'Bill of Rights' for Cancer Patients: 10 Principles for High-Quality Care

Kristin Jenkins

March 11, 2020

In spite of oncologists' best efforts, the divide between what they provide and what patients experience continues to limit the delivery of high-quality, patient-centered cancer care in the United States, says a group of experts.

Good intentions are not enough to close the gap, say Joseph O. Jacobson, MD, of the Dana Farber Cancer Institute and Harvard Medical School, Boston, Massachusetts, and colleagues.

"Oncologists naturally believe that the care they deliver is patient focused, a core part of their mission," they write.

"Nevertheless, many patients with cancer perceive gaps in their care experience," they continue. Patients report concerns such as "excessive waiting for appointments, for scheduled interventions to begin, and for return phone calls; a lack of coordination among their multiple clinicians; unclear answers about disease prognosis; and daunting financial challenges, frequently with little pertinent assistance."

The complete systems overhaul that is needed to shift the current state of cancer care is too big a job for oncologists to tackle on their own, they emphasize in an editorial published February 10 in JCO Clinical Practice.

To get the ball rolling, Jacobson and colleagues propose a bill of rights for patients with cancer based on 10 principles for excellence in patient-centered cancer care.

The bill of rights is intended "to open a discussion, not be a fait accompli," they emphasize.

The document was created with input from peers, cancer patients, caregivers, and survivors. The 10 principles that anchor the bill of rights cover risk reduction, diagnosis, multidisciplinary expertise, treatment, second opinion, coordinated care, communication, supportive and ancillary services, privacy, and follow-up care.

Collectively, these principles provide a "starting point for a much larger effort," the editorialists point out.

"Closing this gap will require sweeping changes in how our care is reimbursed and in how we manage our time," Jacobson and colleagues write. "It will mean retraining physicians and staff to facilitate true team-based care, and it will demand raised expectations for all cancer clinicians, including how they coordinate care and close communication loops."

In an interview, Jacobson acknowledged that the editorial "was meant to be provocative." The authors wanted to send a "clarion call" to cancer care providers telling them that a shift toward "true team-based care" requires more than good intentions, he told Medscape Medical News.

"The 10 principles can only be realized by building effective systems of care," Jacobson explained. "We owe it to our patients to have sound, reliable systems of care in place to ensure that high quality and a high-quality patient experience are achieved 100% of the time."

The 10 Principles for a Cancer Patient's Bill of Rights

A proposed bill of rights for patients with cancer is based on the following goals for patient-centric cancer care excellence:

Risk reduction

Patients have the right to be educated about opportunities to reduce cancer risk, to be screened to detect cancer early, and to be appropriately counseled on the basis of the findings and the best available evidence.

Diagnosis

Patients with suspected cancer have the right to timely access to trained subspecialists, to rapid diagnostic testing, and to accurate interpretations of their test results that are shared with all relevant clinicians.

Multidisciplinary expertise

Patients diagnosed with cancer for which treatment planning may benefit from multidisciplinary discussion have the right to receive such a service.

Treatment

Patients have the right to balanced information about treatment options that is provided in understandable language and that takes into account their priorities and values. Patients have the right to have all of their questions answered, including candid and ongoing assessment of their prognosis. Patients have the right to receive up-to-date information about, and have access to, relevant clinical trials.

Second opinion

Patients have the right to seek a second opinion at any time in their cancer course.

Coordinated care

Patients have the right to have all testing and treatments provided in a timely and coordinated manner.

Communication

Patients have the right to read communications among the people who provide their care.

Supportive and ancillary services

Patients have the right to supportive and ancillary services that address cancer-related health problems (emotional sequelae, pain, symptoms, adverse effects) and personal issues (financial management, caregiving support). Patients have the right to counseling and other services to help them transition from active treatment to follow-up care.

Privacy

Patients have the right to expect that their privacy will be safeguarded by all members of the treatment team and by ancillary staff.

Follow-up care

Patients have the right to receive a treatment summary at the end of therapy that explicitly describes how their cancer will be observed, what signs or symptoms to look for, and whom to contact as needs arise.

A 5-year pilot project launched by the Center for Medicare & Medicaid Innovation shows that it is possible to shift the current paradigm, Jacobson said.

The Oncology Care Model incentivizes oncology practices through monthly management payments and potential shared savings. Results demonstrate that this strategy has been effective for reducing hospitalization rates and improving management of end-of-life resources.

