The American Cancer Society (ACS) is leading the way in an ambitious effort to demonstrate to lawmakers how the quality of life (QOL) of patients with cancer can be improved when palliative care is introduced both alongside and early on in the treatment process.
In November 2013, the ACS sponsored a series of live workshops called “Advanced Communication Skills for Difficult Situations (ACSDS)”, which aimed to provide proof-of-concept to clinical studies that concluded that palliative care should be combined with a critically ill patient’s primary treatment at a much earlier stage, and “better communication is needed between doctors and patients when doing so,” said Rebecca Kirch, Director of Quality of Life and Survivorship for the ACS in Washington, D.C. The four workshops took place in Los Angeles, Miami, Boston, and Minneapolis.
The aim of the ACSDS workshops was three-fold:
- Observe the way a team of 20 oncologists from different hospitals and geographies communicate and respond to live actors portraying terminally ill patients with cancer receiving news that their treatment has not succeeded.
- Study how the reactions of participating oncologists and live actors align with existing research that suggests that the delivery of palliative care becomes a more integral part of primary treatment.
- Improve standards-of-care guidelines and propose legislation based on the ACSDS workshop results and other data to facilitate a closer blending of palliative care and primary care.
Interestingly, the changes ACS is looking to accomplish through better integration of primary and palliative care are not targeted specifically at patients with cancer. Instead, they are targeted at improving three key factors of QOL for all seriously ill patients: palliative care, psychosocial/rehabilitative care, and overall wellness. Kirch indicated that the best place to inspect these three prongs of QOL, however, is in an oncology setting.
“If we fix palliative care for oncology, we fix it for many other serious illnesses. So our legislative agenda is not focused on cancer. It is for all serious illness, but we learn the quickest about palliative care from oncology,” she said.
There is hope that lawmakers will be persuaded to take steps to encourage or mandate a closer knitting between primary and palliative care, added Kirch. However, legislation cannot improve the way an oncologist communicates palliative care issues to a patient in the privacy of an office. To address this, findings from the workshops will also create a guide for palliative care communication.
By no fault of their own, many clinicians simply misunderstand palliative care and think of it as hospice or end-of-life, said Kirch. “So what they are missing is the whole science of palliative care that shows us that when you provide palliative care alongside treatment from the get-go, it delivers better medicine.”
The science that Kirch refers to arrived from two studies that examined barriers to giving bad news to patients and family. The 2003 article by Back et al titled, “Teaching Communication Skills to Medical Oncology Fellows”, described observational encounters, and concluded that “only approximately 5% of practicing oncologists have received formal education in basic communication tasks, such as giving bad news,” and that “oncologists commonly miss the full range of patients’ concerns and that they are also inaccurate at detecting patient distress during a clinical encounter.”1
A second study, from the National Academy of Sciences and published this year, noted that, while advancements in medicine have improved survivability for patients with cancer, the clinical, emotional, social, and financial tolls that patients must endure during protracted periods of treatment could be reduced if palliative care was a larger part of the treatment regimen. Study coauthor Patricia Ganz, MD, Professor of Health Services and Medicine at the UCLA School of Public Health, in Los Angeles, CA, summarized that “palliative care and hospice services are underutilized and usually employed much later in the course of a patient’s cancer journey than recommended.”2
Dr. Ganz’s team cited a survey of oncologists that discovered that less than 10% had formal training in breaking bad news to patients, and only 32% had the opportunity during their training to learn from other clinicians about how to do it. “Giving bad news, such as discussing a poor prognosis, recurrence, or progression, is a common clinician task. But clinicians are rarely trained to have these difficult conversations with patients,” the study reported.2 Of note is that the Ganz study used a collaborative online service called OncoTalk3,4 to develop its results, and the same service will record and present the ACSDS events through a website called VitalTalk.5
Being able to hear and see what can be [an] incredibly emotional conversations between doctors and patients will be a way to “definitively show that studies on better integration between palliative and primary care are correct,” said Kirch.
Bad News Is Hard to Deliver, and Even Harder to Hear
One of the oncologists who participated in the ACSDS workshops is Anthony Back, MD, a medical oncologist at Fred Hutchinson Cancer Research Center in Seattle, WA. With a $1.4 million grant from the National Cancer Institute, Dr. Back has studied palliative communication skills for the past 5 years. Much of his work has been to develop better ways doctors can communicate with patients.
