Care for people dying in hospitals: the data behind the audit results


A new audit on the provision of palliative care in hospitals has found significant variations in the standard of care in hospitals across England. Get the data behind the results

Around half of all deaths in England happen in hospitals
Around half of all deaths in England happen in hospitals, according to the ONS. 

There is a “significant variation in the standard of care for people dying in hospitals” across England, according to the results of a new audit which calls for ‘widescale improvements’ in end of life care.

Health Editor, Sarah Boseley writes:

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.

While every patient has different needs, and some will need more pain relief than others for example, there should be no variation in the quality and provision of services, or training in the care of people dying in hospitals. The audit shows that major improvements need to be made to ensure better care for dying people, and better support for their families, carers, friends and those important to them.

Around half of all deaths in England happen in hospitals according to the Office for National Statistics (ONS). The audit found that despite longstanding national recommendations from the National Institute for Health and Care excellence (Nice), only 21% of hospital sites had access to face-to-face palliative care services seven days per week. 73% provided face-to-face palliative care services on weekdays.

Only 28% of trusts had systems in place for mandatory training for nurses in care of the dying and only 19% for doctors. The audit recorded that 82% of trusts provided some form of training in the previous year, while 18% had not provided any. Almost half (47%) of Trusts did not have a named board member with responsibility for care of the dying.

It also found that 87% of patients had documented recognition that they were in the last hours or days of life, but discussion with patients was only documented in only less than half (46%) of those thought capable of discussing this. Communication with families and friends was recorded in 93% of cases and on average, these discussions occurred 31 hours prior to death.

27% of the participating trusts undertook a local survey of bereaved relatives: of those completing the questionnaire, 76% reported being very or fairly involved in decisions about care and treatment of their family member. Almost a quarter, however, did not feel they were involved in decisions at all.

63% of respondents said that the overall level of emotional support given to them by the healthcare team was good or excellent, while 37% thought it was fair or poor. Overall, 76% said they felt adequately supported during the patient’s last two days of life, almost a quarter did not.

Other key findings from the audit are below:

  • Only 21% of patients capable of having the conversation were asked about their spiritual needs, and only 25% of relatives/carers asked about their own needs
  • Most patients (63-81%) had medication prescribed ‘as required’ for the five key symptoms often experienced near the end of life: pain, agitation, noisy breathing, difficulty in breathing, nausea and vomiting. Not all patients need the medication and in the last 24 hours of life 44% received pain relief and 17% medication for shortness of breath
  • 59% of patients were clinically assessed to see if they needed artificial hydration, but discussions with the patient was only recorded with 17% of patients capable of discussing it. The situation was discussed with more than twice as many (36%) relatives and friends. Artificial hydration was in place for 29% of patients at the time of death
  • 45% of patients were clinically assessed to see if they needed artificial nutrition, but discussions with the patient was only recorded with 17% of patients capable of having the conversation. The situation was discussed with 29% of relatives and friend. Artificial nutrition was in place for 7% of patients at the time of death
  • Only 47% of Trusts reported having a formal structured process in place to capture the views of bereaved relatives or friends prior to this audit

What did the audit assess?

The new audit evaluated:

  • The quality of care received directly by 6,580 people who died in 149 hospitals in England between 1 May and 31 May 2013. This was done by reviewing the case notes of a sample of patients and is not the total number of people who died in hospital during this time. The audit only covered expected deaths
  • Results from questionnaires completed by 858 bereaved relatives or friends, asking about the treatment of their relative, their involvement in decision making, and the support available to them. The questionnaire was distributed by some hospitals involved in the audit, and the results were aggregated nationally
  • The organisation of care including availability of palliative care services, numbers of staff, training, and responsibilities for care.

The table below shows the results of only three of the clinical audit key performance indicators (KPIs) used in the NCDAH audit. You can see the information by hospital trust, they are listed in alphabetical order. You can find full table of the results including both clinical and organisational KPIs results by hospital trust in the downloadable spreadsheet.

End of life care requires ‘widescale improvements’, report says


Royal College of Physicians investigation shows palliative care differs across hospitals with few trusts offering adequate training
NHS end of life care
The report highlights the continued lack of specialist palliative care at weekends, ten years on from recommendations that it be offered seven days a week. 

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.”

‘Weight is healthy’ study criticised.


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What is a healthy weight?

 

A study which suggests being overweight can lead to a longer life has caused controversy among obesity experts.

One labelled the findings a “pile of rubbish” while another said it was a “horrific message” to put out.

The research, in the Journal of the American Medical Association, suggested the overweight were less likely to die prematurely than people with a “healthy” weight.

Being underweight or severely obese did cut life expectancy.

The researchers at the US National Centre for Health Statistics looked at 97 studies involving nearly 2.9 million people to compare death rates with Body Mass Index (BMI) – a way of measuring obesity using a person’s weight and height.

A healthy BMI is considered to be above 18.5 and below 25. However, overweight people (with a BMI between 25 and 30) were 6% less likely to die early than those considered to have a healthy weight, the study reports.

Have you ever seen a 100-year-old human being who is overweight? The answer is you probably haven’t.”

Prof John Wass Royal College of Physicians

Mildly obese people (BMI between 30 and 35) were no more likely to die prematurely than people with a healthy BMI.

The study said being “overweight was associated with significantly lower all-cause mortality”.

Possible explanations included overweight people getting medical treatment, such as to control blood pressure, more quickly or the extra weight helping people survive being severely ill in hospital.

However, the researchers point out they looked only at deaths and not years spent free of ill-health.

Unconvinced

On Tuesday, the Royal College of Physicians called for the UK to rethink the way it tackles obesity.

Prof John Wass, vice-president of the college, said: “Have you ever seen a 100-year-old human being who is overweight? The answer is you probably haven’t.”

He said the largest people will have died years before and pointed to health problems and higher levels of Type 2 diabetes.

“Huge pieces of evidence go against this, countless other studies point in the other direction.”

Other experts criticised the research methods.

“Some portion of those thin people are actually sick, and sick people tend to die sooner,” according to Donald Berry, from the University of Texas

Dr Walter Willett, from the Harvard School of Public Health said: “This is an even greater pile of rubbish” than a study conducted by the same group in 2005.

Tam Fry, from the National Obesity Forum in the UK, said: “It’s a horrific message to put out at this particular time.

“We shouldn’t take it for granted that we can cancel the gym, that we can eat ourselves to death with black forest gateaux.”

Source:BBC