Volume 5 : Issue 1 April 2013 In this Issue Supporting Living Organ Donors 1 Program News... 2 Getting to know you... 2 Innovative Ideas... 2 Professional Education... 3 Working Group Updates... 3 National Perspective... 4 Donor Family Recognition... 4 Kudos Corner... 5 Stats... 5 Did You Know?... 5 Partner Updates... 6 Contact us... 6 Kidney donor Christine Beck and her husband Mike, Torbrook, Annapolis County, Nova Scotia Supporting Living Organ Donors When Christine Beck s husband Mike started dialysis in 2011, she saw the toll it was taking and wanted to help by donating a kidney. For almost a year she travelled from Torbrook to Halifax. Since we live in rural Nova Scotia, almost every test, and the surgery itself, involved travelling into Halifax and taking time off work, said Ms. Beck. In November, Nova Scotia introduced the Living Organ Donor Reimbursement Policy. We all worry about our finances, but removing this worry from our minds can make the decision to be a donor easier, said Ms. Beck. Nova Scotians can now be reimbursed for out-of-pocket expenses. Reducing barriers to organ donation is a win for all, donors, recipients, and the health-care system, said David Wilson, Minister of Health and Wellness. The policy applies to living organ donors who donate to a Nova Scotia recipient or to a donor-recipient pair who are part of the Living Donor Paired Exchange Registry, operated by Canadian Blood Services. Under the policy, eligible donors can claim up to a maximum $5,500 with receipts for some of the costs associated with travel, accommodations, parking, loss of income, and meals. 1
PROGRAM NEWS GETTING TO KNOW YOU Implemented in 2006, the Legacy of Life Program recently undertook its third strategic planning process. Following consultations with the advisory council, working group members, and strategic partners, the program has set priorities for the next three years. The new strategic plan aims to create a sustainable future with a focus on leadership; to help implement the new Human Organ and Tissue Donation Act (once it is proclaimed by government); to ensure end of life care includes the option of organ and tissue donation; and to support the implementation of national priorities led by Canadian Blood Services (once these are agreed upon by all jurisdictions). Professional education, policy guidelines and implementation, and public information also continue to be important components of the program. Progress continues toward the program s core goal of ensuring that Nova Scotians know about organ and tissue donation, choose to donate upon their death, and have the opportunity to do so. In 2012 there were 192 tissue donors and 18 organ donors in the province, making Nova Scotia one of the highest performing provinces in the country on a per capita basis. Peggy Abbott, District Resource Nurse, South Shore Health Peggy Abbott had been a Registered Nurse for more than 35 years when she saw a job posting for an organ and tissue donation district resource nurse. Through various jobs in her career, Peggy had always enjoyed teaching staff and the public. She thought the district resource position would be a good fit for her. Peggy became the South Shore Health District Organ and Tissue Donation Resource Nurse in April 2012, and she has been educating staff on donor referral INNOVATIVE IDEAS You can now let your friends know you are an organ donor on Facebook, by adding your organ and tissue donor status to your Timeline. At the top of the Status Update box, click Life Event, then Health and Wellness, then Organ Donor, and follow the prompts. This information will be added to your ever since. Public education is a passion for Peggy. She has recently presented at a local health fair, the South Shore Presbytery of the United Church of Canada, and at Nova Scotia Community College s Lunenburg campus. Outreach to the community is one of the most rewarding aspects of the job for her, and she looks forward to helping staff and the public to know about organ and tissue donation. newsfeed, where friends and family can like it, comment, and share their own status. This form of sharing has the potential to make organ and tissue donation a new social norm, and increase the number of organ and tissue donors in Canada. 2
Professional EDUCATION HIGHLIGHTS Cape Breton Clinical Day 2013 Having the conversation and offering donation at end of life is this year s focus during the fourth annual Organ and Tissue Donation Conference being held for more than 100 frontline healthcare professionals April 25 at the Quality Inn, Sydney. Topics will include personal stories from donor and recipient families, the donation conversation, donation and forensic examination, palliative care, and grief recovery. There will also be a Living Green Ribbon photo shoot where people become part of a living tableau a giant green ribbon. The families of Jillian Whelan and Hannah Carmichael will be on hand to honor their loved ones as we create this tribute. Hannah Carmichael was an organ donor in 2011. Her family will be speaking at this year s clinical day talking about her legacy. Link to CRNNS presentation In November 2012 Corinne Corning, Legacy of Life Program Manager, and Mark Bonin, Organ Donor Coordinator, presented at the College of Registered Nurses of NS through Telehealth. Cut/ copy and paste this web address into your web browser to access this session on how to