Select Committee on Health Written Evidence



  1.1  Mainstream palliative care in the NHS—Learning from the developments in the palliative care specialty, we need. now to mainstream high quality end-of-life care throughout the NHS, available from any clinician, for all patients with any diagnosis, and their carers, in any setting at any time. We can build a healthcare system that responds to the needs of three types of patients—cancer, organ failure and dementia/frailty patients.

  1.2.  Looming healthcare epidemic with significant implications—Better treatments, changing demography and aging populations living longer with serious morbidity mean that significantly more people need palliative/supportive care for longer in future—it is a looming problem of epidemic proportions with real healthcare implications that we currently have not addressed.

  1.3.  Develop generalist care provided by all, especially at home—We need to build on, extend and develop the two tried and tested frameworks already used to improve care for patients in their own homes ie the Gold Standards Framework in Community Palliative Care (supported by the Cancer Services Collaborative and Macmillan) and the Liverpool Care Pathway (supported by Marie Curie). We need to work closely with social services to develop better community health/social support eg night sitters, carer support, access to nurses, extend Continuing Care Funding etc to allow more to remain at home in the final weeks of life.

  1.4.  Form a National End of Life Alliance and use the already formed Palliative/ Supportive Care Networks to implement change—Care at the end of life is the responsibility of the whole community, not just those in the specialty of palliative care. Led by a new National End of Life Alliance, we need to build on the expertise already developed and the emerging interest, initiatives and resources (eg the Palliative/Supportive Care Networks linked to each of 34 Cancer Networks) to support patients towards the end of life, linked with others groups representing other disease areas.


2.1  Choice

    —  Control, choice and self determination are extremely important issues for dying patients and their families (see Age Concern Debate of the Age 2000—Section 5.5).

    —  There are a limited number of choices in end of life care—location, treatments, involvements of personnel etc. Ensuring that most die at home if that is their wish is a fundamental right.

    —  We need to be able to offer one reliable option, rather than a range of choices that will not be well delivered. As people spend 90% of the final year of life at home, these choices are largely based in the community and often involve improving the usual generalist care provision. This would involve improving the reliability of community support in the final weeks.

    —  Improving community provision will have an effect on other services ie reduce unnecessary admissions and increase hospital capacity, reduce length of stay and hospital mortality ratio and the overall secondary care financial burden.

2.2  Equity

    —  We need to be able to deliver an equitable system of care for all patients at the end of life, with any diagnosis, in any setting at any stage.

    —  We need to improve services for non-cancer patients, in particular heart failure and COPD and renal failure pts and to include provision for those with slow gradual decline eg dementia/general frailty, especially in Care Homes.

    —  Currently institutionalised care is more likely for the poor, elderly, those with no carers, those with long illnesses, women etc. We need to reduce the inequity of care.

    —  We need to develop services that are fair and accessible for all ages including children and the elderly. Care home provision needs to be included.

2.3  Communication

    —  Services should be patient focused and customised to their needs—this involves asking patients about their preferences and building in advanced care planning.

    —  Carer support is vital—carer breakdown is one of the main causes of institutionalised care.

    —  We should encourage longer clinical relationships eg the use of a key worker.

    —  We should be able to respond to cultural and religious differences with respect, attending to the specific requests of patients and families.

    —  We should build in effective tools for communication and transfer of information eg electronic handover forms for out of hours providers, home packs for carers, patient response sheets, "Do Not Resuscitate" decision information for ambulance staff, patient held records, multi- disciplinary team meetings etc.

2.4  Support services including home care

    —  Community/domiciliary based services should be prioritised over institution based initiatives eg home care teams, community nursing, night sitters training of care workers etc.

    —  Patients' main needs are symptom control and a sense of security and support.

    —  To achieve a sense of security and safety, and to be able to participate in decision making the correct information should be available in a form that is comprehensible to the patient and carer.

    —  Priority should be given to comprehensive home care provision for an agreed period of time (night sitters, auxilaries, access to nurses, domiciliary hospice support etc) as in the Toronto model of full home care provision in the final weeks of life as determined by patient need. This would prevent inappropriate admissions.

    —  Social services back up is vital and appropriate use of non-medical services such as community and faith group provision (examples of telephone support groups run in the community etc).

2.5 Quality assurance and governance

    —  Every patient deserves the best of care towards the end of life.

    —  There should be a greater focus on quality of service provision rather than speed of appointments or choice—"All the care she received before meant nothing because she died the way she died" (Husband of patient who cried out in pain for the last hours of her life whilst a hospital inpatient).

    —  Performance management could be via the PCT Clinical Governance systems and the Supportive/Palliative Care Networks.

