Simply switching a ventilator from ‘on’ to ‘off’ is quite a different proposition. As soon as the ventilator ceases, an alert but paralysed patient will feel an urge to breathe and yet be unable to do so. They will have a sense of suffocating, and this will be terrifying. To prevent both breathlessness and terror, I suggest that we will need to work with Max to establish what dose of sedative allows him to sleep through a short trial of switching off his ventilator, using a painless fingertip probe that can tell us when his oxygen levels have dropped beyond the point that would normally waken someone to fight their breathlessness.
By explaining the plan to Max this week, my colleague can assure him that whilst we will not deny his request to turn off his ventilator, we will give him some time to experience living this new, more restricted life while we experiment to find the right dose of sedative. We can then be sure that, when and if the time comes to turn off the ventilator, he will remain asleep and comfortable as his breathing fails. We can plan a few overnight admissions to hospital, during which we can try a range of sedative drug doses. Once he is fully asleep, we can switch off his ventilator and test his oxygen levels, observing him closely for any signs of distress at the same time. If he wakens or becomes distressed, we will recommence the ventilator immediately, and note that the drug dose was too low. This will help us to choose a better dose next time, until we find the right dose to prevent breathlessness.
Then, if Max is still certain that he wishes to turn off his ventilator, he can choose a date to do so, and my colleague and a home ventilation team nurse will do the honours at his home, as is his wish.
Medical ethics can be an interesting challenge. We are obliged to work within the law at all times, and our patients trust us to do so. There is a clear difference between giving a drug at a dose that will suppress breathing, thus killing the patient (illegal in the UK), and giving the same drug at a dose that will suppress breathlessness, thus allowing the patient to be free from distress while their breathing fails (good clinical practice in any jurisdiction). Max is a lawyer; he will appreciate the nuance, and also the need to define the right doses of the right drugs in advance, both for his own comfort and for the legal circumspection of his medical team.
My colleague’s coffee has gone cold. His shoulders, previously hunched with unhappy anticipation, are relaxed. He smiles, and says, ‘Thanks.’ He shifts in his chair, looking awkward, rubs his beard and continues, ‘That was unexpectedly helpful. I knew the law and the ethics, but now it’s a clear set of options. It was helpful to talk it through.’ I assure him, with relief, that I feel honoured to have been consulted and that I’ll be happy to discuss Max’s care again, because it’s hard when a patient becomes a friend, and we need to look after each other if we are to remain able to help our other patients.
‘I don’t know how you do your job,’ he says as I rise to leave. ‘All that dying all the time.’
I look through the office door to the ICU entrance, where lives are hanging by medically managed threads. I couldn’t do his job either.
I shake my head and smile. We shake hands. We will go on to work together in the future, supporting each other in situations too challenging to imagine today. But today we don’t know that, we only know that we have found common ground and a safe place to talk about one of the toughest parts of our job: making friends with patients who are making friends with death.
Please Release Me–B Side
Many people fear the possibility of unbearable suffering as a consequence of illness or accident. Some states around the world have legalised the practice of euthanasia or of assisted suicide, in the hope that this will both reduce fear of an intolerable future for the many and provide an early death as an alternative to suffering for the few. This is based on humanitarian principles and utilitarian ethics.
And yet, even the most carefully-thought-through changes can have perverse and unintended consequences.
‘They didn’t mean to frighten me. I think they thought it was a comfort. But it was every day, every ward round, they told me that if I want to, I can choose to die…’ Ujjal is explaining why he recently ran away from a hospital in his adopted home town in the Netherlands and returned to live with his mother in England, bringing his toddler and his Dutch wife with him.
Having studied languages at university, Ujjal found work with an oil company based in Rotterdam. As a rising star in the company’s management training programme he had a department of many people to manage by the age of thirty, and when he married a fellow employee there was a wonderful Sikh wedding in the British town where he grew up, at which the newlyweds introduced their Dutch and British families to each other amidst the shared national enthusiasms of good food, good music and an excellent party.
