CHAPTER 7
A Passion for Control
The West has ideas about dying which are dominated by individualism, and this individualism, in turn, has influenced both the development of the hospice movement and the modern clamour for assisted suicide. The two great contemporary debates about dying – assisted suicide and advance directives, or living wills – are both informed by a passion for personal autonomy: for control.
LET ME DIE
The idea of the advance directive is superficially attractive. At the end of life, modern medical care is often unthinking and futile. Families and doctors sometimes collude – with the best of intentions – in subjecting those with no hope of recovery to painful, prolonged and ineffective treatments. The default setting of modern medicine is full intervention, unless you are instructed otherwise. Families and patients, moreover, may lack the necessary education and medical knowledge to make truly informed decisions. Very often, for example, when trying to nudge a family towards minimal intervention in the case of an acutely ill, very old person, I am told: ‘Just do everything you can, Doc.’
Frail old folk are commonly sent from nursing homes to Emergency Departments, where it is not unknown for them to die alone, on a trolley, in a busy corridor. For all sorts of reasons, administrative and legal, it is easier (for the nursing home and referring doctor) if these people die in hospital. Picture the scene: it is the Saturday evening of a Bank Holiday weekend, and a resident of a nursing home becomes acutely unwell. She is eighty-eight years old, has advanced dementia, and a number of other medical problems, including emphysema, angina, diabetes and leg ulcers. She has become more confused than usual, and has stopped eating and drinking. She has developed a fever and is a bit short of breath. The nurse on duty at the home calls the doctor, who is a locum employed by the out-of-hours deputizing service run by the local GP cooperative, not the patient’s usual doctor. The locum has never seen this patient before. The doctor examines the old woman and diagnoses a chest infection. Treating her with oral antibiotics in the nursing home is a potentially dangerous strategy: what if she deteriorates, or even dies? What if the family complain that not enough was done? Much safer to call for an ambulance and send the patient to the Emergency Department, where she becomes somebody else’s responsibility. In my hospital, during a single month in 2015, eleven patients transferred from nursing homes died within thirty minutes of arrival at the Emergency Department.
So our patient arrives at the hospital, and is wheeled past the drunks in the waiting room of the Emergency Department. All the cubicles are full, so she is left in the corridor. She is upset and frightened by this strange environment. After a long wait, during which she grows ever more bewildered and disorientated, she is seen and examined by a junior doctor. A chest X-ray shows pneumonia, and her blood oxygen levels are low, so she is moved to the resuscitation room, where she is given intravenous antibiotics and oxygen. Her condition gets worse during the night and the medical registrar contacts (with some difficulty) her family. The woman’s son eventually arrives at the hospital; he has not seen his mother for several weeks. The registrar patiently tells the son that his mother’s condition is deteriorating. She tries to explain that, in her view, more intensive treatment, such as mechanical ventilation (with a breathing machine) in intensive care would not be appropriate for his mother. The son finds it difficult to understand what is being said to him, but eventually agrees to be guided by the doctor. The woman’s condition steadily worsens, and the medical registrar pronounces her dead in the resuscitation room, at 5.00 a.m. The coroner is duly informed, a legal requirement when a nursing home resident dies.
The sequence of events I describe is not an uncommon one. Some cases are messier – for example, when the family demands intensive intervention against the advice of the doctors. Can we conceive of a better alternative for this lady? Well, yes, we can: a frail, demented woman with multiple serious medical problems would probably be best treated in the nursing home if she develops an acute illness such as pneumonia. True, she may possibly die of this pneumonia, but she will die in the environment that she has become comfortable with, and attended by the people who have cared for her. Many factors currently conspire against this: nursing homes are increasingly fearful of being accused of neglect; outside of routine office hours, a sick nursing-home resident is likely to be seen by a doctor who is unfamiliar with them; families – even those of elderly demented people – sometimes harbour unrealistic expectations of medical care.
