When hope is all you have

The second certainty of existence (the other, notoriously, being taxation) continues to scare us, and as medical science increasingly helps keep the grim reaper at bay, most of us will be able to consider our departure from this world from a distance, if not quite at leisure.

End of life care, palliative care, the hospice movement – call it what you will – has become a growth area for the medical profession as more and more of us can be kept alive for the most part, free of pain and discomfort while we await the inevitable.

But in all its iterations, end of life care, as it now stands, seems to have something against that most powerful of human defences – hope.

My partner was diagnosed with a particularly virulent form of cancer in late 2016. She was told by a senior doctor in what seemed a quite offhand way. He advised her to put her affairs in order and undertake whatever travel she might like – and to do it sooner rather than later.

He would make an appointment for six months’ time. He also made it perfectly clear that he didn’t expect she would be attending.

In effect,  a healthy life-loving 54-year-old had just been give six months to live.

“Oh you may be one of the few lucky ones who get cured,” the doctor told her. “I’ll make an appointment in six months, but …”

The unfinished sentence said it all.

There wasn’t much to put in order, but we did some travel and determined to seek another opinion.

A senior Brisbane surgeon ordered scans and proceeded to surgery which confirmed what he thought – there was no sign of cancer. Further blood and tissue tests in the ensuing weeks told us the same.

In July 2017, my partner was declared free of this dreadful disease. There were celebrations.

The sobering truth, though, was that one of those physicians – both eminent in their field – had to be wrong. But which one was it?

Fast forward to October 2019. The cancer had returned with a vengeance.

Identified as gall bladder cancer, it is known to be rare and extremely aggressive with a five-year survival rate of around 7 per cent, although because of its rarity, data may be unreliable.

The chemo route showed that this cancer did shrink in response to treatment, and my partner seemed to deal with chemo better than most.  It was decided to repeat the process after an interval of about eight months.

Within 24 hours of the first session, she was seriously ill.

Thus began our first encounter with palliative care.

Emergency sent us straight to a medical ward where doctors and nurses tried everything they knew to locate and stop the source of the internal bleeding that was quite literally draining a woman’s life away.

Eight units of blood later they decided the task was hopeless.

“It’s like trying to fill a bucket with a hole in it,” said one doctor.

Blood was leaking into her gut and, well, from there it had to go somewhere.

Another young, earnest and very caring young doctor explained that this presented a difficult ethical dilemma. The Hippocratic Oath – which all doctors in my experience take extremely seriously – enjoins them first to do no harm.

He was, he explained, worried that if he could prevent her from dying now she would just go back to square one – and the process would be repeated all over again.

That was just fine with us, but he didn’t seem to get it.

Yet another doctor urged us to have an Advance Care Plan which basically tells doctors how a terminally ill patient wants to be treated when the end is in sight, which they clearly thought was the case.

“I’m not going to jump on your chest, possibly break a rib or two, and bring you back to face the same thing all over again,” he said.

Still another doctor came and said much the same.

Yes, but what happened to hope?

My partner was conscious and alert while this was being said but soon had another bleeding attack, this time even more severe. The doctor (another one) on duty at the time looked at her dismal blood pressure reading and shook his head.

“She needs to go to palliative care,” he said.

It was a shattering statement. I knew what palliative care meant. It’s where you go to die.

My partner received the last rites of the Catholic Church. I called our children who arrived from Sydney the next day to find their mother at a low ebb and close to death. Other family members were by now arriving too.

Then she sat up and asked if she could have a cup of tea.

Two teams of doctors were stunned. She had clearly not been expected to live. Within four days she was heading home, the palliative care staff lining the corridor, applauding and smiling.

Her two best friends came from Auckland and Sydney and we had a high old reunion that lasted several days. We had our new granddaughter home for Christmas and dared to hope (that word again) that this could be beaten.

But by early February this year, my partner was back in palliative care. This was the first of four more stays, the last, in May, being the shortest.

And in those final months while the children and I did all we could think of to keep her spirits up, we lost count of the number of times she was told: “You don’t have long”.

One doctor spoke fairly dismissively of “short term gains” which scientifically was probably justified. But we were all for short term gains – the more the better.

A nurse, when questioned about the build-up of fluid in my partner’s legs and feet, replied: “Oh, that’ll just stay like that now.”

She didn’t add “until the end” – but she didn’t have to. I wasn’t alone in starting to feel that there was a constant effort to squeeze all the hope out of her.

This is not a criticism of the palliative care staff who are outstanding people, but there was, for me at least, a detectable culture that made it clear you’re here for one reason only and we may as well get on with it.

Again, there’s no question of pointing fingers here. Doctors are scientifically trained to rely on facts to which many can add extensive experience. In my experience they are humane, conscientious and for the most part compassionate.

But death (like war and the generals) is probably too important to be left to the doctors.

As a society we have abrogated our responsibility to the terminally ill and shoved it all on to the shoulders of the medical profession who have clearly decided that honesty – occasionally even brutal honesty – is the best policy.

But doctors are above all human. They can and do make honest mistakes as all the medics I’ve ever met are among the first to admit.

But as far as I can tell there’s been little or no debate about the “you don’t have long” policy.

So, what so we want from our (seriously overworked and under-resourced) doctors and nurses?

Do we really want them to tell our dying loved ones lies?

Surely not.

But do we want them to crush hope?

There needs to be more open and honest debate among the public, the medical profession, the faithful and the atheists about just how we deal with the lead-up to life’s end.

The one size fits all approach leaves no room for hope – and it doesn’t seem to be working.

How can any medico go to work each day knowing not one of their patients is going to get better?

But that’s what palliative care staff are called on to do and it takes a very special kind of person to respond.

Doctors, nurses, kitchen, domestic and secretarial staff are all well aware of the condition of their patients.

That they manage to keep going is a source of amazement. That they do so with genuine and limitless compassion, professionalism and commitment is nothing short of incredible.

“You don’t get used to it,” one nurse said. “You don’t want to get used to it because then it would become routine and we can’t have that.  Everyone’s different, everyone’s special. We sometimes see them go home but know they’re coming back.

“Some are here for a matter of days or even hours while we get to know others. It’s hard not to form friendships and of course we grieve when we lose friends. But that’s the job. We want to maximise comfort and wellbeing while minimising pain.”

Minimising the physical pain is relatively straightforward given modern drugs and modern knowledge – but the mental side is much harder.

BUY THE NUMBERS

1 in 3 Australians have had a family member receive palliative care.

8 in 10 people sought help for grief after the death of a family member.

Only 1 in 10 Australians have nominated a person to make health care decision for them if they become too sick to speak for themselves.

palliativecare.org.au