The new patient, Mrs Namrita Baht, is presented by our GP trainee. Namrita is thirty-seven years old. She is married with eight children, aged between sixteen and two. They are a devout Muslim family, and she observes prayer times at the hospice. She has lung cancer that has now spread to her liver, and this is causing her to feel very nauseated. She has been referred to the hospice by her GP, who found her vomiting into a bowl at home, surrounded by concerned relatives and her eight children, and thought we might be able to help to manage her symptoms and give her a chance to rest.
Namrita had agreed to come to the hospice. Her mother-in-law brings the children to visit by taxi every day. Her husband attends every evening after work. Her oldest daughter, Rubani, is sleeping at the hospice and acts as an interpreter for her mother, who speaks no English. What about the interpretation service, I ask. It seems callous to ask a sixteen-year-old to interpret conversations about her mother’s serious illness. Namrita doesn’t want an interpreter apart from family, the team assure me. Her nausea remains a terrible problem, but she declines to take any of the medicines that we would usually employ.
‘Do we know why she won’t take the medications?’ I ask.
‘We can’t work it out,’ says Sister. ‘At first we thought she was afraid of the needle, but she won’t try tablets for constipation or linctus for her cough either.’
‘Does she think she should be using traditional medicines?’ asks the chaplain.
‘No, it’s not that,’ says Sister. ‘It’s as though she and her husband believe that she should be suffering. It’s so sad to watch. She can’t move in the bed without retching. Her youngest is only two, and he wants to sit on her knee, but Namrita has to keep the bowl on her knee. He sits on the knee of his grandma or one of his sisters, and just cries.’
‘Sometimes devout Muslims will accept suffering as the will of Allah,’ says the chaplain. ‘It may be hard for us to watch, but this may be something that makes sense to her. That’s worth asking about on the round.’
The meeting takes on a distinctly glum mood. We deal with suffering every day, all day, but our coping mechanism is to help. If our help is declined, we feel disempowered and our helplessness opens the gates to sadness.
We finish our no-longer-hot drinks and set off around the ward. Sister has asked Mr Baht to attend, and he will be here in an hour, so we review everyone else first.
By the time we reach Namrita’s room, the chaplain has left us to visit a family who requested her help, and the OT has sent apologies because the bakery therapy has unlocked vast reminiscences for the forgetful patient, who is delighted that the rock buns taste exactly as she remembers them from childhood. There are only six of us in the procession, but it still feels numerous and awkward as we ask permission, and then file into the room.
Namrita is tall but wasted. She sits on her bed hunched and still, trying to overcome the waves of nausea storming her being. Her hijab remains in place even when she is retching and heaving into a bowl held by the nurses or by her calm daughter Rubani, who rubs her back, murmuring comfort in Punjabi and explaining Namrita’s distress to us in English. Mr Baht sits on a low stool at the foot of the bed, running his fingers through his hair and frowning. The other children and their grandmother have gone to wait in the day room, respectful of the privacy they believe to be required when The Consultant attends.
I introduce the team, shake hands with Namrita and her husband, and move around the bed to sit in the upright armchair by the window. The rest of the team find places to sit. It’s another of my ward-round habits that we all sit–it shows respect when we do not stand above the patient’s eye level, and gives the tone of a visit rather than just ‘popping in’. The single rooms are designed with a sofa-bed built into the wall, so four people can perch there. The others find chairs or sit on the floor. I’m usually a floor-sitter myself, but for this family I have the sense that etiquette is important, so I sit up straight and try to look like The Consultant.
We discuss Namrita’s health journey so far. Her husband, Preetam, speaks fluent English with a song-like Punjabi accent. He explains that he cannot usually visit during the day because he must run his business. Rubani fills in some details: her father owns a flourishing carpet shop, and is a respected member of the local Pakistani community, the mosque and the mercantile confraternity. He supports his family in the UK and in Pakistan. She is clearly very proud of him. Work is an important duty for him, even though his wife is so sick. ‘It breaks Daddy’s heart to see her so sick,’ Rubani tells us, ‘and he cries sometimes.’
