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Lost in translation: Building health literacy and meaningful patient partnerships

Photo: Professor Dawn Stacey
Imagine you’re an elderly person in hospital, confused and in pain. You try to get up to the toilet but the barriers on your bed are raised. You try to climb over them and fall, injuring yourself.

Professor Dawn Stacey believes preventable and common situations like these are the result of decisions being made on behalf of patients without consultation.

“When people come into hospital and are assessed for fall risk they often aren’t engaged in decision making around mitigation measures like barriers, which means that they will be less likely to comply with restraints,” she explained.

“If you engage a patient in decision making from the start you can help them understand why they are at risk of falling and come to agreement on a shared plan for preventing falls.”
This is a small part of Professor Stacey’s battle with traditionally paternalistic healthcare systems.

Professor Stacey, from Ottawa, Canada, is a visiting professor at Deakin University’s Centre for Quality and Patient Safety, part of the School of Nursing and Midwifery.

In Canada she’s a Research Chair in Knowledge Translation to Patients and a professor at the University of Ottawa.

Her research looks at how healthcare providers, particularly nurses, can engage patients and their families to be partners in their own healthcare.

“How can we change the culture to value the patient’s voice at all levels of the process? That’s the kind of question we need to address from day one in nursing school,” she said.

“Patients should be properly engaged in decision making around surgery and procedures, decisions about level of intervention, and end of life care.”

Professor Stacey said Australia, like many comparable countries, still had a long way to go when it came to patients as partners in their decision-making and care.

“Globally, nobody does this well yet. Lots of countries have client-centred engagement, but this is not the same. What we’re talking about is actually working with the patients.

“Revisions to the Australian Safety and Quality Health Service Standards mean hospitals now need to be thinking about how they engage consumers at an individual level – involving patients in their health care decisions and also improving health literacy.”

For Professor Stacey that means actively inviting patients to be partners in their care, for example setting shared goals for the day.

“The nurse’s role as part of the interprofessional team goes beyond education to helping patients understand their options, what is important to them, so they are prepared for the discussion with their doctor,” she said.

Professor Stacey said a simple way to engage patients in decision making was to suggest they ask three questions:
1. What are my options?
2. What are the benefits and harms of these options?
3. What are the chances of these occurring?

Professor Stacey tells the story of a woman going in for a meeting with her radiation oncologist to discuss treatment options for endometrial cancer after surgery. She needed to decide what treatment option to take.

“The doctor told her that surgery would halve her chance of recurrence, but we knew that only meant going from four out of 100 without radiation treatment to two out of 100 with treatment in the next five years. With treatment, there were possible impacts on quality of life, including incontinence issues.

“The woman asked the doctor what he thought she should do, and the doctor explained it like this: ‘If you were my mother, she worries a lot and the thought of the cancer recurring would stress her a lot and she would rather know she had done everything she could to stop it.

“But if you are like my wife, she isn’t someone who worries and she wouldn’t want to have post-surgery radiation when there’s still a chance that the cancer could come back anyway.’

“So he asks: ‘Who do you think you’re more like, my mother or my wife?’

Professor Stacey said this was a great example of a values clarification exercise that helped people consider what was most important. 

“This is shared decision making. She has been told her options, the benefits and harms, the chances of them occurring, and helped to clarify her values to achieve an informed decision based on her values.”

Professor Stacey said this example showed it usually wasn’t about giving the patient as much information as possible.

“In nursing training the focus is often on giving information, but a brain dump is not the best approach, patients can become overwhelmed,” she said.

“I once heard a patient after a conversation with a clinician say: ‘I felt like I was trying to take a drink on the end of a fire hose.’

“But part of the art of communication is to know what information to give and when. It’s about an exchange, tailoring that information for the individual person – you need to have some sort of dialogue and interaction around that information.”

Professor Stacey said patient involvement in hospitals shouldn’t start and end on the wards or in the consulting rooms either.

“We need patient advisory teams at hospitals, they should be involved in governance and decision making at higher levels too,” she said.

“Further to that, patients should be involved in meaningful research, from choosing the research question to disseminating the research findings.” 

Professor Stacey said research supports the need to engage patients in direct care, organisational governance, on research teams, and at health policy levels. 

“In trials evaluating interventions to support patient participation in healthcare decisions, patients have improved knowledge, improved realistic expectations of outcomes, improved level of involvement in interactions, and improved understanding of what is important to them,” she said.

“Patients who feel a great sense of control have better health outcomes and it may even reduce costs.”

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