The end of the road: trying to unpick the problems with end of life care

As part of a number of articles looking at end of life, and with renewed focus on the issue including through the recent Independent Taskforce report and updated NICE guidance, we cast an eye over some of the diverse challenges facing people with incurable disease, and the doctors who care for them.

“Will it kill me?” was one of Larry Rees’s first thoughts when he was diagnosed with oesophageal cancer, just weeks after his 50^th birthday

And while we all may be aware that our time in this world is limited, most of us would rather not think about it.

But one day we will need to make certain decisions about our death – and unfortunately for some, those decisions need to be made sooner rather than later.

Larry had extensive surgery to get rid of the oesophageal cancer, and, after five years, was given the ‘all clear’.

But two and a half years later cancer struck again – this time advanced pancreatic cancer. Another gruelling operation, and six months of chemotherapy later, he again thought he was on the road to recovery.

But then his doctor told him that the cancer had spread to his liver.

“I knew instantly that this was a death sentence, but I was certainly not ready to accept it,” he said.

Accepting one’s own mortality is never easy, and planning for the inevitable can be complicated.

But does everyone with a terminal illness get the support they need? Or should more be done to help people at the end of their lives?

At the end of the line

According to a 2005 review in the BMJ, while there are always uncertainties over the timeline for terminal cancer – weeks, months or in many cases, years – the sequence of events, or ‘illness trajectory’ is relatively predictable. Physical health declines in stages, which can allow for practical planning and what the article termed a “good death”.

But what constitutes a “good death” will vary between individuals – and here we encounter the first sign that things aren’t quite right.

According to the National Survey of Bereaved People, while nearly three quarters of people say they would prefer to die at home, in reality over half of us will spend our last moments in a hospital bed.

The reason for this disconnect between people’s wishes and reality is complex. But it can start with a failure to communicate.

Radio Silence

“No one has ever talked to me about end of life care!” said Larry.

Since he was first diagnosed with cancer, nobody has ever asked Larry how he would like to die, or where he would like to die.

“I have found that doctors are very uncomfortable with this subject. The only person that has allowed me to discuss this openly is my wife.”

“I think it would be enormously beneficial if someone could have a proper conversation about what happens when you become terminally ill.”

According to evidence given to MPs by the charity Compassion in Dying:

When patients are not informed about their prognosis and are not asked about their care and medical treatment preferences, they are denied the right to participate in decisions and might not have the death they want.

Talking to the BMJ, Timothy Quill, a specialist in end-of-life care, suggested that these conversations should happen at the start of treatment – yet physicians often postpone or avoid the conversation, which may mean the patient does not have enough time to express their wishes.

And this can have a knock on effect.

In 2012, a US study looked at more than 1,000 people with stage 4 lung or bowel cancer. It found that, when doctors delayed the end of life conversation, people were more likely to receive aggressive treatment in the last two weeks of life, and have more intensive hospital care in the last month of life.

This suggests that, when physicians delay talking about end of life, “[they] tend to go to the default – which is to order very aggressive treatments,” Quill told the BMJ.

And this can jeopardise the patient’s ability to have the “good death” they want.

Everything and the kitchen sink

So-called ‘palliative’ chemotherapy or radiotherapy is given with the intention of extending life or relieving symptoms, rather than curing. And for many, these treatments can be helpful.

But there’s evidence from the US (which admittedly has a different healthcare system to ours) that aggressive treatment at the end of life might come with downsides as well as upsides.

For example, research published in January this year looked at more than 39,000 US people who had died following a diagnosis of cancer. Half of them had palliative radiotherapy in the last six months of life. And those that did, also tended to have more emergency visits, radiographic exams and physician visits, in comparison to those who did not receive palliative radiotherapy.

Another US study from 2014 compared people with terminal cancer who received palliative chemotherapy in the last months of life to those who didn’t. Those who had chemotherapy were seven times more likely to receive intensive medical interventions near death, such as CPR and feeding tubes. And they were 15 per cent less likely to die in their preferred place of death, and about five times more likely to die in an intensive care unit.

But one of the more controversial findings was that the aggressive treatment near the end of life didn’t significantly prolong survival.

We found no significant difference in overall survival between patients who were receiving palliative chemotherapy and those who were not.

“We found no significant difference in overall survival between patients who were receiving palliative chemotherapy at study enrollment, and those who were not,” the researchers wrote.

Despite this, the study found that between 20 and 50 per cent of US people with incurable cancer were still receiving some kind of aggressive treatment within 30 days of their death.

As we’ve said, these are US studies. So what’s the situation like in this country?

Recent data from the Systemic Anti-Cancer Therapy dataset – which collects data on chemotherapy use across England – suggest that, of all cancer people receiving chemotherapy for whom there are data, five in every 100 (five per cent) received chemo in their last 30 days of life, four of whom were treated ‘with palliative intent’ – suggesting that this isn’t an issue confined to the US healthcare system. So we are starting to understand the UK context, but much more work is needed to unpick this further.

Of course, many different aspects influence the decision to continue treatment. Often it’s down to a patient’s personal choice – a hugely important factor that shouldn’t be ignored. And this is the case with Larry, who is on one of the most aggressive chemotherapy treatments.

“It obliterates me,” said Larry who has had to suffer the numerous side effects that comes with his treatment including permanent neuropathy – nerve damage that causes a feeling of numbness.

