Patients, not doctors, should decide how they die.

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A ventilator during a medical instruction at the Universitaetsklinikum Eppendorf in Hamburg, March 25, 2020.
A precious fan.

AXEL HEIMKEN / Getty Images

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Consider the nightmare scenario that you have heard many times to date: Twelve COVID-19 patients arrive in intensive care requiring emergency mechanical ventilation. Only six fans are available. Which patients should physicians place on respirators? Which patients should die?

It is a nightmare in two parts: one is the overflowing hospital, the vision of sick patients awaiting medical care or equipment that they may not receive in time. The other is decision-making, where doctors have to choose who lives and who dies.

The United States is now closer to this scenario than we have ever been in the history of modern medicine. But there might be a way to avoid it, or at least mitigate it considerably – a strategy that has nothing to do with testing, treating, or controlling coronavirus. It’s a strategy that is cheap, fast, and not really drastic: make sure every American has an advance directive.

An advance directive (sometimes called a living will) is a document detailing a patient’s wishes in the event of a serious illness. They can vary widely, but a standard advance directive always answers the question of whether or not the person wants life support, that is. drugs and machines to keep the person alive in the event of organ system failure.
In many cases, and certainly in the case of COVID-19, the most critical component of life support is mechanical ventilation.

How would you respond if you were asked the following question: In the next 12 months, if you develop a life-threatening respiratory disease that requires mechanical ventilation (either from COVID-19 or another disease), prefer -you:

A) Mechanical ventilation and intensive care, in order to maintain life by all medically effective means

B) A time-limited trial of mechanical ventilation, then transition to other lighter treatments

C) No mechanical ventilation or restrictive treatments of any kind – do you just focus on comfort?

This question may seem difficult or complicated to answer, and for most people it is. Several factors will likely influence your choice, including your age, the length of your life expectancy, your religious or spiritual beliefs, your family, and other relationships. Given this difficulty and the rapid escalation of the COVID-19 crisis, the experts rightly invite us to raise the subject with our families and loved ones. But to have a real impact – both for individuals and for the general population – this conversation cannot be only between family members. We need to go further and make sure everyone is talking to a healthcare professional. Now.

A doctor – or in some cases a nurse practitioner or medical assistant – can usually answer important questions that family members cannot answer. For example, what a mechanical ventilator looks like, what are the complications and risks of ventilation, and what is the likelihood that you (with your particular combination of risks and health problems) will survive a serious respiratory illness. A doctor should also screen for untreated depression and suicidality. Most importantly, a doctor or health care professional should document the decision for other doctors, so that these doctors can be sure that the decision is well informed and that they should do everything they can to honor it.

Such conversations could start now by phone. Emergency and intensive care doctors may be inundated with patients, but there are many doctors whose clinics were effectively closed by the COVID crisis: ophthalmologists, surgeons, maybe even your own primary care provider. Many of these doctors have been trained in medical school to have end-of-life discussions, even if they no longer do so regularly. This is not a perfect scenario, but it is much better than forcing doctors to make life and death decisions without knowing the wishes of the patients, or without giving the patients enough time to reflect on those wishes. .

State governments, which certainly have an interest in keeping their hospitals and critical care units from overflowing, should take the initiative. State departments of public health could start by sending a postcard to each registered address, as well as postcards for storage in grocery stores and doctors’ offices. The card would include a multiple choice question like the one above, a space for your name and signature, and a space to indicate the name of the doctor with whom you discussed your decision. (Something similar to this postcard already exists in most states. Although it is only intended for people at high risk of a life-threatening event. In my state of California, it calls a POLST and it is printed on bright pink paper.)

State public health services could then create online registers where health care providers could register to participate and document their phone calls. Individual doctors’ offices could also take the initiative to call their established patients and then document them in the central registry. After all, the ideal advance directive conversation always takes place with a doctor you already know and trust. But because we know that the ideal will not be possible for everyone, we can instead aim to have the largest and fastest impact on the population.

Even in this current context of great uncertainty, an advance directive gives us time to examine our options in depth before emergency and fear of serious illness take precedence over our ability to think clearly about our values, our goals and plans for the future – both life and death. It is important to stress that everyone has the right to choose option A – if it will be accessible to everyone, it is different. But if we all take time to think, talk and ask questions, I suspect many of us will choose something else.

Imagine if all the patients in the country who fell ill with COVID-19 started to go to the emergency room with their advance directive in hand. This large-scale effort could significantly reduce the burden of this disease on hospitals in our country, especially intensive care units. This would help sort patients in the emergency room and direct ongoing bed assignments at the hospital. Patients who want and need immediate ventilation can be transferred to intensive care (option A). Those who only want comfort care (option C), or those who have been in intensive care and are clearly not improving (option B), could be transferred to standard hospital beds, or even to a non-hospital setting (perhaps even for their homes) for palliative care.

You may not think the COVID crisis will affect you or your family, and depending on where you live and how lucky you are (not just cautious, but lucky), you may be right. But these questions will not go away. Talk to any healthcare worker who has spent time in an intensive care unit, and most will tell you how important it is to have an advance directive, whether it’s for the current crisis or a another cause of future death, but inevitable.

The bottom line is this: doctors will have to make these difficult decisions. But we would much rather do it with the help of our patients – now more than ever – to make sure everyone gets the care they not only need, but want.



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