The law dictated her mother die slowly – healthcare executive, Angie List, says enough is enough

Our world is loud. A cacophony of voices, opinions, debates, arguments and counter-arguments, now waged across more octaves and prolific decibels than ever. With the advent of the digital age, no longer does news and fresh kindling need to wait for physical print. More so, with the latest twist of tech, it doesn’t even need to wait for a human. But there are some matters that deserve quiet, a sheltered thoughtfulness for the mind, and what countless civilisations have called, the soul, to weigh what is before it. Death, across the millennia of human existence has persisted in being a matter that gives pause, in its finality, in its equality. Hem’s Law, a petition to alter Australia’s existing guardianship legislation, to permit a family member or legal representative to choose what is described as “a merciful and humane death” is one such matter. Hem was Helen, Angie List’s treasured and beloved mother. List, a strategic health technology leader with decades of experience, knows the professional; she has worked widely in healthcare systems, government and private health organisations across international borders. Now she steps into Australia’s legal process of death, after it careened into her family’s personal process of life.

Having an unobstructed view, to her mother, Hem, approaching death in late-stage dementia, whose body struggled a further ten days without food or water before dying, List asks for change. To those with or without MBAs, those in the privilege of policy crafting, to those without, to those as professionals in aged and healthcare and those outside, she shares a matter worthy of quiet and thoughtful wrestling, by executives, by clinical staff, but mostly by human-beings that share the unavoidable, that of meeting death one day. Hem’s Law asks that before a decision is determined, before a position is perfected or opinion entrenched, to sit in Hem’s story, and to weigh, is this the Australian standard and policy of care and death you would have for yourself, for those you cherish?

Vibrantly alive

Helen, or Hem, lived exuberantly. Hem, a name she invented for her grandkids because ‘grandma’ didn’t quite cut the mustard. You can picture List, her daughter, counting off her fingers to make sure she doesn’t forget anything, “she was president of the P&C, the local Cerebral Palsy Council, secretary of the local pony club, she wrote in the local newspaper, she authored my dad’s biography”.

“She went back to education as a 60-year-old to get her diploma in children services, so she could keep working with kids. She was just the most extraordinary woman, the most capable and generous woman I’ve ever come across in my life.”

In her living Hem gave, “she gave to her local community, she organised fundraising balls for the local hospital, seeing her organise and do, she didn’t just say, ‘this isn’t right and we need to help’ and ‘these people need help’. She got in and did that.”

Hem’s way was, “’if something needs to happen, you make it happen’”, List recalls. “In fact, even out of my childhood, just witnessing her ability to make things happen [was a marvel]. For the fundraising ball for the P&C, for example, she managed to convince the Pan Pacific Ballroom dancing champions to visit our town. A town of about 900 people in the middle of western New South Wales.”

“You can bet your bottom dollar that everyone bought tickets to that ball.”

List saw Hem face things as they were, she didn’t pick and choose what she cared about, even if it was hard or uncomfortable, she would show up because it was right, “she would always answer the minute that she heard someone was struggling with something, maybe they were unwell or something happened. She would be on their doorstep with something to eat.”

Lip-service wasn’t in Hem’s wheel-house, your substance was in what you did, “she wouldn’t just offer to help, she would literally turn up on the doorstep with enough home cooked food to get them through that week.”

“It wasn’t something that she pretended to do or spoke about doing. She was constitutionally oriented towards the needs of others.”

Echoing the mentorship that countless aged and healthcare staff have treasured throughout decades’ long careers, Hem cared and fostered young professionals coming up in their careers, “when she was working at the childcare center and working with obviously much younger people that may have just been starting out of their career, one of her colleagues was moving out of home for the first time. Mum put together a handmade book of basic recipes that you need to know when you leave home.”

“[The recipe book contained] How to do spaghetti bolognaise, how to do a simple tomato sauce. How did you do the things that you need, and you’re not necessarily going to pick up a [complex] Donna Hay recipe book and find some of those basic things”, List shares, “and mom just put this together. ‘This is the stuff that you need to know’. ‘These are the basics’”.

“That was the kind of thought that she put into those things.”

Leadership substance

As List has navigated her career in healthcare as a leader, she looks back to how integral Hem was in shaping the foundation of how she saw leadership, “there is no way I would be the person I am today, with the moral integrity in my leadership approach today [without Hem].”

Far from the textbooks of clean-cut and starched collars, List describes leadership in the messy and very close to home, “it was just a relentless decline [Hem’s decline], managing that while being a parent, one of the sandwich generation, while also trying to be a leader…” And yet, “[Her influence] absolutely shapes how I approach leadership, how I view what’s right and, and ensuring that the human element of that shines through.”