Other ways to achieve long-lasting results include enhancements to electronic health records. This could go a long way toward improving end-of-life care by initiating difficult conversations with patients with advanced cancer, Jacobson said. Helping practices build more streamlined processes could make it "easy to do the right thing," he added. Conducting regular performance audits of providers that includes feedback could also effect lasting change.

Last but not least, said Jacobson, is messaging. He pointed out that messaging is an area in which the American Society of Clinical Oncology (ASCO) could play a major role. "It is really an issue of prioritization," he noted.

"Central to our thinking is that patients should understand their rights at the time of cancer diagnosis, that oncologists are in the best position to guide their patients, and that, from an advocacy perspective, ASCO is well positioned to advance a bill of rights," he commented.

"We recommend that ASCO bring together a diverse group of stakeholders to create a draft bill of rights. The draft could then be posted for public comment, and based on the feedback, a final bill of rights would be created, published in the Journal of Clinical Oncology, and promoted at the annual meeting and on social media."

Kindness in Cancer Care

Results from an earlier study, led by a coauthor of the bill of rights, Leonard L. Berry, PhD, MBA, of Texas A&M University, College Station, has demonstrated that in high-pressure settings in which there is too much to do in too little time, compassionate care can reduce the emotional turmoil associated with cancer diagnosis and treatment. It can also potentially improve patient outcomes and prevent physician burnout.

There are six different types of kindness embedded in compassionate cancer care, Berry and colleagues say. They include deep listening, empathy, generosity, timely care, gentle honesty, and family caregiver support.

The researchers identified these elements following a review of service care at cancer facilities in the United States and Australia. In the process, they interviewed 400 patients, families, oncologists, and cancer care staff.

"Kindness can be a life vest in a sea of suffering...especially for seriously ill patients," they write in an article that was published in the Journal of Oncology Practice in 2017.

In an interview, Berry said that complex cancer care "has become so difficult that in the hustle and bustle of the day, it is easy to leave kindness at the door. We wanted to present kindness to an oncology audience not as a soft, fluffy construct but defined scientifically, which we did."

We wanted to present kindness to an oncology audience not as a soft, fluffy construct but defined scientifically. Dr Leonard Berry

Berry said he is encouraged by the "many pockets of excellence and innovation in cancer care. But if want to find some of the most humane cancer care in the world, you need look no further than pediatrics," he told Medscape Medical News.

Caring for children and families who are frightened has led pediatric oncology doctors and nurses to develop solutions that are "truly clever and kind," Berry noted. At one pediatric cancer center, for example, children were encouraged to put their teddy bear through a mock MRI machine prior to undergoing the procedure themselves. A subsequent study showed that the percentage of children who required an anesthetic prior to an MRI was markedly reduced by what Berry called "this generous act of discretionary effort."

In their article, the authors detail the six types of kindness and how they reinforce a compassionate cancer care culture.

Deep listening: Taking the time to understand the needs of patients and their families using simple, open-ended questions builds trust and respect, the researchers say. This means asking patients what they understand their prognosis to be and what concerns they have about what lies ahead.

At Brigham and Women's Hospital in Boston, Massachusetts, the researchers learned that nurses in the intensive care unit routinely ask patients, "What's the most important thing we can do for you today?"

Deep listening helps clinicians avoid "the hidden costs of not listening," the study authors point out. "Deep listening should lead to treatment plans that work better for the values of patient and the family," Berry explained. "You're more likely to get it right if you listen than if you don't."

Deep listening is also crucial for patients receiving end-of-life care. For example, through deep listening, a frail, elderly patient with advanced lung cancer was allowed to move from active treatment to therapy that improved his quality of life. The man lived for only 3 months, but in that time he was able to fulfill his lifelong dream of making a family pilgrimage to Mecca.

Empathy: Seeing things from the patient's perspective and responding to emotion without judgment is an anticipatory kindness that prevents avoidable suffering, the researchers say. "Any serious illness confers suffering, but a care team can mitigate avoidable suffering by understanding the emotion that diagnosis and treatment evoke, then injecting kindness."

For example, at the Peter MacCallum Radiation Center, in Victoria, Australia, anxious children who are anticipating cancer treatment can choose a superhero costume to wear to appointments.

Timely care: The heightened emotion that patients experience following a diagnosis of cancer can intensify a sense of urgency for immediate action. Delays in scheduling clinic appointments and treatment dates or in getting test results can fuel uncertainty and feelings of powerlessness. For parents of children with cancer, getting a treatment plan and developing a routine "greatly reduces stress and anxiety," the researchers say. "The sooner we can give them the information they need, the more they can calm down," commented one oncologist who was interviewed.

