“People always ask me as an ER doctor, ‘What can I do to help you?’ One of the most important things you can do is have an advance care plan,” Dr. Elizabeth Clayborne tells MSNBC’s Alex Witt, “Go to CDC.gov to look at state specific plans, or an online platform like MyDirectives, because thinking about that ahead of time instead of when it’s an emergency is one of the most useful things that you can do for me as an ER provider.”
Advance plans are especially vital now. To give just one example: A person who wants to die at home may free up an ICU bed for a coronavirus patient.
By Dr. Elizabeth P. Clayborne
As an emergency room physician, I’m used to working in a hectic environment. I have never experienced anything as heartbreaking and traumatic as the COVID-19 pandemic. It’s an intense and difficult time for everyone, especially patients and health care providers. Compounding that challenge is the increasingly common experience of doctors being forced to make impossible decisions for patients for whom we have no medical history and who did not plan their care in advance.
Physicians such as myself are becoming overwhelmed and the need to know patients’ advance care plans is more vital than ever. Scarce resources such as ventilators and ICU beds will become precious and it is essential that we reserve these treatments for patients who want them and can most benefit from their use.
Whether you are 18 or 80, advance care plans make it easier for doctors to provide care that honors the wishes of an individual if they are unable to speak for themselves. In the ER, we have minutes to make a decision that will dictate if a person might live on a machine or pass a natural death. I always make decisions based on what I think is best for the patient, but unless people have an advance care plan, that is exceedingly difficult. If I’m told about a patient’s wishes, not only does my work become more person-centered — it can also be quicker. As we handle massive influxes of patients amid dwindling yet crucial resources, time is everything.
‘Die Naturally and with Respect’
One of the most common dilemmas that families and medical professionals alike must navigate are DNR, or “Do Not Resuscitate” orders. Especially now, this ethical question is at the forefront of public discussion, as hospitals evaluate their DNR policies amid COVID-19.
I know patients and families are afraid to say that they don’t want to be put on life support, even if it means their quality of life may decrease, because they assume that they will receive no medical treatment. This falsehood is indicative of a troubling pattern. Too many people are not considering their health care decisions in advance, and as a result, are not being educated on what many of these terms and practices even mean.
I always tell people that “DNR” can mean to “Die Naturally and with Respect.” For some patients, they would rather have their pain and symptoms controlled and have a focus on the quality of their life rather than the quantity of days that they are alive. Others wish to be put on life support for a variety of reasons. It is simply essential that patients be given the space and resources to make an informed decision. If a person expresses in their advance care plan, for example, that they wish to be cared for at home, then that can help make an ICU bed available for a person who requires hospitalization.
For years, many physicians have asked our government, employers and health insurance providers to encourage everyone to create an advance care plan so we are able to understand patient’s wishes and can respect their decisions if they become critically ill. With or without a pandemic, having an advance care plan in place benefits both patients and providers. It allows patients to communicate their medical wishes to their families, doctors, nurses, and other caregivers and helps providers administer the desired care in a timely manner. As we’ve learned from global reporting on COVID-19, being able to treat patients efficiently is essential to reducing fatalities, maintaining lifesaving resources and preserving the effectiveness of our health care systems.Get the Opinion newsletter in your inbox.
Vital to have a plan amid global crisis
Everyone deserves the peace of mind of knowing their wishes will be respected, even and especially if they become incapacitated. In making an advance care plan, patients should consider some basic questions: (1) Who do you want to represent you if you can’t communicate during a health crisis? (2) What are your values and treatment goals? (3) What medical history and information do you want anyone who treats you to have?
My highest aim as a physician is to provide person-centered care. I can’t do that unless my patients clearly articulate and communicate their wishes while they are able to do so. CDC.gov has online resources for advance care planning that are state specific, but it is very helpful to have an electronic record that can be kept up to date. For example, I use a free online platform MyDirectives.com. Plans created online can be altered quickly and securely as needed and can be shared with family and medical providers, so everyone is on the same page.
