Debra Hall - A good life, and a good death

  • February 10, 2016

All I want is a future where we can truly celebrate that our parents, our friends and, eventually, ourselves had not only a good life, but a good death.

This is my story of three undignified deaths, from my submission to the Select Committee.

This is my submission to the Parliamentary Health Select Committee, currently considering a petition to change the law in New Zealand to support ‘physician assisted suicide’, or, as I prefer to term it, giving people choices at the end of their lives.

This is a personal story – please do not read it if you think you may be upset or offended.  It is my view, and only my view, of three undignified deaths in my close family in recent years.  To other family members – I truly recognise that your experiences of these deaths are different from mine, and that you may feel that these are not my stories to tell.  Everyone involved has their own perspective – this is mine, respecting that you almost certainly have a different view, and irrespective of that, mostly importantly, celebrating that we all, each one of us, cared very deeply.

So here is my plea to the legislators – exhorting them to lead, not follow, to a better more compassionate society.

The San people – the ‘tangata whenua’ of Southern Africa – have a way of dealing with dying.  A nomadic people in a harsh and unforgiving land, it is said that the final gift that the elder gives to the tribe is to sit, simply sit by the wayside, as the tribe moves on.  The choosing to die – a decision made while still in control.  I reflect on this, as I recount the story of these three undignified deaths, and make a heartfelt plea for a more compassionate society.

“One day, you will wake up and the pain will be gone – you will only have the good memories of your Dad”.  Wise words from a good friend, thank you Mark.

The pain he spoke of was not, I have realised, Dad’s pain – a pain that had thankfully already passed – but the painful memories not just of having to stand by and watch Dad’s pain and indignity, but most of all the pain of being helpless to deal with my mother’s pain.

Was it not enough that she had to experience the loss of her spouse of 53 years, her life’s companion?  As she stood by, riddled with her own physical disabilities – unable to assist in the increasingly physical task of caring for her beloved – her distress was palpable, her feeling that she was somehow letting him down by allowing sometimes family members, sometimes complete strangers to witness his indignities.

“I guess when you got on the plane (from London), you didn’t realise you were signing up for this”, Dad retaining his sense of humour as his 20-something grandson assisted in dealing with his soiled bottom, trying desperately to cause no further pain while wiping around the open wounds of bedsores and nappy-burn.

Deric, my Dad, had a good life – he told me so at our last lunch.  I’d persuaded him to come out with me one last time, in part to give Mum a moment alone.  We went to his favourite café, ordered his favourite chicken livers – not that he could each much of them.  We talked, finally, about his life.

Five months earlier his doctor had given him the news – liver cancer, probably secondaries, prognosis 5 to 6 months.  This was not Dad’s first brush with cancer.

Nearly a decade earlier, face / mouth cancer had led to major reconstructive surgery, surgery that left him disfigured (though those around him soon stopped noticing).  Then in his late 60s, he had had much to live for.  The first surgeon’s advice, that nothing could be done, was firmly rejected.  He was going to fight this, and he did.  The wonderful team at Auckland Hospital gave him a whole new cheek, and the even bigger gift of living to see his granddaughter married, and great-granddaughter born.  He adored baby Isabel with every fibre of his being, and she, now , still talks about her beloved “Dumpy”, even though he didn’t make it to her second birthday.

But now in his late seventies, he was ready to go – if one is ever ready.  His main concern was for my mother, who had never known what it was to live life alone.

I know my story is not unique, and in fact, there are many families less-equipped than ours to deal with this.  We did not have to worry about the financials of it all;  we had knowledge and education on our side, and a strong network of family and friends to lean on, despite being immigrants to New Zealand.  “South African by birth, Kiwi by choice” my mother has always said.  How much harder must this be for families battling poverty, families unable to have an ‘equal’ conversation with doctors, families who simply don’t understand the system (or even the language)?

