When cancer patients reach the end of the road in terms of their treatment, the decision to continue with palliative chemotherapy can be one of the hardest they will face.
British mother, Kay Puddington had to make a decision no mother wants to make, ever – knowing when to let her little boy go. Her son Reece (11) had neuroblastoma, an incurable cancer, and had already spent more than half of his life fighting the disease, submitting to gruelling treatments that extended his life, but could not cure him.
Kay told reporters that after six years of treatment, they had decided it was time to stop and let Reece be as comfortable as possible for the remainder of his life. “The whole family was in agreement; it would be unfair on him to continue trying to treat him. I had to know when enough was enough,” she told the media.
Reece’s story goes to the heart of one of the most controversial and sensitive issues in oncology – the question of palliative chemotherapy; that is, treatment provided to patients in end-stage cancer to relieve symptoms and extend life without hope of a cure. But there is an issue of whether patients are properly informed and educated about this choice.
“So many patients have palliative chemotherapy, thinking and hoping it is going to cure them. So many can’t accept that it is really just buying them time,” says social worker, Caron Majewski from GVI Oncology, an ICON-affiliated oncology practice.
Now new research is indicating that palliative chemotherapy might be doing more harm than good. The study published in July 2015 in the JAMA journal by researchers at the Centre for Research on End-of-Life Care and the Irving Sherwood Wright Professor in Geriatrics at Weill Cornell Medical College, New York City, found that chemotherapy did not improve quality of life in terminally ill patients and, in fact, made it worse. There was also no benefit to overall survival for the 661 patients with progressive metastatic cancer who were involved in the study.
Another recent study by doctors at the Dana-Farber Cancer Institute in the US revealed that patients who received chemotherapy towards the end of their life were more likely to die in a hospital intensive care unit instead of at home, which was their preference. They were also more likely to be placed on a ventilator.
The study showed that only 65% of terminally ill cancer patients who chose to continue having chemotherapy died in their preferred place, compared to 80% who chose to stop treatment.
Such findings should give oncologists pause, says SA’s Dr Margie Venter.
“The biggest hurdle in all of this, I think, is this thing called hope. Patients insist on it, they Google it and they believe in it … Hope is not, however, what the terminal cancer patient needs,” says Dr Venter, an oncologist who says that one of the most difficult things she ever had to do was watch her own father die of cancer (read the full article in a recent ICON newsletter).
Dr Venter said that much has been said and written about how doctors, who have the full benefit of knowledge about the limits of medication, will often choose differently for themselves than they would for their patients. And that they should rather make sure that their patients are given the best information to make their own choices.
It’s not only doctors who are faced with questions around palliative care – oncology nurses are in the frontline when it comes to rolling out aggressive treatments and may be put in uncomfortable positions when it is obvious that patients are being encouraged by their families not to give up hope and have false expectations of being cured.
Oncology nurse, Theola Potgieter studied this in her master’s research, which she presented at the recent SASCRO/SASMO Oncology Conference 2015. Potgieter said palliative chemotherapy represented an ethical dilemma – of treating or not treating.
She added that although palliative chemotherapy did work for some patients, offering a better quality of life and a relief from pain and symptoms of cancer, many did suffer from the side effects of treatment.
Oncologist and Clinical Executive at ICON, Dr Lee-Ann Jones says the essence of the problem is that the focus needs to be not on whether patients want treatment or not, but what is important to them under the circumstances and how informed and educated they are about what treatment entails. Patients need to have a clear understanding of the goals of treatment and need to be told what can realistically be achieved with chemotherapy, she says.
“A lot of good work has been done in South Africa around palliative care but more needs to be done, said Dr Jones. “ICON recognises these issues, and over the past few years, has focused on creating access to and improving the quality of end-of-life care.” For instance, ICON promotes the appointment of social workers at ICON-affiliated oncology practices to provide counselling and guidance of cancer patients. They also help to arrange suitable facilities for patients and ensure that they fully understand the implications of treatment and are able to make educated decisions about the course of treatment.
She adds, “The network’s goal is to provide quality cancer care to as many patients as possible and it promotes initiatives to care for the patient’s dignity and individual wishes regarding treatment and palliative care. This also includes setting up proper channels, like social workers, to ensure patients receive emotional and psychological support and have access to the right information to help them make an informed decision.”