One potential solution is to introduce advance directives for such patients. Willie Molloy, Professor of Geriatrics at University College Cork, is a leader in this field and has started a pilot programme of advance directives for nursing home residents in Cork. This programme is called ‘Let Me Decide’ and is quite complex. It starts with a Mini-Mental State Examination (MMSE), which yields a score that gives a reasonably good indication of whether or not the patient has dementia. A second score, the ‘Screening Instrument to Assess Capacity to complete an Advance Directive’ (SIACAD) is then calculated. If the person has dementia or lacks the capacity to fill in the form, a proxy is nominated. The patient (or the proxy) is offered a menu of options: so, for life-threatening illness, they can choose between four different levels of care: palliative, limited, surgical or intensive. In the event of a cardiac arrest, there are two choices: cardio-pulmonary resuscitation or not. In the event of feeding difficulties, there are two choices: ‘basic’ or ‘tube’. Several signatures (the patient, the proxy, the GP and the witness) are required.
A couple of years ago, I attended a lecture on advance directives. The speaker used several hypothetical clinical scenarios to illustrate his argument, and to provoke reaction from the audience. One of these was the case of a frail elderly man sent in from a nursing home with bleeding from his stomach. The usual initial approach to this problem is to carry out an endoscopy to diagnose the cause of bleeding (usually an ulcer); very often, the bleeding can be stopped by injecting or clipping the ulcer. This treatment is remarkably effective in many cases, and usually takes no longer than ten to fifteen minutes. It is nearly always performed under mild sedation, and I have carried out this procedure on many very old people with ‘multiple co-morbidity’ (several other diseases). On the Let Me Decide menu, however, this intervention would be classified as ‘surgical’. Had this old man’s treatment been guided by an advance directive – assuming he had decided against ‘surgical’ intervention − he would have been denied a simple, usually safe and potentially life-saving treatment. How could a lay person possibly know all this?
Advance directives provide endless potential opportunity for conflict. Siblings and spouses will quarrel over who should have the power of proxy; patients may challenge an assessment that concludes that they lack capacity. Large acute hospitals may need to employ lawyers to deal specifically with these documents. Hospital staff may waste valuable time trying to locate the document when the patient is admitted as an emergency case. Busy on-call staff may not bother to ascertain whether or not the patient has an advance directive, and proceed to treat them regardless. Relatives may put pressure on medical staff to override the document (this is a common occurrence in the US where advance directives have been legal for many years). In acute medicine, where there is doubt, doctors generally opt for full, invasive treatment. You can argue later.
My first experience of an advance directive document was not encouraging. An elderly man, a nursing home resident with dementia and a number of other medical problems, came under my care suffering from pneumonia and heart failure. His condition was not initially worrying, but during the night he became progressively more unwell, and was moved from the main emergency area into the resuscitation room. I went to see him, and decided that we needed to make a decision quickly about how far we should go with treatment. If his condition got any worse, we would have to decide if he should be admitted to the Intensive Care Unit. I spoke with the man and asked him who his nearest relative was
; he told me he didn’t have any immediate family and that his next-of-kin was a nephew. I phoned the nephew, who told me that his uncle had filled out a ‘living will’ at the nursing home. I searched in vain in his notes and referral letter for the advance directive; the nursing home hadn’t bothered to send it with him to the Emergency Department. I eventually obtained a faxed copy of the document, which clearly specified that this man did not wish to have cardio-pulmonary resuscitation (CPR), and thus, by extrapolation, admission to the Intensive Care Unit. I discussed the matter with my team: we concluded that had the man suffered a cardiac arrest in the night, he would have undergone cardio-pulmonary resuscitation; had this been successful – which was, admittedly, unlikely – he would have woken up in the Intensive Care Unit, intubated.
