The Good Death
Sunday 23 November 2003
Most of us will have plenty of time in which to live with our own dying. Modern death in the West is becoming a drawn-out affair, as death is likely to arrive gradually, via the degenerative diseases of old age, putting us into institutional care, and into the hands of health care professionals. And today's health care professionals may have little training or relish for the job of caring for the dying. Encounter this week explores what it means to die well.
HOSPITAL CORRIDOR/NURSES WALKING
Nurse 1: At least he tries….
Nurse 2: Yeah, he’ll try. And he’s in so much pain he’s sweating with it, but he’ll keep trying. Yet you’ve got someone like her, I mean……
Rami Sivan: The first stage, we’d metaphorically describe it as the earth element sinking into the water element, which describes the body becoming very heavy and immobile. Then we describe the water element merging into the fire element, which is the stage at which all the exudates and secretions start leaving the body. Then the next phase would be the water blending into the fire element, and this describes the phase at which the core temperature of the body rises. Then the next phase would be the fire element merging into the air element, which is the classic death rattle that people get, and the disturbances of the breathing process. And then the final stage would be the air element merging into the space element, which is the moment of dying.
Child: I sometimes wonder if I would know it was happening, if I would know I was changing, if it would hurt or be a warm feeling, if I would feel any change. I sometimes wonder if I would know it was happening, if I would know I was changing.
Margaret Mines: I say everybody has a spirituality, some people have a religious background and some people do not. And freedom from physical pain is very possible, with modern medication, and with a balance of drugs and so on. But quite often, pain is more than physical pain. Quite often it’s spiritual pain – in whatever broad way you like to say that. And that’s something that a lot of palliative care teams don’t really know how to handle.
David Rutledge: Welcome to Encounter – David Rutledge with you. And this week: dying well. We all pursue various ideals of the good life, but few of us spend nearly as much time contemplating or providing for a good death. Our modern cultural inclination is either to romanticise the dying process, or to avoid contemplating it altogether. And that’s unfortunate, because where most of us are going, dying well is going to involve some careful preparation.
Liz Turnbull is a psychotherapist, with a long-standing interest – and a record of research – into how we die.
Liz Turnbull: About 80% of us Australians will die in an institution, like a hospital, and increasingly in intensive care. So death is now a highly technologised and managed event. So once you enter into a hospital, you enter into a trajectory of certain types of decision-making, and you can end up in a situation where your dying can be indefinitely deferred while you’re on life-support. So you could say that dying nowadays, due to medical technology and the sorts of routines and practices – your dying has to fit into that hospital culture. So once you enter into a hospital, you’re entering into an environment which can make your dying very much an alienated and isolating experience.
David Rutledge: Liz Turnbull was recently senior researcher on an Australian Research Council project which looked at management of the dying in the intensive care unit of a major Sydney hospital.
Liz Turnbull: What I noticed was that on the ward round, this posse of doctors would come around, and they would come to the end of the bed – where there was someone where it was acknowledged that this person was dying, and they were withdrawing treatment – that there would be this kind of silent moving around, and softly-spoken “Mrs So-and-so is going to the wards, there’s nothing more we can do for her”. You know, in some research, they talk about how those who are dying become a “discard” in medical culture, and I’m not sure I would go as far as to say that. But there is this sense that once they can no longer cure a person, doctors feel that they have to move on to those that they can salvage.
There is an awareness of death all the time; I don’t know that you can really say it’s a “denial” of death, but it’s more somehow a disavowal of death. It’s like you see it but you don’t see it, because you don’t enter into a relationship with it. You set up all your practices and routines around it, but you don’t allow yourself to become really intimate with the potential of death.
David Rutledge: How much room is there in clinical care, in the world of medical professionals and specialists, for that intimacy to develop?
Liz Turnbull: Well, I guess there isn’t – and that’s really unfortunate – because of the nature of routines, and the professionalisation of practices around dying: the management, the workload, there are all sorts of factors why you can’t really create that kind of intimate space. And if you were to imagine yourself in a hospital or in an intensive care unit: it’s a very public space, there are cubicles with curtains, everything can be heard. And also there are time pressures. Nurses have to get through their workload, and they have to be able to organise and manage their time. And sometimes they are just more focused on getting through what they’ve got to do, and they just don’t really have the time to sit with a patient.