Yet, as the oldest child, only daughter, and only child living in Auckland where my parents were, I nevertheless felt the massive weight of it all on my back.  With no time to process my own grief, I grasped for the one thing that I could do that I felt would make a difference for Dad – I knew that he desperately wanted to stay at home to die.  My mother, on the other hand, regularly asked when he would be going to hospital…  in her paradigm, hospital is where people go to die.  The idea of having a dead body in the house was just not something she could get her head around.

I am eternally grateful to Hospice – for everything that they did – but particularly for enabling me to have ‘that’ conversation with Mum.  I signed up for their ‘carer support’ programme – a weekly gathering focused on giving carers the practical tools – I invited Mum along, and she was not keen, but eventually agreed to go.  It helped to feel like we were prepared, but most of all, it helped to talk.

They also taught me to administer morphine through the injecting site that would ultimately be ‘installed’ in Dad’s shoulder as he became unable to swallow anything.  Don’t be cautious, they said – anytime he appears in distress, give him another vial.  I wondered if there was an unspoken message there.

But sadly no, when we were truly near the end – the endless sitting around waiting for death, hoping and praying for death – I took to Dr Google, looking up whether I could, in fact, change the course by administering the full supply in one go.  But no, there was simply not enough.

And so, I guess, that tells you which side of the debate I am on.  If I had had the provisions to administer that final dose, I would indeed have done it – not just for Dad, but for all of us.  Those final 48 hours were interminable – and to my eternal regret, when I could function no longer and went home to sleep, Dad finally took his last breath, with no one at his side.

My question is “why”.

“It takes time” the doctor said.  “His body is shutting down, you need to give it time to do that”.  But why?  It’s not like we were going to start it up again, and had to make sure it was ‘properly’ shut down!  Why couldn’t we just press the “off” button?

Let me be clear.  Dad was definitely dying.  There was no treatment, no cure, just the watching and waiting.  There was pain – not just for Dad (I guess, he’d say at least he had the morphine!), but for all of us, dealing not only with our own personal pain, but with the pain of the living, those who we care deeply about.  Having said his goodbyes, why was my dear Dad not allowed to simply fade into the deep goodnight, with his loved ones at his side?

I have reflected on the choices he might have made in a more compassionate society.  In Oregon, his doctor would have talked to him about “the prescription”.  He would probably have agreed to have the drugs available – whether he would have taken them himself, I do not know.  He certainly would not have taken them immediately following his diagnosis.  He seems truly content to have the time to ‘get his affairs in order’, the time to talk with Mum about the choices she would make when he was gone.

But the reassurance of knowing that he could end it if he wanted to, would, I believe, have made those last lucid weeks considerably less fearful.  It’s about having choices – choices for everyone, the choice to take control.

And yes, five years on, the pain of those days is faded, though I see it occasionally in my mother’s eyes.  It comes back with force when we are again faced with the same issues, the same choices, as we have been twice since then, with the passing of my husband’s two parents.

Each story is uniquely different.  Each would have had its own prognosis in a world where people have a choice of dying with dignity.

My husband’s mother, June, was crystal clear in her wishes.  Through all my nearly 40 years of knowing her, I knew that she was pro-euthanasia.  In a time where it was a mostly taboo, certainly seldom discussed topic, she managed to make it clear to all around her – not just her 3 children – that when she got the dementia (Alzheimers that runs in her family), she would, as she put it, jump off the nearest bridge.  This was not a flippant comment – it was a clear plan.  In the end, in one of her very last lucid moments before her brain died without having the decency to take her body along with it – she told her son that she simply didn’t have the courage to do it, that she could not bear the thought of her husband of 60 years having to find her body.

As it turned out, they were both spared the pain of seeing each other die.  That pain fell to the three children, all desperately devoted to doing the right thing for their two parents.

Sid, their father, surprisingly went first.  In one of those ridiculously trivial incidents that grew and grew, an ingrown toenail became an infected foot, that led to hospital, not once but several times.  Surgery to try to improve the circulation – for without blood supply, amputation was inevitable – ultimately unsuccessful.  A discharge from hospital into our home – all the while, him insisting that he was going back home to his little house in the retirement village.  We knew that was never happening, but humoured him, as we set in place a roster of full time nursing care.

