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.

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.

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 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.

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.

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.

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

Photo credit M Bryson Photography

Will Society Adapt? When? How?

Just over 2 years ago, October 2019, I wrote Society and Chronic Health Conditions. In that article I proposed that as a species we understand three states of health: terminal, curable and healthy. I suggested we are not yet accepting the new, fourth state: chronic illness.

In talking about this situation with a friend recently, I realised my generation is effectively the first generation of this new health state. No wonder we are struggling as a species to adapt. It is all so new. Historically most of us would have died or been cured: there was very little “in-between”. Now we have that in-between, but the powers that be don’t like it. Because that in-between costs money. It doesn’t fit the capitalist dynamic. We are not the only generation: my children are now in their forties and many conditions are not age specific. We are just the first of any number due to scientific advances.

There are many factors at play here. More advanced science. Longer life expectancy. Horrifically rapid population growth (see graph further down) over the last century. Now we are being told by certain theorists we need to increase the birth rate to support society, while that will further degrade our environment. It will also increase the number of people requiring some form of assistance and support. I’m not looking at environmental impacts in this article, but it is something that impacts all of us because chemicals and damage to the environment may well be contributing to health issues in a broader sense. There are many reference and source links (underlined or blue, depending on your device) in this article, so be warned! (Edited 23/01/2022 Since writing this I have looked at environmental impacts in Underlying Conditions)

Science and medicine have advanced in leaps and bounds in the last 100 years particularly. People who would have died 100, 200, 300 or more years ago now can be saved by medical or surgical intervention. We may live the remainder of our lives physically disabled (for example in a wheelchair after a car accident) or we may live with a chronic condition (or conditions) as I do, those conditions held in check or managed by modern medications.

Not only has medicine and surgery advanced, it has improved. Let’s look at knee replacement (because I’ve had one of them, so have patient experience). The first Total Knee Replacement was performed as recently as 1968, believe it or not. However, a German surgeon began the journey when he implanted primitive hinge joints made of ivory in 1860. My knee is titanium, a far cry from ivory.

Medications have been developed and are continuously advancing. Biologics have seen expansive growth since human recombinant insulin was approved in 1982.

As a result of these innovations, developments and advancements the reality is we NOW have more and more people living life with permanent (chronic) health complications than ever before in human history. I’m not terminal: neither am I curable. Thousands of people are in the same situation and the number, the percentage of the population, is growing. in 2017-18, 47% of Australians had one or more of only 10 selected chronic conditions.

Generally incurable and ongoing, chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of this country. By 2020, that number is projected to grow to an estimated 157 million, with 81 million having multiple conditions.

Source: About Chronic Diseases

The reality is we often reach the point of needing some form of support to live at some stage of our life. In Australia there has been much discussion of late about the Disability Support Pension (DSP) and the National Disability Insurance Scheme (NDIS). People are being rejected or having their support budgets reduced/cut.

The government complains it is just too expensive to provide the supports and pensions. I could suggest if there was less pork barrelling going on there would be more money available, but I digress.

The population of the world has grown from 1.65 billion in 1900 to 7.7 billion in 2019. More than 40% in at least two countries have chronic health conditions – I haven’t been able to source a global figure, but suggest it would be similar.

So what did humans think was going to happen? That the disabled and chronically ill could live on air and water? Many of us are like me, still working, paying our own way, essentially looking after ourselves – for the moment. Even for us, our conditions are often degenerative and progressive: our self-sufficiency may have a time limit. Or the conditions can be decidedly unpredictable: good one day, unable to function the next. Not only that, some of our treatments are not cheap. Government’s choice, society’s choice, is either fund the expensive treatments that keep us as healthy as possible, or look after us when we deteriorate on cheaper but less effective medications.

Or adopt the American style health system where only the rich can afford the good treatments.

‘Profit over death’: millions of American diabetics struggle to afford insulin

I’ll never forget the case of the the 51 year-old who won the lottery so could finally afford to go to the doctor. He died.

Among his other priorities, Savastano, who couldn’t afford life insurance before the winnings and hadn’t been feeling well, wanted to visit a doctor, the station reported.

Even here in Australia where we have the Pharmaceutical Benefits Scheme whereby the government subsidises expensive medications like biologics, we limit who can have access by stringent qualification criteria. While jumping through the hoops required to qualify, the patient may deteriorate badly. An argument can be made that this policy is false economy as the costs of care over time may well outweigh the costs of treatment with better medications. The rich can afford private prescriptions.

