September 2008
A GOOD DEATH – A CHALLENGE TO LAW AND MEDICAL ETHICS
What is a good death? Well, it is the antithesis of a bad death. In my view, a good death is not what Philip Aries described as a ‘wild death’, an unprepared death without peace, especially in the midst of futile attempts to prolong life. Nor, as Dylan Thomas so famously wrote – “Do not go gentle into that good night, Rage, rage against the dying of the light”.
Some might see the phrase a ‘good death’ as an oxymoron; philosopher Margaret Pabst Battin coined the term ‘least worst death’ which may, in reality, be nearer the mark.
It is clearly ¬highly subjective – what you regard as a ‘good death’ is a good death for you. It may not be for me. For example, some Catholics see salvific value in suffering at the end of life. But research shows that for most people the issues are clear.
A good death involves acceptance of the reality of approaching death, which allows clear communication with family and friends of their value to you and their place in your life. A good death requires a calm state of mind, devoid of toxic anxiety. It requires a minimum of suffering, certainly not intolerable suffering in the broadest sense of that word. A good death means being able to say goodbye, and not dying alone. And for many it requires control of the dying process, with the ability to choose when, where and how one dies. It requires dying with peace, dignity and security.
How, then, does our current situation stack up against that model?
Let me state six‘givens’, or unarguable basic medical positions.
The first given – that dying may be associated with intolerable suffering, and there may be a crescendo of suffering as death approaches.
The second given – that palliative care cannot relieve all the pain and suffering of dying patients. This is agreed by Palliative Care Australia.
The third given – some suffering will only be relieved by death.
The fourth given – some patients rationally and persistently request assistance to die.
This has also been acknowledged by Palliative Care Australia. This is well expressed by Gert and colleagues, who said “When patients have terminal diseases, it is generally the case that when they want to die, it is rational for them to choose death.” Such requests have been measured within a palliative care unit. Hunt and Maddocks recorded the views of 331 of their patients who died in palliative care over a two year period – “ Eleven per cent said “I wish it would hurry up”; 6% said “could you hurry it up”; and [another] 6% said “please do something now”.
The fifth given – the doctors duty to relieve suffering.
This is a long-standing responsibility. In the 18th century, in his lectures on the duties of a physician, Dr John Gregory stated “It is as much the business of a physician to alleviate pain, and to smooth the avenues to death when unavoidable, as to cure diseases”. This is mirrored in modern times by New York palliative care specialist Diane Meier –
“A peaceful death must be acknowledged as a legitimate goal of medicine, and as an integral part of a physician’s responsibilities.” If only it were as simple as just saying so. While this principle has not altered from Gregory to Meier, the manner of its implementation has done so, yet is still the subject of bitter debate.
The sixth given – the doctor’s duty to respect patient autonomy.
When I entered medical practice in 1960, it was into a world where the doctor thought he knew best, most patients did what they were told, and discussion was not encouraged. What a revolution has occurred in the last 50 years. Douglas Martin and colleagues wrote in 2000 “The principle of autonomy is the dominant ethic of health care in North America and Western Europe” , and, of course, Australia. Even so, not all doctors honour this principle.
So there are the six givens. Doctors do have a duty to relieve suffering and to respect autonomy, and patients do make rational and persistent requests for assistance to die. Accepting these givens, it should be clear that doctors face difficult challenges in achieving a good death for their patients.
Is it unreasonable for someone with intolerable suffering, who knows she is going to die, to wish for a good death? To say goodbye and go to sleep, and die quickly, peacefully and with dignity? And we should also acknowledge that the notion of intolerable suffering, and of dignity in dying are, like a good death, subjective matters, properly determined by the suffering individual.
Let us analyse further that request for assistance to die – is it actually for assistance to die or for relief of suffering? I am quite convinced that such requests are fundamentally a desire to be relieved of suffering. The patient accepts that death is preferable to that continuing distress. If the suffering can be relieved, the request for assistance dissipates. These people do not want to die – they want to live, but without unbearable suffering.
At this point it is pertinent to reflect on the nature of suffering.
Monash University Palliative Care Professor Michael Ashby wrote – “For many people who are dying it is not just a question of comfort or absence of physical suffering, but a loss of function, independence and role which are hardest to bear.”
The renowned American physician and medical ethicist Eric Cassel stated “Suffering is an affliction of the person, not the body”. Suffering is not simply pain or other physical symptoms. Dependency is an example of existential and psychological suffering.
Dependency derives from physical deterioration, but creates an existential suffering that is additional to the physical state. The decline, actual or potential, in physical health creates a suite of existential distress which leads to profound psychological suffering. A loss of role and meaning in life, a sense of being a burden to others,
powerlessness and loss of control over one’s own life, fear of loss of personality and cognition, loss of dignity, hopelessness, and a loss of any enjoyment in life are profound existential sufferings.
These losses lead to extreme anxiety, fear or even terror. They may indeed lead to clinical depression, but it is not depression per se, but an integral and compounding part of the distress. That depression is exceedingly hard to alter, unless the physical symptoms can be alleviated. Most dying patients have a combination of physical, psychological and existential pain, referred to in palliative care as a ‘total pain syndrome’.
What options does a doctor have when facing this situation? I suggest there are six options.
The first option. The doctor can reject the request for assistance to die out of hand, shutting the door firmly in his patient’s face. Denial by the doctor forces the patient to continue suffering. Of this option, Palliative care Professor Robert Twycross, even though he is opposed to euthanasia, said – “A doctor who leaves a patient to suffer intolerably is morally more reprehensible than the doctor who performs euthanasia.” Such denial may simply drive that person to seek a violent and undignified end. Denial may even force the person to cease eating and drinking in order to die. This option is clearly unethical.
The second option The doctor may respectfully deflect the request, exploring its origins, and attempting to alter them – this is the typical palliative care approach, but it may not succeed. What then?
The third option The doctor may discuss refusal of treatment, which may hasten death, with a promise of intensive palliation. But there may be no treatment to refuse, and no palliative treatment proportionate to the situation.
The fourth option The doctor can provide increasing doses of morphine, which become lethal by addition. Morphine has been used for easing and hastening death for centuries. It is extremely valuable for relieving pain, but even in massive doses it will not relieve all pain.
In my book, I describe Betty’s suffering from neuropathic pain due to spinal cancer. Morphine will not relieve such pain – only an anaesthetic will do so. Morphine also depresses respiration, so that whilst it may ease pain, it may also hasten death. It is the only effective treatment for extreme breathlessness, but paradoxically relieves the symptom whilst hastening death. But a doctor cannot provide morphine for the relief of other non-painful suffering. Medicine’s panacea, morphine, is fair enough for intense pain, but it is totally inadequate, and harmful for relieving existential and psychological suffering.
The fifth option The doctor can provide ‘so-called’ deep continuous sedation. This is a complex concept that may be new to many, and needs some elaboration. Deep sedation involves the use of sedative drugs to render the patient deeply asleep, often in conjunction with morphine. The patient becomes oblivious of their suffering until death, which may take some days. That is why it is often described as ‘terminal sedation’, and is often harrowing to all who are close.
Terminal sedation is a well-kept secret, “rarely discussed in an open fashion”. Although in active use in palliative care for over 20 years, I only discovered its use by a strange accident 10 years ago, which I relate in my book. First described in 1988 for terminal restlessness, terminal sedation rapidly became widely used for an increasing range of indications. Ventafridda described in 1990 how he needed to use it in 50% of his patients receiving home palliative care. States of palliative futility, such as unrelievable pain, delirium, breathlessness, fatigue, nausea and vomiting, and psychological and existential suffering are all common pretexts for terminal sedation in palliative care.
Oblivion certainly relieves suffering when morphine alone will fail, or is not appropriate. A patient in a coma cannot ingest any food or fluids and will dehydrate, and may develop lethal pulmonary complications. However the provision of intensive care to such a dying patient is futile as it simply prolongs the dying process. It is not normally done. That person may die of the sedation before they die of their illness. Terminal sedation is a deliberate process which, whilst relieving suffering, can undoubtedly hasten death.
Doctors who are morally challenged by this either refrain from terminal sedation, use it in a miserly fashion, or provide sedation with formal anaesthetic protection and hydration, thereby causing their patients to remain in this induced coma for many days before dying. Janet Hardy, in a Lancet editorial, wrote – “The concept of sedation causes considerable unease in many palliative care workers, most of whom are ardently opposed to any form of euthanasia or physician-assisted suicide. There is concern that sedation as the best means of symptom control in the dying patient may be underused because of fear of employing ‘terminal sedation’.”
It is justified by some through ‘double effect’, a Catholic moral doctrine developed by St. Thomas Aquinas in the thirteenth century to justify some actions which seemed contrary to established dogma. Broadly speaking, this doctrine postulates that where an action may have both good (relief of suffering) and bad (hastening of death) effects, the action is justified if the bad effect is not intended. To protect the doctor’s morals, the creation of oblivion must be slow. Patients may argue that hastening death is not always bad, but they do not have a say in the double effect debate.
Ashby says such sedation is regarded as acceptable palliative care and such deaths are not reported to the Coroner. The decision to use terminal sedation, and the acceleration and depth of sedation, vary depending on the moral view of the doctor, and is very much controlled by the doctor rather than the patient.
British palliative care doctor, Derek Doyle, has written – “It is often said that a metaphorical halo shines over specialist palliative care and its practitioners with the result that some of its claims and assumptions have gone unchallenged by all but a few.”
Professor Erich Loewy is one of those few. I quote him at length because his comments are penetrating. “When patients ask for and seem to require sedation sufficient to render them unconscious at the end of their life, there can, in selected cases, be little ethical objection. Patients injected with overdoses of a drug with the intention of causing their deaths or patients kept unconscious with the intention of keeping them unconscious until death ensues are in the end both very much dead. To say that in the former case death was the intended consequence but in the latter to deny that death was the intended consequence seems, at the very least, disingenuous….. The difference is maintained for two reasons. The first is to escape legal difficulties; the second is a form of self-delusion aimed at giving comfort to the physician and the medical team. There is basically nothing wrong with accommodating the law when doing so does not conflict with ethical values or trying to minimize the anguish of the medical team. But self-delusion, because of its tendency to produce a form of unrecognized dishonesty, is not something to be encouraged”. He continued “I want to be clear. Although such a practice may shorten life, I do not in any way oppose maximal sedation and analgesia for patients at this stage of life. Indeed I can see no rational or humane argument against such a practice”. Loewy concludes by saying “But I do oppose the idea that we should engage in this practice for our own sake or the court’s sake. Ethics, if it must be anything, must be honest.”
Terminal sedation thus provides palliation by first eliminating consciousness, and ultimately eliminating life. However, one could ask “Why should a patient who requests a quick death be subjected to a prolonged dying?” The answer is that it is to protect the moral and legal interests of the doctor. Good ethical practice? Not in my view. Except for the dimension of time, terminal sedation is no different from physician assisted dying, which I am about to advocate.
The sixth option. The doctor may explore, and finally accede, to the rational patient’s request and provide physician assisted dying. Here I am referring to an action, taken by, or at the request of, a rational fully informed person, whose intention is to be relieved of intolerable suffering – an action that hastens death in a dignified manner. That action may involve the delivery of a lethal injection, or the prescription of lethal medication, which the patient ingests to end his own life.
There is only a rare need for the former, and personally I strongly favor the latter. Crucially, the provision of a lethal prescription for oral use leaves responsibility for the decision, and the action that causes death, where it belongs, with the suffering person. Control remains completely in the hands of the sufferer, to choose to end their life, and when, or not, as the case may be. It has far greater safety against the possibility of non-voluntary, even though well-intentioned, death.
