'Dad was screaming in pain . . . he had a wicked death'

Published: 17/11/2005 Volume 115 No. 5982 Page 32 33 34

Norfolk county council's interview-based report on death and dying makes difficult reading. And, although it highlights widespread palliative care failings, encouraging progress is being made. Daloni Carlisle reports

It takes a strong stomach to read Norfolk county council's recent report on death and dying. It is not an inquiry into a tragedy or a mistake where gruesome reading is the norm; it is a picture of the day-to-day experience of death and dying by local people. Much of it is not pretty.

Take this from the wife of a man died in a sixbed ward in an acute hospital: 'Everyone on that ward was forced to share my husband's death.' Or this, from the daughter of a man admitted to a care home for the last days of his life. 'Dad was screaming in pain but they treated him like all the other patients. He did not have senile dementia; he was alert and fully aware. He was punching the air with pain... my dad had a wicked death.' Here and there are glimpses of the humanity and kindness that accompany skilled health and social care to make a good death.

There is the hospital nurse who stayed with a woman as she held her recently deceased husband's hand and, when she left, told her: 'We will love him for you now.' As the woman said: 'That was the most wonderful thing that anybody could have said and I will always be grateful to her for that.' '[The report] can make uncomfortable reading, ' says Maggie Parsons, lead nurse for Norfolk and Waveney cancer network and a member of the project team that produced it. 'But even though it is quite depressing it is really useful.' The belief in Norfolk is that this report is unique. The council's overview and scrutiny committee commissioned it in 2004. Charged with examining health services in their local area and with the power to ask questions of those in charge, they opted to look at something that affects all of us: death and dying.

'All of us have been touched by death and bereavement and one day will, of course, experience our own death, ' says Jill Caldwell, a former county councillor who chaired the project until her retirement in May 2005.

Council OSC manager Chris Coath put together a project proposal and applied to the Centre for Public Scrutiny, which awarded£20,000 for a study to go ahead. The OSC commissioned experienced health and social care researcher Sue Spooner to carry out the work and brought on board the lead professionals, securing an additional£4,200 funding from the cancer care network in the process. The results were published in September 2005.

In addition to Ms Caldwell, the project board included a primary care trust chief executive, a GP, Ms Parsons from the cancer network and the head of adult social services.

It is the sort of work that many in the NHS would love to carry out, but do not have the time or money. Mark Taylor, chief executive of Broadland PCT and a project board member, says: 'We had no input into the subject area at all. It was something that the OSC decided on. But having made that decision they were very good at engaging with us (in the health service) very early on and as a result we have a very useful piece of work.' The services in Norfolk and Waveney warrant close examination. Despite having a disproportionately aged population compared to the rest of the country, the area has less palliative care provision than might be expected.

According to two needs assessments cited in the report, there are 20 specialist palliative care beds where there should be 60; there is no specialist palliative care consultant in west Norfolk's Queen Elizabeth Hospital and only 3.5 specialist nurses where there should be five.

It is not all bad news, though. Norfolk and Waveney cancer network has embraced National Institute for Health and Clinical Excellence guidelines on palliative care for adults, using£730,000 from the palliative care investment plan. The Liverpool care pathway for the dying and the gold standards framework - both endorsed by the Department of Health's cancer national service framework - is slowly being implemented.

The research base The report's work was based on the World Health Organisation's 2002 definition of palliative care, namely 'an approach that improves the quality of life of patients and their families facing lifethreatening illness through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems'.

The research for the report involved a questionnaire for the public on attitudes, expectations and experiences of death and dying.

The authors sent out 1,100 copies via the citizens' panel to ensure a representative sample across the patch and received 524 returns. 'That is a larger sample than many national studies manage, ' says Ms Parsons.

This was supplemented by 46 interviews with members of the public who were ill themselves or had experienced the death of a loved one; five focus group discussions; and more than 65 indepth interviews with professionals and other health and social care workers.

The views of the public - 160 of whom had had specific experience of end-of-life care - were pretty consistent (see survey results box, page 33).

They wanted to die at home, unless they were going to be a burden on their families. They wanted choice about where to die and a named person to co-ordinate care.

'The questionnaire and the results are one of the biggest strengths of this report, ' says Mr Taylor. 'It gives the whole thing a clear legitimacy.' The in-depth interviews provide the qualitative element of the report, and this is where things get uncomfortable. While the specialist services received high praise, it was only available to people with cancer and only a minority of them. People with non-malignant diseases such as motor neurone disease often received no palliative care.

Interviewees told of patients with complex medical needs staying in acute beds for months at a time because there were no suitable palliative care beds elsewhere. Standards of palliative care fell far short of acceptable levels in nursing homes.

Similarly, they gave examples of dedicated and hard-working teams and individuals that enabled some patients to have a good death; there were examples, too, of individuals who provided excellent care but were hampered by poor knowledge of services, bad communication and lack of processes to enable systematic access to services.

