In Episode 14 of Butterfly Arose, I gave a surface introduction to what is called Person and Family Centered Care, or PFCC. In this episode I am going to go into more depth on this. I have been both a volunteer and an employee in PFCC programs, and I think I can provide a valuable perspective on it starting from those experiences.
I was invited to become a volunteer in the PFCC program at Kaiser Permanente in their Northwest region in 2016 after an hour and a half conversation with the then manager. I had been referred to him after a long process of attempting to have a conversation with KP about my experiences in convincing the Centers for Medicare and Medicaid Services, also known as CMS, to stop denying payment for gender affirming surgeries for transgender people. I played, as I say in my memoir, Turning Inside Out, a small but not insignificant role in CMS changing its policy.
But I still wanted to be a part of helping KP to do better in its treatment of transgender patients, so I persisted in writing to various people, and one of them referred me to the Northwest region's manager of PFCC. I had never heard of Person and Family Centered Care at the time. I told him my story and the experiences that led to my advocacy, and he explained what PFCC was and invited me to become a volunteer, which I did.
He soon moved on to become the national manager of PFCC for Kaiser Permanente, and the person who replaced him, on his recommendation, used me as one of her thought partners as she further developed the program in the Northwest. As a volunteer, I brought my experience as a writer, published poet and performance poet into the work. In addition, I learned from my own life that poor experiences in places like health care was not mostly about conscious prejudice. It was a human social reality combining many aspects, including lack of knowledge, discomfort with those who we perceive as different in significant ways, and old, inborn rules and guidelines that people continue to follow even when they aren't working well because institutional change is complicated and hard to do.
I decided, after I came out as a transgender woman, to treat people as if they were well meaning, doing the best they believed they could under the circumstances. This helped me to not react in angry ways. Rather, I would use storytelling of my own experiences and those I knew from other transgender people to invite them into a thoughtful and open-minded space. If I got a positive result, great. If not, I walked away from what looked to me like a closed door and searched for those who were at least open to listening with an open mind. I believe that both managers could see this quality in my words and actions, and this motivated them to invite me to participate in specific activities as a patient partner.
The new manager used me in three main ways.
I worked in a couple of one day meetings, telling stories about my own experiences to help staff figure out how to improve their work that would have a better chance of being acceptable to their patients. One of these was a day-long Co-Design session to reduce the time it took to get a new appointment with the dental hygienist when you could not make your appointment because of illness or another unexpected development. The outcome of the Co-Design session was system changes that reduced the waiting time from an average of 5 months to 2 months. And this year I needed to get a last-minute change and got one within 3 weeks.
I also was one of two patients on a task force to understand ways in which mental health workers could do a better job of learning about how the same treatment methods might affect people differently depending in part on their cultural backgrounds. And seeking methods to help the system do a better job of serving every patient well based on who they are.
At one of the early meetings I attended as a member of that team, someone used an acronym I'd never heard before. I raised my hand, asked what it stood for, they said what it was, and the meeting quickly moved on. In alternating Person and Family Centered Care with PFCC in this podcast, I am using an acronym. They are common in medicine, among other places, because they take less time, and in many contexts, everyone knows what they stand for. So, using them can feel like the meeting is going more smoothly.
But I was a newbie, and I didn't know, so I asked. After the meeting, one of the therapists came up to me and, in a quiet voice, thanked me for asking. "I didn't know either." she said. Perhaps she felt embarrassed to ask, worrying that she might look unknowledgeable or unprepared to her colleagues. If so, I had done her a favor. The experience reinforced things I'd learned as a mediator, facilitator and organizational change consultant. Just asking a question can be helpful to more than the person who asks the question.
The third way I was used was as a speaker at new employee orientation. In the Northwest region of Kaiser Permanente every new hospital or health care employee participated in a day long set of meetings to introduce them to the workings and culture of the organization they were joining. It was mandatory within the first two weeks of employment, and there were a series of speakers on a wide variety of subjects, one of which was Person and Family Centered Care.
The PFCC manager would go to the podium and talk about what PFCC was, including the role of patient partner volunteers. Then she would introduce me. "This is Emily Newberry, she is your patient, and this is her story," she would say. I would go to the podium and tell a story lasting less than three minutes about specific experiences I'd had and what staff had done that made my life easier. They were, of course, closely related to my experiences as a transgender woman, but were also about things, like really listening to the patient, that were common concerns of every person.
