A Missed Opportunity?

I recently admitted a new patient onto our hospice inpatient unit. Sarah was in her late 50s and had been fighting breast cancer for many years. She had been through several cycles of chemotherapy, as well as radiotherapy. She had an indwelling peritoneal catheter, and over the last six months had faced repeated hospital admissions with various complications. Nausea had become intractable, and a community nurse had suggested a hospice admission. It took a week of persuasion before she and her family would agree to a referral.

Sarah's husband and young daughter were present for the consultation. Almost as soon as the introductions were over the daughter asked defiantly, “So are you going to start the fluids straight away?” I was taken aback. It appeared the daughter was under the impression that her mother had come to the hospice for intravenous fluids. “This always makes Mum better and then we can take her home, it saves us going to the hospital.” Sarah had become so nauseous that she was now unable to tolerate oral fluids; the family's biggest concern was dehydration.

Sarah was shockingly cachectic, there had been increased hospital admissions, her ascites was growing, and her blood picture was poor. She was clearly losing ground and would soon be entering the final stages of her disease. Her oncologist had informed the family that there was no more that could be done, but the husband explained that he had searched online and identified a breakthrough treatment overseas. Sarah rolled her eyes, looked at me, and dropped her head back onto the pillow. I could see she was exhausted.

We talked in length about the option of intravenous fluids. I explained there were treatments available to control the nausea, which may help her to tolerate more oral intake. Together we agreed to a trial of intravenous fluids for twenty-four hours; if there were adverse effects, the fluids would be stopped.

Toward the end of the consultation I asked if anyone had previously discussed resuscitation. Sarah immediately started shaking her head, “no, no, PLEASE stop talking.” I tried to explain as compassionately as possible that I wanted to involve her in this discussion, but she would not engage in any way. I later sought advice from my consultant, who the next day attempted to initiate the conversation again. The response was the same and she asked him to stop. “Do what you need to, but I am never going to talk about this.”

Sarah stayed a week and her nausea improved. She was able to eat a full meal, which delighted her family. On discharge they declined further input from our family support and community teams. “Palliative care isn't really our thing.” Sarah passed away in hospital six weeks later, and I was saddened to hear the family never engaged our services.

This case highlights the difficulty of advance care planning, particularly in young patients and those that have been ill for a long time. I could see that the family had been living with this for many years. Her children were under ten when she was diagnosed, thus for the majority of their life Mum was a patient fighting cancer. She went to the hospital, she got better, and she came home. The reality that they did not want to face was that one day she would stop being a patient fighting cancer and become a patient dying of cancer.

A way to address these challenges is early referral to palliative care services, working alongside the oncologist rather than picking up patients when there are no oncologic treatment options left. As the WHO definition states, “Palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.” ¹ As well as symptom control, the palliative care multidisciplinary team is able to address psychological, social, and spiritual factors. Early intervention allows time for the patient and their family to open up to the idea of advance care planning and plants the seed for important discussions about end of life.