With the End in Mind

by Kathryn Mannix

  ‘Yes, I’d like a chance to catch up with you,’ I reply, and together we walk to the visitors’ kitchen to make a cup of tea to take with us to the interview room.

  In the kitchen, the comedian is holding court. Ama’s husband and the husband of another patient are laughing at some comment he has just made, and then they all agree to step outside for a smoke. I make tea for Nana’s son while he watches the smoker posse’s retreating backs.

  ‘Did you want to join them?’ I ask. ‘I’ll be here for a while if you’d like a cigarette first.’ He shakes his head glumly. It is as though he knows what I am about to say.

  In the interview room, we sit and look at each other over the rims of our brightly coloured cups. This man, now in his seventies, is still being protected and cherished by his dying mother. He has a lifetime of coping skills to call upon, yet she has fiercely resisted letting him know how serious her illness is. Only today were we able to gain her permission to talk frankly with her family, partly to help her be less exhausted by their enthusiasm to entertain her. I wonder where to start.

  ‘You wanted to ask something?’ I say.

  He puts his cup down. ‘Yeah. I want to ask you if she’s dying,’ he says, somewhat unexpectedly. Gosh, he must have noticed more than we thought.

  ‘I wonder what makes you ask that,’ I begin, to feel my way into the discussion.

  ‘Bridget did.’

  ‘Bridget? How?’

  ‘Mam was asleep when I arrived this evening, so I went to talk to Bridget for a while. She asked me whether I’d noticed that Mam has less energy these days, and I hadn’t really. But Bridget told me that’s the pattern she sees. Less energy. Then more sleepy. Then just unconscious, before people die. She’s seen it so many times, and she knows Mam from before. Bridget was asking me whether the kids are ready…’ he trails off miserably, and looks at his hands.

  Wow. The network is in action. Bridget has already done my job for me.

  ‘Well, that’s what I wanted to talk to you about,’ I say. ‘What do you make of what Bridget said?’

  ‘Dunno, really. Like, I’ve never seen anyone die. I dunno what to expect. But she definitely isn’t as good as she was, is she? And her face is getting more droopy, and she can’t stand up proper, and her arm’s all stiff and twisted. And she can’t say her words proper either. I guess it all adds up…’ He swallows, rubs his hands together, looks up at me with pleading eyes.

  I can’t make this be a happy ending for him. He wants me to tell him he’s wrong. But what he’s noticing are the first steps on her journey.

  ‘You’re right,’ I say, and he looks away, blinking. ‘If you look back, how do you think she’s doing now compared with a month ago?’

  ‘Definitely worse now.’

  ‘How about a week ago?’

  He shakes his head as he says, ‘Yeah, even a week ago she was better than this. I dunno why I never put it together before.’

  ‘It’s hard when it’s someone you love so much. You see the person, more than what they can or can’t do,’ I say, and he rubs his eyes.

  There is a silence while he absorbs the reality. Then he pushes his hands against his knees, straightens his back and asks, ‘So, how long has she got?’

  I hate this question. It’s almost impossible to answer, yet people ask as though it’s a calculation of change from a pound. It’s not a number–it’s a direction of travel, a movement over time, a tiptoe journey towards a tipping point. I give my most honest, most direct answer: I don’t know exactly. But I can tell you how I estimate, and then we can guesstimate together.

  I remember the leader telling Sabine about dying, and how incredulous I was as he described the process. Barely two years later, here I am using my own adapted version of those words, now with the confidence that comes from frequent practice, tempered by the caution of knowing that, for this loving son, this is a first time, and I must go gently. I must match his pace.

  Together, we review the changes he has noticed: the loss of movement, the loss of language. Then we talk about her energy levels, and how much more tired she is now than only a couple of weeks ago. Some of her tiredness may be temporary and related to her radiotherapy, but there is a clear, overarching change, and it is recognisable week by week. So we are looking at a life expectancy of weeks. Maybe enough weeks to make a month or two; not enough to reach the autumn.