For doctors, they’re so very identified with the goals of medicine, and medicine is to save life, to bring about cure. So death is seen as a failure. And I think that doctors don’t want to see a death happening – as of course you wouldn’t.
Nurse: Squeeze my hand for me…..
Peter Saul: The use of the word “good” to describe death is actually quite tricky. All death, to one degree or other, is quite horrible. I mean, it’s a bereavement for those who aren’t dying, and sometimes very unpleasant for those who are. So to call it “good” would perhaps be inappropriate.
David Rutledge: Dr Peter Saul, senior intensive care specialist at John Hunter Hospital in Newcastle.
Peter Saul: I’ve worked in intensive care for about twenty-five years, so I’ve probably seen between two and three thousand people die, personally. And I think you could say that an appropriate death, a suitable death, a death consistent with someone’s values in life, is definitely possible – and that would be closer to the meaning of euthanasia than “good”.
I think it’s bound up with the idea of having something about you, as an individual, honoured during your dying process. So when you use words like “dying with dignity”, I find that enormously difficult to understand. I think what it means is: dying with appropriate respect for who that person is, or who that person has been up until this point. And it’s respecting their wishes, or the way they may have wanted to die, that makes a death dignified. People get confused, because they seem to think it means the same thing as “aesthetic” – in other words, where you just pass away quietly in a coma. But a dignified death might mean going down screaming, if that’s the way you lived your life.
David Rutledge: You hear people say often that they don’t fear death as much as they fear dying. And there’s this general perception abroad in the community that we’re increasingly likely to die in a way that we don’t want to die – inappropriately – particularly given that we’re increasingly likely to die in hospital. Do you think that’s a justified perception?
Peter Saul: I do. I think the drift over the period since the Second World War has been toward dying in institutions – mostly that’s nursing homes and hospitals – and that’s really not slackened pace in this country at all. So you’re much more likely to die now outside your own home, and in the care of strangers, than at any time in history. So I think people have grounds to fear not so much that their death will be unpleasant, but out of control, and in the hands of strangers, and take a form which they could never have imagined, or never have wished for.
David Rutledge: What are the obstacles to dying with a measure of autonomy in hospital – what are people up against?
Peter Saul: I think they’re up against a lot, actually. One of the things I think they’re up against is that hospitals become something of a sausage machine for people who are admitted. It’s actually quite difficult to impose your own will on what occurs there, subsequent to your admission. I think all the people caring for you feel that they have to do their best for you. And to most people, that would mean to attempt to keep you alive under all circumstances – which may not be what it was that you might have wanted for yourself. The likelihood of being asked is relatively low, at the moment, so it’s unlikely that your own views on this will have been canvassed in anticipation.
David Rutledge: Why is it unlikely that your own views will have been canvassed?
Peter Saul: Well, the difficulty is that nobody really has a conversation about death up until the very, very last minute. And by the time, for instance, they come to my intensive care unit, most of my patients are unconscious, they’re unable now to tell me anything much about what they might or might not have wanted. And this is just a feature of the way things work at the moment; these kinds of conversations don’t happen.
There was a piece of research recently, showing that the time at which the most likely conversation about dying takes place, is twenty-four hours after admission to an intensive care unit. Which is kind of late, I think.
David Rutledge: Is it a conversation that you yourself often initiate?
Peter Saul: I initiate it with all people who are capable of carrying a conversation out with me, before I admit them to the intensive care unit. I say to them “look, this is the situation you’re in, these are the options that we can do for you. These are your chances, this is how unpleasant it might be- do you want all this or not?” And that often is the trigger for a discussion about how people might want to die. But even then, the D-word doesn’t come up any more than it absolutely has to.
David Rutledge: Intensive care specialist Peter Saul.
Doctor: Can you hear me? Hello, how are you feeling? You’ve got a headache? Where’s your headache?
Margaret Mines: I remember one man telling me that he’d been in hospital for quite along time. He’d had surgery, and he’d come back to intensive care – and I called in on my way home, just to see how he was. And the young doctor came in to tell him that the results were really bad. And in his doctor way, he told Charlie that things weren’t good, and no, there was no – you know, they weren’t able to do anything really. And Charlie popped his eyes open, and looked up and said “does that mean I’m going to cark it?” And the doctor didn’t know where to look or what to say. And he ummed and ahhed, and I said “yes Charlie, you’re going to cark it. And soon”. And the doctor exited with great glee.
