The Way We Die Now (13 page)

A study published in the
Journal of the American Medical Association
in 2013 found that, in 2009, 33.5 per cent of Medicare beneficiaries died at home, a 10 per cent increase compared to 2000. Forty-two per cent died in hospice care (nearly twice the percentage in 2000), and 24.6 per cent died in hospital (from 32.6 per cent in 2000). It’s not all good news, however:

...the rate of ICU use in the last month of life has increased, with 29.2% of decedents experiencing an ICU in the last months of life in 2009. Another indicator of change in end-of-life medical care is that 11.5% of 2009 decedents had 3 or more hospitalizations in the last 90 days of life. Hospice use increased, but 28.4% of those decedents used a hospice for 3 days or less in 2009. About one-third of these short hospice stays were preceded by an ICU stay in the last month of life.

The dying experienced an average of three ‘transitions’ from one healthcare setting to another in the last 90 days of life: 14 per cent were moved in the last three days of life. All we can conclude from these data is that knowing where a person died tells us very little about the quality of care received by that person. These statistics also reflect, I believe, the phenomenon of what I call the negative currency of responsibility: the less of it you have, the better. One of the main motivators of behaviour of healthcare professionals (particularly doctors) is the evasion of this currency. The burden – our dirty little secret – now so great, is best described by Raymond Tallis’s memorable phrase ‘the unbearable heaviness of responsibility’.

Palliative care uses a different vocabulary to other medical specialties, one that suggests an expanded role beyond mere symptom control. In the past, the specialty has been accused of over-emphasis on symptom control, at the expense of what might be called metaphysical issues. North American palliative care physicians have attempted to quantify these metaphysical issues with the ‘Patient Dignity Inventory’ (PDI), designed to measure sources of ‘dignity-related distress’ among dying patients. This Inventory is designed to form the basis for dignity therapy − encompassing the patient’s life, their achievements, their hopes and their fears. ‘Dignity therapy’, opines Harvey Max Chochinov, a Canadian psychiatrist, ‘should be delivered by a skilled and sensitive clinician who, guided by a core set of questions, maintains sufficient flexibility to follow in the direction of the patient. Using a supportive-expressive approach to the clinical encounter, the personal needs of the patient are paramount to the therapeutic process.’ The Patient Dignity Inventory consists of five factors:

1. Symptom distress (physically distressing symptoms, feeling depressed, anxious, and uncertain, being worried about the future, not being able to think clearly).

2. Existential distress (feeling that how you look has changed, that you are no longer who you were, not feeling worthwhile or valued, not being able to carry out important roles, feeling that life no longer has meaning or purpose, feeling that you are a burden to others).

3. Dependency (not being able to perform the tasks of daily living, not being able to attend to bodily functions, reduced privacy).

4. Peace of mind (feeling you have not made a meaningful contribution, a sense of unfinished business, concerns regarding spiritual life).

5. Social support (not feeling supported by friends or family, not feeling supported by health care providers, not being treated with respect).

A pretty tough list, I thought. Most conversations I have had with the dying do not get past factor one, symptom distress. In fact, I’m lucky if I get that far with most patients. And I’m not sure, if I were the dying patient, that I would want to discuss most of these issues with a physician, no matter how ‘skilled and sensitive’ the inquisitor. I am not at all convinced that these are problems a doctor should be addressing: is it really any business of mine if my patient has worries about his legacy, or his relationship with God? These are dilemmas that are more appropriately discussed with family, close friends and (perhaps) a chaplain, without the intervention of a ‘skilful and sensitive’ medical facilitator. As early as the mid-1970s, Philippe Ariès feared that the (then) new hospice movement was taking over roles and functions which up until then had been the province of family and priest.

Dignity therapy is closely related to ‘narrative medicine’, another American movement. The term ‘narrative medicine’ was coined by Rita Charon, Professor of Clinical Medicine at Columbia University Medical Center, New York. The programme in Narrative Medicine there has as its mission statement: ‘Narrative medicine fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret and be moved by the stories of illness.’

