Mar 282020
 

Joanne Lynn, MD, MA, MS

March 28, 2020

Note: this post is aimed to help people leading or working in nursing homes, and regional planners. If you are someone who is worried about your relative in a nursing home, you may find this a bit overwhelming, and you’d certainly need to do some translation. Also, this is the informed opinion of one geriatric and palliative care physician. Undoubtedly, this can be improved. If you see an improvement, please let us know at [email protected] As with all of our materials, this is published with a Creative Commons Attribution-NonCommercial 4.0 license. In short, feel free to re-use this in any way you like, just give us an attribution and say whether you modified it. We would appreciate your letting us know how you use it.

Nursing homes are being held to an impossible standard – as if they could prevent outbreaks in these settings. CMS cited the nursing home in Kirkland for three “immediate jeopardy” deficiencies and threatened them with closure, and one of the deficiencies was failure to have a back-up physician! How many nursing homes are going to have a reliable back-up physician in a pandemic?!

Below is the outline I’ve put together to help guide the thinking of staff and leadership in nursing homes. The fundamental claim, beyond all the details below, is that the country desperately needs nursing homes to step up and provide care for a LOT of people who will die in this pandemic.

Nursing homes have no way to avoid outbreaks – they can reduce the risk and increase the likelihood of delay, but it still is a roulette. Unless we get an effective vaccine or treatment, eventually almost every facility will have their crisis. More than 20% of their residents will die and another 20% or more will be much less functional for having been so sick. During the peak of the pandemic, many will be unable to be transferred to hospitals. This is not the result of inattention in the nursing homes – it’s the combination of the behavior of this virus and congregate living of very disabled elders.

Hospitals and planners need to value these facilities and include them in the decision-making. The solution is not generally to send out surveyors to enforce infection control; it is to get masks and other PPE – and morphine – to nursing homes. It’s to encourage calls for help, rather than issuing penalties for situations that are built into the way we’ve structured nursing home care. Similar issues affect assisted living, home care, and hospice.

I know this is tough stuff. I know it is hard to say, and harder to implement. But it is the nursing homes, home care, hospices, and assisted living that shortly will become the sites of a great deal of serious illness and death, as the hospitals fill up and overflow. Others in the health care system and the government would do well to help nursing homes to do their generally quite unfamiliar job, since they won’t have the option to opt out.

1. There will be serious outbreaks in (many, perhaps most) nursing homes

  1. The virus has a 5-day average incubation period and is infectious during that time – before any symptoms
  2. Many people (especially younger people) have no symptoms at all – and still are infectious
  3. Nursing homes cannot always completely isolate residents, at least not for months
  4. Nursing home staff must each provide care for multiple residents
  5. Nursing home staff are not being given protective equipment for each contact with a resident (or for any!) – and some residents can’t tolerate protective equipment on themselves or their caregivers
  6. The swab test has a substantial false negative rate – 37% in the one reported study – so a negative test might be misleading
  7. The case fatality rate in nursing homes is upwards of 20%, and those who survive a serious case will often be more impaired afterwards

2. Since all nursing home residents are at substantial risk, we should know what they would want to happen if they got a bad case

  1. A bad case gets very bad over a few hours or a couple of days – not much time to make decisions
  2. Many of our residents (or their surrogate decision-makers, usually family) would look at their odds of surviving hospitalization and ventilator support and realize that this would be an undesirable way to come to the end of life and would prefer to stay on-site, where things are familiar – and to have hospice-type care. Some might even be aware of the limitations of hospital beds and ventilators and altruistically want to leave those resources to younger people.
  3. But nursing home staff can’t count on being able to lay this out when the person is becoming very sick, and staff might not be able to find their surrogate decision-makers quickly – so nursing homes need to get decisions made in advance and know which residents would not want a transfer.
  4. This requires that we carry out a substantial number of sensitive discussions quickly – this week, or as soon as possible. Initial experience shows that capable residents and the surrogates of cognitively disabled residents are remarkably open to this discussion at this time – they have usually been thinking about it.
  5. And our hospitals may well become so overwhelmed that they cannot accept transfers, in which case the nursing home is going to have to do the best it can to support the person’s life and to ease their suffering.