Advance directives will only encourage the creeping ‘lawyerization’ of medical practice. But my main concern with advance directives is this: in your health, and in your still vigorous middle age, or early old age, you might quite rightly regard, let us say, a devastating middle-cerebral artery stroke as a condition not worth living with – assuming, of course, that you know what a ‘devastating middle-cerebral artery stroke’ is. And the same goes for dementia, or motor neurone disease. The trouble is, you don’t know how you will react until that awful event occurs. You may well wish to cling onto life, no matter how diminished its quality. You may very well accept a life that in the fullness of your health you would have rejected as not worth living. The instinct to live is profoundly powerful, and in our health and vigour we underestimate it.
Let us take the example of locked-in syndrome, a type of brain-stem stroke which leaves the victim’s mind intact but deprived of nearly all bodily movement except, perhaps, for a flicker of the eye. They are literally locked in their own bodies. The condition became well known mainly because of Jean-Dominique Bauby’s account of the affliction, The Diving-Bell and the Butterfly (1997). Tony Nicklinson, who had the syndrome, campaigned for the right to have his life ended. Richard Ford was a fit, forty-one-year-old policeman based in Leeds when he was struck down with the same disorder. Nicklinson has since died (without any assistance), but Richard Ford clearly wants to live. He told the Sunday Times Magazine: ‘People think they can’t stand this, but you can and you do. People believe in me. I am determined not to let them or myself down. I have a lot to live for, a lot to look forward to. A lot of memories to make.’ He spoke to the journalist ‘with excruciating deliberation’, using his eye-gaze computer. And Richard Ford is not alone. A survey of French patients with locked-in syndrome showed that a majority who were interviewed reported a good quality of life. Richard Ford concluded with Yorkshire matter-of-factness: ‘The most important thing is you’re heard, your opinion still counts and you’re entitled to change your mind. I never wanted this and I might just prove everybody wrong, but I’ve never stopped wanting to go on living.’ What was ‘dull, miserable, demeaning, undignified and intolerable’ for Tony Nicklinson is not so for Richard Ford.
Explaining sometimes complex medical/technological issues to patients and families is often an insurmountable problem. ‘Informed consent’ is a legalistic fantasy, which works only for the truly ‘informed’, that is, educated, middle-class people with biomedical knowledge. We have fetishized ‘choice’, but choice, for many people, is bewildering. Medicine is now so complex that many, if not most, elderly people cannot possibly understand the various treatment options. These forms, like many such documents, tend to be written by committees, far from the realities and uncertainties of clinical medicine. Can we make this any easier? In the US, advance directives have been part of the medical landscape for many years, so doctors there have had some time to work on these issues. Angelo Volandes, a physician at the Massachusetts General Hospital in Boston founded Advance Care Planning (ACP) Decisions to assist dying patients to choose the care they want. Volandes has made simple videos, free of medical jargon, which explain the types of care available to dying patients. These videos are short and can be watched on a laptop or iPad. Volandes spoke to the Sunday Times:
Patients don’t understand what they might be in for. They’ve seen CPR (Cardio-Pulmonary Resuscitation) on ER and think it always works. In real life it usually doesn’t result in miraculous recovery but guarantees a violent death... Of course people are right to be worried about a doctor pulling the plug on grandma, but it’s a very different issue when it’s grandma saying, ‘don’t put the plug in’.
But it’s not as simple as Dr Volandes suggests. It is interesting, and instructive, to read about the US experience. Doctors there – usually in collusion with families – commonly ignore advance directives. Very often, the slow course of a long illness makes it difficult to know when to invoke the provisions of the directive. When there is any uncertainty, doctors and families generally opt for full intervention.
Intriguingly, decisions about end-of-life care may be influenced by the way the options are presented, or ‘framed’. Using ideas well known to behavioural economists, Dr Scott Halpern of the University of Pennsylvania showed that the ‘default setting’ of advance directive documents strongly influenced patients’ choices. If the default setting was ‘comfort’, patients were more likely to opt for this, whereas if the default setting was full CPR, more chose this. Changing the language from ‘do not resuscitate’ to ‘allow a natural death’ also changed patients’ choices. Halpern calls this ‘nudging’. If I were to choose one core skill for doctors treating the dying and their families, it would be the ability to ‘nudge’ people to make choices that will best help them.