David Rutledge: Sister Margaret Mines, pastoral carer at St Vincent’s Hospital and the Sacred Heart Hospice in Sydney – who sees that even among experienced medical professionals, the contemplation of dying can still somehow be scrupulously avoided. It’s a modern malaise – “modern” in the broad historical sense of the word – and it’s one that was well understood by Leo Tolstoy, who in 1886 wrote his astonishing short novel The Death of Ivan Ilyich, in which a respectable bourgeois lawyer is brought face to face with the unspeakable fact of his own demise.
Reader: They were all in good health. It could not be called ill health if Ivan Ilyich sometimes said that he had a queer taste in his mouth, and felt some discomfort in his left side.
But this discomfort increased and, though not exactly painful, grew into a sense of pressure in his side, accompanied by ill humour. And his irritability became worse and worse, and began to mar the agreeable and correct life that had established itself in the family. Quarrels between husband and wife became more and more frequent, and soon the ease and amenity disappeared – and even the decorum was barely maintained. Scenes again became frequent, and very few of those small islands remained on which husband and wife could meet without an explosion.
After one scene – in which Ivan Ilyich had been particularly unfair, and after which he had said in explanation that he certainly was irritable, but that it was due to his not being well – she said that if he was ill, it should be attended to, and insisted on his going to see a celebrated doctor.
He went. Everything took place as he had expected. The doctor said that so-and-so indicated that there was so-and-so inside the patient, but if the investigation of so-and-so did not confirm this, then he must assume that and that. If he assumed that and that, then.…….and so on. To Ivan Ilyich only one question was important: was his case serious or not? But the doctor ignored that inappropriate question.
Peter Saul: Hospital staff in general are ill-prepared for the exposure they currently have to the numbers of dying people we have. You’ve got an ageing demographic, people are coming into hospital to die, and I think we’ve been extremely ill-prepared for all of this. For instance: medical students on average, during an entire medical training, would see no people – or one person – die, in the whole six years it takes to train. There’s very little exposure in training for this.
David Rutledge: Was that your own experience as a med student?
Peter Saul: Oh absolutely, yes, I never saw anybody die as a medical student. I’d only ever seen an elderly relative die, that was the only exposure I’d had in my whole training. Likewise, when I did all my exams – and I’ve done lots of them – there was never any part of that that was related to communication skills or talking about dying, or initiating these sorts of conversations.
David Rutledge: So where did you pick it up?
Peter Saul: Well, obviously given that between fifteen and thirty per cent of all my patients die, I sort of got forced into it, really. But I do think that we have our own internal issue at stake here. I mean, I’ve developed my own conversation with myself about death, which is why I’ve felt more able than perhaps some of my colleagues to enter a conversation with others about it. So I think that the real issue for health care workers, if they choose to go that far with it, is to recognise that this threatens something profound in their own internal being, when they have to deal with people around them dying – often, people the same sort of age. You know, I see patients come in who are my age, I see children come in who are the same age as my children – the defensive barrier you might want to set up just won’t survive that kind of thing. So you’re really obliged, I think, to have your own conversation about what your own death might mean to you, and how you might want that to be.
Liz Turnbull: When someone is dying, their body is falling to bits. The order of the life that they’ve known is falling apart, the family is dealing with the chaos of their own feelings and the loss of that person, and I think that’s part of what’s so frightening about it – everything is coming apart. There’s a messiness about dying. And it’s personally confronting, because when you’re looking at the dying person in front of you, you’re looking into a mirror. And you know that one day, you’re going to end up like that.
David Rutledge: Liz Turnbull – and before her, Peter Saul.
Religious traditions often demonstrate how taking control of one’s own dying, and putting suffering into some sort of meaningful context, can be helped by the use of ritual, which formalises some of the chaos while everything’s falling apart. But of course ritual can be very difficult to incorporate into clinical care. Dying at home makes it easier – especially if you’ve got a family and a community to follow you some way along the path.
