What are the most effective and humane ways to plan cancer treatment, and how can caregivers and patients make these decisions together? These questions have been plaguing oncology since the beginning of modern care. Although suggested answers abound, implementation has not always been successful.

This dilemma was the focus of a 2-day workshop, “Patient-centered Cancer Treatment Planning: Improving the Quality of Oncology Care,” sponsored by the National Coalition of Cancer Survivorship (NCCS) and the Institute of Medicine (IOM) National Cancer Policy Forum. The workshop was held in Washington, DC, on February 28 and March 1.

Dramatic Changes Needed

Ellen Stovall, NCCS Senior Health Policy Advisor, said in her introduction to the workshop that although comparative effectiveness research remains important, now more than ever, we need dramatic changes in the way health care is financed and provided.

Describing what it was like to be diagnosed with chronic myelogenous leukemia at age 28, Richard Boyajian, RN, Clinical Director of the Adult Survivorship Program, Dana-Farber Cancer Institute, said, “Cancer care is a two-way, poorly lit street. We need to teach both patients and caregivers how to navigate it.”

Mr. Boyajian spoke about his own allogeneic transplant and the many ways in which making decisions is difficult, not the least of which is the fact that patients often don’t hear much of what physicians tell them. “I remember nothing of the first few hours after diagnosis—and very little of the next few days,” he said.

“Evidence-based practice is critical, of course, but we really need to talk to patients about what is important to them—and what’s not—as they decide what to do.”

Standardized Surveys

Carolyn Clancy, Director of the Agency for Healthcare Research and Quality (AHRQ), said, “Not only do we do a poor job of health-care communication, but the rate of health illiteracy in this country is high. Both need to be improved.”

Every speaker at the workshop agreed and concurred with the need for long-term research about the consequences of health-care choices. “The only way to find out if care is patient-centered is to ask the patients themselves.”

To this end, AHRQ has embarked on a program called Consumer Assessment of Healthcare Providers and Systems (CAHPS) to develop a set of standardized surveys that ask patients to evaluate their experiences with health care. The surveys cover topics such as providers’ communication skills and service accessibility. They are designed to identify patients’ needs for information by means of scientific testing, data comparison, and other methods.

“CAHPS is one of our significant accomplishments, but by itself it cannot improve health literacy or the ability of providers to communicate with patients and their families. That has to be a shared effort,” said Ms. Clancy.

Difficult Discussions

Thomas J. Smith, MD, Professor of Palliative Care Research, and Medical Director of the Thomas Palliative Care Unit at Virginia Commonwealth University-Massey Cancer Center, said that only one-third of patients who began cancer care with do-not-resuscitate preferences had also discussed hospice with their physician, which he said is a missed opportunity for health-care providers and patients alike. He noted that physicians often find these discussions difficult and time-consuming. Dr. Smith pointed out that patients who have these difficult discussions live just as long (or longer), have less depression, are much more likely to use hospice and be at home, are far less likely to die in the ICU, and their caregivers fare better.

J. Russell Hoverman, MD, PhD, Vice President of Quality Programs, Texas Oncology and Medical Director of Managed Care, US Oncology, had his own take on the obstacles to optimal cancer care, grouping them into 5 general categories: delivery (right treatment, safely, in a timely fashion); coverage (including direct costs); indirect costs (lost work time, child care, travel, etc); personal issues (dignity, control, family burden, denial); and access. Of these, physician efforts to improve quality will mostly impact this first category.

Even just considering this first category, physicians have their own challenges, Dr. Hoverman said. “The average medical oncology practice is 3 to 4 physicians. Most practices are single specialty. From 2007 to 2008 alone, oncology practices suffered a 25% drop in practice income. At the same time, medical oncologists are seeing more new patients (350+) per year, and it’s difficult to communicate electronically with other specialists, laboratories, radiologists, and pathologists. Even within practices, software programs often don’t talk to each other.”

Best Practices

Speaking at the IOM/NCCS workshop, Patricia A. Ganz, MD, Director of the Division of Cancer Prevention and Control Research, UCLA Jonsson Comprehensive Cancer Center, said there is an ideal way to provide cancer care: in a multidisciplinary team whose members work in close proximity to each other, whose members review the relevant radiology and pathology from the patient, discuss findings and options with patients and family, and create a verbal and written treatment plan that is communicated to the patient and all the caregivers.

A written treatment plan was one of the central ideas of the workshop and was unanimously believed to be critical to the success of cancer care. Alas, it is usually not in evidence.

Key elements of such a plan include tissue diagnosis and stage; initial treatment and duration; expected toxicities and long-term effects; responsibility for specific aspects of care; management of psychosocial, vocational, and financial concerns; and advance directives.

Such plans are not mandated, but they should be, said Dr. Ganz. “Someone has to be ultimately accountable.”

Limited Research

Anthony Back, MD, Director, Program in Cancer Communication, Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center, said that research on treatment planning is limited because of inadequate outcome measures such as satisfaction with care, regrets about decisions, and inadequate understanding of what goes into a decision.

“Breaking bad news is part of oncology practice, but it stresses disclosure as an end rather than the beginning of a dialogue. Recent studies demonstrate the value of devising a plan, and patients want guidance, so we have to teach physicians how to do it,” he said.

“This may be a new role for them—discussing values, assumptions, quality of life—and there is little research that tells us how,” Dr. Back continued. “But we must improve communication, and we have to invite patients’ participation.” ■

Coverage of the NCCS/IOM workshop continues in the next issue of The ASCO Post, highlighting sessions that addressed theory and research in patient-centered care, difficulties underlying patient-informed decisions, and the challenge of discussions about death.

Financial Disclosure: The speakers at the NCCS/IOM workshop reported no potential conflicts of interest.