House of Commons - Health

Select Committee on Health Fourth Report

2 Choice in palliative care

14. Commenting in December 2003 on the release of additional funding to support the terminally ill, Dr John Reid, the Secretary of State for Health, remarked:

15. At present, England is lagging behind many countries of similar socio-economic status. Preliminary data on place of death and hospital death rates for England and Wales, Germany, Netherlands, Switzerland, France and Ireland, compiled for the World Health Organization and cited in its recent report Solid Facts: Palliative Care, suggest that England and Wales have the highest hospital death rates of all.[13]

16. In evidence to us the Department accepted that "many more patients would choose to die at home if they could be adequately supported in the home environment".[14] Improving patient choice is a key goal of Government health policy, set out in the response to a consultation on the subject issued in December 2003, Building on the Best: Choice, Responsiveness and Equity in the NHS. This allocated a further £12 million to end of life programmes. It also expressed a desire "to offer all adult patients nearing the end of life, regardless of their diagnosis, the same access to high quality palliative care so that they can choose if they wish to die at home".[15]

17. Judging by the evidence submitted to our inquiry, this aspiration is a long way from being realised. For Dr Keri Thomas, a GP with specialist knowledge of palliative care, patients at present had little real choice: "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."[16] The gap between where patients wish to die, and where they actually die, is well demonstrated in a table drawn up by Irene Higginson, Professor of Palliative Care and Policy, at Guy's, King's and St Thomas' School of Medicine, King's College London:

Preference for place of death,
%
Where people with cancer die,
%
Where people die -
all causes,
%

Home 56 25 20

Hospice 24 17 4

Hospital 11 47 56

Nursing/Residential Home 4 12 20

Other/don't know 5 - -

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 Services.

18. Marie Curie Cancer Care, who have recently conducted a survey of choice issues, concluded that there were many reasons why so many patients died in hospital rather than at home, including:

family/carer fatigue
lack of information and support
ignorance on the part of health professionals
unco-ordinated care with out-of-hours cover being a particular problem; it was also difficult to co-ordinate so many health professionals across so many boundaries
patient ignorance of how the system worked
patients changing their mind as their health deteriorated
patients developing symptoms which become unmanageable at home.[17]

19. The National Council for Hospice and Specialist Palliative Care Services additionally identified the lack of specialist support staff as a key factor underlying the inability of so many cancer patients who wish to do so to die at home.[18]

20. While we strongly support measures to improve patient choice and empowerment, and find it disheartening that people wishing to die at home often fail to realise that wish, we recognise that some caution is required in interpreting surveys such as that conducted by Marie Curie. Their analysis was based on a random survey of people, many of whom would have been healthy, with an unfocused view of the desirable place of death. It is not clear whether the same questions put to those suffering from life-threatening illnesses would produce similar results. A number of submissions emphasised that choice in palliative care was a complex matter, easily over-simplified. Dr Ann Morris, from North Lincolnshire Primary Care Trust (PCT), pointed to recent Macmillan research which showed that "patients and relatives were subject to changing their minds as situations changed".[19] Hospice in the Weald cautioned that "the belief that most patients can be treated at home is overstated", noting their experience that many patients' initial preference for dying at home changed as their situation deteriorated. Marie Curie itself cited a survey where most respondents said they would be likely to support the choice of someone they knew to die at home but "when asked to say realistically whether they feel capable of supporting a dying friend or relative, less than half say they do".[20] St Christopher's Hospice, the pioneer of the modern hospice movement, drawing on experience of almost 40 years of patient care, remarked that: "Choices [are] made throughout the patient's journey, not only by the patient but also by their carers, families and others around them."[21]

21. Choice in services cannot be divorced from some of the other areas of our inquiry. If the provision of services is not equitable, patients will sometimes be denied any choice at all. If communication of the available options is poor, patients and carers will not be able to exercise informed choice. Choice is also linked to issues of quality and training. Many health professionals are poorly informed of the options open to their patients. According to Sam Ahmedzai, Professor of Palliative Care Medicine, Clinical Sciences Division at the Royal Hallamshire Hospital in Sheffield, health professionals have "differing and incomplete awareness of the benefits of palliative care" and often fail to provide the early referral that can alleviate or prevent later problems.[22]

22. 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.

