Chamber and committees

I, too, thank Liam McArthur, from the bottom of my heart, for enabling and empowering us to debate a very important issue.

I clearly recall staring for a full five minutes last June at a message from my best friend as the world around me fell away. It was a message of four small words with mammoth implications: “She has called it.”

I had known Madame Bergeron from the age of 19. She was the epitome of a classy French chic woman—always immaculately turned out, slightly aloof and sarcastic, and oh so determined. She terrified me and awed me in equal measure. She had pioneering heart surgery when both her kids were still teenagers, and she lived her whole life disabled, yet she commanded every room that she ever entered. She was not always easy to live with, but she was loved fiercely by all those around her.

She had been living with terminal cancer for more than three years, and it had consumed her entire abdomen. That day in June, she had sat down heavily in her wheelchair and felt something burst inside her very distended stomach. At that moment, she knew that she would develop full-blown peritonitis and sepsis and would require all kinds of pain medications and sedation to try to manage her symptoms, in a hospital setting, before succumbing within the week.

That was, categorically, not the path that she wanted. She had lived with the very best of palliative care and, for most of those three years, the palliative effect of the ability to have an assisted death. She called that her security blanket. It had given her great comfort as she chose to live for as long as she could, with grace and courage.

She was anything but suicidal. A Catholic of strong faith in the Quebec Roman Catholic tradition, she said that she knew that her God was merciful and that she had the support of her priest and her community when she set in train the plans that would help her to leave this world on her terms, as she had lived her whole life.

Nathalie dropped everything to drive the three hours from Montreal to Shawinigan, where the family gathered for one last evening. There were tears and there were laughs—and, boy, were there commands. Madame Bergeron was conducting like a symphony master. She wanted everything to be just so. Nathalie recounted to me that she could not help but be frustrated at her mum’s painstaking choice over her final pyjamas and dressing gown, until she realised that her beloved maman was dying as she lived—elegant and oh so bossy.

The house was full on the afternoon that Nicole Bergeron died, peacefully dressed in white daisies. Her bed was surrounded by loved ones, who shared the most tender of moments. She was able to speak to each of them, and the words that she spoke to my best friend were the salve that has helped Nathalie to come to terms with her loss. Nathalie has also described her mother’s death as beautiful. Madame Bergeron, tu me manques énormément.

Please contrast Madame Bergeron’s passing with the way in which my mum, Irene, died, 12 years ago this week, after more than two weeks without food or water. She was surrounded by love, absolutely. She had also been assessed as having capacity and as making her choice free from coercion, but she did not have a peaceful death. She took the only legal option that was open to her under our current laws—and it was awful. I do not have the words to describe to members how awful it was, Presiding Officer. If you have not seen somebody starve to death, there are no words to describe it. She deserved better.

My decade at Scottish Women’s Aid taught me how real coercion can be, but it also taught me that the answer to risk is not to look away from difficult situations. I spent time training police officers, social workers and housing staff about coercive control before this place had even named it and recognised it. With the right skills, training and opportunity, it can be detected. To say otherwise is simply to walk away from a wicked issue.

Right now, behind closed doors across this country, women with terminal illnesses who are experiencing domestic abuse have no safeguards. The bill would help to bring that coercion into the light, to remove the power from abusive men and to return that agency to its rightful owner. That is what the bill is about—agency and autonomy. We must give our folk choice. It is, after all, the settled will of the majority of our constituents, including those who are disabled and those who have experienced domestic abuse, especially those who are terminally ill. They are forgotten in all these conversations. They are our most vulnerable citizens. Please vote yes for them.

20:56

I, too, thank Liam McArthur, from the bottom of my heart, for enabling and empowering us to debate a very important issue.

I clearly recall staring for a full five minutes last June at a message from my best friend as the world around me fell away. It was a message of four small words with mammoth implications: “She has called it.”

I had known Madame Bergeron from the age of 19. She was the epitome of a classy French chic woman—always immaculately turned out, slightly aloof and sarcastic, and oh so determined. She terrified me and awed me in equal measure. She had pioneering heart surgery when both her kids were still teenagers, and she lived her whole life disabled, yet she commanded every room that she ever entered. She was not always easy to live with, but she was loved fiercely by all those around her.

She had been living with terminal cancer for more than three years, and it had consumed her entire abdomen. That day in June, she had sat down heavily in her wheelchair and felt something burst inside her very distended stomach. At that moment, she knew that she would develop full-blown peritonitis and sepsis and would require all kinds of pain medications and sedation to try to manage her symptoms, in a hospital setting, before succumbing within the week.

That was, categorically, not the path that she wanted. She had lived with the very best of palliative care and, for most of those three years, the palliative effect of the ability to have an assisted death. She called that her security blanket. It had given her great comfort as she chose to live for as long as she could, with grace and courage.

