Finding the Right Words About COVID-19
A playbook of tips for health care workers in extraordinary times
Health care organizations in California and around the US are working incredibly hard to prepare for or respond to a surge of patients suffering from symptoms related to COVID-19. Appropriately, preparation has focused on trying to ensure adequate numbers of health care professionals and sufficient supplies and equipment in the right places at the right times as the demand grows.
That focus on numbers and logistics is essential. Also important but perhaps less widely acknowledged is the need to prepare our clinical workforce for the types of circumstances found in Washington and Italy and now emerging in New York, California, and other hot spots we read about every day. Clinicians and staff — in skilled nursing facilities, hospitals, and beyond — face the prospect of caring for increasing numbers of very sick people, some of whom will not recover. Talking with these patients and their loved ones with compassion and clarity about what is happening, what to expect, and what their options are is extremely important. To many clinicians, it is a daunting prospect.
Support is available: VitalTalk, a nonprofit organization dedicated to helping every clinician develop communication skills for serious illness, has created “COVID-Ready Communication Skills,” a customized, practical, specific set of tips and scripts for all clinicians caring for patients caught up in the COVID-19 crisis. CHCF and VitalTalk encourage the health care community to share these resources far and wide. Printable versions in multiple language are available online.
For those interested in online training for supporting people with serious illness, resources include the California State University Shiley Institute for Palliative Care, which has just made 20 self-paced online courses available for free until June 30, and the Center to Advance Palliative Care.
Additional COVID-19 tools and resources addressing communications, symptom management, and other issues are available on the Center to Advance Palliative Care’s COVID-19 Response Resources.
Thank you to Tony Back, MD, co-founder of VitalTalk, for permission to reprint this content, and to Dr. Back and his many collaborators noted at the bottom of this post for developing this thoughtful, practical guide.
VitalTalk Response Tips
Screening — When someone is worried they might be infected
Preferencing — When someone may want to opt out of hospitalization
Triaging — When you’re deciding where a patient should go
Admitting — When your patient needs the hospital, or the ICU
Counseling — When coping needs a boost, or emotions are running high
Deciding — When things aren’t going well, goals of care, code status
Resourcing — When limitations force you to choose, and even ration
Notifying — When you are telling someone over the phone
Anticipating — When you’re worrying about what might happen
Grieving — When you’ve lost someone
New talking maps for contingency and crisis — Proactive planning, resource limits, the last family call
Using These Tips
This is a super-concentrated blast of tips focused on COVID-19. We’ve pared away all the usual educational stuff because we know you’re busy. If you want more, check out VitalTalk’s videos and talking maps on fundamental communication skills, family conferences, and goals of care.
As the pandemic evolves, the caseload in your region will determine whether your clinic or hospital or institution is “conventional” mode (usual care), “contingency mode” (resources stretched, although care functionally close to usual), or “crisis” mode (demand outstrips resources). Most of the tips here are for conventional or contingency mode. If your region moves to crisis standards, how medicine is practiced will change dramatically — triage decisions will be stark, and choices will be limited. If needed, future versions of this doc will shift towards crisis. For now, please note that the crisis mode tips are marked [C] and should be reserved for a crisis designated by your institution. And remember that even in a crisis, we can still provide compassion and respect for every person.
Some of the communication tips in this document depict ways to explain resource allocation to a patient or family or caregiver. However, note that decisions about how resources are allocated — which criteria are used or where lines are drawn — should happen at the regional or state or country level. Rationing decisions should not be made at the bedside. In these tips, we steer away from complex discussions about rationing, and use language that is for lay people rather than for ethicists.
You Can Pitch In
Show this to the people you work with. Volunteer to edit so we can incorporate feedback in real time. Translate this into another language. Don’t just spread worries about how bad things will get — be the change you want to see. You can get in touch with us at [email protected] or [email protected].
