Loss, Gain And Organ Donation

By Felicia Wells-Williams
Interviewed by Rasa Fournier
Wednesday - October 06, 2010
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Felicia Wells-Williams, RN
Family Services director at Legacy of Life Hawaii

How did you come to work with organ donations?

I’ve worked at Legacy of Life Hawaii (formerly Organ Donor Center of Hawaii) since 1994, after working in pediatric critical care at Kapiolani. My experience with a family there who lost their child in a tragic accident strongly impacted my decision to become an integral part of the organ-donation process. Just watching what that meant for the family to choose to donate their child’s organs - and the idea that they could even make that decision in the midst of everything they were going through - was truly inspirational to me. I applied immediately when a position became available to be a donation coordinator.

What services does Legacy of Life Hawaii offer?

Our organization is responsible for organ and tissue donation and recovery for the entire state. We educate the community about donation. We also educate hospital staff on how to refer potential donors, and how to work in concert with Legacy of Life Hawaii to make donations happen for families. We provide grief counseling to the donor family, and we are responsible for the surgical recovery of the organs and tissues when families consent to donation. Our efforts also involve placement both locally and nationally of donated organs and tissue for transplant.

Can you tell me about your department, Family Services?

Our key responsibility is to provide interaction with the family in the hospital at the time of someone’s death. We provide resources, information, bereavement services and we help stabilize a family and get them to a place where they can consider the opportunity of leaving a legacy of life for someone urgently in need. When families choose donation, we offer ongoing services and updates about the recipients of the organ donation. Recipients and donor families are not identified specifically to one another, but if they wish to communicate, we assist in mutual sharing of information through written materials initially.

Family Services coordinator Mari Kanemura shares resources about grief and loss

We conduct grief workshops, particularly around the time of holidays - a time that can be very difficult for grieving families. We also provide a commemoration event called Donor Recognition Ceremony in April every year. Families have an opportunity to come together from all of the islands and spend an afternoon connecting, remembering their loved ones and sharing time with people who understand what they’ve been through.

When we talk to a family about donation, in many cases they have little idea about the lifesaving potential of their contribution. It is important at this crucial time for families to have relevant and understandable information about the life-saving opportunity they have at a time that they can receive it, in a way that they can receive it - whether it’s language or culture - so they can make the decision that is the right one for them.

Can you talk about supply and demand?

The need for organ donation - kidneys, liver, heart - that need is great. Kidneys are the most in demand both locally and nationally. More than

100,000 people are on the national transplant wait list, and locally we have almost 400 people on the Hawaii list.

How long is the waiting list for a kidney?

It depends on your blood type and how ill you are. In Hawaii, many patients wait sometimes three to five years before a kidney becomes available, and in some of the rare blood types maybe even longer. While dialysis is an option, and sustains life, it is not a pleasant experience for most people.

In patients who become too ill to be transplanted, early death is often the outcome. Nearly 16 people die every day waiting for organs that are not available.

How does organ and tissue storage work?

Once organs - a kidney, liver or heart - are recovered for transplants, they go immediately to the patients and are transplanted within a matter of hours. Eye donation is a little bit different in that eyes can be transplanted up to a week later - a cornea transplant. Heart valves, bones or ligaments - any muscle tissue that’s going to be transplanted would be stored at a tissue foundation. When we have a donor and we recover bone or skin or ligaments, they’re all sent to that organization and they are stored sterilely and prepared and distributed to hospitals. These tissues can be stored for up to 10 years.

How does organ donor registration work?

People can designate on their driver’s license or on a registry that they want to be a donor. When someone dies, we check with the police department or the online registry to determine if they’re a designated donor and we share that information with the family. If they’re not designated, we talk to families and offer them the opportunity to make the decision. It happens rapidly - we’re notified by hospitals every time there’s a death. Organ donation occurs primarily when someone’s had a serious head injury and they are declared brain dead. They still have a heartbeat and they’re receiving medication to maintain their blood pressure, but they’ve been declared legally dead. The circumstance in which someone is declared brain dead is usually after a massive stroke or brain hemorrhage - bleeding in the brain - or trauma from an accident or a fall, or after a drowning. Really tragic, unexpected circumstances are what lead to brain death, so we’re dealing with the unexpected nature of it, the complexity of it - because they may not look dead, but they’re legally dead. We are very sensitive, and we have to assess the family’s understanding of brain death because it can be very overwhelming

How do you know the donated parts are healthy?

When we have a referral from a hospital, there’s a lot of testing that’s done to see if organs and tissue are suitable for transplant. We do testing for communicable diseases and to determine the health of the organ and if it’s functioning. There’s a lot of testing that’s done with the intent of safety for the recipient.

What about age?

Donors can be a few days old to being 70 years old.

What is the most rewarding part of your difficult job?

The “heart” of the work that we do and how inspiring it is when we’re working with families who, in the midst of everything that is happening, can think with compassion of others who can be helped.

Helen Keller, who was blind and deaf, is quoted as having said, “The world is full of pain and suffering, but it’s also full of overcoming it.” Donation is just the beginning of the overcoming for some families, and I feel privileged to be a part of it.

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