With the End in Mind

by Kathryn Mannix

  Ujjal lived with us for two months. Tabitha developed a local English accent and demonstrated enormous promise as a future gymnast over that period: all the furniture in the room required repair or replacement after her departure.

  Ujjal’s cancer eventually obstructed his kidneys, and he became comatose over a few days before dying very quietly while Tabitha was running and laughing in the garden outside his room.

  She and her mother returned to the Netherlands.

  We don’t know whether Tabitha is still bilingual.

  This possibility of unintended pressure is a dilemma currently confronting healthcare systems across the world. Once the euthanasia genie is out of the bottle, you must be careful what you wish for.

  Travel Plans

  It seems that the sense of approaching departure is apparent to many people as their illness progresses. Sometimes the metaphor of leave-taking is the only way the approach of death can be discussed. Over the years I have met people who perplexedly search for their passports, ask their baffled loved ones to check their tickets, put random items into bags for the journey. I have learned not to confront the ‘confusion’, but to join in the conversation where the patient is, and through it to reach, discuss and comfort their sense of imminent departure.

  Sanjeev and Arya have been married for ‘sixty-odd’ years, he announces, adding, ‘I’d better get that number right when she’s here!’ Sanjeev has heart failure. After a healthy old age, he had a heart attack last year at the age of eighty-eight, and his weakened heart cannot now support any vigorous activity, for example talking at the same time as walking. He has been admitted to hospital from the cardiology clinic, because his blood tests show that his kidneys are starting to fail. Bed rest and adjustment of his medications are required.

  Arya brings food from home. The delicious smell wafts along the ward, and the other patients in Sanjeev’s bay ask if they can give her an order. Arya smiles and tells them she will bring them all a snack tomorrow.

  After dark, it’s a busy night in that small bay. One of the men has a cardiac arrest. His heart monitor sounds an alarm and the ward team, along with a doctor from the CCU (coronary care unit), spring into action. There is commotion, clipped medical phrases, running feet, the ‘Thud!’ of a defibrillator. The heart restarts; the patient is wheeled off to CCU on his bed, leaving a space in the six-bedded bay. The other patients are wide awake, shaken.

  ‘Like telly,’ observes one of them.

  ‘I’m glad I’m going home tomorrow,’ says another.

  ‘Indeed,’ agrees Sanjeev. ‘I also will be going home tomorrow.’ The other men are surprised; they were anticipating several days of tasty snacks from Arya while Sanjeev was on bed rest.

  ‘Where’s home for you then, mate?’ asks a stocky, tattooed man who is having his high blood pressure treated.

  Sanjeev considers this question. ‘It’s near Delhi,’ he says, naming a small town in which he spent his childhood before coming to Britain for his education. ‘Perhaps you know it?’ The tattooed man says he’s never been to India. Sanjeev looks perplexed. ‘It’s only round the corner. Are you silly?’

  A nurse brings in a tray of milky drinks and says, ‘OK, chaps, your pal is doing fine. Sorry we woke you with all the clamour. Who’d like a warm drink?’ Three of the men ask for malted milk, one for tea, and Sanjeev for chai. He is put out when the nurse says there is no chai.

  ‘No chai!’ he grumbles. ‘What kind of hotel is this?’ He hauls his swollen legs over the edge of his bed and stands up. He asks the nurse, ‘Madam, if you would kindly reach my suitcase for me,’ and begins to retrieve his clothes from his bedside locker. Then he sits down and begins to search through his wallet; dissatisfied, he rummages in the locker drawer, then in his toilet bag, then back to his wallet.

  ‘Sanjeev, are you looking for something?’ asks the nurse.

  Sanjeev looks at her anxiously. ‘I seem to have mislaid my tickets, madam, although I can assure you that they are all in order. Do you need to see them now, or might I show them later?’

  The nurse asks him to get back into bed, and he asks her what time the train will arrive in Delhi. And suddenly she understands.

  ‘We won’t arrive until morning, sir,’ she says, realising that she has somehow become transformed into a railway official in his mind. ‘We’re asking all passengers to make themselves comfortable, and I will call you in plenty of time. Now, can I assist you back to bed?’

  Sanjeev agrees politely, and she helps him to climb back onto his bed (‘High bunks in here!’ he grumbles) and settles him down. She asks if anyone will be meeting him off the train.

