If You Needed a Ventilator, Would You Really Want One?

Q. My niece, Rebecca, was hospitalized with coronavirus last month and was placed on a ventilator. When her temperature was quite high and her oxygen levels were low and she needed life-saving measures, she didn’t have an advance medical directive in place to indicate her preferences, so they just went ahead and hooked her up to the ventilator. She is in her late 40’s and survived the illness, but is having some issues after the fact due to the ventilator.

I understand that without the ventilator, her life might not have been saved. However, from what I’ve heard, ventilators are awful and I’m considering whether I would want one, should I fall ill like her. I think I would like all other options explored first. I’ve only heard bits and pieces of her experience, because she doesn’t like to talk about it and she is certainly not herself these days. She seems weak and lethargic, and has trouble with some of the things she used to do including talking, swallowing, and preparing meals. Can this really happen as a result of a ventilator? What are some of the other possible side effects and what’s the best way to indicate to doctors and family members whether or not I would want that kind of treatment to save my life?

A. I am glad to hear that your niece pulled through. I hope her subsequent health impairments continue to get better with time.

You are not alone in your concern about what ventilators are like for those who need them while they are being treated and after the fact. Health care providers have recently expressed concern that anxious Americans and prospective patients don’t really understand what is involved with going on and then coming off a ventilator. They believe that this understanding is necessary when deciding what you would want should you become seriously ill and the device is offered. Ventilators have been helpful in saving the lives of some people with COVID-19, but are they worth the discomfort and long-term effects when they don’t always work and there may be other less extreme options?

In a recent example, Diana Aguilar, 55, spent 10 days on a ventilator fighting for her life. When her fever hit 105 degrees and she was delirious, Diana remembers having a tough time breathing. The virus had already been ravaging her body and affecting her lungs for weeks. She recalls a doctor sliding a ventilator tube into her mouth and pushing life-saving oxygen deep into her damaged lungs. What Diana was unaware of is the damage ventilators often inflict and the slim odds of survival they afford. Studies suggest more than two-thirds of patients die while on ventilators.

Aguilar, who was sure she was dying, whispered her goodbyes to her husband, son, and daughter, and then she prayed to God. As she was struggling to breathe, every inch of her body ached as she felt it failing. And then came the intubation, a last-resort intervention thousands of patients have undergone in the past few weeks. What many of these people didn’t know is that even when patients survive, as Diana did, some of them will continue to be profoundly weak due to muscle atrophy, unable to perform daily activities (such as shaving, taking a bath, or preparing a meal, for example) and will be bedridden. “Some people never fully recover,” says Michael Rodricks, medical director of an intensive-care unit in Somerset, New Jersey. “And those who do often must relearn basic skills such as walking, talking and swallowing.”

Ventilators Have Saved Lives

Ventilators, first introduced in 1928, were initially called “iron lungs” and were used to help polio patients breathe. Only recently have researchers learned that the biological responses to the breathing machines that kick in almost immediately often cause lasting harm.

Despite the harm they cause, ventilators have saved many lives, such as your niece and Diana Aguilar’s in our example, who might not have lived without the help of a ventilator. The mechanical ventilator was what kept her alive, as it had been breathing for her for 10 days as she lay in a medically induced coma. The reason ventilators work is because they help breathe for the patient when they can no longer do so on their own. The lungs typically deliver inhaled oxygen into the blood supply in seconds. If they aren’t working, the damage is swift. A person can go from healthy to dead in fewer than six minutes. A ventilator helps keep the person alive by keeping them breathing. It can be adjusted to boost oxygen, pressure, and volume, pushing the air forcefully into the lungs, making sure ideal amounts of oxygen and pressure can enrich the blood as efficiently as possible. Aguilar made it through the most harrowing phase of Covid-19 because of the help of the ventilator.

What Happens After the Ventilator Treatment is Over?

As the cases of Covid-19 increase, more and more patients are going through the same dreaded treatment as your niece and Diana in our example. The lucky ones pull through, but their journey back to health can be long and perilous.

