Opening remarks of Dr. Stephen Beed, medical director of Nova Scotia Organ Donation Program for Nova Scotia Health
These remarks were given at the Health Committee on December 8, 2020
Good morning Mr. Chair and Committee members,
I am Steve Beed and I am an adult intensive care physician at the QEII. For 15 years I have been the medical director of the Nova Scotia Organ Donation Program with Nova Scotia Health. I am pleased to be here today.
The Human Organ and Tissue Donation Act, which comes into effect on January 18, 2021 will improve health care for Nova Scotians by making it possible for more Nova Scotians to donate their organs and tissues at the time of their death.
Organ and tissue donation is more important than many of us realize, for the people and families it directly affects, and for our society. In Nova Scotia, at any given time there are more than 100 people waiting for an organ transplant to live a healthier, more productive life. For some, receiving an organ is a matter of life and death. People with end stage organ failure suffer on a daily basis and are living difficult lives while awaiting a transplant. Some will become too sick to receive a transplant, others will die while waiting.
Almost all of these people have acquired disease rather than congenital disease. They saw themselves as healthy until they got sick. We cannot know our future so this could be the fate for any one of us, even as we sit here in good health. If this is our fate, wouldn’t we want to be supported by a system that increases the chance that an organ or tissue is available if needed? It is about 6 times more likely that you will NEED an organ than it is that you will be a donor.
Thousands of Nova Scotians will benefit from tissue transplantation.
A tissue donation from just one person--such as bone, skin, heart valves, tendons or corneas--can renew or save life for as many as 75 people; burn patients, children with heart problems, the visually impaired, and those with mobility problems are examples of patients who benefit from this gift. Tissue donation can be lifesaving and is always life changing.
When families make the decision to donate, their neighbours will directly benefit. Last year, 53 Nova Scotians received organ transplants and more than a thousand received tissue transplants. Donation obviously affects recipients but it also affects their families, friends, colleagues, and acquaintances who love and support those in need of transplantation, and who benefit from their renewed life and improved health after transplant. This seems like the obvious reason why I do what I do, but it is not what has motivated me to support the development of this program.
I help take care of critically ill patients in the ICU and care of these patients must include caring for their families. Patients who become donors almost always have a sudden catastrophic injury to their brain…from trauma, bleeding from a stroke or an aneurysm, or from a lack of oxygen to their brain like after a heart attack. Their families saw them “healthy” just hours before we meet them in the ICU to discuss a devastating illness. These families are scared, overwhelmed, exhausted as the trajectory of their loved ones illness is defined. Sometimes there is no medical therapy that can change the injury and patients unfortunately die.
Families who are dealing with the sudden loss of a loved one are devastated. Can anything positive come from their terrible situation? Organ and tissue donation can have a powerful positive effect on those families in the midst of dealing with their tragedy.
We shared a video of Kelly Patterson who lost her son Steven in a tragic car accident. The decision to donate Steven’s organs helped Kelly, during a dark period of her life. This gift of life, not only impacted the recipient, but the fathers, husbands, wives, mothers, daughters, and sons of countless others who were given second chances at life from this decision.
I see people of all ages and backgrounds become recipients—and donors—of organs, eyes, and tissues. Lives are transformed, and donor families turn loss into hope. The gift and the benefit their loved ones provide to other families can assist in their experience of grief knowing the lives they have saved. This may not lessen the pain of the grieving process, but it will give families some comfort knowing the last gift their love one made was saving and changing the life of another.
This is the reason I have tried to support donation. The anonymous recipient is not my patient but the patient in front of me, and their families, deserve optimal end of life care and offering them the gift of donation is part of that.
I have never had a family become upset when we discussed donation, even when they chose not to provide consent, but I have had families contact me weeks after a loved one dies, very upset, when they realize that no one asked them about donation and that their loved one would very much have wanted to do that.
“My dad was always the guy helping out our neighbours, shoveling their driveway or helping with chores when he was alive, I know he would want to help people if he could when he died but no one asked us”.
Until recently donation education was not provided to physicians during medical school or residency or to other members of our team like nurses or respiratory therapists so there is a generation of health care providers who do not know much about donation. We are changing that as a system.