|What they say||What you say|
|Why aren’t they testing everybody?||We don’t have enough test kits. I wish it were different.|
|Why do the tests take so long?||The lab is doing them as fast as they can. I know it’s hard to wait.|
|How come the basketball players got tested?||I can imagine it feels unfair. I don’t know the details, but what I can tell you is that was a different time. The situation is changing so fast that what we did a week ago is not what we are doing today.|
|What they say||What you say|
|I am worried about this new virus. What should I be doing?||You are right to be concerned. Here’s what you can do. Please limit your contact with others — we call it social distancing. Then you should pick a person who knows you well enough to talk to doctors for you if you did get really sick. That person is your proxy. Finally, if you are the kind of person who would say, no thanks, I don’t want to go to the hospital and end up dying on machines, you should tell us and your proxy.|
|I realize that I’m not doing well medically even without this new virus. I want to take my chances at home / in this long-term care facility.||Thank you for telling me that. What I am hearing is that you would rather not go to the hospital if we suspected that you have the virus. Did I get that right?|
|I don’t want to come to the end of my life like a vegetable being kept alive on a machine [in a long-term care facility or at home].||I respect that. Here’s what I’d like to propose. We will continue to take care of you. The best case is that you don’t get the virus. The worst case is that you get the virus despite our precautions — and then we will keep you here and make sure you are comfortable for as long as you are with us.|
|I am this person’s proxy / health care agent. I know their medical condition is bad — that they probably wouldn’t survive the virus. Do you have to take them to the hospital?||It is so helpful for you to speak for them, thank you. If their medical condition did get worse, we could arrange for hospice (or palliative care) to see them where they are. We can hope for the best and plan for the worst.|
|What they say||What you say|
|Why shouldn’t I just go to the hospital?||Our primary concern is your safety. We are trying to organize how people come in. Please fill out the questions online. You can help speed up the process for yourself and everyone else.|
|Why are you keeping me out of the hospital?||I imagine you are worried and want the best possible care. Right now, the hospital has become a dangerous place unless you really, really need it. The safest thing for you is to ______.|
|What they say||What you say|
|Does this mean I have COVID-19?||We will need to test you with a nasal swab, and we will know the result by tomorrow. It is normal to feel stressed when you are waiting for results, so do things that help you keep your balance.|
|How bad is this?||From the information I have now and from my exam, your situation is serious enough that you should be in the hospital. We will know more in the next day, and we will update you.|
|Is my grandfather going to make it?||I imagine you are scared. Here’s what I can say: because he is 90, and is already dealing with other illnesses, it is quite possible that he will not make it out of the hospital. Honestly, it is too soon to say for certain.|
|Are you saying that no one can visit me?||I know it is hard to not have visitors. The risk of spreading the virus is so high that I am sorry to say we cannot allow visitors. They will be in more danger if they come into the hospital. I wish things were different. You can use your phone, although I realize that is not quite the same.|
|How can you not let me in for a visit?||The risk of spreading the virus is so high that I am sorry to say we cannot allow visitors. We can help you be in contact electronically. I wish I could let you visit, because I know it’s important. Sadly, it is not possible now.|
|What they say||What you say|
|I’m scared.||This is such a tough situation. I think anyone would be scared. Could you share more with me?|
|I need some hope.||Tell me about the things you are hoping for. I want to understand more.|
|You people are incompetent!||I can see why you are not happy with things. I am willing to do what is in my power to improve things for you. What could I do that would help?|
|I want to talk to your boss.||I can see you are frustrated. I will ask my boss to come by as soon as they can. Please realize that they are juggling many things right now.|
|Do I need to say my goodbyes?||I’m hoping that’s not the case. And I worry time could indeed be short. What is most pressing on your mind?|
|What they say||What you say|
|I want everything possible. I want to live.||We are doing everything we can. This is a tough situation. Could we step back for a moment so I can learn more about you? What do I need to know about you to do a better job taking care of you?|
|I don’t think my spouse would have wanted this.||Well, let’s pause and talk about what they would have wanted. Can you tell me what they considered most important in their life? What meant the most to them, gave their life meaning?|
|I don’t want to end up being a vegetable or on a machine.||Thank you, it is very important for me to know that. Can you say more about what you mean?|
|I am not sure what my spouse wanted — we never spoke about it.||You know, many people find themselves in the same boat. This is a hard situation. To be honest, given their overall condition now, if we need to put them on a breathing machine or do CPR, they will not make it. The odds are just against us. My recommendation is that we accept that he will not live much longer and allow him to pass on peacefully. I suspect that may be hard to hear. What do you think?|
|What they say||What you say, and why
|Why can’t my 90-year-old grandmother go to the ICU?||This is an extraordinary time. We are trying to use resources in a way that is fair for everyone. Your grandmother’s situation does not meet the criteria for the ICU today. I wish things were different. [C]|
