Providing holistic and integrated supportive and palliative care are key to improving patients’ experiences of cancer services, enabling self care and improving patients’ quality of life. The NICE guidance on supportive and palliative care should be implemented across London.103
Supportive care includes psychological, social, rehabilitation and spiritual support services for patients and their carers.
Patients should be holistically assessed to determine which supportive and palliative care services they need. Holistic assessments should be embedded in the patient pathway and take place at key stages from diagnosis onwards. Patients should be involved in the decision-making process following their assessment. They should receive information and communication in appropriate formats so they understand the risks and benefits of supportive and palliative care, and are able to make an informed decision.
Psychological care has been identified by patients as an area of need. Staff in every setting play a vital role in the psychological support of patients and should be
equipped with the skills and knowledge to assess and prevent psychological distress. The involvement of specialist social workers, counsellors, clinical psychologists and liaison psychiatry may be required for some cancer patients. While these specialist staff may have direct contact with a limited number of patients, their knowledge should influence the majority of staff. They should therefore be embedded in clinical teams to ensure that all levels of psychological need are met appropriately. Equitable access to psychological support services should be explicitly commissioned and managed in the provider network.
103
Engagement with service users has also shown that the lack of support for carers is a gap in current services. Holistic patient care should include assessments of the support requirements of carers, and keyworkers should work closely with social services to ensure that these needs are met. Palliative care, support, and rehabilitation should form part of a patient’s personalised follow-up care plan. All staff should be trained in providing generalist palliative care and recognising when to refer patients for specialist palliative care. Clinicians working in palliative care feel that some patients may prefer to opt out of any or further non-curative care when long survival prospects are improbable in favour of a shorter but, what they consider to be, better quality of life. Clinicians should be alert to the early recognition of this possibility.
Commissioners should ensure that there is provision of general and specialist palliative care close to home and at home as described in the End of Life Care Strategy.104
Evidence of outcomes: reducing admissions by providing telephone advice
Where they do not exist already, commissioners should ensure that alternative provision of general palliative care advice, such as telephone advice lines, is available to patients.
105
Hull and East Yorkshire NHS Trust’s 24-hour palliative care advice line was set up to provide support to patients in their own homes where possible and to present a detailed strategy of working which would address the chronic
inequalities within the healthcare service. The helpline was manned by staff possessing the knowledge and skills to give sound evidence-based advice to any caller requiring palliative care advice. Staff training was essential in implementing the advice line.
Implementation of the advice line led to reduced emergency admissions and bed days. An assessment of 119 calls received between January and
December 2005 revealed that just 11% resulted in patients being admitted to hospital. It was estimated that this saved 47 hospital admissions and 72 bed days.
Healthcare professionals, patients and carers who used the advice line found it invaluable. In addition, anecdotal evidence suggested that patients who did not use the line found it reassuring to know that it was available whenever they might need it.
Rehabilitation should be explicitly managed and commissioned across the patient pathway in the provider network model. National rehabilitation pathways should be used to guide the development of an appropriate rehabilitation model for each
104
Department of Health, End of Life Care Strategy: promoting high quality care for all adults at the
end of life, 2008 105
NHS Improvement, Transforming care for cancer inpatients: spreading the winning principles and
tumour site including palliative care.106
Rehabilitation should be provided in a variety of settings and as close to patients’ homes as possible. Wherever rehabilitation is provided, it should be integrated with supportive and palliative care services. All patients should have access to allied health professionals providing supportive care and rehabilitation in all settings, and at all disease stages, to ensure maximum retention of function and rehabilitation potential. This would require explicit pathways to ensure that patients reach the right professionals with the right level of expertise.
Patients should be consulted on developing a rehabilitation care plan before treatment as appropriate. Inequalities in access to rehabilitation professionals should be addressed through benchmarking against the national evidence on rehabilitation workforce requirements in relation to throughput for cancer treatment services.
To ensure that psychological support, palliative care and rehabilitation are integrated in a patient’s care (from diagnosis through to follow-up care), palliative care and rehabilitation specialists should be part of all multidisciplinary teams. The initial focus of the multidisciplinary team is the patient’s primary treatment. It is for provider
networks to decide locally whether, and how, patient cases should be reconsidered beyond this point (taking into account any relevant recommendations by NICE). Multidisciplinary teams can focus only on the diagnosis and treatment elements of the patient pathway. Provider networks should ensure that criteria for patient review at multidisciplinary team meetings are developed and standardised across the network. This would ensure that patients are reviewed by multidisciplinary teams at any part of the pathway where complex and difficult decisions need to be made. The requirement for the meetings to look beyond the treatment phase may have
significant time implications for some multidisciplinary teams, providing a further driver for consolidating and organising multidisciplinary teams meetings efficiently and effectively.
The representation of palliative care, support and rehabilitation on multidisciplinary teams is monitored by peer review. The peer review programme should consider extending the measures used to assess whether multidisciplinary teams consider the patient pathways beyond diagnosis and treatment.
8.9.1 Palliative care interventions
Patients should have access to appropriate interventions to maintain good quality of life, relieve symptoms and prevent or reduce the speed of deterioration even when the disease is considered incurable. The benefit of invasive interventions must be weighed against the burden to the patient. The NCAG report highlighted the need for clinicians to make clear to patients the benefits, and also the risks, of chemotherapy in the late stages of the disease.107
Palliative treatments such as stenting lung and gastrointestinal tumours and palliative surgery like GI bypass surgery should be carried out in elective surgery
106
Draft versions of these pathways are currently available from the NCAT along with guidelines for Supporting and improving commissioning of cancer rehabilitation services.
<http://www.cancer.nhs.uk/rehabilitation/index.htm> [accessed February 2010]
107
National Chemotherapy Advisory Group, Chemotherapy Services in England: Ensuring quality and
settings as far as possible. Patients requiring these interventions will often present as emergencies and will therefore not be suitable for the elective setting. Some palliative treatments, such as vascular stenting for superior vena cava obstruction, are complex and need to be performed at a specialist centre. Access to
lymphoedema services is not currently available to all patients and should be made available at specialist centres.
Provider networks should implement any recommendations that emerge from the ongoing pan-London lymphoedema review that are relevant to cancer services. Locally developed clinical pathways should specify which interventions should occur in which setting. Provider networks should determine pathways and protocols to allow multidisciplinary teams to make the appropriate and early referral of patients to the correct setting. To make best use of expertise and equipment, palliative surgery should be consolidated in specialist centres as appropriate.
Key recommendations:
The NICE guidance on supportive and palliative care should be implemented across London.
Holistic assessments should be embedded in the patient pathway. Holistic care of patients should contain assessments of the need for psychological support and the support requirements of carers.
Patients should be consulted on the development of a rehabilitation care plan prior to treatment as appropriate.
Palliative care and rehabilitation specialists should form part of all multidisciplinary teams. Provider networks should ensure that criteria for review of patients at
multidisciplinary team meetings are developed and standardised across the network. Complex palliative interventions should be performed at specialist centres. Locally developed clinical pathways should specify which interventions should occur in which setting.