Transcript Palliative care and dementia

Palliative care and
dementia
Sarah partington
Background.
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Palliative care emphasises quality of life. It should not be a
philosophy of no hope.
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There is a lack of recognition of advanced dementia as a life
limiting, incurable disease.
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Currently no standardised pathway for end stage dementia.
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Lack of research into palliation and dementia.
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Little or no guidance on when a person is reaching end stages
of dementia.
What’s the difference in dementia?
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Prolonged and varied illness trajectory.
Traditional palliative care associated with
malignant disease.
Lack of understanding , skills, and knowledge
among health providers.
Lack of research.
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Hancock. K. et al (2006)
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WHY DOES IT MATTER?
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Advanced planning not crisis management.
Prevent inappropriate hospital admissions.
Open honest discussions with MDT and family members.
Advanced symptom management planning, appropriate to
that individual and taking into account their uniqueness.
Ensure staff have the knowledge and skills required to deliver
high quality effective care. Improved team working – MDT.
Ensure comfort, dignity and reduce distress at end of life.
Aims of the research study
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To evaluate and implement an end of life
assessment tool for people with dementia.
To develop a local tool that will identify end
stage dementia.
To educate and support staff and relatives in
dementia & advanced care planning.
To develop resources and pathways to guide
care.
Methodology
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Two methods of data collection Questionnaire & observation
Two specialist dementia care homes (110 beds
and 80 beds), 10 residents.
Formal training, resource file, ongoing
support and education.
Analysed using descriptive statistics and
actions identified.
Conclusions & recommendations
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Tool found to be useful in practice, alterations made.
Training and support probably most important element.
Common misconception that palliative either: cancer or sent
home on poor prognosis package.
Still a believe palliative care means ‘nursed in bed’.
Having experienced care co-ordinator.
Having resource file which included information to give to
family.
1 out of 10 hospitalisation, so not completely prevented and
may be appropriate.
Increased carer satisfaction and confidence.
ST
1
we have to identify the
patient’s
The surprise question
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‘ would you be surprised if this person was to
die in the next 6- 12 months?’
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Think of a person you know or have
known………..
Patients with dementia must show all of the below characteristics. (tick all that apply)
Unable to ambulate without assistance.
Unable to dress without assistance.
Unable to bathe without assistance.
Urinary and feacal incontinence, intermittent or constant.
No meaningful verbal communication: stereotypical phases only or
the ability to speak is limited to six or fewer intelligible words.
Difficulty swallowing or eating.
Patients must have had one of the following within the past 12 months. (tick all that apply)
Aspiration pneumonia.
Kidney infection or other upper urinary tract infection.
Septicemia.
Pressure ulcers, multiple, stage 3-4.
Fever, recurrent after antibiotics.
Inability to maintain sufficient fluid and calorie intake with 10%
weight loss in previous 6 mnths
NB. This tool is designed to guide care pathways and is not a diagnostic instrument.
Identify client for
assessment
‘THE SURPRISE QUESTION’
Assess using end of life tool
If palliative care indicated contact
community matron
COMPREHENSIVE ASSESSMENT.
Identification and treatment of
reversible conditions
Discussion with relatives.
Discussion with Gp
? Advanced directives in place.
Thinking ahead document
Placed on palliative pathway
Advanced planning & symptom management
Continuing care check list
OOH’s handover form
Thinking Ahead – Advanced Care Planning Discussion.
This is not a legal document, but a guide to care and can alter at any time following discussion of any changes.
The aim of any discussion about thinking ahead (sometimes called advanced care planning) is to develop a better
understanding and recording of individual priorities, needs and preferences and those of their families/ carers. This
should support planning and provision of care, and enable better planning ahead to best meet these needs. This
philosophy of ‘hoping for the best, but preparing for the worst’ enables a more proactive approach, and ensure that it
is more likely that the right thing happens at the right time. It also reduces the need for difficult and emotive decisions
to be made at a time of crisis. At any time this plan can change, this is a dynamic planning document to be adapted
and reviewed as needed.
PATIENT NAME:
ADDRESS:
DOB:
NHS NO:
DATE COMPLETED:
GP:
HOSPITAL CONTACT:
Family members involved in Advanced Planning Discussions:
Name:
Contact No:
Name of healthcare professional involved in Advanced Planning Discussions:
Role/ name:
Contact No:
Name of healthcare professional involved in Advanced Planning Discussions:
Role/ name:
Contact No:
Name of healthcare professional involved in Advanced Planning Discussions:
Role/ name:
Contact No:
Background Information.
Thinking ahead, planning for anticipated problems
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Hospitalisation.
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Subcutaneous fluids.
3. Diet and Fluids.
4. Alternatives to oral medication.
PREFERRED PLACE OF CARE:
Advanced care planning handover form completed ?
YES / NO
Signatures of those present:
………………………………………………………………………………………...
COPIES TO ALL PRESENT AND GP, ONE COPY TO BE HELD IN PATIENTS RECORDS.
End Stage Dementia Resource File
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Care pathway
End stage dementia assessment tool
Advanced care planning handover form
Contact numbers
Thinking ahead- advanced care planning discussion form
Steps to discussion making in feeding problems guide
Liverpool care pathway document
Abbey pain scale
Prescription charts
Useful research and leaflets for relatives.
FUTURE RECOMMENDATIONS/
RESEARCH
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Implementation of tool, education and support
package across B & A.
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Specialists to support care homes.
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Integration with acute trust and hospice.
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Further research into symptom control in end stage
dementia required.
Remember
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Palliative care means living well until the point of
death.
Don’t be afraid to talk about death and dying.
Continued nutrition and hydration are not always
appropriate and may not offer comfort, but prolong
suffering and death.
Antibiotics may be appropriate if they provide
symptom relief.
Stop inappropriate interventions and medications.
YOU know your clients, ensure their symptoms are
managed and use appropriate tools to help.
People can and do improve! So need to reassess on
regular basis and alter plans to meet need.
References
Hughes. J. C. (2006) Palliative care in severe dementia. MA Healthcare Ltd.
Hancock. K. et al (2006) Palliative care for people with advanced dementia. Alzheimer’s care quarterly. 7. 1. pp49-57.
Henderson. J. 2009 Beyond Barriers: learning together. Journal of Dementia Care. Vol 17 No2 Pp 30-32.
Aminoff. B. Adunsky. A. 2006 Their last 6 months: suffering and survival of end stage dementia patients. Age and Ageing. Vol 10.
Pp 1093.
The Comptroller and auditor general. 2007. Improving services for people with dementia. London. National Audit Office.
Rogers. A. 2003. Alzheimer’s disease: Unravelling the mystery. New York. US Department of Health and Human Sciences.
Schonwetter. R. Han. B. Small. B. Martin. B. Tope. K. Haley. W. Predictors of six month survival among patients with dementia:
an evaluation of hospice Medicare guidelines. American Journal of Hospice Palliative Care. 2003. 20. 105-13.
Cormack, DFS. 1991. The research process in nursing (2nd ed) Oxford. Blackwell Scientific Publication.
National Institute for Clinical Excellence (2006) Dementia: Supporting people and their carers in health and social care. National
Clinical Practice Guideline Number 42. London, NICE
Alzheimer’s Society (2007) Dementia UK. London, AS