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A dignified death: who decides how we die?
We should be able to choose the way we die by writing an advanced care directive, or appointing someone to make our medical decisions when we can't. But there's legal arguments, confusion and arrogance in the way of us going gentle into that good night. Make your wishes clear, tell someone about them, and do it while you're competent. Reporter Di Martin Photograph: Tom Coull
Di Martin: Today Background Briefing begins with a difficult meeting.
We've been invited to join a medical team as it talks with the guardians of a gravely ill 71-year-old woman. A key question is whether the hospital is saving this patient's life, or merely prolonging her death.
Bill Silvester: OK. I'm Bill Silvester; I'm the intensive care specialist and I have been asked to become involved in terms of helping to run this meeting with you as the legal guardian.
Di Martin: The guardians and nine staff members sit in an unremarkable room, overlooking the hospital's roofline.
The patient is still on the ward, in the twilight space between death and life. She is no longer able to communicate. So her friends have been appointed to make her medical decisions.
It's rare for the media to be invited to such a meeting, and Background Briefing agreed to protect the identities of the guardians and the patient. Any mention of their names will be obscured in the following recording. Here's Dr Bill Silvester.
Bill Silvester: My understanding is that ... has been here for about 73, 74 days now.
Guardian: Since the 10th February.
Bill Silvester: So she came into hospital very unwell with a haemorrhage in the brain. And she had an operation and had a drain put in and she was in the intensive care unit for some time, and had a tracheostomy put in, which is the tube through the throat, and she still remained very disabled up until today.
Di Martin: The tracheostomy is now a common feature of those dying in hospitals around Australia. It allows the patient to breathe, and if they can't swallow, protects them from choking on their own saliva.
The patient's guardian asks whether it can be taken out, and this is Bill Silvester's reply.
Bill Silvester: And so if we took out the tracheostomy tube, all that saliva would go down into her lungs and very quickly she would end up with pneumonia, and without treatment she would die.
Guardian: Yes.
Bill Silvester: So at the moment it looks like the tracheostomy is permanent.
Guardian: What are the chances of her getting her swallow back?
Bill Silvester: Well she's been here for more than two months and our experience is that if someone's requiring a tracheostomy for that amount of time after the sort of injury that she has had to her brain, the likelihood of being able to take out the tracheostomy and have her survive without it is extremely low.
Di Martin: Bill Silvester has only just become involved in this patient's care. He trains his colleagues in how to diagnose when someone is dying. How and when to move from life prolonging treatment to palliative care.
Before Dr Silvester got involved, the medical team were intending to put a feeding tube into this woman's stomach, what's called a PEG tube.
It was Bill Silvester who suggested the patient mightn't want a PEG tube. And that it might be futile treatment, treatment that offers no hope of a meaningful recovery.
The team leaders agreed, and a meeting was scheduled with the patient's guardians.
Here, Bill Silvester delivers a grim prognosis.
Bill Silvester: We don't expect that she is going to be able to feed herself again in the future, that she is going to require full nursing care for the rest of her life, and she's going to remain incontinent and unable to control her bowels and her bladder, and that because she has a tracheostomy she is not able to go to a nursing home because there are virtually no nursing homes that take elderly patients with tracheostomies. They can't look after them. And so at the moment we are committing her to long term care where she repeatedly has to have her hands tied down because she keeps pulling the tube out, and keeps having to have the tube put back in and having x-rays done to see if the tube is in the right place.
Di Martin: If this woman was able to talk, she could refuse treatment. It's everyone's fundamental legal right.
Bill Silvester says if he's convinced that the she would not want to live like this, then it's time to move to palliative care.
Dr Silvester can find out by asking her friends of 20 years, the guardians.
Bill Silvester: So you are really speaking on her behalf as what we call her substitute decision-maker. So you're making the decision about what ... would want if she was able to sit here and tell us.
Guardian: She would have wanted me to turn the machine off.
Bill Silvester: Right.
Guardian: I know that much. You know, she didn't want - she doesn't even want to be left like this. The trachy and she's always stated she never wants to be like that, never. She said, 'Let me die, but don't let me live like that.'
Di Martin: The guardian has allowed her friend's wishes to be known. The patient no longer wants to be kept alive in this way.
The medical team's responsibilities should now be clear. They must stop life-prolonging treatment and move to palliative care. Anything else would violate the patient's rights.
But that responsibility is not obvious to everyone in the room. Right at the end of the meeting a junior doctor speaks up. He raises the original idea of putting in a PEG feeding tube, in effect proposing more life-prolonging treatment.
Junior doctor: We had originally considered getting a PEG tube, a feeding tube into the stomach, through the skin rather than through the nose, but we might just see how she goes ...
Di Martin: Bill Silvester quickly moves to cut off the junior doctor, and then he reassures the guardians.
Bill Silvester: Well the reason why we're not even bringing that up, is because you've made it very clear to us that ... wouldn't want to be the way she is. And if we continue treatment, we're going to keep her the way she would not want to be. Which would be the wrong thing to do.
Guardian: Well I think it is personally, because ... hasn't made any progress, I can't see her ever coming home again.
Bill Silvester: Which is correct. She's not going to come home.
Guardian: She's never going to come home so -
Bill Silvester: Why are we doing it?
Guardian: Why - are you doing it just to send her to a nursing home so they can do it? And she does not want to be in a nursing home, where she has to have nappies, oh, she'd be devastated. Absolutely devastated if she knew.
Di Martin: But there's still confusion, despite just having heard that the patient doesn't want to live like this.
Another type of life-prolonging treatment is suggested.
Trachy nurse: The other thing, when we take out the tracheostomy, she is also needing it to clear some of her secretions, suctioning-wise, and there's another option you can put in is the mini-tracheostomy. Did we want that for an interim period? No.
Bill Silvester: No.
Di Martin: Bill Silvester says he often has to guide colleagues about what treatment is in the patient's best interest. How to find out what a patient would want, even if they can't speak for themselves.
Dr Silvester says he's seen many patients treated against their wishes, because health professionals often find it difficult to let go.
Bill Silvester: Patients' end-of-life wishes are not being respected for a number of reasons. Either because they are not known, and that's because no-one's talked to them about it. Secondly, because the wishes may be known but not respected because doctors struggle with this as human beings. They struggle to accept the reality that the treatment is not working. Some doctors take it as a personal failure that the treatment is not working and so they want to push on regardless. And for some doctors it's a very difficult discussion to have with a patient or family members and so they avoid it by allowing the treatment to continue. Even though they may know that this is not what the person would want.
Di Martin: How do you change that culture though, especially in a stressed health system with poor resourcing often in public hospitals?
Bill Silvester: The way you change that culture is by education. Ongoing constant unwavering education of the junior doctors and where possible with the senior doctors.
Di Martin: So shortly after the Austin Hospital meeting, Bill Silvester was off to look for the two staff members that suggested more active treatment.
Hello, I'm Di Martin and Background Briefing this week looks at growing efforts to improve the medical care we get at the end of our lives.
Near death, most of us will lose the capacity to speak for ourselves. So how can we make our wishes known?
Increasingly, we're being asked to decide in advance what we want. You might have heard about advance care planning or advance care directives, sometimes known as a living will.
You write down what kind of medical treatment you would want when your life is threatened by disease or injury; and then appoint someone to make sure your wishes are respected, even if you're unconscious, or off with the pixies.
With an aging population, more and more of us are doing it.
Dr Bill Silvester is at the heart of global efforts. He's President of a new international society on advance care directives, and he's receiving Federal funding to roll out an advance directive training program called Respecting Patient Choices. Here's Dr Silvester.
Bill Silvester: I think we're riding on a wave of increasing public and political and health professional interest in advanced care planning because they can see that it is improving end-of-life care. Certainly since we published our landmark article in the BMJ in March last year -
Di Martin: British Medical Journal?
Bill Silvester: That's right. So the British Medical Journal article that we published showed that doing advanced care planning improved end-of-life care, improved the respect for patients' wishes at the end of life, improved patient and family satisfaction with regard to hospital care, and reduced the likelihood of anxiety, depression and post-traumatic stress in the surviving relatives of patients who died. And this whole area is continuing to grow.
Di Martin: Bill Silvester's article has been cited by US President Barack Obama and you can find a link to the journal article on our website.
The push to improve end of life care is not just about getting patients to decide what they want. It's also about calls for compulsory, standardised training for all health professionals, to recognise when someone is dying, what treatment to choose, and how to navigate complex law in this area.