    —  CHAI assessment would incorporate end of life assessments as a performance indicator for hospital and primary care trusts.

2.6  Workforce issues and funding

    —  The majority of patients towards the end of life are cared for by their usual generalist clinician eg GPs, District Nurses, ward or Care Home staff etc.

    —  We need to maximise their input and optimise care in three ways:

      —  With the use of frameworks and guidance eg Gold Standards Framework and Liverpool care Pathway.

      —  With targeted and available education eg Education centres, on line learning etc.

      —  With access to back up support from specialists eg NHS Direct advise line etc.

    —  There are limited numbers of specialists in palliative care—we need to ensure best use of their skills and resources by referring the appropriate patients, once generalist care has been maximised.

    —  "The Primary Health Care Team already provides, and will continue to provide, the mainstay of care for most dying patients"—Department of Health 1998.

    —  Strategic planning and funding issues must be examined broadly across the whole community, taking into account the savings made to hospitals with better community support (at approx £300/patient/day per hospital bed). Creative usage of Outpatient care to support patients at home can be investigated eg the New York "Ambulatory care" Salek model.

    —  Charitable and voluntary bodies should work effectively within the remits set for NHS care, with some accountability to NHS structures also, to complement but not supplant good provision. Piecemeal developments can worsen the lottery of care if not fully integrated into strategic planning, as has been evidenced in the random development of charitably funded hospices or Nursing services (many now becoming better integrated).

2.7  Government policy

    —  There needs to be an emphasis from the top on the importance of improving end of life care in the NHS, with consequent performance management and quality assurance.

    —  We would like a dedicated minister to develop policy issues as in Canada eg the provision of compassionate leave, the provision of comprehensive home care services etc.


  3.1  Formation of New End of Life Alliance—That a National End of Life Alliance be established, with a specific small working party (building on initial work to supervise the latest £12 million investment), but with a view to expanding this. This would include several representative bodies to oversee overarching policy decisions, develop agreed frameworks and new initiatives, building on five areas of provision. (see Sect..)

  3.2  Minister—That a minister be appointed to oversee palliative care policy developments as in Canada eg compassionate leave provided to care for dying person at home and comprehensive home care provision become standard etc.

  3.3  Dying at Home Support and Frameworks—That increased support and emphasis be given to caring for people dying at home ie empowering the generalist provision with the use frameworks such as the Gold Standards Framework and the Liverpool Care Pathway, plus examination of social and other generalist care.

  3.4  Network structures used and funded—That Palliative/Supportive care Networks be supported and used to implement national change across the NHS (such as the implementation of GSF and LCP frameworks) and cross-organisational developments such as in the Birmingham Supportive/Palliative Care Networks Proposed strategy be encouraged and further funded.

  3.5  Quality Improvement—That national support be given to develop improvement initiatives eg Continuous Quality Improvement, a Supportive Care Collaborative etc, to encourage locally owned and relevant developments and use the creative potential of the grass roots workers.


  Prof Joanne Lynn, Director of Americans for Better Care of the Dying, writes[8]

    Why are we dependent on good luck for the one inevitable event in our lives?

    When asking bereaved carers about the death of their loved ones, they either describe sad scenarios of mismatched uncoordinated services causing great distress or, alternatively, excellent quality care for which they are extremely grateful—but then they always added `weren't we lucky! In an age of high technology when we can fly planes, and routinely undertake complex surgical procedures why do we still have to rely on being lucky when addressing problems related to care at the end of life—the one thing in life which will happen to us all? . . .

    How did we come to do so poorly on care at the end of life? A fundamental reason is we have simply never been here before. We face problems our grandparents would envy—the problems that come from growing quite old and dying rather slowly . . . So what will we need when we have to live with an eventually fatal chronic disease? More than anything else we need reliability—we need a care system we can count on . . . all it takes is innovation, learning, reorganisation and commitment. People should not expect end of life care to be miserable and meaningless . . . We should receive good care without having to hope for good luck.

    The Gold Standards Framework has had remarkable uptake in Great Britain—enabling any practising doctor in any community to undertake specific actions that demonstrably improve the reliability and effectiveness of the care given to people coming to the end of life. By the end of this year, the GSF will have become part of the practice in more than a tenth of the practices in Britain and will have become part of the definition of quality care for general practices and hospitals. The substantial and enduring effects upon the well-being of very sick people and their families can hardly be overstated, and the example of a pragmatic quality improvement project that spread widely is instructive to all who aim to improve health care. Joanne Lynn, February 2004.

