Examples of Letters to the Editor
A Minute for Choice
I just got my latest PSA test the other day. It suggests the seriousness of my cancer and it’s jumped from 95 to 170 in a week.
I’ve had the diagnosis for fifteen years and I am not usually surprised to find PSA increases. But this is a doosie... almost doubling in one month. Although I’m feeling pretty chipper and currently have no significant pain, this score is a sinister reminder that this wretched disease is not lying down.
It gives some added weight to my concern that Parliament should pass the End of Life Choice Bill in 2019. That could offer me a more or less painless death with dignity, something that is not a likely end for anyone with this very active disease.
There are many people in my position. For the sake of us all, write to your MP now to support the EOLC Bill. Thanks.
How can a doctor determine whether an elderly patient is being coerced?
“How do you determine whether an elderly patient is being coerced”? asks columnist Bill Ralston in The NZ Listener (July 14 – 20) and referring to doctors considering a request for assistance to die.
Doctors will be determining it the same way as they do now. They observe the patient’s behaviour when alone, then when in the presence of family members, they observe the behaviour of the family members towards the patient, consult with other medical practitioners who interact with the same patient and draw their conclusions.
We forget that doctors are accustomed to receiving requests from patients that will culminate in death if agreed to. These could be requests to switch off life support or requests to discontinue life-saving treatment.
Coercion assessment is standard practice for some doctors, especially those in intensive care and in hospital/hospice/rest home settings towards the end of life.
The College of General Practitioners is neutral towards the End of Life Choice bill but has made recommendations. One of these it that assessing doctors should have experience in acute and/or end-of-life settings. This is very sensible. Such doctors will already have plenty of experience in assessing lack of coercion.
Who should represent the disabled?
Who better to represent the disabled than a person with a disability? This is the situation of Disability Commissioner Paula Tesoreiro, a remarkable woman by all accounts who has achieved excellence in the fields of academia, sport and in her career of policy making and representation of those in need.
On behalf of the disability community, Ms Tesoreiro has rejected outright the End of Life Choice Bill currently under examination by the Justice select committee, labelling it in her submission a “risk” to the disabled. Not only does she have no evidence for the claim that the Bill represents such a risk, but there is actually evidence to the contrary for her assertion. In jurisdictions where assisted dying has been permitted for two decades, the disabled are not over-represented amongst those who have successfully sought medical help to hasten their death.
The safeguards and processes in these countries very closely resemble those described in the Seymour End of Life Choice Bill, so the question should be posed: If they are sufficient to protect the disabled in those countries, why would they not protect them in our country?
Ms Tesoreiro demands 100% access to palliative care for all people with a disability as a pre-condition to even entertaining the idea of assisted dying. The extension and improvement of palliative care services is a genuinely worthy goal and New Zealand should strive to achieve it with each successive budget.
But no aspect of health care in our country or any other country ever has or ever will be perfectly sufficient for the entire population. All citizens have to accept some limitations on what can be done for them. To deny the possibility of assisted dying to those who desperately need it until such time as perfection is universally achieved is extraordinary.
There are other oversights. Otago University’s PhD candidate Jessica Young noted in her recently released report on support for assisted dying in New Zealand that there were gaps in the data obtained by the multiple surveys conducted on the topic over the past 20 years. Notably, those nearing the end of life had not specifically had their views sought and neither had the disabled. Ms Tesoreiro has taken it upon herself to speak on their behalf, unsurveyed though they are.
This is another example of a well-meaning guardian making decisions on their behalf “for their own good”. This is the very thing the disability community resents, according to Ms Tesoreiro herself, and that disadvantages them.
Why should people with motor neurone disease be eligible for assisted dying?
Recent news is that New Zealand has the world’s highest number of deaths from
motor neurone disease. This is a group of degenerative diseases which cause
nerve cells (neurones) to die, and that would qualify under the Seymour Bill. People with MND lose the ability to control the muscles which allow them to move, speak, swallow, and ultimately to breathe. No amount of palliative care can give back this function. How many months would you like to endure that condition, when you know there is no cure?