Doctors and lawyers are confused about whether an advance care directive should be legally binding. And about the power of people known broadly as substitute decision makers. Those we appoint to make our medical decisions when we no longer can.
So should the law be changed, or is it just about better understanding?
The debate has come from the rapid changes to the way we die. In a couple of decades we've gone from dying in our beds, to being kept alive beyond reason or logic in intensive care.
To find out about that shift, we need to talk to Charlie Corke, an intensive care specialist from Victoria's port city of Geelong.
So Charlie, how long have you been practising here at Geelong?
Charlie Corke: I've been here since '91.
Di Martin: '91.
As we walk into Charlie Corke's Intensive Care Unit he says the average age of patients here is much higher than when he began to practice.
Charlie Corke says people are no longer comfortable or able to look after dying relatives, so they take them to hospital. And within the hospital, doctors are no longer comfortable looking after dying patients, so they refer them to the ICU.
Putting the ICU specialist on the front line of tough decisions.
Charlie Corke: With life support technology, with ventilators, with kidney machines, with heart support machines, there is stuff that we didn't even think about 20 years ago. And now that's all available, so we've got a huge amount of things that can stop people dying.
Di Martin: Charlie Corke says the technology revolution has had two profound impacts. Many doctors want to use the technology, and many families expect their loved ones to be treated.
Charlie Corke: The common Australian sentiment I think nowadays is that you've got a disease, the disease has a treatment, and the treatment should work. And when we tried every treatment and it hasn't worked, then you can die.
Di Martin: And in the meantime it would at the very least cause a lot of distress to the patient, and presumably cost an extraordinary amount of money?
Charlie Corke: Yes from my perspective I think it's much more the distress that I see in people that worries me - a lot of needles, a lot of operations, a lot of tubes, not being able to speak, to lose our dignity and that sort of thing; but of course it does cost a lot of money as well.
Di Martin: Charlie Corke says even if a patient can't speak, a doctor needs to find out what that patient would want, rather than taking the family's word at face value.
Charlie Corke: To try and understand something about the patient, and where they are in their life, whether they've got a feeling that they want to fight on, or whether they feel that they want to be gentle and to let things take a natural course. Where are they? There's a great quote from Ostler, who was a great physician at the turn of the century and what he said was 'It's more important to know what sort of person this disease has than what sort of disease the person has.' And I think that's a great quote, because it's about understanding the person, and one of the things I say to a family is 'What do you think he'd say if he were sitting in the chair here now?' and families will very often say, 'He'd say don't be ridiculous. Don't do this.' And you say, 'Well what do you think?' and they say 'Yes, we want you to treat him.'
Di Martin: Charlie Corke says families often falter because they're grieving.
Charlie Corke: When somebody is sick and dying, all sorts of emotions come up: grief, the desire not to lose people, the desire to do the right thing, the need for consensus in families which are now often fragmented families, are very, very difficult. And that's the reality.
Di Martin: Dr Charlie Corke says everyone should talk openly with their families about their end-of-life wishes. And they should complete an advance care directive, to give doctors critical guidance.
But studies have shown doctors believe they don't have to follow an advance care directive.
Professor Colleen Cartwright is a specialist in the field, and helped draft Queensland's advance care directive legislation.
Colleen Cartwright says these directives are legally binding.
Colleen Cartwright: It's based firstly on patient autonomy, respect for patient autonomy. They can make their decisions for good reasons, bad reasons, no reasons. Provided they are competent they can say 'If I'm in this condition I do, or I don't want the following things.' Then they can also appoint someone to ensure that their wishes are carried out.
Di Martin: There sounds to be a lot of ignorance around this area, and confusion, frankly, because I know a woman in New South Wales who has been told that her advance care directive is legally useless, but persuasive if it was waved about in a hospital.
Colleen Cartwright: It's interesting, isn't it. I actually have heard doctors and solicitors tell people that. I go and do lots of presentations for older people's organisations, and they will phone me afterwards and say, 'Well I took my document off to my doctor and he said it wasn't worth the paper it was written on.' Or, 'My solicitor says they are not legally binding.' And I said, 'Well tell them that they are putting themselves at great risk. Firstly your doctor, if your doctor does not obey your directive; secondly your solicitor, for giving you incorrect legal advice.'
Di Martin: Colleen Cartwright says there are clear penalties for doctors who ignore an advance directive.
Colleen Cartwright: We haven't had a case, so I can't tell you what's likely to be imposed. But under the legislation it does clearly set out the patient's rights and so infringement of those rights, could lead to a case of tort, or a case of assault for example.
Based at Southern Cross University, Professor Cartwright is frustrated about the continuing legal debate about the power of advance care directives.
She says a recent common law case should have cleared up legal confusion. It's a case from the central coast of New South Wales.
Colleen Cartwright: A gentleman was admitted to one of the hospitals there, and he was very ill. He had lost capacity; he went into renal failure. And he was put on dialysis.
Di Martin: The man was a Jehovah's Witness, a religion that forbids blood transfusions. Soon after the man was admitted, his substitute decision-maker turned up, known as an enduring guardian in New South Wales. Here's Colleen Cartwright.
Colleen Cartwright: And he also had with him a hand-written advance directive, one that's often used by people of the Jehovah's Witness religion. And in that directive, the sick patient had said that if he lost capacity he not only didn't want a blood transfusion, but he also didn't want to be put on dialysis. So here we are, the hospital is in a bit of a bind because he is on dialysis. And if they take him off, they know he will die. They did a very good thing; they didn't contest it, they simply applied to the Supreme Court for a declaration that they could take him off dialysis in respect of his wishes, knowing he would die. Now the judge gave that decision and it was a very interesting case because the advance directive had been written by hand and had not been signed. However, they were able to prove forensically that the man had written it, and his enduring guardian said he was there when the man did write it. So the judge gave the declaration that the man could be taken off, knowing he would die. And then when the judge handed down his reasoning, it was very, very well done, because he could have simply said, 'Oh well, it's because his enduring guardian said to do it.' But he didn't. And yes, he mentioned enduring guardian, but quite separately he had mentioned a written advance directive. And what it came down to was almost if you have even written it on the back of an envelope and there's proof you've written it, and there's no evidence that you have changed your mind, it is legally binding.
Di Martin: But a former Public Advocate in Victoria is not so sure.
Julian Gardner says the New South Wales case was clear-cut because the man was a Jehovah's Witness; the religion forbids blood transfusions.
Julian Gardner: The history of courts in Australia has been that they've tended to have a cautious approach to preserving life. I don't think it's irrelevant that in that case of Mr Hunter, he was a Jehovah's Witness, and it does seem that sometimes the courts are more willing where there's some sort of fundamental religious conviction like that as a basis for the statement of wishes to respect them.
Di Martin: Julian Gardner says there are other reasons Australia is likely to see more court cases testing this area.
Julian Gardner: A further example in 2009 was the case of Mr Rossiter in Perth who was a quadriplegic and was expressing the view that he no longer wished to be kept alive. He was being fed via a PEG tube. That went to the Supreme Court which said quite properly, well if he's competent, and we believe he is, and we'll test him and if he's competent, he has a right to refuse that treatment. Now I've got no doubts that the institution looking after him knew that. But they felt too nervous to simply assume yes, that is what the law says.
Di Martin: Julian Gardner says there is also need for law reform both at a State and Federal level.
Julian Gardner: Each State and Territory has its own set of laws. They are inconsistent, there is no uniform recognition across boundaries.
Di Martin: Which is a big problem because Australians are so mobile. Julian Gardner gives an example of a hypothetical patient called Harold. Harold has a Victorian advance care directive, and his wife is his substitute decision-maker. But Harold has a massive stroke on the Gold Coast. Here's Julian Gardner.
Julian Gardner: So that for example, if Harold were holidaying in Queensland, they have a different set of documentation there and whilst you can sign a directive in Queensland, a doctor can over-ride that if they believe it's in good medical practice. So particularly given the difficulties that doctors have recognising and understanding their own State laws, confronted with a document from another State, they may well say, 'Oh, I don't feel as though I know enough about this and therefore I'm going to treat, even though you, Harold's wife, is telling me don't treat.'
Di Martin: There's a Federal push to line up laws across the country, what's called a National Framework is due to be released. It's a set of guidelines for the States to work towards. But they're guidelines only.
There are also calls to clear up confusion around the rights and responsibilities of the so-called substitute decision makers. Those we appoint to make medical decisions for us when we no longer can. In some States, they are known as Medical Enduring Powers of Attorney. In New South Wales, they're called Enduring Guardians.