Unlike his wife, Sid had never expressed his wishes about end of life care.  Even as he was wheeled into surgery that last time, when the medical team asked if he had a non-resuscitation order in place, or what his wishes were, he pronounced that he knew his “family will make the right decision at the time”.  This was, of course, not helpful – but it was his wish, that he didn’t want to think or especially to talk about end of life matters, and we respected that.

So we fell into a charade – knowing that he had rejected amputation, knowing that he would ultimately die of blood poisoning, taking the decision (on his behalf) to go without antibiotics that would prolong that process…  and all the while playing along with his demands to prepare for returning him to his home.

His pain was real, very real – and seemingly much harder to control.  His children argued about how to manage it, each, under stress, reverting to their childhood pecking-order.  The oldest taking charge, the youngest feeling ignored, the middle child feeling like, well, the middle child – the daughters trying desperately to care not only for their Dad, but for each other, for their brother…  their respective spouses standing at their sides, trying (and failing) to be supportive without interfering.

It was long, it was horrible.  Even when, finally, everyone agreed that the end was in sight and there was a space in the hospice facility, it remained seemingly impossible to relieve the poor man of his pain.  United in their love of their father, the three siblings pretty much moved in to the hospice room…  again, the days of waiting, the days of questioning why.

As a family of dog-lovers, we have all had the sad but inevitable moment when we make the decision about that trip to the vet – the moment of standing at your faithful companion’s side, stroking his head as the vet takes away his pain forever, the relief of knowing the suffering is over.  Perhaps we should have raised one of our own children to become a vet!

And so finally, we buried Sid.  The level of stress on family relationships at an all-time high, some just wanting it all to be over, a fitting send-off in retrospect, perhaps not fully appreciated at the time.  The final argument – should June be told, should she come to the funeral?  Is it right to withhold the news of her husband’s death from a loyal wife?  By then, her dementia was well advanced, and so the wisdom of her wonderful carers prevailed.  She never knew that Sid was gone – though from time to time, we would find her in a chair by the door, just sitting, waiting for “the man” to come visit.

My husband and I travelled a few weeks later to London, where the three grandchildren who had not been able to attend the funeral, along with an assortment of friends from his past, gathered for a memorial service.  Finally, away from the stress, we truly celebrated Sid’s life.

Meanwhile, it seemed the June’s body would just live on and on.  Always a fit person, the stress-free environment of the wonderful Awanui Rest Home (a dedicated dementia care facility) had seen her health actually improve, despite the withdrawal of supposedly necessary medications.

Unlike Deric and Sid, June had signed not one, but three separate directives about her wishes, including one which was crystal clear that she did not wish to live with dementia, and that all ‘life-saving’ medication and treatments were to be withdrawn if she could no longer care for herself.  Her children took her at her word, and once she was admitted into full time dementia care, somehow prevailed upon the medical people to stop all medication apart from pain relief where necessary.  This included blood pressure medication that she had been taking for decades – thereby, the medical advice said, dramatically increasing her likelihood of having a major life-threatening stroke.  Well, that’s exactly her intent, we said – that medication is reducing her chances of dying, it is technically therefore ‘life-saving’…  difficult decisions.

That was just the foretaste of difficult decisions to come.  The thing about end of life decisions is that everyone has the best intentions.  The family (at least in our case) wanted what was best for June, which we interpreted as honouring her very clear instructions while ensuring that she was not in pain or suffering at any stage.  Her carers at Awanui moved mountains to try to keep her in their care, where we all knew she was, if not happy, at least wonderfully content.  The doctors and nurses also wanted the best for her – healing of her hip (broken three times in short succession), “hospital care” which Awanui was not ‘qualified’ to offer (despite us offering to pay for full time nursing support).

It is in the nature of the Alzheimers condition that change causes distress.  We were fortunate – in a way – that having worked for many years in a hospital setting, June felt quite at home in a large hospital ward, but transferring her to a new and foreign place would, we knew, distress her enormously.  Her children dug in, at a time when they should have been supporting her and each other in their distress, they were instead trading ‘blows’ with the system, about threats of legal action to protect June’s “rights” from poor decisions made by her children.  A compromise was reached – hospital care in a small ‘non-dementia-ready’ facility, who only accepted her because she was bed-ridden and therefore not bringing along all the associated ‘wandering’ behaviours of the classic dementia sufferer.

