Decisions, decisions… we make hundreds every day. Some are inconsequential; others are monumental with long lasting effects. Of all the decisions we make, among the most difficult are those that involve our health and medical care, particularly when we don’t really know enough about the options.
Dr. Dawn Stacey is a scientist, nurse and the Scientific Director of the Ottawa Hospital’s Decision Aids Research Group. She and her colleagues are committed to helping people in those stressful situations by developing easy-to-use, accessible and unbiased “decision aids.” Where there is no clear best option, these tools – including pamphlets, videos and interactive internet-based programs – guide people through the process of making an informed decision that takes into account their individual needs, preferences and values.
“Decision aids help people learn what options are available as well as the pros and cons of each,” says Dr. Stacey. “Patients are then better prepared to ask questions, play a more active role in their treatment and know what they can realistically expect in terms of benefits and possible side effects.”
Decision aids go beyond regular health information material by encouraging people to examine the choices from a personal view, helping people “think about what's important to them, so they can give the doctor information that's relevant to their unique situations," explains Dr. Stacey.
Some decision aids are used by people on their own when preparing for an appointment with a clinician (doctor, nurse or specialist). These decision aids may provide useful questions to discuss at an appointment or help people think of questions that are important to them (1).
Briefer decision aids have been developed for the clinician and patient to use together during an appointment. They help focus the discussion on comparing the options and patients can share what is important to them. "When we talk to people they want to be involved [in healthcare decisions] but the system doesn't often allow for it. They get information at the doctors' office and don't know what to say or ask in response. [Patient decision aids] give them a tool and structure."
Higher quality patient decision aids are based on the best available evidence on the health issue and present balanced information that is not biased. When used by the patient on their own, they are meant to supplement – not replace – consultations with doctors (2).
Several individual studies support the use of decision aids for patients grappling with health decisions, including cancer treatments (3; 4). But are they really helpful when it comes to making difficult health-related decisions?
To answer that question, Dr. Stacey led a comprehensive systematic review of 105 randomized controlled trials involving more than 31,000 participants who were making decisions regarding treatment or screening (1). The trials compared the use of patient decision aids to usual care alone in order to determine the impact of these tools when making tough health-related choices.
What the research tells us
The review found that patient decision aids improve people’s knowledge about available options, so patients can weigh the benefits against the risks and potential side effects (1).
The results also showed that patient decision aids help people feel better informed and clearer about their personal values and priorities (1). Participants who used patient decision aids were also more likely to have more productive, meaningful communication with health care providers and to participate in decisions about their diagnosis and treatment – a factor that can lead to improved health and healthcare experiences (5).
Dr. Stacey is encouraged by the review’s findings, but says there are still challenges to overcome before people can more fully benefit from patient decision aids – for example, encouraging doctors to support their use. Some health professionals can be resistant to using decision aids, she says, and ongoing awareness campaigns and clinician training/education can help dispel some of the common myths, such as “It takes too long!” and “Patients don’t want to be involved!” and “Doctor knows best” (6). For example, a public awareness campaign in the United Kingdom focused on informing the public that they have a right to be involved in decisions about their health, with the slogan “No decision about me without me” (7).
If you’re facing a difficult decision about a potential treatment or procedure and can use some guidance, try searching the Ottawa Hospital Research Institute’s online inventory of decision aids. It includes more than 300 tools from around the world and is updated regularly. We'll soon be including the decision aids from this online inventory in the McMaster Optimal Aging Portal, so in the not-too-distant future you'll no longer need to go to a separate website. You'll be able to find relevant decision aids just by searching the Portal.
If you can’t find the patient decision aid you’re looking for, Dr. Stacey recommends you use the Ottawa Personal Decision Guide that is helpful for any health or social decision. Or begin by writing down the following three key questions:
1. What are my options?
2. What are the benefits and harms of each option
3. What are the chances of those occurring?
These questions will help guide your conversation with your doctor or health care team to arrive at the best solution for you (8).