Rami Sivan is a registered nurse – and he’s also a Hindu cleric, working in the western suburbs of Sydney.
Rami Sivan: Ritual setting is easy to incorporate into a hospital setting when you have a chronic illness and the person is located in a private room, off the corridor. But obviously when they’re in an intensive care ward, connected to all kinds of machines, surrounded by doctors, nurses, intensivists, other patients, other visitors – then it’s almost impossible.
If the death is a long prolonged death, then we like to chant certain texts, so that the dying person hears the name of God recited constantly. Because according to our belief, it’s the final thought at the moment of dying that conditions your next rebirth. So we like to chant the name of the divine – different names of the gods – to try and bring that awareness to the dying person. So obviously if you’re sitting for days on end in an ICU, it’s impossible to do this. But usually if it’s in a home setting, the family will arrange for twenty-four hour chanting, until the person dies.
David Rutledge: And along the way, what sort of issues come up when you’re dealing with the leaving of the bodily secretions, for example. You get all sorts of issues there, I imagine, with pollution and ritual impurity: how is that dealt with?
Rami Sivan: In Hinduism, dying is an extremely polluting process. And the family of the dying person is ritually polluted for ten days, which is the period of mourning. So we have very very strict rules, where the mourners sleep on the ground for ten days, the men don’t shave, none of the family use perfumes. Nowadays a lot of the funeral parlours allow us to bring the bodies home, because in our death ceremonies, there’s a lot of interaction with the corpse – again, to reaffirm the fact of impermanence, and to reawaken the understanding in each one of us that this is our ultimate destination, we’re all gong to end up as a corpse. And this is reinforced by having all the family attend the funeral ceremony: all the children, all babies, everybody attends, everybody interacts with the corpse.
David Rutledge: What’s happening there, what kind of interaction?
Rami Sivan: The corpse is exposed. We get family members to go and actually wash the corpse, dress the corpse, place it in the coffin – by law there has to be a coffin – that coffin is then brought home, placed on the floor, and the corpse is exposed. The family then sits around the corpse, and we perform our funeral ceremonies. Rice, the family all put rice in the mouth of the dead – again, it’s touching, interacting with the corpse – and none of this is covered up with makeup, or flowers, or pretence of sleeping. It’s “this is death”.
Michael Barbato: I think we’ve changed. A hundred years ago, people were not only familiar with the word “death”, but they’d bury their own loved ones. It was not uncommon for one or two people – particularly children – to die in a family, and it was the parents who actually tended for them around the time of death, and were involved in their preparation for death. So as much as they grieved, just as we do, they were familiar with it, they were comfortable with it, and they could be with people around the time of death.
David Rutledge: That’s Michael Barbato, who’s a palliative care physician at the Braeside Hospital in south-western Sydney. He’s also the author of a recent book, entitled Caring for the Dying.
Michael Barbato: We – when I say “we”, I’m particularly referring to the community at large, but also the various professional groups – find it very difficult to relate to someone who’s dying, because we don’t see it very often. Members of the community don’t; they’ll be lucky to have met someone who’s dying, and certainly it’s very uncommon to have sat with someone who’s dying. That discomfort is unfortunately present within health care institutions – because again, while death may be common, it’s seen as a failure of medical treatment, rather than a very important stage in that person’s living.
David Rutledge: It’s interesting you mention that – in an article you’ve written, you quote Tolstoy’s story The Death of Ivan Ilyich, in which the dying Ivan is tormented by this pretence that he’s not really dying. He’s surrounded by doctors and people telling him he’s just sick, and he just needs to rest quietly, and nobody actually acknowledges that he is in fact dying. Would that be an experience common to many people today – who are dying in hospitals, for example?
Michael Barbato: It can be, and it may in fact occur by design, but it could also occur by default. Because if the focus is o the disease, and on trying to get it all right – get the numbers rights, get the x-rays better – then that’s what the conversation’s about. There was a wonderful book written by Grahame Jones, who died of a malignancy, and the book’s called Magnanimous Despair, and he made the very point that when you have an illness, the whole focus of conversation is on health, disease, tests, treatment – and nothing about the fears associated with an illness, the losses associated with having to give up work, and losing strength so you can’t do the things you normally enjoy. And these people very rarely get the opportunity to talk about his aspect of their health care.