It’s human nature to avoid subjects that remind us of our own mortality, especially in a time of heightened anxiety. But it shouldn’t take a global health crisis to illustrate the importance of discussing our goals of care and what our family should do if we become acutely ill. These conversations are difficult and raw, but pale in comparison to the grief that may come – and that I have seen materialize for too many families – when a loved one is in an emergency situation and they don’t know how to best advocate for them.
As in every area of life, I encourage people to hope for the best outcome in a medical crisis and prepare for the worst. It is always considerate and responsible to have an advance care plan in place. In an international crisis — for patients, families, and medical personnel on the frontlines of the COVID-19 pandemic — it is indispensable.
Dr. Elizabeth P. Clayborne is an emergency medicine physician based outside of Washington, D.C. She has a master’s degree in bioethics. Follow her on Twitter: @DrElizPC
Read the op-ed on USA Today online here: https://www.usatoday.com/story/opinion/2020/04/09/coronavirus-crisis-plan-end-life-care-help-yourself-others-column/2973529001/
Dr. Elizabeth Clayborne of the University of Maryland’s Prince George’s Hospital Center talks to Cheddar News about fighting on the front lines of the coronavirus pandemic while being pregnant herself.
“I’d really like to emphasize that in addition to putting ourselves on the line we’re also being prepared for the storm of people that could come and overwhelm our facilities and when that surge arrives we’re often going to have to make important decisions about who to care for what scarce resources like beds and ventilators to use. So, I always emphasize the importance of people having an advance care plan and talking to their loved ones while they’re home to ensure they have an understanding of what you would want done in case you do become acutely ill,” said Dr. Clayborne. “And that’s specifically important so that doctors like me don’t have to be overwhelmed with having to make these difficult decisions if we do indeed become overwhelmed by the number of people that come at one time. So you can go to CDC.gov to fill out advance care plans that are state specific or you can use something like MyDirectives.com, which is an online platform does the same thing.”
- Dr. Elizabeth Clayborne, an ER physician at the University of Maryland Prince George’s Hospital Center, says anyone, even young people, can make an advance care plan
Dr. Elizabeth Clayborne is an ER physician at the University of Maryland Prince George’s Hospital Center, and offered her first-hand account of treating coronavirus patients.
“We’re very busy. We definitely in the last week have seen an increased number of acutely ill patients, people coming in, respiratory distress,” Clayborne said.
“Right now, we’re really bracing ourselves for the storm that we think is coming upon us. We’re currently seeing an increased number of COVID positive patients,” she said.
Clayborne is treating coronavirus patients amid a staff shortage and says she will continue to work for as long as she can.
“It’s definitely scary being a pregnant mother. I also have a young daughter, a 17-month-old, at home. So every time I come home I am taking a risk,” she said.
Clayborne said she wanted to share her perspective as a doctor on the front lines to urge people to make a plan for how they want to be treated if they become critically ill.
“I really wanted to bring some awareness to some important topics that haven’t been as well covered in the media, that are really being highlighted by this crisis, and that is advanced care planning and for people to start thinking about, what they would want done if they become acutely ill,” she said.
She says anyone, even young people, can make an advance care plan.
“Make sure it is clear and specific, you don’t want your family to be burdened trying to make decisions for you in a crisis,” Clayborne said.
To make a plan, go to cdc.gov to search online resources for advance care plans that are state-specific or go to MyDirectives.com.
There’s a saying we often use on The Conversation Project team: “never worry alone.” This idiom is meant to encourage one another to express our concerns, if any, and to let our peers know how they can best support one another during challenging times. When we act on this sentiment, our team grows closer and our anxieties often subside. In the wake of COVID-19, we know there are many people who are experiencing different levels of anxiety. Well, we’re here to tell you that you don’t have to worry alone. We’ve compiled a sampling of resources to help you take care of yourself and others during this time. And, as you keep socially connected, we hope these resources will help you think through what matters most to you when it comes to medical care and help you talk about this with those that matter most to you. We hope these resources put your heart at ease.
