Improving the decision process about location of care with the frail elderly and their caregivers

Home care is a rapidly growing sector and this study laid the foundations of a national strategy to ensure that no one has to be alone in making the difficult decision of whether to stay at home or move to a care facility.

About the Project

One of the toughest decisions faced by older Canadians living with frailty is whether to stay at home or move to a care facility. Shared decision making is when, instead of making decisions for the patient, doctors share information about what the evidence says, and they talk about what’s important with the patient, and then make the decision together. In the case of older adults living with frailty in home care services, there are many health care workers involved, (e.g. doctors, nurses social workers). In this case, decisions should be shared by all the professionals involved with older persons along with his or her caregivers. Unfortunately, in this context, shared decision making rarely occurs.

We have designed a training program that teaches doctors and interprofessional teams how to share decisions with their older patients living with frailty, and tested one in Quebec City and one with an Edmonton home care team. This project tested the training program on a broader scale with 16 home care teams attached to community health centres across the province of Quebec, and compared the results with what happens when no one has completed the training. Home care is a rapidly growing sector and this study started to lay the foundations of a national strategy to ensure that no one has to make this difficult decision alone.

Project Team

Principal Investigator:

France Légaré, MD, PhD, CCFP, FCFP — Université Laval

Co-Investigators:

Sophie Desroches, PhD, RD — Université Laval

Serge Dumont, PhD — Université Laval

Pierre Durand, MD — Université Laval

Kimberly Fraser, PhD, MA, BN, RN — University of Alberta

Maman Joyce Dogba, MD, PhD — Université Laval

Louis-Paul Rivest, PhD — Université Laval

Dawn Stacey, PhD, RN — University of Ottawa

Knowledge Users and Partners:

Celine Allard — Centre intégré universitaire de santé et de services sociaux (CIUSSS) de la Capitale-Nationale

Danielle Benoît — Ministère de la Santé et des services sociaux du Québec

Henriette Bourassa — Caregiver Representative

Nathalie Brière — Centre intégré universitaire de santé et de services sociaux (CIUSSS) de la Capitale-Nationale

France Falardeau — Centre intégré universitaire de santé et de services sociaux (CIUSSS) de la Capitale-Nationale

Josée Gauthier — Consortium InterEst Santé

Sylvie Greco-LeMay — Ministère de la Santé et des services sociaux du Québec

Lise Roy — Association des proches aidants de la Capitale-Nationale

Tim Sutton — Centre intégré de santé et de services sociaux (CISSS) de la Gaspésie

Project Contact: France Légaré — france.legare@mfa.ulaval.ca

Key words: shared decision making; patient centred care; frail elderly; interprofessionalism; home care; caregivers; location of care; decisional needs; decision support

Publications & Presentations

Publications

Boland L, Légaré F, Becerra Perez MM, Menear M, Garvelink MM, McIsaac DI, Guérard GP, Emond J, Brière N, Stacey D. Impact of home care versus alternative locations of care on elder health outcomes: an overview of systematic reviews. BMC Geriatrics, 2017(17:20) DOI: 10.1186/s12877-016-0395-y

Garvelink, M.M., Ngangue, P.A., Adekpedjou, R., Diouf, N.T., Goh, L., Blair, L., Légaré, F. (April 2016). A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved OnesHealth Aff (Millwood). doi: 10.1377/hlthaff.2015.1375.

Garvelink, M.M., Emond, J., Menear, M., Brière, N., Freitas, A., Boland, L., Becerra-Perez, M.M., Stacey, D., Légaré, F. (2016). Development of a decision guide to support elderly in decision making about location of care; an iterative, user-centered design. Research Involvement and Engagement 2:26.

Garvelink, M.M., Freitas, A., Menear, M., Brière, N., Stacey, D., Légaré, F. (2015). In for a penny, in for a pound: the effect of pre engaging healthcare organizations on their subsequent participation in trials. BMC Res Notes. 8;8(1): 751.

Légaré, F., Brière, N., Stacey, D., Bourassa, H., Desroches, S., Dumont, S., Fraser, K., Freitas, A., Rivest, L.P., Roy, L. (2015). Improving Decision making On Location of Care with the frail Elderly and their caregivers (the DOLCE study): study protocol for a cluster randomized controlled trial. Trials 12; 16:50.

