Today is American Thanksgiving, and a lot of parents of kids with MECP2 duplication syndrome or other conditions that make them medically fragile are thankful for the many excellent doctors that have helped their kids. Unfortunately, many parents have also told me about bad experiences that they have had with some physicians, and many others are struggling to find a good doctor for their child. So, this post is about some things to consider in finding the right doctor for a child or dependent adult who is medically fragile.
Before I get down to specifics, I need to make a couple of general statements. First, these considerations are just my opinion, but they are based on my good and bad experiences parenting two medically fragile children, 30 years of experience working with individuals with developmental disabilities as a nurse, interdisciplinary team leader, educator, director of a health ethics center. So, I am not just pulling these ideas out of the air, but nevertheless they are just opinions. Second, there are a lot of things to consider and no doctor will be perfect in every respect. So here are some ideas to think about.
Patient Familiarity. First, it is essential that you have a doctor who gets to know your child. No matter, how skilled and knowledgeable a doctor may be or how much he or she knows about your child’s syndrome, familiarity with your child as an individual is critical and requires seeing your child on a regular basis. Specialist consultants can play a very helpful role but finding someone you can stick with and who gets to know your child in good times and rough ones is really important.
Here are two great quotes from Sir William Osler, who was one of the founding professors of Johns Hopkins Hospital, and sometimes known as the father of modern medicine:
It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.
and this even better one.
The good physician treats the disease; the great physician treats the patient who has the disease.
Of course, I am not suggesting that knowing about the syndrome and its symptoms doesn’t matter, but familiarity with your individual child is more important.
There are several reasons for this. First, remember that there is a lot of variability among individuals with the same syndrome. One-size-fits -all solutions usually don’t fit any patient very well. Also, over the years, a medically fragile child gets a huge medical history record. A doctor seeing the individual for the first time or only on rare occasions can’t possibly be familiar with all of it. Having someone who has been through a lot of it with the patient helps a lot with this. Third, as far as MECP2 Duplication Syndrome goes there are some special things that doctors can learn about, but at this point the amount of this specialized knowledge is actually very limited. So you want some one who is willing to learn and willing to consult with specialists, but mostly you need someone who will be a regular doctor for your loved one.
Timely Access. Second, and equally important, your child needs a doctor that is available on fairly short notice. If you have to make an appointment a several days or even weeks ahead when your child is having a problem, this will not meet the needs of a medically fragile individual.
Backup. While having a regular doctor is essential, even the most dedicated healthcare professionals take time off. So, the ideal doctor becomes familiar with your child and personally sees him or her, but works in a practice with other doctors who will be available as backup when your doctor is off.
Listening. Good doctors don’t always agree with parents or do everything that parents ask, but they do listen to parents and take what they say seriously.
Practice mission. This may play out differently in different countries. For example, here in Canada and in the United States children typically are served by pediatricians, but when we lived in New Zealand, children were typically seen by family practice doctors and pediatricians were specialists who only saw children with complex medical concerns. However, this works where you are, the same general principle applies. Some practices are great for typically developing kids who are not medically fragile with complex needs, but not so great for kids with intensive needs. So, asking other people you know in your area about recommending a family doctor or pediatrician may not be helpful, unless you are asking people whose children also have similar complex needs. Unfortunately, a lot of parents of kids with complex needs don’t know other families with similar needs in their area to ask.
Often a good strategy to solve this problem is to contact a local organization such as The Arc or Cerebral Palsy association and ask them if they can put you in touch with some other families of kids with complex medical needs to see if they can recommend someone.
I have discussed this issue on this blog before
and it is a tough one to talk about. I will only briefly mention it here. It is important that your child’s doctor shares your values about your child’s quality of life and right to medical treatment. If you believe that in spite of medical challenges and severe disability, you child’s life is important and worth fighting for, it is important that your doctor shares those values…. and it is important that you know the doctors values BEFORE a critical life and death situation occurs.
So, these are some of the things to consider in choosing a doctor, no doubt there are others that can be added to the list.