The provision of lethal oral medication clearly fulfils a rational and persistent request for assistance to die, to die a good death, yet such practice is regarded as unethical by the AMA. More significantly, physician assisted dying has long been regarded as a serious crime, of aiding and abetting suicide, or of murder.
Thus, faced with a patient with intolerable suffering who is making a rational and persistent request for assistance, a doctor is on the edge of a moral and ethical abyss, but without any safety ropes. It also takes the doctor to the edge of, or even into, the ‘black hole’ of legal ambiguity.
Fear of prosecution has inhibited physician assisted dying, but research reveals that fear of prosecution does not prevent it. Fear of prosecution has also had a limiting effect on the aggressive use of morphine and sedatives. Doctors have, in fact, rarely been prosecuted for such offences; but because of their fear, it is their patients’ suffering which is multiplied.
So here is the ‘black hole’- the difficult choice between various ethical options, with varying degrees of legal and moral acceptance.
Deep continuous sedation and physician assisted dying, one apparently legal and the other not, both of which are applied to people with intolerable and unrelievable suffering who have requested assistance to die.
Both deep sedation and a lethal injection can cause death; a lethal injection clearly does so, whereas sedation does not always do so, or does not always clearly do so. A lethal injection causes death quickly, whereas sedation does so slowly, creating a convenient mirage over the event.
Evidence shows that both sedation and a lethal injection can be delivered without the explicit consent of the patient.
A self administered oral drug, however, requires the complete control of the patient. A self administered drug will also cause death, but research in Oregon shows that 30% of legal lethal prescriptions are not used, but the prescription has provided valuable psychological palliation.
We have in Australia, no accurate information as to how often terminal sedation occurs. It is completely unregulated and there are no official guidelines. And this for a process which causes death! And of course, physician assisted dying, whilst it is acknowledged that it occurs, is also unreported and unmeasured.
In many ways, the distinction between these actions is that of time – in fact, deep sedation has been dubbed ‘slow euthanasia’, described as “the clinical practice of treating a terminally ill patient in a fashion that will assuredly lead to a comfortable death, but not too quickly” . One cannot help asking “How fast is murder, and how slow is good practice – where is the line? How can one draw a line?”
It is the absence of specific law for the medical profession that is responsible for the ‘black hole’. Let me explain.
Medicine is a particular activity which brings its practitioners in close proximity to death and the causation of death. Yet despite being in this unique and vulnerable position, there is no specific law to protect medical practitioners. A doctor who hastens the death of his intolerably suffering patient by an hour, or even a minute, is subject to the same law that applies to a ‘gun for hire’ such as ‘Benji’ Veniamin.
The Chief Justice of WA, Hon. Justice David Malcolm wrote –
“At present members of the medical profession are placed in a very difficult situation where they have patients who are terminally ill and suffering great pain and mental anguish or otherwise suffering, who know that matters need to be brought to a dignified end. The dilemma facing doctors is the twin obligations to preserve life and to relieve suffering. …. The question is should we leave doctors in this exposed position without statutory protection?”
Victorian Senior Counsel Richard McGarvie put it more bluntly –
“As the law stands, only the good sense of prosecuting authorities and juries stands between compassionate and courageous medical practitioners and convictions for murder.”
To illustrate McGarvie’s point, to my knowledge only two doctors in Australia have been charged with either murder or manslaughter, or aiding and abetting suicide, in the last 45 years. Both were acquitted. It is therefore often argued that the lack of prosecutions of doctors should give the profession confidence that they are not at risk. So long as doctors assist patients with drugs of therapeutic value, such as analgesics and sedatives, they do remain relatively safe.
Doctors can foreseeably hasten death, whereas in all other circumstances it would be considered manslaughter. The reason is the 1957 English decision of Justice Devlin.
Devlin, in the Crown v Adams, said that a doctor could use narcotic analgesics to relieve his patient’s pain and suffering, even though the foreseen but unintended consequence was to cause or hasten death.
This is regarded by academic lawyers as a legal application of ‘double effect’. Professor Loane Skene and others however argue that there is no clear conceptual basis for the use of ‘double effect’ doctrine in law. It is an English legal precedent that is generally thought to apply in Australia, although it has never been tested here. Nevertheless, it seems that it allows for the use of narcotics and sedatives that may cause death, and it has saved many doctors from serious charges. It is thought by some that Devlin’s precedent applies to the suffering of psychological and existential pain, but it is by no means clear. Despite this precedent having been accepted for over 50 years, there is no clarity as to how or when it applies, and it may be applied without any patient consent.
I am not suggesting that Devlin’s precedent has not been helpful. Such precedents are very cosy in medical situations where the extraordinary range of contexts makes statutory law difficult, but they are lazy law.
They apply to a particular situation, and their exact scope can be uncertain. They do not have the careful criteria of statute law, and may require some bunny to be the victim of a test case to define their limits.
In the case of Devlin’s precedent, its scope has enlarged more as a result of unchallenged practice than through test cases.
It is somewhat ironic that Devlin’s precedent should have had such a far-reaching influence, since Dr Adams used morphine for his elderly patient after a stroke, not a notoriously painful condition, and not one for which morphine would be commonly provided. Moreover, Adams stood to gain under her will.
It seems to me that the reason for the reliance on this precedent is that the whole fabric of good palliative care would be destroyed if a doctor were charged for alleged excessive use of sedatives and narcotics.
Should a doctor have to risk his practice and his freedom on such an uncertain basis? It is more likely that his or her patient will suffer rather than that the doctor will take such a risk.
The Dutch legal system reached a different conclusion to Devlin in similar circumstance. It applied the argument of necessity, or ‘force majeure’, to justify the use of drugs that end life to relieve suffering.
English and Australian law seems to be uncomfortable with the idea of necessity, yet to a doctor, the concept of necessity as the basis of the Devlin precedent has more validity than double effect.
The Menhennitt precedent in Victoria on abortion, another emotional, morally charged issue involving death, was clearly based on the principle of necessity. Why should the legal concept of necessity not also apply at the other end of life, when there is a medical necessity to relieve suffering that will only end with death? Professor Roger Magnusson argues powerfully for the preference of necessity over double effect.
It is notable that, in the absence of law appropriate to the circumstances of end of life medical practice, the medical profession has ‘made the law’. I refer in the first instance to the practice of withholding and withdrawing treatment. With the advent of new technologies to save and prolong life, such as artificial ventilation, doctors were faced with the problem of withdrawing treatment that had become futile, but that same withdrawal would directly cause the death of the patient.
Doctors feared that they could be charged with murder, but they went ahead anyway, because they deemed it the proper thing to do.
Prosecutors demurred from charges, and the practice of the law was changed, even if arguments about causation had to be invented which, according to Law Lord Mustill “seems to….require not manipulation of the law so much as its application in an entirely new and illogical way.”
The introduction of deep continuous sedation, with the clear potential to cause death, did not have the sanction of statutory law. It relied on an extension of the Devlin principle of legal double effect as applying to the deeply sedating effect of drugs other than morphine.
Doctors welcomed this development for, as Australian palliative care Dr Alexandra Burke said “It provided a readily available means of controlling symptoms and overcoming patient distress where no feasible alternative existed before.” Potentially death hastening treatment was introduced and no one was charged.
Compassionate doctors had again remade the law.
It seems quite clear that death-hastening medical treatment that is palliative in nature will not be questioned, unless someone complains.
Like Professor Loewy, I do not disagree with such death hastening treatment. Nevertheless such treatment goes on without any guidelines, without the necessity for any second opinions, medical or psychiatric, sometimes without consent, without the necessity to report such action to the coroner, and without any official oversight. There is no knowledge as to how frequently deep continuous sedation is used in Australia. And yet many in palliative care criticize the Dutch who have subjected their end of life medical practices to relentless scrutiny!
It is clear to me that the law ties itself in knots over medically hastened deaths because it applies the same law and legal principles to such medical deaths as it does to vicious murders. It then tries to justify the obvious problems this causes by dodgy precedents, dodgy arguments about causation, and by turning a blind eye to much that goes on. To paraphrase Shakespeare, the law is “honored more in the breach than the observance”. It assumes that medical practice is above board – it probably is, but how would any one know? Don’t forget Dr Harold Shipman.
There are two longstanding legal principles which, to me, are integral to the problem. The first is that consent is not a defence to murder or assisting suicide. Consent, as a reflection of autonomy, is a fundamental principle in medicine, and it changes many medical acts from criminal to acceptable. It is the most powerful way to determine that suffering is intolerable and that life threatening palliation is appropriate. It converts medical acts that might be dubious to acts that are transparent and correct. I suggest that consent is of the greatest importance in establishing a new paradigm for medical acts that hasten death.
Medical acts that hasten death are unique. They are the only acts in the drama of human affected death where the view of the central player, the dying person, can be reliably established. The law, unlike medicine, completely ignores the choice, and therefore consent, of the patient. Why is this not taken into account in law? It is a gold standard that should always be demonstrated when making an ethical medical, and I would say, legal judgment. After all, consent makes sexual intercourse a legal act of love – without consent it is a crime.
Physician assisted dying, in my opinion, may also occasionally be an act of love, but is always an act of respect.
The second issue is intention, which is the corner-stone of criminal prosecution in capital matters. Where a known criminal shoots at close range and kills for payment some one he has never met, it can be reasonably argued that it was his intention to kill. Intention is not always so clear. Medical intentions are complex.
Dr. Timothy Quill wrote “Multi-layered intentions are present in most, if not all, end of life decisions”.
Jessica Corner, Director of the Centre for Palliative Care Studies at the Royal Marsden Hospital confirms this complexity – “The easing of death, as an intentional double effect, is common place in palliative care and general practice.” That is to say, both intentions, palliation and easing, or one might say hastening, of death are present. She went on to say “ Palliative care needs to take the lead by making clear the strategies it employs for managing difficult situations at the end of life, and, when double effect is used with a view that death is a likely and welcome secondary consequence, to be open about this.”
Note that death is a welcome secondary consequence.
I completely concur with this position, and believe that in every instance where a doctor hastens death, he or she does so with the primary intention of relieving suffering, but acknowledging that death may be an unavoidable consequence. This is so whether the intervention is by deep continuous sedation, lethal injection or the provision of medication for the patient’s ingestion. To attempt to distinguish some palliative acts as having the primary intention to kill, while maintaining that others do not have that intention, or only a secondary intention, is foolish.
The Council of Judicial and Ethical Affairs of the American Medical Association wrote – “The ethical distinction between providing palliative care that may have fatal side effects and providing euthanasia is subtle because in both cases the action that caused death is performed with the purpose of relieving suffering.”
A final comment on intention from Professor Loewy – “At least in law, and I would reasonably hold the same true for ethics, one is responsible not only for what one has clearly intended, but also for what one could reasonably foresee. In terminal sedation, not only is the patient’s death clearly foreseen, it is in fact the end point of what is being done. Clearly (and however it may be cloaked by the use of language), the intent here is more than just the clear goal of relieving pain and suffering. Because the goal of relieving pain and suffering adequately can be attained only by obtunding the patient until death ensues, the patient’s death becomes the end point and, therefore, one of the intended goals. These goals do not differ from those of physician assisted suicide, or, for that matter, voluntary euthanasia. …. Terminal sedation, we would claim, differs from some form of voluntary active euthanasia mainly in that it has not been, and is unlikely to be, challenged.”
While Loewy points out that an intention of deep sedation is to hasten death, he argues that it is not the primary intention, which is to relieve suffering. The occurrence of death is very much a secondary intention, an unavoidable intention.
His analysis confirms in spades my third medical given, that some suffering will only be relieved by death.
While these medical views reveal the inadequacy of intention as a yardstick, Roger Magnusson confirms this from the legal perspective, agreeing that doctors’ intentions may be “ambiguous and inscrutable”.
