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A mutual end

How we care for those in our society who are reaching the end of their life helps define our degree of civilization. A mutual approach to healthcare recognises that caring for those who are dying is a duty which is founded on our respect for the contributions that each person has made over the course of their life. A good death is something which is not simply an aspiration. It is a right that we must uphold.

Palliative care

Last year, 8,000 people died in Lothian. For most people, death results from a chronic illness and comes at the end of a period of ill-health. For many people therefore death is neither unexpected nor surprising. We understand this phase of illness for some patients with cancer who live with the disease then enter a period of rapidly progressive decline, but struggle to recognise it for people with many other illnesses which may ultimately end in the person dying.

One way that some people find useful, when thinking about the end of life, is to consider different 'trajectories' of illness, or of dying (see Figure 1). We are used to thinking about palliative care and anticipating dying when someone is clearly on the 'cancer' trajectory, and may even recognise this process in some other illnesses (for example, rapidly progressive forms of Motor Neurone Disease). It is more difficult to understand how to provide palliative care for someone with advanced heart failure who has repeated admissions to hospital due to episodes of severe ill-health but who then improves and has periods where they stay reasonably stable (the 'organ failure' trajectory). It is even harder to recognise when someone is 'dying' after they have been frail or developed worsening dementia over a period of five or ten years.

[ Box 1 ] Case Study

Mrs. R is a 62 year old woman who has had diabetes for 15 years and four myocardial infarctions (heart attacks) over the last four years. She now has advanced heart failure. This leaves her breathless for most of the time. In the last year, she has had three admissions to an acute hospital with worsening breathlessness and heart failure. Each of these admissions has lasted several weeks. She is now mostly confined to her house because of her limited exercise tolerance and becomes breathless several times a day; at night she has to sleep sitting up because of her breathing. She is on a host of heart tablets and these are kept in balance by her General Practitioner, with the support of the cardiology team. The district nurses visit regularly.

Unfortunately she found her last admission to hospital difficult and, although the care had been excellent, she felt she had come home little better than before she went in. She does not wish to go into hospital again. She recognises that she will get worse in the future and, although she wishes to stay alive as long as possible, she also wants to die at home. Her daughter, with whom she lives, understands and accepts her views.

Mrs R's illness has a prognosis worse than many cancers (60% 1 year survival) but her precise length of life is impossible to predict. She is almost as likely to live six months as she is to die in a week. She will become more unwell again at some point and traditionally would be admitted to hospital for acute treatment. Is there another way for her and her care team to plan and manage her care which more closely matches her wishes and provide some form of 'palliative' care?

The challenge is for health professionals to understand how to provide the appropriate information, advice, support and care to patients with these conditions. There is an equally significant challenge to create an environment where someone is ready to hear this information and engage with a different set of decisions and plans.

Palliative Care is the change of focus, priorities and decisions about care that arise from the recognition that a patient is in this 'palliative phase' of their illness. These priorities are very individual (including some patients who will choose highly intensive medical therapy even when it has little chance of benefit) and need to be worked through carefully in each individual situation.

[ Figure 1 ] The three main trajectories of decline at the end of life

Number of deaths in each trajectory, out of the average 20 deaths each year per UK general practice list of 2000 patients

The three main trajectories of decline at the end of life

The Lothian Palliative Care Managed Clinical Network

Lothian has developed a specific Palliative Care Managed Clinical Network. This brings together health professionals, patients, carers, educators, managers, researchers and Local Authority representation to tackle some of these issues described. The network has agreed policies in all the places in Lothian where patients receive care and has introduced guidelines and improvement tools. These networks produce better coordinated care to the benefit of patients and professionals.

The Gold Standards Framework (Scotland)2 allows GPs and district nurses to look at all the patients in their practice who may be in need of palliative care. At present 82% of GP practices in Lothian have adopted this framework. This enables them to identify a patient's needs and agree a plan of care with the patient and family. Around 50% of the patients with complex palliative care needs who are being cared for at home have additional information about their care needs lodged with the Lothian Unscheduled Care Service (LUCS) so that they can be provided with the care they need if a call is made out of hours. Additional advice and help can be accessed through the specialist palliative care services (including palliative care doctors on call). Symptoms are identified and managed using the Lothian Palliative Care Guidelines3. The Lothian Palliative Care Guidelines have been adopted by several other Health Boards in Scotland.

Patients who do not wish to be resuscitated if they collapse can have a Do Not Resuscitate notice placed in their records. Resuscitation decisions can be made and recorded using the Pan Lothian Do Not Attempt Resuscitation (DNAR) policy4, which again allows this vital information to be communicated between different healthcare settings. The Lothian DNAR policy has resulted in a significant reduction in the number of inappropriate resuscitation attempts and has been recommended for adoption throughout Scotland. These tools, systems and polices create a framework for equitable palliative care which can be applied wherever patients receive care.

Mutuality and future palliative care

Palliative care is an area where mutuality really matters. Much has been achieved in Lothian but there are still many areas for development and improvement. If palliative care is going to be available to all it is essential that there is widespread understanding that different patterns of palliative care are required for different groups of people.

The trajectories concept may help this understanding. The other significant area is the wider recognition and acceptance of dying as a natural part of life. This has been termed 'Health Promoting Palliative Care' and could be developed as another strand of health promotion policy.

[ Box 2 ] Palliative Care in Care Homes

An important minority of frail older people live in care homes. Effective palliative care is equally necessary to enable people who live in care homes to die at home.

In March 2007 seven care homes in Midlothian agreed to take part in a feasibility project to develop palliative care. The aim of the project was to optimise the organisation, proactive planning, and communication with residents, their relatives, the nursing home team, and general practitioners to increase joint working and to reduce the number of admissions to hospital in the last stages of life, with more residents dying well in their care home.

Each care home appointed 'key champions' who attended training in palliative care. and were then encouraged to cascade the training to their own staff. Robust evaluation demonstrated significant improvement in many areas of palliative care (care of the dying, control of symptoms, continuity of care, carer support). Managers recognised an increased confidence in their staff, including carers, particularly in communicating with relatives about death and dying and actually caring for a dying person. Attitudes had changed; staff became more accepting of dying and more able to recognise it.

As a result of improved discussion around end of life care, there was:

  • An increase in use of the Do Not Attempt Resuscitation (DNAR) protocol across all nursing care homes from 8 to 71%
  • An increase in explicit decision-making in end of life care across all nursing care homes from 4 to 55%
  • Fewer deaths in hospital: a reduction of around 50% (from 15% to 8%) of residents dying in hospital in the 12-months preceding the project compared to the year of the intervention
  • A reduction in the proportion of inappropriate hospital admissions by over 40%.

Key messages

  • Caring for those who are dying is a mark of a civilized society.
  • Providing equitable palliative care - irrespective of they type of care needed or where it is delivered is an essential part of good value clinical care.
  • In Lothian the Palliative Care Managed Clinical Network is developing and implementing ways of helping to maintain equality of care.
  • A new challenge will be to help create a society where dying is recognised and accepted as a natural part of life.