Margaret Munro is a Vancouver-based journalist.
My father was preparing breakfast when his blood pressure dropped and he blacked out. Keeling over backward, he hit his head so hard it punched a hole in the wall.
“Good thing I didn’t hit the stud,” he said in the emergency room at Nanaimo Regional General Hospital. He was stable, but the wobbly lines running across a monitor wired to his chest showed the critical state of his 92-year-old heart.
It had been repaired before, but now doctors offered something more – a pacemaker to keep it beating steadily.
Hundreds of thousands of Canadians have the ingenious devices, and many of them, like my father, likely had them implanted without considering all the implications.
A cardiologist stayed late, after his scheduled surgeries, to wire Dad’s heart with a German-designed Biotronik pacemaker that would restore a healthy heart rhythm. The procedure, done under local anesthetic, took less than 30 minutes.
Dad was beaming when he rolled out of the operating room that night, having avoided life’s exit ramp once again. “I’m now battery-operated,” he said.
Five years later, the pacemaker keeps his heart beating, but Dad has slipped into the dark depths of dementia. He has lost his memories and the mental faculties that made him an industry executive. He once ran mills with hundreds of employees. Now he can no longer walk, brush his teeth or use the toilet without assistance.
He spends much of the day – and night – shuffling around in his wheelchair in a locked dementia unit, unable to find his clearly marked room.
This is not the dying he – or his children – ever envisioned.
Our father, Donald Munro, was smart, proud and self-reliant. He married Nora McEwen, his childhood sweetheart, when he returned from the Second World War.
Dad managed paper mills in Manitoba, Ontario and Newfoundland, while Mom put her home economics training to work raising eight children. He handcrafted furniture, filled the freezer with fish, ducks and venison and helped build community churches, curling clubs and even a rope tow in a gully where we skied away winter weekends.
Don and Nora eventually retired to an apple orchard in the British Columbia Interior. Dad kept honey bees, raised money for the Canadian Cancer Society and spent time tracing the family history back to Scotland, where in 1773 our ancestors set sail across the Atlantic.
Dad prided himself on being prepared and having his affairs in order. He regularly updated his will, had designated executors and signed an advance directive stating he did not want “heroic” measures taken to keep him alive. To save his children the trouble, at 88 he paid for his own cremation in advance. He had a plan for the end of his life. It did not entail wandering in the darkness of dementia, his heart artificially kept beating by a device the size of a pocket watch.
But then came his fateful trip to emergency.
To some, his life-extending surgery might seem a miracle. But to those who love him and see the daily indignities of a life past awareness and coherence, it seems far from a blessing. I often wonder if Dad would have made a different choice had he and the medical professionals candidly addressed the pros and cons of it all. Yes, the pacemaker could correct his wonky heartbeat, but there was no mention as he signed up for the device that his brain might give out before the machine, although the risk was high.
My father is not unusual. A legion of bionic Canadians are walking around with wires and batteries in their chests. Another 21,000 a year – many over the age of 75 – have pacemakers installed as part of a fast-growing industry that took some inspiration from the 1931 film Frankenstein. Earl Bakken, inventor of the first wearable, battery-powered pacemaker and the founder of Medtronic, a major producer, recalled in his autobiography how he sat through the movie intrigued by the way Dr. Frankenstein’s electricity ”restored life to the unliving.”
While technology is not bringing back the dead (at least not yet), it can extend life by decades. Pacemakers are part of the $40-billion global cardiac device industry, which is forecast to hit $70-billion over the next decade as baby boomers enter their final years. And proponents of “precision medicine” now talk of using genetics and artificial intelligence to halt and possibly even reverse aging.
There is less talk about the profound societal and emotional effects of using technology to forestall death. Or about the way extending life with medical devices and treatments can prolong dying.
We may wish for a long life and a quick, graceful death, but a slow, undignified death awaits many. Fending off killers such as heart disease inadvertently increases the risk of dying from degenerative conditions such as dementia, which afflicts a quarter of those over the age of 85.
