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.
As an emergency physician during the COVID-19 crisis, I have seen the ways in which our ideals of safety and protection have completely changed. Providing care in the historically underserved area of Prince George’s County, Maryland, the coronavirus has become an all-consuming threat dominating my work, especially considering the resounding uncertainty around how the virus will change. The hectic emergency room that I am used to is nothing compared to the chaos that has erupted now.
With tensions high and the severity of the virus ongoing, we have all had to seriously reflect on our own well-being and how this virus may impact us and our families. And as a pregnant physician, these concerns have felt even more real. Not only do I have to consider ways in which the crisis could impact my health personally, but I have to think about how this could affect my daughter to be born in June.
The constant buzz of the emergency department is not exactly conducive to being pregnant under normal circumstances. Now add the intensity of COVID-19 and it requires an introspective look on ways to practice self-care in order to maintain personal health and wellness. I am careful to be conscious of my mood, fatigue and physical needs.
Simple things such as drinking enough water on a shift are more difficult since I’m constantly wearing a mask or a respirator. I have friends and family who want me to outright stop working. But with so much need during this time of crisis, I didn’t feel like I could just sit at home if I have the ability to help people, to make this chaos even a little more bearable. I needed to take myself into account more now than before and be even more vigilant about my physical and emotional needs. After all, I will not be helpful to anyone if I become sick.
I’ve seen firsthand the ways COVID-19 is devastating to so many. Many patients are being thrown into an emergency situation and don’t know how to respond. With such uncertainties, the importance of advance care plans is more essential than ever.
Every day, I make countless phone calls to frantic family members who are scared and shocked and too often cannot answer the question, “What would your loved one want done in this emergency?” This is not just something I tell my patients. It’s something I confront myself.
COVID-19 has made me reconsider my own health care wishes. Upon realizing the magnitude of this crisis, I sat down with my husband to have a difficult conversation about what I would want for myself should I become sick and ways to best protect our baby.
During the pandemic, it is difficult to think about ourselves and our loved ones being individually impacted. However, it is important to be prepared in these situations ahead of time rather than waiting for a crisis to strike. We, as physicians, must lead by example and do for ourselves what we are asking so many of our patients and family members to do in the era of COVID-19.
We have all witnessed how quickly patients can become sick and how this virus can strike people of all ages. You can — and should — make an advance care plan outlining your healthcare wishes. I recommend going to CDC.org for more information on state-specific advance directives or an online platform, like MyDirectives.com for a convenient and easy way to keep wishes up to date and accessible to your family and medical team.
The importance of advance care planning is immeasurable should a health crisis arise particularly for us who are high risk in the emergency department and especially when we must face formidable challenges when creating protocols for scarce resources.
As a mother of an 18-month old and soon to be a mother of a newborn, the pandemic has impacted me in a unique way. The global crisis provided me — and so many mothers-to-be out there — with challenges unthinkable when we first got pregnant. Many hospitals are now preventing visitors during checkups, ultrasounds and in delivery rooms. This sense of loneliness in what should be a time of joy during pregnancy also adds to the fears that come with pregnancy.
However, it is important to remember that even if without friends and family in the delivery room, we are not alone. The medical professionals providing care to pregnant women at this time are there for support, to help combat fear, anxiety and uncertainty. In this time of crisis, pregnant women are strong and are in this together and will get through this with grace.
I made the decision to work until the risk became too great, until I could no longer wear PPE for 12 hours a day and drink enough water, use the bathroom or eat like I should. I recently went on leave after speaking to my OB/GYN and considering my previous risk of preterm labor and the new ACOG guidelines to stop clinical work at 36 weeks. This was a difficult decision. Doctors are notoriously bad patients and I feel guilty for leaving my colleagues on the front lines.
Like most emergency physicians I feel a duty to work and often put others first. My background in bioethics and health policy has provided me with an ability to think of patients in a more comprehensive context. Being an emergency physician has given me the ability to see the human in people, to be present at their lowest and most vulnerable moments and to identify with the common human experience.
The ER is often filled with people who are scared, lonely or lost. But those same people can be hopeful, courageous and optimistic. They are petrified of what is to come, but hold onto the hope that the future will be better. These people I encounter daily are what drive me to move forward. They instill hope within me, especially now during a time of fear and confusion.
Working during this crisis has reconfirmed the sense of faith I have in those in my community. Those working long hours to fight the pandemic. Those following CDC guidelines in order to prevent the spread and flatten the curve. Those making sacrifices in order to protect the vulnerable.
They remind me why I do what I do — and why I love what I do.