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CANCER IN SCOTLAND: ACTION FOR CHANGE

06. PALLIATIVE CARE

AS DEFINED BY THE WORLD HEALTH ORGANISATION, PALLIATIVE CARE IS NOT SYNONYMOUS WITH 'TERMINAL' CARE AND IS NOT RESTRICTED TO CANCER.

Palliative care is an integral part of all clinical practice which takes as its starting point the quality rather than the quantity of life remaining. Palliative care needs can arise at any stage of a patient's care, and embrace psychosocial, emotional and spiritual issues surrounding life-threatening illness as well as the management of pain and other distressing symptoms.

Everyone, patients and carers, should be aware of services from which they might benefit but we know that palliative care is not well understood by all patients and their carers, who too often equate it with end-stage disease and terminal care. As a result, many patients may be denied optimal and timely symptom control and support.

Our National Health indicated that we are committed to ensuring that effective palliative care services are available to all who need them.

Over recent years significant progress has been made in the establishment and development of palliative care services for cancer. But more needs to be done.

Integration of planning and delivery of services

Co-ordinated planning is critically important, as is integration of all service providers. The voluntary sector contribution to palliative care cannot be over-estimated. Through provision of specialist hospices, patient support and information, education and training of staff and targeted funding of medical, nursing and other professional support posts, voluntary organisations deliver a wide variety of patient care and support services. Their active involvement in cancer MCNs and regional cancer advisory groups is therefore essential as they, along with the NHS, must consider how and where they deliver services and participate as partners in service redesign through MCN led cancer collaboratives.

• By March 2002 all NHS Boards should have undertaken comprehensive needs assessments for palliative care including the need for joint working across care sectors and agencies.
• With minimum or no delay or obstruction to their progress through the care pathway, people with cancer should have ready access to palliative care services at an appropriate level to meet their needs.
• Through integrated planning and to help minimise delay in arranging appropriate care, clear joint working arrangements and/or funding should be agreed between NHS Boards, social work agencies and the voluntary sector.
• In each of the above cases specific consideration is required of the needs of young adults for palliative care.

Managed clinical networks for palliative care and symptom management

There is compelling evidence that avoidable pain continues to be experienced by cancer patients. The development of MCNs for palliative care which are primary-care led will help ensure that national clinical guidelines such as the SIGN guideline on cancer pain management are implemented and audited.

• Implementation of the SIGN guideline across all clinical settings will be a major objective of palliative care and cancer MCNs.

Symptoms other than pain can also be distressing for patients, but the evidence base is currently insufficient to support production of national clinical guidelines. Nevertheless, local and/or regional guidelines can and are being developed to ensure awareness of current best practice. The combination of the SIGN guidelines, locally agreed protocols for other common and distressing symptoms and CSBS core standards provide a framework for MCNs to improve clinical care.

The research base underpinning palliative care remains underdeveloped due to inherent practical and ethical difficulties of conducting research among a patient population with advanced and unstable clinical conditions. Careful prospective audit of protocols and guidelines and well-designed qualitative research can make important contributions to defining best practice.

• The Chief Scientist Office continues to encourage the palliative care community to bring forward proposals for research funding.

Standards for palliative care

With increases in the nursing home population likely to continue, there is a need to ensure that the palliative skills of nursing home staff are continuously updated. Two Scottish hospices are working with their local nursing homes to determine how best they can be helped to improve standards.

• The National Care Standards Committee will ensure that palliative care is included in the standards they set.
• Core standards for palliative care are integral to the service standards developed by the CSBS for the management of the commonest cancers. CSBS is currently visiting Trusts to assess services against these standards for breast, colorectal, lung and ovarian cancers.
• Standards for specialist palliative care are currently being developed by the CSBS and are expected to be published soon.

In most cases the information required to support continuous quality improvement will be provided from existing sources such as Hospice Activity Data System (HADS).

Specialist palliative care

A small number of patients require specialist palliative care from an experienced team whose core activity is dealing with more complex problems, and access to such advice or care should be widely available.

Only one cancer centre in Scotland has a multi-professional specialist palliative care team, the others having differing levels of specialist nurse input or
part-time medical input, usually from a local hospice. While most acute hospitals have some palliative care support, many rely on a single nurse specialist with sessional medical support, again usually from the local hospice. Single-handed practitioners in any discipline leave the service they provide vulnerable to breakdown during episodes of illness or holiday and the practitioners themselves vulnerable to unsustainable demands and stresses because of their professional isolation.

• Single-handed specialist nurses providing a service interrupted by holidays or illness cannot provide a sustainable service, and NHS Boards should ensure that explicit arrangements are in place to provide continuity of care.
• Regional Cancer Advisory Groups will work with the Scottish Partnership Agency for Palliative and Cancer Care to ascertain current levels of specialist palliative care input in hospitals and to identify models of good practice.

Providing care at home

Many studies have suggested that far more patients than currently do so would choose to die at home if the appropriate care was available. Provision of 24-hour care and current arrangements for the provision of support at home vary across the country.

The Role of Hospices

Hospices provide a range of invaluable specialist palliative care services and support for people with cancer. Many are operated by the voluntary sector and work in close partnership with NHS Boards and local NHS services to ensure appropriate care is provided to those who need it.

We will ensure these vital partnership arrangements with the voluntary sector continue to develop in order to further enhance the provision of palliative care across Scotland.

Improving skills through education and training

There is clear evidence of a lack of understanding of palliative care principles amongst healthcare professionals. Attitudes are formed early in a clinical career, and, while recognising the pressure on time in all undergraduate teaching, the philosophy of palliative care, with its emphasis on good communication, patient inclusion and autonomy and on patient-determined outcomes, emphasise its claim to greater attention than it currently receives.

• All professional bodies responsible for undergraduate training of healthcare professionals should review their curricula to ensure that their graduates have a clear understanding of palliative care principles.

Improving the services and skills available across palliative care teams must also be addressed. Professions Allied to Medicine (PAMs) play a major role in palliative care provision and their training should be developed to allow them to maximise their contribution. Pharmacists are pivotal to ensuring safe and effective use of medication, and hospital and community pharmacists should be encouraged to develop their role as a resource to prescribers and patients.

Primary care teams are key practitioners and co-ordinators of palliative care. GP facilitators and link nurses already in place provide ample evidence of the enthusiasm which exists in this area. We must continue to create opportunities to enhance collaborative working and disseminate best practice.

Primary care teams are already involved in the co-ordination of palliative care. As patient demand grows so will the demands on the healthcare team. Ensuring a greater understanding of palliative care within medical training is therefore important for the future.

• NHS Boards should therefore encourage schemes which seek to develop knowledge and skills in palliative care by enabling established GPs and GP registrars to spend time working in a specialist palliative care unit.
• All healthcare professionals should practise according to general palliative care principles, and continuing professional development in all aspects of palliative care should be actively supported by NHSScotland. All NHS staff should be enabled to fully utilise the educational resources provided by independent hospices and other recognised organisations.

Workforce planning

Within palliative care there are serious shortages of staff in all related disciplines. Since newly-trained staff tend to wish to stay in the areas in which they have trained, there is a need to ensure that training places are available in Scotland to meet rising demand and patient expectations.

• Medical and other palliative care workforce requirements will be reviewed by the proposed Human Resources Sub-Group of the Scottish Cancer Group to ensure that an appropriately skilled workforce will be available to meet defined needs.
• Regional Cancer Advisory Groups must include palliative care requirements within their workforce planning arrangements.

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