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Providing end-of-life care for people with learning disabilities

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VOL: 102, ISSUE: 15, PAGE NO: 21

Sue Medley, RNLD, Dip Management, is learning disability nurse, Suffolk Mental Health Trust

Jackie Saunders, MSc, PGCE, RN, DN, is head of education, St Nicholas Hospice and education adviser to Help the Hospices, Suffolk;Linda McEnhill, MTheol, MSW, CQSW, Master's Practitioner NLP, is chairperson, National Network for the Palliative Care of People with Learning Disabilities and lecturer, St Christopher's Hospice

In recent years legislation and policy within palliative and cancer care and learning disability services has determined the type of care patients receive. Despite a need for overlap, policies often fail to communicate with or influence each other. At policy level this is relatively complex. However, at practice level committed practitioners can influence the process.

In recent years legislation and policy within palliative and cancer care and learning disability services has determined the type of care patients receive. Despite a need for overlap, policies often fail to communicate with or influence each other. At policy level this is relatively complex. However, at practice level committed practitioners can influence the process.

The strategies
Nursing staff are guided by the document Valuing People: A New Strategy for Learning Disability for the 21st Century (Department of Health, 2001). It highlights four key requirements for people with learning disabilities in palliative care:

- Legal and civil rights;

- Personal choice;

- Inclusion;

- Independence.

The document states that people with learning disabilities must have access to specialist services, be involved in day-to-day decisions and be active partners with those who care for and support them. It also suggests that learning disability organisations use person-centred planning (DH, 2002).

The NICE Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer recommends the Preferred Place of Care model (DH, 2004). Consideration therefore needs to be given to whether both models should be taken into account.

Person-centred planning
The basis of person-centred planning is the realisation that individuals have a personal image of their preferred future. It encourages staff to ask 'Who is this person?' and 'What opportunities could enable her or him to pursue her or his wants, wishes and desires?' Person-centred planning encourages staff to listen to, understand and support the client in achieving her or his goals. It allows staff to experience tension between what is desirable and what exists for the person now. It challenges inertia in the system, and the routines and expectations of staff that force events upon the individual that may be against their wishes. Person-centred planning takes into account social, spiritual, psychological and personal issues.

Preferred Place of Care
The Preferred Place of Care model provides a structured approach to inviting the patient to inform healthcare staff of where she or he hopes to end their life. It is recognised that skilled, sensitive communication is required when broaching this subject and that choosing where an individual wishes to die is rarely without complications. For example, a person's spouse may have a different view, the resources may not be available to enable the choice and so on. End of life decisions for a person with a learning disability can be even harder due to difficulties with communication and competency in making crucial decisions.

Both person-centred planning and the Preferred Place of Care model take into account the following:

- Dignity, quality of life and individual choice;

- Demographic details, and formal and informal support networks;

- Family involvement in determining the individual's wishes and bringing them to fruition;

- The flexibility to accommodate changes in the patient's desires;

- The ability to recognise differences in what the individual and their family or carers may want;

- Saved time and energy as the care team know the patient's choice(s) in advance;

- The need to empower a potentially vulnerable group of patients and their carers;

- Being grounded in a process that does not guarantee a successful outcome but increases the likelihood of one as staff become aware of the patient's goals, wishes and desires.

In addition both models require staff who:

- Feel confident and competent to ask difficult questions in a way that supports rather than demoralises the client;

- Have been trained to handle difficult issues that may emerge, such as fear, anger or distress;

- Will advocate for the client when their wishes are thwarted by the system.

The differences between the two approaches are outlined in Box 1.

Implications for practice
Person-centred planning encompasses the core principles of the Preferred Place of Care model but does not use nationally recognised documentation. The use of person-centred planning in a critically ill person with learning disabilities would require the use of an amended Preferred Place of Care model to prevent duplication of activity.

The introduction of the Mental Capacity Act will make it imperative for staff to ensure patients are listened to. It states that all adults are assumed to have the capacity to make their own decisions even if they require support to do so, and will formalise the assessment of capacity and ensure the findings are documented and acted on.

Assessing capacity may be time consuming, but staff will need to demonstrate that effort has been made to do so and all circumstances considered.

Discussions centred on death and dying are always difficult but the level of complexity is magnified greatly when ascertaining what a person with a learning disability understands and desires. Advanced communication skills training for cancer clinicians to date does not include specific techniques for use with people with learning disabilities (McEnhill, 2004).

Planned legal changes will require organisations to reconsider their record-keeping and multidisciplinary team working from the viewpoint of clinical governance. If person-centred planning is already in place and if Preferred Place of Care is instigated, the foundations for the individual's preferred options and sound documentation will be in place.

People with learning disabilities are living longer and will therefore increasingly experience diseases of old age. The time is right for learning disability and palliative care organisations to make links and to anticipate the future.

Professionals can no longer second guess the person's quality of life based on stereotypes, assumptions and level of disability. They will need to focus on the best interests for the patient and not those of the family and/or the service available. This will challenge palliative care practitioners whose philosophy of care includes families as integral and paramount to care planning.

The skills needed include avoiding euphemisms and waiting for the client to ask for information before giving it. These appear to be transferable to other patients with cognitive impairment such as people with dementia, neurological disease and cognitive impairment secondary to oncological disease.

This article has been double-blind peer-reviewed.

For related articles on this subject and links to relevant websites see

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