The Right to Die at a Time of Our Own Choosing

I am aware some people may find this article confronting or disconcerting, so I caution readers to consider whether they are ready for this topic. If in doubt, perhaps revisit at a later date.

Western society in particular seems to have a very unrealistic approach to death. There is a tendency to avoid death at all costs. We have no choice about being born, at least grant us the dignity to control our end of life.

When I was about 12 I watched my grandmother spend the last years of her life bedridden and with dementia in a care facility. I thought this was a very sad ending to her life. When I was about 16, a partner in a local legal firm passed away at his desk, almost but not quite mid-conversation. By comparison to my grandmother’s suffering, I thought what a wonderful way to pass. He was doing what he loved, retained full mental capacity to the end, not a day in hospital. That was the sort of death I have envisaged for myself most of my life. I would be swimming or walking and the it would just happen. I suggest many of us do have similar thoughts, if we think about it at all in our younger years particularly. It is perhaps only when we have health challenges (which can be any age) or later in life that we think about the realities of what might happen.

In 2018 I read the best article I have ever read on this topic: The doctors who think it’s become too hard to die. It is a beautifully written article and while I do share some quotations herein, I highly recommend you read the article.

From the article linked above – Professor Hillman’s family experience

In some respects, this article has a connection to two other recent articles of mine.

In Victoria we have Voluntary Assisted Dying (VAD) legislation which was a wonderful innovation, long overdue, when introduced. HOWEVER it is very restrictive. The patient and ONLY the patient can request VAD at the time it is deemed appropriate. In addition the patient has to be terminal (within a specified timeframe) and experiencing unacceptable suffering.

You can only access the voluntary assisted dying medication if you meet the conditions set out in the law. These conditions are:

  1. You are in the late stages of an advanced disease and expected to die within weeks or months, but not more than six months (or 12 months if you have a neurodegenerative disease, such as motor neurone disease).
  2. You are experiencing suffering, which you consider unacceptable.
  3. You have the ability to make and communicate an informed decision about voluntary assisted dying.
  4. You are making a voluntary, continuing and fully informed decision about voluntary assisted dying.
  5. You are an adult, 18 years old or over.
  6. You are an Australian citizen or permanent resident.
  7. You live in Victoria and have lived in Victoria for the last 12 months.

If you do not think you will meet these conditions but are thinking about voluntary assisted dying, you can still discuss this with your doctor.

https://www.health.vic.gov.au/patient-care/do-i-meet-the-conditions-for-voluntary-assisted-dying

This means we cannot plan ahead. People, whether 100% healthy at the time or already patients, cannot put in place, in advance, instructions to be carried out under certain future circumstances. Our agency, our control of our own life, is denied us by social convention. Admittedly, people often don’t think of such circumstances in their younger years – it isn’t until the likelihood becomes apparent that any of us start thinking “what if….”.

The desire to keep sick people alive for as long as possible, he says, is reinforced by doctors who are “programmed to make you better”.

“Doctors hate saying, ‘I can’t do anything’. We’re curers, healers, miracle workers,” he says.

The outcome, he says, is that it’s hard for us to recognise when a life is better left to end.

https://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582

Interestingly, the above quotation was paraphrased unprompted by one of my own doctors when I was talking to her about the topic I cover in my Will Society Adapt? When? How? article. She emphasised the same sentiments re “curers, healers, miracle workers” and “programmed to make you better” expressed above. At what point does “first, do no harm” become contradicted by trying to prevent death? Well, you see, that phrase actually isn’t in the Hippocratic Oath at all. If I have tweaked your curiosity, visit https://www.health.harvard.edu/blog/first-do-no-harm-201510138421 at Harvard for a discussion on the topic.

If (as I have) we appoint a Medical Treatment Decision-Maker, that person can request the cessation of treatment on our behalf, but they cannot request intervention to proactively end life.

Any number of medical situations could arise where I might be suffering but ALSO be deemed cognitively incompetent. Another quote from the VAD link above: “This means that you cannot request it in an advance care directive, because voluntary assisted dying is not available to you once you have lost the ability to make a decision about it“. The very situation I personally fear most, that of lying in a hospital or aged care home bed in pain from my arthritic conditions AND with severe dementia, being kept alive merely so I am not dead, cannot be dealt with in a manner that allows me agency over my death. I find this horrifically cruel. I was quite surprised when a psychologist said to me “but you won’t know”. No, I might not (are we 100% sure of that?) but personally I would rather the costs and health care resources involved be used to help a person with a more favourable prognosis.