23. 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.

24. A possible means of securing additional support has been suggested by Marie Curie Cancer Care. The charity commissioned a study from Professor David Taylor and Sarah Carter of the School of Pharmacy, University of London, to examine how people's preferences to die at home might be realised.[23] This analysis suggested that 14 days of home care, comprising seven GP visits, 28 hours of other health and social care, and 50 hours of Marie Curie nursing would cost around £2,500, while the last 14 days in hospital cost £4,200.[24] Marie Curie invited us to consider their analysis. We think some caution has to be exercised in interpreting these figures. There are relatively few beds in hospitals which are used exclusively for dying patients. Any increase in available beds as the result of such a move would be small on a hospital-by-hospital basis. There would be little, if any, prospect of closing beds and overheads would largely remain the same. However, we believe there may well be merit and appeal in what Marie Curie suggest, even if there is a real cost to be met. Tom Hughes-Hallett, Chief Executive of Marie Curie, frankly admitted that there would be no "direct saving" but that an investment of slightly less than £100 million to meet the annual costs of dying at home would release £200 million of resources in hospitals for other acute services.[25] This economic benefit was not what Marie Curie had expected when commissioning the report.[26]

25. Department of Health officials and Ministers told us that they thought the Marie Curie analysis was indeed worthy of further study. The National Cancer Director, Mike Richards, made reference to this research and suggested that work was needed to see whether the amount of money that could be saved by transferring patients into the community might mean that no additional funding was required.[27] Melanie Johnson, the minister with direct responsibility for palliative care as part of her remit for cancer, similarly described the Marie Curie analysis as "very interesting and powerful".[28] Dr Stephen Ladyman, our other ministerial witness speaking in respect of his responsibilities for children and older people, went so far as to suggest that there were potentially "massive savings to be made by our being more proactive about, first of all, stopping people getting into hospital in the first place and also delivering far more care at home—both healthcare and social care", and that such a shift would be a "major theme in the vision for adult social care".[29]

26. 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.

Support services including domiciliary support and personal care

27. In the delivery of palliative care in the home, a crucial burden falls on support services, whether from the statutory sector, the voluntary realm or from friends and relatives.

28. The Health Service Commissioner for England described how carers sometimes felt disempowered by being denied the opportunity of caring for their loved ones at home. Carers were subject to enormous burdens, however, and needed considerable support if they were to be able to help care for patients at home.[30] As the Royal College of General Practitioners put it, "being an informal carer is a full time job, 24 hours a day, and often without a break".[31] The representative organisation of the hospice movement, Help the Hospices, suggested that there were difficulties in securing continuing care funding, with some Strategic Health Authorities (SHAs) applying rigid criteria for life expectancy, such as the patient having fewer than eight weeks to live, as a condition of funding such care.

29. The Association of Hospice and Specialist Palliative Care Social Workers pointed to serious shortfalls in out-of-hours cover. Night care was seldom available except for Marie Curie Nurses who were provided on a strictly time-limited basis. Day care support was normally provided by agencies and not specialist staff: some patients had different carers every day. Some local authorities would not provide help with cleaning and housework.

