Throughout its two thousand year history, Western medicine has been dominated by two broad strategies which drive the delivery of health care.
– In system-centered care, the needs and benefits of the system- the health care facility and the health care professionals staffing it- drive the provision of care.
– In patient-centered care, the strengths and needs of a patient drive the provision of care.
But there is a third strategy which, until recently, has been vastly underutilized- yet which could be even more effective and efficient than either strategy listed above.
– In family-centered care, the priorities and choices of a patient and their family drive the provision of care.
An example of the differences in the presentation of care is demonstrated by the Association for the Care of Children’s Health. Consider a hypothetical scenario of a patient requiring a special diet while in the course of receiving health care interventions.
– In a system-centered care facility, test results may be required to be sent ahead before a nutritionist consult is granted; the patient’s health insurance (or lack thereof) may be taken into account; overall, considerations will be made based on their benefit to the health care facility, rather than the patient (i.e., making dietary decisions before the patient has had contact with a nutritionist).
– In a patient-centered care facility, a nutritionist may assess the patient, design a meal plan, and give it to the patient. While this approach does address the clinical needs of the patient as it is addressed within the confines of the health care facility, it does not address detriments this approach may produce. Often not considered are the patient’s ability to provide for themselves; how their nutritional needs may change upon discharge from the hospital; how nutrition relates to the patient’s health care diagnosis; as well as their dietary preferences and cultural practices are often not considered.
– In a family-centered care facility, a nutritionist may ask to meet with the patient and their family to jointly design a meal plan in line with the patient and family’s resources, preferences, and other realities of their ability to provide continuing care outside the health care facility. Great emphasis is placed on the family’s ability to help the patient provide a continuance of a care diagnosis after they are discharged from a health care facility.
Recent studies suggest that family-centered care is the most effective method of delivering health care services. This is especially important in light of our search for an answer to the health-care crisis currently facing our nation.
But why is family-centered care more effective- and how does it impact our goal of providing essential health care services to every American citizen?
What is Family-centered care?
Family-centered care is the realization that families are a part of a patient’s care, and are not to be shuffled aside, restricted by “visiting hours,” or ignored in any way.
Julie Blackwood, RN
Family-centered care is a method of medical intervention that shapes healthcare policies, programs, facility design, and day-to-day interactions among patients, families, physicians, nurses, and other healthcare professionals by making a patient’s family an integral and co-equal part of a healthcare team. A patient, and their family’s, experience with their care is widely recognized as an essential part of health care outcomes. Thus, under family-centered care, the patient’s family as an essential tier of the patient’s support structure while he/she is in the hospital, and the family members are generally closely involved with the care and care plan of the patient.
Making patients and their families integral and coequal parts of the health care team improve the quality and safety of a patient’s care by helping to foster communication between them and health care professionals; by taking familial/patient input and concerns into account, the patient and family feels comfortable questioning staff on a patient’s plan of care, and both patients and their families are “on board” in terms of what to expect with medical interventions and health outcomes. Family-centered approaches to health care intervention also generally lead to wiser allocation of health care resources, as well as greater patient and family satisfaction.
What is “family” defined as?
As far as my own health, involving my partner is important, but the doctors and nurses tend to treat him like he shouldn’t even be there. I have had to fight for him to be included. My extended family have no business knowing about my health issues, so I’d be pretty pissed if somebody tried to involve them, even in mental health or matters of life support and the like.
Medical facilities that implement family-centered care generally define “family” as a patient’s spouse, significant other, parent, adult children, friends, or other primary caregivers as identified by the patients themselves, or a legal surrogate. Strides are generally made to be as inclusive as possible with this process; however, not all medical facilities will grant access to domestic partners in cases where doing so conflicts with the Health Insurance Portability and Accountability Act of 1996. However, recently these definitions have evolved to primarily reflect the wishes of the patient, and health care facilities will generally only bar someone from the process if asked to do so by the patient, a legal surrogate if the patient is incapacitated, or if required to by law.
History of family-centered care in modern health care
When visiting friends and family in other hospitals, I’m always surprised by the lack of communication. It seems like one doctor comes in and tells them one thing, and another doctor comes in later and says something different. Medications are ordered or stopped, labs are ordered, and the patient doesn’t know why. When I ask my friend about the plan for discharge they have no idea because it’s never really been a discussion with a ‘team’, just different doctors giving their opinions without communicating anything substantial to the patient. It drives me crazy. It seems like the most important part of the doctor’s day is giving orders, while the most important part of our day is meeting with the family as a team.