Adekpedjou R, Stacey D, Briere N, Freitas A, Garvelink MM, Joyce Dogba M, Durand PJ, Desroches S, Croteau J, Rivest L-P, Legare FEngaging Caregivers in Health-Related Housing Decisions for Older Adults With Cognitive Impairment: A Cluster Randomized Trial. The Gerontologist, gnz045, https://doi.org/10.1093/geront/gnz045

Presentations

Roy, N., Dubé, R., Légaré, F., Després, C. (June 2016). Factors influencing the housing decision of frail oder adults: a systematic review. International association people-environment studies (IAPS) annual conference. Lund/Alnarp, Sweden. (Oral presentation).

Adekpedjou, R., Stacey, D., Brière, N.,  Freitas, A., Garvelink, M., Turcotte, S., Légaré, F. (June 2016). Decision-making about location of care among the seniors and their caregivers: a cross-sectional survey. Knowledge Translation (KT) Canada Annual Scientific Meeting. Toronto, ON. (Poster presentation).

Roy, N., Dubé, R., Légaré, F., Després, C. (May 2016). Les facteurs influençant la prise de décision quant au choix de milieu de vie des personnes âgées en perte d’autonomie – Revue systématique. Journée de la recherche et de l’érudition au DMFMU. Québec, Québec. (Poster presentation).

Garvelink, M.M., Ngangue, P., Adekpedjou, R., Thiab Diouf, N., Goh, L., Blair, L., Légaré, F. (May 2016). Results of a mixed-methods knowledge synthesis on caregiver experiences of involvement in decision making with seniors: unmet needs and supports. Journée de la recherche et de l’érudition au DMFMU. Québec, Québec. (Poster presentation).

Adekpedjou, R., Stacey, D., Brière, N.,  Freitas, A., Garvelink, M., Turcotte, S., Légaré, F. (May 2016). La prise de décision des aînés et des proches-aidants concernant la localisation des soins des aînés: une étude transversale. Journée de la recherche et de l’érudition au DMFMU. Québec, Québec. (Poster presentation).

Roy, N., Dubé, R., Légaré, F., Després, C. (May 2016). Les facteurs influençant la prise de décision quant au choix de milieu de vie des personnes âgées en perte d’autonomie – Revue systématique. Journée de la recherche des étudiants de l’axe SP-POS, Centre Hospitalier Universitaire de Quebec (CHU de Québec) – Université Laval. Québec, Québec. (Poster presentation).

Adekpedjou, R., Stacey, D., Brière, N.,  Freitas, A., Garvelink, M., Turcotte, S., Dogba, M.J., Desroches, S., Rivest, L.P., Dumont, S., Durand, P.J., Fraser, K., Bourassa, H., Roy, L., Légaré, F. (May 2016). Decision-making about location of care among the seniors and their caregivers: a cross-sectional survey. Journée de la recherche des étudiants de l’axe SP-POS, Centre Hospitalier Universitaire de Quebec (CHU de Québec) – Université Laval. Québec, Québec. (Poster presentation).

Garvelink, M.M., Ngangue, P., Adekpedjou, R., Thiab Diouf, N., Goh, L., Blair, L., Légaré, F. (May 2016). Caregiver experiences of involvement in decision-making with seniors: a mixed-methods knowledge synthesis. Journée de la recherche des étudiants de l’axe SP-POS, Centre Hospitalier Universitaire de Quebec (CHU de Québec) – Université Laval. Québec, Québec. (Oral presentation).

Garvelink, M.M. (April 7, 2016). A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones. Health Affairs Briefing: Patients’ and Consumers’ use of evidence. Washington, DC. (Oral presentation).

Adekpedjou, R., Stacey, D., Brière, N., Freitas, A., Garvelink, M., Turcotte, S., Dogba, M.J., Desroches, S., Rivest, L.P., Dumont, S., Durand, P.J., Fraser, K., Bourassa, H., Roy, L., Légaré, F. (September 2015). Decision making outcomes about relocation among the frail elderly and their caregivers: a cross-sectional survey. 3rd Annual Technology and Evaluation in the Elderly Conference on Improving Care for the Frail Elderly. Toronto, ON. (Poster presentation).

