NEW ZEALAND
Saturday December 2,
2006
Dying with Dignity in NZ
The NZ Herald reports:
Making their own decisions can be a great consolation to patients.
Doctors have been gathering at Middlemore Hospital in South Auckland
this week to talk about death.
It is a subject they would like us all to talk about but at the
same time they are nervous about what might appear in the newspaper.
They fear a backlash. Deciding when to let people live and when
to let them die is a sensitive business. But doctors have to deal
with it and they say we should all think about it.
Take the case of a frail elderly woman who lived in a resthome.
She had severe dementia. She had to be secured to be taken by
ambulance for her visits to hospital, where she needed dialysis
for three to four hours at a time. She didn't know where she was.
It was a miserable life.
This is a real case. If she'd had any way of knowing what was
to come, the woman might have said she would not want to have
any treatment.
It is not just the elderly who need to talk about death, the
doctors say. There are those who may be younger yet will develop
chronic illnesses, or those who are destined to be hit by a bus
and become brain-dead, or have brain damage of such severity that
life would become an ordeal. They might want to die but have relatives
who desperately want them alive.
The doctors and specialists in South Auckland are not ghouls
who want to end the lives of the very ill. They are respiratory
specialists, renal specialists, intensive-care specialists, grief
specialists, palliative-care specialists. They are the people
you want around should the worst happen.
Money is an issue, but not the main issue, they say. About 70
per cent of the health budget is spent on the last two years of
life. It's a lot of money and it means that sometimes other people,
perhaps a young mother with two little girls (another real case)
who may need drugs or treatment, will not get them.
Mainly, though, it is about quality of life. Addressing the doctors
at Middlemore was Australian intensive-care specialist William
Silvester, invited by Middlemore's clinical head of medicine,
Jeff Garrett, to talk about the system Silvester has instigated
in Victoria.
His programme, Respecting Patient Choices, is already running
in eight hospitals in the state. Funded by the Federal Government,
it will be piloted in every state and territory in the country.
As an intensive-care specialist, Silvester had become concerned
about the number of patients being treated in such a way that
if they had been able to tell doctors their wishes, they may have
rejected treatment. His programme is about what doctors call advance-care
planning, where people choose different options about what they
might want in the future.
The programme is running in hospitals and in resthomes - and
in the resthomes there has been a big reduction in the number
of patients being inappropriately transferred to hospital to die,
Silvester says.
"They're being kept comfortable in the nursing home. They
have their family and friends at the bedside and they're allowed
to die with dignity and peacefully instead of being transferred
to hospital, where they might end up dying on the emergency department
trolley while they are waiting for a bed on the ward, or up in
the ward being cared for by people who don't know them."
Silvester says the resthome residents think it is fantastic that
someone has bothered to talk to them about these matters, because
often the elderly in such places feel disempowered and ignored.
"They indicate whether they want to be going to hospital
if they deteriorate. They indicate whether they want palliative
care or to be aggressively managed. They indicate a lot of personal
things.
"They say, 'When I'm dying please leave the curtains open
because I don't like the claustrophobia of the curtains being
around the bed'. Or they might write, 'Please when I'm dying I'd
like to have a vase with irises because it's my favourite flower'.
"Or they might write they want country-and-western music
playing, and they'll often say they want a particular priest or
minister to come, or they might want rosary beads in their hand,
or they might want a penny in each hand for the ferryman.
"So for each of them, it's very personal and intimate response
- and that's fantastic."
Families find the discussion helpful. Bringing up death is not
easy. Sometimes they fear staff will interpret it as their wanting
to pull the plug on mum or dad when really they just want to care
for them in the best way.
Silvester says that as yet he has not looked at whether money
is being saved, partly because the programme can be portrayed
as a government-sponsored way to save money. This is not what
it is about, he says. "We're finding, paradoxically, it's
protecting the vulnerable because they're being given an opportunity
to say what they do and don't want under circumstances where they
are normally not even asked at all."
Respiratory specialist Jeff Garrett would like to have a pilot
programme at Middlemore but says he is not yet sure exactly what
is required. But on ward rounds he often sees people who are inappropriately
treated and who, given all the information on what they can expect,
would prefer to die with dignity. Patients in New Zealand with
a wide range of chronic medical conditions are not managed as
well as they could be or should be, he says.
Garrett talks about one of the best deaths he has witnessed.
