India - patient empowerment - patient values - shared decision making - USA
Introduction
“Patient-centered care” (PCC) is the buzz word in modern diabetes care. We continue
to hear and learn more about PCC, and its multiple dimensions.[1]
[2] Having the patient as the leader member of their diabetes team, many of us believe,
helps patients understand how to balance their life with diabetes optimally. The PCC
model has the patient in the center, while we, the diabetes providers, walk by their
side. We educate, support, and empower them to help ensure the fullest of health,
both psychological and physical. This fuller health allows our patients to live productive
lives with their families and friends, grow in their careers, progress in their schooling,
their sports, maintain their mental health, and excel in all aspects of life.
I have been fortunate to experience PCC from both sides of the table as a person with
diabetes, as well as a diabetes educator. This has helped me understand and internalize
the concept of practical PCC, as opposed to just knowing the theory of this approach
to diabetes care. Being on both sides of the patient-provider encounter has allowed
me to look at PCC through a two-way mirror. In this brief communication, I hope to
share my reflections on PCC, as learnt as a patient, and then a counselor, at Joslin.
Staying focused on PCC, let me share with you two exceptional examples of this approach
that I have benefited from. One episode is from the day that I was diagnosed with
type 1 diabetes, some 51 years ago. Another powerful example of PCC is from my first
day as the first ever full-time psychologist/counselor at the Joslin Clinic in Boston.
Diagnosis Day: I Can Ski
When Dr. Leo Krall told my parents and me that I had diabetes, my mother′s eyes filled
with tears. I remember looking at my father, the pinnacle of strength for our family,
and noticing the tears running down his cheeks. My father was a bright man with an
outstanding academic record. He had graduated from Harvard near the top of his class,
and even he did not understand what this new diagnosis meant. I could only imagine
that if my tearful father did not know that something must be very wrong. Even today
so many people know very little about diabetes. If they do know something about diabetes
this limited knowledge all too often focuses on the sad stories; the disabling complications
of diabetes.
My father then grabbed Dr. Krall′s arm and led him out of the room into the hallway.
His words still ring in my ears today, more than 50 years later, ever so clearly.
“What does this mean? Will my son be able to stay active and play with the other children?
We are supposed to go skiing next week; will he be able to ski?”
Within seconds, Dr. Krall came back into the clinic, with my father. I remember Dr.
Krall telling me that if I along with my parents would work with him and the team
at Joslin, to learn about balancing my diabetes, I would become the best skier ever.
I do not remember anything more about that first appointment. In fact that first discussion
with Dr. Krall was very short. I did not need to hear anything more from him at that
time. I heard what I needed to hear; that if I was willing to learn how to balance
my diabetes, I truly would become the very best skier. On this scary, emotionally
draining day, this is exactly what I needed to hear!
Learn to Balance
I had learned on my diagnosis day the most important lesson of all: If I balance my
diabetes, then I could be the very best I could be! This simple message along with
the love, support, and patience of my family and friends, as we learnt about diabetes
together, allowed me to grow. I was able to expand this “being a great skier” belief
into understanding that I could be the best in whatever I chose to go after in life!
I have grown with this belief from the very beginning, and try to share it with all
people with diabetes that I come in contact with.
Patient-Driven Education
This first unplanned diabetes experience serves as a constant, powerful reminder for
me, as a diabetes educator, that our teaching must always focus on what the patient
needs rather than what the outline says should be covered. This requires that we,
diabetes professionals, encourage and allow our patients to help set the agenda. We
are clearly the experts regarding the knowledge of diabetes treatment, but the patient
is the expert relative to their needs. Our role is to guide, coach, educate, and support
them so that they are best equipped to meet the multiple challenges their diabetes
presents every day.
Counseling Day: Dr. Priscilla White and the Cat
Counseling Day: Dr. Priscilla White and the Cat
Now let me share with you my first day on the job at the Joslin Clinic as Joslin′s
first full-time psychologist/counselor. I had the distinct privilege of doing rounds
with one of my early mentors Dr. Priscilla White, the famous diabetologist.[3] My practical learning began as soon as we entered the first four-bedded indoor ward.
