As legislative reform around voluntary assisted dying continues across the country, one woman recalls the complex issues that arose when her younger sister grew tired of life.
‘I want to go now’: why my witty, charming sister wanted to die
MY SISTER Lisa moved into a hospice by Lake Burley Griffin in August 2018, the week after a ferociously determined Scott Morrison prevailed in a leadership spill to become the 30th prime minister of Australia.
Lisa displayed a determination of a very different kind from the freshly minted PM on the other side of the lake. She was holding on to life by a thread, suffering the devastating long-term effects of anorexia nervosa.
Decades of malnutrition had compromised Lisa’s vital organs and she had developed a chest infection that was slowly robbing her of breath. We’d been here many times before over the years, nursing Lisa back to health with antibiotics and refeeding. This time, however , she refused all life-saving interventions. She wanted to be released from the torment of food. She wanted to die.
Anorexia has the highest mortality rate of any psychiatric illness. For those who survive the illness, the prognosis is poor. Treatment has not progressed much in the past 50 years, particularly for older sufferers like Lisa. Her losing battle with anorexia came as debate swirled around voluntary assisted dying (VAD), which was legalised in Victoria in 2017, Western Australia in 2019 and three months ago in Tasmania. In March this year, the ACT and the Northern Territory called on the federal government to restore their right to introduce voluntary euthanasia laws. It is expected that VAD legislation will be debated in the NSW Parliament this year; the South Australian parliament is now considering a VAD bill. To be clear, even in the absence of VAD legislation, a person is not obliged to consent to medical treatment – even if it means they will almost certainly die. This protects a person’s right to refuse treatment, including food and hydration.
The clearer legal position on VAD is a counterpoint to the emotions that flooded through my family back in 2018. We were troubled over whether our acquiescing to Lisa’s clear intention to die amounted to assisted suicide. We wanted her to die a brave death, not one that derived from despair. A WA parliamentary report discussed the “tired of life” category and asked whether people who are “tired of living” should be offered medical assistance to die, even if they are healthy. Lisa was “tired of life” , tired of her long battle with mental and physical illness. She was clearly not healthy and had made a considered choice that she wanted to die. But no one wants a loved one to die. Could we have done more? That, though, would have subverted her wishes and her dignity. Lisa was now in control, as she had wanted to be for the last 40 years. We owed her that much.
The experience with my sister has taught me that the lines between life and death, physical and mental health, volition and incapacity, autonomy and connectedness are often messy and painful. But in choosing the time of dying, we must not abandon the fight to solve the harrowing problems that confront the living.
Anorexia is classified as a mental illness, but throughout the long, terribly sad saga with Lisa, I believed she was of sound mind, that she was fully capable of making her own life and death choices. That’s not to say complex questions don’t arise when anorexia is in play. There is an assumption, as stated by doctors at the time of Lisa’s treatment in 2017-18 , that a person lacks the capacity to make decisions about treatment if their BMI is lower than 15-17 . Lisa’s BMI was 10, about the point where humans die of starvation. Many doctors doubt that adults are capable of rational decisions about treatment when their BMI is so low.
For a long time, I did not accept Lisa’s choices. I did not want her to die. Lisa was my dearest friend, and when I finally accepted that she wanted to die, it was with tremendous sorrow – and plenty of introspection.
Lisa grew up the third of four kids in a housing commission house at Berkeley, on the fibro frontier of Wollongong in the 1960s. First, there was an older brother, Steve, then me, then Lisa. Three kids in not much more than three years. A younger brother, Dom, came along later. In a family of brunettes, Lisa’s flamboyant red hair always caused ripples. When Mum first saw that hair, she thought there had been a mix-up in the maternity ward.
Dad was a clerk at the steelworks: called a “pencilpusher ” in a town that prided itself on manual labour. Mum kept the cleanest and tidiest house in Berkeley, then went back to work as a telephonist when Dom went to school. In my family, the boys were rascals but popular. The girls were conscientious and bookish, but Lisa’s breezy way of engaging ensured friendships and happiness for both of us.
Lisa was my bestie and we played in the yard with our various dogs and the kids from the migrant hostel up the street. We staged imaginary Hollywood musicals on the concrete path leading up to the backyard dunny. Each blade of grass was a fan. We played starlets chosen from Mum’s glossy movie books. Even before political correctness, our choice of starlets was inclusive, non-hierarchical and would always incorporate a redhead. You’ve probably forgotten the redheaded actor Sally Forrest and singing and dancing entertainers the Kessler twins. They were huge for about 18 months. We adored them.
True, I pulled rank when we were choosing which Beatle to be in love with. I bagsed Paul because he was the handsome one. Lisa carefully allocated the Beatles between us and the girls up the street. She had John.