Mr Baht tells us that Namrita has been the treasured jewel of his life. He brought her to England for them to make their fortune selling rugs and carpets. Although a fortune has not quite been made, a happy and comfortable life has been lived amongst the Punjabi community, and Namrita has never felt a need to learn English. The family has grown, and most years they pay for relatives to visit them from Pakistan. They all enjoy extended visits from Namrita’s sister and family, and from Preetam’s parents. This was happily-ever-after.
Then, about a year ago, Namrita began feeling tired while she was breastfeeding her youngest child. She initially put it down to pregnancy, childbirth and her busy house, but as the baby was weaned her energy levels remained low, and she began to cough. Preetam’s mother advised traditional medicines, but Preetam was a fan of the National Health Service, and insisted that Namrita should visit a GP.
Over a two-week period, Namrita was investigated and found to have an extensive lung cancer. Preetam attended all her clinic appointments, and translated what the doctors told her. They wept together with the kind chest physician when the diagnosis was made.
‘That man seemed very kind,’ Preetam says, ‘but we were to find that he could not be trusted.’
I know the doctor he is describing, and I would trust him with my life. I wonder what happened. I wait for the story to unfold.
At all the hospital visits, Preetam translated Namrita’s questions, and conveyed the doctors’ answers to her. The cancer was too large for surgery, and she was offered a combination of chemotherapy and radiotherapy to shrink it, although the specialists in the cancer centre explained that this would not be a cure. Her best hope was that she might see her toddler start school.
Namrita entered a strange new world. She was admitted to the cancer centre, where she had radiotherapy several times each day, along with pulses of chemotherapy by drip. It was exhausting. She prayed constantly to become well enough to care for her family again, and gradually she began to cough less. She went home, where Preetam’s mother had taken up residence to look after the children, and with love and home cooking she began to gain weight. Her hair regrew.
‘She attended the school sports day and she looked so much better,’ Preetam told us, ‘until the sickness came. Feeling sick, like on a boat, all the time. Not eating. Vomiting. This was not good, and I realised that she needed help. We went back to the chest doctor, and he found that the cancer was now in her liver. Very bad. Very serious.’
He paused. We waited. He swallowed. He licked his dry lips and ran his fingers through his hair again, watching his exhausted wife retching while Sister held the bowl for her and wiped her face with a damp cloth. He was spent. My turn to talk.
‘Mr Baht, we are so very glad to take care of Namrita,’ I begin cautiously. He nods. ‘I know she doesn’t understand what I am saying, so please may I ask you to explain to her first that you have been telling me about how she got so sick?’ He nods again, and speaks to his wife in Punjabi, while their daughter watches her mother’s face with deep concern.
‘And now, Mr Baht, I hope that you can help me to ask Namrita some questions, so that we can do our best to help her. Please will you explain that I would like to ask her some questions?’
Again, he speaks in gentle tones to his wife.
‘What we would like to understand,’ I say, ‘is why Namrita, who feels so very sick, doesn’t want to take the medication
s that we feel sure would help her.’
His body snaps upright in his seat, and he fixes me with a bright and focused stare. ‘I can answer that for both of us,’ he announces. ‘We have realised that we cannot take any advice from British doctors. No–none at all. For British doctors think that they are God. They think they know the mind of God. That is what we found with that doctor we trusted at the hospital. If doctors think that they are the equal of God, then they are misguided and we must not trust them.’
I am dumbfounded. I had not expected this. I think of my gentle, kind colleague at the hospital, who has managed this family with such diligence and attention. He would be astonished to hear this accusation. He is possibly the humblest man I know.
The heads of my colleagues, all previously turned towards Mr Baht, now swing towards me. Our experienced trainee has eyes like saucers; the social worker looks as if she is watching a suspense movie. They are waiting to hear my response.
