Conclusions and recommendations
1. Non-specialists
in palliative care looking after patients with severely disabling
or potentially terminal illnesses must appreciate the value of
early referral to palliative care consultants. (Paragraph 22)
2. While we sympathise
with, and support, the aspiration to allow all patients to die
at home if they choose, we question how realistic this objective
really is at the present time. The option to die at home will
only be realisable if there is a guarantee of 24-hour care and
support, with back-up from appropriate specialists. In the absence
of such back-up, relatives and other carers will, understandably,
be reluctant to take care of a patient at home. (Paragraph 23)
3. We recommend that
the Department of Health should consider the recent economic analysis
produced by Marie Curie Cancer Care of the potential cost benefits
arising from a shift towards more patients dying in their homes.
If indeed there are "massive savings" to be made from
such a shift, as one health Minister predicted, we hope that urgent
measures will be taken to develop this strategy. (Paragraph 26)
4. We welcome the
suggestion from Dr Ladyman that the Government, following consultation,
is considering legislation relating to extra rights for carers
in the workplace. The Canadian model of care is itself only at
an early stage of development but it seems to offer an imaginative
and sensible solution. We recommend that the Department seeks
feedback from the Canadian authorities on their experiences of
additional support to carers to establish the impact the scheme
is having on choice in place of death, the quality of care and
on the ensuing costs. (Paragraph 33)
5. We recommend that
the Government legislates to provide for a period of paid leave
for carers, taking account of the flexibilities provided by the
Canadian model. We believe that such a step would empower many
more people to achieve their wish to die at home. We also believe
that at least some of the cost to public funds of such a measure
would be offset by savings accruing from reduced hospital care.
(Paragraph 34)
6. We strongly encourage
the Department to support Marie Curie in its efforts to develop
pilot schemes, in conjunction with a range of partners, to explore
the best ways of supporting carers when someone is dying at home.
(Paragraph 35)
7. When people wish
to spend their final days at home, there are particular challenges
to health and social care services, and it is vital that they
are properly integrated. We are concerned that the emphasis on
personal care within social services has been to the detriment
of equally important domestic support. We do not believe that
it is acceptable for people who choose to die at home to find
that they are doing so in increasingly squalid surroundings. Indeed,
it is likely that it is poor domestic conditions that often precipitate
admission to hospital for people who should be supported so as
to be able to remain in their own homes. We recommend that the
Department of Health should review the place of domestic support
within the overall spectrum of social care services, and ensure
that people's needs for domestic help are adequately addressed.
We also recommend that particular attention is given to providing
aids and adaptations to allow people to stay in their own homes.
(Paragraph 44)
8. We are concerned
that there is still considerable variation in the criteria for
continuing healthcare between SHAs, and that people who meet the
criteria in one SHA for continuing healthcare because of their
palliative care needs, fail to satisfy the criteria in another
authority. This is unfair, and is incompatible with the principle
of a national health service. We look forward to the publication
by the Department of the reviews of eligibility criteria and any
associated guidance. We are convinced that the only way to ensure
that there is equity in access to NHS continuing care is to introduce
national eligibility criteria. We recommend that the Department
develop national criteria for continuing care, including criteria
for palliative care, to remove the inequitable anomalies that
arise between criteria operated by different SHAs. Guidance and
support will also be needed to ensure that a single national set
of criteria is consistently interpreted and applied. (Paragraph
47)
9. We look forward
to the publication of the Department's vision for adult social
care, and hope that it will provide the basis for some wide-ranging
and innovative developments and the promotion of new models of
care. We wish to underline the importance of removing the distortions
created by the boundary between the parallel health and social
care systems. While we recognise that structure is not everything
(and that partnerships and joint working are of great importance,
as the Health Committee has made clear in previous reports), we
are convinced that an integrated structure is a necessary pre-condition
for tackling the anomalies that arise in trying to distinguish
between health and social care needs. These issues, and the associated
disputes, are especially abhorrent in respect of palliative care,
where unseemly arguments about who should pay for different elements
of a care package can lead to inexcusable delays and poor practice
that is anything but patient-centred. (Paragraph 49)
10. There is a danger
that where the reimbursement system relating to delayed discharges
is applied selectively there may be damaging and unintended consequences
emerging elsewhere in the system. There are real risks that this
will lead to different classes of patients—those for whom
discharge planning is prioritised because of the financial penalties
that might otherwise be incurred by social services, and those
for whom timely discharge becomes a lower priority, even where
objectively timeliness is of the essence. We understand that Help
the Hospices is undertaking a survey of the scale of the problems
this is causing in the hospice sector. We urge the Government
to examine these findings as a matter of urgency and to consider
whether the delayed discharges legislation is having deleterious
effects on the care and well-being of patients in hospices, for
whom any delay in discharge arrangements can be catastrophic,
meaning the difference between someone ending their days in the
place of their choice, or having that wish denied. (Paragraph
53)
11. We recommend that
the Department analyses the Comparative Index of Need drawn up
by the National Council for Hospice and Specialist Palliative
Care Services to assess whether a better match between need and
provision can be agreed. (Paragraph 61)
12. We accept that
palliative care goes well beyond hospice provision; however, the
role of a hospice within the spectrum of provision is an important
one. We are uncertain how the Government plans to ensure greater
equity in service provision in the context of devolved responsibilities
to PCTs, and without clear guidance on the preferred models of
care. An acceptance of the current diversity of provision could
also entail tolerance of continued inequity. We urge the Department
to consider what more can be done to inform PCT commissioning
of palliative care services by the issuing of clearer guidance
on preferred models of care. We deal below with the possible impact
on equity of provision of additional Treasury funding for hospices.