In her first interview since stepping down as President of the New South Wales Guardianship Tribunal, Di Robinson says it's not clear whether an enduring guardian or a directive has the final say.
Di Robinson: Say for example, I've done that; I have appointed my son as my Enduring Guardian and I have given him that medical power. But I have also made an advance care plan or an advance care directive. And when something happens to me - I might have a stroke, or a brain injury or I develop dementia over time, the doctor has to look at my advance care directive and decide what sort of treatment I am endorsing, I am consenting to. And what if my son by this stage disagrees with that? Maybe I've said, 'No, I don't want active treatment'. He says, 'No, please, I want her to have all the treatment that's available.' What does the doctor do? Who does he go to? Is my advance care directive the final say? When I have spoken to medical practitioners in the field, there has been considerable confusion.
Di Martin: Di Robinson says there are other problems as well. Unlike most States and territories, New South Wales doesn't have specific legislation about advance care directives. It relies on the common law.
But Di Robinson says the common law doesn't help people navigate the raft of different advance care directive forms available. Nor clarify if a document needs a witness or a signature. Nor decide on whether a central registry of directives should be set up.
Di Robinson says it's time the New South Wales Law Reform Commission got involved.
Di Robinson: The legal mechanisms are confused and overly complex. And they need to be clarified. We need some clarity about the standing and the status of advanced care directives. We have got that in the Common Law, but we've got no statutory basis and we've got no clear forms, we've got no witnessing provisions, we've got no registers, we don't know who's made these documents. I think that there's considerable confusion both in the general community and particularly in the medical community, about how these documents operate, particularly in circumstances of conflict or difficulty.
Di Martin: You're listening to Background Briefing, and a program on advance care directives and other moves to respect our end of life wishes. I'm Di Martin.
Bill Silvester: Raymond? Hello, I'm Dr Bill.
Di Martin: Back at the Austin Hospital in Melbourne, Dr Bill Silvester talks to an elderly man in intensive care who doesn't have an advance care directive.
Dr Silvester worries the legal debate is putting people off advance care directives. He says legalities aside, directives have a critical purpose: clear communication between a patient and their doctor.
Bill Silvester says it doesn't matter which form you fill in, and you can find some different forms on our website.
Dr Silvester says you just need to be competent, and get a couple of key things right.
Bill Silvester: And this applies throughout Australia. Firstly, we should identify who it is that we would want to speak on our behalf if we lost the capacity to make decisions, and that's usually going to be a family member. Secondly, you need to communicate with that person about what you would see as an acceptable quality of life in the future if something was to happen. So then if they are being asked to make decisions, they are making an informed decision on your behalf.
Di Martin: Bill Silvester says to avoid terms like 'no heroic measures', because it's far too subjective. Or writing you don't want resuscitation. You might fall off a ladder tomorrow and be very glad of it.
Bill Silvester says instead, work out what level of disability you could live with.
Bill Silvester: Would you be happy to be kept alive if you were in a nursing home, you couldn't communicate, you couldn't feed yourself or look after yourself, but you could be pushed outside in a wheelchair and feel the warmth of the sun upon your back? If that's enough for you, that's fine. It's good that we know that. If, however, you wanted to be able to be completely independent and if you lost the capacity to communicate or understand speech, or you couldn't feed yourself, or you couldn't take yourself to the toilet, then that's also useful for us to know. So we can use our understanding of what you would see as an acceptable outcome, to guide us as the doctors in the decisions we're making.
Di Martin: That's Bill Silvester.
In nearby Geelong, Dr Charlie Corke says it's also important to pick the right person to speak for you. He tells this story about an elderly Croatian man he treated.
Charlie Corke: And this gentleman had appointed his business partner as his agent. And they had been in Australia together for a long time, they were good friends. And he had actively appointed this business partner because he said 'My family are all amazingly emotional and they'll never be able to make a good decision.' And this chap was just phenomenal. He came in, and he listened to us when we explained the situation, he asked if he could go and talk to somebody else and get a second opinion, and we arranged that for him. He then came back to the family said, 'Now I have picked up as much as I can medically about the situation, and I want to know what you all think as well. But I'd like you to recognise that I have been asked to make this decision in the end. And I'm going to do that, because he asked me to do that, and are you all comfy with that?' And they all said, 'Yes'. And they all gave their opinions about things. And then he finally summarised the situation beautifully and said, 'And I think if it was me, I would have this operation, but I know him very well, I know what his fears have been, and I'm going to make a decision that he is not going to have it.' And the family said, 'thank you very much; we could never ever have made that decision, but we really, really value you doing it.' and he then finished by saying 'And I am now going to look after you as a family for him.' And it was fabulous. It was very, very well done. I really admired him, and I admired his friend who had done this, and saved his family all the anguish of fighting, because often it does cause lots of fighting in families.
Di Martin: Dr Charlie Corke, speaking in Geelong Hospital.
Just down the road from Geelong is the sleepy seaside town of Torquay. There, Lisa Sinopoli knows very well the anguish that surrounds end-of-life decisions.
Over a cup of tea in her neat 3-bedroom home, Lisa Sinopoli talks of being diagnosed with congestive heart failure 25 years ago. She's long known that she's dying.
But Lisa Sinopoli says that didn't make filling in her advance care forms any easier. She says her first hurdle was her own reluctance.
Lisa Sinopoli: I didn't jump into it. I couldn't just sit there and think, Right, this is what I'd like to do. I guess I didn't want to fill them in because I just didn't want to believe the fact that I'm dying. So I guess it's a denial stage that you go through, because filling in paperwork like this is sort of saying how you want to die, when you don't want to die.
Di Martin: Lisa Sinopoli's next difficulty was telling her family about her decision to refuse medical treatment when the time comes.
Lisa Sinopoli is the single mother of two school-aged boys.
Lisa Sinopoli: When you do fill in these forms you worry about everyone else around you. You know, your main concern is that everyone feels that it comes to point where you've got to sort of think of what you want done, and what life you can give them. Look, to be honest, I just knew that if I have incubation, my children would have to come to the hospital and see me on a machine, and I wouldn't be able to communicate with them, and then the decision to turn the life support off would be horrible.
Di Martin: So this is you being a mum, this is you looking after your kids.
Lisa Sinopoli: Oh, absolutely. They're the reason I continue every day. They're the reason I wake up in the morning. What are they going to see for the last few days? What vision are they going to have in their head of how they saw Mum last. And I just thought in a hospital room with tubes wasn't a vision I'd like to leave with them.
Di Martin: What do the kids think of these directives? Because I can imagine for a kid, anything to save Mum would be the right decision.
Lisa Sinopoli: Yes, of course. There are some things that you can get into detail with your children, some things you sort of need to leave aside. I've explained to my children about resuscitation. I let them watch E.R. and RPA and everything to sort of know what resus and incubation and everything is, and I've explained to them that in my situation it would not benefit. If I had that I wouldn't come back normal or half normal as I was. I've explained to them that sometimes people just choose to not have that, and let God make the decision of when it's time to go. And the older one, he's OK, but they're kids, and the other one just gets angry. But I think they're coping as well as they could. But I think they do it for me, more.
Di Martin: Still struggling with the impact of her decision on her family, Lisa Sinopoli then had to tussle with some spiritual dilemmas as well.
She's a practising Christian, and had to decide whether refusing treatment was euthanasia.
Lisa Sinopoli: I thought if I choose to go with no resuscitation, was that a form of taking my own life? So I sat with my pastor from church and needed to sit with God and ask those questions, and it gave me hope in realising that it wasn't taking your own life, all you were doing was leaving it to God as to when he was going to take you, instead of to machines.
Di Martin: That's Lisa Sinopoli in the Victorian coastal town of Torquay.
Advance care directives are often confused with euthanasia. But Victoria's former Public Advocate, Julian Gardner, says they shouldn't be.
Julian Gardner: Euthanasia is a positive act, which is intended to bring about death. If I, as a competent adult, decide that when I have cancer I do not want chemotherapy even though it may extend my life for the next six months, but it will be a fairly miserable six months, if I decide to refuse that treatment, that is not euthanasia. I am simply saying that I have got a condition that is going to run its course and I'm refusing medical treatment. If I said I want you to stick a needle in me and end my life now, that would be euthanasia. So advance care planning doesn't give people the right to commit suicide
Di Martin: Julian Gardner says advance directives are still associated with euthanasia, which means politicians are very reluctant to get involved. Which makes law reform very difficult.