30. Several submissions pointed to the model of palliative care being created through legislation in Canada. Under the new Canadian National Strategy, family members are entitled to take six weeks compassionate leave during which their job and income are protected; and patients have access to a 'virtual hospice' online, which includes a chat room, an online nurse practitioner and online consultants. Describing the Canadian model, Christine Shaw for Help the Hospices emphasised its flexibility. The six weeks paid leave, for example, could be shared between a range of relatives or friends.[32] Tom Hughes-Hallett for Marie Curie pointed to the inequities of the current system within England for supporting carers, noting that one of his organisation's own staff had had to report himself off on long-term sick leave to "support his mother in death", a situation Mr Hughes-Hallett described as "a scandal".[33]

31. In articulating why it was difficult for patients to achieve their wishes in dying at home, Dr Ladyman argued that the role of the family in providing care for elderly and frail members of society was diminishing, such that "it seems that we no longer want to care for each other in extremis".[34] While we acknowledge that the extended family living within the same household is generally less prevalent now than it was fifty years ago, there are nonetheless still almost six million carers in Britain. Even now, one in six households contains a carer, and one in eight adults (13%) is a carer. Some 1.7 million people are heavily involved in care, giving at least 20 hours of care per week.[35] There are, of course, significant challenges to the caring role of the family, such as the geographical dispersal of family members; the greater mobility of modern households that reduces the likelihood of people living in close proximity to relatives; and the complexity of relationships in partnerships, through the breakdown of marriages and remarriages.

32. We questioned ministers on whether they would contemplate introducing into England some of the measures being taken in Canada. We specifically asked Melanie Johnson whether she would examine the Canadian policy of six weeks paid leave for carers. She told us that this was not under consideration at the present time.[36] However, Dr Ladyman explained that the Department was about to engage in a series of consultations with employers and carers' groups, with a view to the possibility that the Government "may wish … to legislate on extra rights for carers in the workplace".[37] Dr Ladyman noted that many of the biggest companies, such as BT or British Gas, were "very focused on the need to involve carers in their workforce" so as to allow them to achieve the balance between the roles of carer and worker.[38]

33. 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.

34. 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.

35. 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.

Personal care

36. A familiar theme of Health Committee inquiries has been problems arising from the demarcation between health and personal social care. In a report of the predecessor Committee in 1998 it was noted that barriers between the two services "frustrate the goal of seamless service provision and often appear confusing to the users of services".[39]

37. The Association of Hospice and Specialist Palliative Care Social Workers noted that the boundaries between health and social care in palliative care were often "blurred" and "contested".[40]The Association of Directors of Social Services gave the example of those with progressive neurological conditions who were not entitled to NHS continuing care and instead had to undertake means-testing to qualify for social services care.[41]

38. A number of witnesses commented on problems caused by the health/social services divide. This was well articulated by Tom Hughes-Hallett for Marie Curie:

39. Dr John Wiles, for the Association of Palliative Medicine noted the particular problem with delays in assessment, where the "process of supporting" patients wishing to die at home was often the weakest link. Suzy Croft of the Association of Hospice and Specialist Palliative Care Social Workers explained that, in the very limited number of cases where a housing transfer was needed, it was "almost impossible" for this to be arranged in time, and that sometimes people "get an offer after they die".[43] In its written evidence the Association noted that some patients were offered different carers every day and that some carers would not provide help with cleaning and other housework.[44]

40. Dame Gill Oliver for Macmillan, suggested that things needed to go further than just having people sitting round a table together. In her view what was required was "a single point of entry":

Somebody affected by cancer, someone requiring palliative care does not need to think 'Do I have to go to a health person or to a social care person?'. They go to their contact and the rest will happen. It is going through one door, and that is the ideal that we will be working towards.

41. Dr Michael Cushen, medical director of an independent hospice, noted "a serious crisis in the provision of social care", with patients in homes and hospices "waiting for unacceptable periods both for Social Services assessments and for a placement of carers within their homes".[45] Tricia Holmes for the Motor Neurone Disease Association described how her organisation had funded co-ordinators, employed by the NHS, to take on some of the duties of a specialist nurse in order to try to overcome the "chasm" between health and social care. She, too, thought there should be "a single point of contact".[46]

