My plan was to storm the health care world when my degree is finished – but I thought, why wait? I have proposed this abstract for the annual Canadian Bioethics Society conference this spring. The theoretical presentation spots are hotly contested and my bioethics colleagues are inarguably more qualified than me–but hey, who knows. My big idea needs a place to breathe.
Solving the Power Imbalance: A Bioethics Solution For Patient Empowerment
Patients and their families are under-equipped to face the challenges of healthcare decision-making, especially as ‘patient-centered care’ is increasingly requiring patients to make time-sensitive, high-consequence medical decisions for themselves.
A review of current efforts to better support patients reveals offerings that fall into one of two camps: psycho-social support, or medical information/training for self-care.
In my session, I will present an argument that supports a third path towards improved patient empowerment: public bioethics education and a transformed clinical practice to improve patients’ understanding of not just their health status, but their predicament. The predicament is the situation arising from the power and knowledge imbalance between physician and patient, at a time when the patient must make time-sensitive decisions based on information that has been condensed, interpreted, and re-packaged by the physician.
Evidence-based
Through literature review, case review and patient narrative compilations, I will build a case that:
- illustrates the power and knowledge imbalance between physician and patient;
- demonstrates how this imbalance is systemic and perpetuated by the institution;
- links this imbalance to a compromise of informed consent, and;
- questions the notion that bioethics professionals, employed by the institution, are sufficiently leveling the imbalance on behalf of the patient.
Why this is important
- Public interest: All of us will, at some point, become patients or caregivers – whether due to trauma, disease or aging. For most of us, this will be a new experience. And for most of us, we will have only institutional healthcare’s perspectives to guide us.
- Bias and influence: Patients are not taught how to be advocates. The average patient is not trained to understand risk; to debate complex ethical issues; to uncover truth behind sensational media stories; to recognize non-medical influences in decision-making including personal and cultural bias, institutional politics and issues of resource allocation.
- Transparency: Long before a recommendation reaches the patient, the healthcare team has thoroughly reviewed the issues at hand. They have the benefit of multi-disciplinary consultation, case history, legal counsel, clinical best practice and access to current research–all of which is then interpreted and communicated by the clinicians to the patient. The patient is not aware of the debate behind closed doors, and does not receive the benefit of the dialogue.
- Checks and balances: Bioethics consultation is often provided to patients and families as a problem-solving intervention, when there is conflict between patient and physician/institution. If everyone agrees, there is no problem to solve. However, a patient doesn’t know what she doesn’t know–ethically questionable decisions can go unchallenged.
Proposed solutions
I propose that the bioethics profession should apply itself to addressing these gaps, through publicly-accessible programs and through a transformation of clinical practice. These recommendations will be outlined in the session.
OMG…this is friggin’ awesome. PICK HER! PICK HER!!
I think this is an excellent starting point for a really complex set of issues. I hope plenty of
physicians will weigh in; I’d like to hear their concerns, though the context of the medical system in Canada is quite different than in the US.
Jennifer, this work is phenomenal, awesome, fantastic, superb, foundational… I will say prayers for you to be picked every single day! I cant tell you how many times those thoughts came to me as I sat with clinicians or the patients. If there is anything I can do to help, in any way ( not sure how) please let me know. I am cheering you on all the way. And I love the fact that you are doing this all before you finish your degree, I think Claire your first replyl said it best THIS IS FRIGGIN’ AWESOME! GOOD FOR YOU!
Thanks so much Maria! Really appreciate the support…
An update: they accepted the proposal! I’ll be presenting this as is a ‘theoretical’ session – 30 minutes to build the case, then 15 minutes Q&A.
So excited to think that smart people think this is important :)