by Katy Butler
Frail people in coordinated health systems tend to do better than those outside them. When an array of individual specialists try to fix the multiple problems of frailty, they often fail to notice the overarching concerns of many families and patients. Most frail people want to reduce burdens on their caregivers. They need practical support, like daycare programs, housekeeping, or Meals on Wheels, and they fear having to move into a nursing home. Doctors’ appointments and unnecessary trips to the emergency room exhaust them.
But people rarely talk to their doctors about these concerns. Somehow they don’t seem “medical” enough. Within the hypnotic purview of the doctor’s office there’s often an assumption that improving scores on tests and postponing death is everyone’s number one goal. But it may be more realistic—and important—to enjoy the moment, to love and be loved, to accept help, and to plan for a good death, even though it may be a year or two away. Unless you discuss your concerns openly, you and your doctor may not be on the same page. So speak up. Continue to bring up what matters most to you (or to the person you care for) even if it’s mundane and modest, like continuing to live at home, to walk, to play music, or to enjoy your grandchildren.
AVOIDING THE HOSPITAL
In an all-too-common scenario, a frail person faints, falls, or has a minor medical problem that in an earlier era would have simply been called a “spell” and overlooked or handled by a family doctor who came to the house. Today, that overly busy and underpaid medical point person, now known bureaucratically as your “primary care provider,” may not even squeeze in a same-day appointment or have a nurse return your phone call. In assisted living residences without house call services, state regulations usually require immediate medical attention after any “medical event.” This often means a call to 911 after even a minor fall.
The only recourse, especially after hours or on weekends, is likely to be the emergency room, where the frail elderly often sit for hours while doctors attend first to those with life-threatening infections, heart attacks, and injuries. In the cruel slang of the hospital, frustrated doctors in training may covertly refer to them as “frequent flyers.” After numerous tests, the frail elder goes home, often with the original problem unresolved, or is admitted for a brief hospital stay, followed by three weeks in an unfamiliar nursing home. For the still vigorous, a nursing home stay for physical rehabilitation can restore function. But for the severely frail, especially the demented, the stress and disorientation often results in a major step down in functioning. This cycle repeats over and over, exhausting caregivers, medical and institutional staff, and patients alike. Dr. Eileen Callahan of Mount Sinai hospital in Manhattan says, “What we try to do as geriatricians is keep patients out of the hospital at all costs. It’s often a life-changing event.”
Frail people should go to the emergency room only for things the ER handles well: intractable pain requiring intravenous painkillers; a broken bone or a wound that requires stitches; uncontrolled bleeding; a fever of over 104; a rampant infection requiring intravenous antibiotics; or symptoms of a stroke that requires immediate treatment with clot-busting medication. If someone is already too weak to withstand surgery, there’s no need to put them through stressful diagnostic tests like CAT scans that won’t change the course of treatment.
If a frail person has a minor fall and can’t be gotten up, consider skipping 911 and instead calling the business line of the local fire department and asking for their “Lift and Assist” service. Be clear that this is a “nonemergency lift” (use exactly that language) and say that you just want two burly firefighters, not paramedics, to show up at the house and help the frail person up. Another option, albeit riskier, is to call 911 and again emphasize that this is a “nonemergency lift.” Once paramedics arrive in their ambulance, however, they may try quite forcefully to persuade the elder to go to the hospital.
* * *
Don’t feel you must go. Fainting and falling by themselves are not emergencies: they’re often a fact of life at this health stage. A fall can result from getting up from a chair too fast, eating or drinking too little, getting overheated, picking up a urinary tract infection, having a slow heartbeat, having a bad reaction to an antidepressant like Prozac, or taking too much medication to lower blood pressure or blood sugar. None of these are best treated in an emergency room. Consider drinking water, resting, and setting up an outpatient appointment at an urgent care center or with a primary care physician. (In a coordinated HMO, you may be able to call a twenty-four-hour advice nurse or go to its urgent care department.) Bring in all pill bottles, including supplements, for a medication review. You can then explore options in a calmer atmosphere.
The same cautionary principles apply to surgery. Before agreeing to any invasive procedure, I recommend you assess where you stand (or someone you’re responsible for stands) in relation to the three elements critical to a decent recovery:
• Energy. If it takes all available energy just to get through the day, little surplus will be left for healing. According to geriatrics specialist Eric Widera, MD, those who cannot walk half a mile under their own power are at high risk of returning from surgery with worsened disabilities.
• Muscle mass. Even a few days in a hospital bed leads to muscle wasting. People too weak to rise easily from a chair may never recover the ability to stand up on their own.
• Acuity. If a simple “mini mental status exam” shows mild or moderate dementia, you are at serious risk of becoming confused and having hallucinations in the hospital, a destructive condition called “hospital delirium.” Delirium was once thought to be passing, but many older people who suffer it never recover critical mental and physical function. Three-quarters end up in nursing homes, and 35 to 40 percent die within a year.
