Drs Bee Wee (left) and Stephen Barclay explain how the NICE quality standard on end-of-life care requires sensitive communication and effective care planning
In an 'average' practice list, 1% of the patients will die each year and the 'average' GP will have 20 patients die annually: 15 from non-cancer causes and five from cancer-related causes. At present, 54% of deaths occur in hospitals, 21% at home, 18% in residential and nursing homes, and 5% in hospices.1 Research shows that more than 60% of adults in England who participated in a telephone survey, would prefer to die in their own home, if circumstances allowed.2 In line with the emphasis on facilitating patient choice, there is now an increased focus on enabling more patients to die at home if they so wish.
The number of people dying at an older age is rising: by 2030, the proportion of deaths that takes place in those aged 85 years or over is projected to be 44%.3 Many of these older people will have more than one potentially life-limiting condition, and will have combination dying trajectories (see Figure 1).4
Recent years have seen a growing recognition of the need to provide higher quality of care at the end of life for people with all diagnoses, in all settings, and at all times of day and night. The Department of Health (DH) End of life care strategy, published in 2008,5 stimulated GP practices, hospital clinicians, managers, and commissioners throughout the NHS to develop their provision of care for patients approaching the end of life. The General Medical Council and the DH use the 'last year of life' as a broad parameter for defining the period of end-of-life care.5,6
National reports, policies, and guidance that have an impact on end-of-life care in the 21st century include:
- National Audit Office—End of life care7
- DH—End of life care strategy5
- General Medical Council—Treatment and care towards the end of life.6
|Figure 1: Dying trajectories4|
Reproduced from Murray S. Care for all at the end of life. BMJ 2008; 336 doi: 10.1136/bmj.39535.491238.94. Reproduced with permission
The NICE quality standard for end-of-life care
The NICE quality standard for end-of-life care for adults,8 published in November 2011 and consisting of a set of 16 statements, collectively defines best practice for end-of-life care (see Table 1). This includes people:
- whose death is imminent
- who are expected to die within the next 12 months from advanced, progressive, incurable conditions, or from general frailty and co-existing conditions
- who are at risk of dying from a sudden acute crisis in an existing condition (e.g. heart failure or chronic chest disease).
The NICE quality standard covers end-of-life care related to all conditions, occurring in all settings, at any time of the day or night, and provided by any healthcare or social care professional.8 It does not attempt to address the clinical management of specific conditions or symptoms. It focuses only on adults, and not children, although some aspects may be relevant for those in the transition between childhood and adult services.
Because end-of-life care requires healthcare and social care services to work together seamlessly, there is a greater emphasis on social care than might be seen in other quality standards on healthcare. The key source documents used for developing this quality standard were the DH End of life care strategy5 and the 2004 NICE cancer service guidance, Improving supportive and palliative care for adults with cancer.9
A multidisciplinary Topic Expert Group—consisting of representatives from general practice, district nursing, palliative medicine consultants, geriatric medicine, clinical nurse specialists, allied health professionals, social care, chaplaincy, and service users—met on several occasions to draw up this standard. The draft standard was put out for national consultation over the summer of 2011.
The 16 quality statements can be considered under the following three broad headings:8
- Identification, assessment, and communication
- Addressing needs of patients and their families and caregivers
- Systems and infrastructure—access, coordination, and workforce.
|Table 1: NICE quality standard for end-of-life care8|
|Identification and assessment||1||People approaching the end of life are identified in a timely way.|
|2||People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.|
|3||People approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, with the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.|
|Holistic assessment||4||People approaching the end of life have their physical and specific psychological needs safely, effectively, and appropriately met at any time of day or night, including access to medicines and equipment.|
|5||People approaching the end of life are offered timely personalised support for their social, practical, and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.|
|6||People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.|
|7||Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.|
|Access to services||8||People approaching the end of life receive consistent care that is coordinated effectively across all relevant settings and services at any time of day or night, and delivered by practitioners who are aware of the person's current medical condition, care plan, and preferences.|
|9||People approaching the end of life who experience a crisis at any time of day or night receive prompt, safe, and effective urgent care appropriate to their needs and preferences.|
|10||People approaching the end of life who may benefit from specialist palliative care, are offered this care in a timely way appropriate to their needs and preferences, at any time of day or night.|
|Care in the last days of life||11||People in the last days of life are identified in a timely way and have their care coordinated and delivered in accordance with their personalised care plan, including rapid access to holistic support, equipment, and administration of medication.|
|Care after death||12||The body of a person who has died is cared for in a culturally sensitive and dignified manner.|
|13||Families and carers of people who have died receive timely verification and certification of the death.|
|14||People closely affected by a death are communicated with in a sensitive way and are offered immediate and ongoing bereavement, emotional, and spiritual support appropriate to their needs and preferences.|
|Workforce||15||Health and social care workers have the knowledge, skills, and attitudes necessary to be competent to provide high-quality care and support for people approaching the end of life and their families and carers.|
|16||Generalist and specialist services providing care for people approaching the end of life and their families and carers have a multidisciplinary workforce sufficient in number and skills mix to provide high-quality care and support.|
|National Institute for Health and Care Excellence website. End of life care for adults quality standard. Reproduced with kind permission.
