A life well lived, a death journey unexpected
By David Swanton
Posted Friday, 6 November 2015 in ON LINE opinion - Australia's e-journal of social and political debate
Posted Monday, 2 November 2015 in the Canberra Times, p. Times 1
I am exasperated, devastated, and relieved.
I’ve experienced these emotions during the recent death of my mother. She said, in one of her last phone calls to me, that ‘I was told that it would be painless, and I’m so cranky’.
My mum, Bet to her friends, had pancreatic cancer. From her diagnosis in April until her death in September there were some bright moments, but we all knew there would ultimately be a downward slide. Even though she was told that her death by cancer would be made painless, she interpreted that as meaning that there would definitely be no pain or suffering, and was confident that would be the case. Unfortunately, she was wrong.
Her brother had recently died of the same disease, and had had significant surgical intervention. After medical advice, mum opted against major surgical intervention (though a couple of stents were inserted), chemotherapy or radiotherapy, not that those were really options for someone who was otherwise healthy, but was in her eighties and somewhat frail.
The reason I am exasperated, when mum was just cranky, is because my disposition is not as uplifting and indomitable as hers. Nobody’s could be. She never once asked ‘why me’, and she never complained about her situation. When we asked mum about her pain level, and hoping she had no more extreme pain flare-ups (a fact of life for many cancer patients, but she could not recall being forewarned), she would give a thumbs up, and try to manage a smile. She didn’t want us to feel down. She left a message in April to inform me of her diagnosis and said ‘Darl, it’s all OK, just calling to let you know I’ve got the results back and I’ve got pancreatic cancer. No need to call back. Bysie Bye’. It is easy to be exasperated when a person of such wonderful spirit had expectations of a painless death that could not be met.
Her poor quality of life in the last months was not the fault of her palliative carers. Her doctors and nurses at her hospital were professional, compassionate, and according to mum, ‘excellent’. All staff were committed and sensitive to the needs of patients in pain and suffering. However, more money is needed for the palliative care hospital system. Mum’s needs have always been simple, but she couldn’t use a phone or TV because, apparently, three quarters of the phones and televisions in the hospital didn’t work. We had to buy and teach her how to use a mobile phone in her last month (so she could call us as required). In the absence of a working TV that would have taken her mind off things, she existed to think, breathe and stare at a ceiling when we weren’t there. We can do better for our terminally ill in contemporary Australia.
Perhaps it is now moot, but it is interesting to speculate what mum would have done if she knew that she would eventually have two episodes of excruciating breakthrough pain: one requiring dramatic ambulance attendance, and the other while in palliative care. As well as these pain events, there is also a lack of dignity associated with this disease. She was toileted and showered, there was a cocktail of pills and suppositories, ongoing and frequent injections of painkillers and antiemetics, cannulas, little vomiting episodes, dryness, artificial saliva sprays (because drinking was nil or minimal), lack of appetite, nil food for the last week, emaciation, and gurgling respiratory infections. And that was in addition to the bowel blockage, the appearance of being six-months pregnant, the threat of possibly vomiting fecal matter, and knowledge that she would not be sedated so that scenario could never arise. And perhaps she should have buzzed the nurses every half an hour for extra pain relief, rather than waiting…
Until the last three days she still had a bit of spark. At that stage she indicated she would be happy to die then. She was then consumed by the disease, her optimism and vitality overrun as she drifted in and out of light sleep, signalling the onset of the inevitable. There was lots of hand-holding, lots of support, and distress at the discomfort of our loved one.
After her many pain events (minor events though were well managed in palliative care) and suffering, she died in the company of a nurse, while her loving husband and I, her eldest son, were but ten minutes away from being with her. She would have preferred dying in the company of her loving family and relatives, and preferably at home. Who wouldn’t? If she could have chosen her time of death, then the family could have been there for her. The extended family has been devastated.
Bet suffered more than I could or would wish to endure. I am a chapter coordinator for Dr Philip Nitschke’s voluntary euthanasia organisation, Exit International. Exit members, mainly your average grandparents, have access to information that would allow them to, for example, procure drugs that lead to a peaceful death. Such processes are currently illegal in Australia, despite overwhelming public support. Nonetheless, thousands of Australians have procured and are procuring their illegal drugs, just so they have the option of dying before their pain and suffering becomes unbearable.
Many patients would benefit if increased funding were made available for the palliative care system, which is more likely if voluntary euthanasia were a legal option. If I were in my mum’s position, I would have chosen, intentionally, to die earlier, rather than suffer as mum did. If mum had been better informed and had chosen that option, she would not have suffered as much. Given the cost of doctors, nurses, medications, hospital beds, leave from work for visiting relatives and friends, there is a substantial cost to keep patients alive and in a relatively pain free state. This is a cost society chooses to bear, humanely, for those patients who wish to hang on to the natural end, such as my mum. We wouldn’t want it any other way.
