“I’m in bed thirteen, can you believe it? That nurse can never get the canula in and when she does it really hurts. She had my arm in a bucket of hot water and she still couldn’t find a vein. They’re only allowed three tries. I was ready to ask for someone else…”
My mother is on a roll. We sit in nasty leather chairs outside the hospital gift shop, staring at the shelves stacked with Lucozade and crossword puzzles. Neither of us can find the words to say what is really on our minds. At times like these humour is our best defence.
Canulas are thin rubber tubes like pieces of plumbing, which are used for the delivery of intravenous fluids such as chemotherapy. They are normally inserted in the back of the hand, in the sinewy veins near the knuckles. After a time, the veins harden and inserting them becomes more difficult. My mother’s canula is fragile and hangs limply from under her wrist. She eyes it with suspicion. An expert by now, she knows it will have to be redone.
Finally, we are shown to her bed on Wilson ward. The space is dingy, illuminated by overhead neon strip lighting. Red London buses growl past the windows, which shudder in their frames from the heavy vibrations.
The chapel is just outside the ward. Candles flicker in the low light. On the front bench a cleaner in white overalls sprawls out asleep. His open mouth releases the occasional snore, punctuating the silence. At the rear, a pin-board is plastered with post-it notes. Each note bears a message of hope. My mother scribbles, ‘Please pray for Kathy Hunter,’ and pins it to the board. She is Roman Catholic but different denominations do not matter here. Here, where so many people are housed under the same roof with the same wish: to live. So many people under one roof with the same disease: cancer.
Kathy is jaundiced again. It has been developing in her skin like a sepia photograph. When we were children, she would poke out her tongue and we would laugh and say she had the tongue of a snake. Now, the whites of her eyes are yellow like a snake, but nobody finds it funny anymore.
We have been here before. Five years earlier, Kathy had a mastectomy after multiple Grade Three lesions–the more aggressive kind–were found in her left breast. If cancer cells break away from a tumour, they often become stuck in the nearest lymph nodes and are flushed around the body. My mother was lucky. Her lymph nodes were clear. Four cancer-free years passed. It became a distant memory.
A year ago, to our surprise, the cancer returned. It blocked a bile duct in her liver and so a metal stent was inserted to help clear the duct. When bile cannot drain, the waste product, bilirubin, builds up in the blood and this causes jaundice and eventually sepsis.
Again, my mother recovered, endured six months of chemotherapy and was once again cancer-free. However, remission proved merciless and lasted only a short time. So it was back to the chemotherapy, and this time Capecitabine tablets, because it was far too soon for another intravenous cycle. We knew we were running out of options, but the tablets seemed to be working. Then my mother became jaundiced for the second time.
“Stents can become blocked as a matter of course,” the consultant says. They will position another stent over, or next to, the existing one to clear any obstruction. The procedure is presented as simple and routine. She will be out of hospital in a week.
That night, it rains harder than it has rained all year. While my mother sits in the chapel steel pins bounce off the pavements outside. Relatives crowd inside the hospital entrance, not daring to go off into the night. Perhaps it will ease soon, they mutter to one another. When thunder rolls through the sky just afterwards, they realise it is set for the night.
In the end they run for it, one at a time, like darts. They run as close to the buildings as possible for there is no cover between the hospital and the tube station. Finally, at South Kensington station, with hearts beating and flushed faces, they stop running. They wring out wet hair; wipe faces dry; clean off steamed up glasses. They ran in the rain on a warm summer’s evening. What fun. They are alive. It is good to be alive.
Two weeks later, I visit my mother’s silent home. In the kitchen, I find a pile of freshly ironed clothes that will never be worn. On the door step, a note for the milkman, ‘no milk today, thank you.’
The consent form Kathy signed upon admittance to the hospital states, ‘please call next of kin (daughter) only with permission of Kathleen.’ The ‘only’ is underscored several times in heavy, black pen. My mother was reticent to confide in me about her prognosis. Even in her bleakest moments, she did not want to burden me with any pain. It was the first time in our lives there was a secret that could not be shared. Yet, I also knew she was wrong to try and save me from that pain, because we never discussed her treatment or what would happen when she died.
“It is always easy to see things with hindsight in medicine,” says the consultant in his letter of condolence, “and in this case, with hindsight, the procedure was clearly ineffective. Nevertheless at the time we went ahead, it seemed to us to give her a chance of improvement however slim, and I imagine this was the view she took also.” This is his apology.
