Why It Matters
Many clinicians are anxious about having advance care planning discussions with their older or seriously ill patients at the best of times. Now, amid the COVID-19 pandemic, care providers may be even more reluctant to talk about what matters most to patients should they become seriously ill (with COVID-19 or any other illness), worried that they will add to their fears.
Not having these conversations well before they are necessary, however, takes control and choice out of the hands of the individual patient and may result in medical care that may not reflect what is most important to the patient. Without knowing what the patient would want, the result is the default provision of critical care, ventilatory support and, often, CPR.
Given the choice, many older adults — as well as those with serious medical illness (such as dementia, organ system failure, or cancer) — would decline such treatment in favor of remaining in a familiar environment with loved ones, as long as symptom management and caregiver support could be provided at home. The only way to know for sure is to ask in advance of an emergency. These days, because of the need for physical distancing, such discussions may have to take place by phone or during telehealth visits.
Patients and their families know how serious the coronavirus can be. They have read the news articles on the high mortality rate of COVID-19 infected people requiring ventilator support. (For example, the mortality rate was 88 percent in a case series from New York City recently published in JAMA.)
The experiences of some clinicians can offer hope and guidance during these difficult times. On both the national and local levels, clinicians have been finding that patients are often relieved and grateful when given the opportunity to proactively discuss their priorities for medical care should they get sick in the future with COVID-19.
Sooner is Better Than Later
Even without formal telehealth capacity, a simple phone call from a trusted clinician to the patient and family signals the clinician’s concern, commitment to do the best for the patient, and genuine interest in the patient’s preferences and priorities. If the patients are unable to speak for themselves, the discussion is with the family or other trusted loved ones, health care proxy, or surrogate decision-maker.
Here are some tips to consider:
- Use the news as a talking point. Introduce yourself and the purpose of your call. Ask permission to talk about COVID-19. Reflect on feelings the patient may already be experiencing: I’m talking to you now to understand what your priorities are just in case you get sick with the coronavirus. With everything we’re seeing on TV these days, I imagine you may have thought about this.
- Ask two key questions. Have you thought about who you would trust to make medical decisions for you if you got too sick or were unable to make your own? Does that person know that you trust them to serve in this role? If the patient has not designated a health care proxy, the clinician should ask if the intended person can join the call or if we can contact that person together Give the patient time to reflect and allow silence before expecting an answer to these questions.
- Be clear about the lower likelihood of survival for many adults This discussion is more explicit than a typical advanced care planning conversation. It is frank about the possibility of bad outcomes (including death) in populations like your patient. The clinician must pause and allow the patient (or their family) to process this information, and express the emotions prompted by the pandemic and its implications for the patient. I often say, “Some of my patients tell me that if they were so sick that they were very unlikely to recover enough to recognize and interact with their family, that — in that situation — they would want medical care focused on making sure they are comfortable. Other patients tell me that no matter how low the likelihood of recovery, they want me to do everything possible to prolong their life. Which would you prefer?”
- Offer the patients three decision options:
- I’m not sure what I want to do. I need time to think about this. In this circumstance, ask the patient if you can call them back tomorrow for further conversation. It’s important to give people time to process and consider their options.
- Do whatever you have to try to keep me alive. If this is the person’s decision, the clinician should confirm with the patient or the patient’s family that they want to be placed on a ventilator in the ICU if their breathing worsens.
- I would never want to be on one of those machines. If my time comes, keep me comfortable, and let me go.
This last option is what many people are choosing when their clinician offers them a choice. Patients are often relieved to be having this conversation because they are already thinking about these issues in exactly these terms. Whatever the patient prefers, document it in the medical record in a place where other clinicians can find the information.
Finding the Right Words
The Center to Advance Palliative Care and VitalTalk have developed and disseminated “talking maps” or scripts to make it easier for clinicians — who are under enormous pressures and stress because of the coronavirus — to conduct these conversations with patients and their families. CAPC telehealth resources can help with set up of telehealth service delivery. Our patients need to hear from us about COVID-19. Some are afraid and worried. Many will be relieved and grateful to talk to us about it.
Diane Meier, MD, is the director of the Center to Advance Palliative Care and a geriatrician and palliative medicine physician at Mount Sinai Health System.
You may also be interested in:
CAPC COVID-19 Response Resources — Includes communication scripts and conversation videos
VitalTalk COVID Ready Communication Playbook — How to talk about difficult topics related to COVID-19 in English and translated into multiple languages, including Arabic, Chinese, Portuguese, Spanish, and Vietnamese
Being Prepared in the Time of COVID-19: Three Things You Can Do Now — This conversation guide — developed by The Conversation Project and Ariadne Labs — offers support when making difficult choices in the face of serious illness.