Most communities will have one, two, or more campaigns running to raise money for a child with a health concern. It might be a cancer, a chronic disability or a neurodegenerative condition. The campaign is not for a charity which supports children with the condition in general, or research into the disease process, but for the specific child to go somewhere to receive some therapy.
Is this a difficult situation to address with evidence-based medicine?
Professionally, if EBM is about combining clinical research, clinical expertise and patient/family values then we can do this. We could look for evidence for the intervention (for example swimming with dolphins ) and discuss this with a family. We could offer them experience and access/referrals to ongoing clinical studies, and we can support them in their decisions.
Under all this though, I feel that understanding the dilemma not as a medical problem but as an act of pilgrimage may be more helpful. While sometimes the objective has a treatment that has a demonstrated value to it (for example, proton beam radiotherapy for some cancer therapies, with reduced side effects but probably equal efficacy) I think is more usually a underpinned by a miraculous hope (phase I studies or unpublished / uncompared procedures or interventions). What may well be the ‘treatment’ is not the drug, surgery, dolphin or device, but the support and acknowledgement of the community around the family.
Pilgrimage has a long and honorable history and should be acknowledged by us all.
– Bob Phillips