Paul Wilder, executive director of the Commonwell Health Alliance, shares on the Change Healthcare podcast why advocating for advance care plans and ensuring consumer education on the subject is crucial.
CommonWell Health Alliance is a not-for-profit trade association devoted to the simple vision that health data should be available to individuals and caregivers regardless of where care occurs.
OKLAHOMA CITY (KFOR) – Anyone, regardless of age or medical history, can sign up to be an organ, eye and tissue donor and potentially save lives after death.
In fact, there are many people well up into their 80s and 90s that donate. The decision to use your organs is based on health of the organ, not age. So, don’t disqualify yourself prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.
In the United States alone, more than 112,000 people are on the waiting list for organ transplants. But because the demand is so much greater than the supply, those on the list routinely wait three to seven years for an organ, and more than 7,000 of them die each year.
Organs that can be donated include the kidneys, liver, lungs, heart, pancreas and intestines. Tissue is also needed to replace bone, tendons and ligaments. Corneas are needed to restore sight. Skin grafts help burn patients heal and often mean the difference between life and death. And heart valves repair cardiac defects and damage.
By donating your organs after you die, you can save or improve as many as 50 lives. The United Network for Organ Sharing maintains the OPTN, a national computer registry that matches donors to waiting recipients.
Some other things you should know about being an organ donor are that it does not in any way compromise the medical care you would receive in a hospital if you are sick or injured, nor does it interfere with having an open-casket funeral if you want that option. And, most major religions in the United States support organ donation and consider it as the final act of love and generosity toward others.
How to Donate
If you would like to become a donor, there are several steps you should take to ensure your wishes are carried out, including:
Registering: Add your name to your state or regional organ and tissue donor registry. You can do this online at either OrganDonor.gov or DonateLife.net. If you don’t have Internet access, call Donate Life America at 804-377-3580 and they can sign you up over the phone.
Identify yourself: Designate your decision to become an organ donor on your driver’s license, which you can do when you go in to renew it. If, however, you don’t drive anymore or if your renewal isn’t due for a while, consider getting a state ID card – this also lets you indicate you want to be a donor. You can get an ID card for a few dollars at your nearby driver’s license office.
Tell your family: Even if you are a registered donor, in many states, family members have the ultimate say whether your organs may be donated after you die. So, clarify your wishes to family. Also tell your doctors and indicate your wishes in your advance directives. These are legal documents that spell out your wishes regarding your end-of-life medical treatment when you can no longer make decisions for yourself. If you don’t have an advance directive, go to MyDirectives.com where you can create one for free.
Despite universal recommendations from numerous healthcare groups, most people lack an advance care plan. One study found that only approximately 25% of adults in the HealthStyles Survey had completed one. Additionally, the lack of an advance care plan leads to unwanted care — for example, in another study, 25% of patients cited unwanted care as a fear. Many patients and providers simply don’t fully understand what is/isn’t an advance care plan. These are not simply DNR/DNI orders, a living will, or Physician Orders for Life-Sustaining Treatment (POLST) or similar medical orders. These advance care plans include statements of patients’ wishes at the end of life, CPR desires, care at home/hospice, organ donation, etc.
MyDirectives first launched their companion app for iOS in 2015. Both the website and app can be used separately, but ideally they should be together. The website is probably the best place to start, but I did my plan on the app first, and then went to the website to fill it out more completely.
The website discusses the goals of “create, update, and share.” This way a user can immediately complete and sign a valid advance care plan and share it with their family, friends, and healthcare providers. Any updates made in the app or on the website seamlessly sync with one another and with the Apple Health app. The app allows the user to digitally sign the plan, make a video of the person’s wishes; use photos and videos to confirm the person’s identity; share the plan with others via email, text, and QR reader; and show the plan on an iPhone lockscreen, etc.
The multimedia components of the website and app are outstanding. A truly polished product — and completely free!
Rita Manfredi, an emergency physician at George Washington University Hospital, worries that unless students have been personally affected by COVID-19, they won’t take safety precautions seriously. While messaging about measures to prevent the spread of the disease are important, getting students to understand the risks should start in their homes through discussion with their family, said Manfredi.