Like the narrative medicine movement, palliative care sometimes seems to speak in a different language, one that can be marked, as I have said, by a kind of cloying earnestness, or ‘chronic niceness’ as the hospital chaplain Peter Speck called it. A paper by M. K. Kearney and others, ‘Self-care of Physicians Caring for Patients at the End of Life’, recommends some self-awareness practices in the workplace, to prevent professional burnout: ‘As I wash my hands, I say to myself, “May the universal life-force enable me to treat my patients and colleagues with compassion, patience, and respect”... Take half a minute of silence or take turns to choose and read a poem at the beginning of weekly interdisciplinary team meetings.’

Ivan Illich raged against the medicalization of death; he would not be surprised, I think, by the emergence of dignity therapy and narrative medicine, with doctors taking on a quasi-sacerdotal role and assuming concerns for matters which, in the past, were regarded as ‘spiritual’, not ‘medical’. Tellingly, Illich called modern scientific medicine a ‘monolithic world religion’.

‘Breaking bad news’ is now regarded as a special skill, best practised by palliative care specialists. The paradox in this assertion is that, in order for patients to engage with a palliative care specialist, they need to already know that they have a lethal disease. As I explained earlier, if I arrange for an oncologist to see one of my patients, the onus is on me to tell the patient that he or she has cancer. As I have argued, there is no good way of breaking bad news, but there are many bad ways to do it. My own practice, the result of many years of trial and error, is this: get everyone – patient, family, nurses – together. Try to find a quiet room, if you can. ‘Ambience’, a colleague once remarked, ‘is more important than words.’ Families frequently express disappointment with this arrangement: often, they want me to give them the complete and unedited information first, and then a much-diluted (and censored) version to the patient. Not uncommonly, the various relatives ask to be talked to individually, and in detail. It is infinitely preferable for all concerned to hear the same information: this approach dramatically reduces the potential for misinformation, confusion and conflict. News, it has been said, is neither good nor bad: it depends on the perspective of the recipient. For example, a very sick person might regard a short prognosis as ‘good’ news – the end is in sight. ‘Bad’ news is often swiftly forgotten, or denied. I have several patients who, following the Difficult Conversation, talk to me the next day in a manner which suggests the conversation never took place.

Atul Gawande interviewed Dr Susan Block, a palliative care specialist at his (Gawande’s) own hospital, the Brigham and Women’s in Boston: ‘Block is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and families. “You have to understand”, Block told me, “A family meeting is a
procedure
[my italics], and it requires no less skill than performing an operation.”’ Apart from the self-regard of this assertion, it is indicative of a rather worrying trend: namely, the notion that palliative care specialists such as Block are the most skilled and best trained to have the Difficult Conversation. I do not believe that doctors can be taught to do this. There are as many different Difficult Conversations as there are patients. It is a private mystery that only many years of practice teaches.

I noticed the same phenomenon in a 2009 article in the
New York Times
about palliative care. The acknowledged star of the article is an Irish palliative care specialist, Sean O’Mahony. The author of the piece, the rather splendidly named Anemona Hartocollis, was clearly quite taken by O’Mahony: ‘Dr O’Mahony favors crisp button-down shirts, but no white coat. His bedside manner ranges from gentle amusement to studied neutrality; he eerily resembles the un-emotive Steve McQueen of
Bullit
[sic].’ She goes on to describe an encounter with a cancer patient:

Deborah Migliore was pushed into a small conference room in a wheelchair, looking kittenish in red and white pajamas and big gold hoop earrings. Her weight was down to about 90 pounds, from 116, her face gaunt, her sad eyes droopier than ever.

Dr Sean O’Mahony had been called in to tell her the bad news: she was sicker than she realized, and the prognosis did not look good...

Part psychoanalyst, part detective, Dr O’Mahony had to listen to the cues and decide what to do next.

Most doctors do not excel at delivering bad news, decades of studies show, if only because it goes against their training to save lives, not end them. But Dr O’Mahony, who works at Montefiore Medical Center in the Bronx, belongs to a class of doctors, known as palliative care specialists, who have made death their life’s work. They study how to deliver bad news, and they do it again and again. They know secrets like who, as a rule, takes it better. They know who is more likely to suffer silently, and when is the best time to suggest a do-not-resuscitate order.