If you score badly on these red flags, but simply must go, family and friends should stand guard against disorientation, exhaustion, and medication errors. Bring hearing aids and eyeglasses, as they reduce confusion and helplessness. Ear plugs and eye masks will help you sleep, and so will asking the charge nurse or an attending physician for a medical order prohibiting anyone from awakening you at night to take vital signs. Ask friends to bring in healthy take-out food or favorite dishes from home and share a meal. Check all medications given—overdoses and mix-ups are common—and ask medical staff courteously to wash their hands before touching you, to reduce infection risk. You may feel more like yourself if you wear your own pajamas and post family photographs where you can see them. It’s best to keep hospital stays brief, and to get home as soon as possible. If you think you’d do better at home, you can leave “against medical advice” (AMA) as do about fifty thousand older people a year. Some sign hospital paperwork acknowledging the risks, and others simply get out.
FINDING ALLIES IN HOUSE CALL PROGRAMS
The dangers of hospitalization can be beautifully avoided by returning to an ancient medical practice, standard from the days of Hippocrates to mid-twentieth-century America: the physician (or nurse) house call. These programs are being revived: the gold standard here is the Veterans Administration’s well-regarded Home Based Primary Care Program (HBPC), which cares for tens of thousands of seriously ill veterans in their own homes. Currently available only to the sickest 5 percent of vets, it has the highest satisfaction rating of any VA program . . . and long waiting lists. People who get in sometimes say they feel as if they’ve won the lottery.
A nurse case manager makes sure everyone stays on the same page and nips budding health problems before they bloom into crises. Doctors and nurses make house calls, and so do social workers, occupational and physical therapists, and technicians who do X-rays on the spot and draw blood for diagnostic tests. Some Medicare Advantage programs and other all-under-one-roof health systems offer similar, but less extensive programs (like Aspire, offered in many parts of the South and Midwest). These programs are sometimes called “pre-hospice,” “serious illness management,” or “home-based palliative care,” so it helps to ask for
them under these terms.
If none is available, I recommend finding a private physician who makes house calls, or adding on a free-standing program, like the late lamented DASH (Doctors Assisting Seniors at Home), program in Santa Barbara, California, which provided nurse house calls under a physician’s direction from 2012 to 2018. It reduced emergency room visits in its members by an average of 40 percent. Retired nurse Katina Etsell, for instance, was caring for both her parents, who were in their nineties. One relied on a walker, the other on a wheelchair. Their health problems were usually too pressing to wait for days for a regular doctor’s appointment, but rarely serious enough to warrant hours in the ER.
“We’d get a doctor’s appointment for days or a week down the line, when we wanted to deal with it right then,” said Katina, who is in her sixties. “And getting them to the office required transferring them from wheelchairs and walkers into the car. I could do it, but it was just so hard for me.”
For ninety dollars a month, Katina enrolled both parents in DASH. The service was a supplement—the couple kept their personal doctors. But when they had urgent problems, especially after hours and on Saturdays, Katina called DASH. A visiting nurse would usually arrive at the house within twenty-four hours. Conferring by phone with a supervising doctor, the nurse could run blood or urine tests on the spot.
When problems couldn’t be resolved at home, the DASH nurse and her supervising doctor referred the couple to their personal physicians. When Katina’s late father developed a boil on his head caused by the potentially deadly antibiotic-resistant bacterium MRSA, for instance, the DASH nurse sent him to his doctor, who lanced the boil in an office visit and put him on a powerful antibiotic. When that drug provoked gastrointestinal bleeding, Katina called the DASH nurse, and she suggested trying Prilosec before taking him to the ER. Luckily, the bleeding responded promptly to the over-the-counter drug. In the course of four years, Katina figures, DASH saved her parents nearly a dozen visits to doctors’ offices and emergency rooms.
Each of DASH’s nurses carried a briefcase containing thirty commonly prescribed drugs. They could hand out a two-day supply and arrange for a full prescription to be called in by a DASH doctor to a local pharmacy.
DASH also saw people who lived in nursing homes and assisted living residences—a godsend for residents who’d had a minor fall and would plead not to be bundled off to the ER. It was free to people of any age on Medicaid in Santa Barbara. Single people on Medicare paid sixty dollars a month, and couples, ninety.
Even though programs like DASH save insurers hundreds of thousands of dollars by reducing ambulance rides and ER visits that can easily top $10,000 per incident, they’re poorly reimbursed by insurance, and therefore scarce. DASH, unfortunately, folded in 2018. But similar programs still exist, all across the country, and they’re worth seeking out.
Many are financially supported by a pilot Medicare program, folded within the Affordable Care Act, called “Independence At Home.” (It is one of many small, imaginative Medicare initiatives that should be expanded to cover everyone who needs them.) Among them are Doctors on Call in Brooklyn, New York; the Visiting Physicians Association in Flint, Michigan; House Call Providers of Portland, Oregon; and others listed on page 241. You can find others, such as the excellent House Call Program at the University of California at San Francisco (UCSF) within medical school geriatrics departments, which train young doctors.
Even if you must pay out-of-pocket, try to find a house call or visiting nurse program if you can afford it. Many private house call doctors are listed by zip code on the websites of the American Academy of Home Care Medicine and the Visiting Physicians Association. If you can’t find one, give yourself credit for trying: these needed services are few and far between.