“Students think that they’re invincible,” said Manfredi. While young people are less likely to become seriously ill from COVID-19, they may experience unexplained chronic symptoms after getting sick, she said. There is also a serious risk they may spread the disease to their friends, their professors and, once they return home, to their family.
“We need students to understand that when they go back to college, it won’t be the same. But I don’t think they do understand that. I think they’re expecting to go back and live life as they did before,” said Manfredi. “Some students have been at home since March, and they are craving social interaction. How do you tell college kids, you know, you really shouldn’t be going to that bar or sports event because you won’t be able to drink without taking off your mask?”
Manfredi, who has a son who is preparing to go to college, recommends that families sit down for a “dinner table discussion” before students go back to campus. Parents should talk about safety measures, such as masks, social distancing, hand washing and regularly disinfecting surfaces. “Ventilation is also really important,” said Manfredi. She encourages students to open windows in their dorm rooms and instructors to hold classes outside, if possible. In addition to these measures, Manfredi wants families to discuss what should happen in the event that someone becomes seriously ill.
While uncomfortable, discussions about advance care planning are important and signify how seriously students should take COVID-19, said Manfredi. When young people end up intensive care, their parents often have no idea what their child’s wishes might be, which can cause a lot of stress and uncertainty about how to proceed, said Manfredi. It is a good idea for young people to know their parents’ wishes, too, she said.
“Students need to understand this is not just a flu.”
Dear Savvy Senior: All this horrible coronavirus carnage got me thinking about my own end-of-life decisions if I were to get sick. Can you recommend some good resources that can help me create a living will or advance directive, or other pertinent documents? I’ve put it off long enough. — Almost 70
Dear Almost: Creating a living will (also known as an advance directive) is one of those things most people plan to do but rarely get around to actually doing. Only about one-third of Americans currently have one. But the cold, hard reality of the novel coronavirus may be changing that. Here’s what you should know, along with some resources to help you create an advance directive.
To adequately spell out your wishes regarding your end-of-life medical treatment, you need two key documents: A “living will,” which tells your doctor what kind of care you want to receive if you become incapacitated, and a “health care power of attorney” (or health care proxy), which names a person you authorize to make medical decisions on your behalf if you become unable to.
These two documents are known as an “advance directive,” and will only be utilized if you are too ill to make medical decisions yourself. You can also change or update it whenever you please.
It isn’t necessary to hire a lawyer to prepare an advance directive. There are free or low-cost resources available today to help you create one, and it takes only a few minutes from start to finish.
One that I highly recommend that’s completely free to use is My Directives (mydirectives.com). This is an online tool and mobile app that will help you create, store and share a detailed, customized digital advance directive. The easy-to-use platform combines eight thoughtful questions to guide you through the process. If you’re not computer-savvy, ask a family member or trusted friend to help you.
The advantage of having a digital advance directive versus a paper document is being able to access it quickly and easily via smartphone, which is crucial in emergency situations, when they’re most often needed.
If, however, you’d rather have a paper document, one of the best do-it-yourself options is the Five Wishes advance directive (online forms are available, too). Created by Aging With Dignity, a nonprofit advocacy organization, Five Wishes costs $5 and is available in many languages. To learn more or to receive a copy, visit fivewishes.org or call 850-681-2010.
Another tool you should know about that will compliment your advance directive is the Physician Orders for Life-Sustaining Treatment, or POLST (sometimes called Medical Orders for Life- Sustaining Treatment, or MOLST). A POLST form translates your end-of-life wishes into medical orders to be honored by your doctors. To learn more about your state’s program or set one up, see POLST.org.
Readers should also know that if you’ve already prepared an advance directive paper document, a POLST form or the VA advance directive form 10-0137, you can upload, store and share these documents at mydirectives.com.
And finally, to ensure your final wishes are followed, make sure to tell your family members, health care proxy and doctors. If you make a digital advance directive or have uploaded your existing forms, you can easily share them electronically to everyone involved. Or, if you make a paper advance directive that isn’t uploaded, you should provide everyone copies to help prevent stress and arguments later.