Patricia Deegan: Systems can’t care. People care

Putting the Human Back in the Human Services

Three issues how we can elevate care through human relationships to equivalent status and importance as our skills and technical proficiency?  

• Patricia Deegan, November 27, 2017

On November 10, 2017 I gave a talk at the 10th Anniversary Celebration for the Center for Practice Innovations (CPI) at Columbia University in New York City. Here are some excerpts from my talk, as well as some photos with my colleagues from OnTrack Central during the reception:

 It’s a pleasure to have this opportunity to share some thoughts with you at this celebration of the 10th Anniversary of the Center for Practice Innovations. The mission of the Center is an important one and includes “promoting the widespread use of evidence based practices in New York”. Toward this end, CPI has focused on using scalable approaches – such as a web-based learning management system and learning collaboratives - to teach evidence based, core competencies and skills to the behavioral health workforce.

This is all great stuff.  But I would argue that we also need to grapple with the question of how to pass on, not just knowledge and skills, but wisdom.  Wisdom doesn’t scale so easily. How do we teach the spirit of the work? How do we teach staff to see beyond the disease or diagnosis to the person in the context of their life?  How do we teach clinicians to shift the focus from what’s the matter? – to what matters to you? How do we teach clinicians to work in ways that reverence the dignity of those coming for care? Systems of care is an oxymoron.  Systems can’t care. People care.  How do we keep the human in the human services while also adopting the best practices science has to offer?

These are not new questions. Let’s hop in a time machine and go back 90 years to 1927. To set the context, Calvin Coolidge is president and the world is getting smaller as the first transatlantic telephone call is made between NYC and London, and Charles Lindbergh makes the first transatlantic flight between New York and Paris.  Back in Boston, Francis Peabody is addressing students at Harvard Medical School on the topic of the “Care of the Patient”.  He says:

...young graduates have been taught a great deal about the mechanism of disease, but very little about the practice of medicine – or, to put it more bluntly, they are too “scientific” and do not know how to take care of patients.

He goes on to ask:

Can the practitioner’s art be grafted on the main trunk of the fundamental sciences in such a way that there shall arise a symmetrical growth, like an expanding tree...?

Peabody then reminds us that:

...The treatment of disease may be entirely impersonal; the care of a patient must be completely personal. The significance of the intimate personal relationship between practitioner and patient cannot be too strongly emphasized, for in an extraordinarily large number of cases both diagnosis and treatment are directly dependent on it, and the failure of the practitioner to establish this relationship accounts for much of the ineffectiveness in the care of patients...

These words from 1927 echo across time and ring true today.  Evidence based practices can be executed with high fidelity by teams of highly skilled clinicians. But if these clinicians are treating diseases, then the work is impersonal and can obscure the humanity and wound the dignity of the people being served. When the work is impersonal, it dehumanizes people and this is a type of violence. It is what I call toxic help or help that hurts in the long run.

Care, on the other hand, is deeply personal because it occurs between human beings.  Care requires relationship.  Care is given, not through systems, but through human relationships. As Francis Peabody famously said, ...the secret to the care of the patient, is caring for the patient. I would paraphrase and say the secret to the care of the patient is caring for the person. 

Caring for the person means we must show up at work as fully human beings.  However this is not so easy.  I always thought the missing course in our training should be titled, “How to remain human hearted while working in the human services.”

It’s really challenging to show up every day to work and to remain human hearted as we encounter the depth, breadth and complexity of the suffering of the folks we work with.  