The worst-case scenario, besides death, is a condition known as Post-ICU syndrome that can afflict as many as half of Covid-19 patients who survive on a ventilator, says Dr. Hassan Khouli, chair of Cleveland Clinic’s department of critical care medicine. “These patients become deconditioned,’’ he says. “Some behave like they are really paralyzed, as if they are quadriplegics. They can barely move their muscles.’’ The risk of dying also remains higher than average for at least a year after getting off a ventilator, a risk tied to both the number of days spent on the machine and other health conditions the patient had before falling ill.

Hospitals such as SUNY Downstate Medical Center in New York are setting up entire rehabilitation floors to help people coming off ventilators learn how to live again. Others are trying to cut back use of the device, avoiding a rush to ventilators when oxygen may be all that’s needed.

How to Decide If You Want a Ventilator

In nearly all COVID-19 cases, the choice between using a mechanical ventilator or not is the choice between life and death. So, the question becomes, knowing the process, the risk factors, your quality of life and health: If you were to fall extremely ill to COVID-19, would you want to do everything possible to stay alive if it meant going on life support including a mechanical ventilator?

At Cleveland Clinic hospitals, several COVID-19 patients have turned down ventilators once they understood that what was involved was not consistent with their wishes, as indicated in their advance health care directives, according to Dr. Khouli. Some patients prefer the option to be made comfortable for the end of life rather than fight to survive, if their chances are unlikely.

Dr. Kathryn Dreger, an internal medicine doctor in Arlington, Va., recently outlined what patients should know about ventilators in an opinion piece for The New York Times. Dreger sees her patients in all settings, including the ICU, where she recently cared for a patient who fell ill with COVID-19. “A lot of people are going to die on the vent, which is a lousy way to die,” she said in an interview. “A lot of family are going to have to say, ‘What did mom or dad, husband or wife want me to do?’ And have to make it up because they’re not able to be there by their side or not able to ask.” This is why Dreger underscores the necessity of an Advance Medical Directive, whereby a healthcare agent (someone you name to make medical decisions on your behalf when you cannot) is appointed to convey your basic wishes regarding the use of invasive life support.
Dreger suggests that people consider the following questions:

• What’s the longest you would want to be hooked up to a mechanical ventilator?
• If you required a feeding tube through a hole in your throat or stomach, would you want to continue on the ventilator?
• Are you up for a prolonged rehabilitation that may involve going to a nursing home?

“You can say, ‘I’m going all the way. I’m going to crawl over the finish line covered in blood if that’s what it takes,’” Dreger says. “But there is enough suffering going on, and we don’t need to add to it by not knowing what people wanted.”

Let Loved Ones Know Your Wishes in Advance

At the Farr Law Firm, we have updated our 4 Needs Advance Medical Directive® to address the unique issues that have arisen as a result of this COVID-19 pandemic, and that may result as a result of future pandemics. Please see our recent article on this topic for more details.

As you can see, it’s important to make decisions and have conversations with loved ones and with medical and legal professionals letting them know your personal preferences before you find yourself in a crisis situation. Any time after you’ve turned 18 is a good time to start planning, especially since the current pandemic is tragically affecting people of all ages.

For anyone who does not have their planning in place, now is an ideal time to do so for many reasons, one of which is peace of mind. The Farr Law Firm is even offering discounts to get your planning done (20% off all levels of planning for everyone until the end of May, and 50% off of incapacity planning documents for healthcare professionals and first responders until the end of May).

When you or your loved ones are ready, please call us to set up an appointment for an initial consultation. For those who feel safer in their homes, we offer phone appointments, video conference appointments, and curbside signings (but we are still open for in-person meetings and signings for those who desire it, of course with appropriate distancing and everybody wearing appropriate face coverings):

Advance Medical Directives Fairfax: 703-691-1888
Advance Medical Directives Fredericksburg: 540-479-1435
Advance Medical Directives Rockville: 301-519-8041
Advance Medical Directives DC: 202-587-2797