(Paragraph 62)
13. We hope that the
forthcoming National Service Framework for Children will acknowledge
the particular difficulties of the transition from adolescent
to adult services. We also believe that boosting the role of carer
and giving proper support in care are vital components of palliative
care for children. (Paragraph 69)
14. We welcome the
fact that the Department recognises the problems of inequitable
provision of palliative care services relating to age, ethnicity
and complex needs. We also welcome the research they have commissioned
in this area to improve services and to bring into the mainstream
the good practice that exists patchily. We believe it is important
that work on improving the accessibility of palliative care services
does not focus solely on that provided within hospice buildings.
It is at least as important that community palliative care services
are available (and acceptable) to members of black and minority
ethnic communities, to older people and to those with complex
needs. These may well be provided by hospices, as is already often
the case. The need to ensure that all services are culturally
sensitive should form an important dimension of the training of
both generalist and specialist palliative care staff. (Paragraph
78)
15. We note the suggestion
of Rowena Dean of Hospice at Home of the desirability of a national
needs analysis of non-cancer diagnosis requiring palliative care.
We recommend that the Department undertakes such an analysis.
(Paragraph 88)
16. While we welcome
the guidelines on supportive and palliative care for adults with
cancer published by the National Institute for Clinical Excellence
(NICE), we are concerned that an opportunity has been missed to
extend the range of palliative services. The guidance relates
solely to cancer services, even though cancer accounts for only
one quarter of all deaths in the population. The principles and
recommendations would be broadly applicable to the general and
specialist palliative care for patients with conditions other
than cancer. We recommend that the forthcoming National Service
Framework for Long-Term Conditions assumes responsibility for
palliative care in non-cancer conditions and takes full account
of the recent NICE guidance. It should incorporate the key principles
of the NICE guidance as far as possible in order to remove the
distinction that is made in the palliative care for cancer patients
and for patients dying from other diseases. (Paragraph 89)
17. The transition
towards more central Government funding of hospices should afford
an opportunity to introduce greater equity in the caseload than
hospices manage currently. (Paragraph 90)
18. We agree with
the evidence received from Professor Richards and other witnesses
that there are significant challenges in raising the skills and
awareness of all health care staff in palliative care, whether
they work in hospitals, care homes or the community. We recognise
that steps towards this objective are already in progress in respect
of the End of Life Care Initiative, but we recommend that these
should be accelerated. We would urge the appropriate Royal Colleges
to ensure that training in palliative care becomes part of continuing
professional development, and to consider making such modules
a mandatory requirement for revalidation. (Paragraph 98)
19. We also recommend
that in supporting the take-up of tools such as the Gold Standards
Framework and the Liverpool Care Pathway for the Dying, the Department
should particularly encourage local champions working in care
homes, in general practice and in the community, since these have
been identified as priorities for palliative care knowledge-development.
