Hospitals across the country are in different stages of new coronavirus' curve: some communities seem to be flattening the curve, others are swamped with Covid-19 patients, and others have very few cases with an expected apex in late April.
The virus' impact on patients is equally varied. About 25% of the population who would test positive for coronavirus are asymptomatic. Of those with symptoms, around 80% continue to experience relatively mild cases not requiring hospitalization. But what about that other 20% who become ill enough to require hospitalization and potentially require intensive care? Initially, we thought most of those patients would require a ventilator to assist their breathing. Now some are questioning whether a ventilator is the best treatment.
In any case, one thing has become clear and that is patients with Covid-19 can deteriorate very quickly. The uncertainty around the disease makes it imperative that providers have a conversation with that 20% about their wishes for care and discuss whether they would want to go on a ventilator when their oxygen saturation drops low enough. For hospital leaders, it's equally important that organizations have a mechanism in place to assure these conversations are occurring.
How to talk to your patients about ventilators
The best practice is to ascertain a person's wishes for care while they are well enough to tell you. Remember, when the patient has capacity, they are the final say on their care and putting someone on a ventilator requires informed consent. Below, I outline six steps you can follow to have that important conversation.
Step 1. Establish the setting
Covid-19 has changed many things about the way we provide care today, which means it's very likely you could be having this conversation while you're several feet away from the patient and unrecognizable under all your personal protective equipment. For many providers, this will mark a change from the typical in-person conversation in which you are at eye-level with the patient and close enough to touch an arm or hold their hand.
Or perhaps you're not even in the room with the patient, but are having the discussion via phone or video chat. In either scenario, many of the non-verbal expressions that are typically so important to our communication will be lost. That's why it's essential for providers to be very aware of their tone of voice and to consciously slow their rate of speech. You don't want to sound rushed or stressed, you want to speak clearly, calmly, and show empathy.
Consider phrases such as:
- "You have tested positive for the new coronavirus or the disease we now call Covid-19"; and
- "It is important we talk about what may happen in the future and what health care decisions we may be faced with."
Step 2. Ask what the patient understands
A person cannot truly make health care decisions if they do not first understand their diagnosis or diagnoses. As the provider, it's incumbent on you to be certain that the individual has the capacity to make decisions. In other words, are they aware enough about their condition to know what they are considering and the potential consequences?
Consider phrases such as:
- "Would you tell me what you know about your condition?"; or
- "What is your understanding of the condition?"
If you have a patient with multiple morbidities ask:
- "In addition to being diagnosed with Covid-19, do you have other illnesses?";
- "Have you heard anything about how having [high blood pressure, diabetes, or whatever] affects Covd-19?"
Step 3. Discuss the patient's expectations
It is difficult to imagine someone who has not heard about or been exposed to Covid-19 in recent months. However, you have no idea how much the patient in front of you has followed the issue, and more importantly, what information they have seen.
Is this someone who has seen enough of the news to know approximately 80% of cases may be very mild? Or, is this someone who has followed updates closely and can tell you just how many ventilators a state is looking for and how many people are dying a day?
Listen very carefully to what the patient says because it may give you many clues about their expectations and their desires. For instance, it's during this part of the conversation you may hear comments that help you understand the patient's beliefs about life. You might hear someone reflect they have had a life well lived and just want to be kept comfortable or you may hear this person is a fighter and will want you to do anything possible to fight until there is nothing else to do.
It's also possible the patient may want you to make recommendations for their care. If this occurs, be factual and clear about the patient's options and be honest about what scientists know and don't know about this disease.
Consider phrases such as:
- "Given what you know about your health and Covid-19, do you have any particular expectations about what may happen?"
- "Do you have things you want to do right now and are afraid you can't?"
- "Can you tell me what makes you feel this way?"
Step 4. Discuss intubation and cardiac resuscitation
Often when you talk with patients and/or families about resuscitation orders, we discuss the cardiac and pulmonary issues together; ergo, do not resuscitate. With what we are learning about the new coronavirus and how it attacks the lungs, it may make sense to discuss intubation and being dependent upon a ventilator separate from chest compressions. A patient may choose to be on a ventilator but not want chest compressions or vice versa. Listen; be present; and remember that the choice is theirs, not yours.
But when you have this conversation it's important that you share the facts as you know them and do not use leading phrases such as, "Do you want us to do everything for you?" or "Should we just let nature take its course – you do have other illnesses?"
Instead, consider phrases such as:
- "It is important we take care of you the way you want to be cared for."
- "You may have heard about a shortage of ventilators on the news. We have ventilators here. However, what I would like to know is how you feel and think about being on a ventilator. That is part of why I wanted to have this conversation now rather than if we get into an emergency situation and do not know what you wanted."
- "I want to be sure you understand the ventilator is not a cure. From China, Italy, now the United States, the numbers are about the same. For all the people on ventilators, only about 20 – 30% live to leave the hospital. This includes young and old, with or without other illnesses."
During this conversation, it's also important to summarize what you hear the patient saying:
- "I want to make sure I understand you correctly. If you should become critically ill from the coronavirus, we will do everything we can to keep you comfortable. But, we will not put a breathing tube down your throat or do chest compressions"; or
- "If I heard you correctly, you understand you could become very ill from the coronavirus. You also see yourself as a fighter and want us to do everything we can to keep you alive. If your lungs get to the point they need help, we will intubate you which means put a breathing tube down your throat and connect that to a ventilator. We will give you medication to ease as much pain or discomfort you may be feeling as we can."
Step 5. Respond to emotions
Even though many people think about being severely ill, possibly dying, the current epidemic and constant news reports about patients dying makes it real. Be prepared for patients to have strong emotions when they learn about their diagnosis and hear about their care options.
During this part of the conversation, sometimes the best you can do is be present and quiet. Listen to the patient's concerns and do not dismiss their emotions.
Step 6. Establish a plan—get it clearly documented!
Before you end the conversation, take another moment to reinforce what you discussed. Emphasize the excellent caregivers that are present and that they will care for the person as they wish. When you're writing your orders be specific; DNR only addresses resuscitation and no other aspects of care.
You may want to write to continue maximal medical therapies and then specify the patient's wishes for intubation or cardiac resuscitation. You may not have any family present for this discussion and when they hear their loved one's desires, they may disagree. Be prepared to explain the patient understood and what you talked about.
What about you and your loved ones?
I know these are not easy conversations to have, but take this moment to check in with your own wishes and those of your loved ones. One of the greatest gifts you can give your loved ones is to let them know how you want to be cared for if you become critically ill, and you should also understand their wishes. Ask if they have any questions about what is happening with patients who contract Covid-19. Let them know that when they are ready to talk about their wishes, you are ready to listen.