I’m sitting in a hospital waiting room with a family whose father is dying. The clerk is scrolling through the channels on the television searching for something appropriate. She scrolls past several murder shows, a forensics mystery show and a couple of medical dramas. She briefly pauses to consider the news, but there are too many bomb blasts today. A cooking show looks promising until she remembers that several people in the waiting room have nausea. We end up assailed by a shopping channel, shiny with the promise of health, prestige and glamour.
We are here to meet the patient’s nurse, a social worker, a neurosurgeon and a neurological registrar, with other members of the family. The neurologist is busy. The oncologist will pop in later if he can, he said. I am there as a doctor from palliative care.
The patient’s family have conflicting opinions on what his treatment should be for a fast-growing, aggressive brain tumour. The most recent surgery hasn’t helped. I know what the other doctors are there to explain: they have reached the limits of their ability to help the man and that he should come to the palliative care ward until he is well enough to come home and be cared for by family and friends, with continued support from the community palliative care nurses.
Or he may die in the palliative care ward. “Do you have any questions?” they ask the family after they explain all this.
The patient’s son, John, is angry. “Why is he worse now than he was before the operation?” John demanded. “Why isn’t he better? Are you telling us he’s not going to get better?”
The patient’s daughter knows her father’s life is coming to an end. She wants the chemo, radiotherapy and surgery to be done. “He was almost blind before the surgery. But now he can’t walk and he can’t talk properly,” she cried.
The neurosurgeon has had many conversations like these before. “Your father had a malignant tumour the size of a small orange. The surgery was only ever palliative, not curative. It was a de-bulking operation, to stop the tumour encroaching on more of his brain. It’s very sad,” he continued, “that Mr Nguyen has these other problems now. We have no way of knowing whether these problems are caused by a progression of the disease or are an unfortunate side effect of the surgery. I’m very sorry that this happened.”
A ‘progressive’ disease is one that keeps getting worse until severe disability or death, a classic example of doctor doublespeak — something that sounds good is very bad. I could see the surgeon was sincere, but I wasn’t sure if the patient’s family, dealing with grief upon grief, could see that.
If only there had been a clear discussion with the family before the operation. Perhaps some of the patient’s family understood that the dramatic-looking surgery was not meant to be a cure. But sitting on vinyl chairs in the windowless room, it was clear from our conversation that several family members had not understood that at all. Someone was made to sign a consent form for the surgery, no doubt, with its list of potential horrors. But there were hopes attached to it that had never been achievable. I could see why the meeting had been called.
As the meeting wore on, I was aware that Mr Nguyen, the patient, was in bed in the ward outside, his shaven head disfigured by a long wound held together by a spectacular row of staples. He was weak and in pain following the surgery and more severely disabled now than he had been before the operation ten days ago.
“There’s still hope that he will recover at least some of his mobility. The physiotherapist has been visiting,” the neurology registrar said. He turned to me. “He can still have physio when he’s at pall care, can’t he?”
“Of course he can,” I said. “The physiotherapist from the rehabilitation ward visits. He’ll do his best to help. We can ask the speech therapist to help with his communication, too. She’ll have ideas and tools to help.”
“Our palliative care ward is a good place. It’s high on a hill and looks out to the sea,” I continued, speaking to the family. “Not everyone who comes there dies, you know. People come in for awhile to get some medical issues sorted out and then go home. Some patients do that many times. The nurses are kind and he can feel safe there. You can feel safe about him being there.”
I was aware that Mr Nguyen and his family had been suddenly thrown into the hospital system just over a month ago, when a big, roughed-edged brain tumour, impossible to fully excise, was seen on the MRI his GP requested. Mr Nguyen had headaches and his vision was blurred. He thought he might have been smoking too much, his daughter told me.
Perhaps the oncologist had discussed Mr Nguyen’s illness and prognosis with him and his family. Perhaps, like many of us, they had heard nothing after he said ‘tumour’. The word ‘malignant’ may or may not have registered, too. We had been in the meeting room for over an hour and nobody had talked about the prognosis for Mr Nguyen and his ‘progressive’ disease. John, the son, finally asked the question everyone may have been thinking. “So you’re sending him to palliative care to die, right? What about if we get a second opinion? Maybe he should have another operation.”
The neurosurgeon shifted in his chair. “We never expected to get all of the tumour out with the surgery. Your father — I would have to check with the oncologist — would have had chemotherapy and radiotherapy to shrink the tumour as small as possible before we performed surgery. The kind of tumour your father has, well, we were never going to get all of it. Now he is in a bad way. He’s lost most of his vision and his speech is impaired.”
“And he can’t really walk anymore,” John added, tears escaping his dark eyes.
“That’s right,” the surgeon agreed. “And we can’t honestly say whether the surgery we did to try to stop things getting worse has aggravated that problem. Of course you can get a second opinion. My opinion is that any more surgery would put him in danger of more loss for no gain.” The surgeon’s mouth was thin and tense. His alert eyes looked directly at John, who was crying. “It’s a very unfortunate situation,” he added awkwardly.
There was a silence.
“At palliative care we have treatments to make your father as comfortable as possible for the rest of his life,” I said. “We’ll have a family meeting when he comes to the ward, to make sure everyone knows what's going on. I'll book an interpreter.”
On my way out of the hospital, I glimpse the television again -- impossibly thin people are peering at a plastic corpse. Unfortunately, this kind of forensic goriness has seeped into our culture’s understanding of death. Television has become a place where we externalize our deepest fears as a society. I see it differently. Death is the spirit leaving the body, but it is usually a used-up body being left and it is not a violent process. With the right medicines and loving care, it does not have to be physically painful or frightening, even if there will always be grief.
Perhaps the TV in the hospital waiting room should show scenes from the pall care ward. There is plenty of drama there, but it mainly occurs in the heart and soul. You would see the fresh flowers in rooms, a terrace garden with a fishpond, a meeting room with stained glass windows. You would see our generous volunteers who come to do foot massages or sing to the patients. You will see social workers and doctors engaged in challenging but profoundly healing discussions with patients, families or friends.
In some rooms, you might find altars to ancestors. We encourage pall care patients to find comfort in their cultural and spiritual beliefs. These are often a great source of strength to patients and those that love them. If they want to, Mr. Nguyen’s family is welcome to set up tea cups or make offerings of oranges in lucky numbers. The Pall Care People Show would also feature hard-working, kind nurses. Sometimes, as the sun sets, the volunteers take around an evening ‘Jolly Trolley’, offering patients a liqueur. It’s a world away from CSI.
Thumbnail photo of young man pushing away by Ian Espinosa.