Americans appear to be ambivalent about advance directives. In 2009, when President Obama’s Affordable Care Act proposed that doctors should be paid for having a discussion about end-of-life care with their patients, Sarah Palin and others claimed that this would introduce ‘death panels’. Although the accusation was absurd, the proposal was dropped.
Advance directives perpetuate an illusion that we can control, in minute detail, our treatment of an unpredictable illness at some unknown time in the future. This ignores the contingent nature of life and death. Nevertheless, many doctors, including Atul Gawande, are enthusiastic supporters of advance directives. They point to the studies which show that employment of these directives dramatically reduces admission of nursing-home patients to acute hospitals at the end of life. Enthusiasm for advance directives, along with the campaign for assisted suicide, is fuelled by the perception that old people need protection from modern medicine. Even if this is only partly true, it should be a cause of collective shame. We have, as a profession, come to a pretty pass when our patients stop trusting their doctors, and see us as an obstacle to a peaceful death. Perhaps we will have to accept advance directives as a necessary evil, and an admission of our failure to treat the elderly and the dying with compassion and common sense.
DON’T LET ME DIE
The success rate of cardio-pulmonary resuscitation (defined as the resumption of a spontaneous circulation) is 18 per cent; the perception of the general public is that it is closer to 50 per cent. This perception may be due to television: a study published in the New England Journal of Medicine in 1996 analysed the depiction of CPR in two popular medical television dramas – ER and Chicago Hope, and one ‘reality-based’ show, Rescue 911. In the 60 occurrences of CPR in 97 television episodes, 75 per cent of the ‘patients’ were successfully resuscitated.
In the 82 per cent in whom CPR is unsuccessful, death is preceded by a period – usually lasting about twenty minutes – of ‘bagging’ (filling the lungs with air via an endo- tracheal tube using a manually powered ‘bag’) and cardiac massage. Drugs such as adrenaline are injected, sometimes directly into the heart, with a long needle (rather like the one John Travolta uses to revive Uma Thurman in Pulp Fiction). Rib fractures are very common. Doctors do the bagging and cardiac massage in relays. The most senior member of the arrest team eventually calls ‘time’. Remember that most of these resuscitation attempts take place in ge
neral wards, in close proximity to other patients, who will hear everything from the other side of the curtain. Thankfully, most people dying in hospital don’t undergo CPR, but 20 per cent do: so, for one in five people, their last experience on this earth is bloody, violent and futile.
In those 18 per cent in whom CPR is successful, the vast majority spend a prolonged period in intensive care. Many are left with permanent brain damage. I recall the case of the father of a school friend. He had a cardiac arrest at his workplace. The ambulance crew managed to resuscitate him, and he was admitted to the Intensive Care Unit. When he woke up, he was raving. And he stayed raving for the remaining two years of his life.
Twenty years ago, a distant relative of mine, a man in his late sixties, had a coronary angiogram; the purpose of this procedure is to obtain X-rays of the coronary arteries, and it is commonly performed as part of the work-up for bypass surgery. The cardiologist performing the procedure gains access to the vascular system by puncturing the femoral artery in the groin, and through that a catheter is advanced up to the heart. The puncture in my relative’s femoral artery bled profusely the night after the procedure. He bled so much that his heart stopped beating and his brain was deprived of oxygen for many minutes. He was ‘successfully’ resuscitated, and the puncture was repaired. When he woke, he was raving. He survived for another twelve years, raving.
One of our hospital chaplains told me how he was called to give the last rites to a ninety-five-year-old man brought to the emergency room by ambulance. He had dementia, and was a resident of a nursing home twenty miles away. He had become acutely unwell in the nursing home; when he stopped breathing in the ambulance, the paramedics administered CPR, because they were afraid not to. He arrived at the emergency room, a bruised corpse.
The Way We Die Now Page 14