Better support for families of organ donors – 20 suggestions for improvement

The experiences of family members of deceased organ donors and suggestions to improve the organ donation process: a qualitative study was published in the CMAJ on August 8, 2022. 

In Canada, little was previously known about why some families consent to donate their loved one’s organs and why others refuse. Providing support for the grieving family and loved ones is paramount for those about to be bereaved, regardless of whether organ donation occurs. The SHARE Study is a qualitative investigation of the experiences and perspectives of family surrogates of ICU patients who underwent organ donation decisions. 

In this study, 271 Canadian family members, who were substitute decision makers (SDMs), from across Canada (British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Quebec, Nova Scotia, New Brunswick and Newfoundland) were interviewed and have shared their experiences. This is the largest cohort of family members interviewed in Canada with representation from every province with an organ donation organization. 

Supporting families of organ donors should be the cornerstone of organ donation programs, yet there are gaps in Canada’s system. New research in CMAJ (Canadian Medical Association Journal) provides 20 suggestions from family members on how to improve support for grieving loved ones. 

Participants were recruited from organ donation programs across the country’s 10 provinces. Three themes with suggestions emerged from the family interviews: 

1. Comprehensive support around time of donation, such as: support from people with similar experience, more assistance from hospital staff, consideration of a designated support person, support when body of loved one was taken to the operating room. 
2. Connection to recipient(s):   Some families wanted to know if the donation helped the recipient; Others wanted to be connected with the organ recipient(s); Family members noted that the desire to know the recipient(s)’ health status would be entwined with their own grieving process. 
3. Improving support after donation:   More follow-up from the organ donor organization or hospital; Communication after leaving hospital about what organs were recovered; Respecting where the family is in its grieving process. 

The study team is grateful for the study participants who shared their experience and perspectives with our team. This insight is essential in understanding the required knowledge, skill and attitude that critical care physicians - and all involved in supporting the organ donation process - must have to best care for potential organ donors and their families - before, during and after donation may occur. 

Q&A with SHARE study research team members

How many organ donations take place in Canada each year? 

• In 2020, in Canada, there were 734 deceased organ donors  
• In 2020, 276 Canadians died while waiting for a transplant, up from 250 in 2019. 
• Canada still has a shortage of organs, with 4,129 patients waiting for transplants at year’s end 2020.  

Deceased donation is a rare occurrence. For someone to become a deceased organ donor, they have to die under very specific circumstances. The opportunities for deceased organ donation remain limited as only about 1–2% of deaths in hospitals occur in such a way that donation is possible.  

What is a substitute decision maker? What is the role of family members in the organ donation process? 

At end-of-life in an ICU, when donation may be possible, substitute decision-makers, usually family members,  are asked permission for organ donation, even when there is a registered donation consent from the potential donor.  

Decisions about organ donation are stressful for family members of potential organ donors. In this study, the research team sought to comprehensively explore the donation process from interviews conducted with family members of patients admitted to Canadian pediatric and adult intensive care units in Canada. 

We know families of deceased donors need solid support at key moments during the donation process, such as when their family member’s body is taken to the operating room, when organs cannot be used and when decision-makers are leaving the hospital after donation surgery. Better understanding of where there may be gaps or challenges will help us make system improvements to ensure solid supports are in place. 

How many families participated in this research? 

This is the largest Canadian qualitative study that has engaged with family members and asked them to give us recommendations on what we as a system and health care community can do better. 

In this study, 271 Canadian family members, who were substitute decision makers (SDMs), were interviewed and have shared their experiences. This is the largest cohort of family members interviewed in Canada with representation from every province with an organ donation organization. 

We're very thankful for the family members who participated in this…for taking the time to share their stories with us. Within our group and community we’ve got researchers from across Canada with many different expertise who have collaborated and continue to collaborate on this. And, we're thankful to also have the Canadian Critical Trials Group support. 

Why did you embark on this study? 

We know that there are significant burdens and impacts on family members of patients who are critically ill and who die in the Intensive Care Unit. 

There can be many moments of intense and difficult stresses and that can occur during end-of-life care, donation decision making, many moments while they're in hospital and after they’ve left the hospital. 

What we really wanted to do with this study was to speak to family members to better understand, what are we doing well, and what do we need to improve upon to provide the very best in patient and family-centered care. 

What is unique about this research? 

A unique aspect of this study is while other studies in organ donation research with family members have focused on the organ donation decision, we really wanted to have to look at the full experience and the perspectives around the time periods both in and out of hospital. So, we wanted to make sure that we had a space where family members could share what was most important to them along the full experience before, during and after the organ donation occurred. 

Learn more about the SHARE study and keep up with next steps at https://profedu.blood.ca/en/organs-and-tissues/SHARE  

Acknowledgements 

This study would not be possible without the participation of Organ Donation Organizations (ODOs). The SHARE study team is grateful for this incredible contribution in helping to organize this study, and most importantly for reaching out to family members inviting them to participate in an interview. Thanks to BC Transplant; Transplant Manitoba -, Gift of Life Program and Winnipeg Regional Health Authority (WRHA); New Brunswick Organ & Tissue Donation Program; Critical Care Organ Donation Program (Nova Scotia); The Organ Procurement Exchange of Newfoundland and Labrador (OPEN) and the Eastern Regional Health Authority (ERHA);  Ontario Health's Trillium Gift of Life Network (TGLN); Transplant Québec; Saskatchewan Transplant and Saskatchewan Health Authority (SHA); and the Southern Alberta Organ and Tissue Donation Program. 

This manuscript underwent an internal peer-review process with the Canadian Critical Care Trials Group. 

This work was financially supported by Canadian Blood Services. Canadian Blood Services receives funding from the provincial and territorial Ministries of Health and the federal government, through Health Canada. The views expressed herein do not necessarily represent the views of the federal, provincial or territorial governments or of WRHA.  Canadian Blood Services is not responsible for the management or funding of any Canadian organ donation organization or transplant program. 

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