    "Better care for the dying should be a touchstone for success in modernising the NHS" Sir Nigel Crisp March 2003.

    "The care for the dying should be raised to the level of the best." NHS Cancer Plan 2000

    "Every hospital admission can be regarded as a breakdown in home care" Kaiser Permanente US

4.1  Mainstreaming high quality end of life care in the NHS

    "In effect, instead of a choice of a Rolls Royce for some we need a reliable basic Mini Metro for all."

  We are now at a critical stage in our thinking about the development of care for people towards the end of life in the UK. There is increasing recognition of the importance of improving supportive/palliative care for all patients at the end of life with any diagnosis in any setting, at any stage within the NHS, and growing public recognition that good care for the dying is not a sign of failure but of success—it is a significant barometer of other care within the NHS. Almost 40 years on from the pioneering developments in the UK of the modern hospice movement and the specialty of palliative care, largely voluntarily funded, we can applaud the significant improvements in care for some dying patients. Yet still this is only available to a minority—it is estimated that only 15-20% patients are under specialist palliative care, and about 98% of these are cancer patients with the average length of hospice stay being two weeks. Most end of life care will always be provided by generalists—GPs and District Nurses in the community, ward staff in hospitals and Care Home staff. We can improve generalist care through improving access to education and training and with the use of guidance or frameworks (eg GSF and LCP), backed by specialist and social support. And though most of the final year of life is spent at home, most patients still die in hospital under generalists' care, despite most wishing to die elsewhere. We need to rethink our end of life services across the whole of the NHS, social service and voluntary providers to ensure we can maintain the best quality of care for all, and to develop generalist palliative care provision for all supported by specialist palliative care for the appropriate few. This should include patients dying with heart failure, COPD, renal failure, dementia or general decline/old age as well as those with cancer. Examples of developments from overseas are stimulating and the impact of the availability of euthanasia crystallises the importance of delivery of reliable systems of end of life care.

4.2  Looming Epidemic

  With sicker people living longer and with demographic changes, there is a "looming epidemic" of significant problems in end of life care awaiting us and we currently do not have the systems in place to cope . . .

    "If we don't get it right for dying patients then what are we about?" (David Carson, Department of Health Out of Hours Implementation Group June 2001)

  100% mortality for all is an immutable fact that demands our full attention, amidst numerous demands for funding priorities. We have struggled to address this in a piecemeal way so far because we have not been here before and we have not planned strategically for future needs in a reliable cross-organisational multi-system way. With increasing longevity, an ageing population living longer with ill health, more living alone and with fewer carers available, we have not yet developed a health care system able to cope with these rising problems, many of them social rather than purely medical.

  We are said to be a "death denying" society with death as the last taboo, but perhaps in reality we have developed a death denying health service until now. But the time is right and we now have the capacity to reverse this trend and to enable good planning for good end of life care, as we do for beginning of life/antenatal care. Currently 90% of health expenditure occurs in the last years of life, there is a shift away from hospitals and hospices towards community care, more than half die where they would not choose to and there are inherent inequities in that the poor, elderly and socially isolated are more likely to receive institutionalised care, with a greater proportion of these being women. By 2020, 21% of the UK population will be over 65. With this increase in the aging population there will also be a decline in the health care workforce. Everyone will know of someone who is dying or has recently died, whether with excellent, moderate or poor levels of care, and the issue of a health service adequate to cope with the increasing burden is now raised higher on the agenda. With the importance of the NHS in our nation's thinking, the increasingly vocal "User" View becoming prominent, the Sixties baby boom generation becoming more aware of the inadequacies of care for their parents plus the growing elderly vote, this issue is becoming politically and electorally very significant, as well as concentrating the mind of many of us at a personal level.

4.3  Develop generalist care provided by all, especially at home—eg Gold Standards Framework and Liverpool Care pathway for the Dying

  The Gold Standards Framework in Community palliative care is an enabling tool to develop a practice-based system to improve and optimise the organisation and quality of supportive/palliative care for patients in their last six to 12 months of life. Based on evidence-based guidelines and clinical competence, it ensures patient-centred best practice becomes standard, so to improve patients' experience of care.

  The five goals of the Gold Standards Framework are:

    to enable patients to "die well"

    (1)  as symptom free as possible;

    (2)  in their preferred place of choice;

    (3)  feeling safe and supported with fewer crises;

    (4)  carers feeling supported, involved, empowered and satisfied with care;

    (5)  staff feeling confident, satisfied, with good communication and team-working with specialists.