In 1992, Dr Nigel Cox, a respected British rheumatologist, could not relieve, with morphine, the appalling pain of his patient with end-stage rheumatoid arthritis. She, and her family, pleaded for his help to end her suffering.
Like me in 1992, Cox had not heard of terminal sedation.
Cox injected her with potassium chloride, and recorded the fact – this was a drug with no effect other than to stop the heart. He was convicted of attempted murder, rather than murder simply because the body had been cremated before a complaint was made. Had he injected her with the potentially lethal sedative pentobarbital, he would almost certainly not have been charged. To hasten her death with a barbiturate would be palliation, but with potassium it was murder.
Dr Cox, a decent honorable professional, was acting in the best interests of his patient. Was he acting humanely and with compassion? Was he acting maliciously or for personal benefit? He was sacrificed upon the legal altar, to maintain the façade and humbug of inadequate law. To prove my point, he was given a suspended sentence – for attempted murder! One has to ask whether the drug used to hasten death, or the time taken to die, either quickly or slowly, is sufficient reasons to distinguish between a criminal act and good medical practice. If patients are to receive humane treatment at the end of life, the law needs to protect doctors such as Nigel Cox from unnecessary and punitive prosecutions.
It is a fact that a doctor can prescribe, and deliver, injectable drugs, clearly foreseeing that they will hasten or cause death, providing they are the ‘right’ drugs, those with approved therapeutic effect. In the same circumstance, a doctor could also prescribe drugs for oral consumption.
In my book I relate how I prescribed oral morphine and sedatives to my patient with prostate cancer, the same drugs as used in terminal sedation. I could foresee that he might use them to end his life, which he did. I reported this to the police, and was not charged – in fact, I could not be charged, because I was providing necessary drugs for pain and insomnia, even though it could be argued that I had aided his suicide.
I describe how I prescribed oral barbiturates to Susan, a young woman with an inoperable brain tumour, explaining how the drugs might be used to end her life.
However, in the end, Susan died by terminal sedation, ‘naturally’ as it were, two and a half years later. She did not use my medication, but it provided enormous palliation by giving her the sense of control over the end of her life. She had what the Melbourne Age journalist Pamela Bone described as “the knowledge”. No amount of gratuitous reassurance could have given her that security.
A more important point is this – although given advice and the means, she did not take her own life, demonstrating that it the intention of the sufferer that is pertinent, not that of the doctor.
In 2005, I assisted Steve Guest to die. He had terminal oesophageal cancer, and despite tube feeding, was wasting away in pain. Steve died of a lethal oral dose of pentobarbital. stated to the press and the police that I had given him control over the end of his life, and additionally on radio and television that I had given him advice about barbiturates, and that I had given him medication.
The coroner, after detailed discussions with the police and DPP, has closed the case without an open inquest, despite it being requested by Steve’s brothers and myself. Is this the oral equivalent of double effect by injection? One has to ask, is aiding and abetting ‘suicide’ a crime in the medical context? Is medical practice again creating a new interpretation of the law?
Maybe, but good law depends on the defined and refined use of language.
There is no good law where the language does not exist.
Steve’s death provided the final impetus to my view that there is a ‘benign’ conspiracy between the police, coroners, prosecutorial authorities and government to avoid prosecution of doctors who help their patients to die, with their consent and for the relief of their suffering, even if there is strong circumstantial evidence that the law has been broken.
In my opinion, this conspiracy occurs because the authorities see that doctors are between a rock and a hard place, and they are themselves between a rock and a hard place.
Yet these same authorities prosecute so-called lay ‘mercy killers’, piously invoking the need for deterrence and the rule of law, yet ignore these principles when the medical profession is concerned.
Analysis of lay ‘mercy killing is instructive. Margaret Otlowski has stated “It is evident …that a glaring gap exists between law in theory and the administration of the law in practice” and “the enormous discrepancy between the law in theory and the law in practice threatens to undermine public confidence in the law and bring it into disrepute Because the present criminal law principles which treat motive as irrelevant are widely perceived as being inappropriate in mercy killing cases, artificial means are frequently used to circumvent the full rigour of the criminal law; for example, the sanctioning of charges fro a lesser offence notwithstanding clear evidence to the contrary, the acceptance of arguments based upon lack of causation, and ‘sentimental acquittals’ from juries.” And it seems to me that our judges make their feelings known by the almost universal application of non-custodial sentences.
Otlowski makes the point that the majority of these ‘crimes’ would not occur if legislation for physician assisted dying existed.
Which leads one to ask ‘what IS the law relating to hastening death in a medical context’? There is a chink of enlightenment in the preamble to the Victorian Medical Treatment Act of 1988 which says “the Parliament recognises that it is desirable to ensure that dying patients receive maximum relief from pain and suffering”. Does this justify my providing Steve Guest with advice and medication? I am not sure – it remains uncertain without a clear judicial precedent, or statutory law. One can come to no other conclusion than that there is no law that any doctor can rely on.
This situation means that people with similar medical contexts will receive widely differing outcomes. It is entirely arbitrary whether they get the treatment they want. It depends on their doctor’s training, experience, beliefs and courage. It depends on the nature of their disease, whether it is terminal and painful or chronic and non-painful. It depends on where they are being cared for – in a public environment such as a hospital, or the privacy of their own home. And it depends on the sufferer’s education, influence and awareness of the medical system.
As philosopher Professor Ronald Dworkin stated, in ‘The philosophers’ brief’ to the US Supreme Court, “the current two-tier system – a chosen death and an end to pain outside the law for those with connections, and stony refusals for most other people – is one of the greatest scandals of contemporary medical practice”. It does not depend on the law. These are not the hallmarks of a just legal system.
Yet many doctors, including those in palliative care and the AMA support this status quo, which can only be described as covert, cosy, malleable, and hypocritical.
Medical practice at the end of life is a unique area of human endeavour that requires particular regulation, but none exists. I have argued that the law has failed to develop in response to changes in modern medicine, in end of life complexities, and also to changing community attitudes.
The law seems to allow, without any scrutiny or guidelines, death hastening acts, some of which are considered to be legal and some not.
The law seems to allow certain palliative acts that are not those that most people would prefer, and denies others, that they would choose, given the option. It has relied on vague precedents that accept that if medical acts are intended to be palliative, then they will not be prosecuted. Because of this ‘black hole’ in the law, medical practice at the end of life is entirely arbitrary, depending to a great extent on the courage and moral view of your doctor. Surely the rock can be moved and the hard place softened. It can be done, based on the principles of autonomy, as reflected by consent, and the necessity to relieve suffering, as reflected by palliative acts.
At the end of the day, it is not doctors who suffer because of the ‘black hole’ but their patients.
One day that might be your mother, or your father, or you.
References used by Dr Syme
D.Roy, Journal of Palliative Care 1990;6:3;
B.Gert et al, “”An alternative to physician assisted suicide” in “Physician assisted suicide – expanding the debate” Ed. M.P.Battin, Routledge (1998)
R.Hunt et al, Palliative Medicine 9 (1995): 167
D.Meier, Annals of Internal Medicine 1997;127;225
D.Martin et al, Lancet 2000;356:1672
M.Ashby, Medical Journal of Australia 1995;162:596
E.Cassel, Annals of Internal Medicine 1999;131:531
R.Twycross, Journal of the Royal Society of Medicine 1996;89:61
Rodney Syme, A Good Death- An Argument for Voluntary Euthanasia, 2008 MUP
V.Ventafridda et al, Palliative Care 1990;6:7
J.Hardy, Lancet 2000;356:1867
D.Doyle, Journal of Pain and Symptom Management 1992;7:302
E.Loewy, Archives of Internal Medicine 2001;161:329
A.Billings, S.Block, Journal of Palliative Care 1996;12:21
A.Billings, S.Block, ibid
D.Malcolm, ANZ Medical Journal,1998;28:46
R.McGarvie, The Age
L.Skene, Law and Medical Practice: duties, claims, and defences, Butterworths (2003)
R.Magnusson, Journal of Law, Medicine and Ethics Fall (2006), 559-569
A.Burke et al, Medical Journal of Australia 1991;155:485
T.Quill, Journal of the American Medical Association 1993;329:1039
J.Corner, British Medical Journal 1997;315:1242
AMA Council of Judicial and Ethical Affairs, Journal of the American Medical Association 1992;267:2229
E.Loewy, ibid
R.Magnusson, ibid
M.Otlowski, Criminal Law Journal, 1993;17:10
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A GOOD DEATH – A CHALLENGE TO LAW AND MEDICAL ETHICS
What is a good death? Well, it is the antithesis of a bad death. In my view, a good death is not what Philip Aries described as a ‘wild death’, an unprepared death without peace, especially in the midst of futile attempts to prolong life. Nor, as Dylan Thomas so famously wrote – “Do not go gentle into that good night, Rage, rage against the dying of the light”.
Some might see the phrase a ‘good death’ as an oxymoron; philosopher Margaret Pabst Battin coined the term ‘least worst death’ which may, in reality, be nearer the mark.
It is clearly ¬highly subjective – what you regard as a ‘good death’ is a good death for you. It may not be for me. For example, some Catholics see salvific value in suffering at the end of life. But research shows that for most people the issues are clear.
A good death involves acceptance of the reality of approaching death, which allows clear communication with family and friends of their value to you and their place in your life. A good death requires a calm state of mind, devoid of toxic anxiety. It requires a minimum of suffering, certainly not intolerable suffering in the broadest sense of that word. A good death means being able to say goodbye, and not dying alone. And for many it requires control of the dying process, with the ability to choose when, where and how one dies. It requires dying with peace, dignity and security.
How, then, does our current situation stack up against that model?
Let me state six‘givens’, or unarguable basic medical positions.
The first given – that dying may be associated with intolerable suffering, and there may be a crescendo of suffering as death approaches.
The second given – that palliative care cannot relieve all the pain and suffering of dying patients. This is agreed by Palliative Care Australia.
The third given – some suffering will only be relieved by death.
The fourth given – some patients rationally and persistently request assistance to die. This has also been acknowledged by Palliative Care Australia. This is well expressed by Gert and colleagues, who said “When patients have terminal diseases, it is generally the case that when they want to die, it is rational for them to choose death.” Such requests have been measured within a palliative care unit. Hunt and Maddocks recorded the views of 331 of their patients who died in palliative care over a two year period – “ Eleven per cent said “I wish it would hurry up”; 6% said “could you hurry it up”; and [another] 6% said “please do something now”.
The fifth given – the doctors duty to relieve suffering. This is a long-standing responsibility. In the 18th century, in his lectures on the duties of a physician, Dr John Gregory stated “It is as much the business of a physician to alleviate pain, and to smooth the avenues to death when unavoidable, as to cure diseases”. This is mirrored in modern times by New York palliative care specialist Diane Meier –
“A peaceful death must be acknowledged as a legitimate goal of medicine, and as an integral part of a physician’s responsibilities.” If only it were as simple as just saying so. While this principle has not altered from Gregory to Meier, the manner of its implementation has done so, yet is still the subject of bitter debate.
The sixth given – the doctor’s duty to respect patient autonomy. When I entered medical practice in 1960, it was into a world where the doctor thought he knew best, most patients did what they were told, and discussion was not encouraged. What a revolution has occurred in the last 50 years. Douglas Martin and colleagues wrote in 2000 “The principle of autonomy is the dominant ethic of health care in North America and Western Europe” , and, of course, Australia. Even so, not all doctors honour this principle.
So there are the six givens. Doctors do have a duty to relieve suffering and to respect autonomy, and patients do make rational and persistent requests for assistance to die. Accepting these givens, it should be clear that doctors face difficult challenges in achieving a good death for their patients.
