Challenging Conversations: Palliative Care and Shared Decision-Making

Last week OncLive published an interesting article entitled “Opioid Epidemic Poses Complex Problem for Cancer Care,” written by my friend and renowned oncologist, Maurie Markman MD, who is President of Medicine and Science of Cancer Treatment Centers of America. In the article, which does an excellent job of stimulating discussion on the enormous challenges in opioid use today, he makes a point that stuck with me regarding palliative care:

Of course, the use of opioids in the population of patients with cancer has long been recognized to be unique, playing an often essential role in palliative and end-of-life care.

In the fast-moving world of medical oncology that we work in, we don’t often spend enough time discussing the difficult issue of palliative or end-of-life care. We focus so much on new treatment options, emerging clinical data, and miracle success stories. Earlier this month, the New York Times published an emotional piece, “Desperation Oncology’: When Patients Are Dying, Some Cancer Doctors Turn to Immunotherapy,” that spoke to the hope that many patients and doctors hold regarding new immunotherapies and what they might provide for patients who are “running out of time.” It also sparks this difficult question – when does one continue hoping for the miracle or move to palliative options?

So what exactly is palliative care? The National Cancer Institute defines it as:

“an approach to care that addresses the person as a whole, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems.”

To me, in its simplest definition, palliative care treats both the symptoms and side effects of the cancer, rather than the cancer itself. What is important in this process is that the cancer care team optimizes quality of life for the patient by managing the physical, spiritual, and psychosocial needs of the patient, family, and caregivers.  It is a collaborative approach that involves many components and care team members.

We know that there has been evidence that early integration of palliative care has been shown to provide improved outcomes, and reduced costs, in patients with advanced cancer. A few of note:

• A Cochrane review study in 2017 of 1614 participants across 7 clinical trials concluded that early palliative care interventions may have more beneficial effects on quality of life and symptom intensity among patients with advanced cancer than among those given usual/standard cancer care alone. Although we found only small effect sizes, these may be clinically relevant at an advanced disease stage with limited prognosis, at which time further decline in quality of life is very common.
• The now-famous 2010 New England Journal of Medicine paper by Jennifer S. Temel, MD from Harvard Medical School titled, “Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer,” which also concluded that among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood.
• A brief Medscape article earlier this month discussed that ‘Palliative Care Inpatient Units’ at John Hopkins saved roughly $3.5 million on health system finances in 1 year, and that other studies [such as a 2011 study in the Journal of Palliative Medicine] showed that hospice enrollment did not compromise length of survival in advanced lung cancer.

The biggest challenge in discussing palliative care is obvious – discussing it. It is very uncomfortable to talk about. A cancer diagnosis is a difficult conversation, and a cancer diagnosis with a poor prognosis is an even more difficult one. In recent years, we have made great progress in bringing these challenges to the forefront, and ASCO has done an incredible job of providing more resources for practicing clinicians to use. In 1998, ASCO published a special article, “Cancer Care at the End of Life,” that provided many recommendations for the evolution of care ([the article is very interesting to re-read if you have a Journal of Clinical Oncology subscription). As ASCO and the Journal of Clinical Oncology have evolved, they now publish Special Issues, such as the September 2017 issue of the Journal of Oncology Practice, dedicated solely to this topic. I think this is building positive momentum for clinicians and providing some great perspectives and case studies to follow.

To me, the biggest opportunity for improved outcomes and better patient care still comes back to the patient. Everything that we do in healthcare and cancer care is to improve the care of the patient. We know that the patient needs to be more involved in their care, because often times the patient has much different goals than what might be assumed. A recent OncLive article from February with Lalan Wilfong, MD from Texas Oncology discusses how more engaged and educated patients are more equipped to share in decision making when it comes to treatment options throughout the journey. He summarizes:

Ongoing conversations can help patients and their physicians understand and continually define what is important to the patient, because priorities may change. This becomes especially important in patients with advanced cancer.

This idea of shared decision making (SDM) and patient engagement is so critical in today’s healthcare that the National Quality Forum recently launched the NQP Playbook: Shared Decision Making in Healthcare to help clinicians strengthen their SDM ability. The end goal of the NQP Playbook is to:

• Educate patients in understanding their disease;
• Empower patients to establish a collaborative partnership with their healthcare providers; and
• Align treatment decisions with what matters most to patients, and respect their individual concerns, preferences, goals, and values.

In some cases that may be to continue the fight with all the tools, weapons, and tactics in the arsenal. But in some cases, it may lead to the challenging conversation of palliative care. Together, let's work to make it less-challenging.

I hope this stimulates some deep thinking and discussion. What do you think?

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Phil is an oncology/hematology expert and the President of Physicians' Education Resource, LLC (PER), a business of Michael J Hennessy Associates, Inc. Opinions and views in this article do not reflect those of PER or MJH Associates. He can be reached by LinkedIn message.