The definition of value by patients with cancer does not necessarily coincide with other definitions by other stakeholders. According to one breast cancer advocate, when patients are asked to define “value” in the context of their cancer treatment, cost is not the first thing that comes to mind.
“If you push patients to share [their thoughts] about value in the context of cancer treatment, they invariably refer to communication and the relationship with the doctor as being paramount,” said Beverly E. Canin, Vice President of Breast Cancer Options, Kingston, NY, at the 2015 American Society of Clinical Oncology annual meeting.
Value Survey Results
These anecdotal observations are supported by a 2015 survey conducted by the Cancer Support Community. The survey asked 769 patients with metastatic breast cancer, “When considering your cancer experience, how do you define value?” The patients could select answers from 3 “value code categories”:
- Personal—existential, practical, relational; preference; guiding principle
- Exchange—health-specific, economic
- Other—no response, unclear, lack of understanding, no value.
“Value is something positive a person gains from an organization or another person and should always exceed any dollar amount paid,” said one patient surveyed.
“Value is best measured in emotional terms, what your care team and your supporters bring to your journey. It’s doctors, nurses, and other healthcare professionals going beyond the science to reach out and touch you as a human being. Feeling that happening is worth much, much more than its weight in gold,” said another patient.
As Ms Canin reminded the audience, research shows that doctors tend to interrupt their patients within 30 seconds after patients start talking.
“George Bernard Shaw said, ‘The problem with communication is the illusion that it has occurred,’” she said, suggesting that this is indicative of the usual dialogue in the doctor’s office. “There is this illusion that we’re communicating.”
Another survey of patients with metastatic breast cancer provides insight into these gaps in communication, as well as stresses on the oncology team and patient caregivers. The researchers polled 359 women with advanced breast cancer, as well as 252 licensed oncologists and 234 caregivers (Harris Poll for Novartis, June 19, 2014-August 22, 2014). The results showed that:
- 70% of patients said that it is important for their doctor to refer them to support services at the time of their initial diagnosis of advanced breast cancer
- Only 36% reported that this was something that their doctor did
- 92% of patients said that it is important for their doctors to discuss long-term treatment goals (eg, managing pain, keeping their hair for as long as possible, seeing a wedding or a birth of a grandchild)
- 53% reported that this was something done at their diagnosis
- 42% of oncologists said that treating patients with advanced breast cancer has a significant negative impact on them
- 94% of caregivers said they try to maintain a positive outlook
- 75% agreed that their caring role has been an emotional burden.
“I would argue that we stand to learn from this survey,” said Ms Canin, “because these patients have ongoing and lifetime relationships with their oncologists and treatment teams, which should be an ideal setting for developing relationships and trust.”
Although medical schools are including communication with patients in the curriculum, most, she feels, are “probably not able to spend adequate time on the subject.”
“We all know that physicians are not paid for time talking to patients,” Ms Canin said. “The discomfort of the current situation is palpable on all sides.”
Admitting that patients undoubtedly care about the escalating costs of treatments, she believes that such concerns are of lesser priority in the context of the clinic.
“When we [patients] are in your office or clinic in treatment, we care the most about our relationships and trust with you, our doctors….I speak of ‘we,’ but we patients are not some all-inclusive single entity. The ‘we’ is a collective of individuals who must be seen, communicated with, and treated as individuals,” Ms Canin concluded.