Is it unreasonable for someone with intolerable suffering, who knows she is going to die, to wish for a good death? To say goodbye and go to sleep, and die quickly, peacefully and with dignity? And we should also acknowledge that the notion of intolerable suffering, and of dignity in dying are, like a good death, subjective matters, properly determined by the suffering individual.
Let us analyse further that request for assistance to die – is it actually for assistance to die or for relief of suffering? I am quite convinced that such requests are fundamentally a desire to be relieved of suffering. The patient accepts that death is preferable to that continuing distress. If the suffering can be relieved, the request for assistance dissipates. These people do not want to die – they want to live, but without unbearable suffering.
At this point it is pertinent to reflect on the nature of suffering. Monash University Palliative Care Professor Michael Ashby wrote – “For many people who are dying it is not just a question of comfort or absence of physical suffering, but a loss of function, independence and role which are hardest to bear.” The renowned American physician and medical ethicist Eric Cassel stated “Suffering is an affliction of the person, not the body”. Suffering is not simply pain or other physical symptoms. Dependency is an example of existential and psychological suffering.
Dependency derives from physical deterioration, but creates an existential suffering that is additional to the physical state. The decline, actual or potential, in physical health creates a suite of existential distress which leads to profound psychological suffering. A loss of role and meaning in life, a sense of being a burden to others,
powerlessness and loss of control over one’s own life, fear of loss of personality and cognition, loss of dignity, hopelessness, and a loss of any enjoyment in life are profound existential sufferings.
These losses lead to extreme anxiety, fear or even terror. They may indeed lead to clinical depression, but it is not depression per se, but an integral and compounding part of the distress. That depression is exceedingly hard to alter, unless the physical symptoms can be alleviated. Most dying patients have a combination of physical, psychological and existential pain, referred to in palliative care as a ‘total pain syndrome’.
What options does a doctor have when facing this situation? I suggest there are six options.
The first option. The doctor can reject the request for assistance to die out of hand, shutting the door firmly in his patient’s face. Denial by the doctor forces the patient to continue suffering. Of this option, Palliative care Professor Robert Twycross, even though he is opposed to euthanasia, said – “A doctor who leaves a patient to suffer intolerably is morally more reprehensible than the doctor who performs euthanasia.” Such denial may simply drive that person to seek a violent and undignified end. Denial may even force the person to cease eating and drinking in order to die. This option is clearly unethical.
The second option The doctor may respectfully deflect the request, exploring its origins, and attempting to alter them – this is the typical palliative care approach, but it may not succeed. What then? The third option The doctor may discuss refusal of treatment, which may hasten death, with a promise of intensive palliation. But there may be no treatment to refuse, and no palliative treatment proportionate to the situation.
The fourth option The doctor can provide increasing doses of morphine, which become lethal by addition. Morphine has been used for easing and hastening death for centuries. It is extremely valuable for relieving pain, but even in massive doses it will not relieve all pain. In my book, I describe Betty’s suffering from neuropathic pain due to spinal cancer. Morphine will not relieve such pain – only an anaesthetic will do so. Morphine also depresses respiration, so that whilst it may ease pain, it may also hasten death. It is the only effective treatment for extreme breathlessness, but paradoxically relieves the symptom whilst hastening death. But a doctor cannot provide morphine for the relief of other non-painful suffering. Medicine’s panacea, morphine, is fair enough for intense pain, but it is totally inadequate, and harmful for relieving existential and psychological suffering.
The fifth option The doctor can provide ‘so-called’ deep continuous sedation. This is a complex concept that may be new to many, and needs some elaboration. Deep sedation involves the use of sedative drugs to render the patient deeply asleep, often in conjunction with morphine. The patient becomes oblivious of their suffering until death, which may take some days. That is why it is often described as ‘terminal sedation’, and is often harrowing to all who are close.
Terminal sedation is a well-kept secret, “rarely discussed in an open fashion”. Although in active use in palliative care for over 20 years, I only discovered its use by a strange accident 10 years ago, which I relate in my book. First described in 1988 for terminal restlessness, terminal sedation rapidly became widely used for an increasing range of indications. Ventafridda described in 1990 how he needed to use it in 50% of his patients receiving home palliative care. States of palliative futility, such as unrelievable pain, delirium, breathlessness, fatigue, nausea and vomiting, and psychological and existential suffering are all common pretexts for terminal sedation in palliative care.
Oblivion certainly relieves suffering when morphine alone will fail, or is not appropriate. A patient in a coma cannot ingest any food or fluids and will dehydrate, and may develop lethal pulmonary complications. However the provision of intensive care to such a dying patient is futile as it simply prolongs the dying process. It is not normally done. That person may die of the sedation before they die of their illness. Terminal sedation is a deliberate process which, whilst relieving suffering, can undoubtedly hasten death.
Doctors who are morally challenged by this either refrain from terminal sedation, use it in a miserly fashion, or provide sedation with formal anaesthetic protection and hydration, thereby causing their patients to remain in this induced coma for many days before dying. Janet Hardy, in a Lancet editorial, wrote – “The concept of sedation causes considerable unease in many palliative care workers, most of whom are ardently opposed to any form of euthanasia or physician-assisted suicide. There is concern that sedation as the best means of symptom control in the dying patient may be underused because of fear of employing ‘terminal sedation’.”
It is justified by some through ‘double effect’, a Catholic moral doctrine developed by St. Thomas Aquinas in the thirteenth century to justify some actions which seemed contrary to established dogma. Broadly speaking, this doctrine postulates that where an action may have both good (relief of suffering) and bad (hastening of death) effects, the action is justified if the bad effect is not intended. To protect the doctor’s morals, the creation of oblivion must be slow. Patients may argue that hastening death is not always bad, but they do not have a say in the double effect debate.
Ashby says such sedation is regarded as acceptable palliative care and such deaths are not reported to the Coroner. The decision to use terminal sedation, and the acceleration and depth of sedation, vary depending on the moral view of the doctor, and is very much controlled by the doctor rather than the patient.
British palliative care doctor, Derek Doyle, has written – “It is often said that a metaphorical halo shines over specialist palliative care and its practitioners with the result that some of its claims and assumptions have gone unchallenged by all but a few.”
Professor Erich Loewy is one of those few. I quote him at length because his comments are penetrating. “When patients ask for and seem to require sedation sufficient to render them unconscious at the end of their life, there can, in selected cases, be little ethical objection. Patients injected with overdoses of a drug with the intention of causing their deaths or patients kept unconscious with the intention of keeping them unconscious until death ensues are in the end both very much dead. To say that in the former case death was the intended consequence but in the latter to deny that death was the intended consequence seems, at the very least, disingenuous….. The difference is maintained for two reasons. The first is to escape legal difficulties; the second is a form of self-delusion aimed at giving comfort to the physician and the medical team. There is basically nothing wrong with accommodating the law when doing so does not conflict with ethical values or trying to minimize the anguish of the medical team. But self-delusion, because of its tendency to produce a form of unrecognized dishonesty, is not something to be encouraged”. He continued “I want to be clear. Although such a practice may shorten life, I do not in any way oppose maximal sedation and analgesia for patients at this stage of life. Indeed I can see no rational or humane argument against such a practice”. Loewy concludes by saying “But I do oppose the idea that we should engage in this practice for our own sake or the court’s sake. Ethics, if it must be anything, must be honest.”
Terminal sedation thus provides palliation by first eliminating consciousness, and ultimately eliminating life. However, one could ask “Why should a patient who requests a quick death be subjected to a prolonged dying?” The answer is that it is to protect the moral and legal interests of the doctor. Good ethical practice? Not in my view. Except for the dimension of time, terminal sedation is no different from physician assisted dying, which I am about to advocate.
The sixth option. The doctor may explore, and finally accede, to the rational patient’s request and provide physician assisted dying. Here I am referring to an action, taken by, or at the request of, a rational fully informed person, whose intention is to be relieved of intolerable suffering – an action that hastens death in a dignified manner. That action may involve the delivery of a lethal injection, or the prescription of lethal medication, which the patient ingests to end his own life.
There is only a rare need for the former, and personally I strongly favor the latter. Crucially, the provision of a lethal prescription for oral use leaves responsibility for the decision, and the action that causes death, where it belongs, with the suffering person. Control remains completely in the hands of the sufferer, to choose to end their life, and when, or not, as the case may be. It has far greater safety against the possibility of non-voluntary, even though well-intentioned, death.
The provision of lethal oral medication clearly fulfils a rational and persistent request for assistance to die, to die a good death, yet such practice is regarded as unethical by the AMA. More significantly, physician assisted dying has long been regarded as a serious crime, of aiding and abetting suicide, or of murder.
Thus, faced with a patient with intolerable suffering who is making a rational and persistent request for assistance, a doctor is on the edge of a moral and ethical abyss, but without any safety ropes. It also takes the doctor to the edge of, or even into, the ‘black hole’ of legal ambiguity.
Fear of prosecution has inhibited physician assisted dying, but research reveals that fear of prosecution does not prevent it. Fear of prosecution has also had a limiting effect on the aggressive use of morphine and sedatives. Doctors have, in fact, rarely been prosecuted for such offences; but because of their fear, it is their patients’ suffering which is multiplied.
So here is the ‘black hole’- the difficult choice between various ethical options, with varying degrees of legal and moral acceptance.
Deep continuous sedation and physician assisted dying, one apparently legal and the other not, both of which are applied to people with intolerable and unrelievable suffering who have requested assistance to die. Both deep sedation and a lethal injection can cause death; a lethal injection clearly does so, whereas sedation does not always do so, or does not always clearly do so. A lethal injection causes death quickly, whereas sedation does so slowly, creating a convenient mirage over the event. Evidence shows that both sedation and a lethal injection can be delivered without the explicit consent of the patient. A self administered oral drug, however, requires the complete control of the patient. A self administered drug will also cause death, but research in Oregon shows that 30% of legal lethal prescriptions are not used, but the prescription has provided valuable psychological palliation.
We have in Australia, no accurate information as to how often terminal sedation occurs. It is completely unregulated and there are no official guidelines. And this for a process which causes death! And of course, physician assisted dying, whilst it is acknowledged that it occurs, is also unreported and unmeasured.
In many ways, the distinction between these actions is that of time – in fact, deep sedation has been dubbed ‘slow euthanasia’, described as “the clinical practice of treating a terminally ill patient in a fashion that will assuredly lead to a comfortable death, but not too quickly” . One cannot help asking “How fast is murder, and how slow is good practice – where is the line? How can one draw a line?”
It is the absence of specific law for the medical profession that is responsible for the ‘black hole’. Let me explain.
Medicine is a particular activity which brings its practitioners in close proximity to death and the causation of death. Yet despite being in this unique and vulnerable position, there is no specific law to protect medical practitioners. A doctor who hastens the death of his intolerably suffering patient by an hour, or even a minute, is subject to the same law that applies to a ‘gun for hire’ such as ‘Benji’ Veniamin.
The Chief Justice of WA, Hon. Justice David Malcolm wrote –
“At present members of the medical profession are placed in a very difficult situation where they have patients who are terminally ill and suffering great pain and mental anguish or otherwise suffering, who know that matters need to be brought to a dignified end. The dilemma facing doctors is the twin obligations to preserve life and to relieve suffering. …. The question is should we leave doctors in this exposed position without statutory protection?”
Victorian Senior Counsel Richard McGarvie put it more bluntly –
“As the law stands, only the good sense of prosecuting authorities and juries stands between compassionate and courageous medical practitioners and convictions for murder.” To illustrate McGarvie’s point, to my knowledge only two doctors in Australia have been charged with either murder or manslaughter, or aiding and abetting suicide, in the last 45 years. Both were acquitted. It is therefore often argued that the lack of prosecutions of doctors should give the profession confidence that they are not at risk. So long as doctors assist patients with drugs of therapeutic value, such as analgesics and sedatives, they do remain relatively safe.