Julian Gardner: I had discussions with more than one health minister who personally expressed support for what I was talking about, but were unwilling to take it to cabinet. And I think, and although I have no positive evidence, I think this was simply because of this concern about the fact that this would raise the spectre of the euthanasia debate. And political parties are unwilling to have that debate.
Di Martin: As the population ages, and the debate on how we die grows, more and more of us are becoming medical decision-makers for others. We are charged with carrying out the wishes of our friends and relatives, so once they lose capacity, we try to ensure that they die with dignity and without suffering.
But not many of us understand how to do that. For example, guardians may think they have the final say; that they can walk into an intensive care unit and have life support turned off.
In Geelong, Charlie Corke says that's not necessarily the case. He says a doctor always has to satisfy themselves that a guardian is making the right call.
Charlie Corke: Because we can get some silly things, where a guardian might say that they don't want someone ventilated for asthma when you are sure that this is a very short ventilation overnight, and they will be good tomorrow. And they're saying, 'No, they never wanted to go on life support.' And you think, well this is not actually what I think the person was meaning. They've chosen poorly. And their agent is an idiot.
Di Martin: Charlie Corke says doctors also get this wrong. He conducted a survey of intensive care doctors that found most would not follow the wishes of a guardian.
The survey revealed those doctors believe end of life decisions are up to the doctor, and guardians need only be respected when they agree with the medico.
Charlie Corke says the rights and responsibilities of these guardians need to be better understood by everyone.
Background Briefing has been told about several examples of confusion about guardians, including this cautionary tale from New South Wales. It shows how you can die in misery in a major Sydney hospital, despite having a guardianship dream team.
Sixty-nine-year-old Pam Taggart died of lung cancer last year. Before her death she appointed a lawyer, a doctor and a church leader to act on her behalf.
But Pam's enduring guardians say ignorance of their role, and a dysfunctional health system, robbed them of the chance to give Pam a dignified death.
Background Briefing has seen a copy of Pam's medical records. Despite repeatedly complaining of chest pain, her end stage lung cancer remained undiagnosed for more than three weeks. For four weeks, the only pain relief Pam received was six paracetamol tablets.
One of Pam's enduring guardians is a Canberra lawyer called Lessli Strong.
Lessli Strong: Unless you have doctors who have the time and the resources to focus on the person, and care about the person, you are not going to be heard. And worse than that, it means the person isn't heard.
Di Martin: Lessli Strong says Pam Taggart was admitted to hospital suffering unexplained weight loss, chest pain and general body pain.
Pam also had a long history of mental illness, and on admission was agitated and confused. She had taken herself off her usual psychiatric medication. Pam was diagnosed as having a schizophrenic episode.
Lessli Strong says from the beginning, Pam's pain was written off as delusional.
Lessli Strong: She was in genuine and extreme pain in her lung, and in the right side of her head. I told them that I knew this because it wasn't attention getting and it wasn't anger. It would interrupt her conversations. She would suddenly grab at her chest or her head, talk about the pain, and then go on. So I was very aware that she had significant pain and I advised them of that, and that they needed to investigate it. To my knowledge that was not investigated for many weeks.
Di Martin: At the same time, Pam was refusing to eat and drink, and was refusing critical psychiatric medication.
Pam's second enduring guardian is Logan Harrison-Mordaunt who used to head the Canberra Presbytery. He describes first seeing Pam on the ward.
Logan Harrison-Mordaunt: I was quite shocked because she was very frail, very tiny and just sort of huddled up. And she was obviously mentally not with it. And I'd said, you need this, a drip, and so she agreed. And when they came in to give it she started fighting and struggling and 'I'm not having that, I told you I don't want it.' But she'd just agreed to it five minutes before.
Di Martin: In your opinion did she have capacity? Did she have the ability to make medical decisions?
Logan Harrison-Mordaunt: No, definitely not. She didn't even know what hospital she was in.
Di Martin: Both Logan Harrison-Mordaunt and Lessli Strong believed their jobs as enduring guardian had begun. Pam had lost capacity and they would make her medical decisions. They asked repeatedly for the medical team to find a way to give Pam her psychiatric medication, and to investigate other ways for Pam to eat and drink.
Logan Harrison-Mordaunt says after two weeks, the team had only made limited progress. With Pam's condition continuing to deteriorate, he stepped up his questioning of the treatment plan. This is what Logan Harrison-Mordaunt was told.
Logan Harrison-Mordaunt: That she was unco-operative and so therefore giving medication was a problem. She wouldn't eat, fluids were a problem, even getting blood from her was a problem. She would struggle with them and refuse to co-operate.
Di Martin: And what was your response to this?
Logan Harrison-Mordaunt: Well basically I said "Well surely it's the psycho-geriatric unit, surely you have this problem regularly."
Di Martin: Because there's a lot of dementia cases on that ward.
Logan Harrison-Mordaunt: Yes. And so I said, "What would you normally do? I mean you just can't not give any treatment and just say the person is unco-operative and let them die."
Di Martin: That's Logan Harrison-Mordaunt.
Pam Taggart's other enduring guardian says the idea of patient rights had been dangerously confused. Here's Lessli Strong.
Lessli Strong: One of the issues always was, in almost an accusing tone, 'But we have to respect the dignity of the patient.' And there was almost an underlying threat that we were seen not to be respecting her dignity, by suggesting that perhaps some action should be taken against her will.
Di Martin: Lessli Strong finally twigged that she didn't have the power to make Pam's medical decisions. And that could only mean that Pam's mental capacity had not been assessed. If there's no assessment, the patient has to be treated as competent.
Lessli Strong says a week after admission, a member of Pam's medical team confirmed that no capacity assessment had been done. It was only after this conversation that the first and only note about capacity appears in Pam's medical records.
Pam Taggart had a third important advocate. Not an enduring guardian, but a friend who's a registrar at another hospital. The friend acted in a private capacity, but was able to assess Pam's treatment through the eyes of a doctor with geriatric and palliative care experience.
She wants to be known by her first name, Alison.
Alison says medical records reveal that Pam's medical team didn't seem to understand the question of capacity. There's a note in the records that Pam could have caused her own medical problems by refusing to eat, drink, and take her medication.
Alison says it looked like Pam was being treated as a competent person, even though it was obvious she wasn't.
Alison: Absolutely. So if somebody is refusing basic nutrition and refusing essential medications, then that is a big issue.
Di Martin: And you would have thought in that case that her capacity should have been assessed?
Alison: Yes. It wouldn't have been hard to assess.
Di Martin: Is it your understanding that the treatment team were following Pam's wishes rather than the wishes of the guardians?
Alison: Absolutely, despite the fact that she really lacked capacity from day one.
Di Martin: Meanwhile, Pam's weight continued to drop, her breathing was difficult, and she was still complaining of pain. All Pam Taggart's advocates were trying to get the medical team to investigate her condition more aggressively.
The advocates say some of the medical team were doing their best, and others were privately egging them on in their efforts to get Pam better treatment.
Alison is a registrar from another hospital, but speaks here in a private capacity. She says resourcing problems in New South Wales' hospitals don't fully explain the standard of Pam Taggart's care.
Alison: In this situation, no, I didn't think Pam's care was adequate, particularly in the first few weeks before finding out what was going on. It wasn't about curing her, doing magic, it was about treating her distress. Because she was a human being who needed some dignity and some respect. And I didn't get the feeling, particularly on my first visit, that that's what she was getting any of.
Di Martin: What impression did you get?
Alison: I got the impression that she was just put in the bed just to exist, and so if she refused her meds, well then she refused meds. Well that's up to her. And so it took for us to really press home the point that look, she's distressed. Can this please be reviewed? Can this option please be considered? Can somebody please talk to us about what might be available to help Pam in this situation? It really did take the guardians to chase that up for that to happen.
Di Martin: That's Alison, a registrar from another hospital, who advocated on Pam Taggart's behalf.
One of Pam's enduring guardians, Lessli Strong, says it was only after all the advocates insisted on a meeting with the medical team, that the hospital finally agreed to a body scan.
Lessli Strong says she didn't expect to fight every step of the way to get a proper diagnosis.
Lessli Strong: I anticipated first of all, that they would consult with guardians when they could not consult with the patient. Secondly, I assumed that they would be focused on treatment for her that would improve her health. What actually happened was that they took all the power amongst themselves, they spoke amongst themselves, they fobbed us off all of the time, to say they were going to have more discussions.
Di Martin: What did the doctors think was wrong with Pam, and what was the condition she was eventually revealed to have?
