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Feeding at Risk (FAR) Project at Heart of England NHS Foundation Trust Jodi Allen Dysphagia Specialist Speech & Language Therapist jodi.allen@heartofengland.nhs.uk Suzanne Wong Specialist Dietitian suzanne.wong@heartofengland.nhs.uk

Overview Provide an overview of the Feeding at Risk project initiated at Heart of England NHS Foundation Trust which aimed to improve communication of feeding decisions between care providers. Explain the process of development behind the project Present the principles and rationale Share good practice guidelines and documentation Demonstrate application of the project outcomes in case studies

What do we mean by Feeding At Risk (FAR)? A decision made to provide a patient with oral intake despite a high risk of aspiration with no effective compensatory strategy identified.

Why? Patients own decision Lack of evidence to support alternative feeding

Who? Last few weeks or days of their life Managed palliatively Dysphagia is a natural step in their diagnosis Those with capacity to decline non-oral feeding i.e. any patient with dysphagia

Why the FAR project? Increasing concerns over the decision-making process, communication & documentation of feeding decisions made in the acute hospital Inconsistency Transparency Rationale Communication

Anecdotal evidence Working group The Story so FAR... Survey Set aims & action plan Pilot Reevaluate Roll out

The Paperwork Guidelines for Healthcare Professionals Proforma (to be kept immediately behind the DNAR form) Advice leaflets for healthcare workers Advice leaflets for patients/relatives GP report template

FAR Proforma

The Pathway / DON T KW Has a formal decision to feed at risk been made previously? Consider: Patient s previous wishes, any advanced decisions/directives, patient diagnosis/distress/prognosis, Best Practice Guidance (eg. NICE, RCP, GMC) Involve MDT, the patient s family, MDT (e.g SLT, Palliative Care Team, Dietitians, Clinical Nurse specialists) and the patient as much as possible. Involve an IMCA as required. Is alternative non-oral feeding appropriate? Seek second opinion from Nutrition Team Is alternative non-oral feeding appropriate? Alternative non-oral feeding commenced UNSAFE SWALLOW Does the patient have capacity to make their own decision about feeding/nutrition/hydration? Alternative non-oral feeding commenced Refer to SLT for feeding at risk recommendations and ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED Are there new or different concerns about the patient s swallowing or capacity? Provide patient with information re risk/benefit/consequences of feeding decision. Patient makes informed decision re feeding Enteral OR Is it appropriate to feed the patient at risk? Consider such issues as whether patient is adequately alert or distressed when fed. Continue as usual. PLEASE ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED/ UPDATED. Refer to SLT for feeding at risk recommendations and ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED Oral Medical management as per Best Practice Guidance or HEFT End of Life Pathway (as appropriate).

The Pathway / DON T KW Has a formal decision to feed at risk been made previously? Consider: Patient s previous wishes, any advanced decisions/directives, patient diagnosis/distress/prognosis, Best Practice Guidance (eg. NICE, RCP, GMC) Involve MDT, the patient s family, MDT (e.g SLT, Palliative Care Team, Dietitians, Clinical Nurse specialists) and the patient as much as possible. Involve an IMCA as required. Is alternative non-oral feeding appropriate? Seek second opinion from Nutrition Team Is alternative non-oral feeding appropriate? Alternative non-oral feeding commenced Enteral UNSAFE SWALLOW Does the patient have capacity to make their own decision about feeding/nutrition/hydration? Alternative non-oral feeding commenced Refer to SLT for feeding at risk recommendations and ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED Oral Are there new or different concerns about the patient s swallowing or capacity? Provide patient with information re risk/benefit/consequences of feeding decision. Patient makes informed decision re feeding OR Is it appropriate to feed the patient at risk? Consider such issues as whether patient is adequately alert or distressed when fed. Continue as usual. PLEASE ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED/ UPDATED. Refer to SLT for feeding at risk recommendations and ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED Medical management as per Best Practice Guidance or HEFT End of Life Pathway (as appropriate). End of life

Making a decision to continue Patient s wishes Patient s distress Diagnosis / prognosis Best Practice Guidance MDT discussion with oral intake

Best Practice Guidance Royal College of Physicians (2010)

General Medical Council (2010) Mental Capacity Act 2005 Code of Practice (2007)

100 90 80 70 60 50 40 30 20 10 0 Project outcomes Before FAR project After FAR project

Case example: Clara PMH 76 year old female Two CVAs Poor rehabilitation potential after second stroke - discharged to a nursing home, bed-bound on long-term modified diet & fluids Receptive & expressive aphasia but uses AAC to participate in functional conversation Has previously declined enteral feeding HPC New admission to hospital with weight loss & chest infection after most recent CVA Admitted to respiratory unit - diagnosed with aspiration pneumonia Known dysphagia & associated weight loss/dehydration

The Situation Placed on IVI abx & NBM SLT bedside assessment suggestive of aspiration even on heavily modified consistencies Medical team keen to re-start oral feeding & discharge home once over acute infection (aim 36-48 hours)

The Issues Acute dysphagia on a background of chronic dysphagia Risk factors for aspiration in addition to dysphagia Continues to decline enteral feeding deemed to have capacity What next?

The Pathway / DON T KW Has a formal decision to feed at risk been made previously? Consider: Patient s previous wishes, any advanced decisions/directives, patient diagnosis/distress/prognosis, Best Practice Guidance (eg. NICE, RCP, GMC) Involve MDT, the patient s family, MDT (e.g SLT, Palliative Care Team, Dietitians, Clinical Nurse specialists) and the patient as much as possible. Involve an IMCA as required. Is alternative non-oral feeding appropriate? Seek second opinion from Nutrition Team Is alternative non-oral feeding appropriate? Alternative non-oral feeding commenced UNSAFE SWALLOW Does the patient have capacity to make their own decision about feeding/nutrition/hydration? Alternative non-oral feeding commenced Refer to SLT for feeding at risk recommendations and ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED Are there new or different concerns about the patient s swallowing or capacity? Provide patient with information re risk/benefit/consequences of feeding decision. Patient makes informed decision re feeding OR Is it appropriate to feed the patient at risk? Consider such issues as whether patient is adequately alert or distressed when fed. Continue as usual. PLEASE ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED/ UPDATED. Refer to SLT for feeding at risk recommendations and ENSURE FEED AT RISK PAPERWORK HAS BEEN COMPLETED Oral Medical management as per Best Practice Guidance or HEFT End of Life Pathway (as appropriate).

The Outcome Patient decision to Feed at Risk Involvement of discharge destination & family Long-term management agreed re hospital readmissions Clearly communicated to GP in FAR discharge report and via medical team discharge letter

Clara s FAR form Clara able to understand, retain, weigh up and consistently communicate her decision not to have enteral feeding, event for a short-term period. Understands impact of aspiration from oral feeding and consequences including possible death. N/A patient has capacity to make the decision for herself Sarah Lynch daughter John Smith - son 01/02/13 Clara also communicated that she did not want re-admission to hospital for issues specifically related to aspiration. The family and team agreed with this. Clara would have antibiotic treatment in the community via her GP but is not for acute hospital admission.

A fully informed MDT Patient at the centre FAR Decisions Clearly documented Communicated across settings Involving discharge destination Future planning

Leadership Alliance for the Care of the Dying People (LACDP) Five priorities of care for the dying person Duties and Responsibilities for Heath and Care Staff (Annex D)