Doctors can foreseeably hasten death, whereas in all other circumstances it would be considered manslaughter. The reason is the 1957 English decision of Justice Devlin. Devlin, in the Crown v Adams, said that a doctor could use narcotic analgesics to relieve his patient’s pain and suffering, even though the foreseen but unintended consequence was to cause or hasten death. This is regarded by academic lawyers as a legal application of ‘double effect’. Professor Loane Skene and others however argue that there is no clear conceptual basis for the use of ‘double effect’ doctrine in law. It is an English legal precedent that is generally thought to apply in Australia, although it has never been tested here. Nevertheless, it seems that it allows for the use of narcotics and sedatives that may cause death, and it has saved many doctors from serious charges. It is thought by some that Devlin’s precedent applies to the suffering of psychological and existential pain, but it is by no means clear. Despite this precedent having been accepted for over 50 years, there is no clarity as to how or when it applies, and it may be applied without any patient consent.
I am not suggesting that Devlin’s precedent has not been helpful. Such precedents are very cosy in medical situations where the extraordinary range of contexts makes statutory law difficult, but they are lazy law. They apply to a particular situation, and their exact scope can be uncertain. They do not have the careful criteria of statute law, and may require some bunny to be the victim of a test case to define their limits. In the case of Devlin’s precedent, its scope has enlarged more as a result of unchallenged practice than through test cases.
It is somewhat ironic that Devlin’s precedent should have had such a far-reaching influence, since Dr Adams used morphine for his elderly patient after a stroke, not a notoriously painful condition, and not one for which morphine would be commonly provided. Moreover, Adams stood to gain under her will.
It seems to me that the reason for the reliance on this precedent is that the whole fabric of good palliative care would be destroyed if a doctor were charged for alleged excessive use of sedatives and narcotics. Should a doctor have to risk his practice and his freedom on such an uncertain basis? It is more likely that his or her patient will suffer rather than that the doctor will take such a risk.
The Dutch legal system reached a different conclusion to Devlin in similar circumstance. It applied the argument of necessity, or ‘force majeure’, to justify the use of drugs that end life to relieve suffering. English and Australian law seems to be uncomfortable with the idea of necessity, yet to a doctor, the concept of necessity as the basis of the Devlin precedent has more validity than double effect. The Menhennitt precedent in Victoria on abortion, another emotional, morally charged issue involving death, was clearly based on the principle of necessity. Why should the legal concept of necessity not also apply at the other end of life, when there is a medical necessity to relieve suffering that will only end with death? Professor Roger Magnusson argues powerfully for the preference of necessity over double effect.
It is notable that, in the absence of law appropriate to the circumstances of end of life medical practice, the medical profession has ‘made the law’. I refer in the first instance to the practice of withholding and withdrawing treatment. With the advent of new technologies to save and prolong life, such as artificial ventilation, doctors were faced with the problem of withdrawing treatment that had become futile, but that same withdrawal would directly cause the death of the patient. Doctors feared that they could be charged with murder, but they went ahead anyway, because they deemed it the proper thing to do. Prosecutors demurred from charges, and the practice of the law was changed, even if arguments about causation had to be invented which, according to Law Lord Mustill “seems to….require not manipulation of the law so much as its application in an entirely new and illogical way.”
The introduction of deep continuous sedation, with the clear potential to cause death, did not have the sanction of statutory law. It relied on an extension of the Devlin principle of legal double effect as applying to the deeply sedating effect of drugs other than morphine. Doctors welcomed this development for, as Australian palliative care Dr Alexandra Burke said “It provided a readily available means of controlling symptoms and overcoming patient distress where no feasible alternative existed before.” Potentially death hastening treatment was introduced and no one was charged. Compassionate doctors had again remade the law.
It seems quite clear that death-hastening medical treatment that is palliative in nature will not be questioned, unless someone complains. Like Professor Loewy, I do not disagree with such death hastening treatment. Nevertheless such treatment goes on without any guidelines, without the necessity for any second opinions, medical or psychiatric, sometimes without consent, without the necessity to report such action to the coroner, and without any official oversight. There is no knowledge as to how frequently deep continuous sedation is used in Australia. And yet many in palliative care criticize the Dutch who have subjected their end of life medical practices to relentless scrutiny!
It is clear to me that the law ties itself in knots over medically hastened deaths because it applies the same law and legal principles to such medical deaths as it does to vicious murders. It then tries to justify the obvious problems this causes by dodgy precedents, dodgy arguments about causation, and by turning a blind eye to much that goes on. To paraphrase Shakespeare, the law is “honored more in the breach than the observance”. It assumes that medical practice is above board – it probably is, but how would any one know? Don’t forget Dr Harold Shipman.
There are two longstanding legal principles which, to me, are integral to the problem. The first is that consent is not a defence to murder or assisting suicide. Consent, as a reflection of autonomy, is a fundamental principle in medicine, and it changes many medical acts from criminal to acceptable. It is the most powerful way to determine that suffering is intolerable and that life threatening palliation is appropriate. It converts medical acts that might be dubious to acts that are transparent and correct. I suggest that consent is of the greatest importance in establishing a new paradigm for medical acts that hasten death. Medical acts that hasten death are unique. They are the only acts in the drama of human affected death where the view of the central player, the dying person, can be reliably established. The law, unlike medicine, completely ignores the choice, and therefore consent, of the patient. Why is this not taken into account in law? It is a gold standard that should always be demonstrated when making an ethical medical, and I would say, legal judgment. After all, consent makes sexual intercourse a legal act of love – without consent it is a crime.
Physician assisted dying, in my opinion, may also occasionally be an act of love, but is always an act of respect.
The second issue is intention, which is the corner-stone of criminal prosecution in capital matters. Where a known criminal shoots at close range and kills for payment some one he has never met, it can be reasonably argued that it was his intention to kill. Intention is not always so clear. Medical intentions are complex. Dr. Timothy Quill wrote “Multi-layered intentions are present in most, if not all, end of life decisions”. Jessica Corner, Director of the Centre for Palliative Care Studies at the Royal Marsden Hospital confirms this complexity – “The easing of death, as an intentional double effect, is common place in palliative care and general practice.” That is to say, both intentions, palliation and easing, or one might say hastening, of death are present. She went on to say “ Palliative care needs to take the lead by making clear the strategies it employs for managing difficult situations at the end of life, and, when double effect is used with a view that death is a likely and welcome secondary consequence, to be open about this.”
Note that death is a welcome secondary consequence.
I completely concur with this position, and believe that in every instance where a doctor hastens death, he or she does so with the primary intention of relieving suffering, but acknowledging that death may be an unavoidable consequence. This is so whether the intervention is by deep continuous sedation, lethal injection or the provision of medication for the patient’s ingestion. To attempt to distinguish some palliative acts as having the primary intention to kill, while maintaining that others do not have that intention, or only a secondary intention, is foolish. The Council of Judicial and Ethical Affairs of the American Medical Association wrote – “The ethical distinction between providing palliative care that may have fatal side effects and providing euthanasia is subtle because in both cases the action that caused death is performed with the purpose of relieving suffering.” A final comment on intention from Professor Loewy – “At least in law, and I would reasonably hold the same true for ethics, one is responsible not only for what one has clearly intended, but also for what one could reasonably foresee. In terminal sedation, not only is the patient’s death clearly foreseen, it is in fact the end point of what is being done. Clearly (and however it may be cloaked by the use of language), the intent here is more than just the clear goal of relieving pain and suffering. Because the goal of relieving pain and suffering adequately can be attained only by obtunding the patient until death ensues, the patient’s death becomes the end point and, therefore, one of the intended goals. These goals do not differ from those of physician assisted suicide, or, for that matter, voluntary euthanasia. …. Terminal sedation, we would claim, differs from some form of voluntary active euthanasia mainly in that it has not been, and is unlikely to be, challenged.”
While Loewy points out that an intention of deep sedation is to hasten death, he argues that it is not the primary intention, which is to relieve suffering. The occurrence of death is very much a secondary intention, an unavoidable intention. His analysis confirms in spades my third medical given, that some suffering will only be relieved by death.
While these medical views reveal the inadequacy of intention as a yardstick, Roger Magnusson confirms this from the legal perspective, agreeing that doctors’ intentions may be “ambiguous and inscrutable”.
In 1992, Dr Nigel Cox, a respected British rheumatologist, could not relieve, with morphine, the appalling pain of his patient with end-stage rheumatoid arthritis. She, and her family, pleaded for his help to end her suffering. Like me in 1992, Cox had not heard of terminal sedation. Cox injected her with potassium chloride, and recorded the fact – this was a drug with no effect other than to stop the heart. He was convicted of attempted murder, rather than murder simply because the body had been cremated before a complaint was made. Had he injected her with the potentially lethal sedative pentobarbital, he would almost certainly not have been charged. To hasten her death with a barbiturate would be palliation, but with potassium it was murder.
Dr Cox, a decent honorable professional, was acting in the best interests of his patient. Was he acting humanely and with compassion? Was he acting maliciously or for personal benefit? He was sacrificed upon the legal altar, to maintain the façade and humbug of inadequate law. To prove my point, he was given a suspended sentence – for attempted murder! One has to ask whether the drug used to hasten death, or the time taken to die, either quickly or slowly, is sufficient reasons to distinguish between a criminal act and good medical practice. If patients are to receive humane treatment at the end of life, the law needs to protect doctors such as Nigel Cox from unnecessary and punitive prosecutions.
It is a fact that a doctor can prescribe, and deliver, injectable drugs, clearly foreseeing that they will hasten or cause death, providing they are the ‘right’ drugs, those with approved therapeutic effect. In the same circumstance, a doctor could also prescribe drugs for oral consumption. In my book relate how I prescribed oral morphine and sedatives to my patient with prostate cancer, the same drugs as used in terminal sedation. I could foresee that he might use them to end his life, which he did. I reported this to the police, and was not charged – in fact, I could not be charged, because I was providing necessary drugs for pain and insomnia, even though it could be argued that I had aided his suicide.
I describe how I prescribed oral barbiturates to Susan, a young woman with an inoperable brain tumour, explaining how the drugs might be used to end her life.
However, in the end, Susan died by terminal sedation, ‘naturally’ as it were, two and a half years later. She did not use my medication, but it provided enormous palliation by giving her the sense of control over the end of her life. She had what the Melbourne Age journalist Pamela Bone described as “the knowledge”. No amount of gratuitous reassurance could have given her that security.
A more important point is this – although given advice and the means, she did not take her own life, demonstrating that it the intention of the sufferer that is pertinent, not that of the doctor.
In 2005, I assisted Steve Guest to die. He had terminal oesophageal cancer, and despite tube feeding, was wasting away in pain. Steve died of a lethal oral dose of pentobarbital. stated to the press and the police that I had given him control over the end of his life, and additionally on radio and television that I had given him advice about barbiturates, and that I had given him medication. The coroner, after detailed discussions with the police and DPP, has closed the case without an open inquest, despite it being requested by Steve’s brothers and myself. Is this the oral equivalent of double effect by injection? One has to ask, is aiding and abetting ‘suicide’ a crime in the medical context? Is medical practice again creating a new interpretation of the law?
Maybe, but good law depends on the defined and refined use of language.
There is no good law where the language does not exist.
Steve’s death provided the final impetus to my view that there is a ‘benign’ conspiracy between the police, coroners, prosecutorial authorities and government to avoid prosecution of doctors who help their patients to die, with their consent and for the relief of their suffering, even if there is strong circumstantial evidence that the law has been broken. In my opinion, this conspiracy occurs because the authorities see that doctors are between a rock and a hard place, and they are themselves between a rock and a hard place. Yet these same authorities prosecute so-called lay ‘mercy killers’, piously invoking the need for deterrence and the rule of law, yet ignore these principles when the medical profession is concerned.
