Stephanie Evans
Hi, so my name is Stephanie. I’m a Program Educator here at MedCure, a whole body donation program in support of medical education and research. I’m here today to talk to you about how you can make a lasting impact on the world by donating your body to science. So please hold your questions until the end, if there will be a Q and A after the presentation, and let’s get started. First, let’s talk about the benefits of body donation. When a person chooses to donate to MedCure, they are making an invaluable contribution to advanced physician training disease study, the development of assistive medical devices and less invasive patient surgical treatments. You may be surprised to learn how significant whole body donations are to the advancement of medicine. There is no adequate substitute for the human body. When it comes to teaching and research. There are sophisticated virtual reality machines, plenty of textbooks and videos doctors can watch, but none of these compare to the human body. The pandemic caused a dire shortage of medical cadavers, but the need for body donors didn’t decrease. In fact, the need is even greater now and growing, and organizations like MedCure exist to ensure that that need is met. For example, if a clinical research group performs a study on osteoporosis that requires 10 female femurs, med cure will procure, test match and prepare the specimens for them. If that program were to try and obtain the 10 femurs on their own, it could take them decades to get potential donors registered to donate, and then to have those donors pass away. And since the research group doesn’t have the means to arrange long distance transportation for a donor at the time of passing they’d only have a narrow pool of local potential donors. So thanks to organizations like MedCure, who specialize in facilitating body donations from most states in the US, that clinical research group can get access to the donated tissues they need to perform their study within a few days. Many people share the desire to help others after they’re gone, just like those who sign up for organ donation on their driver’s licenses, while organ donation is seen as a selfless, altruistic gift of life, the public remains largely unaware that whole body donation is even an option for them. Most are also unaware that not everyone will meet the conditions necessary for organ donation when they pass, or that many people who aren’t eligible for organ donation might still be eligible for body donation. For example, unlike deceased organ donation, body donation does not require the patient to be pronounced brain dead for them to be eligible. So if you aren’t eligible for organ donation, except for cornea transplant, perhaps body donation offers another way to make a lasting contribution. However, it’s important to note that if someone is a candidate for transplant, donation, saving a life immediately takes precedence over research and education. Some people choose whole body donation because there are no costs associated upon acceptance. We cover all donation related expenses, including removal and transportation to the lab. Cremation, the option to have cremated remains returned to the family, or memorial scattering here in our ossuary in Oregon, and one certified copy of the death certificate. Since the average cost of funeral expenses is between four and $8,000 I’m sure you can see why some people might want to avoid it. Another thing that we offer to donor families if they request it, is what we refer to as the family letter. This letter will let them know how their loved one’s gift helped benefit medical science. We find that a lot of families do want this letter as it can help them find closure and reassure them that their loved one’s gift was worthwhile. MedCure is proud to be one of only seven organizations in the US to have achieved accreditation from the American Association of Tissue Banks for all four of its facilities. AATB associate accreditation is one of the highest available in the industry, and it is voluntary. The AATB set standard for quality, safety and availability of donated tissue medicure is committed to meeting these high standards, and we are proud to be recognized for our efforts. I want to take a minute to explain why that’s so important. The AATB ensures that any organization they accredit operates legally and ethically and that it will treat donors and their families with dignity and respect. The AATB sets standards for quality and safety to help protect researchers and educators from the risk of infectious diseases. They also ensure the traceability and transparency of donors to their families throughout the donation process. This means that, with an accredited organization, families can be secure knowing that their loved one’s gift truly is going to benefit a legitimate medical research or educational program. Accreditation for whole body donation programs through AATB was first offered in 2014 and is completely voluntary to ensure that we are adhering to the highest possible standards. MedCure chose to pursue accreditation as soon as it was offered. There are currently only seven whole body donation programs in the US that have achieved accreditation. No matter which program you choose to donate through, we always highly recommend that you choose an accredited one. For more information on accredited body donation programs, you can visit the AATB website at www.aatb.org One of the questions we get most frequently is who can be a whole body donor? The good news is that most people who wish to donate are eligible. MedCure has no upper age restrictions and can accept donations from individuals with a wide variety of medical conditions. The most common reasons for a donation to be declined are diagnosis of or exposure to certain contagious diseases such as HIV or AIDS, hepatitis B or C, active tuberculosis or Creutzfeld Jakob disease, aka Mad Cow, being extremely over underweight at the time of passing, any history of illegal IV drug use or other illegal drugs excluding marijuana, prolonged periods of homelessness, incarceration or institutionalization, lack of a social security number, other forms of government issued ID, or lack of someone capable of consenting to the donation. Next, I’m going to tell you how to register your intent to donate. There are two ways to go about it, and they’re both fairly simple. The first is by filling out the body donor registry form on our website. The second is by filling out consent forms and sending them in via mail or email. We’ll talk more about consent forms and how to fill them out in the next slide. Once a person has registered with us as a donor, we will send out a welcome kit that contains a welcome letter, an informational brochure, a Terms and Conditions Statement and two donor cards if you have registered on our website. It will also contain a consent form and vital statistics worksheet. We don’t purge our files, so there’s no need to call us unless it’s to update your information after a move, a name change or change a phone number. If at any time you misplace or damage your card, you can call us and we’ll send you more. We recommend signing it and keeping it in your wallet or on your refrigerator. You can also give one to your family or your doctor or the executor of your estate, whatever you want to do with them. We can also send you more if you need them. Consent forms are not legally binding and create no obligation on your part. However, you can rescind your registration