Dec 112023

Helena was a woman in her 50s of Greek-Australian background. She came into the oncology ward where I was a fairly new social worker because of severe symptoms in her GI tract – nausea, vomiting- plus constant fatigue. The doctors on the ward established within a week or so that Helena had an advanced bowel cancer that was blocking her stomach and gut. It was beyond treatable already. To relieve her nausea she had a nasogastric tube to drain her stomach contents upwards into a bag. She was a very ill woman, but she was still able to walk, and speak to staff and her family.

Helena’s husband Stavros and son Chris were a constant presence on the ward, and made it clear from the outset that we were not to use the ‘C word’. Stavros’ reasoning was firstly that he didn’t believe she had cancer, and secondly that if we were to speak of it to her she would “give up and die.” It was, and still is, a strong conviction in many migrant communities that truth-telling about cancer is cruel – a kind of curse which condemns the person to die, and die sooner.

Stavros had his own theory about what was wrong with Helena: she had an infection. His knowledge of body functions was limited, and he did not accept that what the doctors were telling him was true. His son was less adamant, but backed his father up, seeming to see the issue as a kind of power struggle.

My role in all of this was to try to support Helena, work with the family, and facilitate family meetings. Stavros and Helena both spoke reasonably good English, so an interpreter was not needed, usually another part of my role. I met with Helena initially, but Stavros hovered, monitoring all interactions with his wife. I asked Helena her view of why she was in hospital. For Stavros, this was skating too close to the ‘truth’, whatever that was, and he ushered me out of the room. I was not to speak with Helena again. The next day he looked guilty and presented me with a bottle of wine, but he had not changed his view.

Meanwhile Helena was denied the kind of pain and symptom relief the nurses and doctors could see she needed. Her family would wake her up on their arrival on the ward and get her to walk around the corridors with her bag full of dire-looking fluid. Things came to a head when the ward staff- nurses, doctors, allied health (social worker, physiotherapist) felt that Helena was suffering and that they could not do their job effectively. It can be hard in this kind of situation to say who the patient ‘belongs to’ – the staff or the family. It was difficult to speak with Helena openly, and we needed to know her wishes and get her consent for comfort care. This was another flashpoint: pain relief, i.e. morphine, would make Helena less alert, less able to communicate with her family. “But she’s not in pain,” the family protested, “We asked her.”

The conflict escalated; this had been going on for close to two months. I and other staff grew increasingly frustrated. The decision was finally made in a staff meeting that we needed to push through the family’s gatekeeping and meet with Helena on her own. One of the senior doctors and I met with Helena in her room. We asked her what was more important to her: “Do you want to be comfortable, free of pain, or do you want to be able to talk with your family?” She said “I don’t want to suffer.” The doctor asked if she had questions, things she wanted to know. She looked uneasy, and said “No.” This clear statement from Helena allowed the ward staff to take a palliative approach, relieving her pain and distress rather than trying to treat the cancer.

Stavros and Chris never did accept that Helena had an incurable cancer, but they could eventually see that she was dying. After nearly three months of wrangling over truth-telling, who was in charge of Helena’s welfare, and much soul-searching among staff, Helena died peacefully.

In the aftermath of her death I found myself wondering “Are they right, these families? Will their loved one give up and die if they know the truth?” I researched the issue, and wrote a conference paper on ‘Offering Truth’, which was the state of the art at the time. The ill person guides us, telling us how much they want to know. This remains a fraught issue in oncology, but the trend is toward the truth.

Based on a true story. Names have been changed.