What I would like to see is the emphasis to get back to the point where you’re actually dealing with the person – who may have a life-threatening disease, but their response to that disease is equally as important as their physical response to the treatment.
David Rutledge: Palliative care doctor Michael Barbato.
In the modern West, learning how to die well means learning how to die slowly. There was once a time when infectious disease ensured a relatively quick death for many people – but today, we’re more likely to succumb to the degenerative diseases of old age. Which means most of us will have plenty of time in which to respond to our own dying.
Here’s Sister Margaret Mines – pastoral carer and director of the Tree of Hope centre in Sydney.
Margaret Mines: Lots of people talk about the pain that’s in their body, and the changes that are in their body, and the out-of-controlness that they feel. They talk also about the pain of loss – not just of themselves and the life they hoped they would continue to have, but the loss of the ability to do things for their family, or to be there for their family. And the terrible pain of separation of someone that they love dearly, like if it’s a couple that have been together for many years, or a parent whose children – however old the children are – they’re going to miss that, and they going to be missed, and that they’re causing pain to their loved ones.
It’s probably one of the loneliest times of anyone’s life. Because you are alone; you are alone, it is your pain, it is your feelings that are really going through your mind – not someone else’s quotes, and not someone else’s preoccupations with you; it is your thinking about yourself. And why is this happening to me? I don’t know the answer any more than anybody else does. There is no answer to it.
Rami Sivan: The pain is part of the process. We obviously don’t subject people to undue pain, but we recognise that pain is part of the karmic process, and that one needs to undergo this pain in order to pay back moral debts that we’ve incurred in the past.
David Rutledge: Registered nurse and Hindu cleric – Rami Sivan.
Rami Sivan: We look at pain in a very constructive way, in that the way that we die, and the amount of pain experienced in the dying process, is determined by your karma. And the karma obviously is stuff that you have generated through your own actions in your previous lives, or in this life itself. So the suffering in death is not seen as totally negative, or without meaning – it is seen as meaningful, in that it is payback for stuff that we have done in the past.
David Rutledge: So would you say then that if pain is the thing that we’re almost afraid of, the kind of Hinduism you practise makes a virtue of it?
Rami Sivan: It does make – well, not exactly a virtue of it, people don’t actually relish and rejoice in pain. But it gives it meaning. Whereas in a tradition where you believe that everything is the will of God, for example, and you think “well, I’ve lived a good life, I’ve been a good parent, I’ve been a good son” – whatever – “why am I suffering?” Why do good people suffer? is a dilemma that always raises its irreconcilable head in the Abrahamic coalition. Whereas in Hinduism, Buddhism, Jainism, we know why we’re suffering; it’s because we’ve done something in the past, and this is payback.
I use the metaphor of using facilities, like going to a restaurant and ordering a meal, and then not being willing to pay the bill afterwards, or whingeing about the bill. Or using the electricity, and all the public facilities, and being angered by bills. So when the bill comes, you should enjoy paying it just as much as you enjoyed actually accumulating the debt. You did the deed, now you’re paying the price for that. So in this way, suffering does have meaning.
Liz Turnbull: It’s a great opportunity to wake up. From a Buddhist point of view, you would actually be wanting to prepare for your death in the course of your life. Plato said something like “practise dying”, that you should live your life as if you were dying every day – because in fact we are dying, moment by moment. So it can be an opportunity for yourself to extend love and compassion to others, and it’s an opportunity for others to do the same to you. Any death is an opportunity for that. You know, there’s something about death that it so extraordinarily intimate, if you allow it to be, where you can really see and feel the vulnerability of a human being, when they become so dependent. They are helpless in their beds, and you know, your heart hopefully will just go out to them. And in that moment, there’s that opportunity for compassion – and, I think, for recognition of the suffering of all.
David Rutledge: Sydney psychotherapist Liz Turnbull.
Liz Turnbull: A few years ago, I had this wonderful privilege of looking after a very good friend of mine, Norma, who was dying. I was staying at her place wen she was diagnosed, and I looked after her for the six months of her dying – I helped her husband look after her, and then her family. And this was really quite a learning experience for me. Because I recognised how really, you know, I carried this idealised fantasy about a good death. And I was projecting my own fantasy, about what I would like for myself as a good death, onto her.