Many of us have a family history of dementia. I’m participating in a study at the moment which is looking at ways to slow or even prevent the onset of dementia, but being part of a study doesn’t mean I won’t ultimately develop a form of dementia. Studies have recently indicted that those of us with underlying chronic health conditions in middle age (oh, yay, lucky me) are two and a half times more likely to develop dementia. Another ramification of us being able to keep people living longer, as discussed in previous articles.

Having two or more chronic health problems in middle age more than doubles the risk of dementia, according to a study that researchers say underscores the importance of good health earlier in life.

https://www.theguardian.com/society/2022/feb/02/two-chronic-health-problems-middle-age-double-dementia-risk-multimorbidity-study

Other life events could leave any of us declared to no longer have decision-making capacity. I could have a car accident, I could fall and suffer brain damage. I could catch a virus that leaves me with brain damage (looking at you, Covid-19). It may not be dementia.

Yet should such a situation arise, we are trapped. Literally trapped. For many conditions, if treatment is withheld the conditions may become terminal quite quickly. For many other conditions, however, that is unlikely: we could be lying there for years because we do not have conditions that are terminal in and of themselves. Ceasing treatment may simply mean higher pain levels – I’ve already had a taste of that in I Sat in My Car and I Cried. I can only imagine how bad that could get.

The media has been alive lately with horrifying stories of the state of care in privately run aged care homes, yet clearly if I were in the state described above I would be unable to be cared for at home by my offspring (my daughter is only 24 years younger than I) or via My Aged Care. Nor would I want to be – I would want to be allowed to say my time has come, I’m leaving now. Irrespective of the quality of any aged care home (a topic for a future article), many of us don’t want to spend our final months or years in insufferable pain or other circumstances and unable to “check out”. I do understand that doctors would manage the pain, but that seems rather pointless doesn’t it? Just managing the pain with no prospect of any quality of life, just so I’m not dead.

Under NO circumstances would we have let a farm animal suffer in such a state when I was growing up on the farm. My father would have been horrified at the thought of putting any of his animals though such a situation. Yet humans are happy to force other humans to suffer, simply so we can say they aren’t dead.

I understand completely the ultimate decision can be painful for relatives and for the doctors. I believe this can be traced back to our culture’s unwillingness to accept the simple fact that there is nothing guaranteed the day we are born – other than the fact we will die. That is the cycle of life. Other cultures view death quite differently.

Allowing us to legally set out clear, concise instructions ahead of time would be the compassionate approach. Not everyone will make the same choices. A contact on Twitter related the case of their parents the other day. The mother wanted to go when she considered the time was right given her health state, yet the father wanted to do anything possible to extend his life. It is an individual choice.

Dr Corke says medical practitioners also need to be honest with patients and their families when certain interventions might be futile.

“We’ve come to a point where there’s always something more that we can do and we can never stop,” he says.

https://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582

Yes, there is always another medication we can try. Or another surgery. A friend of mine had pelvic exenteration surgery – this is very invasive surgery I have specifically stated in my Advanced Care Directive I will not have. That is my choice.

Even though I can’t currently ask for VAD ahead of time, I have done everything I can do to take the guess work out of my treatment, should such a time arise. I’ve expressly given examples of treatments I do not want. I’ve even mentioned VAD just in case the legislation changes. As the legislation currently stands, this is the best we can do. I hope, in time, we see more compassionate provisions in the legislation. We should be allowed to specify, well ahead of time, our choices.

There is a two episode documentary on ABC iView, Laura’s Choice, which you may find of interest and comfort. Laura travelled to Switzerland to avail herself of VAD.

Laura Henkel has decided she wants to end her life on her own terms, and describes why she has asked her daughter Cathy Henkel and granddaughter Sam Lara, both filmmakers, to make a film about it.

https://iview.abc.net.au/video/DC1917W001S00

I’ll leave you with Dr Corke’s empathetic words.

Photo credit M Bryson Photography

Hope for the Best, Plan for the Rest

While the Covid-19 variant Omicron may be clinically “mild” for many people (and the jury is still out on that), for some of the population it may not be. Many of us with chronic conditions may have conditions that make catching Covid-19, any variant, a riskier proposition for us. Talk to your general practitioner about your condition/(s) and your risks.

While Covid-19 is not the only driver for any of us to consider our legal documentation – it is particularly pertinent at this time and has certainly prompted me to get my affairs in order.

I am not a lawyer or a doctor: I am a rather experienced chronic illness patient. I am conversant with my risk profile. On that basis the last thing I want to do is leave my family with a medico/legal battle should I end up in difficulty. I want to make things as easy as I possibly can for those left to finalise my affairs.

While we don’t like to think of such things it is important to consider and prepare legal documents ahead of time. The links I am providing in this article relate to Victoria, Australia, however you will find similar in your location.

The details in this article are neither exhaustive nor comprehensive. This aim of this article is to list the documents that it may be appropriate to consider and information links.