3. How to discuss resident-centered preferences in advance of illness, in the context of Covid-19

  1. Emphasize that you (the person seeking to clarify preferences) are trying to be sure that everything is done in the way that the resident wants (or would want, if talking to a surrogate)
  2. Check on what the resident (or surrogate) already knows about the situation and how it applies to them
  3. Offer to fill in gaps in knowledge
  4. Ask if the person already has a decision in mind – and if so, assess whether it is reasonably well-informed and get that documented
  5. If the person is conflicted, ask them to tell you more about what considerations are in their mind and document those, and come back a day or two later and ask if they have given it more thought and offer to hear what they are considering.
  6. This conversation may be done with a religious counselor or a social worker – and it can be done over the telephone or over an audio-video connection like Skype or Zoom (now that using these platforms does not violate HIPAA requirements)
  7. There are some good suggestions on how to phrase your conversation at:

4. Treatment of a very seriously ill person with respiratory failure

  1. Obviously, a very sick person with respiratory failure will need oxygen, so each nursing home needs to have enough ways to get oxygen to our residents. Nursing homes may need to try to stock up on oxygen concentrators, tanks, tubing, and masks.
  2. Air hunger is the most severe symptom these residents are likely to have, and the treatment for that is morphine (or equivalent of another opioid medication).
  3. For most people, there is a dose of morphine that allows the patient to relax and still to have enough oxygenation to survive and maybe to recover. Sometimes the pneumonia is so severe that the only way to stop overwhelming suffering is to be deeply sedated, and nearly all patients in that situation will die. The severe suffering of the feeling of suffocation justifies relieving the air hunger with morphine even in these situations.
  4. Morphine can be given in a number of ways – under the tongue, in a suppository, under the skin, as a pill, or as an intravenous drip. The method used will depend upon supplies and the clinical situation.
  5. In most situations, the dose needed will be found by titrating repeated small doses until the patient is reasonably comfortable and then continuing that dose until the patient is better, symptoms worsen, or the patient dies. Testing for improvement may require backing off on the dose for an appropriate interval.
  6. Handling opioid drugs will require the usual cross-checks to prevent diversion.
  7. If it is permitted, it might be wise to be sure that the nursing home has some supplies on hand, or that the pharmacy is keeping a substantial supply on hand.
  8. Many nursing homes will benefit from having the backing of the local hospice or hospices, whose physicians and nurses will usually have more experience. Some might set up a consulting line to check on next steps. Some might set up rapid enrollment into a formal hospice program. In general, nursing homes would do well to consult with their hospice(s) in advance of any outbreak and settle on a plan.
  9. Under the law, opioids left at the time of a patient’s death must be wasted and documented as wasted. In the context of this pandemic, the nursing home may want to delay any wasting of such a valuable resource and instead provide for locking up any remaining supplies or asking their physician or hospice to manage this off-site. There are efforts being made to regularize this practice during the pandemic.

5. Removal of the bodies of residents who have died

  1. The nursing home would do well to talk with the major funeral homes and crematoria in the area to be sure that they are staffing up and stocking up, and that they understand the urgency of removing the body promptly
  2. The usual requirements for notifying the coroner, getting death certificates signed, and managing the grieving family may need to be reconsidered during this epidemic. The nursing home will need to stay abreast of any changes and to reconsider their own practices

6. Serologic tests for immunity

  1. Within a few weeks, tests for immunity to Covid-19 virus should begin to become available.
  2. IF a person is immune and if the person is not still shedding the virus (takes about 2 weeks after onset of the disease, but can go longer, up to a month) as documented by a diagnostic test – that person is no longer a target of the virus nor a person who can spread the disease (with ordinary good hygiene)
  3. If a nursing home can get those tests for its staff, you can tell which of the staff are already immune, and those staff can probably work with Covid-19 patients without risk to themselves.
  4. Likewise, the nursing home could tell what family members can visit and what current and future residents are safe from this virus.
  5. Guidance on this testing is likely to appear within a few weeks.

7. Engagement in the regional planning process

  1. Nursing homes must be “at the table” when disaster planning is underway. A region may need to designate some facilities for all Covid-19 residents, perhaps because they had an outbreak and now have mostly immune staff and residents. Some regions may call on nursing homes to take in sick and disabled elders from the community, beyond their typical bed capacity, in order to help elders who are sick and live alone or who have lost their caregiver.
  2. In order to be “at the table,” nursing home organizations or ad hoc coalitions might support one or two representatives who are knowledgeable and able to communicate to all affected facilities.
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Mar 242020
 
Dr. Joanne Lynn Portrait. Photo credit Politico (used with permission)
Dr. Joanne Lynn

By Joanne Lynn

Within the next few weeks, the U.S. will experience a very large number of deaths from Covid-19. The evidence is now plain that these will mostly be persons over 60 years old, and many will be persons past 80 and persons already living with disabilities and illnesses associated with aging. Every one of us in that group should be making decisions about the desirability of hospitalization and ventilator support, yet no one is talking about making Covid-19 advance care plans. If a person chooses to turn down the hospital setting or the ICU care, whether for spiritual, pragmatic, or altruistic reasons, that person needs to be confident that symptom management for air hunger will be available. And our funeral homes, crematoria, and cemeteries need to be ready. Furthermore, separate from all those issues, the nation needs to be developing serologic testing for immunity, so we can tell who is immune and therefore able to return to work and visiting without the risk of infection from or spread of this virus.