With the generous support from the Cambia Health Foundation, The Conversation Project and Ariadne Labs teamed up to create this new tool to help people take action and be prepared. We can’t control how this pandemic plays out. But we can control who speaks for us if we’re unable to speak for ourselves, and we can take the time to make sure they know what matters most to us. Have the conversation today.
Manage Anxiety and Stress
Everyone reacts differently to the emotions surrounding COVID-19. CDC offers tips for coping with stress for the general public, parents, families and children, first responders, and people who have been released from quarantine.
This thoughtful piece highlights IHI’s Pedro Delgado’s reflections on the importance of human connection in a time of necessary physical separation.
Do you have article fatigue? Anxiety about everything going on right now? This is one piece worth putting at the top of your reading list. Great tips for how to process everything swimming around in our heads.
Affording healthy food is a challenge for many older Americans, but the spread of COVID-19 has made matters worse. Whether you’re facing difficult financial times or are unable to leave your home, there are resources from the National Council on Aging that may be able to help
Help for Older Adults and Family Caregivers
- Coronavirus Disease (COVID-19) Resources for Older Adults, Family Caregivers and Health Care Providers
As we all work together to ensure the safety of the public, and in particular, older adults and other individuals who are at increased risk from COVID-19, it is important to turn to trusted sources of information. This article offers resources for older adults, family caregivers and health care providers, including resources from AARP, Family Caregiver Alliance and others.
Most likely, dementia does not increase risk for COVID-19, just like dementia does not increase risk for flu. However, dementia-related behaviors, increased age and common health conditions that often accompany dementia may increase risk. This article offers tips for individuals caring for people living with dementia.
Talk with Your Children
An article that offers a list of ways you can talk to your kids about the coronavirus. This article is intended to help you introduce a challenging topic to your children in a simple way that they can easily digest.
So what should you tell kids about the coronavirus, and how? This article shares tips from a pediatrician, two psychologists, a pediatric infectious disease specialist and a safety expert.
Discuss Care Wishes and What Matters Most
Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.
We can’t control how this pandemic plays out. But we can control who speaks for us if we’re unable to speak for ourselves, and we can take the time to make sure they know what matters most to us. Have the conversation today.
- This Pandemic Is Personal: Why I’m using my confinement to reach out to people I care about, focus on gratitude, and be in the present.
A beautiful piece by Ira Byock, MD about how in midst of the COVID-19 pandemic, he has come to terms with his mortality and through this has been motivated to live life more fully. His piece highlights the importance about sharing what matters most to you with those who matter most.
This piece talks about the power of conversations, engaging patients in the gray area of trying to maximize length of life and quality of life and minimize suffering in the context of a serious illness. The goal is for both physicians and patients to arrive at a shared understanding of patients’ priorities should they be diagnosed with COVID-19.
Planning documents & websites
As part of the Patient and Family Support Resources page in the COVID-19 Toolkit put together by The Center to Advancing Palliative Care (CAPC), this tip sheet can be shared with families so they can plan ahead in the event they become ill, and make their care wishes known. Adapted by the National Patient Advocate Foundation from the PREPARE For Your Care program. Additional information includes links to CDC resources.
As PREPARE For Your Care notes, we are all in this together. You can do your part by making a plan. This plan can help you, your family, friends, and your medical providers.
It is more important than ever that your loved ones and healthcare team understand what matters most to you in the event that you become seriously ill. This guide, produced by Respecting Choices, is designed to help you think through your future healthcare choices.
A comprehensive set of resources and planning steps, as part of Cake’s collection of important conversations and end of life planning articles, whether you are worried about yourself or concerned about the physical and mental health of others. Resources include steps to create a Cake profile for free to discover, document, and share your end-of-life wishes.
MyDirectives’ easy-to-use platform lets people upload their paper directives, advance care plans and portable medical orders, create a digital advance care plan, even add audio and video messages, all for free. Documents are securely stored and can be easily shared 24/7 and pulled into any electronic medical record.
We know this isn’t an exhaustive list and there are many more resources to help. We will be updating this list as a living document and will be sharing new resources our team currently is developing to help you share what matters most. Please add any resources or articles that have helped you or those in your social circles in the comment section below. We are all in this together.