Lessli Strong: I don't know what the doctors thought, because they never communicated to us, other than she wasn't taking treatment. The condition that she was diagnosed with over three weeks after she was in that hospital was lung cancer. Advanced. And she died about two weeks after that. So she had been suffering the pain and discomfort of lung cancer for over three weeks; for pain, when she was in pain, she would be provided with Panadol, and it was not diagnosed until we insisted on the scan.
Di Martin: Lessli Strong is deeply disillusioned about her impact as an enduring guardian.
Lessli Strong: What went wrong was, I went to that hospital believing that we had a health care system that would look after Pam, that would see her as a person, and would listen to the fact that she trusted two guardians enough to give them power to make her medical decisions for her. She did not know that would be ineffective and neither did we. It's so disappointing. What frightens me, is if Pam did not have us there, how much worse her death would have been, and the fact of even having us there did not allow her a dignified death.
Di Martin: That's Lessli Strong.
Background Briefing contacted the hospital for an interview. It declined, saying it couldn't discuss details of the case because it would breach the patient's confidentiality.
Instead a statement was issued, saying the enduring guardians were closely involved and regularly updated. It also says that Pam Taggart was given the best possible care.
Across the country, there's broad consensus that we have to try much harder if we're to improve end of life care. An intensive care specialist in Sydney's west says beyond making our wishes known in advance, there's another solution to consider.
Dr Ken Hillman says Australia should be doing much more to allow people to avoid hospitals altogether, and die in their own beds.
Dr Hillman has recently returned from the American state of Oregon.
Ken Hillman: I went to see my wife's sister who was dying of motor neuron disease, and she doesn't mind me talking about it. And I went to the State of Oregon in the United States and as everyone knows, America has one of the most expensive and one of the least efficient health systems in the world. So I was expecting the worst.
Di Martin: What Ken Hillman found was quite the opposite.
Ken Hillman: So if the patient has less than six months to live, then you have the option of being supported in the home. The deal is, that you have to forego any active treatment. So you can't have expensive chemotherapy, radiotherapy, multiple operations, but you are supported in a Rolls-Royce fashion. There'd be 24-hour nursing coverage. There was an occupational therapist coming twice a week, a physiotherapist coming twice a week, there was a social worker who came the next day or the following day and fixed up all the paperwork that one needed to have fixed up; there was a massage person coming twice a week, and there was a person who would bathe her because she couldn't move her muscles any more, and would use those very complex lifts and would bathe her and wash her.
Di Martin: Ken Hillman says it was a public service, not just for the rich.
Ken Hillman: Now my sister-in-law had private insurance so Medicaid would bill her insurance company. But if you couldn't afford it or if you didn't have private insurance, you were eligible for this hospice care.
Di Martin: What's the economic rationale behind this?
Ken Hillman: Well what was really surprising for me, but I guess not surprising when you think about it, the reason why one has such a good service is because it's cost effective. It is much cheaper to provide that fantastic treatment in the home than it is to continue to have chemotherapy, radiotherapy, repeated operations etc., in acute hospitals.
Di Martin: If that service was available in Australia, do you think that would make a difference to the people you're now seeing coming into ICU?
Ken Hillman: I think it would make an enormous difference.
Di Martin: Background Briefing's Co-ordinating Producer is Linda McGinnis. Research by Anna Whitfeld. Our technical operator is Michelle Goldsworthy, and Kirsten Garrett is Executive Producer. I'm Di Martin and you're listening to ABC Radio National.
Further Information
- Respecting Patient Choices
- Bill Silvester is helping to roll out training in advance care planning to hospital staff and aged care workers. This program is called Respecting Patient Choices.
- 'Saving Life or Prolonging Death' by Dr Charlie Corke
- A book which explains how the Australian medical system is geared to overtreat the dying. Includes details on advance care directives, substitute decision makers and the law
- ASLaRC at Southern Cross University
- Website for useful documents for NSW and Qld - from Professor Colleen Cartwright's homepage at Southern Cross University.
- Victorian Public Advocate website
- Forms and information on appointing a substitute decision maker, and refusing treatment
- The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 1 (New South Wales).
- Journal of Law and Medicine, 18(3), pp. 498-522. Authors: White, Benjamin P., Willmott, Lindy, Trowse, Pip, Parker, Malcolm, & Cartwright, Colleen
- The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 2 (Queensland).
- Journal of Law and Medicine, 18(3), pp. 523-544. Authors: Willmott, Lindy, White, Benjamin P., Parker, Malcolm, & Cartwright, Colleen
- The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : part 3 (Victoria).
- Journal of Law and Medicine, 18(4), pp. 773-797. Authors: Willmott, Lindy, White, Benjamin P., Parker, Malcolm, & Cartwright, Colleen
- The impact of advance care planning on end of life care in elderly patients: randomised controlled trial
- British Medical Journal 2010;340:c1345 Karen M Detering, respiratory physician and clinical leader, Andrew D Hancock, project officer, Michael C
Reade, physician, William Silvester, intensive care physician and director
- Presenter
- Di Martin
- Producer
- Di Martin
Comments (36)
Nan M :
10 Jun 2011 6:50:11pm
This show looks like it's going to investigate the precise dilemma I discovered when looking into creating an advance care directive in WA. The choice of either or both an enduring guardian and an advance care directive is not helped by the advice published by the WA dept of health, which is muddy at least - and I fancy this coming investigation may highlight the logical problems - those that let me decide that the likelihood of my wishes being observed is very small. I've left creation of directive or guardian alone and can only hope that should decisions become necessary over my muteness that I get lucky with whomever is treating me and that my family has the strength to stand up for me otherwise.
However the dilemma is not unique to handling medical care; aside from succession, the law gives wide latitude to the interpretation of wills, and executors have what many see as unfettered power over the management of an estate. No matter how carefully a person chooses an executor, things and people have a tendency to change, so leaving power with one person is not a good idea whatever the realm they are going to exercise that power in.
Perhaps the drafters of advance directives should try not to use the materialist framework of property within which conventional wills have evolved, and which appears to have influenced the creation of the advanced care directive/enduring guardian setup, and face up to the hard but necessary job of finding a language to express grades of emotions within an ethical framework, and then establish an oversight agency for its maintenance. This may also free medicos and guardians from negotiating over a dying body as if it is nothing much more than a lump of meat. The richness of living isn't yet encompassed by current law.
It's not as if lawyers won't get employed to interpret any new kind of law, so why the reluctance to venture outside Jarndyce and Jarndyce kinds of oppositional approaches?
Me? I'd give to the Family Law people the task of getting medicos to come around to a dialectic kind of mindset ; they've brought all of us so much further out of adversarial proprietary attitudes than any other branch of the law.
Thanks for the chance to rattle on about all this. Looking forward to a productive discussion in this thread.
Sara Graham :
11 Jun 2011 11:58:19am
The Advance Care Directive Association Inc (www advancecaredirectives.org.au)is a not for profit organisation that has been in existence for about 10 years and has published a book entitled My Health, My Future, My Choice: An Advance Care Directive for New South Wales. This book explains what an advance care directive is and how to complete one. The book also contains a directive to complete. Since the book was published the Association has sold over 10,000 copies. It is clear from this that many people are concerned about their health care treatment in the future and welcome the opportunity to express their choice regarding their future health treatment and personal care. An order form for the book can be obtained from the website or by phoning 0423 157 003. The price of the book is $14.00 and the authors do not benefit financialy from sales.
Charlie :
14 Jun 2011 11:54:18am
Brian Hamer :
12 Jun 2011 10:30:26am
i have just listened to the pro0gramme on health care directive3s and as a legal practiotioner in this field found it most interesting. Did Dr Bill give advice to those young doctors at the bedside in ICU who were advising more active treatment??
The obvious tension between the guardians and the health staff at the Canberra hospital was regrettable as was the statement of the hospital at the end.
I strongly support the implementation of national legislation to create uniformity between the states and to establish the status of the advanced health care directive and to create uniformity of the content of the directive.
I find that if me elderly clients are making a power of attorney then they will also make a guardianship appointment which will inbclude a direction that it is not their wish to prolong their lives by artificial means other that to provide them with a pain free death together with directions to tereating medical practitiioners about privacy legislation and family members and guardians.
