End of life care

Around half a million people die in England each year, of whom almost two-thirds are aged over 75. The large majority of these deaths follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia. Most deaths occur in NHS hospitals.

The pattern of deaths in relation to age profile, cause of death and place of death have changed radically over the course of the past century. One hundred years ago most people died in their own homes and acute infections were a much more common cause of death.  A far higher proportion of deaths occurred in childhood or early adult life.

With the changes in the past century, familiarity with death within society as a whole has decreased. Many people nowadays do not experience the death of someone close to them until they are well into midlife. Many have not seen a dead body, except on television. As a society we do not discuss death and dying openly.

Although individuals may have different ideas about what would, for them, constitute a ‘good death’, for many this would involve:

  • being treated as an individual, with dignity and respect;
  • being without pain and other symptoms;
  • being in familiar surroundings; and
  • being in the company of close family and/or friends.

 

Some people die as they would have wished, but many others do not. Some people experience excellent care in hospitals, hospices, care homes and in their own homes. But the reality is that many do not. Many people experience unnecessary pain and other symptoms. There are distressing reports of people not being treated with dignity and respect and many people do not die where they would choose to.

How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services.

In the past, end of life care within the NHS and social care services had a relatively low profile. Reflecting this, the quality of care delivered has been very variable. Implementation of this strategy will make a step change in access to high quality care for all people approaching the end of life. This should be irrespective of age, gender, ethnicity, religious belief, disability, sexual orientation, diagnosis or socioeconomic deprivation. High quality care should be available wherever the person may be: at home, in a care home, in hospital, in a hospice or elsewhere (National End of life Strategy, DH, 2008).

Last updated: 2012-05-10 09:33:00
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1. What are the key issues?

Raising the profile

Improving end of life care will involve working in partnership to consider how best to engage with local communities to raise the importance of end of life care. This may involve engagement with schools, faith groups, funeral directors, care homes, hospices, independent and voluntary sector providers and employers amongst others.

A public health approach will be taken to raise the profile through inititives such as compassionate communities and an End of Life Charter.

 

Strategic commissioning

As the services required by people approaching the end of life span different sectors and settings, it is vital that an integrated approach to planning, contracting and monitoring of service delivery should be taken across health and social care. All relevant provider organisations should be involved in the commissioning process.

 

Identifying people approaching the end of life

Caring for those approaching the end of life is one of the most important and rewarding areas of care. Although it is challenging and emotionally demanding, if staff have the necessary knowledge, skills and attitudes, it can also be immensely satisfying. However, many health and social care staff have had insufficient training in identifying those who are approaching the end of life, in communicating with them or in providing optimal care.

 

Care planning in advance – ‘Deciding Right’

All people approaching the end of life need to have their needs assessed, their wishes and preferences discussed and an agreed set of actions reflecting the choices they make about their care recorded in a care plan. In some cases people may want to make an advance decision to refuse treatment, should they lack capacity to make such a decision in the future. Others may want to set out more general wishes and preferences about how they are cared for and where they would wish to die. These should all be incorporated into the care plan. The care plan should be subject to review by the multidisciplinary team, the patient and carers as and when a person’s condition, or wishes, change. For greater effectiveness, the care plan should be available to all who have a legitimate reason for use (for example, out-of-hours and emergency services).

 

Co-ordination of care

Within each local health economy mechanisms need to be established to ensure that each person approaching the end of life receives co-ordinated care, in accordance with the care plan, across sectors and at all times of day and night.  This includes the development of community palliative care registers.

 

Rapid access to care

As the condition of a person may change rapidly, it is essential that services are marshalled without delay. If a person is likely to live for only a matter of weeks, days matter. If the prognosis is measured in days, hours matter. Therefore, medical, nursing and personal care and carers’ support services should be made available in the community continuously, including in care homes, sheltered and extra care housing and can be accessed without delay. It is evident that provision of continuous services can avoid unnecessary emergency admissions to hospital and can enable more people at the end of their life to live and die in the place of their choice.

 

Provision of high quality services in all locations

Commissioners will wish to review the availability and quality of end of life care services in different settings. These will include services provided in hospitals, in the community, and in care homes, sheltered and extra care housing, hospices and ambulance services.

