BY BLYTH LORD

 I am not a medical provider but through CPN, I get to spend a lot of time with them. I think about their work a lot, primarily because how they do what they do has such an impact on the children and families they care for. I have come to believe that one of the hardest parts about being a medical provider caring for seriously ill children and their families must be the “meeting people where they are” part — the art of medicine part, as opposed to the science of medicine. The science or technical part of providing medical care – tests, charts, procedures, interventions – is more straightforward and face-value than the art or relational part – the communicating, listening, interpreting, holding.  CPN recently spent a few hours with 1st and 2nd year medical students, and one of them shared openly that right now he is just learning the medicine and he feels nowhere near equipped to wade into the relational aspects of providing care. Of course not – that comes with training, time and a lot of experience.

Nowhere is the ‘art’ of medicine more called upon than in the cultural and religious or spiritual sphere. We as family caregivers expect medical providers to bring into the room not just their medical minds but their humanity while leaving their personal biases out. We expect them to guide and advise us … by following us and our wishes.

I think this must be a very hard thing to learn to do and to do well. And as with all of the care experience, there can be consequences.

Questions we parents face in tending to our children and navigating their condition are inevitably informed by the influence of our culture and community, the beliefs we hold from our religion if we follow one, and the practices we engage in born of our spiritual orientation. These things influence what we value and how we make decisions.

Now, what happens when a family’s faith practice determines their preferences for care but those preferences run counter to what the nurse or doctor in the room thinks is right, and ‘right’ not just because of the medicine but right because of what that individual nurse or doctor believes in her own heart and head?  And what then happens to the family-provider relationship if the provider doesn’t effectively and sensitively well manage that difference?

Here at CPN, we’ve explored the issue of cultural and spiritual preferences only a very little bit. In a blog post, a mother shares how her family’s religion, with guidance from the Rabbi, would not let them remove life-sustaining support for their daughter and how challenging that was for everyone.  In a video, a mom shares how God’s voice advises on whether to give her son a tracheostomy.

We now want to further explore this important issue that is always present but often invisible. We are especially interested in how your family’s religious or cultural priorities influenced care decisions and how the medical care team did or did not support these priorities and decisions.

We invite you, the CPN Family Network, to send us a vignette about: 1) how what matters to you for your child is or was determined by your culture and/or spiritual background; and 2) if and how these values were shared with and supported or not by your child’s medical team; and 3) what impact all of this had on your experience.

CPN will compile all of the vignettes into a visual or written snapshot and share it with the Network, including both families and pediatric providers.

And if you give us permission, we will send your contribution for consideration to editors of a chapter being published in the country’s #1 academic textbook on Interdisciplinary Pediatric Palliative Care for medical providers, which is being updated. The family voice is being woven throughout and the authors are looking for a short contribution from a family about how their cultural or religious needs were or were not tended to throughout their child’s care and/or at end of life.

Here are some prompts that might get your thoughts and memories flowing:

1. As a parent, what were/are the most important things for your medical team to consider regarding your family’s culture, ethnicity, religious and/or spiritual identity?
2. Do you feel that your medical team took/has taken these parts of your identity into consideration throughout your child’s care? Why or why not?
3. What has your medical team done well in caring for these parts of your family/child’s identity?
4. What do you wish they did/would do differently?
5. Do you feel that your personal culture, ethnicity and/or the religious/spiritual part of your identity contribute to how you parent your child and/or make medical decisions for your child? How so? Can you think of an example that you would feel comfortable sharing?
6. What advice would you offer to your child’s medical team about how to care for these parts of your family’s needs and identity?

Email your vignette or story to us at connect@courageousparentsnetwork.org and we will share. (Please indicate if we may forward your vignette to the Textbook editors.) This is such an important topic and it will be invaluable to learn what your experience has been.