Daniel Hoefer, MD, is the chief medical director for hospice, outpatient palliative care, and other serious illness programs for the Sharp Rees-Stealy Health System, a huge nonprofit HMO in San Diego. He sometimes tells his older patients to imagine their bodies as bank accounts. From the twenties through the late forties, he says, these physiological accounts overflow with energy and resilience. With all that vitality to draw on, people recover quickly and well from accidents, illnesses, and surgeries.
But the energy storehouse of the human body is finite. From late middle age to advanced old age, we draw down our reserves. The immune system weakens, degenerative diseases afflict vital organs, muscles wither, nerves die off, and recovery from any blow takes longer. In time, the bank account runs out. Then any trauma—a fall, an accident, even a well-intentioned but stressful medical procedure—can have disastrous consequences.
Take, for instance, what happened to Daniel’s father.
Rick Hoefer was a navy veteran and retired airline pilot who, as a young man, loved to play the clarinet and ride motorcycles. He lived with his wife, Marie, in Mission Viejo, a tree-lined suburb in Orange County about two hours’ drive from Daniel’s home in San Diego. The Hoefers had lived on the same street for forty years. It was a place where neighbors looked out for each other.
Rick celebrated his eightieth birthday with his mind still clear. He socialized with his four grown children and loved to watch his grandchildren play in his pool. But he was coping with general age-related decline, compounded by three other serious coexisting health conditions: diabetes, heart disease, and a low-red-blood-cell problem. He slept ten to twelve hours a day. He didn’t go out much and he used a walker to shuffle from room to room.
He was, as Daniel put it, “toting along, doing okay,” living quasi-independently with help from his wife and neighbors and sporadic check-ins from Daniel and his three siblings. Then, when Rick was eighty-three, Daniel noticed that his father’s ankles were swollen with fluid, often a sign of heart trouble. A cardiologist discovered that Rick’s aortic valve was narrowed, limiting his heart’s ability to pump effectively. The doctor recommended an innovative procedure known as a TAVR (trans aortic valve replacement). A TAVR involves floating an artificial valve down an artery and popping it into place remotely, without cutting into the chest. It is often suggested for people too old and frail to withstand classic open-heart surgery.
Daniel Hoefer had spent decades caring for frail older people. He worried that his father didn’t have the reserves to bounce back from a TAVR. Looked at one by one, each of his father’s health problems seemed manageable. But in combination, they were more troubling.
In a talk he gives to other doctors, entitled “If Only Someone Had Warned Us,” Hoefer reminds his fellow doctors of the many studies showing that frail patients are more likely to suffer complications, to stay in the hospital longer, and to be discharged to skilled nursing after surgery rather than returned home.
Even for the young and robust, hospitals can be not only uncomfortable, but dangerous. More than a quarter of a million Americans die annually from hospital errors, such as hospital-acquired infections and medication mix-ups. Such mistakes are the nation’s third leading cause of death, and frail people are less likely to survive them. The frail are also more vulnerable to ordinary hospital stresses, like noise, unhealthy food, nighttime interruptions for the taking of vital signs, and long periods of inactivity.
Thanks to recent reforms, hospitals and surgeons are carefully tracked and rated harshly by government agencies if their patients fall in the hospital, don’t survive for thirty days after surgery, pick up an infection, or are rehospitalized within thirty days of release. But nobody tracks whether those same patients lose their memories or their ability to walk, or have to move permanently to a nursing home after a hospital stay. Few, outside the family, will even know.
Which explains why Daniel’s concern was so simple. His father’s heart might function better after the procedure. But the human being containing the heart might function worse.
Daniel sent his father medical studies and peppered him with questions. Had the cardiologist discussed surgical risks “in the context of your frailty”? Under the best of circumstances, the TAVR carried a 14 percent chance of a serious complication, such as a stroke, heart attack, severe bleeding, or kidney damage. Rick’s doctor did in fact discuss those risks, but he didn’t foresee the possibility of catastrophic, global, mental, or physical decline.
Rick thanked his son for his concerns. He and his cardiologist settled on a less invasive outpatient procedure, called a “balloon valvuloplasty,” to stretch open his stiff aortic valve.
