Joanne Lynn is a nationally recognized expert on issues related to palliative and end-of-life care. A geriatrician and hospice physician, she is the author of hundreds of journal articles and many books on issues concerning long-term services and supports. Very recently, she has written articles offering detailed advice for nursing homes dealing with the coronavirus pandemic and an overview of policy priorities for upcoming COVID-19 related deaths out of hospitals.
Gerontology Institute Director Len Fishman spoke with Lynn on April 3 about the daunting health challenges facing nursing homes and the best ways facilities can respond to them. The following transcript has been edited for length and clarity.
Joanne Lynn: The people who live in nursing homes and other residential facilities tend to be not only in the age group that has high risk but also to have multiple complicating conditions that make it very difficult to survive a serious bout of COVID-19. Still, many people get a mild case and sail through or have very mild flu symptoms and feel sick for a few days but do okay. But a substantial proportion will have a serious illness. And it looks like something on the order of around 20 percent will die from COVID-19 in these conditions.
LF: How do you come to the 20 percent estimate?
JL: The reported rates of death among those over 80 years old with COVID-19 are in the 12-18 percent range. When dealing with persons mostly in that age range but also with disabilities and illnesses sufficient to be in a nursing home, one would expect a higher rate. The reported rate in the Kirkland (Wash.) nursing home was nearly 40 percent. That was before they did full testing of all residents, so that percentage was probably high because the denominator was low. I’ve settled on expecting 20 percent unless we get an effective vaccine or treatment. I’m open to changes as data accumulates.
LF: Some of the conditions at nursing homes and other facilities caring for older, frailer residents make it especially difficult to contain outbreaks.
JL: Yes, many nursing homes only have two-bed or four-bed rooms. The separation between residents maybe a curtain. Very few have any way to lock a door. Confused, cognitively impaired residents will just walk out if they’re still ambulatory. Many can’t cooperate with keeping the mask on or can’t handle having their caregivers have a mask and shield and looking like a spaceman.
Aides generally have to take care of a substantial number of residents and they live at home. They’ve got children who may be communicating this virus to them and lots of aides will be asymptomatic for the first five or six days, so you can’t tell who is a carrier. This makes for a perfect situation (for transmission) especially since nursing homes have not been able to get the full personal protective equipment we see in intensive care units. It’s just a setup for guaranteeing there will be outbreaks in most nursing homes.
LF: Have you been surprised by the public response to instances of coronavirus-related deaths at nursing homes across the country?
JL: We haven’t really been willing to deal with a substantial scale of death except at the hospital. Our leadership still deals with outbreaks in nursing homes as if it’s somehow the nursing home’s fault. You couldn’t possibly keep this out of a nursing home with present equipment, funding, staffing and the congregate living in a nursing home. You can delay it and slow the spread. But I would suspect virtually all nursing homes will end up with an outbreak before this is over unless we get some very effective vaccine or treatment.
LF: So what steps should nursing homes be taking now?
JL: Try to make sure every single resident has a plan. Many people living in nursing homes would not want to spend their last few days in the intensive care unit. We need to be talking with residents who are still competent to make their decisions and the families or guardians of those who are not. We have a clear and present danger.
LF: Many administrators might fear that doing what you suggest could lead residents and families to conclude that homes are giving up or could even cause panic. What kind of support do they need to be more comfortable with the approach you’re advocating?
JL: Two things. National leadership needs to be talking in public about how important it is that we know what people at high risk really want to have happen. That would create a climate in which people expect their facility to be in touch. The other thing is to always start off with an affirmation that you really want to try to do what this person or this family feels is best. This is an effort to very much stay as person-centered as possible in the circumstances. Everybody’s talking about triage. This is not first about triage, this is first about understanding what you most want. We are going to try to do what you most want.
LF: You have a lot of experience in palliative and hospice care. How do older people and their families respond?
JL: In talking with practicing physicians doing this right now, we’re finding remarkable openness. People have been thinking about this as they have seen events unfold on television. The conversations are going much more quickly and to a more decisive end than when they were more theoretical. People are grateful that someone’s doing this, planning ahead. Someone wants to know what the resident and the family think is best for them. And especially for those who don’t want to go to the hospital or be put on a ventilator, they need to get that written down. And then the facility needs to be in a position to handle it.
LF: What’s the best way to document the preferences of residents or their surrogates?
JL: The POLST-MOLST (Provider Orders for Life-Sustaining Treatment or Medical Orders for Life-Sustaining Treatment) forms that most states acknowledge and that EMS is familiar with.
LF: For residents who choose to stay in the nursing home or are unable to get admitted to a hospital, what can the nursing home staff do to treat residents in respiratory distress?
JL: They obviously need oxygen and enough oxygen concentrators. You need to be able to give them opioids. If the person gets into trouble, you can’t wait 24 hours for the pharmacy to deliver it. So nurses need to have some stock on hand or a good relationship with a local hospice that will help. Obviously, hospice could take on the patient if they are not overwhelmed with homecare patients. But at the very least, hospice could help supply medications and consult on doses. For many homes, managing respiratory death will be a very unusual procedure and they will be nervous about whether they’re doing the right thing. Hospice programs may need to consult with their nursing homes just to provide handholding and reassure them they’re doing the right thing.
LF: One of the most anguishing aspects of the current situation is that nursing home residents are separated from the people they love and vice versa. What advice do you have for them?
JL: I’ve been very impressed with the creative ways that nursing home staff and families have found to stay in touch with FaceTime, communicating through smartphones and waving through the window. For the longer-term solution, we need to have serology tests to know who has already had the disease and is immune at least for a while. Once we know the immune status of people, we can make much more intelligent decisions, rather than just complete isolation.