David Rutledge: What was that fantasy?
Liz Turnbull: Well, it was about – I saw death as this great opportunity for liberation, and for waking up, you know, that’s to be found in the Buddhist teachings. Death is the supreme meditation; it is an opening, and if you’re prepared enough, you can dive into that opening. And so with Norma, I think, I projected that onto her. And I recognised that I had to let her die her own death – just to sit with her, and be with her, and talk with her, and do all the ordinary things of cooking and cleaning, and then eventually washing her, and changing her – and just really respecting how she went through so many different emotions and states. And she didn’t want to die, she wasn’t ready. And she fought her death as she fought in life; she battled her way through it all. And on the other hand, I wanted her to have this long, peaceful, enlightening experience – but it wasn’t like that.
Also what’s happening is that death throws up so many shadows, and you have to confront a lot of your own fears. So even though I’ve been interested in this whole subject area for a long time, I’ve still got a lot of shadowy material around death and dying – as you would have. Because like anybody else, I have this deep attachment to this body, and I want it to keep on going. I’m very ambivalent about death. On one hand I’m very curious about it, but on the other hand, I’m scared about what’s going to happen, the chaos and the dissolution. So it’s quite destabilising to be sitting with someone who is going through lots of anger and shame and denial. And then it’s just the day-in and day-out anxiety, and you’re waiting for the next drop in her capacity to function, and it can set up a kind of hyper-vigilance.
So there’s that, and that’s what can make people tired. And I think also what happens in families – in some families – is that it can bring to the surface some of the underlying tensions and conflicts. That’s another aspect of the chaos of death: there are things that people may need to confront, old buried hurts that they don’t want to confront, but here they are, this is your last opportunity to deal with it if you’re going to.
David Rutledge: What kinds of shadows did looking after Norma throw up for you?
Liz Turnbull: Well, it was interesting for me during that time, because a short time before she was diagnosed, my psychotherapy supervisor was also diagnosed with a terminal cancer. So I had two very strong mother-figures, very important women in my life, each going to die.
And also it brought up childhood images, things that I had lost when I was little, things that had died. There was this little baby possum that I had looked after when I was little, and it had died, and it had been my fault. And I had a dream, two weeks before Norma died, where I looked down into a lake, and there was a little possum – it looked like it was sleeping – at the bottom of the lake. But when I looked more closely, it was dead. And it took me a while to realise that this was what this death was doing; it was bringing up all those experiences of loss for me. And I think, you know, that’s great on one hand, because it gives you lots to work with. But that’s also how it can be hard work.
David Rutledge: Liz Turnbull.
As we’ve heard, we’re statistically less and less likely to die at home – most of us will end up in clinical care of one form or another – and most of us there will be dying in the care of specialists who have a lot of power over decisions about what kind of treatment we receive, and particularly over the point at which treatment should be withheld. Does this make it all the more important, then, that medical professionals should also be ethicists? Peter Saul.
Peter Saul: Quite clearly it does. The reason, I think, why we have these issues confronting people so much more now, is that the technological means are there to keep people alive who years ago would simply have died – and most likely just died at home. But now they aren’t: they’re resuscitated, they’re brought into hospital and put on life support – which now can replace almost every bodily function, to be honest; there’s almost nothing your body can do that we can’t do for you – and now we’re left with the situation where we have to decide at what point that’s all hopeless. And that’s an extraordinarily difficult discussion to have, because “hopeless” is not a discussion that you want to have to have. And it also revolves around this idea that it’s futile treatment, and then we all have to agree what the word “futile” means in this setting. So we have to negotiate this on a case-by-case basis. But something approaching 90% of people who die in intensive care units, die as the result of withdrawal of treatment now, so that dying despite all treatment is becoming quite rare. Normally, at some point, we have to call it quits and say “right, at this point we just have to stop”. And that’s now become the norm in intensive care. So this kind of discussion is now taking place anything up to six times a day in my unit.
David Rutledge: What about euthanasia? If you consider that modern medicine employs a whole armoury of life-prolonging technology, is a machine that helps people to die too much for the medical profession to countenance at the moment?
