The Physician as Enabler

Ethical issues in medicine? The parent-physician relationship? Until seven years ago, I had given little thought to such questions, but three high risk pregnancies and three premature infants (only one of whom survived) changed my perspective dramatically. The subjects were no longer abstractions; they were personal realities. My husband and I confronted several ethical dilemmas in the hospital care of our three children. Being parents in an intensive care nursery was perplexing and we were unsure of our role, often feeling powerless and incompetent. We had both felt reasonably prepared for parenthood and were successful in our respective jobs. But nothing in our experience prepared us for this kind of parenting (even the basics were unclear) as we asked ourselves:

• What were we "supposed" to do as parents?

• When could we make decisions for our children?

• How would we know that we were making the best decisions?

We struggled through our experiences and don't regret the decisions, we made, but I do regret the energy we spent learning this new role. How much better to have focused that energy directly on our children! Hindsight helped me understand that some physicians guided and enabled us in our parenting role, while others did not. From our experience with both kinds of physicians come these suggestions about the parent-physician relationship and about the role of the physician. The suggestions are based on personal experience, but are also implicit in the literature on family-centered care. (Johnson B.H., et al. Caring ForChildren And Families: Guidelines for Hospitals.Bethesda, MD: Association for the Care of Children'sHealth, 1992.)

With rapidly growing technology, better informed consumers, and pressure from the health care system, the physician's role today is not an easy one. In the parent-physician relationship, neither the traditional paternalistic model, in which the doctor alone makes all decisions, nor the completely laissezfaire model, in which the parents decide, seems to work. I suggest another model:one in which the physician sees his or her role as that of helping parents to fulfill their role as advocates and decision-makers for their ill or hospitalized children. From my own background in management, I've borrowed the concept of enabling. An effective manager is not someone who "does it alone," but instead enables others to do their jobs well. The American College Dictionary defines this word as "to give power, means, or ability, to make competent." A physician can "enable" parents by:

1. Viewing the parent physician relationship as a collaborative one, in which the roles are different but complementary. I could always sense which physicians truly believed that parental involvement made a difference in medical outcomes; they were comfortable with their own role and expertise. Those physicians made us feel empowered as parents!

2. Recognizing and validating parents' own skills, expertise, and experience as these apply in the health care setting. Although we had no medical training or professional experience in health care, my husband, an attorney, and I, a manager, relied on analytic skills both in our work and in making decisions for our children. Some physicians understood that we needed to bring that expertise into the intensive care nursery in order to feel competent as parents.

3. Helping parents decide through identifying and evaluating options. Helping them understand the implications in each option; and choosing a "path" parents can be comfortable with. We wanted our child's physician to present all the options for treatment and to answer our questions about risks, benefits, and outcomes. Then we could feel able to make decisions.

4. Being willing to make a recommendation when the options are overwhelming or too emotionally difficult. I remember vividly the times when we were too weary, too scared, or both, to make a decision alone. We wanted to be able to ask, "What would you do if it were your child?" and receive a response from the physician's heart. And when a physician had already made us feel empowered, competent, and respected as parents, we could feel free to ask that question.

Deborah L. Dokken, M.PA.

Founding member of Parent Partners at GWU Medical Center, Board member of Parent Care, Inc., member of GWlfs Parent Support Advisory Group. This article was first published in the Children's National Medical Center: Ethiscope.



Speak Clearly Please/Ethics and Communication

Parents' Viewpoint

         In speaking with parents about what went smoothly and not so smoothly in their health care interactions, several key factors emerged that each parent viewed as important to the process. Parents wanted health care professionals to view their children in context - to talk about the emotional and social dimensions of the child as well as the physical dimension. They felt good when their child's physician demonstrated, "l know you and I've seen you grow " They wanted clinicians to address the larger context, i.e. what was "usual" for a stage of development or a particular diagnosis. And, parents wanted them to understand that the child was part of a family (a principal tenet of family-centered care).

         Active listening was also important. Parents believed that health care professionals should "look at the mom's eyes and see if she's happy or worried," Parents noted that both parents and children should be listened to, and that follow-up questions are important.

