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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 ofthe population and of every individual under her individual circumstances, given ourknowledge, our resources and actions available.

Care that is concerned with lessening the illness burden. The places where the person meetssupport are each microsystems. The common denominator of all these places is that they aimat lessening illness burden and are concerned with the concept of optimal health. And theyalways involve both providers, information technology and people with a need to work togetherand in some relationship.

All microsystems in society that actively aim at lessening the illness burden (including HealthCare Providers and Home), count as part of Patient and Family Centered Care. It is not aquestion 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 professionalsare 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 alsothe interpreter of what is meaningful and worthwhile, as well as a vessel of information aboutthe personal and general boundary conditions that have to be taken into consideration for thesustainable effect of my treatment action. We are part of the same microsystem. Together weare working to minimize, decrease, eliminate the burden of illness in individuals andpopulation.

Look at one person. What are the places, the purposes, the people, the patterns and theprocesses that are concerned with her illness burden? Loosely coupled places? Tightlystructured 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 wholeagain. As someone said: New levels of cooperation among people from different disciplinesand organizations will be required. Competition might change from a focus on us v. them tobecome a collaborative competition against the unmet social need for health. This can buildcamaraderie and appreciation for diverse gifts, ideas, and talents. We need to overcome thedeep habits which have fostered unnecessary competition among people and implicitcovenants 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 ofautumn flowers from the gardens at Ulriksdal placed throughout our three room flat onKungsholmen. Its empty and the beds are unmade. I feel I wont come back here again,not until everything is resolved.

It is September 2003, and my wife Cissi is left behind at Astrid Lindgren Childrens Hospitalwith Sonia, who is four months old. We have been at the hospital a week or so this last visit,and Im 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 hasnt been well. Baby-worries like

vomit, many diapers and eczema are long considered normal. No blood tests are needed since3-month old babies have such low HB values anyway. Our district physician and nurseprescribe ointments and a wait-and-see. The childrens emergency ward investigatesPylorusstenos but give it a clear and prescribe wait-and-see. When a nurse seems to worry

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especially about Sonias pale skin, we dismiss her suggestion. We in a Wait-and-See, arent

we?We live in a rented vacation cottage on Tor Stenstrand, replete with a 180 degree sea horizonand wonderful late summer days swimming in a warm Baltic Sea. In the background we hearbreaking waves and cultural radio P1s non-stop blare. The eczema is getting worse andulcered. The diaper area is so inflamed that Sonia shies away from touch with screams andcries when we change her diapers. We leave our quiet place of refuge when the rash no longercan be ignored. At the emergency room we get a referral to the dermatology clinic atKarolinska Hospital.

The dermatology clinic is not at all as cautious and evasive. Sonias blood values aredisastrous and the eczema is of seldom seen character. We give Sonia blue baths. We dauband lubricate. See families and their atopic children struggle with doctors visits and treatments.Anna Lindh dies.

We get admitted. This must be investigated. The dermatologist sees something in amicroscope that suggests a remote form of cancer; Histiocytos. Biopsies are taken fromSonias buttocks and breast. The test analysis takes four days. During this time we stay at theQ63 ward. From a doctor of oncology we get the answer of a probable histiocytos diagnosis.We mourn by Sonias 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 meinstead? I cry in by the wind-up teddy bear and Fisher Price train at Sonias bedside.

We are moved to Q8-something, the oncology ward. We are cared for by warm and gentlehands. Great experience with the blackest of black. We see families and children with cancerstruggle with doctors visits and treatments. All kinds of cancer cases. Our daughter was onlyfour days. Our son was one and a half. We have struggled for a year. Mats Sundin visitsand autographs a skating teddy To Sonia.

After a few days we receive the answer: Its not cancer, its something else. We return toQ63. Now its Gastrologys turn to give it a go. Blood levels are checked, thirty vials. Sonia getsa 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 thatsolely leads to zink deficiency. Zink pills are prescribed. Voila! In a few days, Soniaseczema has almost disappeared. After a week, its completely gone. We are sent home.

Back to life. We receive ten or twenty tubes of effervescent tablets. Sonia might need this herentire life, but it is a simple solution. Gastro can dismiss us. We get a referral to thepediatricians office for a check-up after about a week.

The pediatrician at Serafen is not at all satisfied. Seeing Sonias blood tests, she wants us atthe hospital directly. We are, once again, at Q63. We know the drill. Seeing families and theirbabies 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. Comfortingwords from the nightshift nurses. Itll be all right, youll see.

I step inside the door at home. It feels gray, and darkly frightening. There are vases of autumnflowers from the gardens at Ulriksdal placed throughout our three room flat on Kungsholmen.Its empty and the beds are unmade. I have a feeling I wont came back here again, not untileverything is resolvedI leave the apartment.

It was an assistant physician who arranged for a sweat test. The simple test that provides ananswer to the difficult. The answer came on a Friday, but not to us. Could it not be CF? Weborrowed all available books from the library and read on the internet. CF, it sounds like adeath sentence when you read about it. Treatment and care is different nowadays, thatmaterial isnt 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 Djurgrden withSonia who had a central venous catheter, CVC. Went to Bl Porten.

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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 helpedus with the transport.

At Huddinge Hospital we were met by Dr. Ferenc and nurse Vivi. Our education began and allof Sonias symptoms were taken care of. We were in a safe haven. From a severely ill fivemonth-old baby to a one year-old in full control, with normal weight and on a fantastic island ofspecialist healthcare. Hard regime, but hope for a good life. The start of Sonias life-longjourney with healthcare as her partner.

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