She was anything but suicidal. A Catholic of strong faith in the Quebec Roman Catholic tradition, she said that she knew that her God was merciful and that she had the support of her priest and her community when she set in train the plans that would help her to leave this world on her terms, as she had lived her whole life.

Nathalie dropped everything to drive the three hours from Montreal to Shawinigan, where the family gathered for one last evening. There were tears and there were laughs—and, boy, were there commands. Madame Bergeron was conducting like a symphony master. She wanted everything to be just so. Nathalie recounted to me that she could not help but be frustrated at her mum’s painstaking choice over her final pyjamas and dressing gown, until she realised that her beloved maman was dying as she lived—elegant and oh so bossy.

The house was full on the afternoon that Nicole Bergeron died, peacefully dressed in white daisies. Her bed was surrounded by loved ones, who shared the most tender of moments. She was able to speak to each of them, and the words that she spoke to my best friend were the salve that has helped Nathalie to come to terms with her loss. Nathalie has also described her mother’s death as beautiful. Madame Bergeron, tu me manques énormément.

Please contrast Madame Bergeron’s passing with the way in which my mum, Irene, died, 12 years ago this week, after more than two weeks without food or water. She was surrounded by love, absolutely. She had also been assessed as having capacity and as making her choice free from coercion, but she did not have a peaceful death. She took the only legal option that was open to her under our current laws—and it was awful. I do not have the words to describe to members how awful it was, Presiding Officer. If you have not seen somebody starve to death, there are no words to describe it. She deserved better.

My decade at Scottish Women’s Aid taught me how real coercion can be, but it also taught me that the answer to risk is not to look away from difficult situations. I spent time training police officers, social workers and housing staff about coercive control before this place had even named it and recognised it. With the right skills, training and opportunity, it can be detected. To say otherwise is simply to walk away from a wicked issue.

Right now, behind closed doors across this country, women with terminal illnesses who are experiencing domestic abuse have no safeguards. The bill would help to bring that coercion into the light, to remove the power from abusive men and to return that agency to its rightful owner. That is what the bill is about—agency and autonomy. We must give our folk choice. It is, after all, the settled will of the majority of our constituents, including those who are disabled and those who have experienced domestic abuse, especially those who are terminally ill. They are forgotten in all these conversations. They are our most vulnerable citizens. Please vote yes for them.

20:56

I wonder whether Public Health Scotland would be able to use the data that we already have access to with regard to people who are ranked 1 on the Scottish index of multiple deprivation and so on as some type of indicator that could address the issues that Bob Doris raises.

I find that turn of phrase to be particularly distasteful. Will Sue Webber reflect on that, and will she think about whether my mother’s death, which was legal under the current law and took two weeks in which she starved to death, was a “Disney death”?

To flesh out the issue, if we are looking at statistical significance and the prevalence of disease, we should not lose sight of what the primary cause of death would have been, which is the underlying condition. Mr McArthur’s amendment 46 would allow assisted dying to be put alongside the primary cause of death, but for medical purposes it is important that we understand the prevalence of disease across the population.

Would the member accept that the way that the system currently works means that conversations with people who are terminally ill are indeed happening? I have spoken on the record about my mum, and there are many others like her. They have conversations with doctors about voluntarily stopping eating and drinking, about medication that might have a double effect and might hasten or bring about death, or about withdrawing treatments in a way that will bring about their death. People are having those conversations with trusted doctors across the country at the moment.

In the light of the concerns that have been expressed by young people and their families that those with co-occurring neurodivergence, or those who are living with the less-understood eating disorder known as avoidant restrictive food intake disorder—ARFID—do not always get the support that they need at Skye house, how can the Scottish Government support the delivery of services in a way that is grounded in inclusive and trauma-informed practice and reflects the needs of those who are neurodivergent?

When resources are definitely tighter, the fact that we will not see the benefits until perhaps a decade later makes the argument difficult.

Paul Johnston said something earlier about zooming out and looking at what national Government, local government and our partners more widely can do versus putting all the onus on the individual. I think that that often ends up being our default position—we will just eat better, or just do this or just do that. However, we understand about food deserts and all of the issues that surround poverty and inequality. How do we ensure that that is where we keep our focus?

Maybe we should be looking at the Marmot principles and the Christie principles together when we make any decisions across all public services. Thank you.

Paul Johnston, you have already touched on the theme that I will cover, which concerns the ways in which persistent health inequalities can stall life expectancy. In addition to that, we know that people in Scotland’s poorest neighbourhoods are almost five times more likely to die from preventable conditions compared with those in the least deprived, and that, as you have alluded to, they live for 25 fewer years in good health, which has a huge impact on overall wellbeing.

You have touched on a couple of the drivers, but what are the key factors behind stalling life expectancy? I found a wee glimmer of hope in the latest figures that we have seen, but what factors are driving widening health inequalities in Scotland?