A general practitioner from the neighborhood near the tower, Ahmed Kazmi, wrote this on the British Medical Journal Blog to describe his visit to an already well-staffed community center:
As a doctor I felt slightly redundant. The centres were very well staffed as so many doctors and nurses had volunteered. I sat down on the floor and played with some children. I didn’t use my stethoscope those hours I was at the centre, but I still feel I was a doctor. I think that sometimes empathy and witnessing someone’s grief are as important a part of our role as procedures or prescribing.
He also noted:
. . . A group of young black Muslim boys, who were fasting themselves, walked around with jumbo pizzas offering everyone slices. A group of ladies arrived to offer face painting for the children. . . It was striking how all of the usual prejudices or divisions, which so frequently surface, were all suspended. People from all walks of life were empathetic and loving to each other. For a period at least people stopped being black, white, Muslim etc and were just “human.” If this type of unity is possible in times of tragedy, I think it is realistic to aim for it all the time.
Sometimes presence and connection is the best, or even the only, healing. And part of partnering is developing the ability to sense the needs of the other, and find a way to help meet them. It is also not just about the individual “patient” but of the whole community and environment. Thank you Dr. Kazmi.
The new Hopkins video on the expectations of patients will be a powerful tool. As the link says:
Patients and families from our six Family Advisory Councils were asked a basic question: What is important to you during your health care experience? What do you wish the health care team knew? Each council created a wish list, all with many of the same common themes. Respect, communication, and partnership. These wishes embody the building blocks of patient and family centered care and they serve as a daily reminder to ask ourselves as providers, are we meeting these simple needs to show we care?
As an Oncology Council member who was somewhat involved in the drafting of the list, it really struck me how simple, but massive, the patient “asks” are. Respect, communication, and partnership. Of course, the process of gathering these ideas was itself an important clarifying project.
It is my understanding that the video had been primarily conceptualized as a tool to educate doctors and staff. I would add that, perhaps with some additional framing, it could have great use as a patient-education tool, with the goal of raising expectations among patients. Such framing might start and end with the hospital making commitments to, and and asking for help from patients to achieve, those commitments, including of course, being explicit when the goals are not met.
We certainly spend time in waiting rooms, when we might be watching videos such as this. Moreover, as more of the appointment notification and reminder system moves online, why not include links to video like this — ideally with mention of specific steps that patients with improvement ideas might take.
As we start to think about reaching out to the public to educate and engage them in the transformation taking place in the involvement of patients and families in medical care, it is becoming more and more important to explore the different phrases that will best catch what we are trying to do, and that also resonate with the public.
In doing so, we must remember that we will start with a public that is massively on our side about these issues, so this is about all how to have that make a difference in the institutions we are trying to change, rather than to persuade them of the value of the approach.
As part of that process, I have found myself thinking about different phrases to describe the culture we are trying to create. Without in any way disparaging any of the alternatives, I thought maybe these quick almost slogan might at least demonstrate why I like the “patient partnering” phrase.
Patient Centered — “You take care of me, trying to do what I need and want.”
Patient Engaged — “You let me talk about what I want and experience — and you listen.”
Patient Partnered — “You treat me as an equal member of the team, with each of us having different skills, knowledge and experiences, and the potential to contribute in different ways.”
It wold be very interesting to see how such phrases might fare in focus groups and polls. (Some readers might be interested in what happened when somewhat similar research and analysis was done about how to address and change public views about access to the legal system, here labeled “legal aid”. Follow the link here. I will say that one of the most fascinating experiences in life was watching behind the two way mirror, with notification, of course.)
Today the National Quality Forum released its Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care. As the announcement says:
NQP’s Advanced Illness Care Action Team, which includes 25 patients, care providers, physicians, nurses, spiritual advisors, and other experts from the public and private sectors, developed the issue brief. More than two dozen individuals and organizations that are leading robust initiatives to transform advanced illness care in the United States also provided input.
It is is a very rich document, with many insights and resources. Rather than attempt to summarize it, I will instead list the lessons that I took from both the document and my participation as a patient voice in the process of bringing its ideas together.