Meaningful Care

Dr. Mikkael Sekaris at the Cleveland Clinic recently summarized a conversation with a husband and wife [here]. The husband suffered from advanced leukemia and had just been admitted to the hospital.

While there were low odds that further chemotherapy could arrest the disease, family and doctor decided to try.   The conversation about next steps resulted in a decision to deliver the chemotherapy outside of the hospital, which allowed the patient—a father with a small daughter—to attend a father-daughter dance that really mattered to the family.  

Dr. Sekaris writes:

“As we get older and spend more years practicing medicine, doctors and nurses tend to get better at identifying the subtleties of illness, and our decisions and recommendations become more accurate. But more important than that, because we’ve lived more of our own lives, I hope we also recognize when what’s meaningful to our patients trumps anything medical that we can offer.”

‘What Matters to You’:  Barry and Edgman-Levitan (2012)

Is there a way to make the shared decision-making described by Dr. Sekaris a regular and reliable event?  I’m part of a project team tackling this challenge for adults 65 years and older.

We’re inspired by a 2012 Perspectives article in the New England Journal of Medicine, “Shared Decision Making — The Pinnacle of Patient-Centered Care” by Michael J. Barry and Susan Edgman-Levitan.  They urged health care providers to complement the standard ‘What’s the matter?’ question with the patient-centered question ‘What Matters to you?’

What would it take to have care teams ask and act on ‘What Matters’ as they engage with older adults across a range of health care settings?

A useful ‘What Matters’ method must handle variation both within and between individuals.

‘What Matters’ changes over time for individuals, affected by changes in health conditions including serious and terminal disease as described by Dr. Sekaris.

Language differences, cultural practices and religious beliefs add complexity as care teams interact with a range of patients and families.  

Our project team also recognizes that tests and early implementation to focus on ‘What Matters’ may begin with advantaged populations, like people economically secure with high English fluency and no cognitive impairment.   We certainly will have failed in our ‘What Matters’ work if organizations never move beyond advantaged populations.

Trust and ‘What Matters’

Our project work so far includes collating specific questions and studying communication tools like the Serious Illness Conversation Guide that promote and normalize better communication about What Matters.

While I did not see any of our collated questions in Dr. Sekaris’s story, I sensed his empathy and compassion. 

Ultimately, getting to What Matters requires trust.  Wife and husband trusted Dr. Sekaris enough to speak about what mattered, which led to a care plan that honored their goals.

In the swirl of brief care meetings and existential concerns, I believe that specific What Matters questions and communication tools only matter to the extent that care teams use them to build trusting relationships.

Notes by Edgar Schein on Relationships and Trust

“We use the words relationship, trust, and openness glibly and frequently, as if we think that everyone will, of course, understand what we mean.” (p. 27)

“A relationship is a set of mutual expectations about each other’s future behavior based on past interactions with one another…In a good working relationship, I need to be able to predict how much I can count on you to make and keep your commitments and how open and reliable you will be in your communication with me. One could say that when we have a ‘good relationship,’ this means that we feel a certain level of comfort with the other person, comfort that is based on this sense of each of us knowing how the other will react and that we are both working toward a goal that we have agreed upon. That feeling of comfort is often what we mean by the word trust.” (p. 28)

(from Edgar Schein, Humble Consulting, 2016, Berrett-Koehler Publishers. Kindle Edition)