Gaynor French wants to die wearing her Christmas socks and trainers, with Depeche Mode playing on the sound system and her husband and children by her side.
Diagnosed with terminal cancer in her 40s, she believes her final wishes, however quirky, should be honoured. But the chances of that deathbed are slim.
“I know the kind of death I am going to have and I have two options. The first is I bear the pain, so I can be lucid to the end.
“Or, I can take the pain relief and become the opposite of lucid, whatever that is. Confused? Not knowing who I am? I don’t know and that frightens me more than the prospect of pain.”
To die the way she wants would require a change in the law, maybe even a referendum, to allow for voluntary assisted dying (VAD) — the choice to take a prescribed, life-ending medication in the final months of an incurable illness.
Gaynor is under no illusions. “We are nowhere near ready for a referendum,” she says. But what she hopes society is ready for is a conversation that might, eventually, lead to the legalisation of VAD.
And “gobby” Gaynor, as she describes herself, feels she is the person to start the talk.
But Gaynor is not planning her own suicide, nor is she seeking anyone to assist her. Despite the availability of the knowhow and drugs from online sources, it is the last thing on her mind.
“We had to have the dog put down last year and it nearly destroyed us. It’s a huge responsibility and I would not put it on my family. I would not even suggest it,” she says.
“I will never commit suicide, because that is not what this is about. All I want to do is start the conversation about VAD. I want people to be able to talk about this without abuse, without nastiness. I want a mature conversation.”
Her experience suggests that even a debate is a step too far for some people. Since starting a blog and a Facebook page, under the Dying With Dignity Ireland title, her inbox has rarely been empty and the contributions have not always been constructive.
She has been compared to an abortionist and a Nazi death camp commander.
“I stay the grown-up and I reply with a dignified response, but it’s hard sometimes. I did block one person, but only because he was upsetting other people following me. I don’t want to block people, because I respect other people’s views. I’m just asking for the same respect, in return.”
Six years ago, at the age of 41 and with the youngest of her three children aged just 10, Gaynor found a lump in her breast.
“You’re told, ‘don’t worry, it could be just a cyst’, but I studied biology and life sciences and I knew,” she says.
She knew, but she didn’t panic. The lump was small and manageable, surgery was successful, and the chemotherapy and radiology were precautionary.
“They did everything right,” she says of her medical team. “We had every reason to be optimistic. And then, six months away from the five-year mark, where I was to get the all-clear, I felt tired and I knew something was up.”
This cancer hadn’t followed the rules and it had sneaked its way into her liver and her bones.
She was given six months to live.
A new cancer drug, Ibrance, hailed as a breakthrough when it was released in the United States in 2015 but not yet funded by the HSE, is being prescribed to her and to a small number of other women in Ireland, on compassionate grounds, and it has pushed those six months to more than a year.
How much longer it can give her, nbody can say for sure. Gaynor has scans every 12 weeks and the last one showed only slight tumour growth, so progression of her cancer has certainly slowed, but it hasn’t halted.
But it hasn’t stalled her appetite for living, either. Even on a damp, cold day at her rural Co Roscommon home, she delights in the ever-changing countryside around her and is endlessly amused by the madness created by the family’s four dogs and curmudgeonly goose.
The family moved here from England 10 years ago, full of dreams for a fresh start in life with clean air, green grass, and polytunnels. Gaynor is from Manchester but both her and and her husband Steve’s roots are in Ireland.
Gaynor’s upbringing was difficult and she became a mum at 18, in the midst of a troubled relationship. Undaunted, she enrolled in college as a mature student, and began working in education — in A-level colleges, on early school-leaver schemes, and in prisons.
She broke free from the relationship and was happily single when Steve appeared. She got stuck with him in a bar because her friend fancied his friend, but when he told her he had two Jaguars, she couldn’t resist agreeing to visit him.
Steve and Gaynor married and thrived.
Steve restores cars for a living, although he hasn’t taken on many projects in the past year, not since Gaynor’s increasingly full calendar of medical appointments took over.
One of the projects awaiting his attention in the garage is a classic hearse.
Gaynor can’t help but laugh at the irony of the rather prescient purchase, but, no, she’s not expecting to be its next passenger.