After telling the story, I would ask if anyone had any questions for me. In 90 to 95 percent of the time, there would be an uncomfortable silence. After a half minute I would say. "I sometimes worry that people don't ask any questions because they are afraid they will use the wrong word. I'm not worried you'll use the wrong word, I'm worried that you won't ask. Because if you don't ask any questions how will you know?"
In the vast majority of circumstances, hands would then go up and several questions would be asked. Some were about what it is like to be a transgender patient, but most were more general questions about the PFCC program, how it worked from the patient perspective, challenges to doing the work, and so forth. In other words, fear of being seen to be insensitive about transgender people's situations could have prevented them from learning more about the PFCC program itself. A program that is about better understanding and serving the needs of all patients.
This experience reinforced my decision not to treat people negatively, rather to be the invitation to mutual learning and understanding. This my self-discipline to use my words and body language to reduce anxiety in these interactions with the staff.
At the same time, by using me as a speaker, the PFCC manger was quietly normalizing the truth that Kaiser, like other health care companies, has patients who happen to be transgender. And that in the end we are just ordinary human beings like everyone else.
Early on while acting as a volunteer, I quietly encouraged that there be a conversation about how the organization could improve its care delivery for transgender and gender nonconforming patients. There was support from both front-line doctors and therapists, and some upper-level management folks as well. Some, in fact had been quietly doing things within their scope of work to make life easier for us. In 2017 the company started a process for designing a clinic that would be devoted specifically to meeting our needs.
At first, they organized a couple of meetings involving 6 transgender patients and a similar number of staff. The outcome of these meetings was the development of a full design team. It ended up taking a year of monthly meetings. There were about 25 patients and family members of all ages and a similar number of medical and administrative staff who participated. In early 2018 the opening of the Gender Pathways Clinic was announced and began serving patients.
At the same time, the manager of Person and Family Centered Care advocated for the creation of a patient advisory council for the clinic. These councils are widely used in hospitals and many types of specific care, like for cancer or chronic illnesses. It took a couple of years for it to become fully operational, but we succeeded.
While I did see specific system improvements that came out of my participation and that of other patient partners, I was also changed in some ways. I came into the role with the belief that everyone is trying to do their best, given their circumstances, and not with ill intentions for the most part.
My experience of working with doctors, nurses and other staff gave me a visceral sense of the sincerity they brought to the work, including specific examples of listening to us and of their determination to make changes as a result that were not always easy to accomplish.
I also came to the patient partner role with knowledge and experience in organizational change from working as a facilitator, trainer and consultant in the field. This experience gave me a renewed respect for those who work to change their organizations, and for the complexity that faces them as they attempt to do so.
Finding stories told by patients who do this work is not easy. There is a video I watched of patient partner Tiffany Christensen that was posted by the IHI or Institute for Healthcare Improvement. In it she says she was very outspoken, and this gave her a voice in letting clinical staff know what the medical care she received was like from her perspective. It also gave her an opportunity to better understand what it was like from the perspective of the doctor or nurse.
She is also very honest that there were times when she let the doctors think that she would follow a challenging care plan when she knew she would not. And that it felt to her like some doctors actually knew this might be the case but just wanted to tell her what to do and get it over with. In her experience as a patient partner, she changed. She got a better understanding of both the value and the potential for a real partnership between her and the doctor. This caused her to tell them when she could not follow the recommended care path and to have a conversation with them about what she could do instead.
Her experience resonates with mine, although I'd made my decision of how to react over problems I perceived in health care a bit earlier in my trajectory to become a patient partner. Improving health care requires a partnership between patients and their families and medical staff just as much as getting help with a specific medical problem does.
Everyone has a different perspective in any given situation, and every person sees things through their own lens. This does not mean that everything is subjective; real things happen, and there is a place for objective measurement. But the quality of relationships are just as important as the things we can measure in medicine.
I brought valuable experience to the table as a patient, experience that the doctors and nurses could not access. And they understood the medical system way better than I did. This included their own medical training and experience. It also included their day-to-day experience working within the system where I went for care.
To get closer to the truth of how the system was working and what improvements should be implemented so everyone in the system had a better experience required all of us to be in the room together. That is the way to get the most information that is relevant to finding workable solutions. And to finding what stands in the way of those solutions being implemented.
In the next episode of Butterfly Arose I will go into Person and Family Centered Care in even more detail, but this time from the perspective of the organizations who invite patients into this work.
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