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Saving Lives through Organ Donation Information and next steps for donor families


The Starfish Flinger As the old man walked along the beach at dawn, he noticed a young man ahead of him picking up starfish and flinging them into to the sea. Finally catching up with the youth, he asked why he was doing this. The answer was that the stranded starfish would die if left until the morning sun. “But the beach goes on for miles and there are millions of starfish,”countered the other. “How can your effort make any difference?” The young man looked at the starfish in his hand and then threw it to safety in the waves. “It makes a difference to this one,” he said.


Table of Contents About LifeCenter Northwest

Page 2

Non-profit organization designated by the federal government to facilitate organ donation in the northwest.

Information about Organ Donation

Pages 2-4

Understanding Brain Death

Pages 4-5

General information about organ donation, timing, cost, how transplant recipients are chosen and other important information.

Brain death is a difficult medical definition for many people to understand, so it is important to have all the facts.

Donation after Circulatory Death

Page 6

Donation after circulatory death can be considered when your loved one has suffered a severe, unsurvivable injury and you discuss turning off the ventilator with the doctors.

Tissue and Cornea Donation

Page 6-7

Helpful information about how many people may be helped through cornea and tissue donation.

When a Loved One Dies

Pages 7

Helpful information about how to handle the coming days, lists of things to keep track of and resources to ease the stress of this painful and confusing time.

What Do We Need During Grief?

Pages 8-11

General guidelines with tips on how to care for yourself as you grieve the loss of your loved one.


About LifeCenter Northwest LifeCenter Northwest is the federally designated organ procurement organization serving Washington, Alaska, Montana and Northern Idaho. LifeCenter Northwest is one of 58 non-profit organizations around the US designated to facilitate organ donation and help families facing end of life decisions. LifeCenter Northwest is here to support your family as you face many of the end-of-life decisions that come with the sudden and tragic loss of a loved one. The decision to donate comes during an extremely painful time, and we are here to support you as you think about and honor your loved ones’ wishes.

Information about Organ Donation • Less than 1% of people who die have the opportunity to become organ donors and save the lives of others. These gifts of donation are a miracle for recipients and their families. Recipients talk about their gratitude for being given a second chance, and their wish to dedicate their lives to honoring their donor and the gift. The kindness and compassion of you and your family member will long be remembered. • The donation process may take 24 to 48 hours or more. During this time, a LifeCenter Northwest Coordinator will be working to keep your loved ones organs viable and finding matching recipients in order to save more lives. • Although it is possible for a transplant candidate to match a donor from another ethnic group, transplant success rates increase when organs are matched between members of an similar background. • The surgical recovery of your loved one’s organs takes place in the hospital operating room. Your loved one will be treated with dignity and respect during the donation process. The donation of organs and tissues allows for the option of an open casket funeral.

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• Most major religions in the U.S. support organ and tissue donation as a humanitarian and selfless act of giving. To give one’s organs means to give expression to a true, deep act of love for one’s neighbor. Many faith leaders believe that donation is a matter of individual decision and respect an individual’s right to make decisions regarding his or her own body. • Please notify your LifeCenter Northwest Coordinator of any cultural considerations, end of life rituals or funeral arrangement considerations. The process may go a little slower sometimes due to a family’s wishes or the medical examiner request to conduct an autopsy. • The selection of recipients is based on many factors. Blood type and tissue matching are critical. Working with the strict national organ donation system, the United Network for Organ Sharing (UNOS), a LifeCenter Northwest representative will identify recipients who match the donated organs. There is no discrimination because of age, sex, ethnicity or financial status when determining who receives an organ. • After the recovery of organs and tissue, your loved one’s body is taken to the coroner or medical examiner if an autopsy is required or the funeral home of your choice. • Once recovered, organs must be transplanted within 4 to 48 hours, depending on the organ. Your loved one’s donation will immediately change the lives of each recipient and the friends and family who love them. Your decision to donate tissue can also result in a life-changing gift of health for those recipients. • All hospital costs prior to the determination of brain death will remain your responsibility, but LifeCenter Northwest will cover all donation-related expenses. If you receive a bill you do not understand, please contact LifeCenter Northwest at 1-877-275-5269 and ask for Family Services. We will work with the hospital to make sure that you are not billed for any donation expenses.

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• You will receive a letter from LifeCenter Northwest four weeks four weeks after donation, with general information about the recipients. If you would like to write to the recipients, please contact the Family Services staff at LifeCenter Northwest.

Please call LifeCenter Northwest if you have any questions regarding the donation process or your donation experience. We are here to help you through your grieving process so any feedback is very important to us. We can be reached toll-free at 1-877-275-5269.

Understanding Brain Death The Meaning of Brain Death

There are two ways that people die; cardiopulmonary death and brain death. Both brain death and cardiopulmonary death are formal, legal definitions of death. Cardiopulmonary death is the irreversible loss of function of the heart and lungs. Brain death occurs when brain function ceases because the flow of blood to the brain is stopped permanently due to a severe attack, injury or tumor. When this happens, all brain function stops, including the most primitive life-sustaining reflexes such as the ability to breathe, gag or respond to pain. Brain death is irreversible. The ventilator (a device for maintaining artificial breathing patterns) is all that keeps the heart beating and oxygen flowing.