When she was about 14, Lisa’s behaviour began to change. She became guarded about food and began dieting. She had put on some weight, but wasn’t chubby. We were sure something had been said in the schoolyard. Girls were teased relentlessly in Berkeley and I’d copped it, too. We quizzed her but she wouldn’t say. She deflected: Don’t complain , just get on with it. But her relationship with food became more insidious – she divided up small portions of cakes to eat over the next few days, purging after eating. This ritualised behaviour later turned into obsessive, self-imposed rules. Her weight dropped dramatically. She became thin and remained thin; too thin and people noticed.
It wasn’t long before she was diagnosed with anorexia. It was the early ’70s and Lisa was still in her mid-teens . We didn’t understand it. It would be 10 years before singer Karen Carpenter’s death sparked a public conversation about anorexia and body dysmorphia. We still don’t know why it arrived and why it never went away. Looking back, I can see undercurrents of anxiety in the family and noticed the precision in my mother’s demeanour, but overwhelmingly our focus was on Lisa’s survival and trying to convince her to eat.
My parents bore the brunt of my sister’s battle with anorexia through decades of failed treatments, including hospitalisation for extended periods – so many times that I lost count. I’m still acutely aware of the parent pain they suffered over the years. They worried about her continually and updated me via letters and phone calls after I’d left home. “Can you believe that they weighed Lisa today and she was only 32 kilos?” wrote my mother in her meticulous, elegant hand in the late ’70s. “What can we do?”
Nevertheless, there was also lots of joy: her breezy ways led to the school captaincy at Berkeley High and she became a vivacious, elegant woman who was easily spotted by her striking mane of red hair. After she moved to Canberra in the mid- ’80s, she enjoyed a successful career as a public servant, including time in minister Ros Kelly’s office (pre-whiteboard ), travel, a marriage with a kind man that didn’t last forever and many good friends. She wanted to have children, but her health negated the motherhood option. She was a dedicated and loving aunt, frequently subbing in to care for my kids after I moved with my family to Canberra from Sydney in the early 1990s.
After her divorce in 2008, Lisa lived alone and for years seemed to survive on a square of chocolate and a glass of wine for dinner, with the occasional small tub of yoghurt for lunch. But after our parents died within months of one another in 2016, she lost her moorings, and the rules associated with her eating became more entrenched. Now, the mere mention of regular meals was abhorrent to her, and she was incapable of watching others eat. For many years she had had a no-breakfast rule, but now any food before lunchtime made her panic.
Early in 2017, she retreated to her townhouse in Hawker in Canberra and stopped eating altogether. Thus began the final cycles of hospital admissions with complex negotiations for refeeding via a nasogastric tube to achieve a healthy enough weight for discharge, her cessation of eating and later readmission. The cycle was repeated several times. Each hospital discharge gave us hope, but each readmission brought despair.
Lisa’s health deteriorated. Clumps of her hair began falling out. She developed a mysterious, debilitating pain in her abdomen that needed diagnosis and treatment, but the mystery was never solved. In early 2018 at age 59, on one admission to hospital , she was weighed in the emergency room, and the large digital scales displayed 29 kilograms. Given she was 170 centimetres tall, this was very skinny. Everybody looked over at the display and her thinness, carefully avoiding my gaze. Lisa stored this figure in her memory and later mentioned it with a degree of pride.
With each subsequent hospital admission , the refeeding issue grew more pressing. Refeeding syndrome is a serious complication that occurs when a patient , who has been starved, begins to eat. As the body shifts from a catabolic state (in which tissues are broken down for nutrients) to an anabolic state (in which tissues are growing), it transfers salts from the blood to the growing cells. Low levels of salts may lead to complications such as heart failure and even death.
Refeeding was always the priority, because dealing with the mysterious pain was hazardous under a certain BMI. That, in turn, complicated the management of her anorexia. To some extent it was all moot because programs are focused on teenagers, when anorexia is most likely to first present and treatment is most likely to work. Lisa had been living with anorexia for more than 40 years.
During her hospital stays the psychiatrists did their best, but there was always a disjunction between Lisa’s physical and mental condition. The treatment for her physical condition presented challenges that were carefully monitored and resolved in the short term, but the treatment of her mental state presented a vast, unresolvable void.
Lisa had always been strong-willed , if not bloodyminded . In the early days of the refeeding sagas in 2017, she challenged doctors, psychiatrists, nurses and dietitians in terms of how much she would eat and when, and whether the suggested protocol contravened her rules.
Through all this, we remained besties and she spoke with remarkable frankness and clarity about anorexia. She had been involved in campaigns and spoken to kids at schools about eating disorders. The problem was her volition. She understood that her food “rules” were life- threatening, but they overpowered her. Sometimes a newbie dietitian would ask, “Why doesn’t she just eat?” What could I say after so many years?
All the while, Lisa became more frail, and eventually needed a walker to move around. Negotiating steps became increasingly difficult. In 2018, after many months of refeeding, she weighed 34 kilograms when she returned from hospital to her townhouse with its two internal steps. I’d been sceptical about her managing to navigate around it, but we went there with an occupational therapist full of hope and optimism about her new life. She managed to tackle the steps slowly that day, but did have several falls afterwards.