Emond, J., Garvelink, M., Menear, M., Brière, N., Boland, L., Becerra-Perez, M.M., Stacey, D., Légaré, F. (September 2015). Development of a decision Aid to support frail elderly in decision making about location of care. 3rd Annual Technology and Evaluation in the Elderly Conference on Improving Care for the Frail Elderly. Toronto, ON. (Poster presentation).

Boland, L., Menear, M., Becerra-Perez, M.M., Garvelink, M., Légaré, F., Stacey, D. (September 2015). Health impacts of living at home versus alternative locations of care for the elderly: Preliminary results of a systematic umbrella review. 3rd Annual Technology and Evaluation in the Elderly Conference on Improving Care for the Frail Elderly. Toronto, ON. (Poster presentation).

Garvelink, M., Emond, J., Brière, N., Menear, M., Stacey, D., Légaré, F. (July 2015). Supporting the frail elderly in decision making about location of care; development of a decision aid. Joint International Shared Decision-Making and International Society for Evidence-Based Health Care Conference. Sydney, Australia. (Poster presentation).

Garvelink, M., Thiab Diouf, N., Freitas, A., Légaré, F. (July 2015). Interventions to improve involvement of caregivers in decision making with the elderly (a mixed methods knowledge synthesis). Joint International Shared Decision-Making and International Society for Evidence-Based Health Care Conference. Sydney, Australia. (Oral presentation).

Garvelink, M.,  Emond, J., Brière, N., Menear, M., Stacey, D., Légaré, F. (May 2015). Supporting the frail elderly in decision making about location of care; development of a decision aid. Précongrès : Journée de la recherche et de l’érudition au DMFMU. Québec, Québec. (Poster presentation).

Menear, M., Garvelink, M., Boland, L., Becerra-Perez, M.M., Emond, J., Brière, N., Stacey, D., Robitaille, H., Légaré, F. (May 2015). Caregiver involvement in a randomized controlled trial of shared decision making implementation in interprofessional home care services for seniors. Knowledge Translation Canada (KT Canada) Scientific meeting. Halifax, NS. (Poster presentaiton).

Garvelink, M., Emond, J.,  Brière, N., Menear, M., Stacey, D., Légaré, F. (February 2015). Development of a decision aid to support frail elderly in decision making about location of care. 2nd Annual Montreal Postdoctoral Research Day, Concordia University. Montreal, Québec. (Oral presentation).

Becerra-Perez, M.M., Emond, J., Boland, L., Brière, N., Garvelink, M., Freitas, A., Thibéaut, C., Stacey, D., Légaré, F. (October 2014). Location of care impact on frail elderly and caregiver health outcomes: preliminary results of an umbrella review of systematic reviews. Journée Scientifique du Centre Hospitalier Universitaire de Québec (CHU de Québec). Québec, Québec. (Poster presentation).

Garvelink, M., Emond, J., Becerra-Perez, M.M., Boland, L., Brière, N., Freitas, A., Thibéaut, C., Menear, M., Stacey, D., Légaré, F. (October 2014). Development of a decision aid to support frail elderly in decision making about location of care. Journée Scientifique du Centre Hospitalier Universitaire de Québec (CHU de Québec). Québec, Québec. (Poster presentation).

Becerra-Perez, M.M., Emond, J., Boland, L., Brière, N., Garvelink, M., Freitas, A., Thibéaut, C., Stacey, D., Légaré, F. (September 2014). Location of care impact on frail elderly and caregiver health outcomes: preliminary results of an umbrella review of systematic reviews. 2nd Annual Technology and Evaluation in the Elderly Conference on Improving Care for the Frail Elderly. Toronto, ON. (Poster presentation).

Rationale, Hypothesis, Objectives & Research Plan

Rationale: There is evidence that decisions that are shared reduce uncertainty and regret. But health professionals often make decisions for the elderly without taking their values and preferences into account. Health professionals can be trained to share these decisions, but there is little evidence about how well such training works.

Hypothesis: The training of health professionals will increase the involvement of elderly people and caregivers in the decision making process about moving, and reduce uncertainty and regret.