In a hospital cardiac catheterization lab, doctors floated a soft thin tube down a blood vessel to Rick’s heart and then inflated a balloon to widen the valve and improve blood flow. Rick didn’t spend a single night in the hospital. His heart pumped more efficiently and the extra fluid came off his legs like magic. According to the standards by which surgeons, hospitals, and government agencies judge success, the procedure was a success.
But not for Rick. Everything Daniel feared came true.
It wasn’t a heart attack, stroke, or a medical error that undid his father. It wasn’t even a prolonged hospital stay. It was a cascade of inflammatory reactions to stress, affecting many bodily systems, including Rick’s brain. Before the valvuloplasty Rick had slept ten to twelve hours a day. Afterward, he slept sixteen, and then twenty. Beforehand, he’d been alert and involved with life. He came home from the procedure exhausted, disoriented, inattentive, and sometimes delirious. He stayed confused for three weeks.
Rick Hoefer rarely thought with clarity again. He had hallucinations at night that frightened his wife.
Older people lose a stunning 5 percent of their muscle mass each day they lie in bed. After three weeks of inactivity, Rick’s withered legs were little more than bone covered by paper-thin skin. He was too weak to sit up in a chair. Before, he’d trundled on his walker from room to room. Now it took two people to get him out of bed and into a wheelchair. He never walked again.
Prior to the valvuloplasty, Daniel’s father could have been knocked over by a feather. The procedure turned out to be that feather. Daniel helped him enroll in hospice care, and Rick died peacefully in his sleep, in his own home, nine months later.
“House of Cards” describes a state of health as precarious as a structure built of playing cards, and it is common in people in their nineties or in the mid to later stages of dementia. When they take a “great fall,” it’s unlikely that all the king’s horses and all the king’s men will ever put them back together again. Counterintuitive as it seems, protection from inappropriate forms of medicine can now be at least as important as access to the care that helps most—the majority of which will be gentle and, if possible, delivered at home. Good medical care now includes finding a physician house call service, shifting to a focus on comfort, upgrading advance directives, thinking through a pathway to a peaceful death, and doing everything possible to reduce the risk of a traumatic hospital stay or emergency room visit. The most realistic goal now may simply be this: to not make a bad situation worse.
This can be a confusing shift to navigate. The hope of improvement from a last-ditch medical technology is tantalizing. Ever since Eli Whitney invented the cotton gin, our culture has nourished the illusion that technological advances will soon usher in a utopia. But in the words of grief counselor Meghan Devine, “Some things in life cannot be fixed. They can only be carried.”
Most people in the House of Cards have “the dwindles” or are on a looping or stair step trajectory of final decline. About a quarter of Americans become frail in their seventies. By the age of eighty-one, about 40 percent of us are frail. Very fit and resilient people, about a quarter of the aging population, will reach the end of their lives having spent only a few weeks or months being frail.
It’s important to recognize frailty as a distinct health stage, because medical approaches that helped earlier can now harm. Now is the time to eliminate medical risks, to lower one’s expectations of medicine, and to get clear on what “living well” means as life is slowly winding down. If you, or someone you care for, is still on the conveyor belt of fragmented, crisis-focused medical care, with a focus on prolonging life rather than preserving function and relieving suffering, it’s wise to find a way off.
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.
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.
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.
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.
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.
If you are the health care agent, I recommend you start by asking for a sketch of the trajectory of the illness, where your loved one is on the trajectory, and what you can expect in the future. In light of this information, I suggest the following exercise. Imagine that the old, fully functioning “self” of the person you love, by some miracle, could return to you in full mental and physical health for fifteen minutes. Lay the situation before them, and listen to what they would say. I did this when my mother asked me to help her get my father’s pacemaker deactivated. I vividly imagined him sitting at the kitchen table, and shaking his head in horror at what his life had become. It gave me the strength to support my mother and to ask my father’s doctors to deactivate the device.
You might also get clues from your loved one’s behavior, especially if they are miserable, agitated, tied down, or drugged. Ask yourself what you would want if you were in their shoes, and what course of action will leave you with the fewest regrets.