Analysis of lay ‘mercy killing is instructive. Margaret Otlowski has stated “It is evident …that a glaring gap exists between law in theory and the administration of the law in practice” and “the enormous discrepancy between the law in theory and the law in practice threatens to undermine public confidence in the law and bring it into disrepute Because the present criminal law principles which treat motive as irrelevant are widely perceived as being inappropriate in mercy killing cases, artificial means are frequently used to circumvent the full rigour of the criminal law; for example, the sanctioning of charges fro a lesser offence notwithstanding clear evidence to the contrary, the acceptance of arguments based upon lack of causation, and ‘sentimental acquittals’ from juries.” And it seems to me that our judges make their feelings known by the almost universal application of non-custodial sentences. Otlowski makes the point that the majority of these ‘crimes’ would not occur if legislation for physician assisted dying existed.
Which leads one to ask ‘what IS the law relating to hastening death in a medical context’? There is a chink of enlightenment in the preamble to the Victorian Medical Treatment Act of 1988 which says “the Parliament recognises that it is desirable to ensure that dying patients receive maximum relief from pain and suffering”. Does this justify my providing Steve Guest with advice and medication? I am not sure – it remains uncertain without a clear judicial precedent, or statutory law. One can come to no other conclusion than that there is no law that any doctor can rely on.
This situation means that people with similar medical contexts will receive widely differing outcomes. It is entirely arbitrary whether they get the treatment they want. It depends on their doctor’s training, experience, beliefs and courage. It depends on the nature of their disease, whether it is terminal and painful or chronic and non-painful. It depends on where they are being cared for – in a public environment such as a hospital, or the privacy of their own home. And it depends on the sufferer’s education, influence and awareness of the medical system. As philosopher Professor Ronald Dworkin stated, in ‘The philosophers’ brief’ to the US Supreme Court, “the current two-tier system – a chosen death and an end to pain outside the law for those with connections, and stony refusals for most other people – is one of the greatest scandals of contemporary medical practice”. It does not depend on the law. These are not the hallmarks of a just legal system. Yet many doctors, including those in palliative care and the AMA support this status quo, which can only be described as covert, cosy, malleable, and hypocritical.
Medical practice at the end of life is a unique area of human endeavour that requires particular regulation, but none exists. I have argued that the law has failed to develop in response to changes in modern medicine, in end of life complexities, and also to changing community attitudes. The law seems to allow, without any scrutiny or guidelines, death hastening acts, some of which are considered to be legal and some not. The law seems to allow certain palliative acts that are not those that most people would prefer, and denies others, that they would choose, given the option. It has relied on vague precedents that accept that if medical acts are intended to be palliative, then they will not be prosecuted. Because of this ‘black hole’ in the law, medical practice at the end of life is entirely arbitrary, depending to a great extent on the courage and moral view of your doctor. Surely the rock can be moved and the hard place softened. It can be done, based on the principles of autonomy, as reflected by consent, and the necessity to relieve suffering, as reflected by palliative acts. At the end of the day, it is not doctors who suffer because of the ‘black hole’ but their patients. One day that might be your mother, or your father, or you.
D.Roy, Journal of Palliative Care 1990;6:3;
B.Gert et al, “”An alternative to physician assisted suicide” in “Physician assisted suicide – expanding the debate” Ed. M.P.Battin, Routledge (1998)
R.Hunt et al, Palliative Medicine 9 (1995): 167
D.Meier, Annals of Internal Medicine 1997;127;225
D.Martin et al, Lancet 2000;356:1672
M.Ashby, Medical Journal of Australia 1995;162:596
E.Cassel, Annals of Internal Medicine 1999;131:531
R.Twycross, Journal of the Royal Society of Medicine 1996;89:61
Rodney Syme, A Good Death- An Argument for Voluntary Euthanasia, 2008 MUP
V.Ventafridda et al, Palliative Care 1990;6:7
J.Hardy, Lancet 2000;356:1867
D.Doyle, Journal of Pain and Symptom Management 1992;7:302
E.Loewy, Archives of Internal Medicine 2001;161:329
A.Billings, S.Block, Journal of Palliative Care 1996;12:21
A.Billings, S.Block, ibid
D.Malcolm, ANZ Medical Journal,1998;28:46
R.McGarvie, The Age
L.Skene, Law and Medical Practice: duties, claims, and defences, Butterworths (2003)
R.Magnusson, Journal of Law, Medicine and Ethics Fall (2006), 559-569
A.Burke et al, Medical Journal of Australia 1991;155:485
T.Quill, Journal of the American Medical Association 1993;329:1039
J.Corner, British Medical Journal 1997;315:1242
AMA Council of Judicial and Ethical Affairs, Journal of the American Medical Association 1992;267:2229
E.Loewy, ibid
R.Magnusson, ibid
M.Otlowski, Criminal Law Journal, 1993;17:10
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A GOOD DEATH – A CHALLENGE TO LAW AND MEDICAL ETHICS
What is a good death? Well, it is the antithesis of a bad death. In my view, a good death is not what Philip Aries described as a ‘wild death’, an unprepared death without peace, especially in the midst of futile attempts to prolong life. Nor, as Dylan Thomas so famously wrote – “Do not go gentle into that good night, Rage, rage against the dying of the light”.
Some might see the phrase a ‘good death’ as an oxymoron; philosopher Margaret Pabst Battin coined the term ‘least worst death’ which may, in reality, be nearer the mark.
It is clearly ¬highly subjective – what you regard as a ‘good death’ is a good death for you. It may not be for me. For example, some Catholics see salvific value in suffering at the end of life. But research shows that for most people the issues are clear.
A good death involves acceptance of the reality of approaching death, which allows clear communication with family and friends of their value to you and their place in your life. A good death requires a calm state of mind, devoid of toxic anxiety. It requires a minimum of suffering, certainly not intolerable suffering in the broadest sense of that word. A good death means being able to say goodbye, and not dying alone. And for many it requires control of the dying process, with the ability to choose when, where and how one dies. It requires dying with peace, dignity and security.
How, then, does our current situation stack up against that model?
Let me state six ‘givens’, or unarguable basic medical positions.
The first given – that dying may be associated with intolerable suffering, and there may be a crescendo of suffering as death approaches.
The second given – that palliative care cannot relieve all the pain and suffering of dying patients. This is agreed by Palliative Care Australia.
The third given – some suffering will only be relieved by death.
The fourth given – some patients rationally and persistently request assistance to die. This has also been acknowledged by Palliative Care Australia. This is well expressed by Gert and colleagues, who said “When patients have terminal diseases, it is generally the case that when they want to die, it is rational for them to choose death.” Such requests have been measured within a palliative care unit. Hunt and Maddocks recorded the views of 331 of their patients who died in palliative care over a two year period – “ Eleven per cent said “I wish it would hurry up”; 6% said “could you hurry it up”; and [another] 6% said “please do something now”.
The fifth given – the doctors duty to relieve suffering. This is a long-standing responsibility. In the 18th century, in his lectures on the duties of a physician, Dr John Gregory stated “It is as much the business of a physician to alleviate pain, and to smooth the avenues to death when unavoidable, as to cure diseases”. This is mirrored in modern times by New York palliative care specialist Diane Meier –
“A peaceful death must be acknowledged as a legitimate goal of medicine, and as an integral part of a physician’s responsibilities.” If only it were as simple as just saying so. While this principle has not altered from Gregory to Meier, the manner of its implementation has done so, yet is still the subject of bitter debate.
The sixth given – the doctor’s duty to respect patient autonomy. When I entered medical practice in 1960, it was into a world where the doctor thought he knew best, most patients did what they were told, and discussion was not encouraged. What a revolution has occurred in the last 50 years. Douglas Martin and colleagues wrote in 2000 “The principle of autonomy is the dominant ethic of health care in North America and Western Europe” , and, of course, Australia. Even so, not all doctors honour this principle.
So there are the six givens. Doctors do have a duty to relieve suffering and to respect autonomy, and patients do make rational and persistent requests for assistance to die. Accepting these givens, it should be clear that doctors face difficult challenges in achieving a good death for their patients.
Is it unreasonable for someone with intolerable suffering, who knows she is going to die, to wish for a good death? To say goodbye and go to sleep, and die quickly, peacefully and with dignity? And we should also acknowledge that the notion of intolerable suffering, and of dignity in dying are, like a good death, subjective matters, properly determined by the suffering individual.
Let us analyse further that request for assistance to die – is it actually for assistance to die or for relief of suffering? I am quite convinced that such requests are fundamentally a desire to be relieved of suffering. The patient accepts that death is preferable to that continuing distress. If the suffering can be relieved, the request for assistance dissipates. These people do not want to die – they want to live, but without unbearable suffering.
At this point it is pertinent to reflect on the nature of suffering. Monash University Palliative Care Professor Michael Ashby wrote – “For many people who are dying it is not just a question of comfort or absence of physical suffering, but a loss of function, independence and role which are hardest to bear.” The renowned American physician and medical ethicist Eric Cassel stated “Suffering is an affliction of the person, not the body”. Suffering is not simply pain or other physical symptoms. Dependency is an example of existential and psychological suffering.
Dependency derives from physical deterioration, but creates an existential suffering that is additional to the physical state. The decline, actual or potential, in physical health creates a suite of existential distress which leads to profound psychological suffering. A loss of role and meaning in life, a sense of being a burden to others,
powerlessness and loss of control over one’s own life, fear of loss of personality and cognition, loss of dignity, hopelessness, and a loss of any enjoyment in life are profound existential sufferings.
These losses lead to extreme anxiety, fear or even terror. They may indeed lead to clinical depression, but it is not depression per se, but an integral and compounding part of the distress. That depression is exceedingly hard to alter, unless the physical symptoms can be alleviated. Most dying patients have a combination of physical, psychological and existential pain, referred to in palliative care as a ‘total pain syndrome’.
What options does a doctor have when facing this situation? I suggest there are six options.
The first option. The doctor can reject the request for assistance to die out of hand, shutting the door firmly in his patient’s face. Denial by the doctor forces the patient to continue suffering. Of this option, Palliative care Professor Robert Twycross, even though he is opposed to euthanasia, said – “A doctor who leaves a patient to suffer intolerably is morally more reprehensible than the doctor who performs euthanasia.” Such denial may simply drive that person to seek a violent and undignified end. Denial may even force the person to cease eating and drinking in order to die. This option is clearly unethical.
The second option The doctor may respectfully deflect the request, exploring its origins, and attempting to alter them – this is the typical palliative care approach, but it may not succeed. What then? The third option The doctor may discuss refusal of treatment, which may hasten death, with a promise of intensive palliation. But there may be no treatment to refuse, and no palliative treatment proportionate to the situation.
The fourth option The doctor can provide increasing doses of morphine, which become lethal by addition. Morphine has been used for easing and hastening death for centuries. It is extremely valuable for relieving pain, but even in massive doses it will not relieve all pain. In my book, I describe Betty’s suffering from neuropathic pain due to spinal cancer. Morphine will not relieve such pain – only an anaesthetic will do so. Morphine also depresses respiration, so that whilst it may ease pain, it may also hasten death. It is the only effective treatment for extreme breathlessness, but paradoxically relieves the symptom whilst hastening death. But a doctor cannot provide morphine for the relief of other non-painful suffering. Medicine’s panacea, morphine, is fair enough for intense pain, but it is totally inadequate, and harmful for relieving existential and psychological suffering.