Objectives: To evaluate the impact of the training of home-care teams on their frail elderly patients and their caregivers.

Research plan: We investigate whether a shared decision making training program using an interprofessional approach (involving all the professionals in the team) will improve this decision process. The training consists of an online tutorial, a workshop, and a decision guide. We are conducting a trial in 16 health and social service centres (HSSCs) in the province of Québec. Participants are (1) home care teams providing services to the frail elderly, (2) the frail elderly receiving the services and (3) caregivers of the frail elderly with cognitive impairment. Teams in eight HSSCs received the training (trained group), and teams in the other eight did not (control). After the trained group have completed their training, we will recruit the frail elderly and caregivers from all HSSCs who made the decision about moving. We will measure their participation in the decision making process, their uncertainty during the decision-making process, and their regret afterwards. We will compare results from those cared for by the trained group with those cared for by the control group.

Communication to Patients

Title: Deciding on housing options – Let older adults living with frailty and their caregivers get involved

Key Findings:

  • Older adults with trouble living on their own may need to consider moving into a nursing home; however, the decision to do so is complex and should involve the older adult as well as their family/friend caregiver.
  • We gathered studies about older adults and housing from all around the world. We found that living in a nursing home is not safer than staying at home. This means that when older adults are deciding on housing options, all information and personal values should become part of the decision-making process.
  • We trained 200 home-care workers to help older adults make housing decisions. The training program showed the home-care workers that the best decisions about housing are made together with the older adult with frailty, their family/friend caregiver, and the home-care worker.
  • Housing decisions made together with the family/friend caregiver are more likely to result in the mutually preferred choice of the older adult and their caregiver.

Why was this study needed?

Older adults and their family members often face a tough decision about housing. Should the older adult remain living at home or should they move to a nursing home? Ideally, this decision is made together with the help of a home-care worker. However, decisions about staying at home or moving to a nursing home rarely involve all parties.

Suggestions on how these findings could impact frail older adults and/or their family caregivers and how this might be measured:

  • We made an aid to help older adults make the decision about staying home or moving. It helps home-care workers, older adults and their family member talk together. It shows the key things to discuss before making the decision. And it tells you what you should know to make the decision.
  • Our program helps home-care workers. They learn to talk more easily with older adults and their family members. They learn to listen to what they would prefer. And they learn to look for solutions.

Brief comment on type of study:

  • We asked two main questions: If you help people to make the decision together, is it a better decision? If the choice is made without involving the person who is moving or not, is it a worse decision?
  • First, we asked 16 home care teams in the province of Quebec to join our study. We interviewed 5 elderly people or a family member caring for them. Then we randomly chose 8 care teams to come to our training.
  • The training was about helping older adults and their family members make decisions about moving to a nursing home.
  • For all 16 teams, we asked the home-care workers to use what they learned in their work. When a decision was made, we asked the elderly person about it. The responses were compared to find out how training influenced decision making.
  • We did this study in 16 towns in eastern Quebec. Eleven of the towns were in rural areas and five were bigger cities.
  • The most important question we wanted to answer was: What role did the elderly person take, or their family member, in making the decision? For example, I made the decision on my own. Or we made the decision with the team. Or the team made the decision without me.
  • Other questions we asked were: Did the elderly person disagree with care workers? Did they regret the decision made? What role would they have preferred in the discussion, or in making the decision?
Communication to Policy

Title: Discussions about housing options should involve older adults living with frailty and their family/friend caregivers

Key Findings:

  • We found that older adults losing their autonomy and their family/friend caregivers have unmet decisional needs when they must decide whether to stay at home or move to a nursing home.
  • Seniors choosing between living in a nursing facility and staying at home should know about all available options and be assured that their values and preferences will be considered in the decision.
  • Based on interviews with 376 participants (mostly caregivers of cognitively impaired seniors) we found that this approach helped the care team to better engage caregivers in being actively involved in the conversations about housing options and that the final decision better matched seniors’ and caregivers’ preferences.

Why was this study needed?

Seniors and family caregivers have very little support in deciding whether to stay at home or move to another place, such as a nursing home. Often the decision is made without their involvement, resulting in unwanted choices and regret. Care teams must involve and engage those directly affected by this decision to decide together what is best for them.

