Ten Reasons to Be Skeptical About "Family-Centered Care" at DHMC -- and Everywhere Else

From the web site of the Institute for Family Centered Care:

"Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting. . . .

Patients and families are encouraged and supported in participating in care and decision-making at the level they choose. . . . Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care."

Been there, done that -- at a certain tertiary healthcare facility whose name I will not mention but whose initials are DHMC. And the realities of Ivy League healthcare suggest the following concerns about institutions that have glugged the Kool-Aid of the Institute for Family Centered Care:

1. This notion of "collaboration" works really well as long as the patients and family members tell the hospital authorities what they want to hear. When the message isn't welcome, collaboration can go out the window.

2. The only patients and family-members who are in a position to participate in this collaboration are those who have the socio-economic resources to be activists. Working-class families with significant healthcare needs lack the time and money to worry about anything beyond their loved ones' immediate needs. Thus the collaboration becomes significantly non-reflective of the institution's patient population.

3. When all is said and done, patients and their family members are consumers and healthcare providers are just that -- providers. Eliding this fundamental distinction serves to absolve providers of their obligation to use their professional expertise to give excellent service to consumers who lack this expertise.

4. Quality improvement in the healthcare settings takes money -- real money. Collaboration of the sort advocated by the Institute for Family Centered Care is a waste of time unless it includes patient and family involvement in how the institution allocates its financial resources. To my knowledge, this is not the kind of collaboration the Institute has in mind -- and, even if it is, to participate in a hospital's budgetary processes would require an extraordinary amount of time for a volunteer, especially one with significant health care needs.

5. You don't have to have a PhD in health policy to know that in today's healthcare environment it is the insurance companies that loom horribly large when it comes to the delivery of care. In this sense, patients and family members can collaborate all they want with folks from the hospital -- but at the end of the day they're meeting with the wrong people.

6. Family Centered Care is faux democracy. Real reform would mean letting the patients and their family members be the ultimate owners of the care delivery systems the need and support. As owners, they could elect the governing bodies of the relevant institutions and otherwise mandate real quality improvement, rather than merely beg for it within the hospital-controlled organs created under the Family-Centered care paradigm.

7. The interests of every patient and/or family members do not necessarily align. My idea of Quality Improvement, as the dad of a kid with cystic fibrosis, could well come at the expense of what is needed and desired by families using oncologists, endocrinoligists,, psychiatrists, etc. etc. And, believe it or not, I don't necessarily agree with other CF families about how to improve CF care!

8. The medical privacy regime mandated by HIPAA -- especially as interpreted by hospitals that have never gotten over their spiteful opposition to this federal statute in the first place -- isolates families from one another and thus precludes truly effective collaboration. It's as if workers were trying to form a union but are prohibited from knowing each other's identities.

9. Much of the time, what patients and their families really need on the Quality Improvement front isn't the opportunity to go to some meeting to hold hands and sing Kumbaya with hospital bureaucrats -- what they need is the ability to demand good and compassionate service in real time. Even the most empowered patient or family member has a difficult time talking back to a doctor or a nurse or a therapist or a bean-counter who is doing a bad job and/or just plain being mean.

10. The playing field isn't level. Sure, hospital decisionmakers may commit themselves to listening -- and they probably even do listen -- but they still reserve the right to do what they want. Family Centered Care might be more about appearances than anything else . . . if it's just a feelgood notion that offers healthcare consumers the illusion of meaningful participation, then it's actually harmful.