When It’s Time to Say Good-bye
by Sharon Goldberg
“Every life is different from any that has gone before it, and so is every death . . . . For each of us there may be a death that is the right death, and we should strive to find it while accepting that it may prove ultimately to be beyond our grasp.” So wrote Dr. Sherwin Nuland in “How We Die.” My father died September 22, 2010. Ever since, I’ve been haunted by the memory of his last days and preoccupied with thoughts of my own. Did Dad get the death he wanted? Will I?
Until he turned eighty, Dad was healthy. He never smoked or drank. Never overindulged in candy or ice cream or French fries. He always wore his seatbelt and observed the speed limit. He bowled and he golfed. Dad remained mentally acute, his memory sharp, until the last weeks of his life. Even though he closed his law office, finally, when he was eighty-eight, clients continued to call him for advice. But when Dad reached his eighth decade, he began to deteriorate: enlarged prostate, chronic constipation, back pain, high blood pressure, diabetes, heart blockage, edema, repeated falls, and then Multiple Myeloma—cancer of the blood plasma cells.
My father drafted his own Living Will which expressed his choices for end of life care and death, as well as the companion Advanced Directives: Durable Power of Attorney and Durable Power of Attorney for Health Care-the standard State of Ohio legal documents. He designated my mother as his “agent,” the person who would make decisions if he was not able. I was next in line. My brother Sherwin third. My brother Howard fourth. An agent acts in the best interests of the infirm person after considering benefits, burdens, and risks. An agent should clearly understand what the person wants. But Dad never discussed his wishes with me. Or Sherwin. Or Howard. Did he discuss his wishes with Mom while she was alive? My guess is no. Dad was very private. Circumspect. Even secretive.
Most people, I suspect, face mortality with some fear or anxiety or sadness, but they accept it. Dad accepted it. As a lay leader of Agudath B’nai Israel synagogue, he conducted funerals and delivered eulogies. As an attorney, he probated hundreds of estates. But I’m not like Dad. I share Woody Allen’s view of death: I’m strongly against it. I keep hoping science will discover that magic elixir, that miracle cure, that genetic jackpot that allows us to live forever. Not likely. Certainly not during my lifetime. I will die, ready or not. At age 80.8 if I’m average. At 85 or 86 if my lifespan nets out half way between Mom’s and Dad’s. And unless I’m exceptional, my eighties, like theirs, will be corroded by declining health. Since that’s reality, I want my wishes for dying and death to be very clear.
My brothers and I believed Dad wanted every opportunity to live. To support our hypothesis, we assembled clues like crime scene investigators. On his eightieth birthday, from the pulpit of the synagogue, Dad thanked family and friends for sharing his milestone and humbly said, God-willing, he hoped he might be allowed to live 120 years, like Moses. When he was diagnosed with cancer, Dad opted for radiation and chemotherapy. When, after six months of chemo, Dad’s M protein level, a Multiple Myeloma marker, decreased and his oncologist stopped treatment, Dad was thrilled. And when Mom died, Dad missed her but expressed no desire to follow her. Even though he swallowed twenty pills a day, even though he was confined to a wheelchair or electric recliner, even though he was unable to shower or get into bed or sit on the toilet without help, Dad wanted to live.
Most people say they would prefer to die at home. According to “Never Say Die” by Susan Jacoby, in the U.S., only about twenty percent of us get our wish. Twenty-five percent of Americans die in nursing homes. More than half die in hospitals and twenty percent spend their final days in ICUs, hooked to machines, isolated. Dad spent the last four months of his life as follows: forty-nine days at a nursing home, forty-five days in three different hospitals (twenty-five of those in ICU), and twenty-two days in a long term acute-care facility. Dad’s life ended in a sterile, impersonal, institutional room.
The end began after my niece Rebecca’s graduation from The Ohio State University Dental School, Dad’s final outing. My partner Arnie and I flew from Seattle to Columbus for the celebration and then I drove to Lorain to spend a week with Dad at Anchor Lodge Assisted Living. Two days later, he awoke short of breath. Was it congestive heart failure? Dad was already on oxygen therapy. I pressed his Life Line alert. An ambulance rushed him to Community Health Partners Hospital.
