Advanced directives and COVID: An interview with geriatrician Leslie Kernisan

To inform the conversation, I reached out to Leslie Kernisan, MD, MPH, a San Francisco geriatrician and the founder of the popular geriatrics advice website BetterHealthWhileAging.net.

First, there will always be risk. The question is how we minimize it. We’ve also learned that many people who are older with COVID have mild illness and will recover. That said, a significant minority of older adults become dangerously ill and mortality rates are highest in frail elders, so this is still a condition that we have to take very seriously.

Now that hospitals are not under surge, we don’t have the issue that used to be a concern, which is whether there would be enough ventilators. But we’re still trying to learn what helps frail older people survive COVID, when they get sick enough to have low oxygen levels and otherwise be in danger. We’re still trying to understand how well proning (or re-positioning) helps with breathing when people are frail elders. We don’t have good statistics yet. Certainly, when people are older and frailer, if they are sick enough to be hospitalized, they have a 50% less chance of surviving. It’s probably less than 25%.

What do we know about ventilator use for COVID?

For people of all ages with COVID, they have to be on them for longer than we’d expect for other forms of critical illness, like a few weeks. The big problem is that everybody loses muscle strength and function when they’re immobilized in bed. For you or I, it would be a long recovery if we survived two weeks on a ventilator. But for the older and frailer, the recovery would be much slower and harder. (See today's Washington Post article, "Covid-19 patients who survive the ICU have a long road home.")

What does being put on a ventilator look like?

It is usually indicated when people are quite sick, short of breath or possibly becoming unresponsive. The medical team administers sedatives and muscle relaxants and then puts a tube (about the size of an adult’s index finger) down your throat. They then have to continue sedating you so you don’t pull the tube or IV lines out. Then you have to remain hospitalized in an intensive care unit, where they can continue to monitor you carefully. Because patients are usually sedated and immobilized, part of the monitoring involves repositioning the patient to prevent bedsores. If sedation is reduced, patients often show signs of discomfort and distress. Research done before COVID suggests that when patients are more conscious during their ventilator treatment, they often experience fear, anxiety, loneliness, and discomfort. Now that COVID means that medical staff wear protective equipment and family can’t be present, the experience must be even harder on patients.

How might having dementia contribute to the experience?

It’s important to know with dementia that hospital stays in general are harder, because the patient is more confused, more distressed and more likely to develop delirium from the stress of the illness and hospitalization, especially since family cannot be with them. It’s also important to consider that not only are they likely to have a longer, more demanding physical recovery after being taken off a ventilator if they survive, but also a long, slow cognitive recovery, too. For those sick enough to require ventilation, I would guess that most are unlikely to return to their pre-ventilator physical or cognitive baseline, even if they are fortunate enough to survive the COVID illness itself.

How can mom be kept comfortable at home with COVID?

Just because someone has decided they don’t want to attempt ventilator treatment or even hospitalization doesn’t mean no medical care. I would encourage people to talk to their health care provider and ask what kind of options would be available to them at home, to manage symptoms and potentially even manage a transition to comfort care if the symptoms get really severe. Are they in an area where they could get home hospice fairly quickly? Home hospice can provide not only medication to help with symptom management, but maybe more importantly, the guidance and support of a clinician for the family. The mainstay medications to relieve breathlessness and difficult symptoms are morphine and the related opiates. Medications for anxiety are also sometimes used. For a lay person, knowing how to give the medications can be tough; that’s why hospice teams usually provide guidance to families. In some areas, palliative care clinicians are sometimes available to provide remote guidance to patients and families, even if the sick person isn’t actually enrolled in hospice. (A great resource for families is https://getpalliativecare.org/)

Advanced Directives and the MOST form

Having a MOST form (short for “Medical Orders for Specific Treatment”) or POLST (“Physician Orders for Life-Sustaining Treatment”) form is generally recommended for people who have a limited life expectancy. Unlike a traditional advance directive, a MOST form can be completed by a health care proxy. It’s not unreasonable for people with dementia to have one in place, too. It’s a single page form that indicates what intensity of treatment one desires, in a format intended to provide specific and practical guidance to other health providers during an emergency or serious health crisis. The first part usually specifies whether to attempt CPR versus “Allow Natural Death”. And then for someone who is breathing but is ill, there are three broad categories, from do it all to comfort care only. Frail older adults and their families often choose the middle route, which is selective intervention and often is framed as “hospitalization is ok, generally avoid intensive care, focus on treating conditions that the person is likely to recover from.” With COVID going around, it’s true that this could create a life-threatening health emergency for many. So I do recommend that frail older adults – or their healthcare decision makers – consider a MOST form. If a family concludes that being on a ventilator for COVID is not in line with what their older loved one would want, a MOST form can help convey that to health providers. Otherwise, the default in US healthcare is to do everything, and I don’t recommend frail older adults go that route unless it’s really clear that this is in line with their preferences, even if the chance of recovery is quite small.

Better Health While Aging is a health and caregiving education website created and curated by Dr. Leslie Kernisan, a practicing geriatrician with a special interest in family caregivers.