The disorienting, incurable condition destroys brain cells and insidiously robs individuals of their ability to think and make decisions. Alzheimer’s disease, associated with plaques and tangles that choke brain cells, is perhaps the best known. Vascular dementia, which is also common, occurs when strokes and heart disease deprive the brain of oxygen, killing clusters of neurons.
My father lived the modern medical dream, but in the end it led to the nightmare of vascular dementia.
Cardiologists first saved Dad’s life when a vise-like tightening in his chest took his breath away on a road trip in Louisiana. My mother raced him to the nearest hospital, a medivac was summoned and Dad was airlifted back to Canada. Surgeons in Calgary cracked open his chest, pulled veins from his leg and stitched them on to his heart to bypass three blocked arteries. He was 76.
When chest pain returned at 82, cardiologists threaded stents up through a vein in his groin and expanded the metal mesh tubes in two clogged arteries. “I’m good for another 50,000 miles,” said Dad, a mechanical engineer who had a flair for automotive metaphors.
He came to think of his body as a machine that could be repaired and tuned up at will. At 90, new lenses unfurled inside his eyeballs like tiny umbrellas, eliminating not only his cataracts but the astigmatism that had required him to wear glasses since childhood. He could suddenly see better than ever.
After those interventions, the pacemaker seemed to him the next logical step when, at 92, he landed in the emergency room with a perilously low and erratic heartbeat.
There was little discussion of the inescapable realities of aging and death. Instead, the cardiologist offered more hope – hope that the battle was not lost, that Dad’s life was not ending, that a device with a battery that can last more than a decade might get him to 100.
The pacemaker was inserted through a small incision and tucked just below his collarbone. Hair-thin wires were threaded down veins to deliver painless electrical pulses that prodded his heart to start beating steadily.
The operation went well and put an end to his fainting. But the rejuvenation Dad had hoped for never came. A few weeks later, he told me he was still feeling “kind of punky.” His GP broached the idea that he was slowing down. “My years are catching up with me,” Dad said.
Not long after that he replaced his truck with a walker. He gave up his daily Sudoku puzzle, struggled to keep his cards straight at bridge and stopped reading books and newspapers, which he had once devoured.
I knew dementia had taken hold when we sat down to watch the 2016 World Series. Dad could not follow the game or the score – shocking for a lifelong sports fan who had been able to recite the standings of not just hockey, curling and baseball teams, but individual players. He was also disinterested when Usain Bolt made his spectacular sprint for gold at the Summer Olympics. We realized he couldn’t distinguish between the runners or figure out how the race started or ended.
When the conversation turned to Donald Trump running for U.S. president, he laughed and said he didn’t need to pay attention. “I won’t be around to find out.”
He was right, though not in the way he intended.
Data on how many Canadians with pacemakers have dementia are scarce. But one U.S. study, involving 16,000 people, found individuals with dementia are even more likely to get a pacemaker than people with similar cardiac problems but no cognitive impairment. Why is not clear, but Nicole Fowler at Indiana University’s Center for Aging Research found that individuals and their families often feel they do not have much choice when doctors offer pacemakers. The pros and cons and possible ”trade-offs of quality versus quantity of life” are seldom discussed.
Saskia Sivananthan, chief science officer at the Alzheimer Society of Canada, says the U.S. findings are disturbing. She is unaware of any studies looking at pacemaker rates among Canadians with dementia or how the devices affect – and potentially extend – their lives.
Dr. Sivananthan stresses that decisions about medical interventions need to be made “holistically” and must consider possible alternatives and outcomes. And discussions about end of life ideally need to take place before families end up in emergency rooms and before dementia sets in, which can be more difficult than it sounds.
My mother – having seen her mother and grandfather die from Alzheimer’s – used to tell us that if she developed the disease: “Take me out behind the barn and shoot me.” Later, she softened the directive somewhat by saying we were not to “ruin” our lives by caring for her.
Mom, a nature lover who skied well into her 70s, failed the Mini-Mental State Exam when she was 79. “They wanted me to count backward by seven,” she said indignantly.
