Policy responses and statements

Name of organisation:: The Scottish Parliament
Name of policy document:: Proposed Palliative Care (Scotland) Bill - A proposal for a Member's Bill to require needs-based palliative care to be available on demand
Deadline for response:: 9 March 2009

Background: The objective of this proposed Bill is to secure access to high-quality palliative care for everyone in Scotland on the basis of need. The proposal aims to secure this by placing local NHS Boards under a statutory obligation to provide that care and set up reporting arrangements so that the quality of care provided can be monitored. Evidence from professionals in the field, as well as the experiences of patients and families, strongly suggests access to palliative care is inequitable across Scotland and its quality is variable. Evidence also strongly suggests that patients with non-cancer and other life-limiting illnesses, who can greatly benefit from palliative care, have less access to it. Five case studies are attached to this paper, which illustrate well the issues surrounding access to, and quality of, palliative care.

The population of Scotland is ageing and with that process there will be an increasing incidence of serious, complex, chronic illness towards the end of life.

The need for good-quality palliative care for all who need it, therefore, will become all the greater in future years.

This paper sets out the background to the proposed Bill and provides a definition of palliative care, indicating what best practice would include. It gives examples of problems with current provision and indicates how this proposal would improve the availability and quality of palliative care. Respondents are invited to make any points you think would be relevant to the proposal.

COMMENTS ON
THE SCOTTISH PARLIAMENT
PROPOSED PALLIATIVE CARE (SCOTLAND) BILL - A PROPOSAL FOR A MEMBER'S BILL TO REQUIRE NEEDS-BASED PALLIATIVE CARE TO BE AVAILABLE ON DEMAND

The Royal College of Physicians of Edinburgh is pleased to respond to the Scottish Parliament on Proposed Palliative Care (Scotland) Bill - A proposal for a Member's Bill to require needs-based palliative care to be available on demand.

The College response to this consultation has been prepared from comments received from Fellows including those working in the fields of specialist palliative care, general practice and geriatric medicine.

Aim of the proposed Bill

“The objective of this proposed Bill is to secure access to high quality palliative care for everyone in Scotland on the basis of need”. This is already the aim of palliative care services and organisations across the country and in fact is a priority of the Scottish Government as evident by the recent 2008 publication “Living and Dying Well”. There is general approval of the intent to highlight the needs of people with life limiting illness, to improve palliative care and make access to services more equitable and the college is active in promoting education in this field. However, there is concern that imposing a statutory obligation on NHS boards would distort service priorities and potentially create greater inequity. Problems with definitions, the necessary identification of cases and the provision of evidence would make such legislation unworkable and would be a waste of resources better spent on education and the provision of care.

Defining palliative care

One of the main difficulties with this consultation paper is the difficulty of defining the constituency to whom the Bill would apply. The WHO definition is necessarily broad and inclusive, but has no time scale and could be applicable to any patient whose trajectory of disease may involve many years of living with a long-term and often progressive disease. There is therefore a failure to define just who would be eligible for “palliative care”, what palliative care is, who will provide it, how exactly it will be accessed “on demand” and how the most vulnerable groups will have their needs met. Towards the end of the consultation document in Paragraph 36 it is suggested that patients affected by the proposed legislation would be those with all “end of life chronic diseases”. This is not an easily recognisable concept. Many chronic diseases will eventually cause a persons death, but recognising the “end of life period” is less straightforward. It may be that an expected prognosis, perhaps of 12 months or less (“where the health care team would not be surprised if the patient died in the next year”) would become the “entry criteria for high quality palliative care entitlement”, but this would be very difficult to get right, missing many whose death came more suddenly than expected and also ignoring the needs for palliative care over several final years for conditions such as chronic respiratory or neurological illnesses. A more inclusive approach to entitlement, from diagnosis of any chronic progressive illness, would mean huge numbers of patients included over potentially decades of care. It follows that good quality palliative care is not just about access to a range of specialist services according to need, but also has to recognise that most palliative care will be and is delivered by generalists and mainly in primary care. Additionally, secondary care will play a crucial role, not just in diagnosis and treatment but also in some end of life care, as some patients do choose hospital as a preferred place of care. There is thus a considerable overlap between initiatives to enhance the care of people with long-term conditions and palliative care.

Extending palliative care to all progressive life limiting conditions

Discussions of the definition of palliative care necessarily leads into this second question about the extension of palliative care to all those with progressive life limiting conditions. The College and clinicians in general have recognised for some time the need to extend the principles of palliative care to other long term conditions and indeed the College has previously organised a symposium entitled “Palliative Care – Beyond Cancer” and is actively supporting the integration of palliative care teaching into specialist teaching e.g. at our recent neurology conference. The College believes that patients and families living with advanced progressive illnesses should expect the same high quality care that is given to other patient groups. Their needs need to be considered in more depth than previously, but this should be within overall health care planning and integrated with many other relevant service developments. The list of diagnoses given in Paragraph 6 is far from exhaustive and Paragraph 41 of the consultation endorses “a wider access to palliative care based on need, not diagnosis”. This again highlights the difficulty in defining the scope of this proposed Bill.