  He turns the teacup round and round in his hands, staring through it into a space in his mind, beginning to feel a space in his life. He is over seventy, and his mum is dying. He could be a teenager–he does not know how to bear this loss. What can I offer? I feel the inadequacy of my youth, not yet thirty and advising a man older than my father. How can I offer support? He thanks me and says he will go back to see if his mum is awake. I return to the office. The Australians have arrived. The chef has gone to make their meal. I have more bad news to break.

  The smoking posse is back in the kitchen when I arrive to make a tray of beverages for the Australians. The comedian fetches a milk jug for me, while Ama’s husband sympathises that I am working so late. Nana’s son appears with swollen eyes and an empty cup, and the comedian pats his shoulder in solidarity. There is a sense of fellowship amongst this disparate little community of people, all assembled here by the irresistible summons at life’s end. And then the comedian makes a penetrating comment.

  ‘Last time I was in a gang like this’–he waves his hand around the room to take in his fellow visitors–‘was in the maternity hospital. A load of dads-to-be and anxious mothers, all waiting for their lasses to give birth. All comparing notes–Have her waters broken? How often are the contractions? How dilated? Is the baby’s head coming down? Nipping out for a sly fag, grabbing a cuppa while the poor wife is pushing and panting… And all waiting for the same outcome. All watching the same process, at different stages, in different rooms. And this is the same, innit? We’re all comparing progress, waiting for the same thing. And then we’ll go home, and never forget you people’–he makes eye contact with me, rather than the rest of his audience, who are nodding at him–‘and you will just change the beds and get ready for the next family.’

  The posse members drift out of the kitchen towards their various loved ones, and I am left alone to reflect on the comedian’s fascinating declaration. I can hear him repeating it as he stumps along the corridor, paraphrasing and refining as he turns it over and polishes it into a routine he could use on stage. He has hit an essential truth. We know what the processes of both birth and death look like when they are proceeding smoothly–clear phases, predictable progression, needing companionship and encouragement but not interference: almost like watching the tide advancing up the beach. We also know when extra action is needed–when should the midwife ask the mother to push, or pant and wait? When should the process have medical interference? Likewise, our skilled and experienced nurses know when to summon a family, when to offer pain relief or treat anxiety, when simply to reassure that all is normal, that the dying is progressing as it should.

  By the time I have spoken to the Australians, the sun has set and the Japanese garden is in darkness. A prowling cat on the garden wall is silhouetted against the purple sky. I walk along the corridor, now dimly lit by the nightlights, and past the ladies’ bay, where a single reading lamp pierces the shadows. Bathed in the circle of light is the golden bowl and the rude amaryllis, but tonight its unseemly terminal bud has erupted into an effervescent scarlet bloom worthy of a Japanese silk painting. The flower has been born, quietly and while no one was watching, a force of nature reaching its inevitable conclusion, without help or company.

  This image hovers before my eyes as I leave the building.

  This ‘family’s eye view’ of the parallel experiences at both ends of life was a great gift that has resonated with me repeatedly throughout my career, and I treasure it still. At birth and at death, we are privileged to accompany people through moments of enormous meaning and power; moments to be remembered an
d retold as family legends and, if we get the care right, to reassure and encourage future generations as they face these great events themselves.

  Please Release Me–A Side

  When does a treatment that was begun to save a life become an interference that is simply prolonging death? Can a life-sustaining treatment, begun in hope, turn into a trap that binds a failing body to existence? And if so, what are the ‘rules’ about stopping treatment that no longer helps the person to live well?

