APPENDIX E
Sample Family Information Brochure

WHAT YOU SHOULD KNOW ABOUT DONATING ORGANS AND TISSUES: AN OPTION FR FAMILY MEMBERS

How This Brochure Can Help

The death of a loved one is a deeply sad and painful time for you and your family. During this time, you face many difficult decisions. One is whether to donate the organs and tissues of your loved one, in keeping with your understanding of his or her wishes.

There are many options for providing care and comfort at the end of life. This brochure is written for families who are considering donating their loved one’s organs and tissues after life-sustaining treatments are stopped. The information is intended to help you decide whether this is the right option for you and your loved one. The brochure can be used as a reminder of discussions about donation, which may have taken place at a time when it is difficult for you to remember the information.

Please know that:

  • The decision to stop life-sustaining treatment should be made before organ and tissue donation is discussed.

  • You will not be pressured to have this discussion.

  • Whether or not you donate your loved one’s organs and tissues, your family member will continue to receive the best care that the hospital staff can provide.

Becoming an Organ Donor

Organ donation takes place only after life-sustaining treatment has been stopped, when the heartbeat and breathing have ceased, and death has been declared. Death is declared:



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Non-Heart-Beating Organ Transplantation: Practice and Protocols APPENDIX E Sample Family Information Brochure WHAT YOU SHOULD KNOW ABOUT DONATING ORGANS AND TISSUES: AN OPTION FR FAMILY MEMBERS How This Brochure Can Help The death of a loved one is a deeply sad and painful time for you and your family. During this time, you face many difficult decisions. One is whether to donate the organs and tissues of your loved one, in keeping with your understanding of his or her wishes. There are many options for providing care and comfort at the end of life. This brochure is written for families who are considering donating their loved one’s organs and tissues after life-sustaining treatments are stopped. The information is intended to help you decide whether this is the right option for you and your loved one. The brochure can be used as a reminder of discussions about donation, which may have taken place at a time when it is difficult for you to remember the information. Please know that: The decision to stop life-sustaining treatment should be made before organ and tissue donation is discussed. You will not be pressured to have this discussion. Whether or not you donate your loved one’s organs and tissues, your family member will continue to receive the best care that the hospital staff can provide. Becoming an Organ Donor Organ donation takes place only after life-sustaining treatment has been stopped, when the heartbeat and breathing have ceased, and death has been declared. Death is declared:

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Non-Heart-Beating Organ Transplantation: Practice and Protocols when brain function is lost; or when the heart and breathing have irreversibly stopped. Because of the emotional stress involved, making a decision about donating organs and tissues can be very hard. Your loss may be made easier by knowing that you are following the wishes of your loved one. He or she may have talked with you about organ and tissue donation, or may have signed a donor card. If you do not know your loved one’s wishes exactly, you will need to make the best decision that you can from what you know about your loved one’s values and your own. Families who donate organs and tissues gain comfort from knowing that the death of someone dear to them will help others, and that their loved one will leave a legacy by saving the life of someone who needs and organ or tissue transplant. What Will Happen Discussing Organ and Tissue Donation A physician or donation coordinator may discuss the option to donate your loved one’s organs and tissues after he or she dies. Your approval and written consent are required for organ and tissue donation. You will be asked questions about your family member’s medical and social history. These questions must be asked in case there are medical reasons why your loved one’s organs and tissues cannot be used for transplantation. Each hospital follows set rules (called protocols) for organ and tissue donation. While the rules may differ slightly from hospital to hospital, they are written to guide the care given to your loved one. You should be able to see a copy of the protocol that your hospital follows. The protocol describes the process of preparing your loved one for organ and tissue donation. Keeping the Organs and Tissues Healthy for Transplantation The success of a transplant depends on many factors. A very important one is how well organs and tissues are maintained until they are removed. To keep organs and tissues healthy, certain procedures may be done before life-sustaining support is withdrawn or after death has been declared. These procedures are not part of the medical care of your loved one, and include: Blood and other lab tests done to make sure your loved one meets the medical criteria for donation. A tube called a catheter or cannula inserted into a large blood vessel. This tube carries fluids that help to preserve the organs after death has occurred. Medication. Certain drugs help increase the blood supply to organs. Heparin is a drug that stops the blood from clotting. Phentolamine is a drug that