UPGRADING ADVANCE DIRECTIVES
To reduce the chances of putting yourself (or an elder whom you care for) through one or more grueling and futile end-of-life medical experiences, I suggest upgrading the advance directive to a more detailed Physician’s Order for Life-Sustaining Treatment, or POLST. (In some states, this is called a Medical Order for Life-Sustaining Treatment, or MOLST.) A portable one-page document printed on bright pink paper, a POLST is filled out by a doctor, in consultation with the patient or the health care advocate. Because they are official “doctors’ orders,” they carry much more weight within health systems than do advance directives, which are “only” signed by the patient.
The POLST or MOLST gives you a chance to acknowledge that many once-desired medical interventions are now unwanted. Honored in most states, they are revolutionary because they break down institutional silos and are recognized by nursing home staff, emergency medical personnel, and hospitals alike. Many family caregivers and nurses say that POLSTs are frequently lost or misfiled, so keep multiple backups, all copied on bright pink paper.
Most POLSTs and MOLSTs list three options:
• Comfort Measures Only, which allows painkillers but forbids antibiotics, CPR, intravenous fluids, and ambulance trips to the hospital.
• Limited Treatment, which permits antibiotics and IV fluids, but forbids aggressive measures like CPR or intubation, and may or may not permit transport to a hospital, depending on which boxes are checked.
• Full Treatment, which means doing everything possible to prolong life: resuscitations, tests, medications, transport to a hospital, placement on a ventilator, and admission to intensive care.
Asking a doctor to sign a POLST does not automatically mean welcoming death with open arms. It’s not an invitation for medical neglect or a way of saying “do not treat me.” Many people, for instance, are fine with antibiotics and intravenous fluids, but not with more invasive treatments. Your doctors are not your moral arbiters—nor are your relatives. There are no wrong answers. Your choices will reflect your deepest sense of what is right for you. (When people have dementia, their medical advocates should fill out POLSTs on their behalf, as I will discuss later in this chapter.)
* * *
POLSTs usually include a separate line for a do-not-resuscitate order (DNR), sometimes called an “allow natural death” (AND) order. This is a mercy, because CPR for the frail is brutal and usually ineffective. Fewer than 8 percent of people over age seventy resuscitated outside a hospital ever return to independent living. Almost all suffer pain and trauma during an attempted resuscitation, which includes shocking the heart with an electric defibrillator and forcefully pushing on the chest, often breaking brittle ribs. Some die within hours, days, or weeks of one or more attempted resuscitations, while others survive with permanent brain damage. Emergency room staff often suffer “moral distress” when they feel torn between allowing a gentle natural death, and adhering to the hospital’s protocols, which in the absence of a POLST usually require “doing everything” to prevent death, no matter how futile and painful.
A doctor can also write up a DNR as a freestanding medical order, but depending on regulations that differ state by state, paper DNRs are not always honored by paramedics who respond to 911 calls. (A notable exception is Oregon, which trains all its paramedics to immediately recognize and honor POLSTs and DNRs.) This has led some ICU nurses to get chest tattoos reading “no code” or “do not resuscitate.” But medical staff sometimes ignore even these bold inked messages if they’re not backed up by official paperwork!
The only DNR symbol recognized in every state is a metal bracelet, similar to an allergy alert, obtainable from the Medic Alert Foundation with a doctor’s order. (Many states issue plastic bracelets valid only in their state.) Keep in mind that if a frail person arrives at an emergency room in extremis, without an advance directive or a vigilant family member, all systems will usually spring into action to prevent death.
Keep the POLST and DNR forms on the door of the refrigerator, along with the document naming a health care decision maker. Put laminated copies in the trunk or glove compartment of the cars of anyone who might drive the frail person to the hospital. As ever, it’s
crucial that all caregivers understand what the patient wants (and doesn’t want) and are willing to abide by it. Prior discussions with family members, confirmed in a written POLST, have helped many people in a crisis.
COPING WITH DEMENTIA
Dementia was once conceived of as one of many forms of mental impairment. But doctors, led by the pioneering dementia specialist Susan Mitchell of Harvard University, are increasingly describing it as a terminal illness, albeit one that moves at a glacial pace. It affects not just the brain but the entire nervous system. In its end stages, sufferers not only lose the ability to recognize loved ones but forget how to chew, swallow, walk, and sit up. Being bedbound ushers in a cascade of problems, often including a fatal pneumonia or a urinary tract infection. Dementia sufferers can benefit from palliative care, and eventually hospice, just as much as people with any other fatal illness. But few get it.
Because medical technologies can now prolong the lives of people with dementia almost indefinitely, their caregivers face moral dilemmas unknown to earlier generations and unaddressed by Hippocrates. At a time when a daughter, son, or spouse may be overwhelmed with caregiving, or may want to grieve and simply be present, he or she may be called upon to decide when to stop medically prolonging a life that has become filled with suffering.
Unfortunately, few caregivers have the benefit of advance directives that directly address dementia, and our demented relatives usually can no longer express their wishes. In the absence of clear guidance, relatives often opt to allow more uncomfortable, life-prolonging treatments than they might choose for themselves. Nothing can make this easy, but I hope the following suggestions will help.