As health and aged care have consistently been rocked by change, and tumultuous at that, List sees that being alongside Hem as she was passing away, the depth of leadership Hem inspired was brought into sharp focus, “her influence on my character tends to everything, to be that person, her type of person.”

“[That leadership] it just does not shy away from hard conversations. To just not walk away when I see the wrong thing. And I see injustice happening. Absolutely, that is her living through me.”

Unprepared

Part of Hem’s way through life was to face what was before her, to not divert away from problems, in their trickiness or how hard they would be to talk through. List has, with her leadership, with her decades of experience, stepped forward to bear witness that she and her family were blindsided about the dying process for Hem, what the legality of Australia’s care laws dictated for her, for her family.

When it came to being prepared, “I don’t know how anyone could be. No, absolutely not. And I think this is part of the thing that has got me so angry and passionate about making a difference”, she shares.

“The end of dementia is spoken about in clinical terms, in the clinical literature. The most common form or reason people die at end stage dementia is the term called Cachexia and dehydration.” List names what she saw Hem experience, “it literally is starvation. It’s wasting away. But it’s hidden from the public discourse, I think, because it’s a traumatic thing.”

“We fundamentally are not preparing families for what this is like.”

List is a professional, she has worked in healthcare for over 15 years, she was and is well-read but being by a bedside sharpened the words of a clinical textbook, the playing out of clinical terms morphing into the inexplicable not a meter away from her.

“For a natural death where the body starts winding down, yes, they might lose their appetite, yes, they might slow down. That is fundamentally different from being forced to withhold food and water from your mother. Because they can’t swallow and you’re told that if you continue to feed her, she would choke. So we withheld food. We made the decision to no longer put food in her mouth, even though she still wanted to eat. And that is fundamentally different. And people are not being prepared for that reality.”

Hem’s Law is about changing the opportunity of those who already have the power to make healthcare decisions, to allow for mercy and humanity, it is also about preparation.

After launching Hem’s Law petition, List shares, “the overwhelming majority are, ‘this happened to me’. ‘My mother took 18 days to die’. ‘I watched my father go through this’.”

“It’s happening and yet we’re not talking about it. Why are we not educating families that this is what to expect? And why is it that the self-proclaimed advocacy for 446,000 Australians with dementia do not give real education to people in their dementia education?”

Policy from the reality of australians

List is boldly transparent to startle with intent. The reality of thousands of Australians warrants a depth of assessment and change from all of Australia, from its top policymakers, to wider society sentiment on the standard of care they will accept. She shares that the whole process for her family was fraught with confusion, frantic googling and desperately trying to find guardrails in the horror unfolding before her as her mother’s body was shutting down, slowly.

“[How long she lasted, professionals] they couldn’t understand. ‘I’m sure she’s not far off now’, ‘I’m sure she’s not far off now.’ This is, this is the process, right? And so here I am googling how long can someone survive without food and water? When I first googled it, it was two to seven days, and it was the short period. The two was without food, without water. If you Google how, how long can a human survive without water, it’s two to three days, right? So here it is day seven. And I’m lost, how is she still alive?”

The internal wrestling about what should be law, about what we will accept as legal guardrails for care must have at its centre the stories of the utter reality of what people have experienced. This is List’s plea, this is how she has put forward the argument for Hem’s Law.

She remembers, “I was counting, it was maybe six breaths a minute. I was googling how, what does this mean? How long, how much longer before she stops breathing all together?”

“I was desperately looking for answers to understand how on earth this is okay, is this normal? I was confused about her pain, understanding signs of pain because she was in pain. I know she was, because if we did try and move her then she would grimace.”

This was List’s routine for ten days, “I couldn’t stop googling to try and understand, how could this happen?”

Within parliament, within the decision on whether Hem’s Law must progress, List’s witness, and the hundreds of stories untold like hers must have its stark and unapologetic place in change.

“It was absolute devastation and I was sobbing into her pillow, apologising, saying ‘I’m so sorry’ and then asking her to let go because it was just awful.”

Challenging from experience

List is clear, she challenges the theory from observation, “the absence of an observable sign is not the absence of pain. A dying person cannot tell us whether they’re in pain or not. And yet we are making these assumptions about what, how much comfort care is actually doing.”

“It was just the most awful experience for me, for her husband. You know, dad, he turned 92 recently. He had to sit there and watch his wife for 53 years starve in front of him. [The experience] is profoundly traumatic for the people left behind.”

List notes, “I see some people saying that the dying person doesn’t feel it, which I’ve just said is not true and not provable. There is no evidence. Then there is some clear evidence for the contrary.”

These are terrible and hard conversations, List acknowledges this and highlights that is exactly why they need to be had, with all Australians, “if palliative care specialists agree that we can drug someone into a state of unconsciousness and they can’t feel anything, then why are we still putting the families left behind through such a traumatic experience?”

