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.