It’s hard to be open hearted and relate to people in pain, particularly when it’s not within our power to immediately alleviate that pain. It’s understandable that some clinicians grow hard-of-heart and approach the work in a more technical, less personal way.  But applying technically proficient service is not enough. I have had the privilege of gathering recovery narratives from people all around the world and no one has ever reported that it was the stellar technical proficiency of an evidence based practitioner that helped them recover. Instead people tell me stories like this:

I spent 5 years in a psychiatric forensic facility. It was a pretty bleak time for me. I didn't know if I would ever get out and get a life. But there was this one attendent who made a big difference to me and gave me hope. Each day he would come on the unit and he knew I loved the Boston Celtics and all things basketball. He would come into the day room and he would smile at me and pretend to do a slow motion jump shot while he said, "Danny AAAAinge" (a Celtic's player). It was real simple but it made my day. It brought me hope. It reminded me that I was a person. It reminded me there was a better life outside the walls. It was easy and friendly and felt real. And it wasn't therapy or anything. It felt good to connect and laugh and know those good things were still waiting for me on the outside.  

Of course, I’m not saying that skills are not important. Skills are necessary but not sufficient for the work of caring for people. Showing up at work with our hearts open, prepared to work from the common ground of our shared humanity, is also necessary to support people in their healing and recovery. 

So I ask again, how do we support members of the behavioral health workforce in becoming bold and brave and daring enough to remain human hearted when working in these human services? How do we elevate care through human relationships to equivalent status and importance as our skills and technical proficiency?  I don’t have the whole answer but I do have three good starting points. 

The first is to focus on building tools that are embedded in the care pathway, that amplify the voice and humanity of people using services. In day-to-day clinical work, there is a lot of noise and it can be hard to pick up on the signal that really matters which, of course is the voice, the values, the preferences of the individual using services. There are competing demands and tasks vying for clinicians’ attention. For instance, Will Torrey at Dartmouth sites 17 routine tasks that must be attended to during a routine psychiatric medication consult. Amidst all that noise, the signal, the voice of the individual, can get lost. In the end, the encounter can become impersonal as the relationship suffers and care is diminished. 

But what if we flipped the script? What if, instead of asking how can we get clinicians to be more fully relational and more person centered in their work, what if we flipped the script and asked “How can we harness the power of individuals in services to drive more person centered, relational care?”  In my opinion, there is a vast and valuable human resource sitting in our waiting rooms and the power of these service users goes largely untapped. If given the tools and the support, could folks help drive more person centered, relational care?

This is the question I have been focusing on for the past 15 years. In my small company we build tools that amplify the voice and the humanity of people in services. Here’s one of my favorite examples of our work. 

We call them Power Statements.  A Power Statement is a written self-advocacy statement that can be used with psychiatric care providers, therapists, case managers, primary care providers, etc.  A Power Statement does three things: First, it introduces me to my practitioner as a person, not a patient.  Secondly, it says how I want treatment to help me. And finally, it invites my practitioner to work with me to find the treatment that will help me reach my goal.  So here’s an example:

I love to skateboard and I’m really good at it. When I’m depressed, I don’t have much energy and I don’t do hardly anything. I want you to work with me in therapy so I get over this depression and can get back to skateboarding again.

Here’s another one:

Being a great mom to new baby is the most important thing to me. I breast feed my baby and that makes me a good mom too. I want you to help me find a medicine that will help me focus on my baby, not my voices. The medicine has to let me breast feed and it can’t make me too sleepy cause I have to wake up to do feedings at night.

Here’s a final one:

I am proud of myself, especially for defeating alcoholism. I have come a long way in my life (really progressed) and want to continue to do better. Work with me to find a medicine to help me concentrate, focus, ignore voices, and manage my anger so I can work at my job, stay out the hospital, enjoy family or friends, and do my chores around the house.

Power Statements present clinicians with an N-of-1 study and if treatment outcomes don’t include a return to skateboarding, then treatment has not been successful. These self-advocacy statements are powerful because they amplify the voice and the humanity of individuals. They help the clinician get the focus off of “What’s the matter” and to focus instead on “What matters to you.” Power Statements acts like a compass, guiding the entire care team and creating common ground and a shared vision of how treatment is supposed to help. Power Statements cut through all the competing noise and send out a strong signal that reaches the head and the heart of practitioners. Practitioners are moved by Power Statements and, as one psychiatrist said:

“Power Statements are really important because they rapidly summarize the patient. They rapidly present specific, powerful, self-worded representations of self. The self-worded part of it is like an automatic trigger for the patient. (When read aloud) suddenly the patient says, ‘Yeah, that’s me. That’s exactly what I want to do. Doctor you really get me.’ And remember, this is happening on day one, not a year after I’ve known the patient.”  

