A study appearing in the New England Journal of Medicine finds many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to cure them, raising questions about whether they are receiving adequate information from their doctors when making treatment choices.
For their study, researchers led by Jane C. Weeks at Dana–Farber Cancer Institute studied 1193 patients who had received chemotherapy for newly diagnosed metastatic (stage IV) lung or colorectal cancer. Both diseases have a poor prognosis, with 1% and 5%, respectively, alive five years after diagnosis. Chemotherapy can offer relief of symptoms and even extend life, but does not help make a cure possible.
Despite that, some seven out of ten patients with lung cancer and eight out of ten with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer. Interestingly, patients who reported more favorable communication with their physician were more likely to report inaccurate beliefs.
The authors conclude that this gap could be compromising patients’ ability to make informed treatment decisions that are consistent with their own preferences. They say while there’s an extensive body of research on how physicians can effectively and compassionately engage patients with terminal illness in discussions of end-of-life care, there is far less literature about how to help patients recognize when treatment is not curative. We asked Rebecca Kirch, director, quality of life & survivorship for her thoughts on the study.
Why did we need this study?
“Prompting clinical conversations about quality of life priorities is particularly important in the context of cancer because the toxicities of treatments are significant and have lasting consequences.
“Before this study, we knew that cancer patients’ conversations with doctors often focused exclusively on explaining treatment and chemotherapy plans, without talking with patients and families about what is important to them or about what they are hoping for.
“A recent poll of 1000 people with a history of cancer done by the American Cancer Society Cancer Action Network (ACS CAN) revealed that fewer than one-third were asked by their health care team about what was important to them in terms of their quality of life before cancer treatment began. But those conversations are essential for patients and families to make treatment decisions that align with their personal goals and priorities for the quality of life they want to be living.
“Because of this gap, adults and children living with cancer often experience inadequately treated symptoms, as well as life-threatening or limiting side effects and late effects that last a lifetime, all of which cause enormous strains on family caregivers as well.”
What does the current study add to our knowledge?
“This study confirms the importance of emphasizing clinical communication skills development in medical school training and the need to refresh communication skills during mid-career. Doctors need to know and use the right words to help patients and families get the care they need — including care to help control their pain, symptoms and distress and preserve their quality of life.
“It also reinforces the opportunity right now for using palliative care skills to help patients and families understand what is possible and what is not possible from treatment. Studies have shown that patients’ understanding of prognosis and providing palliative care hand in hand with cancer treatment may even improve survival.
“But patients and families don’t know what they don’t know. We have to ensure that these issues are brought up so patients can choose and receive the care they need. Our consumer research showed that while patients and families are not knowledgeable about palliative care, the large majority of them would want it once they understand it using their own words.
How should this affect future practice?
“This study and editorial reinforce the importance of overcoming palliative care’s identity problem so that patients and families understand its role in optimizing quality of life and survival — delivering the care that people want and need. Similarly, both the study and editorial also reinforce the importance for oncology professionals to use palliative care’s emphasis on identifying and supporting patient and family goals and quality of life during and after treatment as essential aspects of quality cancer care.
What do we still need to answer?
“In a 2010 poll of cancer center directors reported in the Journal of the American Medical Association by Hui et al., 90% of the responding oncology leaders agreed that stronger integration of palliative care services into oncology practice would benefit patients in their institutions. We have made significant progress toward that integration over the last decade, with palliative care in U.S. hospitals increasing for the 11th consecutive year — a steady 148.5% increase from 2000 – 2010.
“Yet despite the benefits of palliative care and its recent growth, more progress is needed to ensure the millions of seriously ill people in the United States have access to palliative care from diagnosis throughout the course of illness — and in every available care setting. Availability of this care still varies considerably by region and by state. Moreover, additional research is needed to strengthen clinical practice, including communication, and to improve health care delivery that will maximize quality of life for these patients and families.”
What challenges remain about implementing what we know?
“The ultimate goal of palliative care is to improve overall quality of life and quality of care for patients experiencing serious and chronic illnesses and their families. To benefit from palliative care, however, people must be able to access these services in their local hospital or other care settings.
“In addition, health professionals in training must learn from direct experience at the bedside with high-quality palliative care teams. Policy initiatives that address workforce, research and patient access could rapidly bring palliative care to scale in the United States to meet the needs of our nation’s sickest children and growing population of seniors living with long-term chronic conditions. The Society’s advocacy affiliate, ACS CAN, is actively urging Congress to pass legislation to educate patients, families and health care professionals about palliative care, fund new research to see what works best and train doctors and nurses on how to practice palliative care.
“With greater access to palliative care, cancer patients and survivors will suffer less and be able to focus more on getting well.”
For more information, please visit the Palliative Care section at ACS CAN.