Empowering patients with the right knowledge.
It is time to move forward from a largely lip service to patient-doctor relationships to an actual relationship that addresses the gap between healthcare professionals and patients/carers.
I first thought of this project’s title as “ask your doctor” but I liked the “patient examines the doctor” title which I borrowed from a chapter title by Anatole Broyard in his greatly entertaining book “intoxicated by my illness”.
As I addressed in skin in the game there is a massive gap between doctors and patients in terms of knowledge, information transfer and conflicts of interest that make the doctor-patient relationship largely a skewed one, of course towards the doctor.
Patients do not usually know much about their illness, especially an acute and devastating disease like cancer. They are battling with their own survival and the shadow of death is suddenly flirting much closer to home than they would have thought. It's not surprising, if they are not in the right state of mind, that they don't scrutinise their doctor for answers. Being occupied with your own survival, your career, your livelihood, and your loved ones, is not the right place to start studying details about cancer that your surgeon has been studying for decades.
I can only imagine how a patient with such a serious diagnosis feels when they come to me as a complete stranger and simply has to trust me! In a clinic visit that lasts 30-45 minutes at best they are required to know what is happening and ask questions. It is just not enough. Prolonging the clinic visit for longer is not only inefficient from a healthcare point of view but also won’t help the patient either. They need to have some specific knowledge about their respective disease that they could ask and get detailed answers from their surgeon during this limited clinic time. A specific knowledge of what could happen, not only in the short term but also how a decision they are making now could affect their quality of life in the months or years to come.
Understandably a patient wants to survive the ordeal first but once this is achieved, they could be left with a devastating long term functional complication like for instance a permanent stoma, a stoma complication or disfiguring chronic wound.
The patient would never and need never have the same knowledge and experience as the surgeon, but to equip the patient with the right and specific questions that could address the above, would narrow the information gap to a degree that makes an informed consent an effective process rather than a formality.
How could this be achieved?
A good start is to use the experience of past or recent patients to inform the decision of current or prospective patients. There is no one better placed to advise a patient than another patient. I remember one of my patients eloquently cutting doctors down to their right size when she compared us according to Maslow's hierarchy of needs. Doctors and nurses, she said, give us the basic needs, eating, drinking, peeing, pooing, and pain relief. Other fellow patients, however, give us the psychological needs by sharing their experience and feelings with us.
So, to take this forward we would need to develop a readable short document of all the potential questions that are pertinent to the patient and provide it to prospective patients so they would be better equipped when they meet with their doctor in the next and important clinic visit about management/surgery.
Doctor are largely good people. But they are also humans, they could forget, they have their own potential dramas at work and home. However, we could use the invaluable expertise of doctors to help shape this document further by reflecting on their own previous patients and providing advice to patients. Specialist nurses are invaluable in this regard as they customarily maintain a closer relationship with patients than the consultant.
When you are admitted as an inpatient then there is already a document developed for you to give you power and control over you care while inpatient.