euthanasia

Suicide, Euthanasia, & The Bit In Between

/ Siobhan O'Dwyer / 2 Comments

I wrote the following a year ago, but, for various reasons, didn’t post it. Reading Professor Brian Draper’s excellent op-ed on older male suicide today, I decided the time was right to share my reflections on these complicated issues.

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I spend a lot of time thinking about death. It’s kind of an occupational hazard. But lately I’ve been thinking a lot about suicide and euthanasia, and the murky area in between.

The dementia research that my colleagues and I conduct focuses on quality of life, particularly for people living in residential aged care facilities. I’m yet to visit one of these facilities and not cry in the car on the way home. Similarly when I talk to families who are caring for people with advanced dementia at home, my heart breaks. Families says things like “She wouldn’t want to live like this”…. “We wouldn’t let an animal suffer, but he has to”… “Hopefully by the time I get to that stage, euthanasia will be legal”. Dementia’s a bitch (as are many terminal illnesses) and people want the option to die with dignity, so I’m definitely pro-euthanasia.

But I also conduct research on suicide. In that research I encounter people who are isolated, trapped by circumstance, or in terrible psychological pain. I also hear stories of families devastated by a loss they didn’t see coming and cannot understand. Suicide’s a bitch and the tragedy is that it could often have been prevented. So I’m definitely anti-suicide.

But can you be pro-euthanasia and anti-suicide? At their core they’re both about ending a life and many would argue that  there is no difference. From my perspective though, the difference comes down to compassion and suffering. Euthanasia is about offering compassion; suicide occurs in the absence (or perceived absence) of compassion. Euthanasia is about alleviating suffering when all other options have been exhausted, while the suffering that leads to suicide can often be alleviated with psychological therapies and better support systems. I think it’s possible to be pro-euthanasia and anti-suicide – to recognise that there is no dignity in dying a slow, painful death, while simultaneously acknowledging that we can do more to support people for whom an early death really would be a tragedy.

What concerns me is that the current public debates seem to suggest that you can only support one or the other. Euthanasia and suicide have both had a lot of coverage in the Australian media lately. The suicide prevention campaigners have set an ambitious goal of reducing suicide rates by 50% in the next 10 years and programs like RUOK Day and Mates in Construction are helping to normalise conversations about suicide. This is a good thing. At the same time, Philip Nitschke and other euthanasia campaigners are continuing to push for laws that will allow doctors to openly support euthanasia for patients who are terminally ill. This is also a good thing. Yet neither side seems willing to acknowledge the overlap in their work. Not every suicide is a preventable tragedy and not every act of euthanasia occurs when all other options have been exhausted. Some suicides might be better described as euthanasia and some acts of euthanasia as suicide.

So what can we do? To be clear, these are merely my reflections, from where I sit right now, this very minute, informed by the experiences that have brought me here. And as such, they are no more or less valid than anyone else’s. I’m also incredibly mindful that this debate takes on new complexity in the context of dementia, where issues of capacity and consent are complicated by cognitive impairment (see here, here, here, here, and here for more on this). But I would like to encourage a public discourse that acknowledges that death – like most things in life – exists on a spectrum. Some deaths are bad, some deaths are good, most lie somewhere in between. If our ultimate goal is a good death, suicide prevention campaigners need to acknowledge that until euthanasia is legalised, they will never be able to prevent all suicides. And euthanasia campaigners need to work harder to develop safeguards and referral pathways for people who could be better supported in other ways.

It’s Complicated

/ Siobhan O'Dwyer / 3 Comments

While conducting research on suicide risk in family carers of people with dementia, my colleagues and I received a note from a participant that said You asked if I wanted to kill myself, but you didn’t ask if I wanted to kill the person I’m caring for. Naturally this raised a lot of questions and concerns and we decided to embark on a study of homicidal ideation in family carers. The findings from that study were published this week and I thought I’d take the opportunity to share them here and discuss the implications.

Here’s a brief summary:

  • We interviewed 21 Australians providing care for a family member with dementia.
  • Two reported actively contemplating homicide while caring and four expressed a passive desire for the care recipient’s death.
  • When asked about homicide, four carers talked about euthanasia.
  • Thought of homicide and passive death wishes were the result of physical and psychological fatigue, an unwillingness to place the person with dementia into residential care, self-defence, isolation, and a sense of being trapped in the caring role.
  • Thoughts of euthanasia were framed in terms of compassion, quality of life, dignity and respect for the person with dementia.
  • None of the carers who had contemplated homicide or had passive death wishes had ever acted on their thoughts.
  • Those who spoke of euthanasia were frustrated at the lack of legal options, but adamant that they wouldn’t take matters into their own hands.
  • All the carers who reported homicidal thoughts or passive death wishes were women.
  • None of the carers who had contemplated homicide or had passive death wishes had ever shared their thoughts with anyone.

To our knowledge there has been no previous research on homicidal ideation in family carers. What previous research has shown, however, is that up to 40% of completed spousal homicide-suicides among older adults are perpetrated by someone caring for a partner with a long-term illness or disability. By asking carers about homicidal thoughts while they are caring, the current research allows us to better understand the factors that place people at risk and identify ways to prevent these sort of deaths in the future.

Although thoughts of homicide do not necessarily lead to homicidal behaviour, the fact that some carers are contemplating homicide is a cause for concern and reflects the high level of distress that many carers experience on a daily basis. Unfortunately, some people will be quick to use this work to shame carers who contemplate homicide. Although I don’t condone violence or abuse, I also don’t want to see carers vilified. The vast majority of carers are amazing people, doing an incredibly difficult job, with very little support. So let’s use this research to help them see that they’re not alone and help them find the support they need. Those on the frontline – GPs, social workers, nurses, pharmacists, aged care providers, and advocacy organisations – all have a part to play in identifying and supporting carers who are struggling. These are not easy conversations, but they are important ones.

I think it’s also important to recognise that these findings are indicative of a bigger social problem. It’s easy to think of dementia and caring as personal issues, but they are social, political, and economic issues. In Australia alone there are more than 300,000 people caring for family members with dementia and if they all stopped tomorrow, it would cost the government more than $30 billion a year to replace the care they provide. Carers make a significant social contribution, but much of the stress they experience stems directly from a lack of social, political, and economic support — delays in the dementia diagnosis, a lack of access to quality respite care, a lack of understanding from employers, and the challenges of navigating the aged care system, just to name a few. So while we must work to identify and support individual carers who are contemplating homicide, we must also take action at a higher level, advocating and agitating for a social, political, and economic framework that makes caring a less stressful and more sustainable experience.

The overlap between homicide and euthanasia in this study also highlights the need for a serious public conversation about the right to die with dignity.

As this research gets disseminated – particularly via the media – the findings may be taken out of context, oversimplified, or hijacked. But homicidal ideation in family carers is a complex phenomenon – it cannot be reduced to soundbites, it must not be used for political gain, and there is so much about it we still don’t understand. Ultimately I hope that this research will start important conversations about caring and its role in our society. I also hope it will lead to further research on homicidal ideation in carers (including quantitative studies, comparisons across countries, and research on people caring for family members with other illnesses and disabilities) and help to facilitate the social, political, and economic changes that are needed to better support people with dementia and their families.

If you’d like to read the full paper and have institutional access, please go to the journal website. If you don’t have access, please contact me for a copy.

If you or someone you know is contemplating homicide or suicide, or needs urgent support, please contact Lifeline on 13 11 14, The Suicide Call Back Service on 1300 659 467, or the crisis line in your area.