Determination of Brain Death

A physician performs a series of tests to determine if brain death has occurred. The doctor also tests to rule out any other reason that could be causing the brain to not function, such as medical conditions, medications or extreme cold. Death must be pronounced by a doctor who is not a member of the organ recovery or transplant teams. Once your loved one has been declared brain dead, there is no chance for him or her to recover.

Upper Brain Brain Stem

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A person who has been declared brain dead no longer has any sensations and can feel no pain. They will have normal color and warm skin only because of the ventilator. The chest continues to move up and down with artificial breaths because of the ventilator. If your loved one is taken off the ventilator, breathing will stop, and soon after the heartbeat will stop. It is possible that there will be movement or jerking of the extremities, but these are not related to brain function. The ventilator can only support the heart and lungs artificially for a limited amount of time.

Time of Death

A physician performs a series of tests to determine if brain death has occurred. The doctor also tests to rule out any other reason that could be causing the brain to not function, such as medical conditions, medications or extreme cold. Death must be pronounced by a doctor who is not a member of the organ recovery or transplant teams.

Mario Araujo Mario was 11 months old when he received the gift of a lifesaving liver transplant. His donor was 3 year old Clinton Ford. Mario’s family met Clinton’s family after corresponding anonymously, and they have all found great comfort in knowing that although Clinton died tragically, he was able to save Mario’s life.

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Donation After Circulatory Death Donation after circulatory death is another donation possibility. Donation after circulatory death may be able to happen when a patient has a non-survivable, irreversible brain injury (but is NOT declared brain dead), and the family is given no choice other than to withdraw ventilator support. It may also be possible when a patient has a chronic, irreversible condition where death occurs shortly after discontinuing the ventilator. Withdrawal of ventilator support happens according to the hospital normal practice. If death occurs within a short time after disconnection from ventilator support, the individual can become an organ donor. Death must be pronounced by a doctor who is not a member of the organ recovery or transplant teams. If death does not occur rapidly, the ograns will have suffered anoxia (lack of blood flow & oxygen) making the organs unsuitable for transplant. The time factor varies for different organs, but it usually needs to be less than 1 hour, and less than 30 minutes for some organs. Only after the patient is declared dead can organ donation happen. After death is pronounced by the doctor, the patient is quickly moved in to the operating room where the sterile surgical procedure is performed to recover the transplantable organs. The surgery to recovery organs is, like any surgery, a very careful procedure.

Tissue and Cornea Donation Tissue donation is a gift of immeasurable value as there are many thousands of people waiting for a tissue transplant that will enable them to return to a normal life. Tissue transplantation is one of the great success stories of modern medicine. Although less widely publicized than organ transplantation, procedures using donated human tissue affect over a million people in the United States each year. While the average tissue donor may help more that 50 people, donors of even one gift of tissue make a very significant difference in recipient’s quality of life.

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Surgeons may use donated bone to repair injuries or correct birth defects in people of all ages, helping relieve chronic hip, back or knee pain. In some cases donated bone may be used to relieve pain and restore mobility to patients suffering from bone damage or loss due to cancer or trauma. Like bone transplants, tendon and ligament transplants allow


recipients to enjoy freedom from constant pain and help them regain their ability to engage in daily activities. Skin grafts may be used to aid burn victims and can be lifesaving, providing pain relief and a barrier to infection. Heart valves may be used to replace damaged valves in patients suffering from congenital heart defects. Cornea donation is facilitated through SightLife, and may give the gift of sight to two individuals.

When a Loved One Dies The time immediately following the death of a loved one is filled with a sense of numbness and anxiety. Still, many decisions must be made at this most stressful time. Others who have experienced the challenge of making crucial decisions during extreme grief have compiled this information as a guide. It is the hope of LifeCenter Northwest that this information will be helpful to you.

While you are at the hospital • Have someone call other family members to notify them of the death and let them know if you want them to come to the hospital. If you are a member of a church or synagogue, have someone notify your minister, priest or rabbi of the death and tell them whether or not you would like them to come to the hospital. • Decide which funeral home to use and let the hospital staff and LifeCenter staff know which one you’ve chosen. • If the death is under the Coroner/Medical Examiner’s jurisdiction, the Coroner/Medical Examiner will take the body and belongings, contact the family about all arrangements and decisions, and complete the death certificate. • Decide if you would like an autopsy to be performed. If so, sign the permission form. (Usually, this will not delay the funeral. The Coroner/Medical Examiner sometimes requires an autopsy.) • Gather your loved one’s personal belongings from the hospital.

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Marjorie Stiles Marjorie was an energetic and fun woman. She always said that there was no situation in life that you couldn’t sing or dance your way out of. When her family needed to make a decision about donation they said yes, because they wanted her spirit to dance on in the individuals she helped through cornea and tissue donation. “I miss my mother mother more than any word can say,” said her daughter Heather, “but it does bring me peace to know that there are people out there that she helped.”