  There are so many roles in medicine that there is a home for every interest. Indeed, at medical school, which is usually a five-year university course in the UK, we play at predicting where our fellows will end up, and follow each other’s professional development with interest, amusement, or even envy. My own class, which holds regular reunion weekends every five years or so, has produced a smattering of international superstars, some splendid research scientists, a galaxy of dedicated clinicians in general practice and in a variety of hospital specialties, plus several priests, a mountaineer, a philosopher and a forestry expert. We spotted the psychiatrists during our first year: eclectic or flamboyant taste in clothing, a tendency to introspection, and possessed of a vocabulary that always made conversations fizz. The surgeons were starting to declare themselves by halfway through our training: decisive and self-assured, prone to defending sometimes indefensible opinions, and often living among dismantled motor vehicles or domestic appliances that they enjoyed reassembling with variable success.

  And then there are the anaesthetists. The people who can hold their nerve when the stakes are high. They often have terrifying hobbies: hang-gliding, motorbike racing, deep-sea diving. They like ‘kit’. They like risk. And they often prefer their own company, in thoughtful silence or intense concentration. At work, some prefer their patients to be asleep, as in an operating theatre or an intensive care unit; some love the thrill of high-risk surgery, when an anaesthetist with a steady nerve is an essential member of the surgical team working deep inside a patient’s chest, abdomen or brain; some use their intricate knowledge of nerve pathways to gravitate towards pain management; and others work in applying their knowledge of supporting patients’ breathing during operations or in ICU to those people living at home whose lives can only be maintained by relying, either partly or entirely, on a ventilator to support their breathing. This is known as home ventilation.

  My anaesthetist colleague from the home ventilation team asked to talk to me. This was somewhat unusual. A man of few words but enormous passion, he had not been keen to embrace the concept of palliative care, so I was intrigued about what he might want to discuss. He offered to make me coffee when I arrived at his office, so matters were clearly serious. He looked as though he would rather be a million miles away, yet he took a deep breath, and told me about his patient, Max.

  The story went back ten years to when Max, then a wealthy fifty-six-year-old retired human rights lawyer, developed a swallowing problem. This very quickly turned into a life-threatening chest infection, as food was mis-swallowed into his lungs. He was admitted to hospital almost dead, and rapidly transferred to the ICU, where his breathing was supported by a ventilator while high-dose antibiotics were given to clear his chest, which they did most effectively.

  But that was only the beginning of Max’s problems. As the ICU staff began to wind down his ventilator to prepare him for recovery, he failed to breathe properly without it. Further tests showed that the reason for his swallowing problems was previously undiagnosed motor neurone disease, which had paralysed his throat muscles. It had also weakened his diaphragm, that mighty, dome-shaped muscle beneath our lungs that provides much of the bellows action for breathing.

  Because the diagnosis of MND was only made after he was already using a ventilator, Max did not have the opportunity to discuss with his doctors whether he would choose to be ventilated–usually a decision reached after much careful consideration by each patient affected. Instead, he was in a position of having to choose whether to continue with ventilation, with a smaller machine that could be used at home and carried about with him, or to discontinue and die because his respiratory muscles would not be strong enough to support him.

  One of those people who has a long MND history, I thought, thinking of Stephen Hawking. I hope he has a supportive family…

  In fact, Max had been widowed in his forties and he lived alone in an elegant, isolated Georgian farmhouse. He volunteered for the Citizens Advice Bureau and his local refugee centre. His passion for justice remained undimmed, and this guided him through the crisis at diagnosis. He didn’t have time to die–he had several refugee cases in mid-tribunal, and he was writing his memoirs. Instead, he accepted that he would need to live with a ventilator, and quickly decided that he could live at home, with some regular reviews by the home ventilation team, and some paid help.

  Over the next ten years Max’s MND had progressed very slowly, and only recently had his limb muscles become weak, rendering him bedbound and frustrated. Throughout all this time he had been fed via a PEG tube, a small plastic tube permanently inserted through his abdominal wall, down which liquid food was dripped directly into his stomach overnight using a little pump. He was well-nourished, he was awake and alert, and until a few weeks previously he was driving his car, managing his ventilator, typing his refugee asylum applications and running his own home. Now he is confined to his bed or a reclining chair, with twenty-four-hour nursing support at home.