As a species we could decide we don’t want to have this new health state of chronic and tell medical science to stop researching, developing and advancing because we just can’t afford the result.

We could accept that only the rich can afford treatments.

We can hope ultimately we will develop cures for these pesky conditions, but what do we do in the meantime?

Or we can adapt as a species. We can accept this fourth health state, chronic, as NORMAL. As normal as the existing states of less-than-healthy of terminal and curable that we have lived with for as long as we have existed as a species. We can find ways to support our people. Accept our new normal.

We’ve made advances with accessibility: ramps for wheelchairs, sounds on pedestrian crossings for the blind, special seats available on public transport. We haven’t really advanced re financial support. I’m not going to quote current federal ministers’ statements on the DSP and NDIS – most of us know their perspective.

The 65-year-old was told last year that her cancer had spread and she had two years to live. “You can imagine the shock,” she says. “Even now, I feel quite well, but the minute I’m physically doing a lot, you can feel the tiredness coming to your body. It’s nothing to do with, ‘I can’t be bothered.’ It’s just your body. You just feel weary. “I said to my son, ‘How could I be expected to do a full-time job? There’s no way.’” Yet it was only with this diagnosis that Penfold’s hospital social worker felt she had a genuine chance of accessing the disability support pension, the primary welfare payment for those unable to work.

Governments tell the voters we are “a burden”. The government fear the ever increasing numbers. While I have every confidence science will in time develop many cures, that’s not the situation at this time. Society needs to adapt. One way or the other, we patients need to know where we stand, we need clarity.

I joke that I work to pay my doctors to keep me well enough to work to pay my doctors. Many of us are in the same boat. The fear that one morning we will wake up and our treatment will have stopped working (it happens) or the condition/(s) have suddenly progressed to the point where the pain is too much to work is very real. Where will we live? In 2019, there were 148,500 households on the waiting list for public housing, down from 154,600 in 2014. That’s households, so way more people. I have heard it is now 155,000 households. Yet if we can’t work, we can’t pay private rent, let alone pay for our medications and the other costs of managing chronic conditions. We don’t own our own home? Well, that was very badly planned by us, wasn’t it – back to us being a burden. Even if we do own our own home, we may not be able to manage it. What if we are in our twenties, no time yet to build a nest egg or have bought a home?

Look at the population numbers again. Not everyone in the world can be a millionaire or billionaire. Oh, we want workers and customers and taxpayers and plenty of them – we just don’t want to have to care for any of them if they aren’t terminal or curable.

For example, although I work, I can’t change my bed linen or clean my shower recess. I have My Aged Care (which I pay for). No NDIS? Well, no, you see, because like many of us, I failed the test of my condition being stabilised or completely treated. I will be dead before I could realistically exhaust all the available possible treatments. My condition is notoriously unstable. I am not alone! I’m merely using myself as an example because I have intimate knowledge of the details of my own case.

As if all this wasn’t enough, we are excluded from Voluntary Assisted Dying (VAD) legislation (because we are never terminal) and now we have the organisations like the ACL fighting VAD:

The current conservative government in Australia needs to go to the polls openly with the policy they really seem to want: to essentially minimise or remove both the DSP and NDIS. Would they actually prefer the ever increasing number of chronically ill people in the population just be put down? Like dogs or cats or horses. Of course, that conflicts with their aversion to VAD. They can’t have it both ways. What is their plan? Do they have policies? I doubt it.

As I have stated before, I don’t like the term “chronically ill” because of the inference of the word “ill”.

I am not ill in the sense I am not able to live a relatively normal life. I’m not confined to bed, I’m not in hospital, I’m not on a drip: I’m still driving, swimming, working. I have chronic conditions I must MANAGE, I can never stop managing those conditions, but I am not ILL in the sense of the common usage of the word. I stress the difference between common use and medical use of the word ill.

As a species, as a society, humans MUST determine a humane solution to this problem. As I wrote at the top of this article, there are many factors involved here: environment, population growth, advanced science, advanced medicine and of course the greatest god of all, The Economy.

While I am not suggesting society can afford to provide 24 hour home care for every chronically unwell person, I am saying we need innovation here. There may be solutions no-one has thought of yet. While my generation is the first in any great number, there are the generations after us. This social conundrum is NOT going to disappear. It is going to get worse before it gets better.

Society needs to adapt. Don’t throw us away, for we are your lab rats in this period of history. Future generations will benefit as science develops and perfects treatments and hopefully cures.