Person-focused Care

Person-focused Care

An expert geriatrician recently listened to my TED-like talk. That 15-minutes summarized 25 years of work. It covered why and how I consult with health care organizations. The work entails applications using 4 simple domains to think efficiently about patients and improve the care delivered. This geriatrician was a long-time used of these domains. (The domains’ plain names are Body, Mind, Activities, and Surroundings ©.)

“Wow, this is very polished.” Then he added, “Have you heard about person-centered care?” No, I hadn’t. “You should find out about it.”

The domains’ applications have evolved to improve individual patients’ care and be easy for clinicians to use. They support important themes – patient-centered care, health care literacy, self-management, and so on. What about “person-focused care”?

Good articles were easy to find.¹ Among the core concepts are:

• Individuals’ priorities or preferences for their care must be known.
• The person’s care must be viewed over time, beyond the few days or weeks of an acute illness.
• Added to the care of the patient (when an individual is sick) is an awareness of the whole person (the individual when not sick).

So too in our work:

• Patient/person preferences are an explicit sub-domain.
• The 4 domains remain consistent over a person’s lifetime regardless of health status. Health-related issues evolve within each domain.
• The domains are extended to patients/persons through a health care notebook they own. To it clinicians and/or they add, over time, their key health-related information organized by the 4 domains (Health Issues, Taking Care of Your Mind & Feelings, What You Do, and Where You Live and Work ã). This Notebook helps bring important aspects of their personal lives more reliably into the clinical world.

Good… our work supports another important theme - person-centered care - in health care delivery. 

1 Barbara Starfield, MD, PhD, a well-known professor in health policy, wrote about it in 2011 in The Permanente Journal. The American Geriatrics Society published an expert panel’s definition in 2016.

Simple But Profound Conversations

I just finished reading Dr. Atul Gawande's book Being Mortal.  He explores how we fail to talk about death - those important and uncomfortable conversations between doctors and patients.  Dr. Gawande provides multiple examples where treatments continue while healthcare professionals miss the forest for the trees. The patient is dying but no one talks about it.

As an example, I became responsible for the care of a middle-aged patient with metastatic cancer in our rehabilitation unit.  He and his wife had been told that we would get him better.  He would be going home.  After reviewing the records, examining and talking with him, I realized the man was actively dying.  He was in the last weeks of life when death is unequivocally near. No medical professional had told him the facts.

It fell to us, admittedly late in the situation, to have the conversations as described by Dr. Gawande.  We began to review the patient’s understanding of his illness and what was most important to him at the moment.  We shared the cancer's reality and how it was affecting his body.  These conversations involved his family and the treatment team. But before the discussions could be completed, he died suddenly. Tragically for his family, we had not resolved all the issues. It was also profoundly painful to me as his doctor, trying to do the right thing.

Talking honestly with patients is crucial to the quality of our work, whether in crisis or in basic care.  But how to structure those conversations in the crazy pace of patient care?  I have come to a framework based on my own experiences with rehabilitation and geriatric patients.  It is a simple 4-domain outline, easy to remember.  Each domain addresses a different area of the patient’s health: body, mind, activities, surroundings. Identifying issues within the domains can be key to providing quality care (1).

Called the Siebens Domain Management Model (SDMM), this framework is gradually being applied by others because it works. Here are three examples from clinicians who have used it during their patient conversations:

1. A physician in a rehabilitation unit reported, "I would have normally not considered asking Mr. A. about his future employment just a week after his bilateral below-the-knee amputations.  However the SDMM cue card (2) prompted me to ask about his work.  It required driving.  We set him up with our vocational rehabilitation services to start right after he left the hospital.  From there, he was set up with a training program for drivers with amputations.  Had I not started the ball rolling, there may have been some real delays in getting these services started.  The patient may not have returned to work as soon as he did, leading to possible significant loss of income."