About two years ago I went through the experience of medical staff at a hospital wanting to provide my 94 year old father with active treatment for two fractured hips with a poor prognosis when he was so distracted that he was able to pull out his catheter and facing a di8minishing ability to uptake oxygen. The palliative care doctor at this public hospital convened a meeting with me and my brotehrs and the treating staff and it became quite clear what the family's intentions were and within 48 hours he had died; what a relief for him and his family. Younger medical practitioners really do need to be counselled in this area. Can i have reference to the court decision about the Jehovah's Witness casse please ??
In all a most informative and helpful programme in the fine tradition of Radio National
Moderator: The decision made by the NSW Supreme Court is available on line: http://www.austlii.edu.au/au/cases/nsw/NSWSC/2009/761.html
Charlie :
14 Jun 2011 11:50:07am
I'VE BEEN A MEMBER OF EXIT for years .. hoping for the peaceful pill to get within the law ..
I have signed (in my sound mind) an ACD which I doubt..
I am in my mid 80s, harbouring a lump which I hope is cancer .. What I don't want is prolonged life .. (although I guess I'll call for pain relief) if and when ..
Why is AMA against assisted suicide? That is HEALING..
a GOOD DEATH I.E.. EUTHANASIA
vicki :
19 Jun 2011 1:06:39am
I am a palliative nurse, and although there is no official assisted sucide which you speak of, find your self a
doctor who will make sure that you are
pain free and if you wish to just be
sedated and slip away ask your doctor
about that too. Not all Doctors are comfortable with end of life care, due to scope of practice, personal or religious reasons. Well mananged end of life care means that you have a peaceful death. It is not hastened, but when your condition becomes such that it is too burdensome for you,
you are medicated in such a way that you are comfortable and slip peacefully away. I can not stress enough how important it is to speak frankly to your doctor.
Lulu :
12 Jun 2011 11:40:29am
I tuned in to the tail end of this program and will be listening in full as soon as it is online.Thank you for airing this important topic.As a widow with no children I have thought about whom to nominate as an enduring guardian but not yet acted.Now with a second more serious cancer diagnosis it is time for me to investigate and carry through my intentions in spite of all the hurdles to be faced."Patient privacy" and "patient dignity" are used to cover a multitude of sins and common sense flies out the window. The end of life is far too medicalised for too many people- a time of experimentation for some medicos?If a person has 12 months or less to live then they should have the option actively presented to them of being cared for at home if their situation means this is feasible.Bring on the debate.
Thelma :
12 Jun 2011 5:10:23pm
I am a retired palliative care community nurse. Up until 1 year ago, when ill health forced me to step down, I co-ordinated a Chapter of Exit International in my home town. Interest was high. It was during this period I realised that most of the attendees knew nothing about Advance Health Care Directives and Guardianship issues. Because of ill health, I do not now run the local Chapter for Exit, but as my health has improved I have begun, on my own behalf, to put together a tutorial to teach people in the Community as much as I can about Guardianship and ACHD issues.
The program this morning on ABC Radio National (which I knew about beforehand, as I subscribe to Background Briefing newsletter), was
remarkable in its reach. It addressed every issue which needs airing, and not too soon. ACHD's and Guardianship are the tip of the iceberg, and BB presented the program to reflect this, in my view most effectively. As I knew about the program in advance, I had e-mailed many people on my list encouraging them to listen. No feedback as yet. There is a group of solicitors in my town who have
offered to give advice to citizens on Advance Directives, Guardianship and other issues arising out of ageing. After hearing the program I wonder whether they will need help, as it sounds like a hornets nest. NSW does not have legal guidelines on this issue at the moment. Professor Cartwright asked this morning "Who is the judge?" Doctors, solicitors? There was mention of an article from the BMJ which interests me. Could BB let me know where I could access this article please? Finally, I strongly suggest that Four Courners be given an opportunity to take this important issue to the TV audiences, as powerful as BB is, I don't think their audience is as wide as it chould be.
When nursing in hospitals (10)years ago I witnessed many harrowing scenes, which, for want of some written indication from the (by then unconscious) patient, often had the attending doctors very concerned as to which was the best course of action. It is simply not fair on the medicos to expect them to make such a decision when the patient has lost capacity or is unconscious, because these days, people can be kept alive for years and years by modern techniques and drugs.
We must educate the public, and fast, as to their responsibilities in this matter, and once again thank you BB for addressing this issue to very well.
Bill :
12 Jun 2011 11:25:50pm
British Medical Journal. 2010 Mar 23;340:c1345. doi: 10.1136/bmj.c1345.
The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.
Detering KM, Hancock AD, Reade MC, Silvester W.
Respecting Patient Choices Program, Austin Health, PO Box 555, Heidelberg, Victoria, Australia.
Thelma :
13 Jun 2011 6:38:20pm
Thank you Bill. I have thanked you
in another post. Didn't know I had
to press Reply.
vicki :
19 Jun 2011 12:38:36am
Hi Thelma, I am a novice community palliative care nurse in regional wa, and I am being taught the importance of
advanced health directives, and guardinship issues. The importance if making sure that the client and next of kin are aware of how refusing to have certain treatments when needed will affect them, and the importance of making sure that they fully understand the implications of all decisions to have treatments will affect them also. In my short time in my role I have seen disasterous consequences of both lack of understanding of patients, and lack of explanations by health professionals which contribute to making their end of life decisions burdensome for them. There seems to be a glossing over of detail, or piece by piece mentality which I find disturbing. I respect AHD's but stress that they must be made carefully.
Thelma :
19 Jun 2011 4:54:14pm
Dear Vicki, On the Background Briefing website, scroll down
to the links below the comments.
You will find there a link to
Professor Colleen Cartwright of Southern Cross University. Professor Cartwright's e-mail address should be there. If you cannot find it, go to Google Australia, and type in Colleen Cartwright, SCUniversity and it should be there. Professor Cartwright will be very interested in what you have to say about what is being taught to you, and what you have observed. As you have rightly noted, many people, and they are ill people whose concentration and awareness are not the best, do not fully comprehend what is being told to them at the bedside, probably by some doctor whom they do not know.
(not the doctor's fault). The patients you describe badly need a mentor to be with them, who understands the whole process, and can explain it in such a way that they would understand. Nor can they be expected to make such important decisions overnight. If they have never thought about End of Life Choices before, it is a Huge step for them, and to expect that they can make such a decision, given disconnected information when they are already so ill, is hardly helpful. I'm glad you took the time to comment on this site. I am not connected to the ABC in any way, but, like you, feel strongly enough about this issue to make a few comments. If you cannot find Colleen, just write to Di Martin, the producer of this great program and she may be able to help you.
DrL :
12 Jun 2011 7:01:38pm
I work as a medical registrar in a tertiary teaching hospital. I am not familiar with any of the cases or hospitals that were mentioned in the programme; but the cases and discussions around them had a familiar nature to situations I have dealt with myself as part of various medical teams.
I thought it was disappointing that the programme left the impression that the two younger doctors involved in the first case were continuing to advocate for forms of active treatment. There are other reasons to discuss forms of active treatment with the family in meetings such as these, including actively clarifying with the family exactly what they understand active and palliative treatment to entail. Clarifying the natural history that a disease process is likely to follow without certain forms of intervention and ensuring the family understands and accepts that is a crucial part of this process and is not equivalent to advocating for active treatment.
Moreover, I think the programme failed to convey how dynamic, both empirically and ethically, the dying process of any one patient can be. The guiding ethical principle in medicine is 'first, do no harm'. Harm can be caused both by active and withheld treatment; sometimes a non-harmful active treatment becomes harmful later. Furthermore, interpretating what constitutes harm at all is often difficult. Are we concerned with present harm or future harm? Clearly, advanced care directives give doctors great assistance in understanding what the patient would consider harmful, and I refer to this information every time it is available. But, the issue of whether they are legally binding seems to miss the point: as both action and omission can cause harm, the primary concern for any doctor is to assess, using the patient's personal wishes and known medical state, which actions or omissions will benefit or cause harm to the patient. An advanced care directive provides a fixed point of reference in this assessment, but many other factors are dynamic and they can dilute or concentrate the importance of an advanced care directive during the course of a patient's treatment, both in hospital and in the community. Perhaps the mistake of too many doctors is to overlook that medical treatments often need to be reassessed as a patient's condition changes and the 'grey' areas of their condition becomes more 'black or white'. Nonethless, these judgements can be difficult for doctors to make, and for families to understand, which is why a constant and respectful dialogue is necessary to ensure that no harm comes to the patient, even if, or especially as, they are dying. Dying is not a linear and predictable trajectory; it is a dynamic process, for the patient, the doctors, nurses and family. There are ethical duties to respect and challenging judgements to be made, and I would be loathe to see us abrogate these due to the existence of an advanced care directive.