Power Statements scale pretty easily too.  We have tens of thousands of people using them across the U.S.  Typically, the care pathway is re-engineered so that peer specialists routinely help folks create Power Statements using a template that also includes a fidelity scale that allows folks to ensure their statements are truly powerful. People take a copy of their Power Statement into the appointment and read it, or hand it to the practitioner to read. We find that practitioners interact with Power Statements. For instance we surveyed over 1500 people at 16 mental health centers at 6, 18 and 36 months. When asked if prescribers addressed the individual’s Power Statement over 80% of respondents replied “Yes”. 

So Power Statements are an example of my first suggestion for how we might flip the script and create novel tools and methods that empower service users to drive more person centered, relational care. What are your ideas? What other tools can CPI develop and use to ensure that evidence based practitioners are also developing personal relationships through which care is delivered?

My second suggestion is that the emerging peer workforce represents a powerful opportunity to infuse evidence based work with vitality and person-centered, relational care. To begin with, we need to hire peer specialists in full time positions and pay them a livable wage. That is an important way to convey how we value and respect the work they do.  Secondly – and I know that some of us are working on this now – it’s imperative to develop the infrastructure, support and guidelines for peer work that safeguards their unique role.  Peer supporters are not mini-clinicians, but left unsupported, many drift away from the peer role and get assimilated into the dominant clinical culture. Drift is evident when peer staff begin talking like clinical staff and use words like decompensate, low functioning, etc. Drift away from the peer role is evident when peers begin attributing motives to peers: “Joe has sabotaged his job placement again.” In any case, Sascha DuBrul is leading a great effort on this front and I look forward to great advances in the coming months and years.

The third idea I have for ensuring that the behavioral health workforce provide truly human services is to create opportunities for clinicians to discover and share with each other the “why” of doing the work.  My experience is that we are called to this work for very personal reasons that we rarely share with each other.  We can work side by side with each other for years and never share what calls us to the work.  I am reminded of Atul Gawande’s surgical checklist and how the simple step of surgical team members introducing themselves to each other prior to operating, helped to significantly improve safety and reduce errors. Simply communicating with team members on a human level had what Gawande called and “activating” effect on teams. It helped them bond and humanize their work space. I’m suggesting something similar. Discovering the story of why we do this work is a key to keeping the human in the human services.

Whether a peer, a clinician or a person with a diagnosis, we all know something about what it means to get knocked down by life.  Maybe you grew up in poverty. Maybe you lived through bullying, or violence, or abuse, or addiction or being unloved or devalued. Maybe you or a loved one had an unexpected or life changing illness. No matter what it was, everyone in this room has survived something that might have taken us down. Each one of us in this room has made a passage. We couldn’t jump over it. We couldn’t run away from it. We couldn’t tunnel under it. Instead we passed through it. We passed through what might have destroyed us and we came out the other side and were different. We were transformed by it. And it is this personal experience of passing through suffering to the other side – this is the ground of our hope and the depth of our humanity. The hope we bear is the greatest and most enduring gift we have to share with those we work with.  We don’t have to tell our whole story. Folks can feel the hope we carry. Hope is what allows us to come to work each day. There are easier ways to make a living but a desire to help, born of our hope – that’s what keeps us coming back to do what can be very, very difficult work. 

So, why do YOU do this work? What has called you, personally, to this work?  Why are you here? Why are you working in behavioral health? If you can answer these questions, it’s like having personal well of life giving water and energy with you all the time.  Return to your why, your purpose at work when you are tired, or overwhelmed, or angry or just plain old worn-out. Share your story-of-why with your colleagues and co-workers. It helps teams develop deep bonds of mutual respect and helps to humanize our places of work which in turn, reminds us that the secret to the care of the patient, is caring for the person.