On the other hand, there are better opportunities for governments to expend scarce health budget funds rather than where they are not wanted, especially in these times of austerity. Many patients don’t want excessive funds spent on them and would rather, if legal options were available, choose voluntary euthanasia rather than pain and suffering.
I want the option—I hope I will have the legal option—of voluntary euthanasia. Bet chose not to have euthanasia. Whatever her choice was, it was her individual choice about her life, and it needs to be respected, as everybody’s choice should be. Bet is no longer suffering, and for that we are relieved. She had a great life. She loved and was well loved. She might have joked that mums are always right, but on her chosen end-of-life journey, I suspect even she would say it didn’t meet expectations.
Voluntary euthanasia is about choice and respect
By David Swanton
Posted Monday, 8 June 2015 in the Canberra Times, www.canberratimes.com.au/comment/voluntary-euthanasia-is-about-choice-and-respect-20150607-ghhhy4
Posted Thursday, 11 June 2015 in ON LINE opinion - Australia's e-journal of social and political debate
It comes as no surprise that the Catholic Archbishop of Canberra and Goulburn, Christopher Prowse, has opposed euthanasia (Canberra Times, 28 May 2015). What people in his position often fail to realise is that if you propose a position as a basis for public policy then your position and the basis for it ought to be, and will be, subjected to scrutiny. His and the Catholic Church’s ongoing opposition to euthanasia fails any objective analysis.
Euthanasia is defined as a deliberate act intended to cause the death of a patient, at that patient’s request, for what he or she sees as being in his or her best interests. The voluntary nature of euthanasia is implicit in this definition, and if society were to respect the informed views of those choosing voluntary euthanasia, then it should be permitted.
Mr Prowse and the Catholic Church should realise that voluntary euthanasia will not result in more people dying, but in fewer people choosing to suffer. Mr Prowse stated that ‘euthanasia is dangerous, which is one of the key reasons the Catholic Church has long opposed it’. He should have stopped at the first phrase, and then tried to make his arguments. Instead, he has subjected the Catholic Church to scrutiny.
It seems the Catholic Church does things because they have always been done that way and not because they are morally right. This is why the Church is still sexist (women cannot hold positions of power in the church), and homophobic (homosexual acts are acts of grave depravity). It is also morally perverse to advocate worshiping a God as something that is good, when that God, according to the Bible, has unjustly killed people, causes cancer in some children and causes others to suffer. With such a track record, the Catholic Church is poorly credentialed to make a moral case against euthanasia.
The first of Mr Prowse’s three arguments against euthanasia was that it would put pressure on vulnerable people to request euthanasia. This is a valid concern, but not one supported by evidence, given that regulatory options are available to mitigate any problems.
Brisbane euthanasia expert Professor Ben White was quoted in 2014 as saying that ‘a 2012 study had looked at whether men or women were dying more often and at the split between old and young, and people from different socio-economic backgrounds. It found no evidence to support concerns that legalising euthanasia would target the vulnerable’.
For many Australians, particularly those members of Exit International who have manufactured or procured their end-of-life drug of choice, suicide/euthanasia is a very easy option if they wanted it. What I hear from Exit members is that having a suicide/euthanasia drug gives them control and peace of mind (that they will have a good death if any medical condition worsens beyond what they can tolerate), and not pressure to use the drug.
Additionally, if there are concerns about vulnerable people, limits could be put on any regulatory framework for euthanasia, countering Mr Prowse’s second point that ‘acceptance of euthanasia cannot be limited’.
There will always be concerns about sensitive matters such as people’s wellbeing. Regulators should proscribe clinically depressed people and young people suffering from depression (please see organisations such as beyondblue or your physician) from accessing voluntary euthanasia.
Other limitations can be put on euthanasia. Favoured euthanasia regulatory systems require that a patient must request voluntary euthanasia and also be terminally ill in the first instance. However, a strong moral case could be made that even those without a terminal illness might wish to have a rational suicide. The debate about euthanasia and rational suicide ought to continue, and Dr Philip Nitschke will raise these and other matters at upcoming public forums and rational suicide/euthanasia workshops around Australia and overseas.
Mr Prowse’s third point was that ‘legal euthanasia would undermine the human dignity of all people by allowing us to think that death is a solution to serious and difficult conditions such as cancer, depression or Alzheimer's’. On the contrary, the reason why people choose voluntary euthanasia is to maintain their dignity and reduce their suffering. It is their choice about their life.
Why would someone’s dignity be undermined if somebody else chooses to shorten their life by perhaps ten days to reduce their suffering from cancer? While anybody’s death is the cause of much grief and sadness for loved ones, we should take some solace from the reduction in their suffering. To address Mr Prowse’s other concerns, the most favoured regulatory systems would prohibit depressed people and people with Alzheimer’s from accessing euthanasia (possibly through psychiatric assessments).