 

Last days of life and care after death

Increasingly, the Liverpool Care Pathway (LCP), or an equivalent tool, is being adopted by those providing end of life services. The LCP, which was first developed for use with cancer patients, has now been modified successfully for use for people with other conditions. It can be used in hospitals, care homes, hospices and at home. For people who die suddenly, the care after death module is appropriate. The adoption of this tool is further supported by those hospitals who have participated in the National Care of the Dying Audit – Hospitals (NCDAH) based on the LCP.

 

Involving and supporting carers

The family, including children, close friends and informal carers of people approaching the end of life, have a vital role in the provision of care. They need to be closely involved in decision-making, with the recognition that they also have their own needs. For many this will have been the first time they have cared for someone who is dying. They need information about the likely progress of the person’s condition and information about services which are available. They may well also need practical and emotional support both during the person’s life and after bereavement. Carers already have the right to have their own needs assessed and reviewed and to have a carer’s care plan.

 

Education and training and continuing professional development

Ensuring that health and social care staff at all levels have the necessary knowledge, skills and attitudes related to care for the dying will be critical to the success of improving end of life care.

 

Measurement and research

Good information on end of life care is needed by patients, carers, commissioners, clinicians, service providers, researchers and policy makers. Each group will have somewhat different questions to ask and therefore different priorities for information.  This could include tools such ‘family’s voice’ which has been used in community and hospital settings.

Last updated: 09/05/12

2. What commissioning priorities are recommended?

2012/01

Reduce inequalities and improve identification through de-stigmatising death and dying and encouraging healthcare professionals and people with end of life care needs, their families and carers to engage in open conversations.

 

2012/02

Improve the quality of care including care after death, through holistic assessments and timely interventions in the right place by a knowledgeable, caring and competent workforce.

 

2012/03

Increase choice and personalisation through care planning and advance care planning, including advance statements and advance decisions to refuse treatment and provision of resources that enable these choices to be achieved.

 

2012/04

Ensure care is co-ordinated and integrated across all sectors involved in delivering end of life care.

 

2012/05

Improve the psychological, physical and spiritual well-being of people with end of life care needs and their carers through access to an appropriately trained and resourced workforce

 

2012/06

Focus on outcomes For example, end of life pathways; use of 'Deciding Right' documentation; ‘family voice’ feedback; care and co-ordination measures i.e. use of General Practice palliative care registers; response times for practical help; and complaints related to end of life care.

Last updated: 10/05/12

3. Who is at risk and why?

Earlier identification of people nearing the end of their life and inclusion on the register leads to earlier planning and better co-ordinated care (National Primary Care Snapshot Audit)

We know that too few patients are currently included on the Quality and Outcomes Framework (QOF) palliative care/ Gold Standards Framework (GSF) registers, and that there are a disproportionately low numbers of non-cancer patients. But we also know that if patients are recognised early and included on the register, they receive better co-ordinated, proactive care that is more in line with their preferences.

So how can we improve earlier recognition of these patients? The Prognostic Indicator Guidance asks three key questions:

  1. The surprise question. Would you be surprised if the patient were to die in the next months, weeks or days? If not, what can you do now to support them?
  2. Are there general indicators of decline and increasing need? These include decreased functioning and activity, for example increasingly bed-bound , reduced response to treatment, refusal of active treatment, repeated admissions, increasing impact of co-morbidities, worsening symptoms (such as increased breathlessness), and being admitted to a nursing home.
  3. Are there specific clinical indicators related to their condition? These could be, for instance, indicators for conditions such as heart failure, respiratory diseases or dementia.

 

 

If the answer is yes to any combination of these, then these patients should be included on the palliative care register and ideally prioritised – (coded green, amber or red) – according to need so that support can be more focused. In addition, extra support should be made available, advance care planning discussions begun and the process of proactive planning initiated.

The complexities of defining when a person has entered the end-of-life phase means that, in practice, a group of people will need access to end-of-life services for a longer period than the final 12 months of life. Two notable groups are young adults and people with dementia.

Advances in medical treatments means that many children, who would have died in childhood, now live into adulthood and consequently may need palliative care services for much longer than 12 months. In 2010 approximately 2,500 children and young people aged 15–24 years died in England.