identify, refer, and document the donation process in Nova Scotia. http://bit.ly/corningtalk Transplant Atlantic 2013 October 3, 2013 - Education sessions Bethune Ballroom, Bethune Room B44 Weather Watch - Dinner Thursday evening This event will welcome the conference participants as well as local community members. Jillian Whalen was an organ donor in 2012. Her family will be attending this year s clinical day. October 4, 2013 - Business meetings Room 5110 Dickson with Telehealth WORKING GROUP UPDATES As a result of the strategic planning process, there have been some changes to the Legacy of Life working groups. The Communications Working Group will continue to develop the Communications Plan for the program, which will be implemented by staff and monitored by the provincial advisory council. The Donor Family Working Group will continue to focus on the options for donation at end of life, including reviewing a patient satisfaction survey on the donation process and prioritizing issues raised by donor families. The Professional Education Working Group will be replaced by a team focused on the implementation of the new Human Organ and Tissue Donation Act once government proclaims it. An ad hoc group of stakeholders, under the leadership of the Canadian Blood Services Provincial Territorial liaison at the Department of Health and Wellness, will provide input on national planning. All working groups on the new strategic priorities are now in place. 3
NATIONAL PERSPECTIVE Registry for highly sensitized kidney patients to launch this Spring Kidney patients with multiple past exposures to foreign tissue through pregnancy, past transplants, and blood transfusions develop sensitivity to subsequent transplants. As a result, these patients are at much higher risk of rejecting a kidney from a large portion of the donor population. Women are disproportionately highly sensitized due to antibodies developed during pregnancy. Highly sensitized patients constitute about 20 percent of provincial waitlists, but historically receive less than one percent of available donor organs. To meet this challenge, Canadian Blood Services will establish Canada s first Highly Sensitized Patient (HSP) registry this spring. This is the third national patient registry established by Canadian Blood Services for the transplant community. It will serve patients needing very specific matches from deceased kidney donors. The HSP registry will provide tools to support kidney matching for highly sensitized patients, and to track interprovincial kidney sharing. The first step will be to allow transplant programs across the country to enter patient data for their highly sensitized patients. Inter-provincial sharing of kidneys through HSP will begin at a later date. Until now, there has been little interprovincial sharing of kidneys for highly sensitized patients, and there were no national waitlists for highly sensitized patients. DONOR FAMILY RECOGNITION Adam Kelly Donor Family Shirley Kelly Adam was a talented athlete and artist whose enthusiasm and love of life inspired me. He graduated from Cape Breton University with an automotive and collision repair certificate, and he loved to fix up old cars. He excelled as a hockey goaltender, and won the respect and admiration of his coaches and teammates. His passion for art shone through his many drawings. With a new job, a girlfriend, and plans for the future, he had much to look forward to. The HSP registry is the third such patient registry from Canadian Blood Services. In 2009, Canadian Blood Services piloted the Living Donor Paired Exchange program, which cross references incompatible donor/recipient kidney pairs with other incompatible pairs to create an opportunity for two recipients to receive kidneys from each other s living donor. In 2010, that program became national in scope. In June 2012, CBS launched That came to abrupt and tragic end when an automobile accident took his life on May 27th, 2007. He was 21. Two months before his death, Adam s health card came up for renewal. I reminded him it was his own choice whether to remain as an organ and tissue donor. What am I going to need them for when I m dead, Mom? he replied. Someone else may as well benefit from it. When the doctor came out of the trauma room, held my hand, and gently told me that Adam was gone despite their valiant efforts to save him, my thoughts turned to that conversation. As a family grieving the loss of our only son, we wanted to honor his wishes to be a donor. Through correspondence with the Tissue Bank, we learned that the life of a burn patient was saved, and more than 50 individuals received tissue from Adam s selfless donation. The pride we feel knowing that something good came from something so tragic gives us the strength to go on. Adam would be happy that others have benefited from his legacy. Because of the effect his decision had on our family, we encourage others to do the same. There are people in the world with a better quality of life because of our son s gift as a donor. Knowing this has helped lessen our grief. It gives us comfort to think that even when we die, a part of us can live on in others through organ and tissue donation the ultimate gift the gift of life. Shirley Kelly, Donor Mom the National Organ Waitlist (NOW) for all non-renal patients across Canada who have end-stage organ failure and are waiting for transplants. The NOW registry will be used for inter-provincial sharing of organs. Web: www.organsandtissues.ca Facebook: www.facebook.com/ CanadianBloodServices Twitter: @itsinyoutogive YouTube channel: 18882DONATE 4
