By Sara Reid, Consumer Board Member, Boston Healthcare for the Homeless
Lived Experience Vice Chair, complex care core competencies working group
Content note: brief discussion of suicidal ideation
I often wonder: Why should we think, talk, and write more about what is already obvious to those of us who are connected with and providing healthcare support to individuals with complex needs?
The simple answer is that as a field of complex care, we still have a lot of work to do to both develop best practices and share those best practices so that individuals with complex health and social needs can receive the high standard of care that they deserve.
As the Lived Experience Vice Chair of the core competencies working group, which is working to develop core competencies for the field of complex care, I have translated the lessons and understanding I gained through my personal and professional experiences into knowledge, skills, and attitudes for frontline providers across the field. I have also led the group in telling stories of complex health and social situations in which we ground all of our work.
The power of being believed
Here’s a story from my life that illustrates what complex health and social needs can look like, and the transformative power of compassionate, person-centered care:
In 2007 I went for help from a social worker friend of mine. I had met her twice previously and had been invited to “talk things through” with her at her office. She has a larger than life personality that energizes a whole room when she arrives. She also is one of the most beautiful Trans Women I ever met. I told her I didn’t want to go halfway. “I want to be like you,” I said. So I asked her for support, help, advice, and an HIV test.
I told her about my low wage job, the 6 years of reparative therapy I underwent to save my marriage for my two young children’s sake, and the ensuing homelessness, financial debt, and criminal contempt papers for money that I had already paid. I explained the barriers to psychologically and emotionally rebuilding my life. I had experienced decades of breakdown since my teen years over the knowledge that I was a woman and that declaring myself would be considered a heinous perversion in my church, college, and family. I had been expelled from my family and from graduate school.
I told her all of this, that I needed to transition to survive, that I could only rebuild a genuine life rather than going through the motions of others expectations. I had already made my decision, had publicly come out but didn’t know how to succeed. I was deeply depressed, sometimes suicidal, marginally housed, and cut of from my beloved son and daughter. The icing on the cake was that I had near zero take home pay despite working 40-60 hours per week. When at my lowest, and seriously planning suicide, I chose to stay only for my kids. I couldn’t even look her in the eyes at that point. What she said after all that got me to where I am today.
“I believe you!”
After a long pause, she said that any one of those things is tough, but that kind of mess is way too typical for us. She connected me with Boston Healthcare For The Homeless’s brand new Transgender Health program and a wonderful nurse.
Today I have made it all the way through transition with hope, laughter, kids, and four grandkids. After a second round of homelessness, I finally have a nice apartment. I have done peer support and advocacy for the community, including speaking several times to mayors and governors.
Eight principles for complex care providers
Having been both a peer and provider of services over the past decade for a remarkable collection of people who have extreme and complicated challenges to survival, I know both how dire the needs are felt by the patient and how reluctant the medical tradition can be to delve into this murky world of the hurting. But care provision is as simple as using those very skills that made us compassionate humans in the first place.
Here is a collection of the principles of complex care, based on my personal and professional experiences, that I use as guides in my work as a vice chair of the core competencies working group as well as in my own work and life.
- Listen first, listen second, and listen third. Use what you think you know to build a friendly bridge but do not be too committed to the notion that you have it right or are fluent in their culture and experience. In the transgender community the body of knowledge of how to survive and thrive through medical transition has until recently rested within the community. The medical community was nearly universally against what we said we needed. We had to fight every step along the way to be heard. So the principle here is to learn the culture of those you work with and understand how they see their care and what is most important to them.
- Believe the patient’s stories. See my story above. My path to success was only possible because someone heard and believed me. It made all the difference in the world.
- Trust. In healthier populations, trust is typically assumed. Those experiencing complex needs typically have significant trauma prior to meeting you, so work ALWAYS with a mind to build trust and increased openness for the long-term care of the person.
- Teach and empower. The person seeking care is in charge of their health and of creating their own support and care support team. They will benefit most by not seeing their providers as gatekeepers or aloof nameless and faceless permission-givers. Complex care works best when the patient sees themselves as the boss of their own health and happiness and their providers as their employees.
- Follow up. Patients with complex needs require a team of professionals who can comfortably give referrals while following up on care progress. Don’t refer a complex patient out like a hot potato. Many get the run around until they give up. But at the same time, be ready to seek appropriate care for needs that require specialists. A warm handoff followed by a follow-up appointment creates reassurance and continuity, especially for those with fear or damaged trust. They need a consistent and committed team.
- Ask questions about unfamiliar areas. See point one: if you don’t know, ask! For example, some providers react to gender diversity with confusion and discomfort, which shuts off the potential for building strong relationships with patients. Check your assumptions: your patients may have histories, experiences, and even organs that are different than what you expect just from looking at them, and asking relevant and nonjudgmental questions has a direct impact on diagnosis and care options.
- Recognize that the patient’s goals may be far from what you recommend. Meet them where they are at, provide as many options as possible, and over time capitalize on shifting priorities. Celebrate accomplishments and see setbacks as part of the process of getting healthy, or at least staying alive.
- Keep good relations with the surrounding communities. Those with complex needs feel better when they have a valued place in their greater communities. So do medical professionals. This is valuable. Take time to teach and network and open source knowledge. Seek and share information and best practices.
These are a few of the principles I have learned working with those locked out of traditional medical and social care and with established and committed providers, and they guided my contributions to our core competencies working group. Please take a moment to look at our drafted complex care core competencies and let us know what you think. What perspectives are we missing?
I would like to close this with an invitation to enthusiastically embrace the complexity of those who entrust themselves to us for some vital part of their well-being. You can do this!