  Ah, it’s a hospice referral… No, it’s not.

  My colleague explains that Max now considers that his useful life is over. He has no partner or children to live for, and he can no longer type, so he cannot work, and nor can he communicate using the ‘lightwriter’ machine that has served him in place of speech so well for a decade. So he wishes to discontinue using his ventilator. He perceives, with a lawyer’s clarity, that he has a right to decline treatment, and so he has a right to ask for his ventilator to be discontinued. He cannot do this for himself, because his arms are too weak to manage the switches. Besides, when the machine is switched off, he will experience profound breathlessness before he loses consciousness. He has asked the home ventilation nurse for advice.

  So that’s why I’m here.

  Almost. There’s another part of this story. My colleague has looked after Max throughout those ten years, initially at clinics and later by visiting him at home. They have enjoyed each other’s intellect and humour; they have discussed politics and fine wine. This is no longer simply a doctor–patient relationship–this is a friendship. And my colleague is distressed, both by the discomfort that his patient-friend may have to face, and by his own role in it.

  Here is the challenge of working as a liaison specialist in hospital palliative care. Max will remain the patient of his own GP and of my colleague. I will offer advice and expertise which Max’s medical team will consider. Only if I admit Max to a hospice bed will he become ‘my’ patient, and even then I always liaise carefully with a team that has known a patient well over many years. Despite the fact that this consultation is about Max, it is also about the home ventilation team, who are fond of him. I am being invited to advise on managing Max, but must weigh how I approach that advice with consideration of the other clinicians, those flesh-and-blood people who are so deeply involved in his care. They must have managed ventilator withdrawal many times before, so it is a mark of their personal involvement in Max’s care that they are seeking external advice. This is an honour; it is also a first, and I hope it might create a precedent that will allow palliative care team involvement in the care of other patients who might benefit. So as well as an honour, it is a test.

  First, the ethical considerations. Is withdrawal of treatment that results in Max’s death the same as killing him? Well, if he lived at a time or in a country without access to ventilation, he would have died of his initial chest infection; we would not have said he died of ‘not being ventilated’. If he had exercised his right not to be ventilated when his MN
D made him unable to support himself unaided, we would have said that he was dying of respiratory failure caused by MND. The fact that he has accepted ventilation for ten years does not change the fact that ventilation is an invasive treatment, and that he has a right to decline it at any time and for any reason.

  However, he has recently had a dramatic escalation of the weakness in his arms and legs, that has completely changed his independence and his quality of life. This is a shocking change. Just as he initially came to terms with loss of eating, loss of speech, and the need for a ventilator (a triad that might make anyone feel despondent about their future), and has flourished despite those adversities, might he also now find that he is able to adjust to this new lifestyle? Is he depressed? Is he anxious? Does he feel that he has options? My colleague and I discuss whether Max might waive his right to stop ventilation for a few weeks, to give him a chance to discover whether living like this continues to feel as intolerable as he currently considers it. We agree that it is ethically and legally permissible to stop ventilation, but that we are also ethically obliged to ensure that Max is in the right state of mind to make such an irrevocable decision.

  We also agree that, when and if Max decides to discontinue ventilation, he will need careful management of his breathlessness if he is to die comfortably. Usually, when people die of conditions where their lungs fail supply the amount of air they need, this breathing failure happens gradually. As it does so, the levels of oxygen in the blood drop, reducing the person’s awareness and thinking, and the carbon dioxide levels in their blood rise, causing sleepiness. This subtle change of gas levels dissolved in the blood causes gradual loss of consciousness. It may also cause a sense of ‘air hunger’, or sometimes headaches, that can be managed with low doses of morphine-like drugs and sedatives, so that there is little or no breathlessness as breathing, and life, ebb away naturally.