In the next three posts, I’ll be addressing issues related to family-centered care—what it is, how to get it, and what it looks like (in settings that are physically and administratively structured to provide it). My own orientation is to maternal and newborn care, and most of my examples will come from that setting. In addition, I’ll also include examples from other settings, based primarily on my own (and others’) experiences as either patient or family member. I’d like to consider what I write not as prescription or dictum but rather as a starting point for discussion and dialogue, so don’t hesitate to weigh in!
Long ago and far away, in a galaxy all too familiar to those of us of retirement age and beyond, “patient care” meant that individual recipients of care were isolated from their families and subjected to the routines and rules of caregivers … no questions permitted/no explanations given. Even visiting hours were restricted to a few hours a day, and who could visit was usually limited to one person. Visiting hours were also determined by the convenience of the caregivers. As an example, I’ve been told a story about my grandfather’s attempt to visit my mother and my newborn sister in 1943. As an Italian immigrant, American rules and regulations were, at best, peripheral to his life and frequently incomprehensible. So he got all dressed up (a rare happening for him), likely traveled by bus or streetcar, and went to the hospital to visit. He was summarily turned away at the door … he was not the patient’s husband, and the possibility of seeing the baby was even more remote (even the mother barely saw the baby). Confused and humiliated, he left. He was, as it turned out, close to his last illness and died less than a month later, having never seen his granddaughter. What’s interesting is that I heard this story for the first time from my mother some fifty years later, so you know the impact it made.
Fast-forwarding to the present, what, then, is family-centered care? At its core, it is care that proceeds from recognition that human beings are connected to one another in groups we call families, and that the health or illness of one can’t be separated from the context of the individual’s family. Quite literally, families make a difference in health maintenance, in healing and/or in the quality of dying, and one sick member means everyone is affected. It’s care that respects multiple types of family configurations and recognizes whatever a person says constitutes his/her family. It’s care that recognizes the rights of families to both information and accommodation and that provides mechanisms for communication between and among caregivers, patients, and families. How this care is actually structured may well vary, but no structure or process can exist without that core.
Here are a few clues to how you can determine if an institution or health system is committed to family-centered care:
1. Is a copy of a Patient’s Bill of Rights posted in one or more prominent place(s)? This could be the basic statement from the American Hospital Association or something more specific to the institution or service. In either case, look for statements about incorporation of families into care.
2. Is a copy of the above available to both patient and family, especially at the time of admission?
3. Does the mission statement reflect commitment to family-centered care? As an example, the University of Michigan Medical Center’s mission statement includes, “Patients and Families First.” That doesn’t mean that the long-standing mission to research, education, and care has changed, but how that mission is configured has shifted.
4. Is there a patient/family advocate or representative available?
5. Does the institution have patient/family/parent advisory groups?
6. If the institution says it provides family-centered care, can it tell you what that looks like?
7. Does the institution provide a decision-making process that incorporates families?
To determine those elements (and possibly more) of family-centered care, look for web sites or phone numbers that can give you the answers. Short of common courtesy, don’t worry about how you ask your questions; just keep asking until you get the answers you need.
All of this means that, besides rights, families also have responsibilities in getting the care they need and want. These responsibilities lead to my next entry about processes to achieve family-centered care. Stay tuned.
Mary Ann Zettelmaier, MSN specializes in maternal-infant communication, with a comprehensive clinical focus on developing programs of family-centered care.