Why are we not thinking ahead and preparing for these issues? This is the same problem we had in January, when it was already clear that this virus was so contagious that it would circle the globe. We are already way behind in dealing with today’s issues. Rather than being in the same position on near-future issues, we could deliberately get out ahead on these.

Every nursing home and assisted living facility should immediately move to get advance care plans for nearly all of their residents. These plans should be specific to the threat of Covid-19 in the context of the particular resident’s situation. Covid-19 in elderly and seriously ill persons mostly kills by respiratory failure, progressing over a few hours or days from a sensation of breathlessness to air hunger and suffocation. Only a minority of elderly persons who are put on ventilators survive to leave the hospital, and most have lost more functional ability from the deconditioning and struggle. Elders already living with eventually fatal illnesses and their families might make decisions to avoid all this and accept that a serious case of Covid-19 is very likely the end of their lives.

But someone has to ask them. Someone has to inform the elderly person or his or her surrogate decisionmakers and help them to understand their situation, and then to document their decisions, especially if they decide to go against the conventional pattern of going to the hospital or using a ventilator. These discussions are difficult, and the clinicians involved may find VitalTalk.com to be helpful. Families might resort to TheConversationProject.org to find the language needed. Leaders on television need to be encouraging these discussions and decisions.

Nursing home and assisted living residents are at particular risk because we really have no way to prevent outbreaks in facilities. This virus has about a 6-day incubation period in which the infected person has no symptoms but is already capable of spreading the virus. Someone is bound to bring the virus into some facilities unknowingly. With so many residents who cannot cooperate fully with isolation due to dementia or delirium, the virus is very likely to spread. So, a focus on advance care planning for residents of nursing homes and assisted living centers is urgent and is also able to be implemented. Still, half of our population of seriously ill or disabled elderly people are not in facilities; they are being cared for at home by family. So, families need to have the same conversations and make these decisions.

One painful aspect of these discussions is that hospitalization and ventilator use may become unavailable to these elderly or ill persons if our facilities become overwhelmed. We don’t need to dwell on this aspect, of course, but we do need to acknowledge that a decision to pursue fully aggressive medical treatment depends upon those elements continuing to be available.

In addition, a person whose care plan is to stay on site and not to use the hospital, or who has no option to get hospitalization, needs to be able to rely upon good symptom management for respiratory distress. This requires supplementing oxygen and providing morphine (or another opioid). Many nursing homes and assisted living centers will have had little experience with supporting people dying with respiratory failure as the cause. Hospice and palliative care practitioners will have the needed experience of titrating medication to relieve air hunger while leaving the possibilities open that the person might survive, but they need morphine and personal protective equipment. Even so, they will be stretched to serve suddenly large numbers of infectious people dying of respiratory failure at home and in facilities. These clinicians need to be in the list of high priority providers and their services need to be acknowledged and valued by leadership.

Morticians, funeral directors, crematoria, and cemeteries will need to be prepared for a surge of deaths, including many out of the hospital. Again, leaders should acknowledge and value these services and help to make arrangements for their workforce and supplies.

Finally, we will soon have a substantial number of people who have had their Covid-19 infection and recovered. Nearly all will have rid themselves of the virus within a month. But most will be uncertain as to whether they are immune because they never had a definitive diagnostic test, either because their illness was mild or because the testing was unavailable. Persons who are immune become very valuable to the public. They can return to work, they can visit sick people, they can provide care – indeed, they can be the vanguard of a return toward normal. But they need to know that they are immune, as do their employers, patients, and family members. This calls for development of and deployment of serologic testing, so we can know who is still susceptible and who is immune. We don’t yet know how long immunity will last, and the evidence in related viruses is for it waning over a year or two. But in the current year, these people are especially valuable since they cannot be infected and cannot spread the virus (with ordinary hygiene). We need leaders to be calling for development of this testing and making plans for deploying it – perhaps first to health care workers.

The nation is watching the experience in Italy with some horror – but it is over there and not here. We are not actually dealing with the likelihood that some aspects of their experience will be here, in at least some parts of the nation, in the next months. Let’s get over our reticence. We will have a great many deaths. Many will be in nursing homes and assisted living centers and most will be among people who are growing old. When a person is likely to die if he or she gets this disease, we should at least be clear as to what treatment the person wants. If the person is dying without ventilator support, he or she should have treatment to prevent feeling suffocation. Bodies should be able to be removed and buried or cremated promptly. And we should be ready to test for immunity within the next month.

These things are foreseeable. It’s time for leaders to talk and to put plans in place. Let’s get ahead of this pandemic on these issues.

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