The facts about End of Life Decisions

Death and dying are emotive and very personal topics.
There are divergent beliefs surrounding the meaning of our final human experience and thereafter.
A belief has no factual basis but a strong inner conviction about it’s truth.
However
There are many aspect regarding end of life care that are factual and not open to opposing beliefs.

The following facts are based on rigorous research and all references are available on request.


Fact : Palliative care cannot control all severe suffering at the end of life.
Good modern palliative care can reduce end of life suffering, but many symptoms associated with the physical demise brought on by a terminal illness have very limited medical management options.
For instance, nerve pain from compression by a tumor is very poorly treatable and can be agonising. Breathlessness is also very difficult to manage.
There are many other distressing symptoms that can not be managed medically, such as the loss of dignity associated with incontinence. Some people find this most humiliating. Or the increasing exhaustion related with all physical tasks, or the knowing that you are withering away slowly to become a shell of your former self. Some people find these existential symptoms intolerable.
A prominent Perth Palliative Care Specialist recently confirmed that advances in palliative care only cover some aspects of physical pain. This is backed up by many of her colleagues.
There have been no “Rapid Advances” in symptomatic management of a multitude of other very distressing symptoms associated with dying.
She admits to getting at least one request every week from a patient to help them to die. She wished she would be able to leave a blue pill on their bedside table ,so they can choose for their suffering to end.
She agrees with Professor Ian Maddox ,a Victorian palliative care specialist , that about 5 % of the patients she treats are still in severe distress despite all her efforts.
When asked what she prefers if she found herself in distress from a terminal condition she would opt for giving herself an overdose (medically assisted dying) as opposed to her current care options as she felt terminal sedation was too distressing for her loved ones,is not guaranteed to end suffering and can take days to weeks for death to occur from dehydration and starvation.(see account of this experience here)

Fact :  Medical practitioners are not best placed to make end of life decisions
Death and dying are not medical matters, they are a normal aspect of the human experience.
Every person has their own moral and belief structure around this issue and should be able to have a choice in what their dying experience should look like.
Most Western Australians (over 80%) want to be able to have control over where and when they die.
The days are long gone where doctors were an authority over death and dying.
Medical practitioners in our modern society are but one member of a patient-centred health care team.
In our free society we have autonomy over our beliefs, moral values and health care decisions.
The health care team is guided by each patient’s values in all health care decisions. How we chooseto die should be no different.
A patient with decision-making capacity does not share decision-making authority with treating health professionals. Rather, the treating team acts in an advisory capacity to the patient enabling him or her to make choices regarding reasonable treatment options.
As illustrated recently by the attempted prosecution of Perth GP Dr Alida Lancee, there is a real threat of a murder charge for a health care professional under the current law.
There is no concrete difference between the current practice of terminal sedation and legally
assisted dying, except terminal sedation is much slower and not guaranteed to end suffering.
Assisted dying is illegal unless one can prove in a law court that the intent was to relief suffering and that the doctrine of “double effect” was applicable. A very grey area indeed.
Most doctors do not wish to have to defend themselves in court and face possible life jail time for murder.
This is a huge problem for dying patients in distress as many doctors are not brave enough to risk their freedom to give patients adequate relief of symptoms if it may also seem to hasten their death.
This leaves terminally ill patients vulnerable to the personal stance of their doctor.
Some doctors will help, risking legal ramifications (polls of medical practitioners have indicate that up to 25% of doctors have given patients deliberately life shortening treatment at their patients request)
Some will not help, leaving some patients to die a slow painful death.
Currently there are no safeguards, no transparency and no uniformity in medical end of life care.


Fact : Palliative care funding and research does not reduce when assisted dying becomes legal.
There is good evidence that the opposite is true.
Oregon has had legislation for medically assisted dying for the past 20+years.
They have kept detailed data about the availability and quality of hospice palliative care since the introduction of this law.
In Oregon 90 % of people dying with medical assistance are enrolled in Hospice care program.
This compares to only 45% people dying in the whole of USA.
Comparative analysis of Quality of palliative care improvement across EU countries over the past decade has shown that Belgium and the Netherlands are on par with their EU counterparts who do not have assisted dying laws.
In Western Australia we will be promoting increased funding into community palliative care to allow people to die in their local community with expert palliative care. There will also be education and promotion of Advanced care plans to avoid futile medical intervention in the last 6 months of life.
The proposed Freedom of Choice at the End of Life Bill will be but one aspect of improving the dying experience of Western Australians.


Fact : Legalising assisted dying for the terminally ill does not lead to expansion of legal assisted dying for non dying persons
Oregon has had an assisted dying law specifically for the terminally ill for two decades.
The percentage of deaths attributed to assisted dying have remained stable over the past 20 years in Oregon and other US states at less than 0.5% of all deaths. There has not been a public demand nor attempt to expand these laws to include those who are not dying .
The laws in the Netherlands and Belgium do not specify that the person should be terminally ill to qualify, but rather that they have unbearable suffering. A very different legislation to what is proposed for Western Australia.
The proposal for the WA Bill will specify that the person is terminally ill with a limited prognosis to be eligible.

Fact : Assisted dying legislation does not lead to increased risk of suicide
The message with the proposed legislation is one of choice for the dying. This allows someone with a terminal illness to have the security in knowing they have control over their dying process and opt to die quickly rather than slowly.
Currently too many terminally ill people attempt to kill themselves in order to have this control,
often in very violent, lonely and distressing ways.
These people are not suicidal and do not want to die, they are suffering because their bodies are dying.
This is totally unrelated to depression related suicide where a person rejects life through a mental illness.

Fact : The majority of Australian Medical Practitioners support an assisted dying law
A survey in October 2016 showed that 65% on Australian medical practitioners support assisted dying law for patients with a terminal illness.
Over 50% would agree to participate in the process to allow a suffering patient to die quickly rather that slowly should they request this.
The Western Australian proposal may include the establishment of and End of Life Service which would provide education for health care practitioners in symptomatic care for the dying (palliative care) as well as training for practitioners who are willing to assist patients in dying. This ensures that good palliative management remains absolute first line and an integral part of the care of the dying and that assisted dying is an extension of this care for a small number where symptomatic care is not sufficient.
Any doctor who does not wish to be involved can refer to doctors in this service at the patients request.


Fact : End of Life Choice legislation with safeguards is achievable
A carefully drafted workable legislation is possible to both give choice to people who are dying and protect people from possible mis-use of such law.
The Oregon law mandates reporting to a review committee by both doctors involved. There have been no cases where these doctors were found to be breaking the law.
Statistics in that state indicate that the majority (around 80%) of assisted deaths have involved people dying from cancer and this has remained stable over 20 years.
There is no evidence that people with disability, mental illness, or the very elderly have become vulnerable as a result of this law.
The proposed Bill in Western Australia may mandate that two independent doctors report to a panel of experts from medial and legal professions.
This extra safeguard will ensure that the patient has received an appropriate prognosis, has received optimal palliative care and is eligible.
Furthermore, strict safeguards will be in place to avoid the unlikely event that a person requests aid in dying after coercion of a third party. There is evidence from jurisdictions where assisted dying is legal that death is brought forward an average of 2 weeks. Hardly a reason to coerce someone to request aid in dying. There is no evidence that the currently legal choice of refusing treatment has been the result of coercion by a third party.

The opposite is happening in many cases wheredying people are coerced into futile medical interventions which only prolongs their suffering . It is time to let go of those who are ready to go.


With these FACTS we can have an honest debate to work towards solving a problem in our society where too many of us will die a slow agonising death.
Ignoring these facts will not make this problem go away.
*) references for statistics or reports available on request