I think back to my mother lying in the hospital bed just after the operation. She was sleepy. Her lips were dry and blue. I asked if she was in pain. She thought about it for a long time. Finally, she replied that it only hurt if she moved.
Over several days, I kept a bedside vigil as her condition worsened. The doctors came and went, briskly swishing the curtains back and forth and examining my mother with worried expressions. First, the medical team, then critical care, followed by symptom control and the nutritional team. As the days passed they blurred into one. Then I noticed their language begin to change.
Ruth, a young nurse with soft eyes and grungy hair, gently suggested they “might not be able to make Kathleen better.” Others said we should focus on “making her comfortable,” or talked of what was “fair for Kathleen.” When they began to suggest that it might be “appropriate to discontinue nursing interventions,” the reality of the situation finally hit home: they were trying to tell me she was dying.
The gap between medicine and reality at that point was so wide that we might as well have been talking different languages. Medical culture was casting a defamiliarising spell. My mother reduced to a risk analysis. I also felt alienated at a time when I most wanted to be involved. How could I ‘trust’ the nurses to look after Kathleen in the way I would have done myself? I quickly learned that the doctors made treatment decisions and the nurses only carried out their orders. Time and again, the nurses were understaffed and overtired, and the staff rota changed every day.
There is also the issue of priorities. If a nurse has two patients who require help at the same time, which one does she go to first? Is it likely to be the dying one? And is a relative going to rationalise that and think it fair that the one who will recover will be attended to first?
I worry about Kathleen’s syringe driver and whether it is functioning (when medication has been discontinued, opioids such as Diamorphine and sedatives such as Midazolam are delivered intravenously to avoid the disturbance of regular injections). I worry whether she is in pain since she often cries out and clutches the air. I worry why the nurses insist on washing and turning my mother when it seems to hurt her so much that she whimpers afterwards. I worry, most of all, about her dignity in this place.
One sleepless night, I wander into the hallway. Kathleen has stopped drinking water because she cannot hold it down, but her mouth is so dry that I am holding cubes of ice over her lips to wet them. I need more ice but I am not supposed to help myself. Notices in the kitchen warn of the risks of passing infections to patients. I cannot find a nurse. Instead, I find an A4 booklet lying open on the reception desk. My mother’s name is typed on the front:
‘Liverpool Care Pathway
Promoting best practice for care of the dying
Care of the Dying Patient Pathway
FILE IN MEDICAL NOTES’
The title’s reference to Liverpool confuses me. I can only think of my family’s roots in Manchester and the strong rivalry that exists between the two northern cities. For example:
Question: What is the difference between a battery and a Scouse (Liverpool) fan?
Answer: A battery has a positive side.
It would come as no surprise to many a Mancunian that the grim reaper would come calling in the opposition’s football strip. But this document of death, bearing my mother’s name, feels like just another terrible joke.
I read that the Liverpool Care Pathway (LCP) was developed by the Royal Liverpool and Broadgreen University Hospitals NHS Trust and the Marie Curie Hospice in the 1990s. It aimed to help clinicians plan a ‘total care package’ for people diagnosed as close to death. The problem is that diagnosing death is still an inexact science. There is a margin of error, which poses great difficulties for doctors. Even the concept of a ‘total care package’ is insidious to many practitioners, periodically inviting accusations of ‘legalised, sanitised euthanasia.’
Claud Regnard, Consultant in Palliative Care Medicine at St. Oswald’s Hospice in Newcastle, UK, tells me: “Medicine has searched for over 40 years looking for clear indicators of prognosis. So far, no one has found anything reliable. There are only two methods: firstly, to give someone the known statistics (e.g. a 50% chance of surviving five years). This tells the individual nothing of his or her own survival but a few find knowing the ‘odds’ helpful for future planning. Secondly, there is the ‘horizon effect’ or that the closer you get to death the more accurate you get. If someone is deteriorating month-by-month they probably have months left, while someone changing day by day may have only days.”
I have been at the hospital for a week. My mother’s condition is deteriorating. I stay at her bedside without a change of clothes and little to no contact with the outside world. It is reassuring in its own way, this hospital womb. Outside it is too cold and indifferent: business as usual. Day and night blur into one and my brain will not shut down for sleep. I keep wondering why this had to happen.