  ‘My parents,’ Sanjeev smiles. ‘It’s been so long since I saw them.’

  The nurse is an experienced night-shift worker. She leaves a dim light on by Sanjeev’s bed, and draws his curtain slightly to screen it from the other ‘passengers’, because she knows that darkness compounds disorientation, and that being able to see familiar objects is calming. Then she returns to the nurses’ station and calls the doctor. She reports that her patient is delirious and disorientated in time and place, and believes he is in India, travelling to meet his parents. She asks whether she should call Sanjeev’s wife.

  The doctor is very young. To have a job in this institution, she must be academically very bright. She is in the CCU, where she has just finished stabilising Sanjeev’s erstwhile room-mate.

  ‘Why would we disturb his wife?’ she asks. ‘We need to find out why he’s delirious, and treat him. I’ll come and listen to his chest and take some blood for tests. Please will you repeat his observations while I’m on my way?’

  The nurse goes back to Sanjeev, who is once again fumbling in his wallet for tickets. ‘Please don’t worry about your tickets, sir, I have them safely in my office,’ she says.

  Sanjeev submits to having his temperature, pulse and blood pressure measured, seeming to think this is an extended service on the railway, and then says, ‘Thank you, Mummy.’

  The nurse sits down on the bedside chair, and asks, ‘Do you wish your mummy was here?’ He looks puzzled, so she shows him her uniform, the clip-watch hanging from her dress, the pocket of pens, to help him recognise that she is a nurse. ‘What would you say to your mummy if she was here?’ she asks him gently, and Sanjeev tells her, ‘I have missed you, Mummy. I am so glad to be coming home.’

  The nurse squeezes his hand. ‘And she must miss you, Sanjeev. She will be so glad to see you.’

  Sanjeev closes his eyes and dozes off. The nurse returns to her station and phones Arya, asking her to come to the hospital as soon as she can.

  The young doctor arrives, looking flustered from her busy shift. The nurse produces Sanjeev’s case notes, summarises his day from admission to becoming disoriented, and reports that his temperature, pulse and blood pressure are all normal. The doctor goes to examine Sanjeev, and the nurse advises, ‘If he believes you’re railway staff, just tell him you’re the railway doctor and that it’s all part of a new service.’ The doctor stares at her blankly, and the nurse goes on, ‘If you challenge his perception of reality he’ll simply become upset and anxious. Let’s keep him calm. When his wife arrives, we can try to reorientate him.’

  ‘But why have you called his wife?’ asks the doctor.

  ‘Because he thinks he’s on his way home to his mother,’ says the nurse’s Voice of Wisdom, ‘and in my clinical experience, that’s a sign that he may be dying. I’d rather call his wife for a false alarm than not heed his message.’

  The doctor goes off to assess Sanjeev while the nurse goes back to her rounds of observations, answering patient buzzers and giving out medications. They meet back at the nurses’ station, where the doctor is labelling the vials of blood she has just taken from Sanjeev and calling the labs to ask for urgent tests. ‘His chest is clear,’ she says, ‘but he has an odd tremor and his ECG changes make me wonder whether his kidneys are deteriorating. What’s his resuscitation status?’

  The nu
rse reports that Sanjeev and his wife are both aware that Sanjeev’s heart is damaged beyond repair, and that if it should fail, or stop beating, resuscitation would not succeed. ‘The consultant has discussed it, and they agree with him. There’s a Do Not Attempt Cardio-Pulmonary Resuscitation order in his notes,’ the nurse reports. The case notes record the important conversation between the consultant and the couple, when he explained to them that CPR could not succeed and that a DNACPR order would protect Sanjeev from ‘unhelpful interference’ if his heart became too weak to support him. The conversation took place about six months ago, and is recorded in the consultant’s bold, pointy handwriting. He has helpfully included the exact words he used to explain the situation, and the couple’s response: ‘Patient and wife understand. They would not wish CPR to be his terminal event. They are keen to avoid “medical interference”. DNACPR form completed. GP notified.’