There is no consensus in our society, religiously or medically, on the moral path forward. This is uncharted territory. Orthodox Judaism prohibits even removing a pillow from beneath a dying man’s head if it will hasten death by a minute. The Catholic Church has repeatedly stated that its followers do not have to submit to “extraordinary measures” (like ventilators) to prolong life, but adds that our lives belong to God, not to ourselves, and should be lived for His glory. Some doctors push for feeding tubes, saying things like “nobody starves to death on my watch,” while other doctors view prescribing medications to hasten a difficult death as an act of compassion. Given this wide range of moral stances, you must delve into your own beliefs and make decisions on behalf of people whom you love deeply, know well, and are responsible for. You may find yourself challenging medical protocols or facing the moral judgments of others. If so, I hope you find comfort, as I do, in the words of the philosopher Zygmunt Bauman. “Uncertainty is not a temporary nuisance which can be chased away through learning the rules, or surrendering to expert advice or just doing what others do. Instead it is a permanent condition of life. . . . To be responsible does not mean to follow the rules. It may often require us to disregard the rules or to act in ways the rules do not warrant.”
I personally believe that death is part of God’s (or Nature’s) plan, and that a loving God never intended to force people to suffer at the hands of advanced technologies that cannot restore them. Yes, the Bible recounts miraculous healings, but its miracles are grounded in faith, not in man-made inventions with a potential for both good and evil. It’s hard to morally justify putting people through regimens that cause them suffering when they can neither understand the purpose of the pain inflicted, nor meaningfully assent to it. We must normalize saying “no”: depriving a demented person of a natural death may seem loving, but it is rarely kind. The suffering of caregivers also deserves moral weight. If your doctor is not on the same page, find another more attuned to your values.
The double-edged medical technologies you are most likely to confront are: CPR, dialysis, ventilators, implanted cardiac defibrillators, pacemakers, feeding tubes, intravenous lines for drugs and saline solutions, and antibiotics. All delay death, often painfully, without restoring well-being. Antibiotics can deprive someone of the blessing of a relatively gentle death from pneumonia, once called “the old man’s friend.” Artificial hydration can draw out dying for weeks. Many patients with feeding tubes are drugged or tied down to prevent them from pulling them out. For more detailed guidance, I highly recommend the Alzheimer’s Association’s free pamphlet “End of Life Decisions,” and the book Hard Choices for Loving People, written by hospice chaplain Hank Dunn.
Sometimes a family advocate must become a warrior. That was the case for Karen Randall, a veterinarian in Washington, D.C., when her father, Ed Walski, entered the House of Cards. Ed was a widower in his early eighties who’d spent his working life at IBM, repairing mainframes in the days when computers took up entire rooms and then moving into management. He had dementia and Parkinson’s disease.
In the last year of his life, staff at Ed’s assisted living complex sent him to the hospital nine times—sometimes because he’d fallen; often because he was agitated and screaming, perhaps due to untreated pain; and sometimes because he had a urinary tract infection or pneumonia. The first few times, Karen rushed to meet the ambulance at the hospital and did what she assumed was the loving, caring thing. She insisted doctors pull out all the stops, run every possible test, and as she put it, “find out what was causing his bizarre changes in behavior and fix it.” Her father repeatedly had his blood drawn and his urine analyzed, followed by CAT scans, MRIs, X-rays, and echocardiograms. “I really needed answers,” she remembers. “I wanted my dad back.”
The tests were often inconclusive, and after three days in the hospital and sometimes treatment with antibiotics, Ed would go to a nursing home for three weeks of rehabilitation. “I’d say, okay, we got him through this and now he’s going to get rehab and be back where he was,” Karen said. “But he never came back. It was a stair step down to the basement.”
Karen realized that “these hospitalizations weren’t improving anybody’s quality of life,” she said. “The illnesses were attempting to take him, and we just wouldn’t let them. My father never smiled. His life had gotten miserable. I was watching him growing more and more angry and frustrated and incapable. But nobody was offering us any alternative.”