When Dad was examined, his cardiac enzymes were elevated (a heart attack sign), his lungs were filled with fluid, and he had a persistent foot wound. Once Dad was stable, Dr. Joyce, his cardiologist, suggested Dad transfer to The Cleveland Clinic, the top-ranked cardiac hospital in the U.S., where he’d been hospitalized twice and undergone an angioplasty. By the time he left CHP, Dad had contracted an antibiotic-resistant MERSA infection.
It’s helpful, I believe, for each of us to determine our minimum requirements for life; what level of living is tolerable? Here are my criteria: Do everything possible to keep me around unless there’s no realistic hope I’ll be a functioning, mentally-competent human being. If I can’t swallow pasta and chocolate, if I can’t sense a kiss or caress, if I can’t find anything to laugh about, if I can’t appreciate HBO, if I can’t recognize Arnie or my nieces or nephew or myself, if I long for bedtime because I’m bored all day, if I can’t communicate in any form, if I can’t compose a sentence, preferably including a metaphor, let me die.
Dad never told us his minimum requirements. But my guess is he wanted to endure as long as he could, watch sports on TV, daven (pray), respond to visitors, drink orange juice, and eat crackers. If he had to spend the rest of his life hooked to a ventilator, fed through a stomach tube, confined to a bed in a special care facility, I don’t think that would have been enough.
* * *
The Cleveland Clinic doctors ran tests, adjusted Dad’s meds, and treated his infections. Dr. Ellis, his cardiologist there, recommended Dad go to a skilled nursing facility for physical therapy. I flew back to Seattle, relieved his condition had improved and he was settled at Menorah Park in Cleveland.
At the nursing home, Dad’s protein level was checked again. Elevated. His cancer had resurged. Dad was too weak for chemo, his oncologist said; it was best to treat him with blood transfusions and drugs. After twenty days, Dad was due for re-evaluation. We hoped he’d return to Anchor Lodge. Instead, his breathing grew labored. Back to the Clinic for an EKG, more lab tests, more med adjustments, and breathing exercises. Then back to Menorah Park. Sixteen days later, Dad’s blood pressure plummeted. He could hardly breathe. An ambulance sped him to the nearest emergency room, to Hillcrest Hospital.
I asked my friend Tom Webb, an anesthesiologist at Cedars-Sinai Hospital in Los Angeles, if he was afraid of dying. He said he didn’t fear death. He fears being tortured in the ICU.
Dad’s path from the time he arrived at Hillcrest was downhill with periodic spikes of progress. We hung on to those bits of hope though they were flimsy as wasp wings. A stable blood pressure. An increase in blood oxygen volume. A decrease in creatine. A cleaner x-ray. Maybe Dad would win a few more months of life. Perhaps at Menorah Park. Or an apartment with a 24-hour aide.
I believe now we were deluded.
* * *
Before Mom died, I learned about Five Wishes, an eleven-page Living Will developed by the American Hospice Foundation. Five Wishes goes beyond the boiler plate state documents to address personal, emotional, and spiritual needs around death. The document is legally binding in forty-two states. After Dad was diagnosed with Multiple Myeloma, I gave him a copy of Five Wishes and encouraged him to fill it out. He never did. Did he even read it? Why didn’t I push? Why didn’t I use Five Wishes as a springboard for discussion? Because when I was in town, there were more urgent matters: doctors’ appointments, insurance forms, bills, meals, mail, meds. Because I was already nagging him to elevate his legs, forego potato chips, move to a smaller, cheaper apartment since Mom was gone. Because Dad hated to be pressured, prodded, urged, advised, told what to do. Because his answer when he didn’t want to answer was “I’ll think about it” or “I’ll take it under advisement” or “I’m watching the game” or “I’m reading the paper” or “I’m davening.” Because during the last several years of his life, Dad’s modus operandi was delay, delay, delay. He completed tasks on his own timetable. Last minute. He refused to move from home until he had no other alternative. He refused to close his office until the building heat no longer worked. He refused to comply with protocol at Anchor Lodge-he was late for meals and kept aides waiting-until the manager said he would not be allowed to stay. As Dad lost his independence, he tried desperately to hold on to his waning ability to control his life.