Dr. Back is developing what he calls a “cognitive map” to help direct oncologists in the context of a conversation in order to enable patients to project their anxiety and help them with hard-to-handle emotions, such as facing death. When complete, Dr. Back’s cognitive map will give doctors tips to creating “a soft start to a complicated message,” he said.
How can a doctor’s choice of words make a difference to a person being told it may be wise to give up trying to fight a disease with conventional medicine? You adjust the patient’s focus from their illness to their life priorities, said Dr. Back. “You ask them, ‘When you look at the future, what is important to you now? How we can help you do those important things? And is chemo going to be the answer when more chemo is going to do more harm than good?’”
This type of palliative care conversation has not been taking place in a manner that gives patients an adequate, fair chance to realistically enjoy and utilize what time they have left, explained Kirch. This is part of the reason that between 65% and 80% of patients with cancer who have bad prognoses incorrectly believe that treatment might bring about a cure.5
The Truth Can Hurt
Zett-Alexandra Small lost her mother to pancreatic cancer in 2012 after a rapid 14-month decline in her mother’s health.
Ms. Small, who works as a volunteer coordinator at The University of Texas M.D. Anderson Cancer Center in Houston, TX, told ChemotherapyAdvisor.com that her mother rebelled against the notion that it was time for palliative care. She preferred to remain in denial of her impending death.
“To my mom, the term ‘palliative care’ meant that was the end. She had what I think is the typical reaction when someone hears the term palliative care—or hospice—you only think of one thing, which is, I’m dead tomorrow, versus the big picture of what there may be left to do in the time you have,” said Small.
Earlier delivery of palliative care during the brief period of her mother’s pancreatic cancer treatment would have improved her mother’s outlook during the final days of her life, said Small.
The vital element of the conversation, according to Dr. Back, should be communicating just enough to allow patients in need of palliative care to “take the ball and run” with expressions of their fears and confusion. Patient reactions to bad news will vary so drastically, however, so doctors can never plan for everything, he added.
“We’re trying to increase the vocabulary of patient care. But how do you increase the vocabulary that doctors have when a patient suddenly gets upset?” asked Dr. Back.
What typically happens—as in the case of Ms. Small’s mother—is that the doctor politely backs off and reports that the patient is in denial and not ready to hear about palliative care, said Dr. Back. “We are not saying that the oncologist needs to be a therapist; we are trying to provide better communication tools for complex subjects,” he said.
ACS has two Federal bills introduced into the House and Senate that will leverage the ACSDS workshop results and prior studies on palliative care to inspire policy changes at a level that is necessary to improve patient care, said Kirch. There are also more legislative ambitions from the ACS in effect that are focused on palliative care awareness and access, added Kirch.
“Our legislative agenda is kicking into high gear with this workshop,” noted Kirch. “Bringing in palliative care earlier in treatment has been issued as a starter step in hospitals in New England, and we’re pushing a ‘Patients Better Quality of Life’ bill to focus federal funding administered through the US Health Resources & Services Administration that could fund more activities like [the ACSDS workshop].”
“We are helping end some old habits that die hard. When we know we use the right words with our patients, they get the care they need and clinicians get what they need to deliver it,” said Kirch.
- Back AL, Arnold RM, Tulsky JA, et al. Teaching communication skills to medical oncology fellows. J Clin Oncol. 2003; 21(12): 2433-2436.
- Levit L, Balogh E, Nass S, Ganz PA. Delivering high-quality cancer care: charting a new course for a system in crisis. Institute of Medicine of the National Academies. Released September 10, 2013. http://iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx. Accessed December 3, 2013.
- OncoTalk. OncoTalk®: Improving oncologists’ communication skills. http://depts.washington.edu/oncotalk/. Accessed November 7, 2013.
- Back AL, Arnold RM, Tulsky JA, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med. 2007 Mar 12;167(5):453-60.
- VitalTalk. New talking maps for discussing prognosis, & goals of care. http://vitaltalk.blogspot.com/. Accessed December 4, 2013.