How Eternal Nursing Home Prison is Completely Antithetical to the idea of Comfort-Focused Care
Eternal COVID avoidance for nursing homes means they likely get more depressed, debilitated, and in the end live shorter lives anyways (OR - the "Story of Bob")
In my nursing home, we actually have so-called “hospice care” beds on both of our floors. These are single rooms that we reserve specifically for our very old residents whom physicians judge to be in the last 6 months of life (and therefore qualify for our services). Hospice care is extremely important, and interestingly - actually a relatively new medical specialty, having only come into being around the late 60s / early 70s (in the United Kingdom of all places).
Due to the nature of our particular facility and the mix of providers and services we offer we don’t technically offer fully by-the-book hospice care, but the basic idea is 1) the resident is actively dying and 2) the focus of care deliberately shifts away from life-saving interventions and towards promoting pain management and comfort.
The idea is - at a certain point, whether because of frailty due to age, or the particular severity or combination of disease processes (or both) - a judgement is made that the person no longer benefits from life-saving and “heroic” medical measures like CPR, artificial means of respiration (ventilators), or chemotherapy, or invasive surgery, or what have you.
Hospice and Palliative Care
For a number of family members and patients who aren’t savvy about the medical system, the utterance of the word “hospice” can be extremely scary and sound like, well giving up.
But there’s actually a pretty interesting (and large) body of literature showing that for any number of patient populations, like heart disease, cancer, etc. - when they stop the surgeries, the poking, the prodding, etc. (which can be very stressful on what are often aging bodies debilitated by years of disease) patients can often live significantly longer than those who stay on the traditional, lifesaving track.
To demystify hospice care a bit - really, it’s just a specialized version of what’s called a palliative care approach - or care that prioritizes comfort over life-saving interventions. The consensus definition from the International Association of Hospice and Palliative Care is here, but I like this one the best:
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses.
The Story of Bob receiving Palliative Care in the pre-COVID Alternate Universe:
Let’s use the example of my resident, Bob1 - he’s 85 years old, a retired metalworker and Army vet, he’s been at my nursing home for the past year and a half, and has recently transitioned from our subacute rehab unit to long-term care after having completed his third round of chemotherapy in the last 10 years for a nagging metastatic cancer that started in his bladder and has spread to his bones.
One thing is for sure - Bob and his family have decided that he’s fought very hard. His wife of the last 62 years sees that every time his cancer has recurred and he’s gone through the chemo treatments, it’s taken more and more out of him. He’s also done four separate ER visits over the last 10 years - which is always scary and exhausting. Worse, he’s done two separate stints in the ICU due to complications of treatment, which he hated - lots of machines, tubes, nurses are always busy and their faces are always changing, and the place is just not like home.
Also, Bob’s memory isn’t so good anymore. So - he’s come to my nursing home and the decision was made to put him on a palliative, comfort-based approach.
But - here’s the thing - Bob stopped his chemo treatments a little over a year ago. His wife and family agreed that if he got an infection or some sort of other issue, he would be treated in the nursing home, and not sent out to the ER.
This doesn’t mean he doesn’t get antibiotics to treat infections (which he has gotten two rounds of over the last two years for a couple of minor UTIs). It also doesn’t mean he doesn’t get treated for other illnesses if and when they come up.
Let’s be clear about something too - Bob isn’t in hospice care per se (as Bob hasn’t shown any signs at this point he’s within 6 months of dying - despite the terminal nature of his cancer), this is a palliative care approach for his his care. In other words, the family have decided that the emphasis to his care is not going through the exhausting process of aggressively treating his cancer and pursuing a life-saving, cancer-eliminating approach. Instead, the emphasis is now accepting that he has cancer, that he will at some point die from this cancer, and instead the focus now is on pain control, comfort, and most importantly - living life to it’s fullest.
What has happened since the shift in his care approach? Well - Bob has flourished. The nurses get him up five days a week (he prefers to stay in bed on the weekends). Because this is the magic land of pre-COVID times, his wife comes to visit several times a week, at various times of day. A few days out of the month she stays the whole day and accompanies him to bingo, or just sits outside with him on the upstairs patio and reads to him, or they just look at the birds together.
A couple of times over the last year his family were able to orchestrate two day-long outings to his family home an hour away, where he got to be with his two twin great-grandchildren (now two years old). When he got back to the nursing home, he was exhausted, but all smiles.
Other times, his outings are more modest. His wife takes him out to a restaurant. He doesn’t eat a lot, but he always enjoys his wife’s company. The staff at the restaurant treat him well, and he has a great time.