Melissa Forton, RN.
Family-centered care emerged as an important concept in health care at the end of the 20th century; but the implementation of Family-centered care was met with a variety of snags. Prior to the early 1990s, the relationship between care providers and patients was frequently distant. The traditional model of care revolved around physicians, and an expectation that patients and their families would assume a passive “observer” role, rather than as a participant. Healing was treated largely as an abstract or business-like affair. Special requests by the patient were seen as interfering with the provision of their care or even as being a detriment to their health. Modern ideas like open visitation or care partners were almost unheard of and were generally dismissed as impossible to accomplish. This was compounded by the implementation of Health Maintenance Organizations, which successfully reigned in the rising health care costs of the 1970s at the cost of the patient-health care worker relationship.
Much of the early work on family-centered care emerged from the pediatric and geriatric medicine fields. For example, as research came to light about the effects of separating hospitalized children from their families, many health care institutions began to adopt policies that welcomed family members to be with their child around the clock. As awareness increased of the importance of meeting the psychosocial and holistic needs of children in the course of their medical care, the family-centered care model began to make serious headway as a bona fide intervention model. This was further encouraged by Federal legislation in the late
1980’s and early 1990’s that provided additional validation on the importance of family-centered principles.
Beginning in the mid 1990’s, family-centered care spread from pediatric populations into the general health care setting. Research began to indicate that many of the supposed detriments to family-centered care were negligible, not supported by research, or simply untrue. The concept of “open visitation”, in which family members of an admitted patient are allowed to visit them on any schedule, was long held as a contraindication to sepsis control, as well as being an undue distraction on a patient’s ability to heal.
However, studies conducted in 2001 showed that open visitation had little to no effect on physiologic parameters such as heart rate, blood pressure, respiratory rate, cardiac arrhythmias, and intracranial pressure. Indeed, evidence suggested after family-centered care was implemented, anxiety levels and the general cardiovascular health of patients were positively affected, leading to fewer medical interventions being required (physical or chemical therapies in particular). Another area of concern- septic and infection control- found that when a patient’s visitors were educated in the proper aseptic procedure (such as hand washing and use of hand sanitizer gel), infection control outcomes were not negatively affected by unrestricted visitation.
Patient care was also positively affected. Decubidation rates in facilities with family-centered care dropped significantly. Family and close friends were also more likely to identify slight variations in the patient’s mental or physical health that health care professionals largely unfamiliar with the patient may miss. Furthermore, while health care professionals are very talented at their work, their jobs are generally limited by the walls of the health care facility, whereas a patient’s family is not. Enlisting a patient’s family as a part of their health care team helps enable their ability to assist, manage, and assess the patient’s healing after their discharge from a health care facility.
A study undertaken at the University of Virginia’s Children’s Hospital showed that sharing information and involving family in a patient’s care (via the family-centered care model described previously) had the following effects:
* A rise in staff satisfaction due to reduced phone calls by security at night;
* Improved consistency of information given to family members;
* A decrease in clinical workload;
* A significant rise in patient satisfaction scores on the Press-Ganey scale in the areas of Accommodations and Comfort of Visitors (93 to 98), Information Provided to Family (87 to 99), Staff Attitudes Towards Visitors (62 to 75), and Safety and Security Felt at the Hospital (86 to 88).
Combined with this information, serious inroads were made into combating the misconceptions held by medical professionals towards the concept of family-centered care. Holding focus groups to discuss preconceived notions versus research as to the benefits and detriments to family-centered care was found to have an almost ninety-percent success rate in furthering the acceptance of family-centered care, and helped to foster a sense of “ownership” amongst health care professionals in its implementation.
How do nurses and patients feel about family-centered care?
I believe in family-centered care because I’ve seen it in practice and have seen the wonderful results. Each family that I encounter is able to spend time with the entire health care team- physicians, RNs, sometimes nutritionists and social workers, etc. During that time, we all discuss results, how the parents feel the patient is doing, what type of things to expect throughout the day, and discharge goals. When the parents are well informed, they are more comfortable with the high stress situation of having a hospitalized child. When they are invited to participate in rounds and in the discussion of their child’s health, they feel empowered. When it comes right down to it, no one knows the patient the same way a parent does, and the team is able to acknowledge that. Once we’ve informed the parents about what goals their child will need to meet in order to go home, the family begins to work towards those goals with their child. For example, if one of the goals is to have the patient drink x amount every 8 hours, the parents almost always take it upon themselves to encourage their child to drink. If the goal is that the baby no longer needs NP suctioning and only need regular bulb suctioning, we notice that the parents tend to try the bulb suctioning on their own before calling for the nurse. We also measure all ins and outs, so we have the parents write on a dry erase board every time their baby eats and the amount, and we weigh the diapers. The parents then really focus on how much their baby is eating, and how often. When families are asked for feedback, most of our comments include statements that the family was happy that they were included in rounds, that they felt they were always kept updated, and that they enjoyed the open communication.
