Living in the high-risk category in the time of COVID-19

We are all in the high-risk category for death because all living things die.  However, each of us hopes to live a long, productive (however defined), satisfying life in the meantime.  Covid-19 is causing many of us to reassess how long we may have left.

Like most members of the Final Exit Network (FEN), I am over 60.  Many, if not most of us, also have underlying health problems, which we hope to manage for many years.  Some problems now of particular concern are respiratory diseases, heart disease, and compromised immune systems.  Those who have these conditions are at high risk of death from Covid-19.  Further, this high-risk group includes virtually everyone who makes inquiries to FEN, including some who are under age 60.

The older we are, the higher the risk.  As a result, like many of you, I have been consuming as much information as possible from reliable, scientific sources.  I have been avoiding listening to advice from politicians, though I keep up with political developments in Washington and my state.  The reason I resist many politicians’ pronouncements about Covid-19 is best understood from this headline: “Texas Lt. Gov. Dan Patrick: Let’s Sacrifice Seniors For Economic Growth.”  I’m looking for best practices in dealing with this virus, not trying to kill off older adults to save the economy, which is a false choice because many younger people will die, as well.

I especially appreciate information from the Centers for Disease Control, Johns Hopkins, UCBerkeley, the New England Journal of Medicine, and other reliable sources of information.  I avoid unsourced information and that for which I cannot confirm the source.

Concerns have risen about the inadequacy of our testing ability; the need to follow physical distancing protocols (including restricting contacts with all delivery people and store employees, using your own disinfectant in stores if necessary, using a credit card to pay, and taking your own pen to sign a receipt or punch in numbers – see NYTimes); the large number of people without access to health insurance; hospitals without adequate resources, endangering not only patients, but their caregivers, the nurses and doctors, whose lives are at great risk; the need to wash hands frequently and mindfully, which goes together with not touching the nose, mouth, and eyes with unclean hands and fingers (a hard habit to break, but essential to survival); remembering that anti-bacterial products do nothing about a virus; and the need for exercise if you are staying home for long periods.

Making treatment decisions in advance

FEN Senior Guide Myriam Coppens sent along portions of comments by Dr. Joanne Lynn of Altarum about the community deaths that are coming and the preparation that needs to happen, under the title “Enabling Persons at High Risk to Make Treatment Decisions in Advance”:

Every one of us at high risk on the basis of age or illness should be setting goals and making decisions about the desirability of hospitalization and ventilator support – yet no one is talking about making and using Covid-19 advance care plans.

Every nursing home and assisted living facility should immediately help virtually all of their residents to set goals and make decisions about how they would like to be treated if they have a bad case of Covid-19. These advance care plans should be specific to the threat of Covid-19 in the context of the particular resident’s situation. Covid-19 in older adults and seriously ill persons mostly kills by respiratory failure, progressing over a few hours or days from a sensation of breathlessness to a losing struggle to breathe. Only a minority of elderly persons who are put on ventilators survive to leave the hospital, and most have become more disabled from being very sick and mostly immobile. Older adults 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 or seriously ill person or his or her surrogate decisionmakers and help them to understand their situation, and then to document their decisions. Having the opportunity to make the decisions ahead of becoming ill with Covid-19 is especially important if they decide not to take the conventional pattern of going to the hospital or refusing a ventilator.

Nursing home and assisted living residents are at particular risk because we have no way to prevent outbreaks in facilities. This virus has about a five-day incubation period (https://www.jwatch.org/na51083/2020/03/13/covid-19-incubation-period-update) during which an infected person has no symptoms but can still spread 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 and the shortages of protective equipment for infection control, 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 it is also feasible.

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, friends or neighbors. So, families or care partners need to have the same conversations and make these decisions. They need guidance and support, too. The same urgency to plan in advance applies to elders being supported in private homes. Families and other caregivers will find helpful suggestions in the resources of The Conversation Project (https://theconversationproject.org/).

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

Shortage of medical resources

Kaiser Health News reports that

More than half the counties in America have no intensive care beds, posing a particular danger for more than 7 million people who are age 60 and up ― older patients who face the highest risk of serious illness or death from the rapid spread of COVID-19.

In some communities, thousands of residents may be competing for every ICU bed that is available.  In about a dozen states, more than 75% of counties have no ICU beds.  See the full article for more details.

The Center for Public Representation reported on March 24 that a discrimination suit has been filed concerning the allocations of ventilators under rationing policies in Alabama:

The Center for Public Representation, Alabama Disabilities Advocacy Program, The Arc, Bazelon Center and Sam Bagenstos filed a complaint with the U.S. Department of Health and Human Services (HHS) Office of Civil Rights (OCR) today regarding illegal disability discrimination in treatment rationing protocols being developed in response to the COVID-19 pandemic. A similar complaint was filed in Washington state yesterday.

The complaint focuses on the Alabama Department of Public Health’s Emergency Operations Plan regarding ventilator rationing during health emergencies, which states that hospitals are not to provide ventilators to people with certain intellectual and cognitive disabilities, in violation of federal disability rights laws, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504) and Section 1557 of the Affordable Care Act (ACA).  Press release about the complaint is here.

You can find more information on the complaint filed in Washington state yesterday and treatment rationing issues during the COVID-19 pandemic here.

For more on the federal response to the COVID-19 crisis and its impact on people with disabilities, visit our webpage.

FEN has always stood for having a good life before an inevitable, peaceful death occurs.  Before that happens, we should not forget that we are all in this together, so let’s help one another whenever and however we can.