Available at: www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp (accessed 24 April 2012).
Identification, assessment, and communication—quality statements 1, 2, and 3
Statement 1 emphasises the importance of timely identification of people who are likely to fall into the broad parameter of being in the 'last year of life'.8 Such identification is not without its challenges, particularly for non-malignant conditions where prognosis is much less predictable than in cancer: in many cases the clinicians are 'hoping for the best but planning for the worst'. Optimal timing will vary from condition to condition, and from individual to individual. General practice is frequently the most appropriate setting for identification of people in the last year of life, and for the communication and provision of information as covered in Statement 2.8
Statement 3 focuses on assessments that are comprehensive and offer patients the opportunity to participate in establishing their own care plans.8 This recognises explicitly that needs are likely to change over time, as may preferences. Therefore, assessments need to recur as often as is necessary to make sure that the care plan remains current and in line with the circumstances and wishes of the patient. Not all patients will wish to have such discussions in advance, so considerable sensitivity is required to make sure that patients have the opportunity to have such discussions, while not feeling forced into doing so. Advance care planning falls within this arena: this allows patients to state their preferences in advance of a future loss of mental capacity. These statements may range from a simple statement of wishes and preferences to a legally binding Advance Decision to Refuse Treatment.
Statements 1, 2, and 3 underpin the remaining statements in this quality standard. Knowledge about individual patients' needs and preferences need to be made available to other professionals so that such information may be used to the patient's benefit (see statement 8, Table 1).
Addressing the needs of patients, and their families and caregivers—quality statements 4, 5, 6, 7, 10, 11, 12, 13, and 14
The needs of patients, and their families and caregivers, should be addressed in a systematic, responsive, and comprehensive way. These include physical and psychological symptoms, which often require access to medicines and equipment. As these may occur or become exacerbated at any time of day or night, providers and professionals must ensure that such needs can be addressed quickly, safely, and effectively. This has particular implications for commissioners who must make sure that such adequate, high-quality services are commissioned out of hours, as well as during the daytime and at weekends.
Statements 5 and 6 address the individual's social, emotional, spiritual, and religious needs.8 Practical needs and the ability to maintain independence and participate in social and family life are critical to the individual's integrity as a human being. Throughout these statements, and in statement 7 in particular, there is recognition that needs and preferences change over time, as must the responses from healthcare and social care professionals, and services.8
While GPs, district nurses, social carers, and hospital clinicians provide the majority of care at the end of life, there are times when specialist palliative care advice and support is required to achieve optimal management, and statement 10 focuses specifically on the availability of, and referral to, specialist palliative care services for those patients who may benefit from it.8
Most of the statements in the quality standard deal with the whole trajectory of end-of-life care. However, statements 10 to 14 relate specifically with the last few days of life and the period immediately after death. This is an emotionally fraught time, when a bad experience can mean that all the good care that has taken place before the last days of life is forgotten. Excellent care is remembered with huge appreciation by families, whereas a poor experience causes enormous distress and is remembered long into the future, sometimes causing long-term mental and physical health problems, including anxiety, depression, and unresolved grief. Statement 14 acknowledges that the bereavement, emotional, and spiritual needs of people closely affected by the death might require ongoing support well beyond the immediate aftermath of the death itself.8
Systems and infrastructure: access, coordination, and workforce—quality statements 8, 9, 15, and 16
The final set of statements deal with the systems and infrastructure required for providing high-quality end-of-life care.8 Care that is consistent and effectively coordinated across all settings, and that responds to crises with the appropriate urgency and level of expertise, requires professionals to have the necessary knowledge, skills, and attitudes to deliver this care. This means that education has to be regarded as an integral responsibility of professionals, service providers, and commissioners alike. Similarly, commissioners have to work with service providers to ensure that the right service design, skill mix, and numbers of professional staff are available to deliver such high-quality care.