Peter Saul: Well, I think euthanasia is a very challenging issue, and is making life very hard for us in intensive care. There’s quite clearly widespread community support for euthanasia, I feel that we all should recognise that. There’s a poll just taken place in Western Australia that shows that 75% of the public are in favour of euthanasia there. People come to me and say “you wouldn’t put a dog through this, you’d put a dog down, so how come you don’t do that for my mother? Why don’t you just do something to finish her off?” These are requests that are made to us pretty regularly. We have to explain to them that we can’t do that – but that what we can do is make her as comfortable as possible, and not strive to keep her alive beyond what we’re currently doing, and so on – or even to withdraw some of those things, if they’re genuinely not helping her.
But I think the euthanasia debate has been stifled in Australia, and it seems shameful to me, what’s happened in this country, where you have a majority of people wanting to talk about euthanasia, and a lobby group wanting to stifle all discussion. Having said all that, I don’t think doctors should be the ones who are made responsible for euthanasia, because I’d find the conflict of interest there too difficult to cope with. I wouldn’t care to be the one who is given the role of administering a fatal dose of something to somebody deliberately, I would find that completely in conflict with every other value that I’ve been encouraged to hold – and I personally would probably resign if that became something that was expected of me.
David Rutledge: So who should be making the decision there, do you think?
Peter Saul: Well, the only real alternative is obviously that the patients themselves could be permitted to commit suicide. This is what the Oregon legislation Death With Dignity set about to achieve: the doctor is empowered to prescribe a drug, but only the patient is empowered actually to give it to themselves. That imposes a certain distance, and makes it clearly an autonomous wish on behalf of the patient. Even that I have some difficulty with; I’m not unhappy with our current role, which is to provide all comfort, and to facilitate and make comfortable the dying process – but not actually to make it happen. I don’t really want any change in legislation in this country myself – but I would like to see the debate take place in this country, and not to be stifled by lobby groups; that seems to me the worst possible scenario.
David Rutledge: But aren’t you making it happen already, in that you can withdraw life-prolonging treatment? Isn’t that in itself a decision to end someone’s life?
Peter Saul: Yes. I think that there is an extent to which deliberately walking into a room, taking away a life-support apparatus that somebody’s dependent on – for breathing, say – and then walking out, is mercy-killing by another name. Nevertheless, we have this very elaborate defence that’s been set up under the Bland case in the U.K., and various other precedents that say that this isn’t in fact an action, but an omission, and that what we’re actually doing is not any further supporting the person, but allowing them to die from what they were already ill with. That’s a very fine distinction, which I think is very questionable – but nevertheless, it keeps us at the moment with our heads above water in what’s almost a totally murky, grey, legally-uncertain environment.
David Rutledge: Intensive care specialist Peter Saul – and further on the ethics of euthanasia: Rami Sivan.
Rami Sivan: Hinduism permits euthanasia, no problem. In fact, it’s stated in the sacred texts that if a person finds that their body is no longer suitable for their journey on earth – that their spiritual progress towards enlightenment is being hampered because of disease, or decrepitude, or disability –then the individual may make a choice to abandon that body. And the abandoning process is governed by rules and regulations. The preferred method is known as prayopavesa, which means sitting down to fast, a complete fast to the death. This is a respected tradition. This also gives the person who is fasting to death, the opportunity to die well – die fully conscious, die with intent, control the whole process – and also, if there is any problem, if they suddenly decide this is not what they want to do, they can always revert to eating
Other methods described are walking to a desert and walking until you drop, and throwing yourself into a fire, or into the sea. These are methods prescribed by the sacred texts. Drugs: not prescribed – even though they had them in the ancient days – because it is not an aware death, it’s not done with control and awareness.
David Rutledge: Is there a skill involved in preparing for your own good death?
Rami Sivan: We have, within the Hindu tantric tradition, many meditative techniques that we use on a daily basis, which are the rehearsal of the death – like mantra recitation: that we do constantly, twenty-four hours a day if possible, or throughout the waking state, we try and focus on the mantra rather than the internal monologue that’s going on. So every time you become aware of the internal monologue, you shift to mantra. Because the mantra is that which guides the mind, focuses the mind. And so if death comes at any moment – when you’re driving along the freeway, and you’re reciting your mantra, and a big truck hits you – then you’re in the right state of mind to use that point of impact.