I decide to put my question to Kathleen’s doctor, Tom Waddell. He is a pale, sensitive man with a grave expression and a soft Scottish accent. He takes great care when he examines my mother. He sits beside her when he talks to her. Moreover, he speaks in simple terms, not the complicated terminology other doctors use, as if it somehow slips their minds that their patients are human beings.
“Was my mother healthy enough to have the operation in the first place?” I ask him. (“Should she ever have had the operation at all?” I try to say.)
Waddell answers in a steady voice as if he is talking about the weather, but I can see in his eyes that the outcome has upset him. “Had Kathleen not had the operation she would probably have enjoyed many more months of active life,” he says, “but you have to balance that against the chances of improvement from the stenting.”
It is not much, but he is honest. It is still no consolation. At that moment, administering care seems like shooting a game of pool. Each drug sets a series of consequences and effects into action. Chemotherapy, for example, kills cancer cells, but it also destroys the body’s immune system. Medicine is a culture of risk and the complexity of balancing treatments is enormous. This is the principle of iatrogenics: disease or inadvertent effects resulting from medical treatment or advice. In the US, it is the leading cause of death and injury, far ahead of both heart disease and cancer. The doctors have been working so hard to save my mother. I find myself wishing they had just known when to stop.
Kathleen is moved several times from ward to ward and from bed to bed. Slowly the geography of these moves becomes clear. Palliative care sits on the top floor of the Royal Marsden Hospital. The corridor snakes around in an L shape away from the reception, offering the most magnificent views over South West London. When my mother is finally moved into the end room next to the service lift, I realise this is the shortest possible distance down to the mortuary. The room is number 14. Sequentially it should be 13. But, as usual, the hospital staff has thought of everything.
Naturally, I find myself referred for grief counselling. These recreant thoughts help no one, least of all me. I stare into space while the grief counsellor presses me to accept that my mother knew she was dying. I simply cannot. No, will not under any circumstances. When the time came to make the decision to stop the treatment. I asked the nurse not to remove the canula from my mother’s hand. I knew she would notice the absence of wires and drips. Although she was sleeping nearly all the time, rare moments of clarity still presented themselves. At one such moment, she opened her eyes to see my brother and myself staring at her, glum-faced. “Cheer up,” she briskly told us, “I don’t want to see long faces. I’m not going to die you know.” The determination in her voice told me everything. The spirit is always willing. It is the flesh that is so weak. And still, the grief counsellor won’t let the matter drop. I wonder how this is supposed to help.
Professor Smith, my mother’s consultant, concludes his letter of condolence: “A further ultrasound showed there was extensive disease. At that point, it was clear that the deterioration was a combination of infection and progressive cancer, and there was little further we could do other than continuing the antibiotics.”
If only my mother had not been admitted to hospital in the first place, I think. If only she had refused the treatment. If only… If only. Two little words that always arrive too late. Just a little more time, we ask. Just another day. Just another breath. We bargain and barter for our lives. “How well your mother looked when I last saw her,” my friends say. They cannot believe she is gone.
Nor can I. Even when death is inevitable, when hope is yesterday’s news, still I stroke her soft, blonde hair, and silently repeat over and again, “Please don’t die Mum. Please don’t die.”
I was with my mother when she died. I held her hand. It was 7.45 am on Tuesday 28th July. The sky was blue and cloudless, and carried the promise of a summer’s day. It reminded me of being a little girl and holding my Grandmother’s hand for dear life, while she asked me how many sailor suits I might cut from above.
My mother died with grace. She simply stopped breathing as if trying to cause the least possible fuss. Above all, she died with the dignity that was all but denied her in ten days of panicked treatment in emergency mode. Dying well, as the Buddhists describe the process, should not be a matter of chance, funding or convenience. It is our basic human right. Let us not forget that simple truth.
I sit in that plastic chair beside my mother’s bed. I see the purple bruises form on her young, olive skin as the blood stops flowing through her veins. I can’t even comprehend that she is finally gone, let alone how much I will ache to have her back. And in that moment, shock claims me and I look up and I notice: it is such a perfect day outside. It is such a perfect day.
About Alice: Alice Hunter is a British writer living in Santa Monica, California. Her recent screenplays have received awards at the Los Angeles Film and Script Festival and the Hollywood Screenplay Contest, both in 2011.