by Katy Butler
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.”
SHIFTING TO COMFORT CARE
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.
ENJOYING YOUR RED VELVET CAKE
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.
Ways to Prepare:
• Recognize advanced frailty and protect yourself, or someone you love, from medical overtreatment.
• Avoid the emergency room and the hospital. Find home-based medical care if you can. Consider a shift to comfort care.
• Get a POLST or MOLST signed by a doctor and consider a do-not-resuscitate (DNR) or allow natural death (AND) order. Get a physician’s order to deactivate an implanted defibrillator. POLST and MOLST forms for each state are available at POLST Paradigm (Polst.org).
• Consider halting dialysis.
• Relax dietary and other restrictions. Enjoy the time that remains.
—CHAPTER 6—
Preparing for a Good Death
Making Good Use of the Time You Have Left • Finding Allies in Hospice • Next Steps • Settling Your Affairs • Choosing the Time of Death • Loving, Thanking, and Forgiving • Getting Help from Your Tribe
Awakened
In advanced age, my health worsening,
I woke up in the middle of the night
and experienced a feeling of happiness
so intense and perfect that in all my life