  The ward doorbell sounds, and Arya arrives. The nurse greets her and explains that Sanjeev is muddled and thinks he is on a train to Delhi. She hopes that seeing Arya will help him to feel calm and safe. ‘He thinks he’s going to meet his parents,’ she says, ‘and he mistook me for his mother. Would you like to come and see him? The doctor has examined him and is sending off some blood tests, and she’ll let you know as soon as we get some results.’

  Arya follows the nurse into the dimly lit bay, and approaches her husband.

  ‘Arya!’ He recognises her immediately. ‘What are you doing here? Who is looking after our babies?’

  Arya is taken aback, but the nurse is ready. ‘The babies are with an expert nanny, Sanjeev, and Arya has explained exactly how they must be cared for. Now, can I get you both a cup of tea? I must apologise that there is no chai.’

  By now, dawn is breaking. Sanjeev points to the window and says, ‘We are nearly there, Arya. Hurry, we must dress the babies and get ready to show them to Mummy.’ He starts to climb out of his bed. The doctor appears at this moment, to tell Sanjeev and Arya that she has the lab results and wishes to discuss them. She tries to persuade Sanjeev to get back into bed, but he is adamant that he must wash, dress and prepare his paperwork for arrival in Delhi. The doctor returns to the nurses’ station for back-up.

  Backup, it transpires, is available in the form of the new shift of nurses, just getting their handover from the night staff. I am there too, having come in early to review a patient’s pain before I go to a meeting. The night nurse briefly summarises Sanjeev’s confusion journey: triggered by the sudden awakening during the cardiac arrest event, via briefly thinking that the ward was a hotel, to his fixed belief that he is on the train home to his parents in Delhi, parents who have been dead for forty years. The doctor adds that Sanjeev’s blood tests show that his kidneys have failed completely, so he has rising potassium levels in his blood that put him at risk of abnormal heart rhythms, even cardiac arrest. She suggests that he should have treatment to lower the potassium, and that he may need kidney dialysis. His delirium is related to the speed at which his kidneys have failed.

  I ask whether Sanjeev would want dialysis. The young doctor looks perplexed. ‘He needs dialysis,’ she says.

  I agree that if Sanjeev is to survive long-term, he probably needs dialysis. ‘But is that what he wants?’ I ask. ‘He has already told his consultant that he doesn’t want to be messed around, that he understands that he will eventually die from his heart failure. Perhaps this is the way his dying will happen–from kidney failure.’ The young doctor blinks tiredly back at me, and I say, ‘You need a coffee; Sanjeev needs a decision. Shall we have a cuppa with Sanjeev and his wife, and see what’s the best thing to do?’

  The weary doctor has another hour before her shift will end, and the nurses can see that she is near the end of her tether. This is a big decision, a medical decision, in which the patient’s views must be considered. But can Sanjeev really express a considered opinion while he believes he is on a train in another continent? I have participated in many, many of these conversations, and I explain that we must explore the patient’s views as far as we can, then we will call Sanjeev’s consultant to make the medical decision.

  The doctor and I take our cups of coffee to Sanjeev’s bedside. The young doctor is concerned that this will look unprofessional, and I reassure her that, on the contrary, it gives the message that we are prepared to sit and spend time with the couple, and in his confusion Sanjeev needs such ‘body language’ signals to feel secure. I introduce myself, and then ask Sanjeev how things are going.

  ‘I need to get ready. We are nearly there,’ he says. I reply that I understand that all his paperwork is in order, and that I can help Arya to pack his bag if there is any need to hurry. I ask him to tell me about his heart condition. ‘Oh, my old ticker. It gives me no trouble.’ Arya looks startled, but he continues, ‘It’s getting old, like me. I can’t hurry and my legs swell up, but it gives me no pain. Just tiredness. I am getting so tired…’ It is the young doctor’s turn to look surprised; despite being on an Indian train, Sanjeev is able to discuss his heart condition.

  ‘What will happen to your heart in the future?’ I ask him.

  Sanjeev looks at Arya, and says, ‘Well, it will be the death of me, certainly. We both know this. We both know that the resuscitation team cannot save me. This I must tell my parents. I am taking Arya to tell them.’

  ‘If there were treatments that might help you to live longer, Sanjeev, would you want to do that?’ I ask.