The fifth option The doctor can provide ‘so-called’ deep continuous sedation. This is a complex concept that may be new to many, and needs some elaboration. Deep sedation involves the use of sedative drugs to render the patient deeply asleep, often in conjunction with morphine. The patient becomes oblivious of their suffering until death, which may take some days. That is why it is often described as ‘terminal sedation’, and is often harrowing to all who are close.
Terminal sedation is a well-kept secret, “rarely discussed in an open fashion”. Although in active use in palliative care for over 20 years, I only discovered its use by a strange accident 10 years ago, which I relate in my book. First described in 1988 for terminal restlessness, terminal sedation rapidly became widely used for an increasing range of indications. Ventafridda described in 1990 how he needed to use it in 50% of his patients receiving home palliative care. States of palliative futility, such as unrelievable pain, delirium, breathlessness, fatigue, nausea and vomiting, and psychological and existential suffering are all common pretexts for terminal sedation in palliative care.
Oblivion certainly relieves suffering when morphine alone will fail, or is not appropriate. A patient in a coma cannot ingest any food or fluids and will dehydrate, and may develop lethal pulmonary complications. However the provision of intensive care to such a dying patient is futile as it simply prolongs the dying process. It is not normally done. That person may die of the sedation before they die of their illness. Terminal sedation is a deliberate process which, whilst relieving suffering, can undoubtedly hasten death.
Doctors who are morally challenged by this either refrain from terminal sedation, use it in a miserly fashion, or provide sedation with formal anaesthetic protection and hydration, thereby causing their patients to remain in this induced coma for many days before dying. Janet Hardy, in a Lancet editorial, wrote – “The concept of sedation causes considerable unease in many palliative care workers, most of whom are ardently opposed to any form of euthanasia or physician-assisted suicide. There is concern that sedation as the best means of symptom control in the dying patient may be underused because of fear of employing ‘terminal sedation’.”
It is justified by some through ‘double effect’, a Catholic moral doctrine developed by St. Thomas Aquinas in the thirteenth century to justify some actions which seemed contrary to established dogma. Broadly speaking, this doctrine postulates that where an action may have both good (relief of suffering) and bad (hastening of death) effects, the action is justified if the bad effect is not intended. To protect the doctor’s morals, the creation of oblivion must be slow. Patients may argue that hastening death is not always bad, but they do not have a say in the double effect debate.
Ashby says such sedation is regarded as acceptable palliative care and such deaths are not reported to the Coroner. The decision to use terminal sedation, and the acceleration and depth of sedation, vary depending on the moral view of the doctor, and is very much controlled by the doctor rather than the patient.
British palliative care doctor, Derek Doyle, has written – “It is often said that a metaphorical halo shines over specialist palliative care and its practitioners with the result that some of its claims and assumptions have gone unchallenged by all but a few.”
Professor Erich Loewy is one of those few. I quote him at length because his comments are penetrating. “When patients ask for and seem to require sedation sufficient to render them unconscious at the end of their life, there can, in selected cases, be little ethical objection. Patients injected with overdoses of a drug with the intention of causing their deaths or patients kept unconscious with the intention of keeping them unconscious until death ensues are in the end both very much dead. To say that in the former case death was the intended consequence but in the latter to deny that death was the intended consequence seems, at the very least, disingenuous…..
The difference is maintained for two reasons. The first is to escape legal difficulties; the second is a form of self-delusion aimed at giving comfort to the physician and the medical team. There is basically nothing wrong with accommodating the law when doing so does not conflict with ethical values or trying to minimize the anguish of the medical team. But self-delusion, because of its tendency to produce a form of unrecognized dishonesty, is not something to be encouraged”. He continued “I want to be clear. Although such a practice may shorten life, I do not in any way oppose maximal sedation and analgesia for patients at this stage of life. Indeed I can see no rational or humane argument against such a practice”. Loewy concludes by saying “But I do oppose the idea that we should engage in this practice for our own sake or the court’s sake. Ethics, if it must be anything, must be honest.”
Terminal sedation thus provides palliation by first eliminating consciousness, and ultimately eliminating life. However, one could ask “Why should a patient who requests a quick death be subjected to a prolonged dying?” The answer is that it is to protect the moral and legal interests of the doctor. Good ethical practice? Not in my view. Except for the dimension of time, terminal sedation is no different from physician assisted dying, which I am about to advocate.
The sixth option. The doctor may explore, and finally accede, to the rational patient’s request and provide physician assisted dying. Here I am referring to an action, taken by, or at the request of, a rational fully informed person, whose intention is to be relieved of intolerable suffering – an action that hastens death in a dignified manner. That action may involve the delivery of a lethal injection, or the prescription of lethal medication, which the patient ingests to end his own life.
There is only a rare need for the former, and personally I strongly favor the latter. Crucially, the provision of a lethal prescription for oral use leaves responsibility for the decision, and the action that causes death, where it belongs, with the suffering person. Control remains completely in the hands of the sufferer, to choose to end their life, and when, or not, as the case may be. It has far greater safety against the possibility of non-voluntary, even though well-intentioned, death.
The provision of lethal oral medication clearly fulfils a rational and persistent request for assistance to die, to die a good death, yet such practice is regarded as unethical by the AMA. More significantly, physician assisted dying has long been regarded as a serious crime, of aiding and abetting suicide, or of murder.
Thus, faced with a patient with intolerable suffering who is making a rational and persistent request for assistance, a doctor is on the edge of a moral and ethical abyss, but without any safety ropes. It also takes the doctor to the edge of, or even into, the ‘black hole’ of legal ambiguity.
Fear of prosecution has inhibited physician assisted dying, but research reveals that fear of prosecution does not prevent it. Fear of prosecution has also had a limiting effect on the aggressive use of morphine and sedatives. Doctors have, in fact, rarely been prosecuted for such offences; but because of their fear, it is their patients’ suffering which is multiplied.
So here is the ‘black hole’- the difficult choice between various ethical options, with varying degrees of legal and moral acceptance.
Deep continuous sedation and physician assisted dying, one apparently legal and the other not, both of which are applied to people with intolerable and unrelievable suffering who have requested assistance to die. Both deep sedation and a lethal injection can cause death; a lethal injection clearly does so, whereas sedation does not always do so, or does not always clearly do so. A lethal injection causes death quickly, whereas sedation does so slowly, creating a convenient mirage over the event. Evidence shows that both sedation and a lethal injection can be delivered without the explicit consent of the patient. A self administered oral drug, however, requires the complete control of the patient. A self administered drug will also cause death, but research in Oregon shows that 30% of legal lethal prescriptions are not used, but the prescription has provided valuable psychological palliation.
We have in Australia, no accurate information as to how often terminal sedation occurs. It is completely unregulated and there are no official guidelines. And this for a process which causes death! And of course, physician assisted dying, whilst it is acknowledged that it occurs, is also unreported and unmeasured.
In many ways, the distinction between these actions is that of time – in fact, deep sedation has been dubbed ‘slow euthanasia’, described as “the clinical practice of treating a terminally ill patient in a fashion that will assuredly lead to a comfortable death, but not too quickly” . One cannot help asking “How fast is murder, and how slow is good practice – where is the line? How can one draw a line?”
It is the absence of specific law for the medical profession that is responsible for the ‘black hole’. Let me explain.
Medicine is a particular activity which brings its practitioners in close proximity to death and the causation of death. Yet despite being in this unique and vulnerable position, there is no specific law to protect medical practitioners. A doctor who hastens the death of his intolerably suffering patient by an hour, or even a minute, is subject to the same law that applies to a ‘gun for hire’ such as ‘Benji’ Veniamin.
The Chief Justice of WA, Hon. Justice David Malcolm wrote –
“At present members of the medical profession are placed in a very difficult situation where they have patients who are terminally ill and suffering great pain and mental anguish or otherwise suffering, who know that matters need to be brought to a dignified end. The dilemma facing doctors is the twin obligations to preserve life and to relieve suffering. …. The question is should we leave doctors in this exposed position without statutory protection?”
Victorian Senior Counsel Richard McGarvie put it more bluntly –
“As the law stands, only the good sense of prosecuting authorities and juries stands between compassionate and courageous medical practitioners and convictions for murder.”
To illustrate McGarvie’s point, to my knowledge only two doctors in Australia have been charged with either murder or manslaughter, or aiding and abetting suicide, in the last 45 years. Both were acquitted. It is therefore often argued that the lack of prosecutions of doctors should give the profession confidence that they are not at risk. So long as doctors assist patients with drugs of therapeutic value, such as analgesics and sedatives, they do remain relatively safe.
Doctors can foreseeably hasten death, whereas in all other circumstances it would be considered manslaughter. The reason is the 1957 English decision of Justice Devlin. Devlin, in the Crown v Adams, said that a doctor could use narcotic analgesics to relieve his patient’s pain and suffering, even though the foreseen but unintended consequence was to cause or hasten death. This is regarded by academic lawyers as a legal application of ‘double effect’. Professor Loane Skene and others however argue that there is no clear conceptual basis for the use of ‘double effect’ doctrine in law. It is an English legal precedent that is generally thought to apply in Australia, although it has never been tested here. Nevertheless, it seems that it allows for the use of narcotics and sedatives that may cause death, and it has saved many doctors from serious charges. It is thought by some that Devlin’s precedent applies to the suffering of psychological and existential pain, but it is by no means clear. Despite this precedent having been accepted for over 50 years, there is no clarity as to how or when it applies, and it may be applied without any patient consent.
I am not suggesting that Devlin’s precedent has not been helpful. Such precedents are very cosy in medical situations where the extraordinary range of contexts makes statutory law difficult, but they are lazy law. They apply to a particular situation, and their exact scope can be uncertain. They do not have the careful criteria of statute law, and may require some bunny to be the victim of a test case to define their limits. In the case of Devlin’s precedent, its scope has enlarged more as a result of unchallenged practice than through test cases.
It is somewhat ironic that Devlin’s precedent should have had such a far-reaching influence, since Dr Adams used morphine for his elderly patient after a stroke, not a notoriously painful condition, and not one for which morphine would be commonly provided. Moreover, Adams stood to gain under her will.
It seems to me that the reason for the reliance on this precedent is that the whole fabric of good palliative care would be destroyed if a doctor were charged for alleged excessive use of sedatives and narcotics. Should a doctor have to risk his practice and his freedom on such an uncertain basis? It is more likely that his or her patient will suffer rather than that the doctor will take such a risk.
The Dutch legal system reached a different conclusion to Devlin in similar circumstance. It applied the argument of necessity, or ‘force majeure’, to justify the use of drugs that end life to relieve suffering. English and Australian law seems to be uncomfortable with the idea of necessity, yet to a doctor, the concept of necessity as the basis of the Devlin precedent has more validity than double effect. The Menhennitt precedent in Victoria on abortion, another emotional, morally charged issue involving death, was clearly based on the principle of necessity. Why should the legal concept of necessity not also apply at the other end of life, when there is a medical necessity to relieve suffering that will only end with death? Professor Roger Magnusson argues powerfully for the preference of necessity over double effect.
It is notable that, in the absence of law appropriate to the circumstances of end of life medical practice, the medical profession has ‘made the law’. I refer in the first instance to the practice of withholding and withdrawing treatment. With the advent of new technologies to save and prolong life, such as artificial ventilation, doctors were faced with the problem of withdrawing treatment that had become futile, but that same withdrawal would directly cause the death of the patient. Doctors feared that they could be charged with murder, but they went ahead anyway, because they deemed it the proper thing to do. Prosecutors demurred from charges, and the practice of the law was changed, even if arguments about causation had to be invented which, according to Law Lord Mustill “seems to….require not manipulation of the law so much as its application in an entirely new and illogical way.”