2. Another physician had an  inpatient, wheelchair-user,  heading for discharge.  He was returning to his "previous living arrangements, which was with his wife in a first floor apartment with wheelchair ramp access and no stairs." The plan seemed appropriate.  However, using the SDMM framework, the physician knew to ask about his surroundings.  He revealed that he was not on good terms with this wife.  She had moved out two days earlier.  She would no longer care for him. She would no longer drive him thus leaving the patient without transportation.

The physician added, "This information greatly changed his discharge plan."  Had she not inquired systematically about his living situation, the patient's new circumstances might not have been discovered as quickly.  Bringing his major non-medical concern to light better informed the treatment plan for his life post-hospital.

3. A seasoned primary care physician had a patient with multiple sclerosis. He was losing his ability to walk.  During an out-patient visit, and using the SDMM cue card, she inquired about his spirituality.  She learned that he had a strong faith that helped him live day-to-day.  She told me, "I had had no idea and it was remarkable. I really learned something important about how he managed.  This helped me connect with him much better."

Conversations with patients provide us a deeper appreciation for them.  They need not always lead to immediate medical decisions, as in the discussion with the patient suffering with MS.  Other times, the resulting connections often improve our diagnoses and care plans.  Either way, the connections are at the core of what we doctors love most: providing quality care that includes conversations about strengths and solutions in the midst of adversity. Conversations that save us from missing the forest for the trees. Conversations that are simple but profound.

1 The Siebens Domain Management Model has 3 sets of terminology for the four domains. The four listed above – Body, Mind, Activities, and Surroundings – are the simplest. See Siebens H., "Proposing a practical clinical model," Topics in Stroke Rehabilitation 2011;18:60-65.
 2 The SDMM Cue Card (also called SDMM Communication Card), downloadable at no charge from the Resources on this website's home page. Please note Guidelines for SDMM Use as well. 

Laboratory Bench Research, the SDMM, and the Most Important Hurdle

Here’s my first blog post. This not-so-new technology is magic to those of us familiar with the pre-internet era. Here's something from my background to address a first question I hear often: "Why are you doing what you're doing?!” 

In college I found myself really enjoying laboratory “bench” research. We studied a “living fossil," a single cell organism that contained a cyanelle. This cyanelle was thought to be a step in plant cell evolution. It had characteristics similar to a blue green algae that may have been "eaten" by the organism. It then perhaps gradually evolved into modern day chloroplasts, those energy producing units in all green plants. Looking at the cyanelle's RNA could give us some clues about this possibility.

The experiments followed a careful protocol. There was an exact amount of solution, at a specific pH (better not mess that up), and a series of steps to be executed as precisely as possible. Then the extracted RNA was put on a gel electrophoresis to generate a pattern. This could then be compared to the RNA pattern of modern-day chloroplasts.

The RNA patterns turned out to be similar, between the more primitive cyanelle and today's chloroplast. It is hard to explain my excitement when discovering this finding, tracing prehistoric plant life to our modern gardens. (OK, exciting only if you are into that stuff.)

While I loved the bench research, I opted for medical school and patient care. But there was one aspect of the lab that I constantly wanted as a doctor. My hectic clinical care couldn’t be further from the clean (usually), organized (mostly) science laboratory. It bugged me no end that systems weren't more structured, more “scientific” in clinical care – especially when applied to  information management. I found myself making non-optimal decisions simply because easily attainable pieces of information were missing.

The drive to bring better organization to clinical care has pushed me for over 30 years to research and develop the Siebens Domain Management Model (SDMM). The SDMM's four domains (and sub-domains) can help to introduce a more systematic approach especially with more complex patients. The SDMM is designed to address our collective challenge to better manage health care by introducing one important kind of standardization.

I know I am not alone in searching for better organization in clinical systems. Just a few weeks ago, the theme was echoed in a public health lecture which touched on research by The Advisory Group. In its survey of 160 health care industry leaders there was general  acknowledgement that clinical standardization is the most important hurdle to integrating health care services. Maybe some of those leaders, like me, really enjoyed lab bench research with clear protocols.