It is important for Nova Scotians to understand that organ donation opportunities are rare and we cannot afford to miss them. In a given year, about 4000 deaths occur in hospitals in Nova Scotia, but less than 80 will meet screening medical criteria for organ donation and only around 20 will go on to donate.
The new law, based on the premise of deemed consent, means if you don’t register a decision or have not told your family you do NOT want to be a donor - and a donation opportunity occurs - you will be considered as if you consented to donation after death. There are exceptions to this for example, new residents of Nova Scotia, part-time residents such as students, or temporary workers, people who do not have capacity to make this decision, and those under age 19. Our health care team will always speak with the donor family to confirm the donors’ last known decision if an opportunity for donation occurs. You can register your decision to be an organ and tissue donor or your choice to not be a donor, opting out at any time.
One of the arguments made against deemed consent is that the organ is no longer a gift or donation in the true sense of the word. It may appear as something that has been ‘taken.’ This is not true. We continue to urge individuals to make a donation decision, register it and discuss their decision with their families. Someone who wants to give this gift can certainly make that clear as can individuals who do not want to donate after death.
The level of awareness and support for organ and tissue donation in Nova Scotia is very high. A research study conducted in 2020 with DHW found 95 percent of participants supported organ and tissue donation and knew they could register to be an organ and tissue donor.
Nonetheless we understand some individuals will not want to be a donor. We respect their right to make that decision and have developed a registry to record that. Currently, the number of Nova Scotians who have chosen to opt out is just over 1,300, a little over 1 per cent of the population. We expect that to increase a small amount as January approaches. It is worth noting that Nova Scotia has the highest registry per cent in the country, at 54 per cent.
We made a commitment to educate the health care communities as well as the public at large, with particular emphasis on connecting with historically marginalized communities.
We work closely with our partners at the Department of Health and Wellness regarding this legislation. They have been leading a public awareness campaign that has included television, digital and social media advertising. Our awareness work continues with engagement and meeting with stakeholder groups and government partners to aid us in communicating with hard to reach communities and those with specific needs and concerns. This work will continue as January 18th draws closer and will long afterwards as we strive to keep Nova Scotians informed of this change.
The positive impacts of this Act go well beyond legislative work, it will strengthen our work in the hospitals and communities across the province. Indeed, if the change was strictly legislative it is unlikely we could expect a positive outcome but this law has come with a commitment to support transformation of the donation and transplantation programs here in Nova Scotia.
Transformation includes investment in enhanced staff education, IT/data system updates, policy and procedure renewals, new hires within the organ, tissue, and transplant programs and communication/campaign planning. Although the COVID-19 pandemic has slowed the process in some cases, the support that accompanies this legislation allows for hiring people into dedicated clinical and support roles that will directly impact donation and transplantation in Nova Scotia. In the donation program, the role of our coordinator has changed and we have increased the number of coordinators in the province as we accept the Premiers challenge to provide donation opportunities anywhere in the province. We have engaged four new donation physicians who will be based in the Annapolis Valley, Cape Breton and Halifax. We plan in the coming years to engage several more donation physicians, all of whom will work part-time along with their regular critical care duties.
We were able to secure, in conjunction with colleagues from Nova Scotia Health, Department of Health and Wellness, and other groups nationally, a grant for over 1 million dollars from Health Canada for a 3 year research project to study the effectiveness of the implementation of the Act and our system changes. We know the rest of the country, indeed the world, is watching what happens here.
We continue to work with our partners to ensure Nova Scotians’ are provided with knowledge and information regarding this legislation so they can make informed choices.
We will ensure optimal end of life care is provided to families by optimizing donation, which will contribute to more Nova Scotians being able to live healthier and longer lives after successful organ or tissue transplantation.
Transformation of the health care system is a rare opportunity. There have been and will continue to be challenges over the next few years but I remain confident that we will be successful. We have an excellent team at Nova Scotia Health, the IWK Health Centre, and DHW supporting the organ donation program, the Regional Tissue Bank and the Multi Organ Transplant Program as we all work toward this common goal.
With that Mr. Chair, I thank you again for the opportunity to appear before you and we look forward to our discussions here today.