A mother in her late 30s who had respiratory failure came forward
for lung transplantation. She was so ill she was just "surviving"
and when this happens people focus in on themselves. "That's
the only way they can survive," Garrett says. "They
have no effort, physical or any other way available to commit
to anybody else in the family."
The transplantation was a success and for two years her young
daughters saw a new mum and the family had a fabulous life. But
then came chronic rejection.
The mother said she was heading back where she was before, saying:
"It's awful, I'm going back into myself again and I'm becoming
reasonably dependent on the family." It was agreed that her
next infection would not be treated. "She rang me and she
said: 'I've got an infection and I'd like to come and die in hospital'.
And she did and she had a lovely death and the whole family came
and said goodbye."
Although this sometimes happens, Garrett says there should be
a better system ensuring all patients' desires are taken into
account. There would need to be careful training for all involved
and legalities and safeguards would have to be thoroughly developed.
"What it's doing is giving the control back to the patient
and having the depth of discussion that allows them to make those
informed decisions about their care."
Stephen Streat, an intensive-care specialist from Auckland Hospital
and head of the organ donation programme, attracted controversy
last year by suggesting that death and dying be part of the high-school
curriculum. He fears an Americanised healthcare system, where
doctors simply fall into line with what the family wants in order
to avoid complaints.In America, the question is around who has
the right to decide. Here, the discussion is about what the right
thing is for the patient.
In intensive care at Auckland Hospital, the first meeting with
the family outlines the seriousness of the condition. If the patient
might die, the family are told that. "At some point it may
become very clear to all of the treating team that continuing
to treat the patient would either only prolong their dying, or,
worse, have the possibility of allowing them to survive without
recovery in a condition where they and the family would prefer
death." Over time, a mutual decision might be made to withdraw
treatment. It is not a painless process and is emotionally draining,
Streat says. He believes there is a widespread lack of awareness
about the limits of medical technology, a naive belief that technology
is all-powerful and that any health problem will respond to unlimited
money, that everything is treatable. This is not the case.
Streat thinks that one of the reasons people were upset at his
suggestion that death and dying be part of the curriculum is because
people are no longer accustomed to death. In the 1930s, 10 per
cent of the population did not make it past 5, and death as an
adolescent was common. In late Victorian times the average age
at death was 40. Now it is 80.
Streat is supportive of Silvester's initiative which has taken
the discussion about death out of the hospital and into the community.
It's a start. The passive approach prevails.
Johan Rosman has an unusual perspective on end-of-life planning.
The head of renal medicine at Middlemore Hospital is from the
Netherlands, where euthanasia is legal. He has also worked in
Germany, where every effort is made to keep patients alive, no
matter how old and sick.
Rosman is shocked by people who think doctors in the Netherlands
kill patients who are not contributing to society. He says it
is rare for doctors to take part in active euthanasia, where perhaps
someone with cancer has decided they do not want to go on in pain,
and there are strict criteria to follow. Passive euthanasia is
more common and is humane, he says. And it already happens in
New Zealand, when patients make choices about treatment.
With conditions such as end-stage renal failure most countries
say, "you have to do dialysis otherwise you will die",
and that's where the thinking stops, Rosman says. "We should
ask ourselves, 'do I do this patient any favours by proposing
dialysis?' "
Dialysis is an aggressive treatment which cleans the blood of
waste. What your kidneys achieve 24 hours a day, seven days a
week, is reduced to aggressive sessions three times a week.
Usually people feel miserable, nauseous and exhausted before
they come to dialysis, and miserable afterwards. "It's a
tough life, so you have to ask yourself from an end-of-life perspective
continuously during that treatment, is this worth it?"
He sees older people with severe diabetes and two amputated legs
who might feel it is not worth it. If they say stop, the staff
are happy with that. The patient will die peacefully within a
few weeks.
But sometimes families push them to go on for religious or cultural
reasons. "It's sad, it's really sad," Rosman says.R
osman hopes the seminar will help health professionals to lose
their fear of talking about death.
"As healthcare professionals we are trained to make people
healthy, to keep people alive, but I think a very important task
of healthcare professionals is to give the people who are not
going to survive a human and, especially, dignified way of getting
out of this life." "Dying is as much part of life as
being born. We should not try to hide from death."
By Catherine Masters
Read euthanasia news and developments from
Australia