Other quality standards
The following NICE quality standards also have relevance for end-of-life care:
- Chronic obstructive pulmonary disease—people with advanced disease, and their carers, are identified and offered palliative care that addresses physical, social, and emotional needs (statement 13)10
- Dementia—people in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs (statement 9)11
- Breast cancer—people with recurrent or advanced breast cancer have access to a 'key worker', who is a clinical nurse specialist whose role is to provide continuity of care and support, offer referral to psychological services if required, and liaise with other healthcare professionals, including the GP and specialist palliative care services (statement 12)12
- Chronic heart failure—people with moderate and severe chronic heart failure, and their carer(s), have access to a specialist in heart failure and a palliative care service (statement 13).13
The NICE quality standard for end-of-life care for adults is a timely piece of work that complements other national policies and guidance. Delivering high-quality end-of-life care requires truly effective collaboration between professionals and patients (and their families and caregivers), healthcare and social care, statutory and voluntary sectors, and importantly, between practitioners in primary and secondary care.
View other NICE quality standards at: egln.co.uk/go/10885
written by Drs Bee Wee and Stephen Barclay
- Commissioners need to assess the needs of their population, with particular focus on the requirements for high-quality care for:
- all patients
- with all conditions
- in all settings
- at all times of day or night
- Investing in community services to enable more people to remain at home to die if they wish is likely to be cost effective in terms of avoiding unwanted admissions (Quality, Innovation, Productivity, and Prevention agenda of investing to save)
- Most end-of-life care is provided by GPs, district nurses, hospital clinicians, and care home staff—services to support and educate these front-line staff are needed
- Particular focus is needed on ensuring adequate resources are available out of hours and during bereavement
- Access to specialist palliative care support needs to be commissioned for all times of the day and night.
- Office for National Statistics website. Mortality statistics: deaths registered in England and Wales. 2010. www.ons.gov.uk/ons/publications/all-releases.html?definition=tcm%3A77-27475
- Gomes B, Calanzani N, Higginson I. Local preferences and place of death in regions within England 2010. London: Cicely Saunders International, 2011.
- Gomes B, Higginson I. Where people die (1974–2030): past trends, future projections and implications for care. Palliative Medicine 2008; 22: 33–42.
- Murray S, Sheikh A. Care for all at the end of life. BMJ 2008; 336: 9581.
- Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. London: DH, 2008. Available at: www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277
- General Medical Council. Treatment and care towards the end of life: good practice in decision making. London: GMC, 2010. Available at: www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.asp
- National Audit Office. End of life care. London: The Stationery Office, 2008. Available at: www.endoflifecare-intelligence.org.uk/view.aspx?rid=102
- National Institute for Health and Care Excellence website. NICE quality standard for end of life care for adults. www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp (accessed 13 March 2012).
- National Institute for Clinical Excellence. Improving supportive and palliative care for adults with cancer. London: NICE, 2004. Available at: www.nice.org.uk/csgsp
- National Institute for Health and Care Excellence website. Chronic obstructive pulmonary disease (COPD) quality standard. www.nice.org.uk/guidance/qualitystandards/chronicobstructivepulmonarydisease/copdqualitystandard.jsp. (accessed 13 March 2012).
- National Institute for Health and Care Excellence website. Dementia quality standard. www.nice.org.uk/guidance/qualitystandards/dementia/dementiaqualitystandard.jsp (accessed 13 March 2012).
- National Institute for Health and Care Excellence website. Breast cancer quality standard. www.nice.org.uk/guidance/qualitystandards/breastcancer/home.jsp (accessed 13 March 2012).
- National Institute for Health and Care Excellence website. Chronic heart failure quality standard. www.nice.org.uk/guidance/qualitystandards/chronicheartfailure/home.jsp (accessed 13 March 2012). G