threads of continuity: progressive illness, discontinuity .... abbott wonca pr… · rapidly...
TRANSCRIPT
RCGP NI Patient Passport Project
Threads of Continuity: Progressive Illness, Discontinuity and Change; A Communication Tool.
Dr Aine Abbott
WONCA 2013.
Context: Evidence/Policy
� WHO � 2004 Palliative Care to be recognised as a public health need for the frail elderly and those with long term co-morbidities.
Context: Evidence/Policy
� WHO � 2004 � Need for a Palliative Care Approach towards Long-term Progressive Illnesses.
Communication in Advanced Illness
W. � Age 63 � Rapidly progressive dementia. � Lives with wife P. � P works part time. � W attends day care twice a week; care workers once
a day; sitters each day. Staff change often. � Daycare now discontinued because W having
simple seizures and post-ictal agitation; care staff “don’t know how to manage”.
� Over 30 staff each week involved in his care.
Communication in Advanced Illness
M. � Age 72, has advanced pulmonary fibrosis. � From China; speaks very little English; few family
and friends, all live at some distance. � Receives combination of daily domiciliary care and
respite nursing home care. � Meets many care staff; communication very limited;
interpreters occasionally.
Communication in Advanced Illness
L. � Recently diagnosed metastatic carcinoma. � Type 1 diabetes. � Supportive family providing care. � Meeting with a range of professionals: GP, district nurse,
dietitian, specialist nurse, palliative care, physiotherapy, OT, diabetologist, social worker.
� Keen to understand the challenges ahead and plan. � Finds it hard to remember all the advice given and
transmit it to her family. � Exhausted repeating her story to different people.
The Development Process: 2 years; September 2011-2013
Initiated : Professor Scott Brown, RCGP NI with Dr Jenny Gingles, PHA Chair: Professor Max Watson NI Hospice Structure: • Steering Group (GP, PHA,
nursing, community voluntary sector)
• Workshops (3; large participation)
Opportunistic and/or Planned: • Telephone • Email • Presenting to groups • Individual patients • Discussion, listening. • Piloted • Evaluated • Adapted • On-going process.
Clinical Tool
The Key Information Summary. � Electronic palliative care summary. � Built by NHS Scotland. � Core clinical detail; patients with complex clinical
need (including palliative care needs). � GP to OOH, A+E, ambulance.
The Participants
� Macmillan � NI Rare Disease Partnership � Motor Neurone Disease association � Huntington’s Disease Association � MS Society � GPs � HIV Support Centre (Positive Life) � Cancer focus NI � NI Carers Association � Alzheimer’s Society � Care of Elderly Mental Health Teams � Community Palliative Care Teams � Hospital Palliative Care Teams � Irish Hospice Foundation � All Ireland institute for Hospice and Palliative � Care � A+E staff � Brainwave (Brain Injury Trust)
• Respiratory Teams • Neurology Teams • District Nursing Teams • Hospice Staff • NI Children’s Hospice • University of Ulster • Marie Curie • BMA • Trust Bereavement Coordinators • Cruse • Further Education Colleges • Well Woman • Occupational Therapy
Practitioners • Social Work Practitioners • Health Improvement
(Promotion) Teams. • Brain Injury Rehab Teams • Patient Client Council • Dementia Teams
The Passport: Emerging Content
� 10 Core Sections. � Not all needed by everyone. � Ring Binder; allows for updating of information. � Individual customisation of content.
Content
1. All About Me: -Communication needs. -Daily Routine, diet, expression, interests. 2. I Need Help with: -Detail of care requirements: eating, dressing, safety, toileting, minimising pain, equipment which helps. 3. My Health (A4 summary from GP): -My medical history -My significant allergies
Content
4. My Medication: -Repeat medication. -Special Instructions. 5. What My Healthcare Team Need you to know: -New, evolving information and advice. -Advice on Issues which need urgent attention. 6. My Healthcare team: -Who to call. -When to call. -How to call.
Content
7. My Support Team. Contact details for my family and carers 8. Useful Resources: Support groups, websites, books etc. 9. My Medical Condition (Information leaflets). 10. In the Event of: -Advance care plans. -Power of Attorney. -ADRT. -DNACPR.
Key Issues
� Patient and family owned and largely completed and updated.
� Designated Passport keeper (patient, carer). � Added to/modified by healthcare team. � Simple, legible, concise and brief. � Most useful where condition or practical care needs
are complex. � Particularly useful where communication impaired
by illness or language.
Aims
� System of core information for disparate members of an individual’s health and care community.
� Avoids repetition by patient, family/carers. � Minimise humiliation. � Encourage conversations. � Allow anticipatory planning. � Minimise risk and prevent crisis?
Continuity of care
� Continuity of relationship. � Continuity of information. � Continuity of management.
Haggerty 2011.
Biochemistry
Cellular Systems
Organs Organ Systems (Physical Self)
Cognitive/Psychological Systems (Thoughts, Beliefs)
Social Systems (Role, Relationships)
Spiritual Systems (Questioning, Sustaining Beliefs)
Continuity and Integrity: Systems-based Approach CONTINUITY
BALANCE
Health and Wellbeing
PROGRESSIVE DISEASE
Pain; Change
Loss of certainty?
Loss of Role?
Why?
Illness
IMBALANCE
DISCONTINUITY
The Integrated Self.
“Dis”-integration?
“When they were building the walls How could I not have noticed? Not a sound, Imperceptibly they closed me off From the outside of the world” John O’Donohue
Loss of the Integrated Self ?
Palliative Care: Maintaining Integration; Threads of Continuity
� Physical: � Psychological: � Social: � Spiritual:
• Minimise harm/disruption (symptoms, anxieties).
• Anticipatory care (Plan, minimise risk/crisis).
• Support, strengthen existing systems (family, carer support).
• Build new systems (care, support systems).
• Encourage narrative continuity.
“I’m still me.”
Managing unpredictable change:
The Health and Care Passport
� A continuous core information system between an individual, family and his/her changing health and care community, throughout the discontinuity and unpredictability of progressive illness.
� Manages the practicalities of continuing care.
� Continuity of core integrity.