Finally, I want to acknowledge the skills of my
Joanne :
12 Jun 2011 7:58:40pm
Thank you Di for presenting this difficult topic-I have worked as a nurse for over 30 years and could relate to the powerlessness patients and carers feel when dealing with the health care system in NSW.
Recently I watched my Dad die of Bowel Cancer and as an Advanced Practice Nurse in Cancer Care felt we were in a good place to Navigate the local System, but I found a Palliative Care service in name only. Nursing care was delivered in a piecemeal and disjointed fashion not as described at the end of your program!
He had lived his 74 years well and had no co-morbidities- And wanted to be as independent as posible- But with a prognosis of a few months and becoming confused, we were faced with a nursing home or home with my mum and minimal support. There is no hospice available in Rural NSW and in hospital you don't get to see a Doctor who knows you- just one how thinks he knows your disease.
A health system that lacked Care, coordination and resources for the dieing.
CazMac :
12 Jun 2011 10:35:08pm
I listened this morning with not only great interest but with deep sadness. My brother passed away a week ago. The victim of a health system that has completely lost it's direction and has placed, patients and family members into a living nightmare.I feel that not only have I needed to be my brother's guardian even though he had one in an official capacity ,but also his advocate and medical carer.There have been so many times when I have felt at a loss as to where our family could turn to gain help and advice. Over the past eighteen months, the family have often met with indifference , disdain and of late damage control and in one instance unsolicted verbal abuse. Submissions requesting additional assistance be given to my brother would be written and sent to the relevant authorities, presumably considered , but nothing ever changed. My brother was placed into two different nursing homes after leaving hospital with an unresolved bowel complaint.This apparently was still the case eighteen months later when he passed away weighing just 50kgs.
I could relate very well to the other contributors on this morning's program. Patients/ residents are left without sustenance, families are not even informed that an eating problem exists until it becomes apparent to them that sudden and dramatic weight loss has occurred or that swallowing or chewing is a problem.Changes to his diet only occurred at our request and in light of the outcome, this measure was already doomed to fail. Would any decent human being knowingly allow a loved family member to suffer like this? Medication is sometimes inadequate and poorly administered.Patients are seemingly at fault if they don't eat and classed as aggressive or unco operative and now in my brother's case it appears that he was already in the last stages of a terminal illness.The dementia card is often played to suit the occasion and we were told that patients can't be force fed. Do those who find themselves in this situation, who may even be slightly cognitively impaired, simply fade away in a corner and become just another statistic of an aged care system that is not coping and has lost any sense of treating others as they would wish to be treated themselves? My brother so obviously couldn't eat over the past several weeks and must have been in excruciating pain, not only with an incurable,infected pressure sore, but also after reading his death certificate, we now know that he had cancer. We have yet to be told when this was discovered and why we were not informed or if any other treatment could have been administered. We did need to plead for tests to be done or followed through and in his case the follow up did not take place, even though all relevant reports and scans were provided to be assessed six months ago. We were assured that arrangements and referrals had been made. My brother was even sent to a major public hospital at our request and with a referral from a doctor who was concerned a
Linda :
13 Jun 2011 9:25:42am
Life is about learning how to die for as soon as we are born we start running towards our death. Anguish, heartbreak and grief are what we see when certain people have lived their lives in distraction from the inevitable. Suddenly reality bites and we realise the futility and meaninglessness of how we have lived our lives.
You can make all the directives you want but unless you have practiced how to die then it doesn't matter where you end up. Dieing is dying no matter what the situation.
Thelma :
13 Jun 2011 2:29:28pm
Linda, we and everyone else accepts dying. The issue here is the prolongation of the dying process.
We have evolved an armoury of sophisticated devices (eg. pacemakers, stents, transplants etc.) and Big Pharma is laughing all the way to the Bank with the $m's worth of drugs used to keep dying patients alive, that is the problem. Those devices and drugs are great when they can keep a person alive, to go on to a fulfilled life, but to give a dying patient those treatments is akin to abuse. Advance Directives are worded such, that the dying person is protected from invasive treatment which prolongs their life, when they are, in fact, dying.
Linda :
13 Jun 2011 4:28:01pm
Point taken and thanks Thelma!
Thelma :
13 Jun 2011 5:25:10pm
My pleasure Linda. Thank you
for responding as you did.
Winnie :
14 Jun 2011 9:28:16pm
Great response, Thelma .. "...Big Pharma laughing all the way to the bank.." is most likely the reason AMA is against assisted suicide.
Thanks for putting great words to my thoughts.
Thelma :
16 Jun 2011 8:02:08am
Thanks Winnie, but the AMA, in the case of Big Pharma is way down the list of those against assisted suicide.
The lobbyists for Big Pharma, and their mates in Parliament are the ones to Watch.
16 Jun 2011 11:41:14am
I second these comments .... Well said, THELMA.
Thelma :
13 Jun 2011 11:14:09am
Thank you Bill for the reference.
I notice now, too late, that the reference appears on Background Briefing's home page for that Paper.
Joanne, Hospice care in rural NSW is available where I live, because a group of citizens got together 15 years ago and brought it into being.
The Church at one time, provided a very competent, caring, and supportive Hospice Care component, but, alas, no more. I would like to mention at this point about the rush of Big Business, to buy into the Nursing Homes, i.e. Aged Care Facilities in modern parlance,
and we all know that these new
Owners, are all about shareholders, not patient care. Maybe Background Briefing could have a look at all the vested interests around death and dying in 2011?!(Apologies for straying Off Topic here)
At the end of the Program, Dr. Ken Hillman told of his visit to Oregon in the US, and how, the provision of decent Community Health Care had exploded into being. I suspect that someone had Done the Numbers, and realised it was cheaper to keep people at home (where they want to be in any case), than "taking up a bed in an institution".
Whilst the motivation was mercenary,
the result was that excellent care was provided, at home. How can we lobby our government to see the wisdom of this Move?!
I mentioned in my first Comment about my association with Exit International. This discussion is not about euthanasia, which I believe has a place, but less people would be considering this as an option, if they were not "terrified" of being "incarcerated" (their words) in a nursing home or other institution, away from home, with staff and doctors whom they did not know. Many of the members told me that their fear of being incarcerated, motivated them to find ways to end their lives before some
doctor or family member, "Put them away", and all of them had filled out Advance Health Care Directives and Guardianship documents, just in case.
Gretel :
13 Jun 2011 2:57:14pm
Thank you so much for this excellent programme.
Having some years ago completed an Advance Health Directive (Qld) in the understanding that this is a legally binding document, I find it both terrifying and completely unacceptable that apparently medical staff are not necessarily adhering to this clearly expressed and witnessed document.
I have no family and am dependent on three people whom I've appointed Enduring Power of Attorney. I can't see what more any of us can do than make this level of provision to ensure we are not kept alive with unwanted treatment.
There is an urgent need for a national policy, a register of all advance directives, and above all, the legal clarity that removes from any medical practitioner the capacity to override the clearly expressed wishes of someone who has completed the document in conjunction with his/her treating general practitioner, the latter having duly attested to the patient's soundness of mind and decision making capacity.
I endorse the suggestion from another poster for this subject to be taken up by Four Corners so that there is more chance of it reaching a wider audience.
We need to deal with the widespread issue of what is almost a collective denial about our dying. Leaving our instructions for our final medical care is probably more important than making a Will to dispose of our material possessions.
My heartfelt appreciation to the Background Briefing team for such an insightful and well researched programme.
Charlie :
14 Jun 2011 12:01:14pm
I support your call for FOUR CORNERS to take this up, not wishing to demean a superb coverage by BB
Joyce :
14 Jun 2011 12:22:54pm
I too support your request for FOUR CORNERS to essay the issue of voluntary euthanasia.
Thelma :
14 Jun 2011 8:03:04pm
Joyce, I think you mean, Who decides How we Die. By all means, ask Four Corners to take up the VE cause, but I hope they will take the issue at hand as well. This program is not about VE, which has been well documented and argued in recent years. Who decides how we Die, is as important, if not more important, because the prolonging of Dying terrifies most people, and some, as I wrote in a previous, consider VE as an option, when they need not, if End of Life Care was more sympathetic and clear cut. Forgive me cutting across your well-intentioned comment like this.
Joyce :
14 Jun 2011 12:31:26pm
I do not want to be sentenced to live for the rest of my natural life, when clearly, I've made a request to die with dignity.