She asks, “we can’t know for certain that they’re still not suffering as the individual, it’s very likely there is still suffering for so many people. And how is that an acceptable position we take in society?”

“With animals, with what happened to mum, I probably would have gotten a jail term for neglect.”

List’s experience was abject confusion with terribly high stakes, how much pain was her mother in? How much guilt could she handle with having her hands tied by the law to not stop it? “I was constantly trying to understand, what’s the end point, how do we get to that point?”

Vulnerability for change

List has stepped into profound openness, in sharing the acutely vulnerable and personal, because she witnessed what she cannot stomach happening again.

“Her body had literally stopped blood circulating to her extremities and was still trying to keep her body alive. Now that is not a person going gently into the night. No, that is not someone withdrawing from life. That is a body fighting with every fiber it has to stay alive. It is, it is just inexcusable that we allowed the body to do that because the brain failed it.”

List sits Hem’s Law and the change that needs to happen, “that’s what this is. It’s a neurological disease that is forcing so many Australians [to reach] the end of life with their brain failing them before their body is ready to let go and their body is fighting for survival. We allow that to happen and we call it compassion.”

In policy change, List wants the uncomfortable truths to move pens, she wants the experience of everyday Australians to shape the legislation that says how they can love and cherish their special-ones at the end.

“She used to love me singing. I used to be a singer as well, and she used to love me singing. And I was singing to her and I was reading excerpts from her travel journals. And when I would talk her breathing would quicken. When I was singing in particular, her breathing would quicken. And then I stopped singing and her breathing pace went down. I have no doubt she was hearing and her emotions were communicating to me that she was hearing, no doubt in my mind.”

List shares, “her cognition was still there, very much active, it was the brain body connection that was hurt.”

“That’s where it really lands, that she was feeling most likely every ounce of her body, struggling with lack of oxygen, lack of water. Would you say it’s a form of torture that her body was going through? Deny the physiological process of the body, drying out of the organs shutting down. There is zero chance that that is not painful.”

Hem’s Law looks directly into the inexplicable of this and says we can do better.

Petition clarity

List is clear on what Hem’s Law is. It is not voluntary assisted dying. It is an extension of the existing, an extending of guardianship provisions and possibilities. Within Hem’s Law, the active point of death is a vitally crucial step, verified by multiple professional and legal assessors.

“[The active point of death is a vital step] A team of professionals is confirming death is now going to be the only option. When you lose the ability to swallow the choices are artificial feeding, which is recognised globally by every major medical body that artificial feeding at this point does not prolong life and actually causes potentially more harm than good. Your choice is when to stop feeding and giving water. This is what I’m framing this around, this is not voluntary assisted dying.”

The argument sits within the already established, “this sits in the same framework of guardianship legislation. We already allow a legal guardian the right to make the decision to withhold food and water from somebody at this point, thereby starting the process of death.”

She asks, “why are we not also giving that same guardian the right, if they have the right to make a decision if the end is already certain, particularly if they are having been appointed Enduring Guardian? If we are already giving them that decision, why are we not allowing them the decision, in that suffering, to ease it, rather than just sitting by and waiting for their body to consume itself?”

Humane

List casts her mind back to her upbringing, “growing up we lived on a horse farm, there were a number of occasions where we had to euthanise animals that were hurt beyond healing”. With clarity and conviction she shares, “I knew what her position was. ‘You know if that happened to me, I’d want mercy. I want you to go quickly.’”

For List, Hem, her family, “we would never let an animal suffer like this. We know when it’s time to do the right thing and when, for people, when their time is up, and I guarantee you, she would have been fighting for this. She would have said ‘you need to let me go.’”

“I’ve tried to make it so abundantly clear. This is not a quality-of-life decision. This is not about deciding that this person must die. It’s about how this person is going to die because they’re dying anyway.”

For List, it is integral that policymakers, that petition signers understand the crux of the petition’s foundations, “the death is proceeding. You know if you really truly respect the sanctity of human life and the dignity that people deserve when their life is ending, then Hem’s law, it should be enacted because it’s about really ensuring that people have a death that reflects what they would have wanted their life to be.”

In the greater societal discourse, List challenges and understands in one breath, “no one should get to this point. I understand why we have safeguards around voluntary assisted dying, it is important we have those safeguards.”

“When this clinical trigger [swallowing incapability] happens, I can guarantee you there isn’t a person on the planet who would choose starvation if they could, it’s not even possible to choose. You cannot force this clinical trigger. You cannot coerce someone to do this. It is the absolute pinnacle of dignity, extending dignity to a person by respecting the fact that when they’re about to die, literally within days or weeks, that we say that ‘we’re not going to manage your suffering, we’re going to end it.’”