        Empowerment was a key element in strengthening the relationship between parents and health care professionals. Parents wanted to be acknowledged as "experts" on their own children to feel that professionals really need the valuable information only they can provide. When her gravely ill infant was transferred from one hospital to another, one mother wrote several pages of notes about her daughter so that the new staff would "know" her better. She felt empowered and respected when a nurse referred to the notes as a "wonderful care plan." No matter what situation parents may be coping with, we found that they wanted advice on the next steps - education about present and future action.

       Reassurance was a final important part of the communication process. Health care professionals need to remember that parents are often worrying about their child, experiencing an "alien" setting for the first time, hearing unfamiliar terminology processing new and complicated information, and dealing with various other family or work stresses. They need to be reassured about their child's well-being and about themselves as parents. The mother of three children described how much better she feels when her pediatrician tells her, "Don't worry; you're on the right track."

     Together, these components of effective communication that parents identified form an easy-to-remember acronym: CLEAR. Providing a simple framework for thinking about communication between health care professionals and parents, families, and children.

Context - Communication that explores and provides context.

Listening - Communication that demonstrates the health care professional is listening.

Empowerment - Communication that facilitates empowerment of the family.

Advice - Communication that gives advice about action and next steps.

Reassurance - Communication that offers reassurance. 

  Children’s Viewpoint

Like their parents, the children and adolescents we interviewed also wanted CLEAR communication with health care professionals. Context, or being viewed as a "whole person," was important to them. This need for context was simply stated by two sisters who wished that their pediatrician would talk with them "more about our life than why we are there." If children visiting their health care professional for a routine check-up value context, think of its importance for children with chronic or life-threatening conditions who may struggle to define themselves by something other than their illness!

   Truly active listening is crucial with children since developmental issues play a large role in their ability to express themselves. Despite the inevitable variations in development, children often communicate in powerful ways. Four-year-old Allan clamped his hands over his ears when a new otolaryngologist tried to examine him. His parents knew this was symbolic of their son's previous painful experiences with ear examinations, but the physician missed Allan's cue and, instead, chastised him for not being ready for the examination.

   Empowerment was a key theme with the children we interviewed. A sense of control allows children to deal with painful procedures and with illness and chronic conditions. One elementary-school boy told us that he likes to know when a shot is coming. Why? So he can whistle! Adolescents we interviewed were even more vocal about empowerment. A teen who had been hospitalized for reconstructive jaw surgery advised other teens to "know what they're doing and stick up for yourself."

  Advice and reassurance were also important parts of the communication process for children and, undoubtedly will be affected by age and personality While a ten-year-old wanted to receive information about diet and exercise directly her five-year-old brother preferred that his physician talk with his mother "because if bad news is coming, I want to hear it from my mom."

 The "Ethics" of Communication

   As demonstrated by these examples, both parents and children need CLEAR communication from health care professionals. And, indeed, there seems to be little disagreement currently in the health care system about the importance of effective communication between patient/ family and professional. For example, there harve been several recent articles in professional journals focusing on the subject of communication. But what does it have to do with the "ethics" of health care? Why should it be discussed in a publication like Pediatric Ethicscope? At one level, effective communication is an ethical issue because it’s the right thing to do; it's "good medicine"; it's integral to the delivery of optimal care. When communication goes well, or is CLEAR, pediatric patients, their families, and health care professionals have better information. Patients, families, and professionals can develop relationships characterized by trust. Together, they can then make better decisions about care, treatment, and support.

         On another level, communication that has not gone well is sometimes a factor in cases that are brought to groups like the Institutional Ethics Forum at Children's National Medical Center. Miscommunication over time, when people do not understand one another, can lead to conflict (real or perceived) about action. In her lecture, Dr. Glover talked about times when the use of futility language "can polarize -or at least curtail further discussion, just when intensified communication is needed." Even if the issue is not futility, similar stalemates can occur and intervention will be needed. In such cases, an ethics service can play an invaluable role. When trust has eroded and perceived differences have spiraled out of control, an ethics consult offers a kind of "time-out" - a pause in the escalation of emotion and misunderstanding, another chance for each person to talk about what he/she believes, feels, and wants, A chance to try again for CLEAR communication.

 This family centered article on ethics and communication was written by Deborah Dokken and is part a larger conversation that Children’s National Medical Center addresses in their Fall issue of Pediatric Ethicscope. Log on to http://sris.org/prog/samples/cnmc/doctors/doc1g.htm to read more.