Adult services might not meet the specific needs of young adults therefore commissioners may also wish to consider the needs of this specific group when planning services for adults. Also, in the NICE guide for commissioners 'End-of-life care for people with dementia', the benchmark highlights that 66,000 people who die each year with dementia are likely to need end-of-life care before death and many of these people will need palliative and end-of-life services for much longer than 12 months.

The National End of life Care Intelligence Network ‘Deprivation and death: Variation in place and cause of death’ (2012) report improves our understanding of socioeconomic deprivation as a factor influencing end of life care. It highlights variations, some of which are known – for example, differences in age and cause of death by deprivation group. Others are less well known, for example differences in place of death by deprivation group.

 

General

  • Socioeconomic deprivation is a major determinant of where, when and how people die.

 

Place of death

  • People living in the most deprived quintile are more likely to die in hospital (61%) than people living in other quintiles (54–58%).
  • Death in care or nursing homes, often the usual place of residence for very elderly people, was less common among people living in the most deprived quintile (11%) than any other quintile (16–20%).

 

Cause of death

  • For each underlying cause (cancer, cardiovascular disease, respiratory disease and ‘other’ causes), people living in the most deprived quintile were most likely to die in hospital.
  • For each underlying cause (cancer, cardiovascular disease, respiratory disease and ‘other’ causes), within each age group (under 65, 65–84 and 85 and over), people living in the most deprived quintile were most likely to die in hospital, with the exception of deaths caused by cardiovascular disease and respiratory disease in the under 65 age group.
  • There are more deaths caused by smoking-related cancers of the lung, oesophagus, head and neck, bladder, cervix and liver in people living in the most deprived quintile (10,459) than in the least deprived quintile (6,524), and similarly more deaths caused by chronic respiratory disease in the most deprived quintile (8,820) than in the least deprived quintile (4,761).
  • There are fewer deaths from malignant melanoma, breast and prostate cancer in the most deprived quintile (3,091) than any of the other quintiles (3,987–4,563).

 

Deaths by age

  • About one-quarter (27%) of deaths in the most deprived quintile were people aged 85 and over compared with 35–40% in each of the other quintiles. This is largely because people in the most deprived quintile die younger.
  • There were twice as many deaths of people aged under 65 in the most deprived quintile (22,632) as in the least deprived quintile (11,294).
  • Among deaths of people aged under 65 years:
    • cancers associated with smoking caused twice as many deaths in the most deprived quintile (2,754) as in the least deprived quintile (1,416);
    • heart disease caused more than twice as many deaths in the most deprived quintile (3,886) as in the least deprived quintile (1,545);
    • chronic respiratory disease caused four times as many deaths in the most deprived quintile (1,251) as in the least deprived quintile (313);
    • external causes (accidents, assaults, self-harm) accounted for twice as many deaths in the most deprived quintile (2,031) as in the least deprived quintile (1,030).
  • Among deaths of people aged between 65 and 84 years:
    • cancer is the most common cause of death for each deprivation quintile, and most common in the least deprived quintile (38% of deaths compared to 32–35% in the other quintiles);
    • respiratory disease accounts for nearly twice as many deaths in the most deprived quintile (7,512) as in the least deprived quintile (3,936);
    • less than 16% of people who die at this age live in the most deprived quintile;
  • Among deaths of people aged 85 years or older:
    • heart disease and stroke cause more than a third of deaths at this age, a proportion that is consistent across deprivation quintiles.
Last updated: 10/05/12

4. What is the level of need in the population?

In Middlesbrough, the numbers of deaths have been falling in recent years, despite increasing population size.  In 2010 there were over 80 fewer deaths than a decade earlier.

Number of deaths in Middlesbrough

 

Cancer is the leading cause of death in Middlesbrough, accounting for nearly three-in-ten deaths.  The three major causes of death: cancer; cardiovascular disease (CVD); and respiratory disease, account for 70% of all deaths in Middlesbrough.  Compared with Hull, Middlesbrough has a similar proportion of cancer deaths and lower proportions of CVD and respiratory deaths.

Cause of death in Middlesbrough 2008-10

 

In Middlesbrough, more people die in a hospital than any other setting.  A higher proportion of people aged 65-84 die in hospital than for other age groups.  Deaths at home are most common for people aged under 65 years.  People aged 85+ are the most likely to die in a care home.

