The Urban Futures Institute, a Vancouver based organization that researches population, community change and land use, recently released a report on the state of organ donation in Canada. These findings were presented in Toronto at the National Conference on Organ and Tissue Donation on June 21, 2000.

The report presents a demographically based projection of the change of magnitude of the shortfall between the demand for, and supply of, solid organs for transplant (transplant gap) in Canada over the next four decades. Data on organ transplantation rates in both an international and national context were analyzed.

Age specific patterns of donation, receipt and need for transplantation, as well as a summary of the population projection (used in the estimation of changes in organ need and supply) were discussed resulting in the forecasting of the transplant gap.

Findings revealed that Canada’s potential cadaveric organ donor pool is diminishing while the demand for organs will increase dramatically over the next several decades. With a reduction in the type of accidents that historically have led to potential solid organ donors and improved medical procedures and safety features, Canadians are living longer and healthier lives. Good news for the general population, but not so for the thousands of Canadians awaiting an organ transplant.

Upon reviewing this report we have been able to draw several important, though not entirely surprising, conclusions:

We must maximize our efforts to increase the Canadian cadaveric organ donor rate to equal those of countries with relatively large potential donor pools. This will require a significantly higher level of resources and efficiency of organ donor registration, hospital notification, transplant system infrastructure and government legislation (Universal/Required Referral). This means that continued pursuit of programs such as required referral of all mortalities, dedicated in hospital specialists, increased public education and registration of consent for donation is mandatory if the transplant chasm is to be prevented.

Continued emphasis on live donation in the context of kidney, liver and lung transplants. Due to broad population distribution across the country, we must consider the development of centres of excellence for certain procedures (live and living lung transplantation, pediatric liver, heart and lung programs) to ensure optimal patient care and cost-effective treatment.

The causes that have traditionally been the course of cadaveric organ donation are declining faster than those that create the need for transplant.

The age specific dialysis rates in all but the youngest age group have grown exponentially over the last two decades. An aging population and an exponentially growing need rate in the older age group portends increases in the future needs for dialysis and for transplants that will be much greater than the rate of increase in the population as a whole.

If today’s age specific donation and receipt rates prevail and the mortality rates continue to decline, the aging of the baby boom generation out of the propensity to donate age groups into the propensity to receive age groups will significantly increase the relative and absolute size of the gap between the number of organs available and the required number of transplants.

Any improvements in Canada’s transplant system must acknowledge the reality of both mortality rates and live donation in Canada. Similarly, there is a need to standardize the definition of cadaveric solid organ donor in all countries to ensure fair and equitable comparisons.

by Brian Sommerfeldt

The annual budgeting process starts with the Annual Operating Plan (AOP) sessions that are held each Fall. The AOP sessions determine the priorities and new initiatives for the coming year. These priorities combined with the requirements of ongoing operations and input from staff members are considered by the managers in preparing the first draft of the budget. The Operations & Quality Group meet to refine the budget. The budget is then presented to the Board of Trustees in March for provisional approval. Final Board approval is given when the Ministry of Health confirms the funding allocation.

The BCTS’ annual budget is approximately $25 million. The largest component of this is the Community Drug Program, representing 44 percent of the total budget. Perioperative fees paid to the transplant centre hospitals constitutes 24 percent of the budget and Retrieval and Ambulatory Services represent 15 percent of the total. In total, the BCTS spends 83 percent of its global budget on direct patient care, with 9 percent of the budget being allocated to clinical support services and 8 percent to administration. Within the global budget, priorities will change during the year as new issues arise that must be addressed. As a result, funds may be reallocated between programs and departments during the year to meet the changing priorities.

It is inevitable that you will experience a range of emotional reactions during the transplant process. These feelings are normal to this extraordinary situation . Powerful feelings are to be expected; trusting with time that this intensity wanes. If you recognize this you will feel less bewildered, more in control, and be better prepared to successfully meet the challenges and joys of transplantation.

By now, you have been through an intensive medical and psychological evaluation by the transplant team. You clearly have a failing organ, but the rest of you, both physically and psychologically, is in fine shape.

For many, the waiting period is beginning to be recognized as perhaps the most stressful time for patients and family alike. The chief worry is whether or not one will survive before a suitable organ is found. This anxiety is compounded by the inevitable recognition that your failing physical condition does not allow you to wait forever. The psychological challenge at this time is being able to maintain hope while at the same time come to terms with one’s own mortality. The most adaptive attitude appears to be one that simultaneously embraces this contradiction: hope for the best, while at the same time plan for the worst.

Interpersonal disruptions are common during the waiting period. Close friends may gradually drift out of your life. This is often the result of simply not knowing how to interact during this difficult time. Thus, the very time you need friends for social support, they may find that they themselves are unable to cope with the stresses and decide to lessen their contact with you. The ensuing loneliness may indeed be quite troublesome.

As your illness progresses, it may gradually drain your energy and force you into a temporary state of dependency. You may feel frustrated and angry. This may lead to increased unhappiness and marital discord. As one patient said, "you get sick and tired of being sick."