As we walked toward the room, I remember Dr. White looking at just the front of the
patient′s medical record. Before we entered the room, she closed the medical record.
Right away, Dr. White started to ask this young girl with diabetes, how her cat was
doing. The patient′s eyes and the excitement in her voice displayed her approval of
Dr. White′s first question immediately. For what was no longer than 2 min Dr. White
powerfully taught me that as a healthcare professional, my care must go well beyond
just the insulin dose, exercise, and food. In those brief 2 min, Dr. White connected
powerfully with this young patient. Her caring question about something this young
patient valued nurtured a powerful level of trust from this patient. The remainder
of the discussion was focused on the patient′s life with diabetes and she shared her
thoughts readily.
Sharing Values, Sharing Decisions
Sharing Values, Sharing Decisions
It was this spirit of affirmation for her patients, knowing some important things
that her patients valued, and building a shared value system that was unique to Dr.
White. I saw how this focus on the total person, not just the biological person, helped
ensure that Dr. White′s patients were excited to share with her, and empowered as
they made suggestions as to what would be most helpful for them. Dr. White was the
expert in the room. However, she displayed humility with her patients. She would support
them, and when needed coach them to look at something differently if she deemed this
would be better for the patient. The level of trust that she built with her patients
allowed the dialogue to be robust and ensure that the patient more readily shared
relevant information with Dr. White and the medical team. The terms “PCC”, “shared
decision making”, and “bio-psychosocial model” had not been coined in those days,[4]
[5] but Dr. White embodied the very spirit of these concepts.
The Question is Within, the Answer is Within
The Question is Within, the Answer is Within
During those last few years of Dr. White′s active clinical practice, I saw numerous
times how her positive spirit would invite her patients to so often find answers to
their own questions. She and several of my colleagues at Joslin had a unique ability
to help the patients to develop and refine their questions, and develop best solutions
around the challenges of balancing their diabetes around their lives. As they helped
patients manage diabetes, they continued to explore additional questions with their
patients and family members so that the patient would so often develop their own answers.
Dr. White and these other brilliant colleagues were the experts, and guided the patients
when they did not understand enough about what was influencing their blood sugar management.
Powerfully, their questions which were developed by their patients′ responses, helped
mold the next question ensuring that the patient was taking the lead to develop solutions
to optimize their diabetes management.
Patient-Centered Care Today
Patient-Centered Care Today
After over 35 years as a mental health specialist, there is no question in my mind
that colleagues who adopt this patient-centered approach far more often, have a higher
percentage of patients who address the daily challenges of their diabetes management
in a significantly better and more efficient manner, than the bulk of the patients
who are just told what to do.
The PCC does not come easily for many of us. Throughout our schooling and professional
training, we are frequently asked to memorize facts and be able to state these facts
back to our instructors both verbally and on exams. All of us who are medical professionals
have obviously learned how to do this relatively well. To take this important knowledge
that we have gained from instructors and from books, we must couple it with a high
degree of humility coupled with our sincerity and expertise so that we can be the
most dynamic educators and clinicians for our patients.
Patient-Centered Care in India
Patient-Centered Care in India
During my short tour of India, to several cities and top diabetes centers, I have
been ever so impressed to meet a number of clinicians who truly embrace PCC. I have
seen PCC in myriad forms, in different settings, in multiple languages. But all these
facts of PCC share one common denominator: That of a respectful relationship[6] between the clinician and the person with diabetes. On behalf of people with diabetes
across the world, I applaud you and thank you.
“There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.” Albert Einstein
I am fortunate and thankful that I have so often been able to look at so much of life
as my multiple miracles!
How to cite this article: Madden PB. Patient-centered care at Joslin: Reflections of a mirror. J Soc Health
Diabetes 2014;2:45-7.
Source of Support: Nil.