At Hillcrest, doctors diagnosed Dad with pneumonia and infused him with IV antibiotics. They planned to discharge him. His lung function tanked. He was moved to the ICU. I flew back to Cleveland. An eminent pulmonologist with the bedside manner of a reptile delivered his prognosis: Dad’s lungs were failing; nothing more could be done. Dad had to make a decision: choose intubation, his breathing controlled by a ventilator, and take a longer route to death, or forego intubation and let nature take its course. Dad, calm but annoyed, asked for Dr. Ellis’ opinion. Howard phoned Ellis. Ellis spoke to the pulmonologist. Then Ellis called my father. With genuine kindness, the doctor said he was sorry but some things can’t be fixed. We felt numb. Dad remained calm. The nurses pressed him for a decision. What about his DNR status? Did he want to switch to Do Not Resuscitate from Full Code which specifies, in the event of cardiac arrest or respiratory distress, do everything possible to keep him alive? Dad said he would decide the next day. A few hours later, a new nurse asked for his decision. We were appalled by the pushy nurses, the reptilian doctor, the entire atmosphere at Hillcrest. If only Dad were at The Clinic. We told the nurse to lay off. An hour or so later, Dr. Ellis called my brother again. He’d reconsidered, “I can’t say for sure there’s nothing more we can do for him at The Clinic.” He offered to arrange for Dad’s transfer. Dad said, “How soon can I go?” He wanted to fight. Everything the pessimistic pulmonologist predicted came true anyway.
According to The Encyclopedia of Death and Dying, the Lugbara of Uganda and Zaire believe dying right is a performance that should take place in the individual’s own hut with family gathered to hear last words. The dying person has settled affairs with family and community and is prepared for passage. He should be alert and capable of communicating. Her final hours should flow peacefully without physical discomfort or spiritual distress. I think the Lugbara have the right idea.
I spent the night at Hillcrest sleeping on a couch in the family lounge. I instructed Dad’s nurse to wake me immediately if his condition changed. The next morning Dad transferred to The Clinic, his intubation decision still deferred. A reprieve.
That evening, I celebrated my sixtieth birthday at Mama Santo’s in Little Italy with my family: my brother Sherwin, sister-in-law Sandy, cousin Debbie, niece Rebecca and her fiancé Jamie, Rebecca’s twin Allison, my nephew Jeremy, and his wife Vanessa. The family had raced into town from Columbus and New York and Dallas to see Dad. My brother Howard was at home sleeping. We laughed, toasted, speculated. We were giddy with hope. I was waiting for my tiramisu dessert, with a birthday candle, when Jeremy’s phone rang. Howard. Dad could barely breathe. Dad was sedated. Dad was in no condition to make a decision. Should they intubate? We raced back to The Clinic, conferred with Dad’s doctors, and decided, yes. Intubation, we were told, was not irreversible; Dad’s breathing could improve and he might no longer need the ventilator. We didn’t dwell on what would happen otherwise.
Two days later, Dad was alert and responsive. He’d rallied. My cousin Hindea visited from Toledo. Debbie returned to New York. But that day was Dad’s last good day.
My Uncle, Sanford Brown, my Mom’s oldest and last surviving sibling, died seven months after Dad. Weak and short of breath, he was ambulanced to Hillcrest. Doctors intubated him. They inserted a Pacemaker. But Sanford’s kidneys began to fail. His wife and children agreed to dialysis. Doctors tried to wean him off the ventilator. No luck. The next option was a tracheotomy, an incision in the neck through to the trachea allowing a breathing tube to be inserted. Sanford’s family knew he did not want a tracheotomy. They surrounded his hospital bed. Doctors removed Uncle Sanford’s breathing tube. He died six hours later. Unlike Dad, Sanford spent only one week in the hospital.
