of the NCCN Palliative Care Panel. Dr. Levy is medical director, Palliative Care Service, Fox Chase Cancer Center, and assistant professor of medicine, Temple University.

The NCCN panel defined palliative care as “comprehensive, interdisciplinary care that maximizes patient and family quality of life throughout the continuum of cancer.”

In this model, elements of palliative care, especially symptom control and psychosocial support, are expected to overlap with curative treatment. When the risks of curative therapy outweigh the benefits, palliative care becomes the primary mode of continuing care. Palliative care continues after the patient’s death to include bereavement support for family members.

The panel is in the process of creating the first NCCN treatment guidelines for palliative care. Once it completes its task, the panel would like to see the palliative care guidelines inserted into all disease-specific guidelines. “Palliative care should be included in all the NCCN guidelines as a clear therapeutic intervention,” Dr. Levy said.

Dr. Levy, Susan Block, MD, chief of Adult Psychosocial Oncology, Dana-Farber Cancer Institute, and Michael A. Carducci, MD, co-chair of the Palliative Care Task Force at Johns Hopkins, reported on the panel’s progress at the NCCN’s Fifth Annual Conference.

Practical Steps

The proposed NCCN guidelines will offer practical steps for implementing palliative therapy throughout the course of treatment for a cancer patient. Special emphasis will be placed on the management of a patient’s final hours. This section will include relief measures that often are not found in other guidelines, such as the intentional use of sedation for the relief of refractory symptoms in the imminently dying, Dr. Levy said.

Physicians will also be given suggestions for dealing with requests for hastened death, which are often expressions of depression.

Physician-assisted suicide, recently legalized in Oregon, will not be addressed in the guidelines, however. “The first level of intervention really needs to be access to excellent palliative care for all patients throughout our country before we can get to the next level of discussion about the appropriateness and ethical issues involved in assisted suicide and euthanasia,” Dr. Block said in response to a question from the audience.

This kind of comprehensive approach presents challenges to writing guidelines, panel members acknowledged. At times it even seems resistant to the classic NCCN format, which begins with screening and assessment and proceeds along step-by-step decision trees.

One of the more difficult decisions facing the palliative care panel was determining at what point in the course of treatment should oncologists begin screening patients for palliative care. “When do you pick up the palliative care guideline?” Dr. Levy asked.

Two possible points for when to recommend palliative care screening are under consideration. One possible entry point is when a patient is expected to live only another 12 months or less. The other point is whenever the patient faces a high expectation of cancer-related death, even if that death is years away.

Panel members seemed to express their support for the second approach. “Ongoing discussions about fears of death and dying need to be woven into ongoing practice and not just take place in the context of DNR [do not resuscitate] discussions or withholding/withdrawing treatment discussions with patients and families,” Dr. Block said.

Dr. Levy added: “On average, 50% of the patients who have cancer in this country are cured of their disease. But if we focus on the subset of patients who get combined-modality therapy for advanced disease, in fact the intent to cure is only 15%, and the cure rate, the long-term remission rate, is about 7.5%. So really, more than 90% of the patients that the average cancer center sees in active anticancer disease therapy have a high expectation of cancer-related death.” The panel said it welcomed written comments from the audience regarding this issue.

Oncologists can attend to palliative care issues early in their treatment of a cancer patient by determining the patient’s likelihood of death from cancer, determining the patient’s life goals, and considering how further treatment will affect daily living.

With this knowledge of the individual patient, clinicians can develop a palliative care plan. Such a plan is necessary, Dr. Carducci said, because cancer patients “will be sidetracked from taking care of end-of-life issues if we are always focusing on the treatment of their disease.”

Reflections at the End of Life

Good palliative care addresses the psychosocial and spiritual needs of patients as well as their physical needs, Dr. Block said. When death is near, many patients wish to reflect upon their lives and attend to any unfinished emotional business. In addition to saying good-bye to friends and family, patients may wish to repair troubled relationships and create a legacy for those left behind.

Although not every patient undertakes this process, known as “life closure,” good palliative care should be prepared to help those patients who do, she said.

So what is the oncologist’s role? Dr. Block acknowledged that facilitating life closure “doesn’t sound very oncologic,” but the panel felt it was an important issue.

“Life closure provides a positive focus for the patient with advanced illness and the family, and can be an antidote to hopelessness, both for the patient and the clinician,” Dr. Block said. “It allows patients to create meaning. They retain a sense of purpose in the face of progressive disease if they have things to do and tasks to accomplish.”

Oncologists can help with life closure by focusing on the patient’s goals for the time they have left and managing physical and psychological symptoms to optimize their quality of life. Since home is usually the best place to accomplish life closure goals, the oncologist can help by enabling the patient to remain at home, if that is desired, Dr. Block said.

“Excellence in providing care to these very complex and ill patients really requires an interdisciplinary team,” Dr. Block said. “We are not expecting you as oncologists to do it alone.” An interdisciplinary team that includes a social worker, chaplain, psychiatrist, and nurse as well as an oncologist, is going to be able to best address all the needs of the patient and family, she said.

Panel members agreed that more studies need to be done in the area of palliative medicine and that research has been hampered by the difficulties of measuring outcomes of palliative care. “Because of the lack of evidence so far, this is a really important area for clinical research,” Dr. Carducci said. “I think it is going to be quite rewarding.”