We don’t need an either/or solution. We need an and/and solution so all sufferers die well.
Can’t palliative care relieve pain and suffering?
On 11 March 2017, Clive Deverall took his own life in a public place. It was the day of the West Australian state elections. He left a suicide note. It said: “Suicide is legal, assisted dying is not”.
Mr Deverall had worked for 20 years as Executive Director of the Cancer Council of WA before accepting the brief to set up palliative care services for the State. He functioned as the President of Palliative Care WA until his retirement. He was the recipient of an Order of Australia for Services to the Community.
For some 20 years, he had lived with a rare form of Non-Hodgkin lymphoma (cancer of the blood). After his retirement, he began to lobby for the legalisation of assisted dying.
He stated publicly that somewhere between 4 – 8% of patients in palliative care suffer agonisingly in dying, their end stage symptoms unable to be controlled. These include terrifying hallucinations and unremitting pain.
He said that several senior level palliative care practitioners agree amongst themselves and with their international colleagues that assisted dying is the only humane solution for these patients. They are not convinced that palliative care’s solution of last resort, terminal sedation, is able to deal adequately with all suffering. There is some worry that suffering during terminal sedation may well be continuing - simply, the patient is not able to express it. Death by terminal sedation can take two weeks or longer. Palliative Care Australia openly acknowledges that palliative care has its limitations.
Do I want to die drugged up to the eyeballs?
I fully understand why doctors see dying patients as vulnerable, and therefore want to protect them from coercion. However, in my experience, people facing their own death constantly amaze me with their clarity and honesty.
What they are vulnerable to is the power that medical staff have over their lives, and the extent of drugs and other treatment needed to relieve pain and suffering. My greatest fear around death is not that I will die, but rather that I will spend the last days/weeks of my life heavily under the influence of drugs, to the extent that I lose my sense of self.
While I have no doubt that hospice staff act with compassion and the very best of intentions, it saddens me that some professionals in the hospice movement are opposed to the EOLC Bill. Why should patient self-determination be seen as a threat? Why should palliative care and assisted dying not be available to patients who need and want it?
What do doctors and nurses think about assisted dying?
Universally, human beings want to avoid deathbed suffering unless they have been conditioned to embrace it as preparation for the afterlife.
So the question is: How can we avoid suffering? When it is found that even in the best of palliative care, 4 - 8 % of patients die in appalling suffering, it is time to take our heads out of the sand and do more.
Round the First World, professional medical bodies are examining their own role in perpetuating patient suffering through their blinkered opposition to assisted dying in the past. Some are considering shifting their former positions of hostility into those of neutrality at least.
In New Zealand, 37 percent of doctors support a change, and 67 percent of nurses support a change.
It’s time to start working on the safest possible legislation to bring relief to an unacceptable status quo.
Won’t the EOLC encourage teenagers to take their own lives?
Thank you to the young woman for sharing her confusion about assisted dying under the End of Life Choice Bill, and teen suicide prevention. However, I’d like to explain how and why assisted dying is very different from suicide.
The End of Life Choice Bill, if it’s passed, will be for terminally ill people who have less than 6 months to live, or who have a very serious incurable illness (for example, motor neuron disease) and who are already in an advanced state of decline and who are experiencing unbearable suffering that can’t be relieved. They have to be examined by two, sometimes three, doctors, and they must be mentally competent throughout. In addition, they’re encouraged to discuss their request with their family before they make their final decision, and they can change their minds right up to the last moment.
By contrast, young people take their own lives because they get overwhelmed by feelings they don’t know how to handle, and by life’s problems. These include bullying, friendship and relationship problems, gender and sexuality issues, pressures of study and finding work, alcohol and drug problems, money stresses, family issues, low self-esteem, mental health problems, and so on. Teenagers sometimes find it impossible to imagine a future beyond the black hole they’re in right now, and males especially find it hard to talk about their feelings. And because young people live in the present, they tend to be impulsive, so suicide can seem like a solution to their problems. But life is way too precious to be thrown away, and as a community, we owe it to our teens to give them all the help and support we possibly can.