* * *
The next few days-or was it a week?-are a blur. Dad tethered to a blinking black monitor, hooked to clear bags of IV fluid, invaded by a breathing tube and a feeding tube, sedated on and off, unable to talk, unable to eat, unable to hold a pen, us sitting by his side, conferring with doctors, calling for nurses, waiting for test results, phoning relatives, drinking coffee and Coke, consoling parents and brothers and sisters and children of other critical patients.
After ten days on the ventilator, Dad, like Sanford, required a tracheotomy. My brothers and I agreed to the surgery. The doctors explained the procedure to Dad. He nodded okay. Did he understand? It was the last time he had any input into his treatment. Dad’s pneumonia cleared. Then he developed another infection, I don’t remember what. Then ventilator-related pneumonia. Then his kidneys began to fail. Then we agreed to dialysis.
One day, Dad tried to talk, soundlessly but fiercely mouthing words, his eyes bulging and angry. I could tell he was saying, “I want. . .I want. . .” But what did he want? Oh my God, I thought, is he saying “I want to die”? Howard and I spoke with Dad’s social worker. We asked questions, debated options, sought a certainty she could not provide. I had an idea. Dad was hard of hearing, so I printed on a piece of paper in large capital letters: Do you want to die? Dad stared at the question and shook his head no. Then, I printed Do you want to live? He shook his head yes. “Well,” the social worker said, “That’s pretty clear.” So we continued down intervention road. Looking back, I think Dad may have been trying to say, “I want orange juice.”
How does a person decide it’s time to say good-bye? Will I have an epiphany, like an alarm clock going off? Or will clarity creep up on me like an ocean tide? Mom knew. While in the hospital following her ninth congestive heart failure episode in fourteen months, and while recovering from a nasty gastrointestinal infection, she had a heart attack. “This is it,” she said to me on the phone before I flew to Ohio. “It’s time. There’s too much wrong.” Dr. Joyce’s instructions to Mom’s nurse were to wait for me, give me time with Mom, then disconnect her from the respirator. When I arrived, Mom was deep in a morphine haze. I sat with her. I held her hand. I told her I loved her. A nurse turned off the machine. Within seconds, Mom took her last breath. Gone. Like a puff of smoke.
My brothers and I studied Dad’s Advanced Directives as if they were the Dead Sea Scrolls. We parsed words. We analyzed the definition of “terminal.” Debated whether Dad’s condition or sub-conditions were reversible, curable, or treatable. We examined the hospital’s Policy and Procedures Manual. We consulted our cousin Allen Marcowicz, an internist and professor. I checked legal opinions online. Howard researched religious sources and we haggled over the differences between Orthodox and Conservative Jewish views. Could Dad regain the ability to make decisions? Were we prolonging life or prolonging death? We agonized over every choice but opted for intervention every time. What was the point? Dad’s lungs were failing, his heart was failing, his kidneys were failing. And once those organs start shutting down, oxygen doesn’t get to the brain, so the brain shuts down, too.
Finally, Dad was sufficiently stable to leave The Clinic and transfer to Kindred Hospital, a long term-acute care (LTAC) facility. There, we hoped, he might be weaned off the ventilator. We didn’t know that eighty percent of patients on an ICU floor in LTAC die there. A few days later, we learned that Dad’s feeding tube, like the breathing tube, was just a temporary device. The next step: a stomach tube. Another surgical procedure. We agreed to that, too. Once you begin intervention, withdrawing treatment feels like green lighting death. It’s easier, I think, not to start in the first place. The stomach tube was never inserted because Dad’s GI doctor detected an obstruction on an x-ray. Dad died before the issue was resolved.
