Last month’s Dignity in Dying event shone a new light on a topic often overlooked by Stormont. What causes our politicians to cast the debate surrounding assisted dying to the shadows, and how does that impact the people of Northern Ireland? Clare Hogarth investigates:
A discussion on the topic of assisted dying on 30th March was the first of its kind to take place since the cancellation of an event in 2011. The event in the Hilton went further than Dr Philip Nitschke’s banned Safe Exit Workshop six years ago, attracting an audience of all ages to discuss and share their thoughts.
While Nitschke planned a demonstration of the machine used in the euthanasia process, the event organised by Dignity in Dying was a night for “exploring different perspectives”, allowing people from all categories of thought to get involved.
Planned to coincide with the Association of Palliative Medicine’s Supportive and Palliative Care conference, the night revolved around the perspectives of palliative care professionals. Dr Richard Sheffer and Mark Jarman Howe addressed the room with their thoughts on how palliative care can work hand in hand with assisted dying.
It became clear the discussion of assisted dying was not exclusive to any age bracket, to the surprise of some in attendance as the observation “I thought I would be the only person under forty here…apparently not” rattled around the room.
First up on the panel was retired Queen’s professor Bert Rima, offering perhaps the most personal insight into the effect the current law on assisted dying has on those in need. Mr Rima’s wife Barbara had been suffering from a recurrence of breast cancer and MS, to the point she decided she would rather end her life.
However, under current legislation the closest place to legally allow assisted suicide is Dignitas in Switzerland, meaning Barbara would have to travel to get her wish. By the time the couple had solidified plans, Barbara was too weak to make the trip: Listen to Bert Rima here.
While Swiss law allows a terminally ill person to administer lethal medication to end their life, the Suicide Act of 1961 means it is illegal in the UK to assist someone in their death. As a result, Barbara had to do this by her own means.
Mr Rima returned home one Sunday afternoon to find his wife had taken poison to end her suffering. He explains that it “was largely because of this event I have got involved in Dignity in Dying”, emphasising the effect the current law has on those suffering and beyond: Listen to Bert Rima here.
Assisted dying, also known as physician-assisted suicide (PAS), refers to the act of suicide assisted by another person, in most cases a physician. Assisted dying gives the subject control of when, where and by what means they die, with many seeing the use of fatal pills or injections allowing a more peaceful death than other suicidal means.
There is a significant difference between assisted dying and euthanasia, where in cases of the latter the means of death is administered by the physician as opposed to the subject. In cases of assisted dying, the subject not only must voluntarily express their wish to die and request the means to do so, but must also administer the pills or injection themselves.
There are a number of different safeguards in place where assisted dying is currently legal, as can be seen in Canada, Belgium, the Netherlands, Luxembourg and Switzerland. Similar “end-of-life” practice can be seen in California, Montana, Oregon, Vermont and Washington, known as ‘medical aid in dying’ as opposed to assisted dying.
Bringing it home – what do we know?
A survey of 100 people conducted for the purpose of this investigation indicated that 95% of the Northern Irish population were familiar with the term assisted dying.
When asked about their initial thoughts, 82% agreed with its use, with a majority citing mercy and ending suffering as their reasons for this. Both disagreement and uncertainty were balanced at nine votes each, with the latter justified by the question of where the line would be drawn in granting requests for assisted death.
Where do we stand?
After Lord Falconer of Thoroton’s 2014 bill to the House of Lords failed to progress due to a General Election, Labour MP Rob Marris introduced another to the House of Commons a year later. Based on Falconer’s proposals for assisted dying, Marris’ 2015 bill was the first opportunity the Commons had to vote on the issue since 1997.
The bill was defeated 330 to 118, with 13 out of 14 Northern Irish MP’s voting against, while the other failed to attend.
This political rejection of the issue could almost be seen as complete detachment in Northern Ireland. Assisted dying is essentially non-existent in Stormont and can only be seen in the Green Party’s manifesto. Boyd Sleator, Operations Co-ordinator for Northern Ireland Humanists and advocate for assisted dying, does not see any Party including it on their to-do list for a long time: Listen to Boyd Sleator here
A medical perspective
The medical perspective on assisted dying is incredibly significant, with the role of prescribing and attending doctors crucial to the process.
The British Medical Association (BMA) “oppose assisted dying in all its forms”, giving particular emphasis on the high quality palliative care available and their concern for the pressure it would put on vulnerable people.
Another concern is the “slippery slope” of safeguarding assisted dying, with fears that passing time would see “…the law being extended beyond the limits originally envisaged at its inception.”
Dr Idris Baker, a consultant in palliative care at Morriston Hospital in Wales, shares the same stance.
“A change in the law isn’t needed, would send the wrong signals about life, and would make it harder to do what’s really needed for the dying.”
He echoes the BMA’s fears for the vulnerable, about which he debated in Belfast against Baroness Warnock: “…a few years ago she said that it was noble for someone to volunteer to shorten their life and so not be a burden. What’s noble is for the rest of us to redouble our efforts to make sure that no one feels worthless.”
Dr Baker says it is his experiences with his patients that make him so passionate about tackling the gaps palliative care may have, not ending life: “You should see the way people reframe their hopes to realign them with a changed reality. It is without doubt the most humbling thing I have seen in my career and I see it time after time, day after day. So part of my job is to support people in trying to do that.”
After his wife’s death, Bert Rima has become a steadfast campaigner for Dignity in Dying. When asked about the arguments by those who oppose changes to the law, he had much to say on their effect in reality: Listen to Bert Rima here.
Boyd Sleator refutes the same arguments, with particular rejection of the theory assisted dying will place pressure on those in vulnerable positions: Listen to Boyd Sleator here.
While he acknowledges safeguarding assisted dying would have its difficulties, Boyd explains “by reviewing and revising the process we can constantly update and improve, and that is what we should always be looking at doing.”
Boyd makes the stance of Northern Ireland Humanists clear, in that they are not advocates of assisted dying, but advocates of choice: Listen to Boyd Sleator here.
People like Mark Jarman Howe, part of the panel at Dignity in Dying’s event, make it clear the stance on assisted dying in the medical world is not so black and white.
“If we value how end of life and hospice care focus on the individual’s wishes, then why would we not want to extend that to the how and the when, not just the where?” asks CEO of Essex Hospice Mark Jarman Howe
Howe is not alone in the medical world. Dr Richard Sheffer, with 20 years experience in both palliative and hospice care, refutes that palliative care and assisted dying are mutually exclusive, but a team.
Where palliative care cannot relieve suffering, he believes we cannot ignore the need for assisted dying to step in: Listen to Dr Richard Sheffer here.
Where do we go from here?
Both Bert Rima and Boyd Sleator doubt there will be much movement on assisted dying in Northern Ireland for a long time.
However, while the politicians continue with other matters, the people of Northern Ireland continue to live, learn and have their say. When asked if they would vote to allow assisted dying in Northern Ireland, only 9% of survey respondents voted no. Of the 91% that voted yes, 25% said it depended on the circumstance and safeguards that were put in place.
In the current political climate, with an Executive struggling to be formed, it is clear assisted dying is at the bottom of an extensive to-do list, if at all.
Meanwhile, the people of Northern Ireland continue to discuss and debate, and Dignity in Dying’s campaign will persist until they see movement.