The Christmas cookies were a little saltier than normal that year, flavored with my tears.
That was the year I did my baking while my husband, acting as his father’s healthcare proxy, exchanged endless phone calls and faxes to enroll my father-in-law, Glen, in hospice care.
A couple of weeks before, Glen had fallen and spent several days in hospital. Those few days had robbed him of his mobility, and he wasn’t responding to physical therapy. The hospital notes revealed advanced congestive heart failure combined with renal failure – treating either one would exacerbate the other. Glen had been clear about his wishes, and it was quite clear to us that the time had come to act on them.
We, and my in-laws, were fortunate to have the support and loving care of a wonderful assisted living facility, an integrated gerontology practice, and a terrific hospice in Idaho. They understood shared decision making and ensured that Glen, and some time later his wife Jean, could spend their final days as they chose.
Shared decision making seems to me an incredibly important component of patient engagement. A recent post by Mitch Kaminiski relates a very similar story to mine from the perspective of the provider partnering with his patients and their families to share decision-making. The result in his case was not only a positive end-of-life experience for one patient, but trust earned from another, to say nothing of the avoidance of the trauma and expense of repeated hospitalizations. Something like one quarter of all Medicare expenditures are for care during the final year of life.
Earlier this month I had a long conversation with a team from a mental health hospital in London. We were discussing their vision for patient engagement, the particular challenges for their patient population, and the implications for patient engagement technology. One of their priorities was a shared care plan, developed with the provider team and the patient in a process they refer to as “co-production.” Similarly, Kaiser Health News ran a recent story on shared decision-making based in part of research done at Dartmouth’s Institute for Health Policy and Clinical Practice.
That same program contributed to a 2012 paper by Mulley on the misdiagnosis of patient preferences. In it, he points out the frequent mismatch between physician beliefs about what patients want, and what they actually want. For example, doctors believe that 71% of patients with breast cancer rate keeping their breast as a top priority, but the figure reported by patients is just 7%. He also cites evidence that as patients become better informed, their choices change. More importantly, he outlines an approach to shared decision making.
I believe this issue of shared decision making one is a critical one for the design of patient engagement and care management software solutions. Specifically, we need to be able to support:
- Robust proxy access to allow patients to share information with their families, whether biological or virtual.
- High-quality patient education materials appropriate to the health literacy of the patient and relevant to his or her condition.
- Patient-friendly decision aids.
- Shared care plans reflective of patient preferences and accessible to the entire professional and lay care team.
- Patient-reported preferences, outcomes, and other information. In some cases, patient preferences, whether DNR orders or a desire not to receive an intervention, may need to be as prominent in the chart as medication allergies are today.
Just as care providers are changing practice patterns to support partnership with patients, so we, as care enablers, need to accommodate partnership in our design decisions. Since we, too, are patients, we have a vested interest in the outcome!