“If you look at it in isolation you may think, ‘why bother doing that?’. But the point is I’ve lived seven months since I got my terminal diagnosis. Without it I would have been dead in two months,” he said, referring to the average survival time for people with advanced pancreatic cancer.

But aside from issues around communication, patient choice and the rest, there’s a more depressingly matter-of-fact reason why many terminally ill people still receive aggressive palliative treatment: it’s incredibly hard to determine exactly when someone is entering those final stages.

Doctors aren’t psychic

“Predicting death is hard. There is a very wide margin of error because the biology is complex and unpredictable,” said Professor Peter Johnson, Cancer Research UK’s chief clinician. “It’s not an exact science.”

However, research has started to tentatively address this issue.

For example, a small study recently outlined eight signs of impending death in people with advanced cancer. Unfortunately these signs were only predictive of someone was going to die within three days.

“As this research demonstrates, when critical life signs and bodily functions are shutting down, it becomes very clear that someone does not have very long, and that death is imminent,” said Martin Ledwick, Cancer Research UK’s information nurse manager.

But as it stands, there’s no scientific method to accurately predict when a terminally ill patient is about to die. Doctors are essentially making a highly educated guess, which makes determining the course of treatment tricky.

“Although there are often broad figures based on average survival times for cancers at different stages, which can help to put time scales in perspective, these cannot say exactly how long an individual patient will have,” Ledwick said.

And it’s unlikely that there will ever be a way to predict with certainty how long someone has, due to the number of factors that can affect how cancers progress.

This is not very helpful for the peoples’ personal planning. “I don’t know if I’m going to live six months or two years!” Larry said.

Fixing the cracks

So how can we fix this? How can we ensure that people are dying the way they want to, and with the best quality of life?

Growing evidence is  beginning to show the effectiveness of properly considered, planned and integrated, specialist palliative care. This focuses on managing symptoms such as pain, nausea or fatigue, providing psychological and social support and assistance with decision making – rather than aggressive chemotherapy – and radiotherapy.

And it doesn’t just improve wellbeing – it can also extend life.

In 2010, a study randomly assigned 151 US people with advanced lung cancer to two groups. Half received specialist palliative care from when they were first diagnosed, on top of their existing treatments. The other half received standard care.

The results showed that people given early specialist palliative care were less likely to have depressive symptoms, less likely to have aggressive care and – most strikingly – they survived on average three months longer (12 months versus nine months).

Another notable study by researchers in Canada found that people who were assigned to specialised palliative care teams not only had improved symptom control and better quality of life. They also had fewer emergency department visits, and were less likely to die in hospital.

But again this is data from North America, which has a very different ‘two-step’ model of care: first they treat with the aim of curing, and if that doesn’t work they switch to palliative care.

Currently, UK carers are advised to follow the “Five Priorities of Care” and specialist palliative care is often given in a more integrated way. For example, many hospitals in the UK now have specialist palliative care teams, who work alongside colleagues as a patient is given chemotherapy or radiotherapy.

And now we get to one of the biggest issues with palliative care in the UK. According to a recent Marie Curie report, one third of UK cancer people don’t have access to specialised palliative care services. And this, they say, primarily comes down to a lack of funding for these services.

Furthermore, in January 2015, Dr Kevin Stewart, clinical director at Royal College of Physicians, told a Select Committee of MPs that 20 per cent of trusts didn’t offer any training in end of life care, and only 20 per cent made training in end of life care mandatory.

And this lack of training was reflected in a Dying Matters pilot study, which found that 60 per cent of GPs rated themselves either ‘not confident’ or ‘not very confident’ in initiating conversations about end of life.

Dr Stewart stressed the importance of doctors, nurses and other health workers being better trained so they are able to have end of life conversations.

As well as funding for services themselves, others think more research in this area would also help.

“The last weeks of life are such an important time for patients and their carers,” said Dr Thomas Osborne, a London-based palliative care specialist. “So to help people at this critical point in their lives we need good quality research to inform how we should deliver the best care possible.”

Thankfully, there’s a renewed focus on these matters, as highlighted in the recent report from the Independent Cancer Taskforce.

The report acknowledged many of the issues facing palliative and end of life care: “Care should be coordinated and planned to ensure [patients] die in the place and in the way they have chosen. Their families and carers should have the opportunity to prepare for death and should have access to practical and emotional support.”

As such they put forward several recommendations to help make sure people are getting the care they deserve. In addition to endorsing all the recommendations in an independent Government review – the Choice Review – they said:

• That NHS England must develop a way to determine and account for all of a patients’ needs when first diagnosed
• The NHS should develop a way to measure quality of end-of-life care, and incorporate this into wider health service standards to ensure things improve.
• Further research is needed into the benefit of early access to palliative services.

And just recently, the National Institute of Health and Care Excellence published new guidance on end-of-life care, focusing on providing personalised care, good communication and shared decision-making.

But when all is said and done, even with a system working the best it can, the decisions are, ultimately, up to the patient.

“All [the doctors] can do is buy you time,” said Larry, “so I’m putting up with the nasty bits, and doing what I can to enjoy the good bits”.

Misha

 

• We can’t control everything about how and where we die.  But we can let those we love and our medical teams know what are wishes are.  We can also help our medical teams and relatives know about how we want to be treated  through advanced care planning.  Giving someone you trust the power to act on your behalf in situations where you might become unable to express your wishes, lasting power of attorney can also give you reassurance.  For more information on these options and what they can do for you feel free to contact our Nurses (0808 800 4040) or visit the Compassion In Dying website.