Let those who are brave enough to settle for palliative care receive this. Let those who are brave enough to ask for voluntary euthanasia also receive the assistance they need.
Surely, in a democracy, this must be possible. Thanks for your program, Background Briefing. Regards. Joyce.
Patricia Rayner :
15 Jun 2011 9:51:38am
I consider it my right to say I do not my life prolonged. As a nurse I have seen the pain and humiliation that helpless old people endure once their health is compromised. The Oregan system is very good. It is probable that I will have a cerebral haemorrage due to my Blood pressure and I want to be let die, hopefully at home
Patricia Hopkins :
15 Jun 2011 10:24:04am
name: Patricia Hopkins
comments: My husband Richard and I had obtained Advance Directive and Enduring Guardianship forms many years prior to his sudden illness in February 2004. We were able to include the State Guardianship Board and the State Guardian became our second line guardian if the necessity arose. In late February Richard suffered a catastrophic cerebellar bleed which required immediate surgery and admission to intensive care. Whilst there was some initial improvement, it became obvious that he would only survive in a severely disabled state. After the initial insult he was conscious and capable of understanding the severity of the situation. The frequent interventions and the side effects of treatment rapidly made his life intolerable. I had notified the State Guardian of the situation and was assured that, if the situation arose, she would support Richard's decision to cease treatment with a court order. When we notified the staff that we were deciding to cease treatment there was resistance from the treating team. I explained to them the implications of this and informed them that a court order from the State Guardian would be forthcoming if they continued to block Richard's intentions. They reluctantl;y agreed to cessation of active interventions, Richard was transferred to the Palliative Care Unit where he died two days later, pain free and peaceful.
My advice is to get the State Guardianship Board involved from the very beginning, it carries a much bigger stick than mere loved ones and next of kin.
Bill Alcock :
15 Jun 2011 11:29:22am
I find it very difficult to believe that anyone with an ounce of compassion can deny those who have lost quality of life be it degeneration or terminal illness the right to make a choice for a dignified and peaceful death provided this has been documented in an advance care directive whilst of sound mind.
I would like to have a tattoo on my chest If I should lose quality of life please let me die with dignity"
I am an 86 year old world war 2 veteran and it would give me great peace of mind if I could get medical assistance to die in a dignified manner if I should lose quality of life. It is my firm opinion that enforced prolonged confinement when quality of life is lost is a fate worse than death.
Times have changed in my grandparents day there were no nursing homes, my parents cared for them at home, the family doctor came every other week to check on them, provide prescriptions and when they lost quality of life he asked for a family conference and was given permission to ease them out with analgesics, this was just compassion there was no mention of euthanasia.
My strong belief in the right of everyone to make a choice for euthanasia should they lose quality of life has been influenced by two family occurrences.
The first a heavy smoker with cancer of the throat who deteriorated quickly, I could hear him gasping for breath when I entered the hospital entrance, he could not talk, did not recognize anyone and was being fed intravenously, fortunately I was able to persuade a sympathetic doctor to ease him out in a dignified manner.
The second a mate who served with me in the second world war and he always expressed the wish not to be confined to a nursing home, his doctor put his arm around him in my presence and said to him "Don`t you worry Tom when the time comes I will ease you out". This gave Tom great peace of mind , however Tom was moved into a nursing home and was given medication to stop him wandering at night and crying out disturbing the patients. He deteriorated very quickly became incontinent bowels and bladder was bedridden, unable to communicate and did not recognize anyone. When I approached his doctor for help he said "sorry I cannot do anything for him now as all medication in a nursing home has to be recorded". Tom was allowed to lie in his bed in this state for 15 months, an extremely cruel fate for someone who had served his country with distinction.
In conclusion let me make it clear that it is not my intention to impose my views on anyone, however I consider euthanasia should be an option for those who have documented their wish in an advance care directive.
Joyce :
15 Jun 2011 4:46:43pm
Being sentenced to die against one's will is as appalling as being sentenced to live against one's will.
Respective governments may yet have the nous to support those who need to live and die with dignity, by supporting voluntary euthanasia.
Assist those who'd feel comforted by palliative care as much as those who'd
feel comforted to know that there is another way out of pain.
Advocates for a life regardless may yet acknowledge the altruism of a life, and a death, with regards.
vicki :
19 Jun 2011 12:53:19am
Hi I am a palliative Nurse in a rural setting, I believe that the advance health directives need to be more broadly talked about and supported. All palliative patients, those whose treatments are no longer curative but for allievation of symptoms, need to discuss their wishes with their Doctors,,often there are many specialists and GP's, their nurses, and families... so they can truely make decisions on an informed level. It is paramont that the health professionals fully explain, and ensure that the patient and next of kin, fully understand what their choices are and what their decisions mean. Yes they have a right to refuse any intervention, or accept it..... but they need to know the consequences of the choices made..
The Burden of starting/ removing/refusing treatment ie artifical feeding, or assisted breathing machines, chemo, radiation,
etc...... are but a few issues...
I have nursed over 25 years. When patients and families make informed choices about end of life care it really makes a difference to how they live their life and approach death
Coco :
19 Jun 2011 11:05:55pm
The post from Dr L is to me a typical example of Drs not getting it. Its full of mealy mouthed evasions, excuses and petty delineations - all with one outcome and one only - which is to disrespect the patients and/or their guardians cystal clear wishes and the Drs subsitute what they think best.
It is perfectly obvious to me what we control our own bodies. After all, what are all the battles we fought against slavery, physical abuse, rape, sexual and other abuse all about? They are about a person claiming sovereignty over themselves. Dr L's whitewashing of the clear facts and attempts to create distinctions when in truth none exist except in his fevered imagination do him and his profession no service. I see him as the archetype of the very problem this show was set up to expose. No doubt he thinks he is a great person and Dr.
mumma :
27 Jun 2011 3:49:29pm
Actually I think DrL's response is more an example of the exact problem that was raised at the start of the program: Doctors are not taught how to stop treatment and how to let go.
I hope that by the time he or she finishes his or her fellowship s/he will have a clearer understanding of the complexities of the situation.
My own experience of end of life decisions is that doctors who are not involved in critical care 'get it' even less than those who are, and medical registrars at teaching hospitals are exactly the sort of doctors who earnestly want to continue treatment simply because that is what they are taught to do. They are not told to question the futility of a treatment, and this is less about 'sovreignity' than an understanding of medical necessity and futility.
Mulga Mumblebrain :
03 Jul 2011 10:44:45am
The last few weeks and months of life are the most profitable for the medical-industrial complex of BigPharma corporations, private health insurance, private hospitals and doctors and all the ancilliary industries of the complex. They don't 'let go' because that would be deleterious to profits, which, by Holy Market decree, must always get bigger, no matter how great the human suffering involved. We see it most cynically and cruelly in the manner that BigPharma and its PR stooges manipulate dying people to have some hugely and larcenously over-priced medication subsidised by Government to buy a few week or months more existence, if you're 'lucky'. The drug companies certainly are.


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Cover for 1977 Trans Am
Reviewed By Darcy E (Babb, MT) Reviewed for a 1977 Pontiac Firebird —6/21/2015 7:44 PM
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subset: commoncrawl


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Glenn Dale Golf ClubRead MoreOn its perch high atop Prospect Hill, the resplendent manor house stands overlooking the 18 holes of Glenn Dale Golf Club as they unfurl outward among rolling hills and dense foliage. Though the house has been there since 1742, it wasn't until 1956 that the course was carved around the base of the mount. Terrell Brazelton oversaw the building of the course using a design by George Cobb, who later became the resident architect at Augusta National Golf Club and the author of many of its architectural renovations. Today, golfers find their short games put to the test by dramatically sloped greens, a difficulty encountered by many top players when the course hosted a U.S. Open Qualifier in 1994 and just one player broke par. As players herd their golf balls throughout the course, they tread over land steeped in American history. The fairways and greens reside on a tract that once served as a meeting place for Native Americans. Course at a Glance: * 18-hole, par 70 course * Total length of 6,282 yards from the back tees * Course rating of 70 from the back tees * Course slope of 115 from the back tees11501 Old Prospect Hill RdGlenn Dale, MD US


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Bill Gross thinks conditions are ripe for a liquidity crisis, and he points a finger at his old firm for its potential to be at the center of the storm.» Read More
A former technology consultant jailed in the federal crackdown on insider trading at hedge funds called Business Insider early this morning to ask for help finding a lawyer.
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