We had a novel plan for eating – bolus feeding. She was to have a tube placed into her stomach, into which she’d administer formula. It involved a small surgical procedure that would be done in a couple of weeks.
In those weeks, without my knowledge, she cancelled the procedure because “the rules” would not allow her to administer the bolus feed. She stopped eating completely and retreated, telling me that she wanted to “disappear” . We argued about this. Her friends told me later that she’d had plans to “disappear” for some time, but the main obstacle was me. Within a fortnight, she was readmitted to hospital by ambulance, suffering from pneumonia and dehydration.
It wasn’t until the week of the Turnbull Liberal Party leadership vote that I knew death was on the cards. The kind doctor who’d been caring for her mentioned the “P” word to me – palliative care. Although Lisa had previously agreed to refeeding, she would no longer cooperate. He could not force-feed her.
“My body is giving up; my organs are failing. I want to go now,” she told me. She was calm, but firm. This was unfathomable to me. I sat quietly at her bedside for a moment, then looked around at the other three beds in the hospital ward, all full, all accompanied by visitors, wondering if our conversation would be overheard. I told her that we didn’t want her to die. “Please try again, for us,” I said. The “us” were my two brothers, our children, our partners and a closeknit group of her friends who knew and loved her well.
During what we called the “rallying week” , my two brothers and I besieged her with visits, telephone calls and text messages, asking her to try again – to live. Lisa acquiesced, agreeing to the nasogastric tube again and talking about housing arrangements.
It was complicated. At age 60, she was too young to qualify for an aged-care assessment, too independent to live with us, too frail to live independently. The best we could hope for was supported accommodation, but we knew she would still not eat; that she would sit at the tables in dining rooms and move food around her plate, just as she had done decades before when she hosted dinner parties, never eating a morsel.
I visited her on the weekend at the end of that rallying week, and we spoke about the open day at the university where I worked, and the hopes and expectations about this new phase of life for students and parents. I spoke to the kind doctor about our plans to rehouse her and our expectations for her. In retrospect, this was a foolish conversation, because Lisa had already declined treatment and the doctor knew this, but was too polite to dash my hopes.
On Monday, the psychiatrist called me: “Lisa wants to die and it’s important for you to recognise this,” she said. “She’s holding out because she doesn’t want to disappoint you. You have to let her go.” The psychiatrist arranged for a meeting the following day with the palliative care team, where they emphasised again that I had to let her go. I walked around to Lisa’s hospital room where she was curled up on her bed, with the nasogastric tube perfectly in place.
“I want to take out this tube and I want to go,” she said. I said I would let her go. I walked out to the nurses’ station and said I would not intervene if the tube was removed. “I’m relieved,” said the nurse. Since September 2017, Lisa had spent seven months in hospital on the refeeding project.
The next day, she was transferred to the palliative care hospice. Her mood was upbeat. The doctors told us this is a common reaction when people understand that death is imminent: they can surrender to its inevitability and relinquish the struggle to live. Relieved there would be no more conversations about food, Lisa held court in a witty and charming manner to the assembled family and friends. We reminisced and took notes to ensure we had all the details needed for the funeral. Her memory had always been very sharp, and she wanted things to be just right.
The hospice was a warm and caring place, set in a scenic lakeside location with abundant wildlife. There was no awkwardness in the family room, with its muted TV and the ping of the microwave . Occasionally, there would be a breakthrough of sobbing and offers of solace from strangers, but there was no embarrassment about grief.
Lisa received the best palliative care imaginable, underpinned by a remarkable roster of volunteers who seamlessly moved through friends and family, giving comfort and help. Nothing was a trouble: they served breakfast for visitors, offered a glass of wine at sunset and sat with patients who were dying but had no one to comfort them. It was very Canberra beyond-the-bubble – community-driven , organised, compassionate. I was so grateful for it.
The clinicians explained things thoroughly to us – how Lisa would die, how long it was likely to take, what to expect, whether she would be agitated or in pain, how medication would alleviate any suffering. They explained that the chest infection was taking hold, that her vital organs were very weak, and that death would occur by the cascading effect of organ failure.
Lisa lapsed into unconsciousness on the eighth day after she refused feeding and died two days later, on September 8, 2018, from complications due to pneumonia . I was devastated.
Lisa was an anorexic, but it did not define her. She passed bravely with lots of laughing and even played dead a couple of times. “Just razzing,” she’d say. Following a family tradition, we got into trouble for being too rowdy in the family room of the hospice. She was proud of that.
We looked at Mum’s movie books and pondered some Beatles memorabilia. She said, “In the end I was right. John Lennon was the poet.”
Butterfly Foundation National Helpline for eating disorders: 1800 33 4673; Lifeline 13 11 14.
This article is from the June 26 issue of The Age Digital Edition. To subscribe, visit “https://www.theage.com.au”.
DETERMINED TO DIE
BY Peta Spender | smh.com.au