While many people have managed to stockpile food, medicine and cleaning supplies in the face of the pandemic, we as physicians have found that too few are prepared for COVID-19 in one key way: what to do if you need to make medical decisions for a critically ill loved one. High-risk patients who survive intensive, life-sustaining measures such as intubation with a ventilator are often left with profound impairments, including the inability to eat, breathe or communicate independently.
For that reason, family members should understand their loved ones’ goals and wishes for treatment in the event of critical illness. The COVID era has heightened the need for these conversations, as initial studies show that intubated COVID-19 patients often do not survive.
Here is how to be ready, should your family face such a situation.
To begin with, it’s important to understand that our health care system has a bias towards action. Doctors are almost always ethically and legally obligated to provide life-sustaining treatments such as mechanical ventilation and cardiopulmonary resuscitation, even when these interventions will not restore meaningful function or are unlikely to extend life—unless someone acting as a health care proxy for the patient tells us to stop.
Take, for example, Mr. B, a 79-year-old man who recently came into the emergency department complaining of fever, cough and difficulty breathing. It was immediately clear to his doctor how gravely ill he was. Mr. B was rapidly becoming too weak to keep breathing on his own, even with the help of additional oxygen. The emergency room doctors needed to know immediately whether to place a breathing tube and connect Mr. B to mechanical ventilation.
Without a breathing tube, Mr. B could be kept comfortable, but would likely die within hours. However, with multiple underlying medical problems including diabetes and prior heart attacks, he was unlikely to successfully come off the ventilator, much less live independently again. Because Mr. B was confused and exhausted he was unable to have a discussion about the implications of this decision. So the emergency room team called the patient’s two daughters, his legal surrogate decision-makers, and posed the question to them. They were shocked and overwhelmed. They had never discussed their fathers’ wishes with him. Unfortunately, Mr. B’s breathing worsened so quickly that the doctors were forced to intubate him before his daughters had a chance to think through their decision.
Mr. B’s story is far too common.
Despite the reality that most families will deal with serious illness at some point, relatively few make plans for medical decision-making. They might feel that these conversations are too macabre or that they’re inviting misfortune. But in fact, such discussions are the most potent tool in ensuring that our loved ones get medical care consistent with their values. So it can be helpful to begin a conversation with a “warning shot” along the lines of “Mom, I’d like to ask you about a few rather serious questions about your health. Is this an okay time?”
Once you begin, the answers to three simple questions will go a long way in the event of critical illness.
Whom do you want making decisions for you? Having a designated decision-maker for family members who may become incapacitated is key. While state laws for automatically appointing a surrogate decision-maker vary, families can take ownership over this process by identifying someone as a formal health care proxy—someone with the authority to make decisions when the person who appointed them can’t do so. Even without formal paperwork, just designating a point person can be very helpful.
In addition to making decisions, this person should also serve as the recipient and keeper of important health information. Medical communication functions much more effectively when doctors can focus their conversations on one person rather than disseminating information piecemeal to multiple family members.
What is the minimum level of functionality that is acceptable to you? Although every medical situation is unique, understanding a loved one’s underlying values can help families make decisions about situations they can’t foresee. You can have open-ended, exploratory conversations around issues like:
• What makes life meaningful to you?
• If you were to become seriously ill, what would be your biggest worry?
• Are there religious or spiritual concerns that would impact the decisions you would make about your health care?
• What is the minimum level of function that you would tolerate if you became very sick or injured?
Questions like these give the opportunity for value-oriented discussions that can guide family decision-making and doctors’ recommendations down the line.
Which do you value more: quality of life or length of life? Of course, we all want both. But both are not always possible, which is why these situations can be so agonizing. This binary may seem artificial, but it can help clarify a loved one’s values and facilitate discussing specific treatments like mechanical ventilation or cardiopulmonary resuscitation. There are formalized ways to codify these wishes that vary by state, and we recommend visiting The Conversation Project for state-specific information.
During and after these conversations, it is important to remember that doctors and nurses will care for your loved one no matter what. Choosing to forgo CPR or intubation and allowing for natural death does not mean that the patient is abandoned by their health care teams. On the contrary, patients at the end of life who focus on comfort receive care that is tailored to their needs. In one recent example, it was clear a patient was near the end. After talking with the family, we were able to focus our efforts on FaceTiming with the patient’s wife and a Spanish-speaking priest, which brought great comfort to everyone. We would have been unlikely to do this if we had to focus on drawing emergency labs, paging a respiratory therapist and ordering a chest x-ray.
Answering these three questions is the best thing you can do for your family right now, especially with those who are older or have existing medical problems. These conversations can be difficult. They take strength and love. But they are far better to do outside the hospital, and they can be completed in the time it takes to make a Costco run.