Place of death by age group in Middlesbrough 2008-10

 

There were 123 deaths in hospices in Middlesbrough in the three years 2008-10.  Of these, 118 (96%) were people with cancer as an underlying cause of death and there were no hospice deaths for CVD or respiratory diseases.  Proportionately fewer people die in hospices in Middlesbrough than in England.

 

Palliative care registers are maintained by general practices.  Middlesbrough practices had a total of 232 people on palliative care registers in 2010/11.  The proportion of people on palliative care register varied from 0.04% to 0.37% of people registered with the practice.

 

Further details regarding end-of-life data are available at:

http://www.endoflifecare-intelligence.org.uk/profiles.aspx

Last updated: 09/05/12

5. What services are currently provided?

Good quality end of life care should span all services and conditions and should be a generic skill throughout the workforce.

Specific specialist services include:

  • Specialist Palliative Care Nursing
  • Specialist Palliative Care consultants
  • Hospice care
  • Marie Curie Services
  • Bereavement services
  • Allied Health Professionals
  • Community & Specialist Nursing
  • Psychologists

 

End of life services that are currently available are being mapped.

Last updated: 09/05/12

6. What is the projected level of need?

In 2011, Middlesbrough is estimated to have 10,500 residents aged over 75 years.  By 2016 this will have risen to 11,200 (a 7% rise) and by 2021 there will be 12,100, a 15% increase from the 2011 figure.

It is likely that this increase in the older population will lead to a corresponding increase in the need for end of life care services.

Last updated: 09/05/12

7. What needs might be unmet?

People receiving end of life care require services from a range of providers from the health, social care, community and voluntary sectors.  Sometimes these services might not be fully co-ordinated.

The majority of people are dying in hospitals, but expressed preferences of the majority show that they would prefer to die in a different setting.

Last updated: 09/05/12

8. What evidence is there for effective intervention?

National End of life Strategy, Department of Health, 2008

Case studies and documents from http://www.endoflifecareforadults.nhs.uk/

Map of Medicine end-of-life pathways.

Last updated: 09/05/12

9. What do people say?

People’s preferences regarding place of death

Several large scale surveys of the public have been undertaken in recent years to ascertain people’s preferences and priorities in relation to end of life care. These surveys are complemented by detailed research based on focus groups and interviews with older people and those who are approaching the end of life. Although people’s preferences and priorities may change as death approaches, these changes will be linked on occasion to the concerns regarding the availability of services for their preferred place of care. The main findings can be summarised as follows:

  • Most people would prefer to be cared for at home, as long as high quality care can be assured and as long as they do not place too great a burden on their families and carers;
  • Some research has shown that some people (particularly older people) who live alone wish to live at home for as long as possible, although they wish to die elsewhere where they can be certain not to be on their own;
  • Some people on the other hand would not wish to be cared for at home, because they do not want family members to have to care for them. Many of these people would prefer to be cared for in a hospice; and
  • Most, but not all, people would prefer not to die in a hospital although this is in fact where most people die.
Last updated: 09/05/12

10. What additional needs assessment is required?

Refresh of End of Life Profiles

Last updated: 09/05/12

Key Contact

Name: Andrew Stainer

Job Title: Commissioning Manager, Planned Care

e-mail: andrew.stainer@tees.nhs.uk

phone: 01642 745082

 

References

Local strategies and plans

 

National strategies and plans

Department of Health (DH), (2008). End of Life Care Strategy - promoting high quality care for all adults at the end of life. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277

 

Other references

National End of Life Care Intelligence Network. (2011). End of Life Care Profiles. http://www.endoflifecare-intelligence.org.uk/profiles.aspx

The Marie Curie Palliative Care Institute Liverpool, (2011). National Care of the Dying Audit – Hospitals, 3rd Round.  http://www.mcpcil.org.uk/liverpool-care-pathway/national-care-of-dying-audit.htm

The Marie Curie Palliative Care Institute Liverpool, (2010). Liverpool Care Pathway for the Dying Patient. http://www.mcpcil.org.uk/liverpool-care-pathway/

National End of life Care Intelligence Network, (2012). Deprivation and death: Variation in place and cause of death.  http://www.endoflifecare-intelligence.org.uk/resources/publications/deprivation_and_death.aspx