Against the ruin of the world, there is only one defense — the creative act.
Disengagement: The Art Of The Beat Generation, Kenneth Rexroth 1957
Most don’t consider creativity important or essential in treating complex patients. But this decisive act is the true measure of providing value for these patients.
It is easy to slip into the routine of the “one size fits all” guideline. Follow the evidence or as closely as you can. However, with rare diseases, there is little or no evidence.
So the “Cinderella strategy” of slipping the same shoe onto each patient, to see if it fits, does not work with complex patients.
What seems to be trending is the “personalized” approach to patient care. That is a value worth pursuing. However, it requires a plan with focus, a team with determination and more importantly a creative act to deliver highly individualized or personalized medicine.
That is what complex patients with rare diseases should be asking for from their doctors.
The patient has a right to frame the conversation with the doctor(s) in terms of the need for “personalized” solutions, especially if the patient is complex.
The patient should repeat Rexroth’s statement- Against the ruin of the world (viz. a rare disease), there is only one defense- the creative act- as the mantra for addressing the complex patient’s real needs.
Here Is A Case Study Involving A Creative Act(s):
H.L is a 49 year old male who presented with a rare form of cancer. Because the cancer was rare there was little published information about how to treat the cancer. H.L. and his family were interested in going as deeply as possible to find a solution.
Rupert Case Management (RCM) was retained by this very knowledgeable family. Several experts were identified based on their understanding of the basic science of this rare type of cancer. They understood the pathways of this cancer. Their knowledge helped in selecting treatments.
Next, the family had sought help from a research company. The research company implanted the live cancer cells from H.L. into mice. The tumours grew in the laboratory mice.
Another research company did the cancer genomics. This company did an analysis of the DNA of the cancer cells. If there are mistakes or mutations in the cancer’s DNA, then this can sometimes yield actionable targets. These targets correspond with drugs developed specifically for these targets.
With information about actionable targets and with the suggestions from the expert panel, five to seven drugs were chosen to treat the mice. After being treated, the mice were studied to see which drug(s) were most effective. The assumption being that the personalized care would improve H.L.’s outcome.
Most often, guidelines do not work with complex patients with rare diseases.
The patient with a rare disease must persist in requesting a creative act from his/her care providers.
Many complex patients find that it is best to work with an advocate who can represent their interests in the design and delivery of the personalized care plan.