Other times, his wife comes to to the nursing home and lets our staff do the heavy lifting - although Bob has never been much of a movie person, we had gotten him to attend two movie outings with our Recreation Therapy staff, only because his wife wanted to go with him.
Bob still has pain from his cancer and pre-existing arthritis (which they treat aggressively with narcotics), and his weight has dropped over the past year and a half, despite the staff’s attempts at supplementation and giving him his favorite foods. But - he has lasted longer than most would have thought he could. In short - Bob is doing well, and is a palliative care success.
The Story of Bob receiving Palliative Care NOW, in the Real World of COVID Land:
The reason why I tell the story of pre-COVID Bob, as a palliative care success story in that strange, otherworldly fantasy-land that is pre-COVID world, is to emphasize how starkly, depressingly different his life is now.
Let’s get rid of the pre-COVID wayback machine and place Bob in my nursing home today. What are the realities for Bob?
Although wife can still visit, her visits are limited to two hours, given nursing requirements to “monitor” visits for public mask compliance. No more all-day visits, and the visits need to be prescheduled. She doesn’t visit as often as she would have otherwise.
Although they may be able to occasionally “sneak” a kiss or a hug away from nursing eyes (in private) - Bob and his wife are not allowed to see each others faces again in public due to “forever masking” (so called “universal masking” rules).
Bob has not seen his great-grandchildren except on a computer screen via Facetime. He has literally never met them in person.2
Bob can no longer leave for outings in the community. No movies, no restaurants. Most importantly, despite the fact he lives less than an hour away - according to the rules he is unable to ever go home again with no end in sight to this policy.
Although Bob has a very large family and they have wanted to do a couple of family barbecues for him (they wanted a big birthday bash for him, plus one for 4th of July) - since COVID these are limited to no more than 10 total. So, they haven’t bothered.
Recreation Therapy and services have a much smaller menu of offerings. No more outings, and much more limited offerings in house.
Similarly, our Voluntary Service doesn’t host visitors nearly as much as they used to. Holiday celebrations, normally a big thing here at the nursing home, are smaller and quieter, if offered at all.
In this post-COVID world for Bob, his weight has dropped much faster than it would have otherwise due to the restrictions on visitations (think - family members bringing in random snacks and goodies), restrictions on volunteers (who are also notorious for bringing in naughty goodies for our old folks), and lack of access to restaurants.
Also - and this is a big one - no more congregate dining (e.g., residents all eat in their rooms, alone). There’s a pretty longstanding literate base that shows when older adults eat together they tend to consume more.
Bob is also not getting out of bed more than once or twice a week, and only does so because the nurses “hound” him. He complains “there’s no point to getting out of bed, there’s nothing to do.”
Bob seems depressed. His pain has been poorly controlled with medications.
Bob is not thriving. In this post-COVID world, Bob lasts only about nine months at our nursing home under his palliative care approach, and due to his swift decline, he is eventually converted to a formal hospice care program as his attending physician feels he has less than six months to live. Although this liberalizes certain things about his care (his wife can now visit at all hours again, and more than two hours at a time), Bob eventually succumbs to his cancer and dies.
In Summary
I keep writing these articles because I want to emphasize how profoundly that COVID rules have changed my nursing home, for the significantly worse for my residents. I think people just assume that these rules extend life for my patients.
I don’t. I think it’s shortening many of their lives - literally killing them - and at the same time, I think it’s making whatever precious time they have left far, far less meaningful and happy. The last 2+ years have been an ongoing crime against nursing home residents, in my humble opinion, as your GeroDoc.
As always, I fictionalize and/or anonymize every patient example I use.
As of this writing - this week - things have changed. Because the FDA has recently approved (for “emergency use”) a COVID vaccine for under 5 year olds, Bob should theoretically be able to see his great-grandchildren, as they can be vaccinated for COVID now, thereby satisfying CMS rules on visitors being vaccinated or screening negative for COVID prior to visitation (although it remains to be seen, to put it mildly, as to whether an under 5 year old will wear masks or comply with social distancing rules). Mind you - even the idea of COVID being an “emergency” for under 5 year old children, as well as the data that has been gathered supposedly validating use of a vaccine for it, has been hugely controversial. I highly recommend following the work of UCSF hematologist-oncologist and Associate Professor in the Department of Epidemiology and Biostatistics Dr. Vinay Prasad, who has blogged and made numerous videos about this.