|Shouldn’t I be in an intensive care unit?||Your situation does not meet criteria for the ICU right now. The hospital is using special rules about the ICU because we are trying to use our resources in a way that is fair for everyone. If this were a year ago, we might be making a different decision. This is an extraordinary time. I wish I had more resources. [C]|
|My grandmother needs the ICU! Or she is going to die!||I know this is a scary situation, and I am worried for your grandmother myself. This virus is so deadly that even if we could transfer her to the ICU, I am not sure she would make it. So we need to be prepared that she could die. We will do everything we can for her. [C]|
|Are you just discriminating against her because she is old?||I can see how it might seem like that. No, we are not discriminating. We are using guidelines that were developed by people in this community to prepare for an event like this. The guidelines have been developed over the years, involving health care professionals, ethicists, and lay people to consider all the pros and cons. I can see that you really care about her. [C]|
|You’re treating us differently because of the color of our skin.||I can imagine that you may have had negative experiences in the past with health care simply because of who you are. That is not fair, and I wish things had been different. The situation today is that our medical resources are stretched so thin that we are using guidelines that were developed by people in this community, including people of color, so that we can be fair. I do not want people to be treated by the color of their skin either. [C]|
|It sounds like you are rationing.||What we are doing is trying to spread out our resources in the best way possible. This is a time where I wish we had more for every single person in this hospital. [C]|
|You’re playing God. You can’t do that.||I am sorry. I did not mean to give you that feeling. Across the city, every hospital is working together to try to use resources in a way that is fair for everyone. I realize that we don’t have enough. I wish we had more. Please understand that we are all working as hard as possible. [C]|
|Can’t you get 15 more ventilators from somewhere else?||Right now the hospital is operating over capacity. It is not possible for us to increase our capacity like that overnight. And I realize that must be disappointing to hear. [C]|
|How can you just take them off a ventilator when their life depends on it?||I’m so sorry that her condition has gotten worse, even though we are doing everything. Because we are in an extraordinary time, we are following special guidelines that apply to everyone here. We cannot continue to provide critical care to patients who are not getting better. This means that we need to accept that she will die, and that we need to take her off the ventilator. I wish things were different. [C]|
|What they say||What you say|
|Yes, I’m his daughter. I am five hours away.||I have something serious to talk about with you. Are you in a place where you can talk?|
|What is going on? Has something happened?||I am calling about your father. He died a short time ago. The cause was COVID-19.|
|[Crying]||I am so sorry for your loss. [Silence][If you feel you must say something: Take your time. I am here.]|
|I knew this was coming, but I didn’t realize it would happen this fast.||I can only imagine how shocking this must be. It is sad. [Silence] [Wait for them to restart.]|
|What you fear||What you can do|
|That patient’s son is going to be very angry.||Before you go in the room, take a moment for one deep breath. What’s the anger about? Love, responsibility, fear?|
|I don’t know how to tell this adorable grandmother that I can’t put her in the ICU and that she is going to die.||Remember what you can do: You can hear what she’s concerned about, you can explain what’s happening, you can help her prepare, you can be present. These are gifts.|
|I have been working all day with infected people, and I am worried I could be passing this on to the people who matter most.||Talk to them about what you are worried about. You can decide together about what is best. There are no simple answers. But worries are easier to bear when you share them.|
|I am afraid of burnout, and of losing my heart.||Can you look for moments every day where you connect with someone, share something, enjoy something? It is possible to find little pockets of peace even in the middle of a maelstrom.|
|I’m worried that I will be overwhelmed and that I won’t be able to do what is really the best for my patients.||Check your own state of being, even if you only have a moment. If one extreme is wiped out, and the other is feeling strong, where am I now? Remember that whatever your own state, that these feelings are inextricable to our human condition. Can you accept them, not try to push them away, and then decide what you need?|
|What I’m thinking
||What you can do
|I should have been able to save that person.||Notice: Am I talking to myself the way I would talk to a good friend? Could I step back and just feel? Maybe it’s sadness, or frustration, or just fatigue. Those feelings are normal. And these times are distinctly abnormal.|
|OMG, I cannot believe we don’t have the right equipment / how mean that person was to me / how everything I do seems like it’s blowing up.||Notice: Am I letting everything get to me? Is all this analyzing really about something else? Like how sad this is, how powerless I feel, how puny our efforts look? Under these conditions, such thoughts are to be expected. But we don’t have to let them suck us under. Can we notice them, and feel them, maybe share them?
And then ask ourselves: Can I step into a less reactive, more balanced place even as I move into the next thing?
The COVID-as-a-starter preferences or goals talk for patients in a health care setting.
Take a deep breath (yourself!).