As her life became unhinged, my parents moved to Vancouver Island to be closer to their children. They rented a suite in a seniors’ complex offering the opportunity for couples to stay together longer “as their care needs change over the years.” It didn’t work for my parents. Mom, in her increasingly confused state, took to disappearing out the front door when my father turned on the TV for a ball game. Dad, often with the help of police, would frantically search for her.
He eventually decided to move her to a dementia care facility in Qualicum Beach. He visited every day. She died shortly after her 88th birthday.
After her death, Dad and the family didn’t spend much time discussing what he would like to happen when his death approached. Given his bypass and stents, we all assumed he would have a sudden and fatal heart attack.
To prepare, he asked two of my sisters, who trained as nurses, to take over his medical and legal decision-making if need be.
He kept busy at The Gardens, a complex in Qualicum Beach offering “boutique retirement living,” where he lived for a decade after Mom moved into care.
Dad was a poster boy for The Gardens, where a professional photographer captured him looking hale and handsome at 90. Ever the manager, Dad ran the bridge club and sat on the residents’ committee. He worked up a sweat in almost daily morning exercise classes and took long walks through the forest.
After getting the pacemaker, his life quickly went sideways.
My sisters visited daily to keep him company, do laundry, go for drives, take him for dinner, help pay his bills and taxes and manage his investments. He reluctantly agreed to let them accompany him to medical appointments and have a nurse drop by every evening to give him his medications.
There were accidents in the night, when he would mistake the humidifier or laundry basket for the toilet. He took to pushing the wrong buttons on the elevator and pulling the fire alarm.
Dad’s judgment and mental faculties were in steep decline, but he was proudly and stubbornly independent. Leaving The Gardens with his walker, he would roll down the middle of the road, oblivious to traffic, until police pulled him over.
We reached out to his doctor and the Vancouver Island Health Authority, hoping for guidance and assistance. But unlike emergency teams inserting pacemakers, dementia care tends to operate in slow motion.
After a two-month wait, a provincial home-care assessor came to see Dad. She stayed less than 30 minutes, concluded he was doing fine and recommended reassessment in a year.
We knew he needed 24-hour care and arranged a move to Stanford Seniors Village, in nearby Parksville. He got a bright room that opened onto a sunny hallway overlooking a courtyard and garden. It cost $6,000 a month – meals, housekeeping and round-the-clock nursing care included.
Dad was soon wandering away, one night going out into a snowy landscape without his coat. When a neighbour called to say a confused man was at the door, staff retrieved him and fixed him with an electronic bracelet that locked the exit doors when he approached.
Dad was now imprisoned.
Some days he thought he was part of the management team and would say he’d been busy at “meetings.” Other times he would think he was back in Newfoundland and would call my sisters saying he needed to “get back to the mill.”
Dad could no longer even follow games such as bingo. But he liked counting – the blossoms on the orchids by his bed, the hummingbirds at the feeder on his window, the “40 baths” he had in his first year ($72,000 a year bought him one supervised bath a week, which he often tried to avoid).
He still took pride in dressing himself – often in two layers of carefully buttoned-up shirts and pants. Other times, he pulled his coat over his PJs, along with his hat and gloves.
In the last year it became so difficult for him to find words and get thoughts across that he stopped trying. He could no longer use a telephone. Video calls, which used to delight him, put him to sleep. Nearly deaf and unable to start or follow a conversation, he walked the hallways. Sometimes he would have a dizzy spell and collapse, and each time, another little piece of him faded to black. The technician who last checked his pacemaker reported the device was triggering more than half of Dad’s heartbeats and had enough battery power to keep going for several more years.
More than 40 per cent of Canadians 80 or older with dementia live in long-term care. Some people decline and die quickly, while others linger for years – the facilities are very good at keeping people alive. Staff, some paid as little as $18 an hour, do what families cannot or will not do – provide round-the-clock care in a safe environment. They launder and sort clothes, change diapers and dispense medication. Meals are served like clockwork, as are juice and snacks that keep residents hydrated and their blood sugar up. Exercise and “rock and roll” sessions keep them moving in their walkers and wheelchairs. And a parade of entertainers get them singing along to tunes such as Danny Boy and You Are My Sunshine.