Their daughter, Tabitha, was born eighteen months later. As a grandchild of two nations she was intended to grow up bilingual, so Ujjal spoke to her always in English, whilst her mama always spoke Dutch. When Tabitha was a year old, Ujjal developed abdominal swelling and a change in bowel habit. He booked an appointment with his GP. This was the point at which his nightmare began.
The GP found a large tumour in Ujjal’s rectum, and referred him for treatment. Ujjal’s company medical insurance ensured that he saw the best doctors in the Netherlands. They diagnosed a sarcoma of the rectum, a very rare cancer that can be cured by complete surgical removal, provided it has not already spread. Ujjal’s rectum, lower bowel and bladder were removed. A false bladder was made using a portion of his intestines. He had a bag on his belly to collect his urine and another to collect his faeces. He felt lucky to be alive.
But not for long. The wound in his lower abdomen never fully recovered after his surgery. He developed an oozing sore at one end of it that wept smelly pus. Antibiotics seemed to make no difference. Then he noticed that the same smelly ooze was staining his underwear; somehow, the pus was leaking through a minute crack in the skin behind his scrotum. Further scans, more surgery. A wine-cork-sized tumour in his pelvis was removed, and radiotherapy followed to kill any unseen cells that were left behind. The ooze continued.
Then one day, the smell of the skin ooze changed. There were faeces in the discharge. More scans, more surgery. The lower part of Ujjal’s bowel had shrivelled up in reaction to the radiotherapy, and burst. His pelvis was filled with excrement, germs swarmed into his bloodstream, he had unbearable abdominal pain. He passed out on the ward and woke up in the intensive care unit after further surgery, now with a third bag on his belly to collect discharge from the damaged bowels. But still the ooze continued.
A week after the latest surgery, the softly spoken and very kind professor of surgery came to sit beside Ujjal’s ICU bed. He asked Ujjal how he was feeling, and offered to speak English if Ujjal preferred. They continued in Dutch, although the professor explained medical expressions in English for him. He told Ujjal that although the surgery had cleaned his pelvis and removed the damaged bowel to stop the leak of faeces and germs, he still had some tumour in his pelvis, and that this would continue to grow. At the moment the cancer was hollow, like a tennis ball, and germs were growing inside, making a filling of pus. Every now and then the pressure built up and the pus leaked out, either through his abdominal wound or down through his skin under his bottom. This was very unfortunate, but there was no further surgery that would help. Did he understand?
Ujjal understood. He had cancer, and it could not be cured. But he was alive, and he had a daughter who needed her daddy and a wife who needed her husband. And he needed to go home to spend whatever time he could with them.
The professor nodded. ‘The difficult thing is,’ he said, ‘that the cancer will keep on growing. It will make more pressure, and this will make more pain and more leakage of pus. It will become more smelly, and the skin will become very sore. The wounds will eventually become damaged, and begin to break down. Do you understand?’
Ujjal understood. He was going to become more sore and more smelly. It could start any time. So the
sooner he got home, the better.
The professor looked sad, as though it was he himself who had the pain. He said, very carefully, ‘Many people would not wish to live in that state.’
Ujjal agreed that he did not wish to live in that state: this was not his choice. But if the only way to live was in that state, he wanted to do so at home.
The professor paused before saying, ‘Of course, you do have a choice.’
In what way, Ujjal wondered, could he have any choice.
‘Here in the Netherlands, there is an extra choice for you. If you would not like to live like that, then we have the euthanasia. Do you understand?’
Ujjal did. He understood that he could choose to die now or die later.
The professor nodded. ‘Any time it is too much to bear, you have that choice. Would you like to think about that, and then one of my colleagues can come and talk to you to see what you have decided.’
‘No,’ Ujjal had replied. ‘I don’t need to think about it. I want to go home.’