42. Most of the witnesses we questioned were firm in their support for much greater integration of health and social services. While Professor Mike Richards, the National Cancer Director, favoured pooled budgets, others went further. Sue Hawkett, Team Leader for Supportive and Palliative Care at the Department of Health, described the current situation as "not always very helpful at all" and called for a system that was "totally integrated".[47] Christine Shaw for Help the Hospices agreed that integrating health and social care commissioning would be "a very valuable way forward"[48] and Tricia Holmes felt that such a step would "make a lot of difference".[49] Phillip Hurst from Age Concern cautioned that such a fundamental structural reform would be very "distracting" but agreed that abolishing means-testing for personal social care would be a very positive measure.[50]

43. The health and social care needs of people receiving palliative care are often complex and closely interwoven. However, we are struck by the absence of social care partners from many local cancer and palliative care networks. Moreover, there are still too many accounts of people trying to find their way through the health and social care maze and finding a chasm opening up between the two services.

44. 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.

45. One area in which the boundary between health and social care is especially blurred and contested is that of continuing care. We are aware that the Department has required the 28 SHAs to review and develop eligibility criteria for NHS continuing healthcare that will operate on an SHA-wide basis incorporating all their constituent PCTs. In addition, following a report from the Health Service Commissioner in 2003, SHAs and their partners have also been required to review whether the application of earlier criteria has resulted in patients being wrongly denied continuing care, and where this is the case, to make appropriate recompense. This work should have been completed by 31 March 2004. The Minister told us that the results of the reviews were still being examined, and that work was taking place to compare the criteria developed by the SHAs and to see whether they were diverging in their approach to palliative care. However, Dr Ladyman observed that "they ought not to be diverging too greatly".[51] He assured us that the results of the reviews would be published as quickly as possible.[52]

46. We note that the 2001 guidance on continuing health care made it clear that patients who require palliative care, and whose prognosis is that they are likely to die in the near future, qualify for NHS continuing care. The Department has emphasised that eligibility should be based on need, and not on an anticipated time to death (which is notoriously hard to predict). Other witnesses, however, painted a worrying picture, and drew attention to the different time limits employed across SHAs in their specification of eligibility for continuing care on palliative care grounds. As Christine Shaw for Help the Hospices commented, while national guidance says that time limits should not be applied:

47. 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.

48. Witnesses supported the case for closer integration of health and social care, not only at the level of local commissioning, but also in terms of national structures and removing the distinction between 'free' NHS services and means-tested social care. We explored this issue with the Minister, who told us that the question of "seamless services" would be a key theme in his forthcoming "new vision for adult social care".[54] We welcome this renewed focus. However, Dr Ladyman also indicated that he was dubious about the importance of structural change in bringing about seamless care.

49. 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.

Delayed discharges

50. A previous Health Committee inquiry into Delayed Discharges opposed the principles behind the reimbursement proposals relating to delayed discharges (as they were at the time), and highlighted the potential for "buck passing and mutual blame between health and social care". [55] However, the Community Care (Delayed Discharges etc.) Act received Royal Assent on 8 April 2003, and the reimbursement arrangements were introduced in shadow form from 1 October 2003, becoming fully operational on 5 January 2004. The legislation applies, in the first instance, only to patients in acute hospital beds. Various witnesses drew our attention to the knock-on effects of this discrepancy for hospice patients. The National Care Standards Commission gave a case study as an example of the sort of problems this could create:

51. Christine Shaw, for Help the Hospices, remarked:

52. The Department acknowledged that patients receiving palliative care in hospices or specialist palliative care units are excluded from the definition of acute care within the Act, but stressed that their discharge should still be in accordance with good practice it disseminated in January 2003.[58]

53. 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.

12 DoH Press Notice 26/12/03 Back

13 World Health Organization, The Solid Facts: Palliative Care, ed Elizabeth Davies and Irene Higginson, 2004, p17 Back

14 Ev 7 Back

15 Building on the Best, para 69 Back

16 Ev 214 Back

17 Ev 67 Back

18 Ev 280 Back

19 Ev 231 Back

20 Ev 259 Back

21 Ev 254 Back

22 Ev 180 Back

23 Valuing Choice-Dying at Home: A case for the more equitable provision of high quality support for people who wish to die at home, 2004 Back