The review also showed that some cancer centers are investing in ways to improve the timeliness of care, despite the added upfront costs. Some examples include the following:

  • direct contact with an assigned patient navigator;

  • a multidisciplinary clinic day during which patients discuss their treatment plan with each care team member and schedule appointments;

  • an off-hours call center staffed by nurses with access to the patient's medical records who can answer questions, make appointments, or send a clinician to the patient's home.

Increasing the opportunities for patients to receive information through an e-learning website and appropriate cancer services via telemedicine and videoconference visits could also improve the timeliness of effective care, the researchers note.

Gentle honesty: In an interview, one oncologist remarked that patients and their doctors are overly optimistic "far too often." Patients and doctors need a healthy dose of reality to make good decisions, he explained.

When cancer is advanced and remission unlikely, clinicians should convey the truth directly using well-chosen words that guide patients towards "intrinsic hope," the study authors write. Intrinsic hope "can emerge unexpectedly after longed-for outcomes fail to materialize and focused hope fades," notes a BMJ blog on the topic, which also notes that "as opposed to outer-directed focused hope, intrinsic hope centers on subjective, personal issues."

As an example, the study authors suggest that, with pain well-managed, patients can choose to spend a good day as they want — surrounded by loving family, with a small grandchild or a pet on their lap.

Support for Family Caregivers: Studies show that family caregivers need support to provide care for a loved one and to stay healthy themselves. "If a family is well prepared to take care of a cancer patients during treatment, this helps them cope too," said Berry.

At the Johns Hopkins Kimmel Cancer Center in Washington, DC, a free, annual 3-day offsite weekend retreat for women with metastatic breast cancer and their partners provides information and resources and an opportunity to meet other patients.

Individual kindness can be equally powerful, according to Rana L. A. Awdish, a study coauthor and medical director of the pulmonary hypertension program at the Henry Ford Hospital in Detroit. She recalls how in 2008 she experienced a ruptured occult adenoma of the liver that resulted in multiorgan failure and the loss of her pregnancy. While in intensive care at Henry Ford, her husband slept at her bedside.

"Radiation technicians would gently cover him in a leaded apron when they shot my x-ray, rather than disrupt his sleep," Awdish recalls. "That silent awareness of his needs was so simple and yet meant everything to us. It meant his suffering was seen."

However, while enduring five major surgeries and multiple hospitalizations, Awdish also experienced care that seemed casual and indifferent. At times, there was a complete lack of empathy, she wrote in a 2017 article in the New England Journal of Medicine.Subsequently, she championed communications training that would allow health professionals at Henry Ford Hospital to speak to their patients more effectively and empathetically.

Kindness to Self to Prevent Burnout

In spite of clinicians' good intentions, the demands of complex clinical care along with financial and institutional stressors can act as barriers to compassionate care, Berry commented in the interview. Paradoxically, physicians who get past the barriers often succumb to "compassion fatigue."

So what can oncologists do to prevent burnout? "Oncology is an especially challenging profession," said Berry. "There is no magic bullet."

The best things that clinicians can do "all fall under the heading 'take care of yourself,' " he said, adding, "If you don't, you will slowly lose your ability to care for others."

Kindness is not only an important antidote to the stress that patients and families feel, but it also serves as a buffer between clinicians and the stressors they experience, he pointed out. Kindness can help preserve resilience when clinicians are feeling exhausted or a patient suffers a setback.

"Compassionate physicians do suffer," said Berry. "It's not easy to go into an exam room with lab results that indicate the chemo is not working and you have to tell the patient who has been waiting for 4 days that their tumor is growing."

Clinicians should work as a team to discuss difficult cases and share support offline, he suggested. Periodic peer group sessions with other clinicians — perhaps led by another oncologist, a chaplain, or a psychiatrist — will reinforce the fact that clinicians are not alone in the work they do.

Carve out time for rewarding nonclinical activities, such as teaching or tackling a research project. Working with other people, learning from them, getting a paper published, and giving a talk at a symposium are all ways to maintain equilibrium, said Berry.

Anyone with a stressful life needs to make time for regular physical exercise, and doctors are no exception. However, most doctors do not make time to exercise, Berry commented. He recommends getting outside ― even a 10-minute walk can help reset one's perspective ― as well as reflecting on the importance of one's work, or an upcoming vacation with one's family, or time spent with a grandchild. "It is such a powerful antidote to all things stressful in life," he pointed out.

The bill of rights research was not funded by any entity. Jacobson has disclosed no relevant financial relationships. Other authors' relevant financial relationships are listed on the journals' website.

J Oncol Prac. Published online on February 10, 2020. Full text

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