Why, I wonder, did Deborah Migliore’s oncologist delegate the unpleasant task of breaking the bad news to a palliative care specialist, even one as skilled and charismatic as Sean O’Mahony? It strikes me as an extraordinary dereliction of duty to delegate this difficult, and sometimes unpleasant, task, to a doctor who may hitherto have had nothing to do with the patient. I suspect this happens because American oncologists are expected by their patients to be relentlessly up-beat and optimistic. How wonderfully, and typically, American – to delegate the unpleasant duty of breaking bad news to another physician, skilled in Difficult Conversations, a specialist in ‘deathology’.

There is much confusion about syringe-drivers. Families of dying patients commonly view the setting up of the ‘black box’ as a prelude to imminent death. A syringe-driver is simply a means of delivering medication, nothing more. Typically, a painkiller (usually morphine), a sedative and a drug to reduce excessive secretions are given in combination. It does not hasten death; it does not mean that the doctors have ‘given up’. Tony O’Brien recalled a relative who made this Freudian slip: ‘Doctor, are you going to start the
gun
– I mean
driver
?’

I do not blame relatives for thinking like this: patients on a syringe-driver rarely live beyond forty-eight hours, even if the driver does not actually hasten death. The period after its setting up is rather strange: the patient usually attains a calmness and peace, drifting in and out of consciousness. Families usually maintain an around-the-clock vigil. ‘Agony’ is now a word used to describe the emotions of football fans whose team has lost a cup final in extra time, or the physical discomfort associated with certain types of dental treatment. It used to mean the final stages of a difficult or painful death. Geoffrey Gorer used the word in its original meaning: ‘Questioning my old acquaintances, I cannot find one over the age of sixty who did not witness the agony of at least one near relative; I do not think I know a single person under the age of thirty who has had a similar experience.’ Doctors still use the word ‘agonal’ to describe the irregular and laboured breathing of those nearing death: this phenomenon, as mentioned earlier, is also called Cheyne-Stokes respiration. Old-fashioned Christians contemplate the Agony of the Cross; indeed, the final agony of ordinary people was once thought to be mysterious, grand and awesome. The syringe-driver allows for a softer, less frightening, final agony, or abolishes it completely.

Medical education is still almost exclusively focused on diagnosis and treatment, and not enough on ‘outcomes’ – the results of treatment. To take an example from my line of work, patients admitted to hospital with liver failure have a high mortality. Yet the textbooks of liver disease have little to say about the complex emotional and ethical difficulties encountered when these (mainly young) patients are dying. The books and journals seem almost afraid to tackle such issues, as if to do so would be an admission of failure.

Care of the dying needs to return to the core of what doctors do, and should not become the exclusive preserve of palliative care specialists, no matter how caring, intuitive and charismatic they may be. And this care should be practical, delivered by a doctor who knows the patient. The dying need more than well-intentioned, unfocused sympathy. Dying from liver disease, for example, can be messy and complex, and there are eventualities and complications (bleeding, fluid collections within the abdomen, and so on) that are best dealt with by a liver specialist. There is some evidence that professional bodies are waking up to this fact: for example, the British Association for the Study of the Liver has admitted that palliative and end-of-life care is one of the greatest unmet needs for patients with liver disease. I welcome, and regularly request, advice from my palliative care colleagues, but I do not do so with the intention of getting rid of my dying patients.

Paradoxically, your patient needs you most when they are dying. Like many other doctors, I have tended in the past to move quickly on from the dying patient on ward rounds, pausing briefly to check with the nurse that they are ‘comfortable’. Studies have shown that when patients are classified as ‘DNACPR’ (Do Not Attempt Cardio-Pulmonary Resuscitation), the frequency of visits from their doctor declines. It is almost as if we are ashamed to acknowledge our ‘failures’. This is, of course, absurd, but it reflects how doctors have been trained, and what we learned from our bosses. And it isn’t just sympathy that the dying need, but also practical things: pain relief, of course, but also relief from itching, nausea, breathlessness and terror. The palliative care specialists are, indeed, expert at symptom relief, but patients tend to trust the doctors they know. When I qualified as a doctor thirty years ago, it was quite common for a patient’s GP to visit him or her in hospital. This is now almost unheard of, which is a shame, for the hospital staff could learn something about the patient from a doctor who has known the individual for many years.