We often assume that patients want to know everything about their condition, but we should challenge this assumption and think twice before imparting too much daunting knowledge to them, says Ian Dove
I sometimes hate the reality of knowing too much. As a nurse of 10 years recently diagnosed with arrhythmogenic right ventricular cardiomyopathy, there are some details I wish I didn’t know. Sudden arrhythmias, some of which are life-threatening, are par for the course with this condition.
Knowing that only 8.6% of people having out-of-hospital cardiac arrests survive and that no prevention strategies are available isn’t comforting. If you survive that, you can welcome the gradual slide into right-sided heart failure which could lead to breathing problems and eventually the need for home oxygen.
Pessimism aside, all of these facts bounce around in my head when considering my future or a large ectopic thuds in my chest – maybe my body reminding me not to get carried away.
This diagnosis has given me a new understanding of those patients who do not want to know the facts, figures and life expectancy. The ones we frown about after they leave, assuming they haven’t accepted their condition or are in denial. The reality is they may well have fully accepted their fate, but are not concerned with knowing the gory details, they just want to know how to move forward.
I appreciate both sides of the coin and have been guilty of judging people’s health challenges in the past. What I’m asking you to consider for your patients is “do they really need/want to know this? Will it improve their life?”
Health promotion and education is usually focused on informing the patient as much as they will allow. Is this blanket approach to information ideal?
We talk about individualised care in the NHS, yet we still have certain generic practices. If these assumptions go unchallenged, they could have a negative impact.
My own experience is different, as my medical knowledge came before diagnosis. As a research-based practitioner, I also did some of my own reading around, only to find out there is very little to be done about preventing deterioration in future. You cannot unlearn these facts and nor can your patients, so I ask you to be mindful of this in your next consultation. Low mood, anxiety or depression are common in people with long-term conditions. Our aim should be supporting these individuals instead of compounding problems with barren mortality statistics or stories of diminishing quality of life.
Despite the title of this comment piece, I do not believe in ignorance or withholding information. There can be a balance between communicating what a person needs or want to know and maintaining a positive outlook. Consider the difference between teaching your patients and coaching them, and for this we can learn something from the sporting world. Long-distance running coaches take their athletes through difficult and challenging experiences one step at a time. They break it into manageable chunks and feed their runners this knowledge while supporting them every step of the way. We can support and coach our patients through health challenges, one achievement or milestone at a time.
So the next time you find yourself in teacher mode, truly evaluate the person in front of you. What will benefit this individual and promote their health without destroying their future?
Ian Dove is lecturer in adult nursing, University of Bedfordshire.
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