Patient centered care, i.e. putting the patient at the center of his or her care. I think about this a lot. What does it really mean? What is the disconnect? Is it achievable? How do we prepare patients and their families? How do we prepare health care professionals?
I have been thinking about this more due to our recent release of pivotal information from the Cancer Experience Registry. The October 22 release of Elevating the Patient Voice looks at the cancer experience through the lens of 3,500 patients with striking results.
But first, is this issue. There is no doubt that we all are thinking about the patient and their families and, in that sense, placing them at the center of care. As a community, we talk to and about them, make decisions that impact them and even try to predict how they will feel. As I recently heard a physician say, “It is our duty to protect our patients.” Now, please do not misinterpret my thinking. I am thrilled that we are protective of our patients, as many are in the most vulnerable state of their lives. But in protecting patients rather than engaging patients, we may be compounding that vulnerability and moving patients from the center of care to hanging on to the caboose of a very rapidly moving train.
As one example, the Registry data shows that up to 65 percent of patients report feeling unprepared to make a treatment decision. 65 percent— that’s 2 out of every 3 patients. Of the 4,563 people who will receive a cancer diagnosis today, up to 2,965 will not be prepared to make a treatment decision. Yet, these same patients have to live with the outcomes of their care. Some are very positive and may result in better patient outcomes, including being cured. Some however, are not so positive and can exist with the patient and family for years to come. Patients in the Registry report missing social events (48%), depleting their savings (36%) and altering grocery expenses (37%) to pay for their care. They report short and long-term side effects that include up to 70% reporting significant levels of fatigue. And, they report impact to their ability to work (46%). Patients are living with the consequences of their cancer care and they deserve to have more of an understanding and voice in the process.
The good news is that when engaged, even in a one-time treatment decision counseling session, patients report being more satisfied with the interaction with their health care professional and report lower levels of decisional regret. And, as one physician reported, “they bring me better questions, not more questions.”
The Institute of Medicine report (Ensuring Quality Cancer Care) was published in 1999 and noted engaging patients as a key element in quality cancer care. 15 years ago. Since 1999, much as been done to advance this goal of engaging patients. Three more IOM reports, the 2012 Commission on Cancer Patient-Centered Standards, the American Society of Clinical Oncology Quality Oncology Practice Initiative, the oncology Medical Home models and others are trying. But how can we get there quicker and with more accuracy? Engage patients.
While it sounds simple to implement, it is not. Imagine a world where patients sit face-to-face with a care provider who has time to and is reimbursed for arriving at a care decision with the full understanding of the patient. Imagine a world where advisory panels that make major decisions on behalf of patients actually have people living with the disease informing their thinking. Imagine what could be accomplished in clinical research if patients were aware of their options. Imagine the result of shared-decision making and care planning from the point of diagnosis on overall patient outcomes, including patient dignity.
This level of engagement is within our reach. Now let’s all get busy, we’ve got important work to do.