In spite of such challenges, we have faith that you can successfully cope with such difficulties. Individual and group counseling are available if you require additional assistance during any phase of the transplant process. We anticipate psychological hurdles, and thus do not view a request for support as being a sign of personal inadequacy. Quite the contrary, it is taken as an indicator of healthy self-awareness and is considered an appropriate use of the Transplant Team’s resources.

In addition to understanding the psychological aspects of transplant, there are also certain coping strategies that one can use to better manage inevitable feelings of anxiety, or depression. Stress amidst the various phases of transplantation is to be expected. Daily practice of a simple relaxation strategy can be very helpful.

It is interesting to note that one can influence the course of the transplant surgery by practicing these relaxation strategies. Emotional stress interferes with the body’s natural capacity to heal itself. Psychological techniques that can help you attain feelings of calm, self control, and optimism have a marked beneficial impact on postsurgical healing. Clinical research has demonstrated that patients who practice coping strategies can favourably impact the course of their transplant surgery and long-term outcome.

After the surgery, you can anticipate a newer set of psychological issues to appear. Prior to being discharged, you may experience some of the mood altering side effects of the immunosuppressive medications. Steroids can leave you feeling depressed, irritable, or even euphoric. Cyclosporin and Tacrolimus can cause confusion, anxiety, and depression. Many patients complain of mood swings. These states of mind are temporary and most often subside, as doses are gradually decreased. Under no circumstances, however, should you attempt to adjust your medication. Perhaps the single most important factor contributing to a successful long-term outcome is your willingness and capacity to adhere to your medication schedule. Prevent yourself from lapsing into complacency, and look forward to enjoying the gift of life.

By Yvonne Attwood

For the second year in a row, the British Columbia Transplant Society received a site visit from the National Quality Institute. The staff of the Society had to evaluate themselves and the quality of its programs. Once that was completed, a submission was made to the National Quality Institute who evaluated it, looking for improvement since last year’s submission and review.

Once again, the Society scored well, and demonstrated significant improvement, which earned another site visit and review. The three-man team arrived on May 30th, and spent the day with management and employees, investigating and asking questions about the quality initiatives that had been implemented since their last visit.

During the past year, the BEST (Business Excellence System for Transplantation) Program was started, encompassing patients, their families, staff and suppliers. The BEST Program looks at all the systems in place at the B.C. Transplant Society, develops measures to show trends in those systems, and works to improve the underlying processes and outcomes on a consistent basis.

A report on the findings of the National Quality Institute Team is expected in July and will be used as a springboard in our continuing pursuit of excellence in patient care and research.

After much work, a few pulled gigabytes, and a frazzled server, the BCTS implemented its long-awaited electronic registration via the web. Accessed through the Transplant Society’s web site, British Columbians now have an easy and efficient way to register on the Organ Donor Registry. On the first day of full operations, 10 people registered through this new means. And so far, 125 people have used the system.

To register, individuals complete an on-line registration form and once it has been completed correctly it can then be printed, and faxed to a dedicated number, where the system automatically accepts and processes the registration. The BCTS doesn’t receive any paper faxes, everything is done automatically. It would have been ideal for the entire process to be on-line, but for the registration form to be a legal document we need the registrant’s signature, and current home technology doesn’t allow for this.

Electronic registration won’t replace the traditional method of registering but it does provide people with an additional way to record their wishes. In the long run the BCTS will save money, by cutting down on postage costs and the need to print more brochures. It took some time to develop the system and work out the bugs that typically come with a project of this magnitude. The BC Transplant Society’s Information Systems Department deserves much credit for ensuring the success of this project.

Visit the BC Transplant Society’s
web site at www.transplant.bc.ca

by Brian Benson

On February 9th, the BC Transplant Society formed the first ever "School Committee". Made up primarily of former and current school teachers, students, and other transplant recipients with ties to the education system, the committee’s goal was to determine and develop a program to educate high school students about organ and tissue donation and transplantation.

After developing a presentation outline, the committee approached the School District Superintendents, with an introductory letter about the BC Transplant Society and the newly formed committee, along with the presentation outline. Each committee member followed up with a personal phone call to the Superintendents.

The goal was to get permission from the Superintendent in each district to approach the Principals, Teachers, CUPE, Student Councils, and Parents Advisory Committees.

Once the committee approved the presentation outline, individual members began sending out the presentation to school districts where they had contacts. The districts initially targeted were Delta, Surrey, Richmond, North Vancouver, West Vancouver, Comox, Courtenay, North Okanagan/Shuswap, and Vernon.

The response so far has been excellent. Presentations have been made in most of the districts. Committee members felt the presentation material along with the video, a 10 minute re-edit of last year’s Donor Recognition video, have been well received. As the school year came to an end, it was difficult to set up as many presentations as we would have liked; however, the Committee is in a good position to continue its great work in September as most of the School Districts approached have given us their consent to work with the various groups within their Districts.

If anyone would like to become involved with the School Committee or has contacts in Districts other than those mentioned, please call Sally Greenwood, Manager of Communications with the BC Transplant Society at (604) 877-2100 or 1-800-663-6189.