‘Thank you for telling me that,’ I say in as measured a tone as I can. ‘Please will you explain to Namrita what you just told me, so she knows what we are talking about?’ He turns to her, and the gentle tones become more abrupt as they exchange a few phrases. He turns back to me.
‘Thank you. It’s good to know that Namrita knows what we are saying,’ I say. ‘And now, if you would be so kind, please will you help me to talk directly to Namrita?’
Turning towards her, I say, ‘Namrita, I understand that you lost confidence in Dr O’Hare because he seemed to think he knew the mind of God. Have I understood you correctly?’ Mr Baht repeats my question in Punjabi–I hope. I have no way of knowing, although Rubani seems content with the exchanges. Namrita says a few words, and Rubani waits for her father to translate, ‘Indeed. We were very shocked.’
‘Namrita, can you explain to me what happened that day?’ I ask.
Her husband exchanges some phrases with her, and then Rubani says, ‘Mummy says she is very tired. She suggests that Daddy will explain, and I will tell Mummy what he is saying.’
‘Thank you, Namrita,’ I say, keeping my gaze on her. ‘You rest there, and we will let him explain.’ Rubani whispers to her mother, while I turn back to Mr Baht, and the whole team turn their heads in unison towards him.
‘We went to his clinic,’ says Mr Baht, ‘and we knew she was worse. We had discussed at home that she would want to die in Pakistan, the land of her birth, and to have the proper funeral observances there. So I said to the doctor at the clinic that I wanted to take her home to Pakistan.’ He draws breath, giving Rubani time to whisper to her mother.
‘But what do you think he said? He said her lungs could not cope in an aeroplane. So I told him we can travel by boat and by train. And then what do you think he said?’ He pauses and looks at me expectantly. All heads in the room turn towards me.
‘What did he say?’ I ask quietly, and the heads swing back to face him.
‘He said… He said… He told us that she will die before she gets there. That she will die in three months. That she cannot live longer than three months. But only God can give life or take it away. Only God! So if he thinks–if British doctors think–that they can know the mind of God, then we cannot accept their help. It is sacrilege. It cannot be so!’
The faces swing back to me. There is silence. Rubani is also silent, her eyes startled and tears on her cheeks. This is news to her. In his heated distress, her father has told her more than she previously knew. As Mr Baht holds my gaze with defiant anger, I can see from the corner of my eye that Sister is reaching out to take Rubani’s hand. All faces gaze at me. And I understand how a cultural mismatch has undermined the trust between the Bahts and British medicine. Yet how on earth can I address it? I have no words to put this right.
‘Oh, my goodness. I understand now why you don’t feel you can take our advice. I can see how hurtful those words would be, even though I think he only intended to help you.’Pause. Gazes still on me. Eyes on stalks.
I imagine the pain of these good people, trying to live faithfully. What a terrible dilemma. What courage and self-denial. I can feel my throat tightening and tears welling. I struggle to keep my voice steady and calm.
‘Mr Baht, Namrita, Rubani. I don’t know what to say to you. I am so sorry that you should be so very hurt by a doctor who is my colleague and friend.’ I pause, and Rubani whispers to her mother.
‘All I know is that, while you are here, we will treat every day as a gift from God. Namrita is welcome to stay here, whether you can accept our medicines or not. Thank you for helping us to understand. Please tell Namrita how much I admire her courage to accept these awful symptoms.’ Rubani whispers her translation, and Namrita stares at me across her vomit bowl and tries to smile, nodding.
‘Is there anything else you would like to discuss while we are here?’ I ask.
There is not. I stand. The team members and Mr Baht rise to their feet. The team leaves, and I shake hands again with the family before leaving. I am utterly exhausted by the exchange, and hopeless about being able to reduce Namrita’s symptoms. We trudge back to the ward office in silence.
We take a ten-minute debrief before we all head on to our next tasks. The OT arrives (with rock buns) and we ponder how best to help the Baht family. Their faith is of central importance in their lives, and any attempt by us to challenge their interpretation of this situation may fracture our relationship with them, as it already has with the unwitting chest physician. We decide to ask our chaplain to call their mosque tomorrow and ask for advice, without naming names. The unused drugs remain prescribed and available at any time should Namrita change her mind.