I agree with Mr Prowse about the importance of palliative care and it being available to those who need it. Of course, when a patient considers palliative care cannot meet their needs, then compassion, dignity and respect demand that voluntary euthanasia ought to be an option available to them.
Although over 80% of Australians, including a majority of Catholics, have continued to support the option of voluntary euthanasia over the years, the clergy and most politicians do not. Perhaps those opposing euthanasia should consider the principle of ‘do unto others as you would have them do unto you’. People generally dislike others interfering in their life, not respecting their views, telling them with whom they should have sex, or how much pain they should suffer when at the end of life. Consequently, people ought not dictate how others live or end their lives. Doing unto others what you would not want done unto yourself would be unethical.
The death penalty is morally unacceptable
By David Swanton
Posted Thursday, 5 March 2015 in in ON LINE opinion - Australia's e-journal of social and political debate
Capital punishment has recently become an increased focus of international attention and debate. From an ethical perspective, many of the arguments for and against the death penalty are missing a consideration of key issues.
Criminologists consider that the major reasons for criminal penalties are rehabilitation (reforming the prisoner to be a better citizen), incapacitation (preventing the prisoner from committing other crimes), deterrence (discouraging the prisoner and others from further crime) and retribution (society punishing the prisoner as vengeance for a criminal act). Rehabilitation and incapacitation can be achieved through appropriately lengthy jail sentences. The only reasons that could possibly be offered in support of a death penalty are deterrence and retribution.
However, the large majority of experts consider that there is no credible scientific evidence supporting the contention that the death penalty deters criminal behaviour. This is a surprising result for some, but perhaps the criminal mind doesn’t think of consequences or has difficulty computing the risk profiles associated with undertaking a criminal act.
That leaves retribution. Consider whether people would advocate retribution in a hypothetical situation. Imagine that you are the world’s best neurosurgeon and you have surgically removed a patient’s large brain tumour, which would have caused extremely violent outbursts. At the same time, a DNA test links your patient to the violent deaths and rapes of your closest friends. As the world’s foremost surgeon, you know that this person will no longer commit such crimes (they were a model citizen until the tumour developed). There is no need for incapacitation, your patient has been rehabilitated through your surgery, and there is no need for deterrence (as people don’t plan to have brain tumours). Yet some people might still consider that retribution, through capital punishment, is desirable, despite its unjustness. What would we want to happen if, instead, each of us were the patient?
This hypothetical situation is not unrealistic, because many people and cultures consider it acceptable to kill people against their will. Many religions teach that their gods or deities of choice have killed many others, through great floods, the Passover (death of newborn infants), and much general smiting done without presumptions of innocence and trials. Many people believe that these religious teachings are good. Over time, these beliefs have manifested themselves in many legal systems. Indeed, the four most populous countries, China, India, the United States of America and Indonesia, have the death penalty on their statute books.
Although many might support retribution as an argument for the death penalty, it doesn’t conform to modern notions of how we should treat fellow humans. A better alternative to many people’s eye for an eye system of morality is one based on an ethical principle that it is wrong to kill other people against their will. There are some exceptions to this of course, self defence being the most notable. According to this principle the death penalty would be forbidden. If it is wrong for one individual to kill another then it should be unacceptable for the state to cause a person’s death in civilised societies. The state, as a collective of individuals, should not generally have moral rights that individuals do not have.
Modern societies recognise that prisoners should be treated humanely, consistent with human rights obligations. Some criminals do commit horrific crimes, but capital punishment, torture, or mistreatment of prisoners serves no utilitarian purpose and signals, wrongly, that violence can solve problems. An eye for an eye society is one that is of years gone by, and unsuited to a modern civilised society.
It seems clear then that any countries that want to take the moral high ground and campaign against capital punishment for their nationals who have committed crimes in other countries should abide by some rules.
First, they should not have the death penalty on their own statute books. That would be hypocritical.
Second, they must not consider that killing some people is acceptable according to some of their belief systems. It is hypocritical to denounce killing in somebody else’s moral or legal system, if you accept it in your own.
Third, they should not campaign against capital punishment only for their citizens. In moral matters, what is right for one nationality ought to be right for people of other nationalities. To do otherwise is self-serving, nationalistic, and a form of racial/cultural/ethnic discrimination.
Fourth, they should make representations against the death penalty with equal vigour to all countries that have capital punishment. To make representations to one country, and not for example, to China or the United States, indicates bias. International relations are complex, but moral campaigns aimed at one country over others cannot be morally sound.
If countries follow these rules, they can work diplomatically and cooperatively with each other to endorse and uphold the principle that killing others against their will is wrong, and in so doing eliminate capital punishment. This principle should be applied to all people, in all countries, at all times.