Fewer than half of NHS patients who were in their last hours or days were told that they were dying by hospital staff, according to a critical report from the Royal College of Physicians (RCP), while a significant number of families and relatives are left feeling they have no emotional support.
The report also highlights the continued lack of specialist palliative care at weekends, 10 years on from Nice recommendations that it should be offered seven days a week.
Complaints by families that dying relatives were not given fluids were one of the chief spurs to an investigation and later withdrawal of the Liverpool Care Pathway – a protocol intended to help people to die well. The RCP audit, which included some who were on the Pathway and others who were not, found that 59% of patients were assessed to see whether they needed fluids through a drip – but conversations about thirst were held with only 17% of patients and 36% of relatives and friends.
The report, which investigated 6,580 deaths in 149 hospitals during May last year, concludes that wide-scale improvements are needed to ensure that care and support for the dying is consistently good.
Half of those dying spend their last days in a hospital, but the RCP’s inquiry suggests some hospitals are a far better place in which to die than others.
“The fundamental problem is about whether this is a national priority and whether this is an NHS priority,” said Dr Kevin Stewart, chair of the RCP’s audit steering group. “We don’t think this area has been given enough prominence.”
According to the findings, doctors and nurses had recognised that most of the patients (87%) were in the last days of their life, but talked about it with less than half (48%) of those who were considered capable of having the discussion. In 93% of cases, however, they told relatives, on average 31 hours before the death.
Most patients were prescribed medication when they needed it for the five key symptoms experienced at the end of life – pain, agitation, noisy breathing, difficulty breathing and nausea and vomiting. Not all needed the drugs, but in the final 24 hours 44% were given pain relief and 17% medication to help with shortness of breath.
Three-quarters of the 858 bereaved family members questioned felt they were involved in decisions about the care and treatment of their dying relative – but a quarter did not and 37% thought the emotional support given to them by the healthcare team was only fair or poor.
The report also found there was very little training for hospital staff in the care of the dying, in spite of national recommendations -– it was mandatory for doctors in only 19% of Trusts and for nurses in 28%. Almost half (47%) of Trusts did not have a named board member with responsibility for care of the dying.
“A core job of any hospital is to care for the dying, yet this audit shows this care is still not being prioritised,” said Dr David Brooks, president of the Association for Palliative Medicine (APM).
“Ten years on from Nice recommending that specialist medical and nursing services should be available seven days a week in palliative care, only a fifth of hospitals are in a position to provide this level of care.”
In the light of the Francis Inquiry and the “More Care Less Pathway” report by Lady Julia Neuberger into the Liverpool Care Pathway, “we find this very troubling”, said Brooks.
“Although we all face dying at some point, there isn’t adequate training and access to specialist support in the majority of hospitals to ensure all dying patients receive the care they deserve whenever they need it,” he added.
“It should be a basic entitlement for a dying person to have high quality, compassionate end of life care. This requires those caring for them to have adequate basic training and access to specialist support when needed, irrespective of where they are in the country.”
Dr Stewart said that although some aspects of care are good in hospitals in England, “I am deeply concerned that some hospitals are falling short of the excellent care that should be provided to both dying people and those important to them. In particular, communication with patients and their families is generally poor. It is disappointing that hospitals don’t seem to recognise this as an important issue, not just for those experiencing this in their own lives, but for the wider public.
“Everyone wants to know that if they are in the same situation, their needs and those of their families, friends and those important to them will be met, with clinically appropriate treatment, sensitivity and compassion.”
Professor John Ellershaw, director of the Marie Curie Palliative Care Institute in Liverpool, said: “It is unacceptable in the current day and age that hospitals are failing patients, and their families, in the care they receive at the end of their life. Too many patients are dying badly in our hospitals when we know how to care for them well.”
Richard Berman, a consultant in palliative care medicine at the Christie Hospital in Manchester, knows his patients are going to die. They have terminal cancer. But when they are in their last days of life, he will tell them only as much as they want.
“It’s not something that you have to let everybody know. The better way of putting it is that the patient should be given the opportunity to learn about what is happening to them,” he said.
He – or someone else on the palliative care team – will ask a broad question in as sesnsitive way as possible, such as “How do you think things are going?”. The patient might respond, “I’m not sure they are going very well”, which gives the doctor the chance to ask, “Would you like me to explain more about what’s going on?”.
It’s a step by step process, said Berman. “There’s never the bombshell question that they are not expecting,” he said. “Not every patient wants to hear more – in which case, the conversation stops there.
It’s difficult to have hard and fast rules about how you do this,” said Berman. “Everyone is different and has a different personality and different culture and background. There should be a very flexible approach.”
Even some people who do want open and frank discussions can get upset, “but the majority know anyway that things weren’t going so well and just want confirmation of that”.
“Sometimes patients are poorly or may become poorly quickly and you may miss the opportunity to have these discussions.” Conversations with family and friends and support for them are also critical. “This is a very sensitive, distressing and difficult time for them. They need to be kept involved in discussions and up to date with what is going on,” he said. At the Christie, they really get few complaints, but “emotions run high. If relatives are distressed and angry and upset, the way forward is to sit them down and explore why. Often it is something that is fairly easily resolvable. It is all about sensitive and open communictaion.”