~An open perspective on healthcare~
Finding Felicity: A blog aiming to raise awareness for a patient’s autonomy, specifically for those suffering from Acute Myeloid Leukemia and type 1 diabetes. This site, albeit with a public health agenda, embraces the notion that raising awareness can be accomplished in tandem with any interesting writing, regardless of the topic. A Therapeutic Passage. A cultural segue to more serious issues.
Healthcare used to be a blind dictation given by the doctor. Patients knew little of their own demise or that of a loved one. “Doctor knows best,” used to be the prevailing attitude, where patients never presumed responsibility for knowledge of their conditions, treatment or prognosis.
Perhaps fear kept patients wary from adventuring further into this often morbid realm. But over the past 15 years, medicine has entered a ‘revolution in learning,’ one driven by the internet, the new #digital age, a world where information is at the fingertips of not only health professionals but also patients and families1.
The Doctoral profession will never return to medical paternalism or authoritarianism from whence it came. With this new open-knowledge pedagogy, more defined patient ethics have emerged, namely autonomy and the intentional empowerment of the patient.
According to Philip Hébert’s book Doing Right, read throughout the world over by medical trainees, autonomous patients are capable of exercising deliberate and meaningful choices where they are well-informed2.
“Words which burnt like surgical spirit on an open wound, but which cleansed, as all truth does,” –Laurence Durrell
Awareness not only empowers patients, lessening anxiety and morbidity, it also helps prevent unnecessary illness and disease progression. Awareness brings hope and can spur conscious testingand early detection. It also incites discussion on uncertainty. According to Hébert, informing patients about the ambiguities and the range of available treatment options allows them to appreciate the complexities of medicine, to ask questions, to make informed and realistic decisions, to better be prepared for the dire prognosis and to assume responsibility for their decisions3. Finding Felicity embraces an informed approach to healthcare, one where patients are empowered by their knowledge and awareness of illness. Autonomous individuals embrace awareness: Finding Felicity’s mantra.
Having a diabetic family member on dialysis three times a week, we cringe at the stories she tells. Stories of nurses refusing to answer her questions and of doctors not wanting to explain their choices …choices made for her own body. Stories of practitioners not listening to her even when she actually knows her body better than anyone, stories of arguments and unnecessary conflicts over pride, opinion and preference. All these ethical issues are being addressed currently in new Medical school curriculum where patient-physician relations are being perfected. The tide turns slowly.
“Patients should be told the truth because of the respect due to them as persons; the truth can empower them and encourage authenticity and autonomy,” –Philip Hébert
Empowering patients is one of the central goals of modern medicine, just as important as amelioration of suffering and the prevention of premature death. According to one study, patients felt they had the right to know everything about their condition, and some were angry when asked why they wished to know, “Do I have to explain why? Just so I know.” 4
Even when information cannot be “used” by patients, they may still wish to know. Similarly, in health awareness, ‘for-interest’ information still empowers the public who may still wish to have it. This disclosure encourages valid voice and supports authentic hope. The medical revolution supports this simple and straightforward enlightenment of people to the qualms of their very own bodies.
So does Finding Felicity. We stand for hope, realism and awareness. Empowering people through awareness on Acute Myeloid Leukemia and other blood cancers.
Thanks for sharing in our enlightenment!
- T. Fergusin, E-patients: How They Can Help Us Heal Healthcare (San Francisco: Creative Commons, 2007). Available at:http://www.e-patients.net.
- S. Hoffman, Ending medical complicity in state-sponsored torture, Lancet 378 (2011): 1535-7.
- J. Cheng, Confronting the social determinants of health—obesity, neglect, and inequity, N Engl J Med 367 (2012): 1976-7.
- Superintendent of Family and Child Service v. RD and SD (1983), 42 B.C.L.R. 173-87 (B.C.S.C.).