My siblings and I – ranging in age from 53 to 71 – have ridden the emotional roller coaster that is part of the journey. We have felt relief because Dad was being cared for 24/7, but also guilt for not being there to do more to help, frustration at the failings of government-sanctioned care – and anxiety that we could be next.
You cry when you realize your father no longer has any idea who you are. And you despair when you arrive to find him in his pyjamas and mittens trying to make his bed in the afternoon, his room reeking of urine.
After two years at Stanford, Dad had slipped to the point where he would wander into other residents’ rooms, sometimes walking away with their belongings. The resident psychiatrist, worried that he could get into an altercation, suggested a move to Eagle Park Health Care Facility in nearby Qualicum Beach – the same facility in which our mother spent the last years of her life and died curled up in a fetal position.
Dad moved into Eagle Park in May. The staff are cheerful and patient and coax smiles from the 25 residents in his locked unit when the juice trolley rolls round at ”happy hour.” Dad can travel the circular hallway freely and get fresh air in the enclosed courtyard. These days, I often find him asleep – tucked into bed in his room, in his wheelchair in the TV room or at his table in the dining area, where he frequently nods off with a bib around his neck. The staff are masters at de-escalating residents’ anxiety and frustration, but when that fails they have our permission to give Dad medication.
He often seems to be in a fog, but at times there is a glimmer of the gentle man he once was. When we take him in his wheelchair down the paths in the forest beside the care facility, he smiles at the toddlers swinging in the playground and pets the dogs out for a walk with their owners.
His decline has been harrowing and painful to witness. It’s also maddening, as the father we knew would not have wanted such a slow and prolonged dying.
He trusted and respected the medical profession and never imagined his heart would artificially be kept beating as his mind failed. He believed he had taken care of things when his lawyer drafted an advance directive – but that directive makes no mention of dementia or cardiac devices.
Could he have avoided this fate by asking and addressing difficult questions? Why did the cardiologist not warn of the high risk of dementia? Why did Dad not stipulate when to turn the pacemaker off?
I have come to accept that there are no easy answers. But after watching the way dementia insidiously crept into my parents’ lives, I realize the importance of discussing end of life realistically and openly with friends, family and professionals.
Topping my list: If I develop dementia, turn off any life-extending technology I might have and stop any life-extending medications. Few people can foresee what will kill them, but we must get better at embracing and accepting death. Yes, we can and should make the most of what the medical world has to offer, but as individuals we need to recognize that medicine has limits. Sometimes what we need is a death doula, not a doctor.
Safe and effective suicide must also be made available for those who want it. Not just for people near death who can legally request medical assistance in dying, but for those afflicted by dementia and other degenerative disorders.
More than half a million Canadians now have dementia, a figure expected to almost double by 2030.
A diagnosis of a fatal illness, be it cancer, heart disease or dementia, should trigger frank conversations about not just treatments and technology but quality of life – and death. And it should be mandatory for doctors to lay out the pros and cons before installing life-extending technologies. Consent forms should ask recipients to stipulate if, and under what circumstances, their devices should be “deactivated.”
Information on how many people opt to turn off their pacemakers is scarce, which is surprising considering that more than three million North Americans have the devices implanted in their chests.
According to the Heart Rhythm Society, an international group that represents doctors and professionals involved with the devices, patients have the right to have their pacemakers turned off, though some doctors view deactivation as assisted death or euthanasia. The painless procedure entails waving a special wand or placing a powerful magnet over the device to interrupt the signals going to the heart. One of the few studies on deactivation involved 150 Mayo Clinic patients, most of them elderly and very ill. When their devices were turned off, death usually occurred within days.
Requesting deactivation of Dad’s pacemaker at this stage seems wrong given that he left no guidance. But when he dies, we will pick up where his instructions left off.
He will be cremated as per his wishes, though the pacemaker will have to be cut from his chest first because the devices can explode at high temperatures.
Dad’s ashes will be buried alongside Nora’s in a family plot in Saskatoon. He made his funeral plans a decade ago, thinking he would soon be there to join her.