Advanced Care Plan/Directive

This you organise with your doctor although lawyers will draft a document for you. Details can be found at advancecareplanning.org.au. Note there are differences between states. This is a document wherein you can detail your wishes about treatment under a range of possible medical or surgical situations.

Appointment of a Medical Decision Maker

Details of appointing a Medical Decision Maker can be found on the website of the Office of the Public Advocate. This can be in place of a Medical Power of Attorney.

You have the right to make your own medical treatment decisions.

However, if you experience an injury or illness that means you are unable to make decisions, either temporarily or permanently, If this happens to you, Victoria’s Medical Treatment Planning and Decisions Act 2016 specifies who has legal authority to make medical treatment decisions for you. This person is called your medical treatment decision maker.

You can choose your medical treatment decision maker by appointing someone to this role, providing you have decision-making capacity to do so.

https://www.publicadvocate.vic.gov.au/your-rights/your-healthcare/appointing-a-medical-treatment-decision-maker

Enduring Powers of Attorney for Financial, Medical Treatment & Personal Decisions

Details about Enduring Powers of Attorney can also be found on the Office of the Public Advocate.

These ensure that someone you trust can make decisions for you if and when you are unable to make decisions. Given the current studies around cognitive deficits and brain damage in Covid-19 patients, death is not the only concern.

Cognitive deficits in people who have recovered from COVID-19 is an article published by The Lancet.

The Mayo Clinic advises:

Although COVID-19 is seen as a disease that primarily affects the lungs, it can also damage many other organs, including the heart, kidneys and the brain. Organ damage may lead to health complications that linger after COVID-19 illness. 

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351

Voluntary Assisted Dying (Victoria)

Under current legislation in Victoria your appointed medical decision maker cannot request VAD on your behalf. The Victorian Government has a website detailing the legislation, Voluntary Assisted Dying. Note that this CANNOT be prepared in advance of any requirement. The criteria are very strict under the current legislation. I include it here only to highlight this is not something that can be prepared in advance, nor can you instruct your medical decision maker to request it, as that is not permitted.

Only you can start a discussion with your doctor or health practitioner about voluntary assisted dying. Your doctor or health practitioner cannot start the discussion. Your family member or friend can be with you when you ask about voluntary assisted dying, but they cannot ask for you. This helps to make sure your decision to seek voluntary assisted dying is voluntary.

https://www.health.vic.gov.au/patient-care/do-i-meet-the-conditions-for-voluntary-assisted-dying

Last Will & Testament

There are many available links. I have chosen the Australian Seniors Understanding a Last Will & Testament in Layman’s Terms as a the resource I am providing.

As many people remarry, please note the following:

Marrying (or remarrying) automatically cancels your Will, unless your Will clearly shows you were planning this marriage when you made it.

https://www.legalaid.vic.gov.au/find-legal-answers/wills-and-estates/changing-will

I mention that specifically because I had that exact discussion with friends of mine recently who actually couldn’t remember when they had made their last wills. Dying intestate is not a financially sensible option as there are fees for the state to administer the estate.

If someone dies without a will, they die intestate. Being intestate means that the laws of the state or territory they live in will decide how their estate is administered. An estate is made up of a person’s assets and liabilities.

https://www.statetrustees.com.au/executor-services/learn-more-about-executor-services/what-happens-if-someone-dies-without-a-will?gclid=Cj0KCQiA5aWOBhDMARIsAIXLlkcSG2I6utkyILW0VXnAdvm9SddjCIGePIRVIdnyUOT8-ltbXsxSJdQaArewEALw_wcB

Superannuation & Life Insurance

Superannuation and life insurance do not automatically form part of your estate. Superannuation particularly often requires a Binding Nomination form be submitted to the superannuation company and updated every three years (annoyingly).

I strongly suggest your check your specific situation with your life insurance and superannuation companies. The following is the HESTA website as an example.

It’s not the happiest subject – but it’s super important…who will get your super when you die? To be more certain it will go to the people you want, you can sign a binding death benefit nomination.

https://www.hesta.com.au/members/your-superannuation/accessing-your-super/binding-death-benefit-nominations

Take care, stay safe.

Edited to add: Since I wrote this article in December 2021, Four Corners have done a feature:

Some 50,000 Australians are currently under the control of Public Guardian and Trustee agencies around the country.

By law, these ‘clients’ are banned from speaking out about what happens to them, and journalists can be fined or jailed for reporting on them.

https://www.abc.net.au/4corners/state-control:-australians-trapped,-stripped-of/13795520

Although I alluded to this issue in the article above, I didn’t go into detail. If you have not seen this episode, I highly recommend you watch it.