How do I keep my child’s care in perspective, what are the ethical considerations?

Inherently there is an imbalance of power for parents in the hospital setting.

It’s important to remember that you are you are the expert on your child. You know what helps to comfort them, you’re paying close attention to what’s happening to your child on every level: physically, socially, emotionally, spiritually. You can tell when they are in pain, when they are afraid, sad, confused. You are your child’s first line of defense. All the medication in the world couldn’t replace your love, fierce dedication and vigilance. Follow your instincts as a parent, trust your gut, stay in your power as a parent- you know your child the best. David Browning, in his letter to the editor states:

Dear Sir
It is common in pediatric medical settings, as in the broader culture of medicine, to understand the healthcare disciplines as modes of professional practice, but uncommon for parenting to be acknowledged as a practice. Even in healthcare systems that routinely proclaim their family-centeredness, it is unusual for the knowledge and expertise of parents to be granted the moral weight and cultural respect connected to practice. Yet, parenting is indeed a practice, drawing from a rich storehouse of learning that includes observation, experiential learning, and the generational transfer of knowledge. Parents invest in their practices by adopting a range of learning strategies – seeking out mentors, learning collaboratively with peers, and reflecting upon their accumulated tacit knowledge. This investment is heightened in families of children with chronic illnesses and disabilities, given the higher stakes involved. These parents routinely become skillful at advocating for their child, navigating complex medical systems, and making complex, ethically challenging healthcare decisions. The strength and depth of this kind of parental practice is captured in the following account by a parent from our faculty team (MC), whose daughter recently graduated from high school.

When my daughter was one year old, I was told she would never have children of her own, go to college or live independently. All my dreams were destroyed in a twenty-minute office visit. That conversation was also the beginning of my becoming an expert, both in terms of understanding my daughter’s physical and developmental disabilities, and in terms of knowing her as a unique human being – a funny and courageous kid, talented artist, lover of animals, and the foundation of our family. Our clinicians understand some pieces of the puzzle; I understand many others. More and more, our relationships with the medical team are fueled by mutual respect. When that happens, I can relax a bit, knowing that my daughter will get what she needs from all of us.

In our work developing educational programs focused on difficult conversations in pediatric settings (Browning et al. 2007; Meyer et al. 2009), we have been committed to highlighting parental knowledge in a number of ways, including employing parents as medical educators. As a result, our thinking has changed markedly about the ways in which healthcare practitioners and parent practitioners can learn from each other and how to craft robust educational approaches to address the chronic and complex healthcare needs of children in the twenty-first century.

D. M. Browning, M. Comeau, S. Kishimoto
P. Varrin, E. Ward, A. Rider, & E. C. Meyer
Institute for Professionalism and Ethical Practice
Children’s Hospital Boston
One Autumn Street, Suite 416
Boston, MA 02215, USA
E-mail: david.browning@childrens.harvard.edu

References
Browning DM, Meyer EC, Truog RD, Solomon MZ. 2007. Difficult conversations in health care: Cultivating relational learning to address the hidden curriculum. Acad Med 82:905–913.
Meyer EC, Sellers DE, Browning DM, McGuffie K, Solomon MZ, Truog RD. 2009. Difficult conversations: Improving communication skills and relational abilities in health care. Pediat Critical Care Med 10:352–359.
Letters to the Editor 620

I want the doctors to provide me with the answers to what’s in my child’s best interest.

Medically, doctors can present treatment options for your child but those may not be what is best for your child or family as a whole. A clinical intervention that may seem to work in the moment may cause problems down the road. You are a critical decision maker in your child’s treatment, it’s your responsibility to keep the big picture in mind. Ultimately, you are the one who will have a lifetime to live with the decisions that are made so you best be informed as possible and participate in the conversation.

How can I help clinicians to see my child as a person and not just a patient?

Line your hospital room with pictures of your child, put them on doors, walls, make your hospital room a place where you want to spend time and fill it with items that comfort and are of interest to your child.