“How are you doing with all this?” (Take their emotional temperature.)
ASK ABOUT COVID
“What have you been thinking about COVID and your situation?”
LAY OUT ISSUES
“Here is something I want us to be prepared for.” / “You mentioned COVID. I agree.”
“Is there anything you want us to know if you got COVID / if your COVID gets really bad?”
MOTIVATE THEM to choose a proxy and talk about what matters
“If things took a turn for the worse, what you say now can help your family / loved ones.”
“Who is your backup person — who helps us make decisions if you can’t speak? Who else?” (Having 2 backup people is best.)
<p“We’re in an extraordinary situation. Given that, what matters to you?” (About any part of your life? About your health care?)
Make a recommendation — if they would be able to hear it. “Based on what I’ve heard, I’d recommend _______. What do you think?”
Watch for this — acknowledge at any point.
“This can be hard to think about.”
RECORD THE DISCUSSION
Any documentation — even brief — will help your colleagues and your patient.
“I’ll write what you said in the chart. It’s really helpful, thank you.”
[C] FOR CRISIS ONLY
Talking about resource allocation (i.e., rationing).
SHOW THE GUIDELINE
“Here’s what our institution/system/region is doing for patients with this condition.”
(Start with the part directly relevant to that person.)
HEADLINE WHAT IT MEANS FOR THE PATIENT’S CARE
“So for you, what this means is that we care for you on the floor and do everything we can to help you feel better and fight this illness. What we won’t do is to transfer you to the ICU, or do CPR if your heart stops.
(Note that you talk about what you will do first, then what you won’t do.)
AFFIRM THE CARE YOU WILL PROVIDE
“We will be doing [the care plan], and we hope you will recover.”
RESPOND TO EMOTION
“I can see that you are concerned.”
EMPHASIZE THAT THE SAME RULES APPLY TO EVERYONE
“We are using the same rules with every other patient in this hospital/system/institution. We are not singling you out.”
NOTE: This talking map is used only when an institution has declared use of crisis standards of care, or a surge state. When the crisis standards or surge are discontinued, this map should no longer be used.
When you need to talk to a family member by phone or video through saying goodbye to a patient who is in their last hours or minutes.
LEAD THE WAY FORWARD
“I am [Tony], one of the [professionals] on the team.”
“For most people, this is a tough situation.”
“I’m here to walk you through it if you’d like.”
OFFER THE FOUR THINGS THAT MATTER MOST TO PEOPLE
“So we have the opportunity to make this time special.”
“Here are five things you might want to say. Only use the ones that ring true for you.”
“Please forgive me”
“I forgive you”
“I love you”
“Do any of those sound good?”
VALIDATE WHAT THEY WANT TO SAY
“I think that is a beautiful thing to say.”
“If my [daughter] were saying that to me, I would feel so valued and so touched.”
“I think he/she can hear you even if they can’t say anything back.”
“Go ahead, just say one thing at a time. Take your time.”
“I can see that he/she meant a lot to you.”
“Can you stay on the line a minute? I just want to check on how you’re doing.”
Your Comments and Feedback
Thank you all for contributing edits and ideas — they are extremely valuable, and we have incorporated most of them. If I did not incorporate your suggestion and you are wondering, you can email me at [email protected]. Please note that this guide is designed as a completely standalone guide for clinicians, and thus some recommendations are slightly different than what we would teach in the context of an in-person or live virtual course.
|Alaa Albashayreh, MSN, RN
Patrick Archimbault, MD
Bob Arnold, MD
Darren Beachy, MTS
Yvan Beaussant, MD
Brynn Bowman, MPA
Colleen Christmas, MD
Randy Curtis, MD, MPH
James Fausto, MD
Lyle Fettig, MD
|Jonathan Fischer, MD
Michael Fratkin, MD
Christina Gerlach, MD
Marian Grant, DNP
Caroline Hurd, MD
Margaret Isaac, MD
Josh Lakin, MD
Elke Lowenkopf, MD
Joanne Lynn, MD
Nick Mark, MD
|Diane Meier, MD
Susan Merel, MD
Tona McGuire, PhD
Kathryn Pollak, PhD
James Tulsky, MD
Tali Sahar, MD
Vicki Sakata, MD
The John A. Hartford Foundation
Cambia Health Foundation
VitalTalk is a 501(c)3 nonprofit social impact startup dedicated to making communication skills for serious illness part of every clinician’s toolbox. This content will be in the free VitalTalk Tips app for iOS and Android very soon.