New Guide: Being Prepared in the Time of COVID-19
Click here to download a guide specific to COVID-19. 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 this conversation today.
This guide can also be downloaded in Spanish here.
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
Starting the Conversation:
Unsure how to start a conversation with your loved ones about your wishes and what matters most? Check out this blog post on Thoughtful Icebreakers That Lead to Meaningful Conversations for ideas and samples of ice breakers you can use to broach this important topic.
Who Will Speak For You? How to choose a health care proxy
Choosing a health care proxy – the person who will make decisions about your medical care if you become unable to make them for yourself – is just as important today. This user-friendly guide offers facts and tips necessary to make sound decisions about choosing a health care proxy.
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.
Manage Anxiety and Stress
- The CDC: Resource to 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.
- IHI: Sticking Together While Staying Apart: This thoughtful piece highlights IHI’s Pedro Delgado’s reflections on the importance of human connection in a time of necessary physical separation.
- That Discomfort You’re Feeling is Grief: 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.
- Where to Get Food Help Now: 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 page from the John A. Hartford Foundation offers resources for older adults, family caregivers and health care providers, including resources from AARP, Family Caregiver Alliance and others.
- Alzheimer’s Association: Coronavirus (COVID-19): Tips for Dementia Caregivers: 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
- How to Talk to Your Kids About Coronavirus: 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.
- How to Talk to Kids About Coronavirus: 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
- A family wonders if they should hope a loved one with COVID-19 lives or help him die: A family’s Covid-19 dilemma – painful treatment or peaceful death – and the conversations about care wishes that helped bring clarity in midst of deep heartbreak.
- Covid or No Covid, It’s Important to Plan: Having a plan in place, one that doesn’t sugarcoat reality, is the best preparation for ensuring that you are treated as you would wish. It also provides needed clarity to those important to you, as we all navigate this pandemic together.
- It’s Time to Talk about Death: 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.
- Do your loved ones a favor. Find out now how they want to die: 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.
- In the midst of the coronavirus pandemic, we must have those serious illness conversations: 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.
- We must prepare for what’s next: when we and our loved ones become ill: This piece, written by Dr. Leana S. Wen, focuses on why it’s important to plan ahead for what will happen if you or a loved one is diagnosed with COVID-19 and the steps you can take to ensure you are prepared.
- Do I want a ventilator? Coronavirus prompts more people to consider, or revisit, end-of-life care: The COVID-19 pandemic has prompted huge numbers of people, even doctors, to consider or revisit their end-of-life wishes. This piece by The Boston Globe talks about why Massachusetts General Hospital residents are recording their health care proxies, and why you should be doing it too.
- Coronavirus And Advance Directives: Decisions You Need To Make Now: The COVID-19 pandemic has pushed the importance of advance directives to the forefront of people’s minds. This Forbes piece discusses some common misconceptions people have about advance directives, as well as specific examples of how you can start these important conversations with those who matter most.
- No time like the present: End-of-life plans and the pandemic: In the age of COVID-19, people are beginning to understand the deep importance of planning ahead. This Washington Post article highlights the increase in end-of-life planning in light of the pandemic.
- How has COVID-19 changed the way we think (and talk) about death in America? Americans are thinking more about mortality in the time of coronavirus. Find out how this new awareness—and the meaningful end-of-life conversations and planning it can spark—can improve our lives, calm our fears, and take better care of those who matter in our lives.
- Thoughtful Icebreakers That Lead to Meaningful Conversations: Unsure how to start a conversation with your loved ones about your wishes and what matters most? Check out this blog post for ideas and samples of ice breakers you can use to broach this important topic.
- Ritual and Grief in the Time of COVID-19: In a thoughtful piece about the preservation of rituals in the midst of COVID-19, Kelly McCutcheon Adams, MSW, LICSW discusses how to creatively sustain and honor rituals in today’s global climate.
Planning documents & websites
- Coronavirus Disease 2019 (COVID-19) Shared Decision-Making Tool: The National Hospice and Palliative Care Organization has published a new tool to help with that decision in the era of Covid-19. It factors in age, comorbidities and current symptoms, and helps determine your likelihood of survival should you contract the virus. It may also get you thinking about your preferences even if you aren’t infected with the coronavirus.
- COVID-19 Resources Page: A comprehensive compilation from Honoring Choices® Virginia of recorded webinars, official updates, and media coverage related to advance care planning and COVID-19, including ACP toolkits and resources for individuals and families as well as clinicians and organizations.
- Planning Steps for Patients & Families During the COVID-19 Crisis: 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.
- Making a Medical Plan During COVID-19: 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.
- Respecting Choices: Guide for High-Risk Adults: 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.
- CAKE: COVID-19 Resources: 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: 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.
- COVID-19 Response and Resources: As COVID-19 is dramatically impacting the health and wellbeing of people and families living in our communities, the Cambia Health Foundation furthers its commitment to support immediate community needs and emerging issues that may result from the long-term health and socio-economic impacts of the pandemic. This page offers links to a comprehensive set of resources, including those for caregivers.
Resources for Healthcare and Community Groups
- Sampling of COVID-19 Resources for Healthcare and Community Leaders: There is a flood of targeted COVID-related resources circulating right now. Many healthcare and community-based organizations are posting resources to help their constituents We wanted to share some examples that have come across our desk recently that you may wish to check out too.
- Resources for Nursing Facilities: This website contains myriad resources to help long-term care facilities, such as nursing homes, in navigating the era of COVID-19.
- Supporting Healthcare Staff Wellbeing: We’ve heard from several champions who work with or within healthcare organizations, requesting any resources we know of that may support staff wellbeing. We have a couple resources that may offer ways to help support staff wellbeing.
- How to Talk About COVID-19 and Your Patients Wishes Regarding Serious Illness Care: Many clinicians are hesitant to ask about patients’ preferences if they get sick with COVID-19, yet the patients are often grateful for the conversation. This blog post talks about how to find the right words when navigating difficult conversations with patients – especially when you can’t be face-to-face.
- How Policy During the COVID-19 Era has Impacted Advance Care Planning, and What Still Needs to be Done: The Coalition to Transform Advanced Care (C-TAC) describes how advance care planning policy has changed during the pandemic and what additional policy changes should be made, like removing deductible payments and restoring the Patient Self-Determination Act requirements.
- Death, Grief, and Funerals in the COVID age: This paper published by the Virtual Funeral Collective and the Global COVID-19 Relief Coalition contains resources and strategies for helping people develop new rituals to honor those who die in the COVID-19 era. These resources are designed to help you support your clients, patients, communities, and yourself during this stressful time.
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. We are all in this together.