“I’ve already made my funeral arrangements,” she says.
“I don’t want my family having to do all that. When I was told it was terminal, the next day, I booked my funeral and then I wrote my will. It wasn’t morbid, although it was a bit strange, looking at the coffin and thinking, ‘I’ll be in there’.”
She also created memory boxes for her children, filling them with photographs, favourite books, and toys from their childhood, pieces of her jewellery, and letters to be read after she’s gone.
She created a children’s character, Holmsey Hare, and has had a book of his adventures published as a legacy for her adored three-year-old granddaughter.
She compiled a bucket list of things she wants to accomplish. She started learning piano, she took a spin on a motorbike, she rode a carnival big wheel and she “got arrested” (with the co-operation of her local guards and some rather fanciful charges).
She even got to throw her underwear at a Depeche Mode concert in Dublin. They were clean — still in the wrapper — she hastens to add. The biologist in her doesn’t carelessly spread germs.
And she didn’t actually throw them, but handed them to a nice roadie, who obligingly placed them on stage, where no-one would slip on them. The sensible mum in her fully approved.
Now, she’d just like to be able to arrange her death. Gaynor says she didn’t have to think about VAD — it was her natural instinct to gravitate towards the idea. “I grew up in 1980s Manchester,” she explains with an expression that implies, ‘we’re realists, we don’t sugarcoat things’.
She doesn’t doubt that her palliative care team will do all they can to keep her comfortable. She can’t speak highly enough of the Mayo Roscommon Hospice services and has fundraised for them.
But they don’t actually have a hospice yet, so end-of-life care must take place in hospital or at home. Gaynor doesn’t want to die in hospital. “I’ve witnessed death in hospital and it was not death with dignity. The nurses did their best, but hospitals are not set up to cater for death,” she says.
But she isn’t satisfied that it would be fair or feasible to expect her family to handle it at home, even with support.
“I know my palliative care team and trust them. Although I cried when I was referred to them, because, to me, they were the people who came in the last week and watched the clock counting down.
“I know now that’s not the case. They’ve been fantastic to me and I know they’ll treat me the best they can. But they also know my views on VAD and they don’t try to change my mind. I think a lot of medical professionals agree with me, or at least agree we should be having the conversation,” Gaynor says.
The conversation begins with Gaynor’s challenge to the arguments most often used to oppose VAD.
“People will say it’s suicide and we’re all trying to stop suicide, but it’s not suicide, if we’re already dying. It’s not us killing ourselves — it’s the disease,” she says.
“People say we should go only when God says it’s our time to go, but if that is so, should we be taking chemo at all?
“Should we take heart pills, and all the other medication people are on every day to keep them alive? If their body is no longer working without medication, isn’t that God’s way of saying ‘your time’s up’, and yet we fight against that every day. It’s hypocrisy.
“The biggest fear is that there will be a slippery slope,” she says, referring to the contention that if assisted dying is legalised, people who are borderline cases or who are chronically rather than terminally ill, will avail of it and then people will be coerced into it, because they cost too much to keep alive or they don’t want to be a burden on their family or they’re made to feel they’re a burden.
“But where VAD is already legal, that has not happened,” she says, arguing the exact opposite — that there are greater safeguards against coercion, where VAD is legal than there are where it isn’t.
“It would be naive to believe assisted dying is not already taking place in Ireland. People save up their pain medication, their opiates, and take them all in one go. People are afraid to talk about it, but they have told me this is what they will do. When people are already far gone and under the care of a medical team, there is unlikely to be a post-mortem, so no-one will know. Except we do know — it’s a dirty secret,” Gaynor says.
“Because it’s a dirty secret, who’s to say that person who takes an overdose hasn’t had their medication saved up for them and been encouraged to take it by someone else? Death is more likely to be coerced, because there is no legal watch-body or proper procedures or protections. Where it’s legal, there is transparency.”
A legalised system, such as the one Gaynor favours — which has operated in the US state of Oregon for the past 20 years — provides for VAD in very restricted circumstances, with the stipulation that patients must be able to self-medicate.
The Oregon Health Authority, the state’s version of the HSE, polices it and reports annually on its activities and outcomes.
