Values based cancer care. Yes, you read that right: VALUES based, not value based.
Isn’t it about time we made the effort to define the values that patients and families expect from us when they have a diagnosis of cancer and need treatment?
That was the topic of a webinar hosted by Executives for Health Innovation featuring Amy Low (a person living with advanced colon cancer who is Managing Director, Fellowships and Nonprofit Media for the Emerson Collective), Adam Pellegrini (the CEO of Jasper Health, Inc. which is a company focused on using digital technologies to improve the journey for patients with cancer, their loved ones and their caregivers), and me (I am the Chief Medical Officer for Jasper Health). (You can view the webinar here on You Tube)
You might be surprised how little attention is paid these days to the values and expectations that patients bring to the table after a diagnosis of cancer. What is important to them about their care? What do they want from their treatment? What questions do they have? How do they get answers? How much of a role can they play in making decisions about the path of their care?
There is no one set of values that fits all sizes: the values and expectations of care may be one thing for someone who is 45 and has children in the home. They may be entirely different for someone who is 80 and otherwise in not-so-good health to begin with.
Amy was so poignant throughout our discussion in describing her illness and her journey, which has been tortuous at times and at other times more sanguine—periods of what she calls “lazy cancer” where there is evidence of persistent disease but the disease is slow growing and not requiring immediate treatment.
Core to Amy’s beliefs at the beginning of her journey was the need to get effective treatment given that her diagnosis was unexpected (she is young), the disease was spread through her body, and she had a family to care for. She brought together a team of physicians to help her and at the same time engaged actively with them as the decision process unfolded. She continues to engage with that team, and she gives them considerable credit for working with her as partners and not just clinicians prescribing the next round of treatment.
Over time, Amy’s illness came under a degree of control where less aggressive and more focused treatments could be used, such as stereotactic radiation for lesions in the lung. She participated in discussions about the possibility of taking treatment holidays—periods when aggressive treatment could be suspended and there could be time to recover and enjoy life, realizing full well that such opportunities were transitory.
More important, she didn’t let cancer define her life. She remained actively engaged in her care, however she also remained actively engaged in her life continuing her work and her responsibilities with her family.
Throughout the discussion Amy shared some thoughts about cancer care in general, such as the significant lack of information, guidance, and support about nutrition for those with cancer.
She also made a point of highlighting the problems with what I call the “battle metaphor,” namely that cancer is a fight to be won or lost depending on how hard we fight. Both Amy and I agree that equating cancer with a battle too often begs the question of what happens when the “battle” is lost, which is far too often. Does that mean someone didn’t fight hard enough? No, of course it doesn’t: cancer is a devastatingly bad disease. Framing a cancer journey as a battle may have negative and unintended consequences, as Amy and I discussed during the presentation.
And what about getting answers to questions, or for that matter even knowing what questions to ask? Amy highlighted the typical interaction between doctors and patients, where at the end of the discussion the doctor signals completion of the visit with “Do you have any more questions?” as they are moving towards the exit. Too often, Amy recounted, patients don’t know what questions to ask. After all, it is the clinicians and other health professionals who are immersed in cancer care through study and practice, so how is a patient supposed to know all the information and what has been lacking in conversations to date?
Her response to the dilemma? She asks the doctor what questions they would ask if they were sitting in the chair as a patient.
Ultimately, as the conversation reflected, cancer care should be all about the values the patient holds dear.
Those values shift over time as one goes through the cancer journey: at first, the values are completely focused on the treatment of the cancer; over time, other factors intervene, such as when one completes a successful course of treatment and is freed from the everyday focus on trying to get better.
Especially important when discussing values are what people want from their care when they don’t have a successful response to treatment, what questions they need to have answered, what can they expect, how do they prepare for the inevitable end of that journey?
Fundamental to all these issues and values are the need for our clinicians to have discussions with patients and families. People need permission from their care team to ask questions, and care teams need to have time and space to share their experience, their expertise, and the answers to those questions with their patients.
We have a health care system that is moving in the wrong direction. There is stress, distress and dysfunction at multiple levels as other outside factors impinge on the relationship between patients and their care teams, such as how many patients must be seen in a day or how many other duties must be tended to that put demands on clinicians’ time. The list goes on but lost in all of this is the opportunity and the need to assess and discuss the values of those we care for.
Not many folks are as articulate as Amy Low nor as capable at facing a life-threatening illness as she repeatedly demonstrated during our conversation. And not everyone has the expectations that she expressed during our conversation.
But that is not the point. The point is we must do better at working with our patients and families to understand their issues, their questions, and their comfort zones. Too often we don’t determine their values: we are short on time, they take too long, they come from a different culture that may be unfamiliar to us.
Values based care should be every bit as important as value-based care. Life is not all about efficiency in practice or ordering more tests or giving more intense treatments. The most important part of a care relationship has always been and should always be the needs of the person for whom we are providing care, to be certain their needs are met, that their values are respected.
As Amy so beautifully stated in an emotional moment, she came to realize that her journey will help inform the journeys of many who follow her, as does the journey of every cancer patient become part of the experience of those caring for them. Experience builds on experience, making the next decision a clinician makes a bit clearer, a bit more informed.
Let’s continue to build on those experiences to make us better. Let us commit to not only respecting value, but respecting values as well.