Suggestions on how administrators or policy maker could use the findings:

Policy makers and administrators can:

  • Learn about the needs and perspectives of this growing sector of our society regarding their housing options. This knowledge will enable them to offer services aligned with seniors’ real needs.
  • Be aware that seniors and family caregivers are often subjected to housing decisions they were not involved in, and review how the health and social system is currently organized to deal with these unmet decisional needs.
  • Review how the health and social system is currently providing support for family caregivers, the primary carers of cognitively impaired seniors in our society, and how it can attend to their real needs.

Brief comment on type of study:

  • We aimed to evaluate if an interprofessional approach to shared decision making is more efficient than usual care for optimal decisions about seniors’ housing.
  • We invited home-care teams in 16 towns (11 rural, 5 urban) in eastern Quebec to participate in the study.
  • We interviewed 5 seniors or caregivers per team. Eight out of the 16 care teams received the training about our interprofessional approach to shared decision making and we invited them to apply it with older adults living with frailty and caregivers who were facing a decision about housing options.
  • Study participants were: a) seniors 65 years or older and caregivers of cognitively impaired seniors who understood French or English and could provide written consent; b) home-care workers; and c) organizations providing home-care.
  • Our main outcome was the role taken in the decision making as perceived by the senior or caregiver. For instance, was it active (I made the decision myself, with or without the care team’s input), collaborative (I made the decision with the care team), or passive (the care team decided alone, with or without my input)

Figure. Effect of the intervention on caregivers’ assumed role in decision making

Communication to Researchers

Title: Discussions about housing options should involve older adults living with frailty and their family/friend caregivers

Key Findings:

  • We found that older adults losing their autonomy and their family/friend caregivers have unmet decisional needs when they must decide whether to stay at home or move to a nursing home.
  • Seniors choosing between living in a nursing facility and staying at home should know about all available options and be assured that their values and preferences will be considered in the decision.
  • Based on interviews with 376 participants (mostly caregivers of cognitively impaired seniors) we found that this approach helped the care team to better engage caregivers in being actively involved in the conversations about housing options and that the final decision better matched seniors’ and caregivers’ preferences.

Why was this study needed?

Seniors and family caregivers sooner or later face a tough decision about whether to stay at home or move to another place such as a nursing home. Those directly affected by this decision must be involved, together with care teams, in deciding what is best for them. However, this rarely happens.

Brief overview of the methodology:

  • Our objective was to determine the best approach to supporting caregivers in housing decisions for seniors facing autonomy loss.
  • We performed a cluster-randomized pragmatic trial with health centres (HSSC) in eastern Quebec to evaluate the impact of training interprofessional home care teams in shared decision making combined with a decision guide on the proportion of caregivers reporting being active in decision-making about housing choices of seniors with loss of autonomy.
  • Participants included: HSSCs, their home care teams, seniors (>65 years; receiving home care services) and caregivers of cognitively impaired seniors.
  • All participating sites (11 rural, 5 urban) were in eastern Quebec.
  • The intervention was an online tutorial (1.5 hours), interactive workshop (3.5 hours), and decision support guide.
  • Our main outcome was the role taken in the decision making as perceived by the senior or caregiver. For instance, was it active (I made the decision myself, with or without the care team’s input), collaborative (I made the decision with the care team), or passive (the care team decided alone, with or without my input)

Potential impact of findings on clinical practice/patient care and how this impact might be measured:

  • Seniors benefited from the decision guide. It improved communication among care workers, seniors and caregivers by presenting the important aspects of the decision that should be discussed and understood before making a final decision.
  • Care workers were more prepared to engage frail older adults and caregivers in the conversation, to listen to their preferences and values and to find solutions that better matched their preferred options.

Remaining knowledge/research gaps:

  • More research is needed on the economic, political and logistical barriers to implementation of the interprofessional approach to shared decision making. This will help us to identify settings where barriers to the implementation are critical and where this approach is feasible.
  • We addressed the decision-making needs of caregivers alone by considering them our target population, whereas these decisions are “family decisions” that involve seniors and other family members as interdependent dyads.