She shifted her focus from cure to comfort. She asked his assisted living residence not to send him to the emergency room, and tried to get him enrolled in hospice. But the residence wouldn’t budge from their standard protocols, and the hospice turned him down: neither Parkinson’s nor the early stages of dementia are hospice-qualifying diagnoses.
During his final ER visit, after yet another fall, doctors asked Karen to authorize a swallowing test. The staff was worried that his pneumonias were being caused by inhaling tiny bits of food because of poor swallowing. The test results could pave the way for inserting a feeding tube.
Karen said no. If she wasn’t going to authorize the tube, she saw no reason to allow the test. Years earlier, her father had signed a POLST document and appointed her as his health care advocate. “I was able to flash back to him saying, ‘Hell no! I don’t want any feeding tubes!’ ” she said. “That almost made it easy.” But not too easy. Three times in one day, Karen was asked—by a nurse, a social worker, and a nursing supervisor—whether she understood that without a feeding tube, her father might develop a pneumonia that could kill him. She stuck to her refusal. When her father was discharged, she moved him to a smaller assisted living complex, this one run by an RN who agreed to do her best to keep Ed out of the hospital. He died in the new place three weeks later, of yet another pneumonia. Karen was able to get him qualified for hospice only three days before he died, on the basis of a diagnosis of Lewy body dementia, which is a hospice qualifying diagnosis. After months of falling through the cracks in the system, Ed’s final days were peaceful.
“When you start out, you want to do the best for them, and it takes a while to figure out where things are going,” Karen said. “At the end, when I was making the big decisions and everybody was questioning me, I was really struggling. I expected to be left with a lot of questions. But after he died, everything became clear to me. I was proud of the way I had helped him leave this world. It didn’t feel right at the time, but it sure did in hindsight.”
Consider asking doctors to switch to “comfort care measures only.” The phrase “comfort care” helps everyone involved feel more comfortable—not only the gravely ill, but their family members, medical teams, and nursing home staff. Simply stating what you don’t want can provoke resistance and make some staff members feel they are being asked to abandon a patient. Asking for what you do want provides them with alternative ways to express their caring, and is an achievable goal. It is almost always possible to reduce someone’s suffering.
Comfort care is what it sounds like: saying yes to medical attention that keeps a person comfortable and no to any treatment that causes pain or distress. This simple little phrase is widely used but not explicitly defined in the medical world. Practically speaking, it means gentle, noninvasive care for people who aren’t officially on the hospice benefit and therefore can’t be seen or billed by a hospice team. Many doctors who have spent their careers devoted to people with dementia believe that “comfort measures only” ought to be the standard of care for their patients.
It is what I want if I develop dementia. Here is the letter I’ve written, as an amendment to my advance directive, to guide my medical advocates. It contains a thorough description of my conception of comfort care.
Dear Medical Advocate;
If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you.
• I wish to remove all barriers to a natural, peaceful, and timely death.
• Please ask my medical team to provide Comfort Care Only.
• Try to qualify me for hospice.
• I do not wish any attempt at resuscitation. Ask my doctor to sign a do-not-resuscitate order and order me a do-not-resuscitate bracelet from the Medic Alert Foundation.
• Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.
• Do not transport me to a hospital. I prefer to die in the place that has become my home.
• Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.
• Do not treat my infections with antibiotics, give me painkillers instead.
• Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.
• Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.
• If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.
• Do not force or coax me to eat.
• Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal.
• Ask to stop, and do not give permission to start, dialysis.
• Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.
• Do not give me a flu or other vaccine that might delay my death, unless required to protect others.
• Do keep me out of physical pain, with opioids if necessary.
• Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment) to confirm the wishes I’ve expressed here.
• If I must be institutionalized, please do your best to find a place with art workshops and access to nature, if I can still enjoy them.
Most people in the House of Cards stage have two years or less to live. There is little future to sacrifice for. This is a turning point: from fighting to stay functional to accepting decline, savoring the brief time left, and looking forward to preparing for a peaceful death. Enjoy the day.
If you want to (or a frail person you care for wants to) eat bacon and ice cream, indulge. Good eating habits pay off over decades, not months. Exercise and physical therapy can still help maintain function, but some people with dwindling energy and multiple ailments simply refuse it. If you’re a caregiver, it’s time to stop nagging and let go.
