HIE Awareness: How Can Care be Improved?

Oh goodness, that is a loaded question! I have more than a few suggestions about how to improve the care from our medical community, but I will try to pare them down to the most crucial points; those that could help support our families in more constructive ways.

  1. Name the diagnosis!  There is a saying in the special-needs world, “Always presume competence.”  This means, until proven otherwise, assume a person has the ability to think, learn and understand the world around them.  Please apply this same principle to we as special needs parents.  Presume that we have the capacity to understand our child’s condition and the medical terminology that accompanies it, if only we are given the opportunity to learn.  Give us as much information as you can so that we can spend time exploring treatments options, connecting with other families and getting the support we need.  Knowledge is power so please share yours with us!

2. Believe parents!! I cannot tell you how many times I’ve poured my heart and soul out to a provider, only to be completely and totally dismissed.  From severe sleep deprivation, to seizures, to equipment needs, I have personal experience with being dismissed by medical staff, despite the incredibly valuable perspective I have on the situation at hand.  This has got to stop.  Physicians, nurses, please hear me. We respect that you went to school for a very long time to earn your higher degrees.  We respect that you may have years of clinical experience and a deeper scientific understanding of the human body than we.  IN RETURN, we would like to ask you to respect us as parents of medically complex children.  We also have years of study that would easily amount to a degreed major in OUR CHILD.  WE are the supervising physician for our family and so the information we give to you should be received with respect and faith that it is accurate and valuable data.  

3. Treat us like the living, breathing, human family that we are.  I know that in the cattle drive medical model of our world, few physicians have personal relationships with their patients anymore.  My family is just another one of the hundreds you see for 15 minutes at a time each week.  I honestly don’t expect you to care about us in the way that we wish you would.  But I also do.  I wish you would understand that we are at your mercy for our care.  When we tell you there is a problem we need you to, first, believe us and then invest yourself, at least, far enough to help us solve our issue.  When our providers remain stoic and detached, it makes us feel like we are just another cog in the broken wheel of medicine.  Patient #58532034349, diagnosis, brain injury.  Next.

4. Please know that when you invalidate or do not listen to what we are saying, you are eroding the trust within our relationship.  Being talked down to, dismissed or otherwise disrespected by medical staff is behavior that is far outside the realm of professionalism.  So, stop.  Take the time to explain things to us if you feel we are failing to understand them. Answer our questions instead of mocking us. Consider our opinions and ideas before dismissing them in preference of your own. Do you know why we turn to Google doctoring?  Because we have no other choice.  We don’t have a working relationship with our providers and so, often, we are left to stumble through things on our own, with half knowledge and improper support.

5. See the interconnectedness and interdependence of my child’s care needs. We live under a medical model where each organ system is parted out to a different specialist. The gastro treats the gut, while the neuro treats the brain and the pulmonologist treats the lungs. The massive flaw in this system is that none of these providers work as a team. We need you to be open to talking with other subspecialties, working together to create a cohesive plan that takes the other disciplines into account. As it currently stands, the burden of this coordination of care falls on the already overloaded shoulders of parents. Can we please reincorporate the concept of holism to the practice of medicine? “Holism: the idea that various systems should be viewed as wholes, not merely as a collection of parts.” It’s really a very simple and obvious concept, isn’t it?

5. Understand that, while it is easy for you to prescribe a treatment plan, WE are the ones who must carry it out and deal with the consequences.  For example, when you tell us to wean a medication for sleep because you don’t like writing prescriptions for controlled substances, but don’t put any other supports like night nursing in place, it demonstrates an obscene level of ignorance about what our family is about to go through.   The protocols written in medical books, or even learned on the job, are NOT TAILORED TO INDIVIDUALS.  So, stop using them like they are.  Realize that we are real families with jobs and responsibilities and other children to take care of.  Sometimes aggressive treatment plans completely negate these pieces of the puzzle. 

6. Support our family as a whole.  Our entire world revolves around the needs of our medically fragile warrior.  Their care will always trump everything else, simply because it must.  HOWEVER, that doesn’t mean that the rest of our needs are irrelevant.  If you are treating a medically fragile child, PLEASE make sure the family is offered any and all support you have access to.   This includes palliative teams, social workers, and in/out-patient support groups.  Good medical care is one part of healing and wellness and social/emotional care are equally important parts.

7. Please understand that we are trying to create a partnership with you.  You have valuable clinical knowledge that can help our child.  We have valuable real-life experience that can help you, help our child.  So, let’s work together to create an integrative care team that fosters trust, truth and the holistic care of a human being, above all-else.

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