What Do We Need During Grief? Time You need time alone and time with others whom you trust and who will listen when you need to talk. It takes months and sometimes years to feel and understand the emotions that accompany loss. If at all possible, take extra time off from work. It’s likely your employer will be supportive. Ask about leave benefits, specifically for bereavement. During this same conversation, ask your employer about an Employee Assistance Program (E.A.P.). An E.A.P. may be able to offer other benefits and support services, all of which are kept confidential.

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Exercise and Diversion Exercise is very important. Walk aerobically for 30 minutes each day with friends, if possible. It may help to have a “cause� to work for or to help others – this may give you a way to live this new life.

Reflection Take time for meditation, prayer, or reflection. Grief is an exhausting process emotionally and you will need to replenish yourself. Ask others what helped them in their time of grief. Do what feels healing to you and what connects you to the people and things you love.

Security Try to reduce or find help for financial or other stresses in your life. Allow yourself to be close to those you trust. Getting into routines helps. You may need to allow yourself to do things at your own pace. Make lists and set priorities. Many life insurance companies have a 90 day filing deadline, so you will want to start processes that are time sensitive.

Hope You may find hope and comfort from those who have experienced a similar loss. Knowing things that helped others and realizing that they have recovered with time will give you hope that sometime in the future your grief will be less raw and overwhelming

Caring Try to allow yourself to accept the expressions of caring from others even though they may be uneasy and awkward. Others are comforted when you allow them to help you. You may be surprised by the number of people who have experienced something similar. You are not as alone as you may think. Helping someone else who is also experiencing a loss may bring comfort to you both.

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Rest and Relaxation Get plenty of rest and relaxation. You may need more of some things, like hot baths, or afternoon naps.

Small Pleasures Do not underestimate the healing effect of small pleasures. Allow yourself to enjoy sunsets, a walk in the woods, a favorite food. All are small steps towards regaining your ability to take pleasure in life.

Permission to Backslide Sometimes, after a period of feeling good, we find ourselves immersed in the old feelings of extreme sadness, despair, or anger. This is the nature of grief. This may happen over and over, for an extended period of time. It happens because, as humans, we cannot take in the meaning of death, or the pain that accompanies it all at once. We let it in a little at a time, as we can handle it.

Family Grief While a family may suffer a common loss, grief is a solitary journey. Each person has their own way and own timetable for dealing with grief, and this is especially noticeable when multiple family members still live under the same roof. Although you have experienced a common loss, the grief path is still a solitary one due to your individual differences. By realizing this and making allowances for one another, it helps hold the feeling of “family” together.

Goals

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For a while, it may seem that much of life is without meaning. At times like these, small goals are helpful. Something to look forward to, like walking with a friend next week, a movie tomorrow night, or a trip next month, will help you get through the present. Living one day at a time is a rule of thumb. At first, don’t be surprised if your enjoyment of these things isn’t the same; this is normal. As time passes, it may be helpful to work on some long-range goals to give some structure and direction to your life.


Medications and Seeking Help Even medications to help people get through periods of shock, used under a physician’s guidance may prolong and delay the necessary process of grieving. We cannot prevent or cure grief. It has often been said about painful periods of our lives that the only way out is through. The emotional impact of your experience can come to life in any number of ways. If you suspect you need help in working through it, please consider contacting a professional counselor or therapist. Many of them specialize in areas which you may need help. This may include death loss, post traumatic stress, and depression. Help is available. If cost is a concern, ask about sliding-fee scales, or low or no-cost services. Again, ask your employer about what services may be available through an E.A.P. Short-term counseling is a common benefit.

Bryce Autry Bryce was only 6 years old when he died from a side effect of Chiari malformation, a rare disease which causes pressure on the brain stem. Bryce became and organ and cornea donor helping 6 people across the nation. “Our little superhero isn’t around, but there are people out there who could have had a very different outcome, and now they have a second chance.”-Ian, Bryce’s Father

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This is a lot of information to absorb in a short amount of time. Please, just remember that help is here for you and that organ donation is a meaningful way of honoring the life and memory of your loved one. Keep this booklet with you over the next weeks and months, and refer back to it from time to time. It may give you new ideas on how to take care of yourself, which resources to seek out, or just to validate how you are feeling. Thank you for taking the time to read this information and learn more about donation.

This photo shows the ripple effect of one organ donor. Alex Capperauld was 20 years old when he died, and he was able to save the lives of 5 people. His family wrrote letters to the recipients and heard back from them, and were eventually able to meet 4 of the 5 recipients. This photo is of Alex’s family meeting these 4 recipients and their families -38 people in all. Alex’s father Andy Capperauld says, “Meeting Alex’s recipients filled the hole in my heart that I’d had since Alex died. I went from missing him terribly to missing him wonderfully.”

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Notes:


Contact Information LifeCenter Northwest Family Services 11245 SE 6th St, Ste 100 Bellevue, WA 98004 Toll-free number: 1-877-275-5269 Local Phone: 425-201-6563 www.lcnw.org


Saving Lives through Organ Donation