Many geriatrics specialists recommend lightening up on tight control of cholesterol, blood pressure, and blood sugar. Blood pressure medications can increase the risk of falls. Severe diabetic complications take years to develop and many doctors take a more relaxed attitude toward moderately elevated blood sugar in frail elderly patients. Go along with them. For people with limited pleasures, enjoying favorite foods may be more important than reducing, infinitesimally, their time on earth. If you’re hyper-focused on seeking aggressive medical care for a declining loved one, ask yourself whether anxiety about impending loss is skewing your judgment. Many people in the House of Cards feel better when their doctors reduce other medications and focus more closely on managing pain.
Parse medical appointments carefully, and ponder which are effective. I think it’s worthwhile to keep nurturing a good ongoing relationship with a geriatrician or personal doctor, to have a yearly medication review, to update advance directives with each change in health, and to have a specialist or nurse case manager carefully manage chronic problems like congestive heart failure. But if you are going to a specialist’s office merely to monitor and document a condition (like dementia) for which no good treatments exist, consider cutting back, unless you need the evidence to qualify for hospice or another benefit. You decide how you want to spend your days, and the energy of your caregivers. By the same token, have a frank discussion with a doctor about getting a medical order to deactivate an internal cardiac defibrillator, if it hasn’t been done already. Its shocks are painful, will rarely prolong life by more than a few months, and can interfere with a peaceful death. In all things, make sure that medical treatment improves how you feel or function, and doesn’t burden you or waste your precious time.
Dietrich Mayer is six feet four and solidly built, a car mechanic who grew up in Queens Village, New York. When his mother, Betty, was widowed in her sixties, Dietrich and his wife bought a bigger house farther out on Long Island, with a separate apartment for Betty. She did well throughout her seventies and eighties, entertaining her grandchildren, knitting afghans for her nephews and nieces, walking to the local grocery store to shop, and doing her own laundry and cooking.
In her early nineties, Betty fell twice on her way home—once carrying a big bottle of bleach, and another time lugging a sack of potatoes. She began having brief mental blank spots when she seemed to lose consciousness for a couple of minutes, and then “come back,” apparently fine. Commonly called “TIAs” (transient ischemic attacks) these mini-strokes are temporary blockages of blood flow in the brain and usually resolve quickly. But the micro-damage can add up, promoting forgetfulness.
One autumn day, Dietrich took his mother to a big family event, an eightieth birthday party honoring his mother-in-law, held in a hotel ballroom. Betty was among the guests singing “Happy Birthday” and had just been handed a slice of red velvet cake when she started mumbling and shaking, until she lost consciousness. When she didn’t revive after a minute or two, Dietrich and his brother-in-law, a police officer, picked up Betty’s chair with her in it and carried her to the hotel entrance. Paramedics arrived within minutes. By then, Betty was awake and insisting she didn’t want to go to the hospital. But at the urging of his brother-in-law, Dietrich convinced her to do so, and followed her ambulance in his car.
At the hospital, doctors ran tests, all inconclusive. Betty kept saying she just wanted to return to the party.
A doctor entered the room. She told Dietrich that the hospital planned to keep Betty overnight, to run more tests and see if she needed a pacemaker. Dietrich drew himself up to his considerable height. “That ain’t friggin’ going to happen,” he said. “My mother needs to come home. All she wants to do is finish her cake.”
The doctor said that Dietrich would have to first sign paperwork acknowledging that he was taking his mother away “against medical advice.” Dietrich did so. The doctor shut the door, moved close to Dietrich, and said under her breath, “I can’t tell you this officially, but they do so much better when you just take them home.”
Over the next five years, this pattern was repeated during multiple hospital visits, until Betty entered a nursing home. At the suggestion of its director, Dietrich obtained a MOLST, signed by Betty’s doctor, indicating that she was not to be transported to the hospital for any reason. She died peacefully at the nursing home, at the age of ninety-seven, in her own bed.
Now get back to the party and enjoy your red velvet cake.