Debate: The Dying with Dignity Bill 2020
Sarah Kiely and Rónán Mullen explain why they are, respectively, in favour of, and against, the proposed legislation.
The Dying with Dignity Bill first came to my attention when I saw Vicky Phelan on the news advocating for it.
The bill has my wholehearted support, not just because we owe Vicky a huge debt of gratitude for her contribution to Irish society, but also because I agree with the fact she has the right to die with dignity at a time of her choosing.
Why am I getting involved?
My husband, Damien O’Shaughnessy, was diagnosed with cancer in 2018. This is some of our journey.
In 2017, I had the most wonderful life, not perfect, because that doesn’t exist, just wonderful. I was married to Damien. We had two children, Emily and Tiernan, and both of us had jobs we loved.
We had a mortgage we could manage after being in financial difficulties like many others during the recession, and were grateful to be back on track.
Our children were growing fast, both now teenagers. We looked forward to more time together and having adventures we missed when we were younger as we chose to have kids when I was 21 and Damien was 24, a choice we made together.
Towards the end of 2017, things took a sinister, cruel twist. Damien became unwell and, before long, we were sitting in a hospital faced with a raft of tests and procedures for the coming weeks and months.
On St Stephen’s Day 2017, we left our home and our children to go to St Vincent’s Hospital in Dublin to have a biopsy performed on Damien. We knew then we were in trouble.
On January 3, 2018, we went back to St Vincent’s to get the results.
I will never forget that day. It was cold and dry. We were so nervous. We knew this was life-changing. It didn’t feel real, it was like watching someone else’s life. This can’t happen to people like us, can it? Yes it can and it does, every day, in hospitals across the country.
As we sat in the waiting room, we spoke about “whatever happens” and the need to do whatever was required to get better. We met with the consultant and the CNS. We heard the words “the results of the biopsy are back, and you have cancer” and our world shattered right there and then. I cried and looked at Damien and he was shaking. We held hands, his hands were cold. We just cried.
The consultant and the CNS were so nice and told us about the plans for treatment, and how this could be curative.
We were full of hope at that stage. Chemotherapy then surgery — that was the plan, and we accepted that. On the way home, we spoke about how we were going to tell the kids. A cancer nurse told us not to deliver bad news — especially not to children — in the evening, and to wait until morning instead. So we did.
In the following weeks and months, life was tough on all of us. We remained hopeful and spoke about everything. By everything I mean death, the funeral, who was to be in the room at the end. Mostly, we spoke about dignity.
Dignity was the overarching concern for Damien who, at 45 years of age, was fit and healthy until this diagnosis. He was very clear about what he wanted and what he didn’t want, especially when he couldn’t speak for himself. Pain was a big issue. He asked the consultant at a later point would he be in pain at the end. I was broken, he was broken, both wondering if he was facing a painful death. We thought, 'this can’t happen, we can’t let this happen'.
We had to dip in and out of these conversations with each other as it was so very difficult. They usually took place in the morning to “get it over with” and, looking back, Damien was so thoughtful in all of them. We cried so much that at one point he said: “That’s it. I’m not crying any more." We both laughed and agreed to just cry in the morning and then make the best of the day.
“Any day you can put your feet on the ground is a good day,” he said.
In May 2018, Damien had a liver resection. He spent 10 weeks in St Vincent’s Hospital and he was seriously ill. He went through so much in that period of time, including sepsis and pulmonary edema, as well as needing a feeding tube which he hated. I stayed in a B&B from near the hospital Monday to Friday and went home at weekends to see the kids. We hated not being together. It was very difficult to leave Damien, even for two days. It was also difficult to leave the kids every Sunday for the week.
On August 29, 2018, we went back to see the consultant. The cancer was back. We knew, for lots of reasons I won’t go into. We could see it and feel it.
"I don’t know how much more of this I can take Sarah," he said, and our hearts were shattered.
Damien died in Milford Hospice on October 13, 2018, after a traumatic week. We had 21 years together, and I am grateful for that.
The last few weeks of Damien’s life were not what they should have been. Given the choice, I know he would have chosen to end it differently.
It is so important we consider the Dying with Dignity Bill in a progressive society where we value life but also value choice and dignity.
How can we take choice away when faced with such pain and suffering? Where is the person’s dignity in all of this?
I welcome any debate and, as someone who was elected to Limerick City and County Council in 2019, I felt it my duty to speak about our story and use my platform within Fine Gael to ask my colleagues to be brave and have a free vote on this issue.
I understand this is a vote of conscience, and that is why I’m asking the party to allow a free vote on the matter.
I agree the bill as it stands needs to be amended to safeguard vulnerable people and address other aspects. I don’t have the expertise to do this, but there are people in our party and in other parties who can work on these issues to make the bill acceptable and, more importantly, possible to pass in the Dáil. I know this bill isn’t perfect and needs a lot of work, but let’s do the work. Let’s get a cross-party committee together and stop the suffering.