Melissa Forton, RN.
Family members can stay in the patient’s room. Couches fold out into beds. We have full kitchens on each floor for families to cook dinners. We provide showers for family members to bathe. We have games; provide snacks and coffee, stuffed animals and “kiddie packs” to keep younger children occupied… As far as we’re concerned, when a patient is admitted their family is, too. And yes- it’s exhausting.
Julie Blackwood, RN.
One night last fall my five-year-old woke up and couldn’t breathe. She’d been kind of wheezing/sniffling a bit for a day or so, but I assumed it was the usual autumn allergies kicking up and I let it go, because it’s something you just have to kind of get used to in this area and because we don’t have insurance.
Anyway. She woke up and couldn’t breathe. It sounded like that goosey kind of cough that lets you know the person isn’t getting any air. I called my mom, who’s been a nurse/professor for 50 years; she threw some clothes on and came over with her stethoscope, listened to the Babe’s chest, and said we needed to go to the ER. At the ER, we were treated absolutely like human beings.
The RNs/DO on duty all talked to me like I was an intelligent adult, related to the Babe on a five-year-old level in order to get her to respond to the treatment, and the rest of the staff was absolutely courteous to us all – including the know-it-all Granny who’d driven us there. I know that’s the way it’s supposed to go, but that’s the way it seldom goes, at least according to stories I’ve heard. It’s not as though we have a lot of choice of where to get emergency treatment, but they had a choice as to how we were treated while we were there.”
At four, it’s harder but at six and eight my kids have been fine with discussing their treatment with me and their nurse and doctor. We keep a medication chart up and they will remind me sometimes it’s time for the next dose. Our family nurse and doctor engage in conversation and ask them what is wrong, and explain what’s wrong and how to treat it. Just recently my daughter had strep throat. I took her in and they asked her what was happening, and turned to ask me a few questions about her fever, etc. They explained to her that she had an infection in her throat and would have to take antibiotics and how they would help her to feel better. She was able to ask questions about her headache and 105-degree fever, and why she was sore and it was explained it all to her wonderfully. She left far less whiny and in better spirits.
Are there any limits, complications, or contraindications to family-centered care?
One of the things that I think is challenging for a new RN or doctor is explaining things to the family. For example, if you are going to be checking a renal profile because you think the baby is dehydrated, you have to tell the family what you are checking
. “Just some blood work” isn’t acceptable. You have to find a way to explain simply to the family what you are doing and why are you are doing it. You’d have to explain it as a blood test that helps us determine if the baby is dehydrated. In rounds, when the doctors go over lab values, the parents have no idea what is being talked about, so that is when you say something about the values being normal or close to normal and that is what you’d expect. Or that the values are off and that is why we are going to keep giving the baby IV fluids. It just forces you to communicate well with families. Sometimes it can be really challenging because there may be some parents who are incapable of understanding what is going on. Other times you have really smart parents who ask lots of questions and immediately grasp the concept. The only drawback that I’ve ever encountered with family-centered care is this – one of our discharge criteria is that parents feel comfortable going home. Rarely, we will have a parent who still states that he/she is not comfortable leaving the hospital. In those cases, we sometimes will continue to watch the child another night, but occasionally we need some in depth discussion and education with the family. These cases are when a patient is medically stable and ready for discharge but the parent feels uncomfortable leaving. Most of the time this is understandable and we have no problem with continuing to monitor the child and talk with the family. On a few occasions, it is a situation in which a parent just doesn’t want to leave (for various reasons). It can be frustrating, but these types of situations are rare.
Melissa Forton, RN.
Family-centered care does have its limits, due to a variety of reasons. For obvious reasons, the implementation of family-centered care is contraindicated in situations of acute or intensive care. When a patient’s health is threatened enough that they are balancing precariously between life and death, allowing unfettered visiting by family members or responding in depth to patient/family requests can interfere with the provision of care by medical professionals.
