Eileen and Daniel

Daniel was diagnosed with Myalgic Encephalomyelitis* (ME) at 19 years of age. After a series of travel vaccines (including a live vaccine) and  what Eileen (mother)  eventually discovered just before Daniel died at 21 years old (2012),that his physical body was still compromised by a fresh water parasite that he ingested from drinking water from a high school camping trip a couple of years before.  One of his classmates, as a joke, purposely gave Daniel the untreated water that contained Giardia Lamblia.

When Daniel was diagnosed he  was also transitioning from the paediatric world to the adult world, so he was referred to practitioners in the adult stream.  Daniel was then able to give consent for his own treatment.

*(ME is a debilitating, complex and chronic illness and not well understood in ‘mainstream’ medicine. )

Through his healthcare journey, Daniel’s challenges were met with challenges including:

• Assumptions and biases such as  being stereotyped – as a teenage boy, being an only child, of Asian descent, living in university residence and “missing home”;
• Not listening to the patient/caregiver family member (Daniel was very articulate; Eileen had a career in healthcare, and Daniel’s uncle is a cardiac thoracic surgeon);
• The need for ‘accepted ‘ medical ‘evidence’,  (ME was and still is not known or understood)
• Non willingness of most practitioners to learn of this diagnosis, thus no validation that his diagnosis was ‘real’ or even treatable

Daniel took action early in his illness:

• His own willingness for self help, reaching out and inquiring and receiving complementary therapies to alleviate debilitating pain, fatigue, unrefreshed sleep, no thermoregulation, crashes, and multiple other symptoms. He requested and did join ME support groups  and requested personal psychological/psychiatric support
• He requested that the physician who provided diagnosis speak at grand rounds so that other practitioners can better understand how to treat ME

Daniel wrote the following in his  journal,“What is worse that this illness is having a doctor* that doesn’t understand and acknowledge it”

* [applied to really any practitioner or regulated health professional]

At each health visit or consult, Daniel  shared detailed charting which included pain scores that tied to the meals, prescriptions, activities, etc. to pull out themes, trends, patterns  or ‘clues’ to help with his own care plan development. Eileen produced hard copied summaries and detailed records and centralized all notes from all health visits including alternative type of therapies Daniel received.

Eileen and her siblings created a toolkit for each health practitioner on Daniel’s inpatient care team,  outlining Daniel’s medical history that led to the diagnosis of myalgic encephalomyelitis and referenced and provided hard copies of relevant material that would be ‘respected’ i.e. from the Centre for Disease Control (CDD), Atlanta, in order that an appropriate care plan be developed.

(The World Health Organization, WHO and the CDD have already recognized/validated this disease.)

Daniel himself created 4 (four)  You Tube Videos to inform the world about his learnings from his diagnosis. (At the time You Tube was new in social media.)

Summary: 

• Importance in cultivating team partnerships
• Patient/caregiver, through lived experience is part of the healthcare team.
• Active listening, engagement and communication in a respectful and responsible manner with the patient/caregiver/family together with the interprofessional team is essential in designing a collaborative care plan.

Months before Daniel passed away, he encouraged Eileen, “Mommy, we have to get to the students!  (They are the  future!)

Eileen continues his legacy to this day. In addition to being an active member of Patients for Patient Safety Canada, she is a patient partner and health mentor  with the interprofessional teams at a leading academic, clinical and research hospital in Toronto.