‘Of course, the nursing care you will need is very intensive, for the wounds and the hygiene,’ said the professor. ‘I am not at all sure that this kind of care can be given at home. I will leave you now to think over our discussion.’ He rose from his chair, beamed his kind smile at Ujjal, and left the ICU.
Ujjal reflected. He thought the professor had managed that difficult topic very well. In his professional role Ujjal trained people to broach difficult topics of conversation, and he gave the prof full marks. He knew now that he could choose to die if living got too tough. He understood how that thought might be a comfort to someone else. But he also knew that his heart lay at home, and that even if he needed to bring his mum from England to help with Tabitha, home was where he wanted to be. Tomorrow he would begin planning his discharge from hospital.
The next day, the nurses came to change the dressings over the scar from the emergency surgery Ujjal could not remember, and to examine the new, pouting lip-like rings of flesh where his damaged bowel now joined the skin on his belly, emptying foul bowel products into plastic bags. The nurses brought a young doctor, a member of the surgery team, who wanted to check how the wounds were healing. She seemed pleased by the pink and fleshy lips of the stomata, and the line of stitches down the wound that stretched from Ujjal’s pubis to the top of his abdomen.
The nurses completed their task and withdrew; the surgeon sat down beside Ujjal. ‘It was a big operation, you know,’ she said, ‘because we needed to clean all the mess inside. I’m sorry you needed another bag, but there was a section of intestine that seemed very damaged, and we didn’t dare join the ends together in case it leaked and made you so sick again.’
Ujjal was tired. He wasn’t sure he wanted to talk about his insides today. But the young surgeon continued, in a voice that was kind and concerned. ‘It will become difficult for you in the future if the leakage continues. We will try to manage any pain you may have. But if you prefer not to endure the progress of the illness, we have colleagues who will help you with euthanasia. You will qualify because of the extent of the disease you have. We will be able to sign the forms to give permission. You only have to ask…’
Ujjal rested his head in the pillow and closed his eyes. He wanted to talk about going home. He would ask the nurses later.
By the end of the next week, Ujjal’s IV drips were down, he was eating small meals, and his wounds were healing. His bags were functioning, and he was moved from ICU to a surgery ward to continue to recuperate.
Now, each day followed the same pattern: early breakfast, then managing his stoma bags himself, as a matter of principle, despite offers of help from the nurses; a shower–oh, the joy of a shower after so many days of bed baths–and changing his sweaty pyjamas; a nap; lunch; a visit from a friend, or possibly from Tabitha with Mama; another nap; and at the end of the afternoon the surgeons’ ward round to inspect wounds, palpate abdomens, plan further treatment or give permission to go home. Every day he heard the doctors discuss progress with his neighbours: one who may need physiotherapy, another who needed an X-ray, someone who was ready to walk on stairs, the person who was well enough to go home. At Ujjal’s bed, the doctors were always so kind. They asked about Tabitha, they asked about his pain, they asked about the ooze. They asked whether he had any worries. And they reminded him that if it got too hard to bear, he could talk to them about euthanasia. Then they moved on.
Ujjal began to dread the ward rounds, to fear the relentless cheer of benevolent voices that offered antibiotics to some, physiotherapy to others, and death to him, like items on a treatment menu. He began to realise that the kind doctors were fearful for him. They could envisage further deterioration in his condition, a deterioration that they considered hopeless, undignified, horrifying; a deterioration that would be worse than being dead. Ujjal began to perceive the sunny, six-bed bay as a prison from which death was the only escape. He knew he had to leave.
The professor was brought to reason with him; Ujjal’s wife was sent for too. The prof explained to them both that Ujjal had very delicate wounds; some infection that could not be eradicated because the bowel was still leaking internally; tumour still growing, outstripping its own blood supply, dying in the centre and turning to mushy ooze that leaked from Ujjal’s broken wounds. This is not because you are not a clean person, he reassured him with great warmth and empathy, it is the way the tumour behaves. It makes the smell and the oozing discharge no matter how many times you bathe. Many people would prefer not to live in this condition…
Ujjal demanded his bag and his belongings. He insisted on being driven home by his wife, and then he telephoned his mother in England and asked to borrow the money for the boat trip to return to her house. Within a week he was resident in his mother’s spare bedroom, while Tabitha and her mama slept in the room next door in old bunk beds used by Ujjal and his sister as children. This is where his mother’s GP came to visit him, and where he was referred to our hospice.
