Rethinking end-of-life plans and nursing home care for ourselves and loved ones

aged-alexboyd-300x200The Covid-19 pandemic is forcing many Americans to think and act on tough issues they otherwise might wish to avoid, and they’re getting thoughtful reminders on ways they may want to proceed with advanced or end-of-life medical planning and decisions on whether to keep elderly loved ones in nursing homes and other long-term care facilities or to bring them into their residences.

These are hard topics to deal with in the best of times. But failing to do so can leave families with not only a lifetime of regrets but also possibly significant financial consequences. Americans long have insisted that they want to have maximum control over medical decisions that affect their care.

So, thinking ahead about our own advanced medical plans, and revisiting the institutional care of beloved seniors may not only be appropriate, but necessary as the world struggles with the Covid-19 pandemic and medical caregivers are overwhelmed and may be stretched to their limits.

As the independent, nonprofit Kaiser Health News service reported:

“In the weeks since the coronavirus has surged … interest in advance care planning has surged, too. More than 4,000 requests poured in during the week of March 15 for copies of “Five Wishes,” an advance directive planning tool created by the Tallahassee, Fla., nonprofit agency Aging with Dignity. That’s about a tenfold increase in normal volume, said Paul Malley, the group’s president. ‘We started hearing from families that they want to be prepared.’ said Malley, noting that more than 35 million copies of the living will were already in circulation. Stephanie Anderson, executive director of Respecting Choices, a Wisconsin-based group that provides evidence-based tools for advance care planning, said her organization put together a free COVID-19 toolkit after seeing a spike in demand’ …The tools and documents aim to help adults of all ages plan for their medical, personal, emotional, and spiritual care at the end of life with a series of thoughtful questions and guides.”

Experts have urged patients for some time now to make advance medical planning a key part of the preparations for their loved ones’ sake, talking with them, their doctor, and lawyer about the advance medical care directive, a form that you can get from groups like the AARP (the documents vary, state by state). Be sure that everyone who might need to see the document in stressful, potentially emergency situations knows where it’s at, including, possibly as an attachment to your electronic health records.

End-of-life planning may seem cold and callous, but it’s just the opposite. It lets individuals protect themselves and their loved ones from invasive, costly care that not only may be painful but unnecessary and unhelpful. It’s a common talking point — one in dispute — but the burden of medical services for patients in the last year of the life adds up to billions of dollars in the American health care system. We need to be humane and judicious in about procedures that save lives and sustain them for painfully short periods and to no avail.

The coronavirus care also may cause individuals to reconsider existing advance directives, KHN reported, quoting experts lie Dr. Matthew Wynia, a University of Colorado bioethicist and infectious disease doctor:

“Even if you’ve made advance care plans in the past, [experts have] emphasized the need to reevaluate them in light of … COVID-19 … If you’ve documented your wishes to decline CPR or intubation because of a primary disease, such as cancer, consider whether you still want to forgo such treatment for the novel virus. Similarly, if you’ve opted for full treatment — prolonging life by all measures — make sure you’ve considered the potentially devastating aftermath of mechanical ventilation for COVID-19. ‘For this condition, people who need to be on a vent for COVID-19 are staying on it for two weeks or three, and they may have very severe lung disease afterward,’ Wynia said.”

Recent studies on assisted-breathing procedures — research conducted long before the current pandemic — offered stark information about them. A clear-eyed and hard-nosed study, for example, dispelled myths about possible life-sustaining “miracles” of artificial breathing machines. A research team with experts from Boston, San Francisco, and Dallas studied 35,000 cases in which adults older than 65 had undergone intubation and use of mechanical ventilators at 262 hospitals nationwide between 2008 and 2015. They found that a third of patients intubated died in the hospital. The New York Times reported this, too, based on the study:

“Only a quarter of intubated patients go home from the hospital. Most survivors, 63%, go elsewhere, presumably to nursing facilities. The study doesn’t address whether they face short rehab stays or become permanent residents. But it does document the crucial role that age plays. After intubation, 31% of patients ages 65 to 74 survive the hospitalization and return home. But for 80- to 84-year-olds, that figure drops to 19%; for those over age 90, it slides to 14%. At the same time, the mortality rate climbs sharply, to 50% in the eldest cohort from 29% in the youngest.”

Experts, obviously, are racing to treat severe Covid-19 infections with mechanical assistance. They’re struggling to find needed equipment, drugs, and expertise to provide this care. And data about its outcomes is being developed now, though early indicators are sobering.

By the way, patients and families also need to think carefully about resuscitation orders and the optimism that may underlie them. For the elderly, and especially for those who already are sick and frail, the most common procedure of CPR (cardiopulmonary resuscitation) can have poor outcomes. If patients are revived and sustain for some time, they often may experience pain: CPR may not seem invasive, but it often breaks ribs and can leave bruised patients in discomfort (rib injuries are among the most challenging, because they can affect all manner of everyday activities, including breathing, coughing, laughing, and eating). If elderly patients respond to CPR, they often then may need intubation and more.

The pandemic’s terrible and increasing toll on the aged, especially among those in institutional care, is causing such huge worry that some families may be considering whether to pull loved ones out of nursing homes and other similar facilities in favor of hunkering down with them in their residences.

The concern is real, with the pandemic exploding in places like Washington state from a big nursing home, and with worrisome, similar, facility-based outbreaks increasing nationwide.

The experts at the independent, nonpartisan RAND Corporation put up a research-based post for families reconsidering a senior’s institutional care, reporting:

“More than 1.7 million people live in long-term care in the United States, including in nursing homes and assisted living facilities where older adults get the benefits of group living, like social interaction, and health care services. These were the reasons many of our parents and family members have moved to these facilities. But what about now? There are no easy answers that apply to all situations, and for most people in these facilities, the answer is to stay put. But there are some who may benefit from temporarily moving out and into their family’s home or another non-institutional setting. The answer depends on individual goals and preferences. In the case of an imminent hurricane or fires, residents in long-term care depend on staff for information and protection: Is the hurricane tracking near us? Is the generator in working order? But COVID-19 isn’t like any other natural disaster. The pandemic is too new and we’re all learning new things about it every day.”

The researchers suggested key matters that individuals consider, not the least of which is whether the elderly loved one would get better, more appropriate care — with risk — in a nursing home or at home? Does your home have the right bed, a nearby bathroom, safe and quiet quarters, and more? If you pull your mom or auntie or cousin from a facility, will they be readmitted — or do they go back to the end of what can be painfully long waiting lists? Further, how will others in the household be affected by having a senior suddenly in residence?

RAND experts also offer key questions that families may want to ask of facilities, including getting information on their infection control efforts, as well as how institutions are allowing visitation and dealing with seniors’ mental health as they physically distance their residents.

In my practice, I see not only the harms that patients suffer while seeking medical services, but also the damage that can be inflicted on them and their loved ones by nursing home neglect and abuse. To be sure, we all should offer thanks and cheers for the hard working, diligent, dedicated, and too-often poorly paid people who care for the aged and who already faced problems with under-staffing and poor resourcing in nursing homes and other long-term care facilities. When this pandemic finally wanes and greater normalcy reigns again, politicians and regulators need to take a hard, deep look at how the aged get cared for — often at nosebleed prices but with skimpy front-line delivery of services. Our nation is graying rapidly, with our aging population already needing major services and that demand only sure to spike. And besides greater institutional oversight in days ahead, we need to be sure our personal medical care wishes are made known and followed through as best as dire circumstances allow. We need not only to get through these difficult times but to learn from them.

Photo credit: Grandfather in Arkansas, Alex Boyd, Unsplash
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