  Sanjeev considers. He looks at Arya again. He says, ‘I have had a very long life. I have done very many things. I have been most fortunate. I have had a very happy marriage and two sons.’ He smiles at Arya. ‘But life is not everything if weakness overtakes you. I am overtaken by weakness; I will never be strong again. What use is it to prolong living in a useless way? Is there a treatment to make me strong? No. Is there a treatment to make me young? No. Can you make me fit and strong? No, you cannot, and this we must accept. So living longer is not a good thing if I live like an invalid.’

  The young doctor sips her coffee, pensive and pale. When Sanjeev takes a sip of his tea, the doctor looks concerned and whispers, ‘Fluid balance.’ Nodding to her, to show that I have heard her, I ask Arya, ‘Is this something you’ve discussed before? Do you talk about these things together?’

  ‘We talked a lot after the heart consultant, Dr Abel, told us about the resuscitation problem,’ Arya replies, keeping her gaze on Sanjeev as she speaks, ‘and we both agree this. Being alive but not living well, that is not good. We were very grateful that Dr Abel was so honest with us. Sanjeev explained it to our sons, and we have arranged everything. When Sanjeev dies…’ she swallows, and continues. ‘When that happens, I will go to live with our younger son. He is near. I will feel near Sanjeev until it is my turn.’

  There is a pause. Drinks are sipped. There is a sense of togetherness around the bed. Sounds of morning activity begin in the bay: footsteps, medicines trolley, names checked and drugs administered, the hum of the blood pressure monitor.

  ‘Sanjeev, Arya, the problem we have today is this–’ I begin.

  ‘Have we missed the station?!’ asks Sanjeev, sharply. ‘Where are my tickets?’

  ‘No, there’s still quite a journey,’ I say. ‘It’s a medical problem, not a travel problem. Can I ask you about this medical problem?’

  ‘Indeed,’ says Sanjeev.

  ‘Well,’ I say, ‘it seems that your heart condition has now caused your kidneys to stop working properly. That might be quite serious.’ I pause. Arya nods.

  Sanjeev asks, ‘How serious?’

  ‘Serious enough to shorten your life,’ I say, deliberately calmly and clearly.

  ‘How short?’ he asks. ‘Where are my tickets?’

  ‘Perhaps as short as days with no treatment,’ I say.

  He looks at me, looks at Arya, and then back at me. ‘Well, then,’ he announces, ‘we must get home from India as soon as possible.’

  ‘Do you mean go home for treatment?’ I
ask.

  He raises his hand, shakes his head, and says, ‘No, no, no, no. Arya and I have discussed this many times. I wish to die in our own home. No more hospital carry-on. No machines. No “beep-beep” nonsense. At home. With my parents. As we planned.’

  ‘Parents?’ I say, and he considers before saying, ‘Are you trying to catch me out? I am in my eighties. My parents were cremated in India many years ago. I am going to pay my respects.’

  ‘I’m sorry, Sanjeev. Perhaps I misheard you. I thought you said you wanted to be with your parents when you die.’

  ‘Silly-silly,’ he pats my hand. ‘I am always with my parents, I carry them in my heart. I want to be at home with my family. Look at my lovely wife, doctor. She knows how to care for me. Send me home to her.’

  I tell him that I will do my best, then the young doctor and I withdraw to call Sanjeev’s consultant. He knows the couple well, and asks me whether I think Sanjeev has the capacity to make a decision about whether or not to have further treatment. I tell him that, despite his muddle about place and time, he is able to express very clearly his views about avoiding a ‘medically complicated’ death, views that are aligned with all the conversations his consultant has previously had with him.

  Dr Abel says that haemodialysis (the filtering and purification of the blood by a machine) is an invasive procedure, and that Sanjeev may no longer be fit enough to survive it. We discuss the best way to ensure that he will not be troubled by symptoms like nausea and hiccups caused by his kidney failure; I assure Dr Abel that I can arrange for the community palliative care team to visit Sanjeev at home later today if we can arrange his discharge from hospital this morning. It is agreed. Sanjeev’s son is called to provide transport; the weary junior doctor is sent home to sleep.

  Sanjeev supervises his packing, and Arya collects his medicines from the hospital pharmacy. Dr Abel comes to the ward and asks him how he is. Sanjeev begins to look for his tickets once more, and the consultant says that tickets are not required, he is an honoured guest. Sanjeev beams at the nurses as a porter wheels him along the ward on his way to the car park.