The introduction of deep continuous sedation, with the clear potential to cause death, did not have the sanction of statutory law. It relied on an extension of the Devlin principle of legal double effect as applying to the deeply sedating effect of drugs other than morphine. Doctors welcomed this development for, as Australian palliative care Dr Alexandra Burke said “It provided a readily available means of controlling symptoms and overcoming patient distress where no feasible alternative existed before.” Potentially death hastening treatment was introduced and no one was charged. Compassionate doctors had again remade the law.
It seems quite clear that death-hastening medical treatment that is palliative in nature will not be questioned, unless someone complains. Like Professor Loewy, I do not disagree with such death hastening treatment. Nevertheless such treatment goes on without any guidelines, without the necessity for any second opinions, medical or psychiatric, sometimes without consent, without the necessity to report such action to the coroner, and without any official oversight. There is no knowledge as to how frequently deep continuous sedation is used in Australia. And yet many in palliative care criticize the Dutch who have subjected their end of life medical practices to relentless scrutiny!
It is clear to me that the law ties itself in knots over medically hastened deaths because it applies the same law and legal principles to such medical deaths as it does to vicious murders. It then tries to justify the obvious problems this causes by dodgy precedents, dodgy arguments about causation, and by turning a blind eye to much that goes on. To paraphrase Shakespeare, the law is “honored more in the breach than the observance”. It assumes that medical practice is above board – it probably is, but how would any one know? Don’t forget Dr Harold Shipman.
There are two longstanding legal principles which, to me, are integral to the problem.
The first is that consent is not a defence to murder or assisting suicide. Consent, as a reflection of autonomy, is a fundamental principle in medicine, and it changes many medical acts from criminal to acceptable. It is the most powerful way to determine that suffering is intolerable and that life threatening palliation is appropriate. It converts medical acts that might be dubious to acts that are transparent and correct. I suggest that consent is of the greatest importance in establishing a new paradigm for medical acts that hasten death. Medical acts that hasten death are unique. They are the only acts in the drama of human affected death where the view of the central player, the dying person, can be reliably established. The law, unlike medicine, completely ignores the choice, and therefore consent, of the patient. Why is this not taken into account in law? It is a gold standard that should always be demonstrated when making an ethical medical, and I would say, legal judgment. After all, consent makes sexual intercourse a legal act of love – without consent it is a crime.
Physician assisted dying, in my opinion, may also occasionally be an act of love, but is always an act of respect.
The second issue is intention, which is the corner-stone of criminal prosecution in capital matters. Where a known criminal shoots at close range and kills for payment some one he has never met, it can be reasonably argued that it was his intention to kill. Intention is not always so clear. Medical intentions are complex. Dr. Timothy Quill wrote “Multi-layered intentions are present in most, if not all, end of life decisions”. Jessica Corner, Director of the Centre for Palliative Care Studies at the Royal Marsden Hospital confirms this complexity – “The easing of death, as an intentional double effect, is common place in palliative care and general practice.” That is to say, both intentions, palliation and easing, or one might say hastening, of death are present. She went on to say “ Palliative care needs to take the lead by making clear the strategies it employs for managing difficult situations at the end of life, and, when double effect is used with a view that death is a likely and welcome secondary consequence, to be open about this.”
Note that death is a welcome secondary consequence.
I completely concur with this position, and believe that in every instance where a doctor hastens death, he or she does so with the primary intention of relieving suffering, but acknowledging that death may be an unavoidable consequence. This is so whether the intervention is by deep continuous sedation, lethal injection or the provision of medication for the patient’s ingestion. To attempt to distinguish some palliative acts as having the primary intention to kill, while maintaining that others do not have that intention, or only a secondary intention, is foolish.
The Council of Judicial and Ethical Affairs of the American Medical Association wrote – “The ethical distinction between providing palliative care that may have fatal side effects and providing euthanasia is subtle because in both cases the action that caused death is performed with the purpose of relieving suffering.”
A final comment on intention from Professor Loewy – “At least in law, and I would reasonably hold the same true for ethics, one is responsible not only for what one has clearly intended, but also for what one could reasonably foresee. In terminal sedation, not only is the patient’s death clearly foreseen, it is in fact the end point of what is being done. Clearly (and however it may be cloaked by the use of language), the intent here is more than just the clear goal of relieving pain and suffering. Because the goal of relieving pain and suffering adequately can be attained only by obtunding the patient until death ensues, the patient’s death becomes the end point and, therefore, one of the intended goals.
These goals do not differ from those of physician assisted suicide, or, for that matter, voluntary euthanasia. …. Terminal sedation, we would claim, differs from some form of voluntary active euthanasia mainly in that it has not been, and is unlikely to be, challenged.”
While Loewy points out that an intention of deep sedation is to hasten death, he argues that it is not the primary intention, which is to relieve suffering. The occurrence of death is very much a secondary intention, an unavoidable intention. His analysis confirms in spades my third medical given, that some suffering will only be relieved by death.
While these medical views reveal the inadequacy of intention as a yardstick, Roger Magnusson confirms this from the legal perspective, agreeing that doctors’ intentions may be “ambiguous and inscrutable”.
In 1992, Dr Nigel Cox, a respected British rheumatologist, could not relieve, with morphine, the appalling pain of his patient with end-stage rheumatoid arthritis. She, and her family, pleaded for his help to end her suffering. Like me in 1992, Cox had not heard of terminal sedation. Cox injected her with potassium chloride, and recorded the fact – this was a drug with no effect other than to stop the heart. He was convicted of attempted murder, rather than murder simply because the body had been cremated before a complaint was made. Had he injected her with the potentially lethal sedative pentobarbital, he would almost certainly not have been charged. To hasten her death with a barbiturate would be palliation, but with potassium it was murder.
Dr Cox, a decent honorable professional, was acting in the best interests of his patient. Was he acting humanely and with compassion? Was he acting maliciously or for personal benefit? He was sacrificed upon the legal altar, to maintain the façade and humbug of inadequate law. To prove my point, he was given a suspended sentence – for attempted murder! One has to ask whether the drug used to hasten death, or the time taken to die, either quickly or slowly, is sufficient reasons to distinguish between a criminal act and good medical practice. If patients are to receive humane treatment at the end of life, the law needs to protect doctors such as Nigel Cox from unnecessary and punitive prosecutions.
It is a fact that a doctor can prescribe, and deliver, injectable drugs, clearly foreseeing that they will hasten or cause death, providing they are the ‘right’ drugs, those with approved therapeutic effect. In the same circumstance, a doctor could also prescribe drugs for oral consumption.
In my book relate how I prescribed oral morphine and sedatives to my patient with prostate cancer, the same drugs as used in terminal sedation. I could foresee that he might use them to end his life, which he did. I reported this to the police, and was not charged – in fact, I could not be charged, because I was providing necessary drugs for pain and insomnia, even though it could be argued that I had aided his suicide.
I describe how I prescribed oral barbiturates to Susan, a young woman with an inoperable brain tumour, explaining how the drugs might be used to end her life.
However, in the end, Susan died by terminal sedation, ‘naturally’ as it were, two and a half years later. She did not use my medication, but it provided enormous palliation by giving her the sense of control over the end of her life. She had what the Melbourne Age journalist Pamela Bone described as “the knowledge”. No amount of gratuitous reassurance could have given her that security.
A more important point is this – although given advice and the means, she did not take her own life, demonstrating that it the intention of the sufferer that is pertinent, not that of the doctor.
In 2005, I assisted Steve Guest to die. He had terminal oesophageal cancer, and despite tube feeding, was wasting away in pain. Steve died of a lethal oral dose of pentobarbital. stated to the press and the police that I had given him control over the end of his life, and additionally on radio and television that I had given him advice about barbiturates, and that I had given him medication. The coroner, after detailed discussions with the police and DPP, has closed the case without an open inquest, despite it being requested by Steve’s brothers and myself. Is this the oral equivalent of double effect by injection? One has to ask, is aiding and abetting ‘suicide’ a crime in the medical context? Is medical practice again creating a new interpretation of the law?
Maybe, but good law depends on the defined and refined use of language.
There is no good law where the language does not exist.
Steve’s death provided the final impetus to my view that there is a ‘benign’ conspiracy between the police, coroners, prosecutorial authorities and government to avoid prosecution of doctors who help their patients to die, with their consent and for the relief of their suffering, even if there is strong circumstantial evidence that the law has been broken. In my opinion, this conspiracy occurs because the authorities see that doctors are between a rock and a hard place, and they are themselves between a rock and a hard place. Yet these same authorities prosecute so-called lay ‘mercy killers’, piously invoking the need for deterrence and the rule of law, yet ignore these principles when the medical profession is concerned.
Analysis of lay ‘mercy killing is instructive. Margaret Otlowski has stated “It is evident …that a glaring gap exists between law in theory and the administration of the law in practice” and “the enormous discrepancy between the law in theory and the law in practice threatens to undermine public confidence in the law and bring it into disrepute Because the present criminal law principles which treat motive as irrelevant are widely perceived as being inappropriate in mercy killing cases, artificial means are frequently used to circumvent the full rigour of the criminal law; for example, the sanctioning of charges fro a lesser offence notwithstanding clear evidence to the contrary, the acceptance of arguments based upon lack of causation, and ‘sentimental acquittals’ from juries.” And it seems to me that our judges make their feelings known by the almost universal application of non-custodial sentences. Otlowski makes the point that the majority of these ‘crimes’ would not occur if legislation for physician assisted dying existed.
Which leads one to ask ‘what IS the law relating to hastening death in a medical context’? There is a chink of enlightenment in the preamble to the Victorian Medical Treatment Act of 1988 which says “the Parliament recognises that it is desirable to ensure that dying patients receive maximum relief from pain and suffering”. Does this justify my providing Steve Guest with advice and medication? I am not sure – it remains uncertain without a clear judicial precedent, or statutory law. One can come to no other conclusion than that there is no law that any doctor can rely on.
This situation means that people with similar medical contexts will receive widely differing outcomes. It is entirely arbitrary whether they get the treatment they want. It depends on their doctor’s training, experience, beliefs and courage. It depends on the nature of their disease, whether it is terminal and painful or chronic and non-painful. It depends on where they are being cared for – in a public environment such as a hospital, or the privacy of their own home. And it depends on the sufferer’s education, influence and awareness of the medical system.
As philosopher Professor Ronald Dworkin stated, in ‘The philosophers’ brief’ to the US Supreme Court, “the current two-tier system – a chosen death and an end to pain outside the law for those with connections, and stony refusals for most other people – is one of the greatest scandals of contemporary medical practice”. It does not depend on the law. These are not the hallmarks of a just legal system. Yet many doctors, including those in palliative care and the AMA support this status quo, which can only be described as covert, cosy, malleable, and hypocritical.
Medical practice at the end of life is a unique area of human endeavour that requires particular regulation, but none exists. I have argued that the law has failed to develop in response to changes in modern medicine, in end of life complexities, and also to changing community attitudes. The law seems to allow, without any scrutiny or guidelines, death hastening acts, some of which are considered to be legal and some not. The law seems to allow certain palliative acts that are not those that most people would prefer, and denies others, that they would choose, given the option. It has relied on vague precedents that accept that if medical acts are intended to be palliative, then they will not be prosecuted. Because of this ‘black hole’ in the law, medical practice at the end of life is entirely arbitrary, depending to a great extent on the courage and moral view of your doctor. Surely the rock can be moved and the hard place softened. It can be done, based on the principles of autonomy, as reflected by consent, and the necessity to relieve suffering, as reflected by palliative acts.
At the end of the day, it is not doctors who suffer because of the ‘black hole’ but their patients. One day that might be your mother, or your father, or you.
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R.McGarvie, The Age
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M.Otlowski, Criminal Law Journal, 1993;17:10
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