‘That was beautiful, what you said about every day being a gift from God,’ reflects our social worker.
‘I couldn’t speak,’ says our nearly-consultant doctor. ‘I just felt overwhelmed by her predicament. I was agog to know what you would say.’
I tell them that I had no idea what to say either, so I just told them how we work here: every day is a new one, like a gift, and we try to make every day worthwhile. It’s just what we do. I still feel overwhelmed, but it’s time to do the school run and then go home to prepare supper, so I gather my wits and my bags and head out as the rain starts, blowing sideways in a miserable mist that suits my mood.
My daughter is a year older than Namrita’s youngest son. Children always become skittish on windy days, and nursery is noisy and tumultuous when I arrive to claim my tiny artist clutching her painting of a dinosaur talking to a frog. We scurry like the leaf-mice back to the car, and zoom to my son’s school, where football practice is drawing to a muddy close. He is flushed and excited, and has to sit on plastic bags in the car because he is so wet. This amuses both children immensely, and there is much merriment on the journey home towards a warm bath and then our meal with their daddy. They love our attic bathroom, feeling warm and bubbly while the rain pounds the windows and the wind howls around the chimney above us. They chatter about dinosaurs and whether or not all frogs speak the same language, and I watch and listen and laugh and chat and wonder how Namrita will ever again share this intimacy with her beloved children in the short time she has remaining.
The next afternoon the wind has stopped when I arrive at the hospice, and the wet pavement is littered with leaves shining yellow, red and tawny gold. As I enter the building I find a note in my tray from Sister: ‘Please come downstairs to see me about Namrita.’ My heart sinks.
But Sister looks upbeat. ‘Come and see this,’ she says, leading me along the ward corridor, past the delicious smells of the dinner trolley that remind me again of all the pleasures Namrita has lost to nausea. Sister pauses outside Namrita’s open door. Inside I see Grandma and Rubani sitting by the window, facing the door and chatting to each other. Moving position, I can see Namrita sitting in bed with her toddler on her knee. She is smiling and utterly absorbed in her conversation with him. She begins to sing and to bounce him on her knee. There is no vomit bowl in sight. How is this possible?
>
Rubani smiles at me, and speaks to her mother. Namrita looks up at me and smiles a glorious, joyous smile. I am speechless. She lifts her sleeve and shows me the place where a tiny needle is taped to her skin, and then I see the fine plastic tube and realise that she has a syringe-driver pump in place. She is taking the drugs for nausea.
‘How…?’ I cannot even frame the question.
‘Yesterday evening,’ says Sister, ‘Mr Baht came back after he had taken the children home, and they talked, and then he came to the office to say that she would try the drugs we recommend, because we are respectful of God’s gift of life. She had a priming dose, then we started the syringe-driver. She slept all night, kept her fruit juice down this morning, and ate a chapatti for lunch.’
Managing Namrita’s nausea, while maintaining her sense of spiritual integrity, gave her back her life. She was able to return home and live amongst her beloved family. She died in her own bed ten weeks after the chest physician predicted that she would not live for three months. That was seventy days of being a wife, a mother, a householder, a lover of God as she understood him. Although she never returned to her homeland, she was surrounded by her devoted community, and in the traditional manner, she was buried before sunset the following day.
‘Only the Good Die Young’
As we finish our tour of the facts of dying together, let’s pause to look at a paradox that occurs daily in palliative care. Often, when we turn up on a ward, or take a referral for community palliative care team support, the staff ask, ‘Why do you always come to see our most lovable patients? How do you get all the nicest people in your care?’ And it feels like a truth: when we look around the hospice in-patient ward, and the day care attendees, or our case list for the hospital or community palliative care teams, we realise that these are all remarkable people. Are we just looking at the world through rose-tinted glasses? Or is there genuinely something special about people who realise that the end of their life is approaching?
With the End in Mind Page 29
