Patients with COVID-19 in the ICU often require prolonged life support — possibly including weeks on a ventilator (breathing machine). Particularly for elderly patients, this may mean difficult decision-making by the family about whether such a long and dangerous struggle is in accord with the patient’s wishes. As ICUs again fill to overflowing with the Delta-variant surge, these tough decisions are happening all the time.
But even before COVID-19, such decisions were common. With machines and medications to take over the work of the lungs, heart, and kidneys, we can now keep almost anyone technically “alive” — way past the point that makes sense in that they could return to a reasonable quality of life. No one wants that for their loved ones. So when people die in the ICU, it’s usually not because they die despite the machines and medications: sixty-five percent of the deaths that occur in the ICU happen after a decision to withdraw life support.
Far from being monstrous, these decisions by family members are frequent, necessary, and courageous. At some point, the most important question becomes not whether or when your loved one will die, but how. Nevertheless, these decisions can be agonizing to family members. Many have experienced post-traumatic distress syndrome, persisting long after their loved one’s ICU stay. Yet, the large majority of close family members say they want responsibility for these decisions — probably because they understand intuitively that they are best positioned to understand their loved one’s desires and best interests.
Here is some advice if you are helping to make these hard decisions.
1. Understand that your job is to represent the patient’s wishes — not yours
If you are the medical proxy, it can feel like a terrible responsibility to decide to withdraw life support. But you should remember that it’s not actually your job to make your own independent decision. Your job is to represent what you think your family member would want, using everything you know about him. In fact, this might be quite different from what you think is best. Making end-of-life decisions sometimes requires great selflessness.
2. Know that if you make the decision to withdraw life support, your family member can be kept comfortable
Some family members fear a decision to withdraw the ventilator and other life support in part because they’re afraid the patient will then experience suffocation or pain. But sedatives and other medications can be used to keep your family member completely comfortable during the dying process.
3. There are two quite different ways to think about end-of-life decisions
When chances of survival are small, most families will focus intensely on small hopes. This may be very appropriate, based on the patient’s circumstances and values — for example, consider a young mother with dependent children, whom you know would want to fight hard at any odds and cost.
But for some patients, it may make more sense to focus on what is most likely. Picture an elderly man who has had a rich and accomplished life. He has remarked to his wife on many occasions that although he loves his life, he feels that he has lived it fully, and is at peace with the idea of death. Imagine that his doctors estimate he has a 20 percent chance of survival with a meaningful quality of life.
The young mother might well want to take those odds, but for this gentleman it might be more important to consider the most likely scenario: what is probable is that he goes through a long, difficult hospital course, only to die, or to survive with a miserable quality of life. A family member, knowing the patient’s values, might take the “most likely scenario” approach and decide that continued aggressive care isn’t appropriate for this man.
What about your relative? Based on what you know, which approach is more appropriate? Do you think your loved one would want you to set your sights on small chances, or do you feel you can best answer your responsibility to your loved one by planning based on what’s most likely? Explicitly choosing between these two very different strategies may help to provide some clarity as you make your decision.
4. Consider the quality of life as well as the chance of survival
Most people who survive after weeks of life support in the ICU are in for a long and difficult recovery. Fewer than 1 in 6 such patients will go home from the hospital. The rest are initially discharged to some other kind of facility. Over the course of the year, they will be moved between various care locations an average of four times, and most will require at least one readmission to the hospital. Only about two-thirds will survive this first difficult year. Those who survive often experience persistent physical disabilities, along with mental health issues, loss of employment, and partial dependence on caretakers.
The good news is that in subsequent years, things start to look up. The two-thirds of ICU survivors who are strong enough to make it past the one-year hurdle tend to do pretty well in terms of getting back quality of life and independence. Almost all 3-year survivors, for example, are independent and living at home. But it’s important that you understand that your loved one isn’t out of the woods by any means after leaving the ICU, and there’s likely a long road ahead. For some patients — particularly those who hate the idea of being dependent on others — this should factor heavily in decision-making.
5. Talk with your doctor
If you are the medical proxy, you have final legal authority — but the responsibility doesn’t lie with you alone. These decisions are best made in partnership with the doctor. You need to know your doctor’s best estimate for survival and quality of life, and she needs to hear from you about your loved one’s values and beliefs about both how to live and how to die. Ask for a scheduled family conference to discuss these issues fully. Afterward, consider asking her, “What would you advise if this were your family member, knowing what we‘ve told you about him?”
Dr. Lara Goitein is a pulmonary and critical care physician, and author of the book, The ICU Guide for Families: Understanding Intensive Care and How You Can Support Your Loved One (Rowman & Littlefield, Dec. 1, 2021).