Too few cancer patients are getting end-of-life care

Half of all patients diagnosed with cancer in the UK still die of the disease

The repeated cycles of treatment and cumulative side effects can often have a detrimental impact upon quality of life (Shutterstock)

Over the past 20 years, there has been a rapid advancement in the treatment of cancer, leading to impressive survival rates for many and a general perception that we’re getting this cancer business cracked. But the stark reality is that half of all patients diagnosed with cancer in the UK still die of the disease.

The vast majority of research funding is directed towards developing new treatment options or towards strategies to improve early diagnosis – with less than 0.3 per cent of the £500m spent on cancer research allocated to palliative (end-of-life) care.

Typically, patients who require end-of-life care still receive anticancer treatment. Through both routine care and participation in clinical trials, patients and their oncologists are united in the common goal of preserving life for as long as possible.

But the repeated cycles of treatment and cumulative side effects can often have a detrimental impact upon the quality of a person’s life, with minimal benefits in terms of extending survival.

Unlike treatment, palliative care aims to help patients live as well as possible for as long as possible. This is done by focusing on the effective management of symptoms (both physical and psychological) rather than curing the disease. And research has shown that for patients with advanced cancer it can have significant benefits in terms of quality of life for patients – including in some cases improved survival.

But as our recent research found, a large number of patients who die from cancer are not referred to specialist palliative care services at all.

Quality of life

Research into the early integration of palliative care for cancer patients has mainly been undertaken in the US and Canada – and has found that palliative care should ideally begin at least three to six months before death.

In our recent study, which was funded by Yorkshire Cancer Research, we set out to explore the average duration of palliative care received by 2,500 patients who died from cancer.

We found that about one third of the patients who died from cancer were not referred to specialist palliative care services at all. Among them may have been people who were getting good quality, end-of-life care from their GP or oncology team – but it’s likely there were others who were not receiving any adequate support or care at the end of their lives.

We also found that, on average, patients who died from cancer who did get access to palliative care received just seven weeks of it.

Our analysis showed that among the two thirds who were referred to specialist services, even short periods of palliative care brought benefits.

Two weeks of palliative care was associated with a greater chance of avoiding dying in hospital. With four weeks of palliative care, the benefits stacked up further. It meant patients were also more likely to avoid being admitted to hospital in an emergency and they were more likely to get access to more powerful pain relief.

Difficult conversations

These findings show that more needs to be done to help patients who are dying from cancer. But this can only happen if oncologists and their patients have timely conversations about end of life care – and these conversations can be challenging.

As part of our research, we also asked patients and oncologists to reflect on conversations where they discussed palliative care. Patients told us they felt the term palliative care was synonymous with death or they didn’t fully understand what it was. The oncologists explained how it can feel like they are failing, or letting their patients down and abandoning them by raising the subject of palliative care services.

A further barrier to having the conversation at the right time is that to some extent it is reliant on accurate prognostication. And this can be difficult, because patients’ understanding of their prognosis is often inaccurate. A recent study of 1,400 patients with advanced cancer who were receiving palliative care found that 55 per cent believed, incorrectly, that their cancer was curable.

There is also more than 40 years of research evidence that shows how difficult it is for doctors to accurately predict how long a patient has left to live, typically overestimating survival.

Research has found that the longer a doctor has known their patient, the more likely they are to be overoptimistic about their likely survival.

Oncologists are treating their patients for longer than ever before – it is not unusual to treat a patient with incurable breast cancer for seven to 10 years. And as patients show variable responses to the increasing treatment options, the odds are stacked heavily against doctors being able to master the elusive art of accurate prognosis any time soon.

To try to improve conversations and ideas around palliative care, we are now undertaking another study that aims to improve patient understanding of palliative care and equip doctors with the skills and confidence to start these challenging but crucial conversations earlier with their patients. And given that nearly half of the UK population will get cancer in their lifetime, and half of those will die of the disease, it’s clear these improved conversations can’t come quickly enough.

Lucy Ziegler is a senior research fellow in palliative care at the University of Leeds. This article first appeared on The Conversation (theconversation.com)