Our hospice outreach nurse visited Ujjal at home, and came back to discuss how we might be able to help. She described his needs under our usual ‘Physical’, ‘Emotional’, ‘Social’ and ‘Spiritual’ headings. Physically, Ujjal was thin and pale, dehydrated but too nauseated to drink much. He had intermittent abdominal pain, and the skin of his scrotum was becoming sore because of his frequent washing of the smelly ooze. Emotionally, he was relieved to be out of the reach of further offers of help to die, however kindly intended, but he was anxious about what might happen to make his life the ‘worse than death’ scenario clearly anticipated by the Dutch doctors. Socially, the house was too small for Ujjal, his wife, their active toddler, his mother and the many friends who came to visit daily. Tabitha was confused by the regional English accent, clinging to her mama and speaking only in Dutch. The position of Ujjal’s bed made nursing care difficult. Spiritually, he swung between two extremes. Sometimes he was buoyed by his hope to remain alive long enough to see Tabitha start school; bargaining with a God he was not sure he believed in caused him to play down his pain in an effort to ‘win points’. At other times he wondered whether he had been a coward to run away; whether, in failing to embrace euthanasia while his quality of life was still tolerable, he had brought sadness and an inescapable burden on the people he loved.
Ujjal was admitted to a single room at the hospice the next day. A day-bed in the room was made up for his wife, and we borrowed a travel cot for Tabitha. In effect, they took up residence while we considered how best to support Ujjal’s decision to live with his most beloved women for the rest of his foreshortened life. Gradually we acquired more background information, and the Dutch doctors were wonderfully helpful in sending English summaries of their records, scans and surgery notes.
Ujjal was enthusiastic to try any experiment that might improve his wellbeing. Thus, we devised ways to use tampons to collect the pus from the wound in his bottom; we used drugs to alter the consistency of his faeces to reduce leakage; we used special w
ound dressings to contain and reduce the smelly ooze. Although the cancer mass in his pelvis was growing, we used a spinal line to numb the pain–the usual intolerable side-effect of loss of bowel and bladder control was already solved by the system of collection bags since his surgery. Ujjal adapted to wheelchair mobility, taking Tabitha for rides around the hospice and grounds. They both took a mid-afternoon snooze, for which we were all grateful–Tabitha was a delightful bundle of noisy energy, and the respite was vital for everyone.
Today Ujjal is explaining to Emma, one of our trainee doctors, about the Dutch healthcare system. He knows that he was expertly managed throughout his illness, by knowledgeable, competent, kind practitioners in the Netherlands. He appreciates the expertise of the surgery and ICU teams who, despite the challenges, have certainly extended his life. His only criticism is that there was a subtle, entirely unintended nuance in every consultation once his cancer began to spread. In the end, this nuance was too frightening to tolerate.
The possibility of allowing euthanasia, without prosecuting doctors who follow a strict set of rules, is permitted in the Netherlands to provide a legal escape route from unbearable suffering towards the end of life, and Ujjal had admired the Dutch pragmatism that enabled this practice. Yet once the possibility of euthanasia was raised for him, he found that he was afraid to admit to new symptoms, in case euthanasia rather than symptom management was recommended. His conversations with his doctors developed a new tone: their sense of helplessness in the face of his symptoms, and hopelessness at his prognosis, communicated itself to him. He perceived a preference to control the uncertainty of his disease progression by accelerating his death. Ujjal ran away from that certain, controlled dying to live with the hope of uncertainty. It was a compromise that might break his body, yet save his sanity. He had experienced an unintended and chilling consequence of an entirely humanitarian change in legislation.
With the End in Mind Page 18