The recent 2016 NICE guidance ‘Motor Neurone Disease: Assessment and management’ describes a model of multi-disciplinary holistic care. This includes providing opportunities to plan for end-of-life care. The Mental Capacity Act 2005 clarified the legal status of advance care planning but patients need to be in receipt of accurate information to be able to make plans, especially if they have not experienced treatments they might wish to refuse. When the hospice started an initiative to increase access to patients living with neurological conditions a number were referred for advance care planning. At the time (2011) the ‘Preferred Priorities for Care’ document was in use but staff had little experience in discussing or documenting patients’ decisions regarding future refusal of treatments. This took place when patients visited the local Motor Neurone Disease (MND) Care Centre but for patients living with other progressive neurological conditions, it was unclear if they had any opportunities at all. A lead consultant was referred all the patients who might want to write an advance care plan. In order to ensure the resulting document would be ‘valid’ the consultant created a decision-aid that contained instructions on what details to include. To ensure these decisions were ‘applicable’ examples of scenarios involving potentially life-saving treatments were laid out for the patient to consider. The decision-aid underwent a number of revisions as exemplars were added to illustrate how the patient might document their decisions.
To date, 18 patients have completed combined Advance Decisions to Refuse Treatment/advance statements. One patient completed but never signed, one documented his decisions informally. The decision-aid, an analysis of the decisions the plans include, how these vary across the different diseases, who supported the patient in writing it, whether they have been revised and reflection on our experiences will be displayed in this poster presentation.
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