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Non-Heart-Beating Organ Transplantation: Practice and Protocols helps the blood vessels to expand (dilate). Decisions to use these drugs are made on a case-by-case basis. Removing the Organs and Tissues You may want to be with your loved one when life-sustaining support is removed and he or she dies. You can arrange this with the medical team caring for your family member. Organs and tissues are removed quickly after death has occurred. The medical team focuses entirely on caring for your loved one. The doctor responsible for preserving and removing the organs will not be the same as the doctor who takes care of you loved one or the doctor who declares death. Death usually occurs soon after life-sustaining support is stopped, though sometimes it may take a few hours. If this happens, the organs and tissues may not remain healthy enough for transplantation. Questions Family Members Often Ask Who will discuss organ and tissue donation with our family? In some cases, your doctor will give you information about donation. If you are interested, the doctor will ask a donation coordinator to discuss the process with you. If you know that your family member wants to be an organ and tissue donor, you can bring up the issue yourself with the nurse or doctor caring for your loved one. At what point will treatment be stopped? The decision to stop treatment will be made only when you and the medical team agree that it can no longer help your loved one, in keeping with your loved one’s wishes. What organs will be removed? The “solid” organs—the kidneys and liver—are the most often removed from a patient whose heart has stopped. Bones, corneas, heart valves, skin, and tissues also may be removed. Will the drugs needed for donation make my family member die sooner than if he or she hadn’t agreed to be an organ donor? Drugs are given to maintain the flow of blood to organs and tissues, not to hasten death. These drugs preserve the organs and tissues and increase the chances that they can be successfully transplanted. The physician caring for your

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Non-Heart-Beating Organ Transplantation: Practice and Protocols family member will decide what medications will be used. These will be avoided if they could worsen your loved one’s condition. Will my loved one feel pain? No. Pain management medication is used for procedures that might hurt, such as inserting tubes. Organs and tissues are removed only after death occurs.We want to have an open-casket funeral. Will donation prevent this? No. The incisions made to remove the organs and tissues are closed, like any surgical incision, and can be covered by clothing. Will organ donation increase my family member’s medical costs? No. Costs associated with the donation process are paid by the organ procurement agency. If you should have questions about a bill, contact the organization that recovered your loved one’s organs and tissues. This is a very difficult decision for me to make now. Who can I speak to about this? The death of a loved on is a devastating loss. No one can lessen this loss or feel your grief in the same way as you do, but help is available. You can get support from the nurse or doctor caring for your loved one; from the hospital’s chaplain, grief counselor, or patient advocate; and from the donation coordinator. Your religious leader, family physician, relatives, and friends also can help you in this time of need. A Checklist for Family Members Do you feel you have enough information to make a decision to go ahead with having your loved one be an organ and tissue donor? Is the medical care of your family member being handled separately from organ and tissue donation arrangements? Do you know that drugs will be given and why? Have you discussed the hospital’s protocol that explains the steps in organ and tissue donation? Do you know what organs and tissues will be removed? Have you given your written permission for organ and tissue donation? Information about Organ Transplantation About 20,000 organ transplants are done each year in the United States. If your loved one’s organs are donated, this gift of life will help one of 60,000 people on a waiting list for an organ transplant.

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Non-Heart-Beating Organ Transplantation: Practice and Protocols For more information, visit the U.S. Department of Health and Human Services (DHHS) Web site at www.organdonor.gov, or write to the Division of Transplantation, Health Resources and Services Administration, DHHS, Parklawn Building, Room 4-81, 5600 Fishers Lane, Rockville, MD 20857. This brochure is based on information in Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement and Non-Heart-Beating Transplantation: Practice and Protocols, reports of the Institute of Medicine. The Institute of Medicine, a part of the National Academy of Sciences, serves as an advisor to the federal government on issues of medical care.