KUDOS CORNER ICU Nurse Robin Stacey has taken on the duties of the District Resource Nurse position at Annapolis Valley District Health Authority. Says Robin, Ever since I had the experience to help care for a potential organ donor, I became very interested in organ and tissue donation. As the resource nurse, I am very excited STATS In Nova Scotia people register their consent to donate on the Nova Scotia Health card. Each year since 2003 has seen an increasing number of donors registering in the province. Registering the intention to donate organs and tissues, and talking with your family about your wishes, are an important part of the public education about organ and tissue donation. When registering with MSI for the first time, and every four years with their health card renewal, people receive a brochure with information and a website where they can learn about organ and tissue donation to help them make their decision. Public support for organ and tissue donation is high according to a 2010 awareness survey conducted by Canadian Blood Services, with 95% of Canadian either strongly supporting (69%) or somewhat supporting (26%) organ and tissue donation. MSI Donor Registry As of March 31 each year to spread my interest and experiences, and to help educate staff at Annapolis Valley Health and community organizations about the importance of donation, and what it can mean to the donor families and recipients. We all welcome Robin to the role! DID You Know? Organ and Tissue Donation and the Palliative Patient Leaving a Legacy One of the many myths surrounding organ and tissue donation is that the palliative patients are not eligible to donate organs and tissues for transplantation. This is not true. We encourage everyone to sign their donor card, and communicate their wishes to their family. Upon death, candidates for donation are thoroughly screened. Based on the results of that screening, many palliative patients may be eligible for donation. For example, many cancer patients are able to donate corneas since there are no blood vessels in the cornea that could transmit cancer cells. This could enable two people to regain their sight. Number of Health Cards Signed 465,000 460,000 455,000 450,000 445,000 440,000 435,000 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Many palliative patients take comfort in knowing they can leave a legacy, the gift of sight. Consent for the donation can take place before death, so patients have the opportunity to consent to the gift personally. Other palliative patients, such as those with Chronic Obstructive Lung Disease, or known neurological diseases may be able to donate organs and tissues as well. 5
PARTNER UPDATES Green technology and advanced forensic facilities are helping the Nova Scotia Medical Examiner Services (NSMES) to bring closure for families and find answers for police and other agencies. The Dr. William D. Finn Centre for Forensic Medicine consolidates all activities of the Nova Scotia Medical Examiner Service into one dedicated centre. The facility is named for Canada s first medical examiner, who is known for his expertise during the Halifax Explosion and Titanic disaster. Previously, Nova Scotia s medical examiner worked out of the QEII Health Sciences Centre, with administration offices elsewhere in Halifax. Key features of the new building include: enhanced security for information and evidence laboratory-grade air and water handling in the mortuary wing, to reduce the risk of microbial contamination capacity to expand, allowing the service to handle multiple deaths during an epidemic or after a significant accident such as a plane crash video-conferencing facilities which may allow pathologists to testify in court remotely a private briefing room for families information technology changes to archive autopsy images The building is pursuing gold certification under the Leadership in Energy and Environment Design (LEED) program. As a member of the Legacy of Life advisory council, the Medical Examiner Service supports the goals of improving organ and tissue donation process in Nova Scotia. The MES facilitates referrals for tissue donation, and works closely with the Regional Tissue Bank at Capital Health. The facility also hosts a tissue recovery suite, and is working with the Regional Tissue Bank to facilitate the use of this space. ORGAN AND TISSUE CONTACTS Peggy Abbott DHA1 South Shore Health Offi ce: 902.527.5802 Danielle Byrne DHA2 South West Health Offi ce: 902.742.3542, ext. 1759 Robin Stacey - DHA3 Annapolis Valley Health Cell: 902.698.6219 Jill Peterson DHA4 Colchester East Hants Health Authority Cell: 902.899.5683 Sue Boiduk DHA5 Cumberland Health Authority Offi ce: 902.667.5400, ext. 6377 Cathy Timmons DHA6 Pictou County Health Authority Voicemail: 902.752.7600, ext. 2895 Daily: 902.752.7600, ext. 2610 Nicole Wournell DHA7 Guysborough Antigonish-Strait Health Authority Cell: 902.870.5443 Offi ce: 902.867.4500, ext. 4258 Janet Evans DHA8 Cape Breton District Health Authority Cell : 902.574.2912 Offi ce : 902.567.7031 Corinne Corning Legacy of Life Program Manager Halifax: 902.424.7916 Capital Health Call and ask for the Organ Donor Coordinator or the Tissue Bank Specialist on call Halifax: 902.473.2220 6