Indicators of care

Whilst basic information on place and cause of death might well be recorded there would be major difficulties in documenting the other indicators suggested. How well symptoms have been assessed and managed is a subjective question, only truly answerable by the affected person. The “number dying in their place of choice” would be more difficult to determine than might initially be supposed. Even if this sensitive matter had been discussed and wishes recorded, patients may change their mind about place of care or death once an illness develops. The “stage at which palliative care was made available” is also very difficult to define. If a holistic approach has been adopted from the time of diagnosis, any attention to symptoms or other supportive needs could be defined by staff as “palliative care”. Patient or family satisfaction surveys would seem to be a more reliable indicator of good care than the proposed list of data. It should be noted here too that the good practice initiatives identified in Paragraph 23 are already well advanced. The “Gold Standards Framework” is used by around 80% of general practices throughout Scotland and the UK. As part of “Living and Dying Well” a new “directly enhanced service” is being funded by the Scottish Government so that GP’s are funded to carry out better generalist palliative care. The indicators under the scheme include the compilation of a cancer register, the identification on non-cancer patients, the formation of assessment plans within a 2-week period, the passing on of information to out of hours services and the use of an integrated pathway at the end of life. These indicators are linked to payments for GP practices and the challenge here should be to ensure that this is not simply a box ticking exercise, but that the actual care is provided well by generalists. This is again about education and support and it is difficult to see how the proposed Bill would enhance this process.

Funding implications

It is very difficult to comment on the funding implications given the difficulties of definition and scope referred to above. Improving specialist palliative nursing skills in both primary and secondary care settings and providing higher levels of support to general practitioners will be important, but there are also implications for hospital support, specialist palliative care services, and social and other services which also provide support to families and patients in the final stages of life. Resources are and always will be under pressure, and debate about how best to allocate these within NHS Scotland is to be welcomed.

Involvement for other organisations

Paragraphs 34-39 of the consultation list a number of organisations and agencies. The Annexe also lists the organisations that have been sent details of the consultation. We were surprised to note that the Royal College of General Practitioners was not included in this list and there was no involvement of specialist societies such as The British Geriatric Society. The provision of education and training would involve Universities and Royal College bodies both in nursing and medicine.

Other comments

The consultation document makes reference to various other publications throughout but not all are named or their authors acknowledged. The Scottish Partnership for Palliative Care (SPPC) report referred to in Paragraph 27 is “Joined up Thinking, Joined up Care”. This project systematically investigated the experience of patients with life threatening conditions other than cancer. The 5 case studies described at the end of this consultation do not add to this well researched information. The difficulties encountered by the patients and families in these 5 cases include: poor support for a patient receiving bad news from a cardiologist, delays in response from out of hours nursing staff, practical difficulties accessing community pharmacy, and a lack of social care to allow discharge home for a young woman. Where specialist palliative care services were involved on one occasion the community palliative care nurse input failed to coordinate care satisfactorily, but for another patient, hospice care was seen to be of great benefit. In another case pain control may have been much better managed if a referral to specialist palliative care services had been made. This range of patient stories demonstrates that the whole of health and social care may contribute to the perception of good or bad palliative care. Specialist services may often be of high quality, but their input is dependent on the identification of need and subsequent access by generalist staff and the referral in itself does not guarantee seamless care when so many agencies are involved.

The Aging Population

It should also be noted that the patients included in these case studies were all aged under 70. There are several references to the aging population of Scotland in the consultation, but once again the proposals fail to recognise the broad range of needs that elderly patients have as they face a life of increasing frailty and multiple pathologies. Over 60% of deaths in Scotland occur in those aged over 75 years. As health care advances it should be anticipated that this percentage will rise. There is nothing in this draft legislation to suggest there is a clear focus on the care of the dying elderly. The medical specialty that provides specialised care for older people in Scotland – Geriatric Medicine – is not mentioned in the document and as noted above its specialist society has not been asked to contribute to the consultation. The care needs of many elderly people with chronic disease are equivalent to or greater than a younger person in the terminal phases of a progressive disease. For example, many areas of Scotland currently have difficulty providing care for patients living at home with dementia and as a result many such patients are admitted to care homes. It seems paradoxical to propose to develop a range of services to enable older people to die at home, when we have not yet consistently found the means of providing services to enable them to live at home. Palliative care principles are integral to all good quality elderly care, and are best achieved through standard setting and monitoring through established processes such as the QIS draft standards on elderly care. As presently framed this proposed legislation will not address the needs of our aging population.

Copies of this response are available from:

Lesley Lockhart,
Royal College of Physicians of Edinburgh,
9 Queen Street,
Edinburgh,
EH2 1JQ.

Tel: 0131 225 7324 ext 608
Fax: 0131 220 3939

[24 February 2009]