We often put a lot of effort into making important decisions for our lives. We ponder things like: “Should I apply for this new job?”, “Should I buy this car?”, or maybe even “Where should we go for our next holiday?”
We often spend lots of time gathering information on our options. We seek advice from loved ones, ‘sleep on it,’ and weigh up the pros and cons of each option to find out what is the right decision for us.
Interestingly, many of us don’t put the same effort into making decisions regarding our healthcare.
Many patients can feel overwhelmed when presented with information by their healthcare provider. Some patients report that there was not enough or too much information or that the information given to them was just not applicable to their situation. All of a sudden, making a decision – something we do hundreds of times a day – becomes ‘tricky business.’
The rise of shared decision making
More and more decisions in healthcare are becoming what researchers call ‘preference-sensitive.’ This means that there is no single best option from a medical point of view. Each option has different pros and cons which patients may value differently.
Thus, it has been argued that patients should be involved in decision making regarding their care, to the extent they desire. For example, the slogan “Nothing about me without me” has been on many activists’ lips. The catchphrase was adopted by participants from 29 countries at a 1998 Salzburg global seminar. The seminar aimed to develop ideas regarding how to improve the quality of healthcare by involving patients. Numerous initiatives have been founded globally to support this idea of shared decision making. Researchers, patient advocates, and policy makers all over the world have been trying for decades to improve patient involvement in healthcare decision making. Despite these efforts, researchers still argue about how to best help patients make decisions regarding their care.
Sandy has to make a difficult healthcare decision …
To picture this a bit better, I’d like to introduce to you Sandy. Sandy is 40 years old and has two children. Her mother died of ovarian cancer and her doctor told her that she has an increased risk of developing ovarian cancer. She is offered to have her healthy ovaries removed to reduce her cancer risk.
Sandy fears her risk of ovarian cancer, as she knows that ovarian cancer is often detected at a late stage and survival rates are low. Her vivid memories of the way her mother suffered from this dreadful disease contribute to her fear of developing cancer herself.
By increasing our understanding of why and how patients decide on their care, we can help patients manage the ‘tricky business’ of healthcare decision making.
While having the surgery is likely to reduce her cancer risk, it does come with many side-effects – including surgical complications, such as bleeding or infections, and early menopause with its associated symptoms, such as depression, anxiety, risk of cognitive impairment, osteoporosis, or hip fracture.
Sandy also wonders whether she will still feel like a woman if she has her ovaries removed or whether her sexuality may be affected. She is concerned that the long-term effects of the surgery could impact her relationship and intimacy with her husband.
So, what to do? Sandy speaks to her doctor who gives her numerous facts and figures. However, she is the one who ultimately has to decide whether to undergo the surgery or not. She feels overwhelmed and wishes there was more support with making this decision that will ultimately affect her life and well-being.
How to help patients like Sandy
We interviewed women, like Sandy, who had to decide whether to remove their healthy ovaries to reduce their risk of developing cancer. In this paper, we report on how and why these women made their decision. We use a theoretical framework to help guide our research and develop suggestions for how we could better assist women with making difficult healthcare decisions.
We also look at how women use different strategies such as statistical information, ‘gut feeling,’ and their own experiences to decide what is best for them. We explore what they are struggling with most and how doctor-patient communication in this area could be improved. By increasing our understanding of why and how patients decide on their care, this paper provides an important step towards helping people like Sandy manage the ‘tricky business’ of healthcare decision making.