In a private room, with only the television for company, June clearly decided – somewhere in the recesses of her addled brain – that enough was enough.  She simply stopped eating.  Who knows how much pain she endured from hunger pangs and dehydration, but ultimately, somehow against the odds, she did take back some control of her life in the end, and decided to die.  It is a tribute to her three children that they supported her through this, sitting by her side.  My husband said that he had already mourned her passing – his mother had died several years earlier to him, for without her wonderful brain she was no longer Mum – but nevertheless it was hard.

At June’s funeral, there was one thought I could not get out of my head.  We simply do not have a word in the English language that expresses the thought that surely was on the minds of most of our friends and family – yes, we are sad that your mother has passed, and yet we are just so glad for her and for you that her suffering is finally at an end, so no, we are not “sorry for your loss” at all!  Perhaps, in our generation, we will invent a word for that.

Through Sid and June’s dying, I stood by in admiration at the dogged determination, determination borne from true love, that their three children showed, despite their disagreements.  Their solid commitment to do the right thing for each of their parents, despite the obstacles that the ‘system’ threw into their path was admirable beyond description.  We should all pray that our own children show the same resolve.

For June, the answer is very clear – had she been given the option for ‘assisted suicide’, had it been part of the accepted mores of our society, she would definitely have done it.  Losing control of her life was the thing she feared most, and every time we reflected on her life at Awanui (incredible as the staff and the place are), we had to sadly admit that she would not have wanted to live like that.

Ironically, of the three, she is the one least likely to have been helped by the proposed changes to the legislation.  Dementia – possibly the biggest societal challenge posed by our aging population – is not, not technically anyway, a terminal disease.  There would not have been any conversation about an assisted departure for June, despite her fervent resolve.

And so we gather as a family, and we regularly talk about what’s next.  How will our generation deal with these issues?  How will we spare our children, and our spouses, the pain that we have endured, the pain that continues to shape our relationships with each other?

Is the solution a one way first class ticket to a clinic in Switzerland, as one suggested, accompanied by the daughter we know will support the decision, with the rest of the family not knowing until it is too late?

Is the solution a deliberate drive off a cliff, glass of champagne in hand?

Is it stockpiling medication in the hope that enough will be available when the time comes?  And more importantly, that we will not wait too long, not wait until we have forgotten what the pills are for!

These are real suggestions, made by real people, real New Zealanders (well, Kiwis by choice, anyway), who have attended to the undignified dying of three parents in the past few years.  Real people making their own plans, because they know that the law is not on their side.  Real people, looking at places like Oregon, where the evidence shows that taking a more pragmatic, more compassionate approach to dying does not, in fact, result in a huge swarm of suicides.  Rather, it gives people control, gives them choices and enables them to live out their last days with less fear of the unknown, in the knowledge that they have that control.

That is all we are asking of our legislators.  Compassion.

Compassion to enable dying people to take control, to make their own choices.  Yes, we are all dying, a little each day;  but as the end becomes inexorably closer, we want the ability to choose.  To choose not just how we ‘manage’ our own pain, but more importantly perhaps, to choose the time and way of our passing.  To choose to have our loving family around us, without them having to endure their own journey of pain to get there – for that is the pain that does not pass.

Yes, I am mostly now at a point where I remember only the good memories of my Dad.  But the thing that will never pass is my own pain, the pain of my powerlessness to deal with my mother’s and brother’s pain at their helplessness.  All I want is a future where we can truly celebrate that our parents, our friends, and eventually ourselves, had not only a good life, but a good death.

Thank you for reading my story.  This is a complicated issue, and one which I truly believe is worthy of all our efforts.  It is a mark of a civilised society that we treat our elderly with respect and dignity, and a law change supporting giving people back control at the end of life will, I believe, make us a more civilised, more compassionate society.