Development of a Clinically Feasible Process for Identifying Individual Health Priorities

Aanand D. Naik, MD; Lilian N. Dindo, PhD; Julia R. Van Liew, PhD; Natalie E. Hundt, PhD; Lauren Vo, MS; Kizzy Hernandez-Bigos, BA; Jessica Esterson, MPH; Mary Geda, BN, MSN, RN; Jonathan Rosen, MD; Caroline S. Blaum, MD, MS; Mary E. Tinetti, MD

Disclosures

J Am Geriatr Soc. 2018;66(10):1872-1879. 

In This Article

Results

Acceptance and Feasibility of the Patient Priorities Identification Process

Of the 69 eligible patients, 64 (93%) agreed to identify their health priorities; 64% were female, 89% white, and 59% aged 75 and older (Table 2). All 64 participants completed the process, 31 of whom completed the final or close-to-final version of the patient priorities identification process. Total time to complete the 4 steps outlined in Table 1 was 35 to 45 minutes, usually within 1 session. When the initial facilitation process occurred in the clinic immediately after a PCP visit rather than the patient's home, the time for Steps 1 through 4 was often completed in two 20–minute visits, with the second visit used to further explore tradeoffs (Step 3) and strengthen activation (Step 4). Participants provided a rich array of health outcome goals. Examples of health outcome goals identified include: "I want to continue to babysit my grandchildren each day to help my daughter while she works;" "Wants to continue to cook lunch for her son each day;" "I want to be able to drive to the gym for my Zumba and water aerobics"—current loss of feeling in feet is a barrier; "I want to continue to keep working on appliances and run my own business—hand pain makes this difficult;" "Wants to be able to have less pain in her back when walking to go hopping with her husband;" "I want to continue to visit my aunt who is on hospice;" "I want to continue to play cards with my friends once per week;" "I want to see my granddaughter born in October"—progression of his cancer is a barrier; "Would like to be able to work outside in her garden and push a wheel barrel—fatigue makes this difficult;" "I want to continue to travel to Fort Myers each year to stay with my daughter for the winter." Participants also identified care preferences and helpful and bothersome care (Table 3). Examples of helpful care identified (care preferences) included: "Triamterene helps with the swelling;" "I would do surgery to extend my life;" "Cardio rehab is helping me;" "My CPAP is helpful, I sleep about 4 hours at a time;" "Wear Depends;" "visiting nurse, she keeps all these medication changes straight;" "VA helps me with injections in my eye for my macular degeneration;" "Prednisone for my rheumatoid, it helps." Examples of difficult or bothersome care identified (care preferences) included: "I don't know if my medications are causing my muscle pain;" "Pain all the time with the chemo, I wouldn't really know if the other medications are making it worse;" "When I saw Dr. X, he lowered my amlodipine because it was increasing my swelling, but when I met with Dr. Y, he increased the amlodipine because I was feeling like something was hitting my chest when I walk;" "I get this electric shock pain in my hands, I don't know if my meds are causing this;" "Could my meds be causing my need to run and pee at night?" "I get hypoglycemic. I start to get weak and shaky. I don't know why or if I'm taking too much of something;" "Meds are too expensive, Humalog was $220.00;" "I stopped levothyroxine because it made me tired;" "I am losing weight, which concerns me, not sure if it is the meds;" "Furosemide made my stomach upset and made me just feel crappy."

Facilitator Input on Patient Priorities Identification Process

Themes from qualitative interviews with facilitators included characteristics of facilitator training and perceptions of the patient priorities identification process, including potential challenges (Table 4). Facilitators recommended having prior experience with motivational interviewing and an understanding of the complexities of patients' lives and health care; they indicated that the feedback that the development team provided during the weekly telephone calls and the prompts and troubleshooting tips from the facilitator manual were valuable and constructive. Facilitators described the process as time intensive but rewarding because it built rapport with patients and bolstered patients' investment in their care. Facilitators felt that many patients were reluctant to discuss their priorities with their PCPs and needed encouragement and coaching to do so.

Challenges and Refinements to the Patient Priorities Identification Process

The challenges and resulting modifications of the process identified through iterative review and feedback are shown in Supplementary Table S1. Refinements included simplifying the patient manuals and adding tips and scripts to the facilitator manuals to address commonly encountered barriers to helping patients identify their health priorities. Facilitators streamlined the process to make it less time intensive and more flexible to meet individual patient needs. One refinement was the addition of Step 4, with input from national leaders in patient engagement, to encourage patients to take ownership of their goals and preferences, to communicate them to their clinicians, and to participate in priority-based decision-making. At the suggestion of a participating physician and patient advocacy experts, we added a "specific ask" for patients to start the conversation with their clinicians: "If I could change one thing about my health care, it would be (fill in) so that I can (fill in)." This ask is written and provided to the patient to take to their next clinician visit to link specific care options to goals and values and provide a first step in clinical decision-making.

Facilitators worked with the development team to create a patient priority template that is integrated into the electronic health record (Supplemental Table S2). Facilitators document the patient's current functional status, values (what matters most to them), health outcome goals, and healthcare preferences ("helpful care," "difficult or bothersome care"). The template concludes with one specific ask that helps link outcome goals with care preferences and a starting point for making decisions. PCPs are alerted to the template through an electronic health record alert. Refinements to the template focused on increasingly succinct documentation of care preferences and health outcome goals, preferably in patients' own words, and structural changes to encourage its use.

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