(From the Spring 2013 issue of Everything Matters: In Patient Care)
Mary Jane Gerhardstein, Director, Clinical Services and Care Coordination
When you are a patient or a family member at a children’s hospital, everything matters. We all know this but do we understand what it takes to make this a reality for every child and family we serve? To address everything that matters, we realize that we must not only provide patients with expert care but we also need to convey to them that they matter as the unique individuals they are - not as a set of symptoms, a number on the bottom line or as a room to be cleaned. When we fail to connect with patients and their families in this way, we diminish their trust in us and their ability to join with us in their care and treatment. I have often heard families say, “I need to know how much you care before I care how much you know.”
In the article “Promoting Dignity, Respect and Compassionate Care,” Julienne Meyer defines respectful care and the importance of promoting the dignity of the patient in this way:
“Dignity is concerned with how people feel, think and behave in relation to the worth or value of themselves and others. To treat someone with dignity is to treat them as being of worth, in a way that is respectful of them as valued individuals…When dignity is present people feel in control, valued, confident, comfortable and able to make decisions for themselves. When dignity is absent people feel devalued, lacking control and comfort. They may lack confidence and be unable to make decisions for themselves. They may feel humiliated, embarrassed or ashamed.”
We serve patients from around the corner and across the globe; patients who are well-resourced and those who have few supports, patients who have similar backgrounds to our own and individuals whose lifestyles and values are unfamiliar to us. So how do we engage each of them in a way that conveys our respect and care for them as individuals? This is a challenge that requires us to dig deep into who we are, to know our own values and to actively learn about others. The principles of patient and family-centered care and cultural competence provide some framework for this work.
The basis of cultural competence is understanding and respecting the various traditions, values and experiences of others. There are several levels to this understanding. We are most familiar with the broad cultural categorizations of various ethnic, racial and religious groups. These provide us with general knowledge of the beliefs and traditions of broad categories of people. For example, you may be familiar with the requirement that Jewish families who keep kosher adhere to specific dietary rules or the tradition of Muslim women to wear a hijab (head scarf) in public. Beyond general categories and group descriptions, each family and individual within a group has values and behaviors derived from their own particular experiences. These experiences may stem from their country of origin, how long they have been in this country, their education level, socio-economic status, religious beliefs or sexual orientation, as well as their individual and family involvement with the health care system.
That general knowledge about cultural practices and traditions can be learned from books and websites. However, we need, however, to refrain from putting people in buckets based on these broad generalizations. There is no shortcut. An individual’s unique experiences and beliefs can only be learned from interaction with that person. We need to invite him or her to talk with us about the unique factors that affect his or her health. This helps us understand what contributed to his or her illness and the resources he or she has or does not have to address his or her health problem. Key communication behaviors to remember include listening without judging and asking questions to be sure that we understand the meaning of what the individual or the family is telling us.
In giving information to families, we need to use words and examples that the family understands and use a style that is comfortable to that family. We can usually take our cues from the family. Use their words where you can. Before we are finished with a communication, it is important to ask the family to tell us in their own words what they heard. This is not a test for the family but an assessment of how well we were able to communicate the information. For health care to work, we need to fit into their world, not force them into our world. The more unfamiliar we are with the culture or perspective of the patient and family, the more diligence we need to assure that information is shared and received accurately.
Practices and communications that are culturally competent and individualized to the patient and family contribute to reduced errors in communication and higher quality care. Just as important, these behaviors help us convey our concern and respect for each patient and family so they can trust us, continue to seek care from us and engage as fully as possible in their care.