  The main processes are to (1) Identify, (2) Assess, (3). Plan in advance care and to improve communication and there are seven key tasks or standards relating to "the Seven Cs":

    C1  Communication

    C2  Co-ordination

    C3  Control of Symptom

    C4  Continuity—out of hours

    C5  Continued Learning

    C6  Carer Support

    C7  Care in the Dying phase

  The GSF, developed and piloted over several years, is now being used by almost 1,000 practices in England, already a third of practices in Northern Ireland, and about 200 in Scotland with a NOF funded project to take this across all practices over the next three years. A Macmillan GSF Support Programme has supported the implementation and spread of GSF in four phases, but comes to a close in 2005. In future the running of local GSF programmes will be devolved to the Cancer/Palliative care Networks, but further funding is required to ensure spread and sustainability. It is being fully evaluated at Warwick University; with a national collaboration of multi centre research projects in GSF and community palliative care already underway.

  The main overall benefits have been:

    —  raised awareness of patients towards the end of life;

    —  better measuring of care and tracking of patients;

    —  more patients dying in their preferred place of choice (usually home);

    —  better symptom assessment;

    —  better communication within and between teams and with patients and carers;

    —  better co-ordination of care and team-working;

    —  fewer crisis events or hospital admissions;

    —  better information and support given to carers; and

    —  overall improved staff confidence, communication and satisfaction with care provided.

  Primary care teams, PCTs and Networks find it helpful in enabling the development of local, practical and effective improvements in care of cancer patients in the 6-12 months of life. This is later extended to all palliative care patients with any end-stage illness and also to the supportive care of patients from diagnosis. 75% of practice teams in one phase are using GSF for all end of life patients, not just those with cancer.

    "Delivering the best possible range and quality of palliative care services for patients is about providing the right care at the right time in the right place. I commend the Gold Standards Framework community palliative care as a helpful tool to help improve and co-ordinate the care and support of seriously ill patients and their carers". Hazel Blears, MP Minister of Public Health.

    "We feel we're giving a better quality of care now to our most needy dying patients. It has formalised the good practice we may have provided on a good day so that we give the best of care to all our patients every time". GP, Huddersfield

    "The Gold Standards framework is the one thing in palliative care that has really made a difference". District Nurse, Glasgow

  For more details contact: or 020 7840 4673 or or or

  The Liverpool Care Pathway is an integrated care pathway for the last 2-3 days of life and has received considerable success in formalising and benchmarking good care in the final stages. The GSF and LCP complement each other in the community, but the LCP is also used in hospitals and hospices. For more details see

4.4  Need for a new End-of-life Alliance

  We need to be able to provide reliable care at the end of life for any patient with any diagnosis in any setting at any time.

  At this pivotal stage, we need to broaden our vision, rethink the strategic planning across all services and plan realistically to increase the reliability of our systems of care. Many patient needs are predictable yet we have not built in reliable systems to cross the boundaries of care or meet basic needs such as providing a 24-hour service. Building on the recent announcement by John Reid of £12 million investment to develop current initiatives in improving care for people coming to the end of their lives. (such as the Gold Standards Framework and the Liverpool Care Pathway) and linked with the commitment in the recent Command paper "Building on the best" to offer appropriate support in the place of choice, we would suggest that we need to develop a new End of life Alliance to consider the issues, encourage innovative developments and develop strategies in greater depth along with the ability to suggest funded policy changes. This would include representation from the specialties of primary care, palliative care, care of the elderly, coronary heart disease, etc as well as social services, voluntary and statutory bodies. We can learn from initiatives from other countries—

    A similar example from Canada is well developed (details enclosed), a collaborative model using IHI Improvement Science in Sweden where they have developed new systems of end of life care built around three patient types ("the three Esters"—one with cancer, one with organ failure eg heart failure, and one with dementia and general frailty).

    In the US, the example of the ABCD (Americans for better care of the dying) and IHI End Of Life Collaborative led by Dr Joanne Lynn have much to teach us about the benefits of CQI, (Continuous Quality Improvement) in end of life care, incorporating issues far beyond institutionalised hospice care for cancer patients that can tend to dominate palliative care in this country. Also the basic improvements for all nearing the end of life developed in Oregon in response to the Physician Assisted Suicide debate, where there is an imperative to provide good palliative care to avert the need for requests for euthanasia, and the Kaiser Permanente and Evercare initiatives.