Patients do not have to be referred for psychiatric or psychological evaluation beforehand, but may be if a doctor deems it necessary. Either way, the very fact that a patient has to talk through their situation with a doctor automatically acts as a filter to ensure people who opt for VAD are doing so willingly and with full knowledge of what it entails.
A significant proportion of people — one in three in Oregon — who receive their prescription do not actually take it.
“But they have a better standard of living because of it. They know they have security at the end.
“They don’t have to worry about a horrible death, so they can concentrate on enjoying the time they have left.
“My doctor can’t tell me when exactly I’m going to die, but I’ll know when I’ve had enough. I want to be in charge when that happens,” Gaynor says.
A formal system of VAD would also safeguard doctors, many of whom have to prescribe and administer pain relief that ultimately hastens death, while trying not to actually cause the death. It’s a tightrope, with only a flimsy legal safety net.
The Oregon system, in common with others, also provides an opt-out for doctors, on grounds of conscience.
Gaynor says she understands the instinct of the medical profession is to preserve life, so some doctors may never be comfortable with VAD, but she also believes most would support it, if it was introduced here.
“We have such advances in medicine that they blur the line between keeping someone alive and enabling them to live.
“But because we have advances in medicine, no-one should suffer anymore in death,” Gaynor says.
“I hate hearing it said, after someone dies, ‘at least they’re not suffering anymore’. Why should they suffer?
“I don’t want my children to be saying ‘at least she is not suffering’. I don’t want to see my pain in their eyes,” she says.
For now, it’s the emotional pain that affects Gaynor most. Thinking of her children, and all the time she won’t share with them, hurts beyond description and the tears she has battled to keep at bay fight their way out.
“I have days when I am terrified and I am heartbroken. I’m wasting time being frightened and I don’t have time to waste.
“I love my kids so much and I want to see them grow up, I want to see them leave university, I want to see my grandchildren, I want the three-year-old to remember me. I want to be here when she’s a horrible teenager, like her mum was.” Gaynor manages a laugh, glancing up lovingly at the photograph on the wall of the smiling young woman who was her firstborn and remembering how they sparred during the terrible teens.
“But none of this is going to happen and by not talking about it, I am still going to die. I just want to die my way,” Gaynor says.
“There will come a point when the pain becomes unbearable and they have to give us the pain relief to match the pain and, at some stage, the pain relief becomes terminal. I just want to step in before then, so I can die me and not die as a disease,” Gaynor says.
To keep being Gaynor and have a calendar of medical appointments hanging over her, and a daily cocktail of drugs to be coordinated, is a challenge, but she keeps doing the things she loves, as much as possible.
An avid needlecrafter, she designs charts for other stitchers to embroider and has sold her work worldwide. Holmsey Hare hangs on many a child’s bedroom wall.
She’s writing a book about her life for her children, because she doesn’t want anything to be left unsaid.
She posts regularly on her blog and Facebook site, kick-starting a discussion she hopes will someday earn its place in the statute books.
She hopes to post right to the end to give people an insight into what it’s like to be close to death and she has asked that her family record her final moments and also post the footage, because she wants to demystify a process everyone will go through, but for which few will have any preparation.
Sharing it with the world will ultimately be a decision for her family, though, and she knows they may have differing views.
But one instruction she is adamant they will follow is to click ‘play’ on the list of songs she wants to hear belting out by her bedside when she is dying. She reviews the playlist every so often, adding a new one or rearranging the sequence, but she’s happy that each one, at some stage, formed the soundtrack to her life.
“They’re a bit tongue-in-cheek,” she says with a grin. They currently include ‘Every Breath You Take’, by The Police, ‘There Must Be An Angel’ by Annie Lennox, ‘Don’t You Forget About Me’ by Simple Minds, and ‘This Is The Last Time’ by Keane.
Naturally, there’s a Depeche Mode recording in there, too.
The gobby woman who wants to start a national conversation smiles as she reads the title. She has picked ‘Enjoy the Silence’.
Gaynor is chronicling her daily life, and her thoughts about VAD, on her Facebook page, Dying With Dignity Ireland, and she also discusses the issue on her blog, which can be found at dyingwithdignityblog.wordpress.com.
This story first appeared in the Irish Examiner.