Cultural interactions can also play a role as complication of family-centered care. An example of this would be a Muslim family grieving for the loss of a family member, which is significantly different than what is usually encountered in Western medicine. The British Medical Journal describes it thusly:
“(The) crying and frenzied behavior is intense. They (the family) cry as if they are pouring out their hearts: the women yell and scream, beating their breasts and at times are so overcome with emotion that they fall into a faint. These expressions of grief continue for days.”
While this behavior may seem odd to outside observers, it is perfectly appropriate grieving behavior for that family’s culture. However, “yelling and screaming” may interfere with the healing of other patients, who may generally associate such behavior as being inappropriate.
Patients may also take advantage of the medical staff’s hospitality. As family-centered care revolves around the patient’s family existing as an integral part of the healing process, great strides are made to accommodate the family’s needs during the patient’s stay in the hospital. This can take many forms- bringing them food, offering them the freedom to come and go at leisure from the patient’s room, the use of family-designated waiting rooms, et cetera. These privileges have the potential to be abused, further taxing the medical staff- a contraindication of the purpose of family-centered care, which is designed to lighten their workload.
There are also less tangible complications to providing family-centered care. Recently, in my own clinical settings, I was assigned to work with “John”, a total-care patient who suffered from cerebral palsy. “John” had been admitted to the hospital for a heart-shunt replacement; however, he had picked up a post operative infection, and was suffering from secondary side-effects from both the operation and the thirty-some medications he was taking every day. As a part of our clinical practice, we are encouraged to meet our patients the day before we work with them, to introduce ourselves and to better get to know them. When I arrived on the unit, John was in pretty bad shape. His fever had spiked, he was having uncontrollable seizures from the cocktail of drugs coursing through his body, and he had just finished a half-hour bout of vomiting.
Speaking to his charge nurse, I had learned that his parents (and his mother in particular) did the majority of his care. So I stepped into John’s room, with all of the training I’d received on cultural and holistic interactions with patients and their families running through my mind. I introduced myself to John and his mother, and shook his mother’s hand. She regarded me very coldly as I explained who I was and why I was there; she was polite, but curt. I got the distinct impression that she didn’t care much for a “wet behind the ears” student nurse getting involved in things she likely had far more experience with than I. She suggested she might discuss with the charge nurse whether it was appropriate for me to be assigned to work with her son.
This was disconcerting- nothing I had been taught had prepared me for a situation like this. However, I understood John’s mother’s concerns, and took no offense at her demeanor. I thanked her for her time, and retreated to the relative safety of the nurse’s station to think things over. As a parent myself, I can understand her position. She almost certainly did have more total-care experience than I, and obviously knew more about caring for her son than I did from a few hours of poring over his charts. And as we’ve discussed, family-centered care is successful specifically because the family knows the patient better than anyone else, and they are the best support mechanism for their healing.
But that does not abrogate me from my duties as a nurse. I am accountable to many people- my patients, the floor nurses, the patient’s primary care provider, my clinical instructor, and the University, to name only a few. While the tenets of family-centered care are built around giving patients and their families far more leeway than was previously the case, that always has the potential to be abused.
So where is an appropriate place to strike a middle ground?
In the example of the Muslim family grieving for the loss of a loved one, the proper implementation of family-centered care can identify these cultural differences in the grieving process before they occur. Thus, accommodations can be made to allow the family to grieve properly, without disturbing other patients. In respect to the potential for abusing the medical staff’s hospitality, the tenets of family-centered care are predicated around preventing this. Thus, in the Care Partners program delineated by the University of Virginia Health System, only one person (designated by the patient) is truly allowed free reign to come and go from the patient’s bedside. The “Care Partner” is also instructed on the possible contraindications to the patient’s healing that would result from their hospitality being abused, and empowered by the hospital staff to help them ensure that doesn’t occur.
As for “John” and his family, there is no firm answer to that question. Situations like that need to be handled on a case-by-case basis. Family-centered care is structured to take advantage of already-existing support systems, and is intended work alongside standard nursing and medical interventions, not to replace them.
Family-centered care, when implemented in keeping with the best interest of the patient, appears to also clearly benefit health care facilities and providers. Recognizing the benefits of familiarity with the patient that family members bring to bear – both in knowledge and as self-motivating assistants in the care process – is not in opposition to creating boundaries for family members to operate within. In contrary, providing a bounded and structured framework provides
family members the freedom and focus to effectively help their loved ones.
The benefits of family-centered care appear well worth the effort to integrate into existing healthcare practices.