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Do not take a back seat: Be engaged in decisions that affect your health and wellbeing

The Bottom Line

  • A large proportion of older adults and caregivers are not formally engaged in discussions about their own health and well-being.
  • Shared decision-making is a collaborative process whereby health and social care providers support individuals in making decisions informed by the best available evidence and what matters most to them.
  • Decision aids and decision coaches are among some of the tools and support that can help you.

Throughout life, we face many difficult decisions that can significantly affect our health and well-being. They can be about treatment and care options, finances, legal issues, driving, housing among others.

Some of these decisions can be particularly complex. For example, a recent systematic review identified 88 factors influencing housing decisions among frail older adults.(1) That means that choosing to stay at home or move to a senior’s residence (or somewhere else) can be influence by 88 factors. Another example is the process of being discharged from hospital to home (which is quite common for older adults). A recent study revealed that there are 52 moments when a choice must be made during the hospital-to-home transition period.(2-3)

We often take for granted that we will have a say in decisions affecting us. However, a large proportion of older adults and caregivers are not formally engaged in discussions about their own health and well-being. In a 2018 survey of 1,591 Canadians (of whom 939 had received health services in the previous year), only 36% of older adults said they were often presented with choices, and only 35% were often asked what mattered to them.(4)

How can we support older adults, their families and their caregivers to be engaged when it comes to matters that affect their health and wellbeing?

What the research tells us

Shared decision-making is a collaborative process whereby health and social care providers support individuals in making decisions informed by the best available evidence and what matters most to them.(5) Research evidence shows that shared decision-making leads to better care experiences and health outcomes for patients, as well as improving the use of healthcare resources.(6-9)

Many tools and services can support older adults, families and caregivers. For example, decision coaches are trained professionals who provide support to develop patients' skills in thinking about the options, preparing for discussing the issue in a consultation with their providers and implementing the chosen option.

But perhaps the most commonly used tools are the decision aids. These are tools that help patients, families and caregivers become involved in decision making around difficult issues. They provide information about the options and outcomes (based on the best available research evidence), and by clarifying personal values to help people navigate between the different options.

Systematic reviews found that decision aids can:
- help patients to be better informed with more realistic expectations;(10)
- clarify their values in order to make a choice;(10)
- reduce the overuse of unnecessary and ineffective treatment and care options;(10)
- increase the uptake of effective treatment and care options;(10) and
- reduce harms and increase patient safety.(6)

Find the support you need

Being engaged in decisions that affect our lives is not a privilege, it is a fundamental right. Think about the following steps:

1. Identify the decision to be made (in collaboration with your family, caregivers, and providers);

2. Find the right tools and support to take an informed decision that is aligned with your goals, your values, your preferences and the best research evidence available. Your providers may be able to offer you relevant tools and support such as:
- decision coach;
- a conversation guide (that you can use to ask questions to your providers); or
- a decision aid (if not, you can check the repository of decision aids by the McMaster Optimal Aging Portal in partnership with the Ottawa Hospital Research Institute, or the Decision Box hosted by Université Laval)

3. Have another conversation with your family, caregivers and providers to make sure that your goals, values and preferences are incorporated into the decision.

 

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Author Details

References

  1. Roy N, Dubé R, Despres C, Freitas A, Légaré F. Choosing between staying at home or moving: A systematic review of factors influencing housing decisions among frail older adults. PLoS One 2018; 13(1): e0189266.
  2. Kiran T, Wells D, Okrainec K, et al. Patient and caregiver priorities in the transition from hospital to home: results from province-wide group concept mapping. Under review 2019.
  3. Health Quality Ontario. Quality Standards - Transitions from hospital to home: Care for people of all ages. Toronto, Canada: Health Quality Ontario, 2019.
  4. Haesebaert J, Adekpedjou R, Croteau J, Robitaille H, Légaré F. Shared decision-making experienced by Canadians facing health care decisions: A Web-based survey. CMAJ Open 2019; 7(2): E210-e6.
  5. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: What does it mean? Social Science & Medicine 1997; 44(5): 681-92.
  6. Hibbard JH, Greene J. What the evidence shows about patient activation: Better health outcomes and care experiences; fewer data on costs. Health Affairs 2013; 32(2): 207-2014.
  7. Hamann J, Langer B, Winkler V, et al. Shared decision making for in-patients with schizophrenia. Acta Psychiatrica Scandinavica 2006; 114(4): 265-73.
  8. Shay LA, Lafata JE. Where is the evidence? A systematic review of SDM and patient outcomes. Medical Decision Making 2014; 35(1): 114-31.
  9. Veroff D, Marr A, Wennberg D, . Enhanced support for SDM reduced costs of care for patients with preference-sensitive conditions. Health Affairs 2013; 32(2): 285-93.
  10. Stacey D, Légaré F, Lewis K, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2017; (4): CD001431.
 

DISCLAIMER: Many of our Blog Posts were written before the COVID-19 pandemic and thus do not necessarily reflect the latest public health recommendations. While the content of these blogs identify activities that support optimal aging, it is important to defer to the most current public health recommendations such as social distancing and frequent hand washing. Some of the activities suggested within these blogs may need to be modified or avoided altogether to comply with current social distancing recommendations. To view the latest updates from the Public Health Agency of Canada, please visit their website.

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