(Paragraph 99)
20. We hope that the
widespread dissemination of the Gold Standards Framework as a
tool to ensure that information follows the patient will do something
to address the major issue of communication failure in some palliative
care. We also believe that gaps between health and personal social
care contribute to communication failures. (Paragraph 104)
21. As we have noted
in other inquiries, the delays in establishing electronic patient
records consistently act as a barrier to good communication between
health professionals and patients, families and carers. We believe
that the introduction of electronic patient records in palliative
care would be particularly beneficial to patients, given the need
for so much support to patients out of normal working hours, and
the need to involve a wide range of health professionals in care
at the end of life. (Paragraph 105)
22. We recommend that
the Government review the regulatory inconsistencies that beset
hospice and palliative care service providers, and ensure that
these are removed in the interests of simplicity, fairness and
ease of use. We do not believe that these inconsistencies have
been adequately addressed in the latest restructuring of the regulatory
bodies (which came into effect only in April 2004), or by the
Memorandum of Understanding that has been developed between CSCI
and CHAI. This should be tackled as a matter of urgency if these
new organisations are to have credibility. (Paragraph 109)
23. We applaud the
ambitious goal the Government has set to double the number of
palliative care consultants by 2015 based on the figures for 2002.
Given the ageing of the population, and the current problems being
faced by many providers submitting evidence to this inquiry, we
believe that these additional resources will be sorely needed.
We also welcome the fact that the Government is offering funding
to address the current deficit. We still remain to be convinced
that the ambitious targets being set will be realised. We also
think it is essential that shortfalls in staff involving other
health and social care professionals with relevant expertise—such
as community nurses and social workers—are addressed at
the same time. Palliative care is manifestly a branch of medicine
requiring a team approach. (Paragraph 115)
24. We welcome the
additional resources that the Government has directed to the development
of specialist palliative care services throughout the country.
The allocation of the additional £50 million has been facilitated
by the establishment of the National Partnership Group for Palliative
Care, bringing together the voluntary sector, the NHS and the
Department. (Paragraph 128)
25. We note the momentum
achieved in Canada by an end of life/palliative care coalition.
We recommend that the Department assesses the membership of the
National Partnership Group and extends it to include representation
from all relevant areas, including education; carers; charities
dealing with illnesses other than cancer; those suffering inequity
on the grounds of age; as well as black and minority ethnic groups.
(Paragraph 129)
26. It is now widely
accepted that the NHS has relied heavily on the goodwill and charitable
funding of the hospice movement. We welcome the Government's statement
that it is committed to increasing the contribution made by the
NHS to hospice costs. Witnesses repeatedly emphasised the need
to ensure that when hospices provided services for NHS patients,
they should receive an appropriate payment. Important questions
arise about the basis for calculating such costs. We are aware
of the perverse incentives which operate against hospices admitting
patients with non-cancer diagnoses. Patients with conditions such
as motor neurone disease, for example, may have complex care needs
of a long-term nature. When hospices are paid on the basis of
a care episode there will clearly be an incentive to admit patients
with a relatively short life expectancy. (Paragraph 130)
27. We welcome the
transition that will take place to more sustainable funding mechanisms
for hospices, and the benefits this will have for the voluntary
sector by 2008. We are especially concerned that the funding mechanism
(whereby money will follow the patient) should be sufficiently
sophisticated to recognise the different requirements of parts
of the service and the distinction between longer and shorter
stays for different patients and diagnostic groups. (Paragraph
131)
28. A fundamental
shift in funding from the voluntary to the state sector also offers,
in our view, a golden opportunity to address some of the issues
relating to equity. We believe that need should be carefully mapped
against resources, as is already happening, and that this process
should inform the distribution of central funding. If necessary,
tough decisions will need to be taken not to fund particular projects
if they are in areas which are relatively over-supplied. Similarly,
if particular centres are failing the needs of their population
in terms of ethnicity and age relative to other providers serving
populations with similar profiles, we believe commissioners should
consider withholding funding. (Paragraph 132)
29. The right to 'a
good death' should be fundamental. We believe that social attitudes
are part of the problem, and that a willingness to be open about
death will facilitate better communication and ultimately better
provision. We hope that this is an area the Department for Education
and Skills will address, both by examining the place of education
about death within the curriculum and within teacher training.
(Paragraph 135)
30. We also believe
that all health professionals will increasingly face the issues
raised by this inquiry, given shifts in the population, with more
people living longer with a range of progressive illnesses, as
well as cancer, where cure cannot be achieved. The key message
from our inquiry is that if palliative care is to achieve improvements
in the quality of the last months of life across the population
it will need to operate in a much more equitable way. It will
also need to be delivered more strategically and to find a way
of overcoming the divide between health and social care. (Paragraph
136)
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