Recommendations

The report makes four pages of recommendations for more and better services, with some specific timeframes attached. For example, it says that services need to be integrated to overcome lack of co-ordination; the OSC expects to see a joint health and social services strategic lead in place by 2006.

Neither Mr Taylor nor Ms Parsons feel threatened by this. The NHS and council's adult social services have yet to submit their formal response and action plan to the OSC - it is due in December - but they feel positive and excited.

'We know we do not deliver enough options around end-of-life care, especially in parts of the county where we are not able to provide support at home, ' says Mr Taylor. 'We do tend to get too hooked into the specialist services side when most people will be cared for in non-specialist settings. This report reminds of that.' Many of the recommendations are relatively cheap to implement, he adds. 'One of the key recommendations is implementing the Liverpool care pathway for the dying in all areas. We are already doing that with most practices, and it is not a question of vast resources but one of willingness.' Ms Parsons adds: 'The biggest thing for me is the inconsistency of care. Just when families are facing possibly the worst time in their lives it is not OK for some people to get excellent care and others to get none. We need minimum quality standards and a real look at what we provide.' The report's recommendations to improve and integrate commissioning are also very powerful, she feels. 'Genereally, there seems to be a complete lack of recognition that palliative care is provided across the NHS, social services and the voluntary sector. It is commissioned entirely through health and cancer services, but it needs to have everybody involved.' Work is already under way to address the training issues raised. 'We have got some money from the local workforce development confederation to carry out a training needs analysis, ' says Ms Parsons.

'We will be taking the same approach as the OSC, using focus groups with carers to ask what they want around training and education and then go on to ask staff.' She expects people to identify technical skills around symptom control, but plans also to ask whether they need training in how to co-ordinate care with other sectors.

If this report does result in change it will be a vindication of the ideals behind overview and scrutiny of public services by elected members.

As Ms Parsons says: 'I know in other places It is been a very adversarial process. That is not the case here. What we have now is a completely unmodulated public view on the quality of our health services from a group of people who are quite vulnerable and are not in a position to have a strong voice. That is a very powerful thing.' .

BETTER SERVICES

IMPROVING END-OF-LIFE CARE

Improving End of Life Care is one of a number of themed papers and documents produced by the NHS Confederation as part of its response to the healthcare outside hospital white paper consultation exercise, writes Stuart Shepherd.

The briefing contains data examining current end-of-life service provision from the perspectives of professionals, service users and carers and makes recommendations for measures to be included in any forthcoming legislation.

It highlights the large number of people who still die in hospital, the weighting given to endof-life care for cancer patients and the reliance on a small and overworked number of specialist staff.

In anticipation of a significant increase in the numbers of people choosing to die at home, the confederation supports the broadening of the skills base for end-of-life care among generalist staff as a complement to continued specialist interventions.

Patient choice is promoted through a call for the standardisation of end-of-life care plans - catering for symptom control, psychological, spiritual and social care - and the extension of the hospice system.

'Your diagnosis shouldn't really affect the quality and location of the care you receive, ' says NHS Confederation deputy policy director Jo Webber.

'We have patients with long-term respiratory and neurological illnesses who are experts in their conditions.

'They should have more control over what is happening to them, how they are treated and where they die.' The paper also advocates better support for carers with distinct assessments to determine appropriate levels of information and advice on topics such as bereavement and finances. The confederation is looking to produce a further paper on the needs of carers of people with long-term conditions - to be written by a group of carers' organisations.

'The point has been made on many occasions about the cost to the NHS if informal carers stopped caring.' For access to the NHS Confederation report, visit www. good management-hsj. co. uk/ endoflife

SURVEY RESULTS

WHAT THEPUBLIC SAID

73 per cent said they had discussed their own death.

72 per cent said carers needed to be involved in treatment decisions, but 53 per cent said carers' needs were ignored when someone is dying.

74 per cent wanted to die at home.

37 per cent said dying at home would be the worst place if they became too much of a burden on their family.

63 per cent wanted more choice.

75 per cent said it was important to have a named person responsible for end-oflife care needs.

THE NATIONAL PICTURE

THE REPORT IN CONTEXT

In 2004, the government committed£50m to improving specialist palliative care services for people with life-threatening and terminal illness. A partnership group representing the NHS and voluntary sectors has allocated funding.

The 1999 cancer national service framework makes specific reference to palliative care in quality standard nine.

The gold standards framework and the Liverpool care pathway for the dying are both endorsed by the DoH as examples of good practice.

Key points

The report by Norfolk county council on death and USION dying is among the first of its kind on this topic.

Palliative care provision in Norfolk, and elsewhere, is insufficient, with none available to many of those with non-malignant diseases l There are insufficient options in end-of-life care, with too much emphasis on on specialist services.

For more information on this article go to www. goodmanagement-hsj. co. uk/endoflife