So for us, awareness of death must be there all the time. Again, it sounds a bit pessimistic – but it’s not. It brings great joy into your life, because you know reality, you know what the truth is, that it could come at any moment. And you are prepared to face death courageously; it’s a good day for dying.
Margaret Mines: I have a firm belief in God, and God’s loving kindness, and loving mercy, and my secure place in God’s plan. For a lot of other people, they don’t have that conviction, they don’t have a religious background, and so quite often I’ll say to people “how would you like it to be, what do you think’s going to happen? What about the people who have already died, would you like to meet up with some of them?” And they’ll talk about their grandmother, or their school friend who died young, and who they would dearly like to catch up with. But grandmothers are the favourite people; it’s just extraordinary, the number of people who talk about meeting up with their grandmother.
David Rutledge: I certainly hope to meet up with mine – both of them.
Margaret Mines: Yes, and I think it’s because sometimes we war with our parents, because we’re too close to them – but grandmothers are a step aside, and they can be more tolerant of us. And as people are dying, I often have this wonderful feeling of the people who are around the bed passing this person over to the people who’ve already died. And I think that’s part of it, that we’re able to come to terms with the fact that OK, we’re not perfect – but it doesn’t really matter anyway, because we are who we are. And for someone with my faith, who believes in God who loves me, and isn’t always expecting me to be perfect, frowning down at me for not being perfect – who cares?
Reader: For three whole days, during which time did not exist for him, he struggled in that black sack into which he was being thrust by an invisible, resistless force. He struggled as a man condemned to death struggles in the hands of the executioner, knowing that he cannot save himself. And every moment, he felt that despite all his efforts, he was drawing nearer and nearer to what terrified him. He felt that the agony was due to his being thrust into that black hole – but still more, to his not being able to get right into it.
Suddenly, some force struck him in the chest and side, making it still harder to breathe, and he fell through the hole – and there, at the bottom, was a light. What had happened to him was like the sensation one sometimes experiences in a railway carriage, when one thinks one is going backwards, while one is really going forwards, and suddenly becomes aware of the real direction.
"How good – and how simple!" he thought. "And the pain?" he asked himself. "What has become of it? Where are you, pain?"
He turned his attention to it.
"Yes, here it is. Well, what of it? Let the pain be."
"And death...where is it?"
He sought his former accustomed fear of death, and did not find it. "Where is it? What death?" There was no fear, because there was no death.
To him, all this happened in a single instant. For those present, his agony continued for another two hours. Something rattled in his throat, his emaciated body twitched, then the gasping and rattle became less and less frequent.
"It is finished", said someone near him.
He heard these words and repeated them in his soul.
"Death is finished," he said to himself. "It is no more"
He drew in a breath, stopped in the midst of a sigh, stretched out,
David Rutledge: You’ve been listening to Encounter on ABC Radio National. Guests this week were Rami Sivan, Margaret Mines, Liz Turnbull, Peter Saul and Michael Barbato. Readings from Tolstoy’s The Death of Ivan Ilyich were by Alice Bambridge, and studio production this week from Angus Kingston.
Thanks to all of them – thanks also to Taya Fabianic, Hugh Bohane, and John Bott.
Guests on this program:
Hindu cleric and registered nurse, Royal Prince Alfred Hospital, Sydney
Psychotherapist and Buddhist practitioner
Senior intensive care specialist, John Hunter Hospital, Newcastle NSW
Sr Margaret Mines
Pastoral carer and Director of Tree of Hope, Sydney
Palliative care physician, Braeside Hospital, Prairiewood NSW
Caring For the Dying
Author: Michael Barbato
Publisher: McGraw-Hill Book Company (Sydney 2002)
Author: Grahame Jones
Publisher: Boombana Publications (Qld 1999)
Conscious Living Conscious Dying
Michael Barbato online
Hindu approaches to caring for the dying
Being with dying
1995 article by Joan Halifax, U.S.-based counsellor and teacher of health care professionals
Palliative Care Association of NSW
South Australian Voluntary Euthanasia Society
Euthanasia and Assisted Suicide in Australia
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