    In England we have the model of excellence provided by palliative care specialists, well organised NHS structures such as Supportive/Palliative Care Networks linked with cancer networks beginning to broaden to improve end of life care across all diagnoses, the forthcoming NICE Supportive and Palliative Care guidance (March 2004) and the palliative care initiative of the Cancer Services Collaborative, supporting the developments of the Gold Standards Framework and the Liverpool Care Pathway for the dying. We also have developments such as the National Council of Hospice and Specialist Palliative Care 20/20 vision, the Nuffield Buckingham Agreement, Pursuing Perfection End of Life Workshops and other initiatives. A suggested model would be a central End of Life Alliance with a specific working party to help coordinate and support the Palliative/Supportive care Networks, related to the new NICE guidance, funding further developments and quality improvements and sharing good practice, with some influence on policy decisions.

    The time is right to celebrate our achievements so far but to undertake a major rethink of the way we develop health and social care to meet the needs of people nearing the end of their lives in anticipation of this looming epidemic of chronic ill-health.

    End of life care in Canada

      The Canadians have a national strategy for end of life care, and have appointed a minister for social responsibility for palliative care. The national strategy has resulted in six weeks compassionate care leave for all Canadians. From January 2004 Canadians have their job and income protected to look after a family member at the end of life. One family member can take six weeks or this can be divided between multiple family members in any variation. A "virtual hospice" has also been developed. This offers education and training for health professionals, online nurse practitioner and consultants and chat rooms, where people can log on and talk openly about issues that are important to them, including bereavement issues etc.


Preferences and practice about place of death

Preference for
place of death
Where people with
cancer die
Where people die—
all causes

Nursing/Residential Home
Other/don't know

  Source: Higginson, I (2003) Priorities and Preferences for End of Life Care in England, Wales and Scotland. National Council for Hospice and Specialist Palliative Care.

5.3  Example—Suggested plan for End of life care—as proposed for the Pan Birmingham Palliative/supportive care Network

  1.  Aim—To provide excellent care for patients towards the end of life provided by any clinician for any patient and their carer in any setting at any stage.

  2.  Five stages—Ensuring the best end-of-life care:

    1. Any Clinician:

      (a)  Framework for generalist supportive care—GSF+LCP;

      (b)  Plus Accessible Education eg on line learning.

    2. Any Carer (Informed, empowered and enabled).

    3. Any Patient (Cancer + non-cancer patients eg Heart failure pts).

    4. Any Place (Care Homes, Hospitals and Comm. Hospitals, Hospices).

    5. Any Time (Throughout journey eg from diagnosis).

  3.  Three patient groups—3 typical trajectories of illness with distinct needs, characteristics and requirements:

    1. Cancer patients.

    2. Organ failure patients eg Heart failure, COPD, renal, neurological etc.

    3. Dementia and frailty/ multiple pathology of old age.

  4.  Policy changes:

    —  To remove barriers /disincentives and develop services.

    —  As suggested in Canadian Policy remit to develop compassionate leave for carer of dying patient.

    —  Develop other policy interest in end of life care.

  5. Initiatives:

    —  End of Life Alliance.

    —  Supportive care/ end of Life network eg Pan-Birmingham.

    —  Continuous Quality improvement initiatives- eg via Modernisation Agency/CSC.

5.4  Three types of dying patient—Approx Distribution of Deaths/GP

  (from Joanne Lynn—Living Well at the End of Life White Paper Rand Health 2003)

5.5  Age Concern—Debate if the Age—Millennium Edition of the British Medical Journal

  Demonstrating the importance of some retention of control self-determination and choice at this stage.

  Twelve Principles of good death:

    —  To be able to retain control of what happens.

    —  To have control over pain relief and other symptom control.

    —  To have choice and control over where death occurs (at home or elsewhere).

    —  To have access to hospice care in any location, not only in hospital.

    —  To have control over who is present and who shares the end.

    —  To be able to issue advance directives which ensure wishes are respected.

    —  To know when death is coming, and to understand what can be expected.

    —  To be afforded dignity and privacy.

    —  To have access to information and expertise of whatever kind is necessary.

    —  To have access to any spiritual or emotional support required.

    —  To have time to say goodbye, and control over other aspects of timing.

    —  To be able to leave when it is time to go, and not to have life prolonged pointlessly.

  BMJ Jan 2000.

5.6  Age Profile of deaths:

  NB Further information available:

    —  More details of Gold Standards Framework and its evaluation.

    —  US Professor Joanne Lynn's policy document on End of Life Care.

    —  Canadian policy plan as described.

    —  Example of Swedish End of Life Collaborative and achievements.

    —  References to support statements—from "Caring for the Dying at Home: Companions on the Journey" K Thomas Radcliffe Medical Press Evidence base chapter and other sources.

5.7  Proposed Plan of National End of Life Alliance


February 2004

8   Joanne Lynn Institute of Healthcare Improvements. Accelerating Change Today October 2000 National Coalition on Healthcare Back

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