Patient and Family Centered Care is not only patient and family centered health care.

It
is the person and population centered care for optimal health. For the optimal health of
the population and of every individual under her individual circumstances, given our
knowledge, our resources and actions available.
Care that is concerned with lessening the illness burden. The places where the person meets
support are each microsystems. The common denominator of all these places is that they aim
at lessening illness burden and are concerned with the concept of optimal health. And they
always involve both providers, information technology and people with a need to work together
and in some relationship.
All microsystems in society that actively aim at lessening the illness burden (including Health
Care Providers and Home), count as part of Patient and Family Centered Care. It is not a
question of Whether, but that of How.
When Health Care Providers accept that they are part of person and population centered care,
with the aim to lessen illness burden in the relevant sub-population over time, the professionals
are careful and respectful when deciding what actions should be taken in a particular case.
Bearing in mind that each individual person is a complex system.
“The person or population in front of me is not only the subject of treatment actions, but also
the interpreter of what is meaningful and worthwhile, as well as a vessel of information about
the personal and general boundary conditions that have to be taken into consideration for the
sustainable effect of my treatment action. We are part of the same microsystem. Together we
are working to minimize, decrease, eliminate the burden of illness in individuals and
population.”
Look at one person. What are the places, the purposes, the people, the patterns and the
processes that are concerned with her illness burden? Loosely coupled places? Tightly
structured ones? Is the support provided simple, complicated or complex? What are the
metrics that show us the value of actions taken? Actions not taken? This mapping is important.
Truly Patient and Family Centered Care has a potential of bringing society together as a whole
again. As someone said: “New levels of cooperation among people from different disciplines
and organizations will be required. Competition might change from a focus on “us v. them” to
become a collaborative competition against the unmet social need for health. This can build
camaraderie and appreciation for diverse gifts, ideas, and talents. We need to overcome the
deep habits which have fostered unnecessary competition among people and implicit
covenants of neglect about unmet need.”
/Andreas Hager, Hanover, New Hampshire, 17 November 2009

Consider and reflect for a while. Use this story or your own experience. Or both.

Road to a Diagnosis
I step inside the door at home. It feels gray and darkly frightening. There are vases of
autumn flowers from the gardens at Ulriksdal placed throughout our three room flat on
Kungsholmen. It’s empty and the beds are unmade. I feel I won’t come back here again,
not until everything is resolved.
It is September 2003, and my wife Cissi is left behind at Astrid Lindgren Children’s Hospital
with Sonia, who is four months old. We have been at the hospital a week or so this last visit,
and I’m home to pick up a few things.
It is the summer of 2003. Back at the hospital. The chronology is unclear. We have spent June,
July and August taking care of our newborn daughter who hasn’t been well. Baby-worries like
vomit, many diapers and eczema are long considered normal. No blood tests are needed since
3-month old babies “have such low HB values anyway.” Our district physician and nurse
prescribe ointments and a wait-and-see. The children’s emergency ward investigates
Pylorusstenos but give it a “clear” and prescribe wait-and-see. When a nurse seems to worry
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especially about Sonia’s pale skin, we dismiss her suggestion. We in a Wait-and-See, aren’t
we?
We live in a rented vacation cottage on Torö Stenstrand, replete with a 180 degree sea horizon
and wonderful late summer days swimming in a warm Baltic Sea. In the background we hear
breaking waves and cultural radio P1’s non-stop blare. The eczema is getting worse and
ulcered. The diaper area is so inflamed that Sonia shies away from touch with screams and
cries when we change her diapers. We leave our quiet place of refuge when the rash no longer
can be ignored. At the emergency room we get a referral to the dermatology clinic at
Karolinska Hospital.
The dermatology clinic is not at all as cautious and evasive. Sonia’s blood values are
disastrous and the eczema is of seldom seen character. We give Sonia blue baths. We daub
and lubricate. See families and their atopic children struggle with doctor’s visits and treatments.
Anna Lindh dies.
We get admitted. This must be investigated. The dermatologist sees something in a
microscope that suggests a remote form of cancer; Histiocytos. Biopsies are taken from
Sonia’s buttocks and breast. The test analysis takes four days. During this time we stay at the
Q63 ward. From a doctor of oncology we get the answer of a probable histiocytos diagnosis.
We mourn by Sonia’s bed. Sonia is getting blood transfusions and nutrition through an IV.
Black abyss. Death is near. “Why Sonia? Damned, so unfair for such a little one. Why not me
instead?” I cry in by the wind-up teddy bear and Fisher Price train at Sonia’s bedside.
We are moved to Q8-something, the oncology ward. We are cared for by warm and gentle
hands. Great experience with the blackest of black. We see families and children with cancer
struggle with doctor’s visits and treatments. All kinds of cancer cases. “Our daughter was only
four days.” “Our son was one and a half.” “We have struggled for a year.” Mats Sundin visits
and autographs a skating teddy “To Sonia.”
After a few days we receive the answer: “It’s not cancer, it’s something else.” We return to
Q63. Now it’s Gastrology’s turn to give it a go. Blood levels are checked, thirty vials. Sonia gets
a strawberry lollipop. Intestines are checked from the inside, it looks peculiar. Lack of zink.
Medical literature is consulted. “Yes, there is, as a matter of fact, a kind of intestinal trouble that
solely leads to zink deficiency.” Zink pills are prescribed. “Voila!” In a few days, Sonia’s
eczema has almost disappeared. After a week, it’s completely gone. We are sent home.
Back to life. We receive ten or twenty tubes of effervescent tablets. Sonia might need this her
entire life, but it is a simple solution. Gastro can dismiss us. We get a referral to the
pediatrician’s office for a check-up after about a week.
The pediatrician at Serafen is not at all satisfied. Seeing Sonia’s blood tests, she wants us at
the hospital directly. We are, once again, at Q63. We know the drill. Seeing families and their
babies struggling to face open heart surgery and cleft palate fixes.
Ourselves, we are in a state of flux. There is no real plan. Everything is up to investigation.
Another week goes by. For a while, we are the ones most to pity on the Q63 ward. Comforting
words from the nightshift nurses. “It’ll be all right, you’ll see.”
I step inside the door at home. It feels gray, and darkly frightening. There are vases of autumn
flowers from the gardens at Ulriksdal placed throughout our three room flat on Kungsholmen.
It’s empty and the beds are unmade. I have a feeling I won’t came back here again, not until
everything is resolved…I leave the apartment.
It was an assistant physician who arranged for a sweat test. The simple test that provides an
answer to the difficult. The answer came on a Friday, but not to us. “Could it not be CF?” We
borrowed all available books from the library and read on the internet. CF, it sounds like a
death sentence when you read about it. “Treatment and care is different nowadays, that
material isn’t providing a current picture,” the doctors said when they noticed what we were
reading. A feeling of avoidance. “Take a break over the weekend.” We went to Djurgården with
Sonia who had a central venous catheter, CVC. Went to Blå Porten.

2
We received the answer on Monday. “Sonia has CF. They will take care of you at Huddinge
Hospital.” The doctor barely managed to look us in the eye. It was difficult. Our nurse helped
us with the transport.
At Huddinge Hospital we were met by Dr. Ferenc and nurse Vivi. Our education began and all
of Sonia’s symptoms were taken care of. We were in a safe haven. From a severely ill five
month-old baby to a one year-old in full control, with normal weight and on a fantastic island of
specialist healthcare. Hard regime, but hope for a good life. The start of Sonia’s life-long
journey with healthcare as her partner.