Like my father, I have Advanced Directives, but I know now they’re inadequate. It’s my turn to complete Five Wishes so my agents—Arnie and Debbie first, my nieces next in line—know how to act for me if I’m unable to make decisions. Every time I start to fill out the form, every time I think about how I’d prefer to die, I feel scared and queasy and old. Here’s what I’ve figured out so far: I wish to be given enough medication to relieve my pain, even if it means I’ll be drowsy or sleepy or babble like a baby, even if the medication will hasten my death. I wish to have warm baths often. I wish to be massaged with warm oils. In fact, I want deep tissue massages. I wish to have my nails clipped and my hair and teeth brushed. A blow dry would be nice. I’d like a little blush and lipstick, too. (I’d prefer not to die looking ugly as a Gorgon, but maybe I won’t give a damn.) I wish to have people with me, especially Arnie, Sherwin, Howard, Debbie, and my nephew and nieces. Also good friends, if they’re local, and long distance buddies if they can get to Seattle. I wish to have my hand held. I wish to be talked to. No praying in my room. No religious readings. If you want to pray on your own, I guess it can’t hurt. I wish to die in my home, amidst my orange and purple furniture and collection of masks. I wish to hear The Beatles, especially “I Wanna Hold Your Hand,” and classical music, especially The Brandenburg Concertos. Do not play “Eleanor Rigby”; it’s depressing. Do not play “Pachelbel’s Canon”; it was my wedding processional and I’d rather not be reminded of my ex-husband. I wish to be read stories from The Best American Short Stories or a novel by Jonathan Franzen or Michael Chabon. I wish to be cremated. I wish my ashes to be scattered by my loved ones in the waters of Belize or Mexico during a vacation provided by my estate. If there’s a memorial service for me, I don’t want anyone to wear black. If you wish to make a donation in my memory, I suggest LifeWire, a non-profit that supports victims of domestic violence; I was on their Board and they do great work. And I want a party maybe six months after my death where those dear to me gather, dance, eat superb food, and remember me fondly. Maybe even read some of my stories and essays aloud.
If anyone asks how I’d like to be remembered, please say I loved my family and friends, I loved to travel, I loved to write, I loved to ski, I loved to laugh, I loved to talk and talk and talk and analyze and speculate and hear about the triumphs and tribulations of those whose paths crossed mine. If it seems true for you, think of me as Arnie once described me: intelligent, creative, and adventurous.
Dad survived at Kindred for twenty-two days. Here’s what I recall:
One day I said, “Dad, you’re on dialysis. Is that okay?’ His response was a shrug, one I’d seen many times before. It meant, “So what can you do?” I told him about the stomach tube. He didn’t respond.
At least once, Dad tried to pull out his feeding tube.
Dad’s legs swelled huge with edema and erupted in pale pink seeping bubbles as his body tried to expel fluid.
I rubbed Dad’s head, stroked his hand, wiped crust from his lips, pulled up his blanket, adjusted his pillow, raised the TV volume, reported on the weather.
I asked a speech therapist if she could tell what Dad was saying when he tried to talk. She couldn’t. Why didn’t I think to bring in a lip reader?
On Rosh Hashanah, the Jewish New Year, Sherwin brought a shofar, a ram’s horn, to Dad’s room and blew the resounding calls, ancient as the Bible, to celebrate the holiday. Did Dad realize it would be the last time he heard the shofar? Was he, perhaps, waiting for Rosh Hashanah to die?
We made one rational decision. If Dad suffered cardiac arrest, no CPR. Dr. Shoag, his physician at Kindred, said Dad’s chances of surviving CPR as a functional person were practically zero. Why subject him to painful chest compressions and defibrillation shocks?
Dad rebounded some. His vitals were stable. Dialysis was working, although he would likely require it permanently. He reached step two in the twenty step ventilator-weaning process. He did not seem to be in pain. Was Dad’s brain function compromised? Who knows? I’d spent three weeks in Cleveland and I wanted to go home.
My last hope for living longer than biology allows is cryogenics. I’ve seriously considered paying to freeze my head or whole body until science discovers a cure or fix for whatever kills me. But there’s a problem. According to Steven Weiner, Arnie’s cousin, who once invested in a cryogenics company, freezing is easy; but, so far, no one has figured out a way to revive a corpse.