The photo

List didn’t want to take the photo but she knew it would be important, “I didn’t have a petition in mind when I took the photo. I thought, ‘I don’t think people would believe me if they saw this.’”

She wrestled with making the photo of her mother the day before she died public, 24kg at the end of an unspeakable decline. And particularly an even more inexplicable ten days. She decided not only that she would share it but that it had its irrevocable place alongside Hem’s story, in substantiating what Hem’s Law aims to do, allows options, after comprehensive medical and legal checks, for mercy, for compassion, for humane care.

“It was a horrific experience and the ending was much more traumatic than it needed to be. And it strengthened my resolve that we need to have more conversations about this. I’m not going to stay silent on this.”

Once List shared Hem’s petition and photo, she experienced the community’s response, “there was a significant reaction to that post, when I think about that response over those few days after posting, what was powerful is that I realised, I’m not alone. And if somebody doesn’t open this conversation and do something about it, who will?”

Experiencing the standard

“This is the standard; You walk past the standard you accept. And I knew, I’m not accepting this anymore.”

List decided, and continues to decide, to leverage her professional experience, her leadership, her unwanted familiarity with utter confusion and horror to push for change, the change that is no other child desperately grasping for answers on a tech platform. “I’ve had people say to me that they went through similar. They have similar photos and they wish they had the strength to share them and they wish they could have done something, but it’s such a traumatic experience.”

She knew she had to step into action, “great grief without purpose is just sadness. This is enabling me to honour her memory and do something with my grief by not standing by and allowing this to continue, without saying, this is enough, this is not acceptable. We cannot continue to do this.”

“When I started looking for the research, how many people actually have these difficulties? How many people with dementia are likely to reach this endpoint? And that’s where these numbers came up and I thought, this is unbelievable. How is it that we are at this point?”

Parental care

List shares a moment of poignancy and respect that sits in the place of quiet wrestling, of conscience, a worthwhile and deeply human place that must have a place at the table when it comes to policy on death.

“Before I hit post the final thing that I did, she was cremated the following week, I went and stood by her coffin and I read her the wording of the health petition. I basically, in some ways, was getting her blessing, before I shared that photo. Then that’s when I said to her, to myself it has to stop. It has to stop.”

List says, “I don’t want to put my children through that, whether or not I end up with Alzheimer’s or dementia. There is no way and I don’t think there is a mother or father, I don’t think there is a parent on the planet who would ever want to traumatise their own children.”

“We are not granting these people their rights to care for their own children. And now I’ve been traumatised. There is zero chance that I would ever put my children through that, just sit at my bedside and see that happen to me. Why is that not being respected?”

For Leaders

Having been a leader that has weighed in with the appropriate corporate voice, on all the relevant platforms, List understands the place for measured leadership, she also challenges there is a place to enter into personal ground, “fundamentally dying is a part of living. This process approaching death is something that every single person on the planet experiences besides death. It is the only human experience that we will all go through. That is common across all of them. And being authentic and genuine and human is what I think makes somebody a great leader.”

“This is why I try to be so open and transparent about this, because there’s no point just speaking in corporate speak and trying to say the right words to motivate and inspire people when fundamentally we are humans that are going through a lot of experiences together.”

List shares, “my advice for leaders in this space is to live with your humanity and your human experience and let that shine through. We all might have differing experiences but they are all human experiences. And I think you will find that people will be drawn towards leaders that they feel there is a connection with.”

Beginning and ending with Hem

List has leveraged her professional skills to push for reform in Hem’s Law, and deeper still, she knows the stamina needed to land this change for fellow Australian’s lives, rights and access to humane options of care. To meet the growing unspeakable situations with those options as Dementia diagnosis and deaths proliferate.

You can imagine List’s face moving into a wry smile as she relives Hem’s sense of wit and pluck, “in terms of what she would be saying to me I can still hear her voice now. I know she would be saying some of her favorite sayings, ones I’ve long said”.

“‘It’s not the size of the dog in the fight, it’s the size of the fight in the dog.’”

 As to the campaign trail ahead of her and Hem’s Law, List says, “resilience is something that I have drawn on my entire life. Another saying that my grandmother had, which I love is, ‘people are like tea bags, you never know their strength until you put them in hot water’. So this is the kind of outlook on life that I have grown up around, you don’t give up, you continue.”

“I have no doubt that she will continue to be behind me. I appreciate this is not going to be an easy road. This is not something that’s going to come quickly. It is going to take persistence and pushing. I have her voice and some of her sayings on my lips. If I ever feel that things are getting difficult, that the road is long, I will have her strength of character that she instilled in me, not just through her words, but through her actions.”