The private members legislation tabled recently by Gino Kenny TD, the Dying with Dignity Bill 2020, is wrongly named. A more objective title would be the 'Facilitation of Assisted Suicide Bill’. The word ‘dignity’ in the title of legislation to permit physician-assisted suicide misrepresents the meaning of an important word. And it ignores the respect for human dignity to which our healthcare system currently aspires and which, mostly, it achieves.
Our dignity consists in our intrinsic personal worth and entitlement to respect. Nobody can take it away. The question always is whether and how we and other people respect it.
But the deployment of the term is deliberate. As we have seen with other social issues, campaigns for social change involve a complex set of manoeuvres involving carefully-chosen language, use of personal stories, co-option of supportive media, and management of phased processes giving the appearance of consultation while moving people towards a determined outcome.
In recent weeks, we have seen the beginnings of a campaign to convince us that human dignity demands the legalisation of assisted suicide as a compassionate response to terminal illness. Among others, Vicky Phelan, whose legal action against the State exposed the shameful treatment of many Irish women by the CervicalCheck system, has spoken about the suffering she has endured due to her condition, how she wants to end her life at a time of her choosing, and her support for laws which would allow her to do so. Her call has been supported by a number of politicians and media figures.
Ms Phelan is a brave campaigner who has fought to expose injustice in the way she was treated by the health service. But for all the credit she deserves, her call on euthanasia is the wrong call coming very much at the wrong time.
Ireland is still in the grip of the Covid-19 pandemic, and the change which it has brought to our lives has sapped the morale of our people. This has been felt especially by the elderly. As Rónán Collins, a practicing geriatrician, said recently, “a lot of older people are now expressing the feeling that maybe life isn’t worth living any longer”.
Against this backdrop of weakened national wellbeing, any suggestion that some lives aren’t worth living any more is unwelcome.
Also, in recent decades, huge energy has been devoted to fighting the scourge of suicide in Irish society, particularly among young men. We undermine that effort by proposing laws to permit suicide in certain cases.
Proponents of assisted suicide say it is needed because of the suffering associated with terminal illness. But we must challenge the idea that human suffering is inherently unmanageable. We should not devalue the achievement of palliative care services which are helping people to live as well as possible for as long as possible.
I surveyed these issues as part of a report, The Provision of Palliative Care in Europe, adopted by the Parliamentary Assembly of the Council of Europe in 2018. Certainly, there are countries which need to improve access to opioid-based pain relief as part of improved provision of palliative care services. But key to an understanding of good palliative care is that it is about much more than the alleviation of physical symptoms of discomfort.
It is about emotional, psychosocial, spiritual, and family supports. When these are addressed, and when the appropriate management of physical discomforts is in place, a person’s situation can be transformed. Across the continent, even as death approaches, patients and their families can and do experience peace and positivity when offered the support they need.
In preparation for my report, I met with palliative care specialists, hospice administrators, patients, medical academics, representatives of cancer care NGOs, and politicians from various parts of Europe — most memorably in Barcelona where palliative care services are particularly well developed. I heard two views on assisted suicide from the experts. For some, it was a marginal philosophical and political argument that should not distract from the work of improving palliative care services. Others took the view that assisted suicide would undermine palliative care in its essence because it strikes at the idea that people, with support, can live well despite the limitations of illness.
Of course, assisted dying gets packaged by some as an issue of personal autonomy — the idea that what I choose to do with my life, or how I choose to die, is my own business and nobody else’s.
But no man is an island. We all live as part of a society where we owe each other the bonds of solidarity and care in times of grief, hardship, and sickness. And we need each other’s help to stay strong in the face of the unavoidable challenges of life. Euthanasia negates that solidarity. It expresses the false idea that suffering can’t be managed and that those approaching the end of life are a burden to themselves, their families, or even the State.
In the US state of Oregon, where euthanasia is legal, 80% of those who applied to end their lives in 2018 were aged 65 or over, and 50% said their reason for wanting to do so was their fear of being a burden to family, friends, or caregivers.
In Belgium, in the first full year of euthanasia in 2002, 235 people were euthanised. That number has grown every year since and, by 2018, it had risen to 2,357. In the Netherlands, where almost 5% of deaths are from euthanasia, the government has announced proposals which would allow elderly people who feel their life is ‘completed’ to end it all.
We need to consider how permitting people to end their own lives within a legal framework will impact on other people struggling with the circumstances of their own lives. What starts out as a right for one can soon be felt as an obligation by others and indeed as an expectation from wider society in the context of scarce resources and pressures on healthcare systems.
In the coming months, maybe years, we will hear strong, emotionally compelling stories from people pressing for legal change. But those who manage public debate on our behalf must remember that equal respect is due to all the different experiences of illness and dying. And while people’s personal stories have their own legitimacy, these should be situated within a wider public debate where there is careful scrutiny of the many ramifications of change.
Read the Dáil debates here on the oireachtas.ie website.