at any point by calling or emailing. Now let’s talk about consent forms. Our consent forms are two pages, usually front and back, and is important that they are filled out properly. These are legal documents, and MedCure staff cannot correct or alter or enter any information on them, so if they’re not filled out properly, we will have to mark them as invalid and wait for new ones. This can stall the donation process, cause extra work, which no one wants. So to avoid this, before sending the forms, verify that the form is filled out in its entirety with no unknowns or blank fields, commonly missed fields are consent or witness signature fields, date signed, time, signed and check boxes. Consent forms do not need to be notarized, but it should be signed by two witnesses, one of whom must be a disinterested party. This can be anyone, a mailman, a friend, a neighbor, as long as they are not blood related or a spouse, the witnesses must both sign after the consent or the name must match on all forms and should be the legal name on file with the Social Security Administration, and should not be a nickname after it’s signed and filled out. You can submit the form to donate at MedCure.org, or fax them to 503-257-9101. If a donor is on hospice or has been given a life expectancy of six months or less, we would prefer that you call us before filling out the consent forms. When the donor or their family member calls us, we will need to conduct a screening to ensure they meet all the eligibility criteria. The screening takes about 45 minutes to complete, and it’s advised to have the best medical historian for your family to complete it. Although donation acceptance cannot be guaranteed prior to death, we can collect information in advance and communicate any anticipated problems, such as weight gain or weight loss after the screening has been completed, the donor donation coordinator will advise the donor or their family on how to obtain and complete our donation consent forms if they haven’t been completed. The only people who can legally complete the forms prior to the donors passing is either the donor themselves or someone who has a valid healthcare power of attorney. If someone is attempting to sign the consent forms as the healthcare power of attorney, we ask that they first submit the HPOA forms, the HPOA document, to our donation coordination team for review to determine if it’s valid for our purposes. Before the consent forms are signed, we will look for specific phrasing regarding anatomical donation. If the donor or valid HPOA isn’t available to sign the consent forms, the forms can be completed by the legal next of kin after death has occurred, then the donation coordinator will explain to the donor and their family what to do at the time of passing. Now I’ll go over what the process looks like when a registered donor passes away. Ideally, we will want to begin the registration process prior to a donor’s passing. However, this isn’t always possible. If the family is unable to begin the process prior to the donor passing, we will start a registry with the next of kin at the time of passing, the family or a member of the hospice staff should contact MedCure as soon as possible by calling our toll free number at the bottom of the screen. We will want to make sure that we are the first call made and not a funeral home, as doing so could result in the family being responsible for the expenses or even possibly a decline. So that’s really important. The donation coordinator will need to collect some information from the hospice nurse, hospital nurse or emergency responders. If the donor didn’t previously register with our program, then we will need to go through the eligibility screening. If the screening was already completed, they will simply verify that there hasn’t been any new diagnosis or major changes since then. Once all of this information has been gathered, we will confirm that the family has either submitted consent forms already or understands thatvthey need to submit them within the next 24 hours. Without these forms, we cannot move forward with the donation process. Next MedCure will contact the funeral home in the donor’s area to make transportation arrangements. We will provide the family or hospice staff with an estimated time of arrival so they know who to expect and when, after the time of passing. There are a few things that your family will want to keep in mind. First is that the one certified copy of the death certificate that MedCare provides will arrive eight to 12 weeks. If your family needs additional copies sooner, they can request them from the county vital records department approximately two weeks after the donor has passed away. If you designated someone to receive your ashes, they should arrive within four to six months of when you came into our care, and about one week before the ashes are sent, we’ll send a letter letting your loved one know to expect them. If your family chose to receive the optional family letter, they should get it approximately one year after you pass. If they didn’t request the letter when you registered, they can still contact us to ask for it at any given any given time, even years later. Another resource we offer to our donor families is a donor memorial page on our website where families are encouraged to share a picture and a story or anecdote. We really love reading these stories, so if you donate with MedCure please let your loved ones know that this option is available to them. we often get asked if you need to mention your intent to donate in your will. You can if you’d like to, but we do want you to sit down and have a conversation with your family so that they know what to expect. Here are some tips for broaching this difficult topic: Start gently. They may want to resist the subject. “I know this might be unexpected, but I want to be open and honest with you about my wishes” or something like, “I’ve been thinking a lot about my end of life plans, and I want to share something important with you”, explain your reasons for wanting to donate, whatever that may be, make sure they know that this is your wish.;Tell them what to expect. This is a great time to give them a brochure donor card, and the back of it has an at-a-glance, instructions for how to make that time a passing call, so they know exactly what to do when the time comes; Give them some time to process. This is heavy stuff, and it may be difficult for your family to think about what life will be like when you’re no longer around. So you can encourage them to call us if they have any questions or concerns, but let them know that we won’t be able to share any any of your info before, without your verbal or written consent; discuss the possibility of creating a legal document like an advanced directive that will ensure your family can make medical decisions for you if you can no longer make them for yourself. For more information on advanced directives, you can check out the resources page on our website, or contact a local aid office near you. You can also find a simple advanced directive at fivewishes.org which our coordinators frequently use, and they’re very familiar with it. Thank you so much for taking the time to learn about this option, and thank you so much for letting me present. Please know that we’re with you and your family each step of the way. This conclude, my part of the presentation. Now I’d like to open the floor to any questions you may have about MedCure or whole body donation in general.