Transcript 6 STEPS to Success in End of Life Care for residential

6 STEPS to Success in End of
Life Care for residential homes
Workshop 5
Pam Williams
Clinical Nurse Educator in End of Life
Care
June 2011
Objectives
• Recognise the difference between an
appropriate & inappropriate admission to
hospital at end of life
• Recognise the point where the resident enters
the dying phase
• Review advance care planning when the LCP is
commenced
• Know how to care for relatives, significant
others, staff and other residents with dignity
when a resident enters the dying phase.
• Relate to the end of life care policy
A Case Study
• Jim was 79 and had dementia.
• He also had lung cancer which was not
being treated.
• Recent deterioration, weight loss, not
eating well, recent hospital admission for
infection.
• Grade 3 pressure sore on right heel which
is not healing
Case study continued
• Macmillan nurse has spoken to family but
no recent request made by home for
support. Jim was stable at last contact.
• Family wishes documented but not shared
with SPA/OOH- hence no special notes.
• Jim not responding and oxygen
saturations 77%.
• Call to SPA and 999
• Patient died in hospital 3 days later.
Significant Event analysis
• What went well?
• What did not go well?
• What could have been done better?
• What would you have done differently?
What is an appropriate hospital
admission at end of life
HOME
RISKS- Anything that
cannot be done in the
home
HOSPITAL
RISKS- unfamiliar
people, unfamiliar place,
inappropriate
interventions, too busy
BENEFITS- familiar
place, familiar caring
people, relationship with
family, personalised
care, dignity & peace
BENEFITS- medical
help at hand
Anything that cannot be
done in the home
PLANNING JIMS CARE
PATIENT NAME;
DATE;
Anticipated problems
Pain
Nausea
Vomiting
Respiratory problems
Incontinence
Bladder problems
Constipation
Unable to eat & drink
Unable to take oral medication
Skin/mouth problems
Mobility
Agitation
Confusion
Family support needed
Psychological support needed
Spiritual support needed
ADVANCE CARE PLAN
DNAR
GP
DISTRICT NURSES
OOH SERVICE
NHS NUMBER;
CARE PLAN; The patient is approaching end of life;
Actual problems - DATE
Goals
DOB ;
Actions - DATE
WHAT CAN SUPPORT DECISION
MAKING AT END OF LIFE?
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ACP- has this been revisited?
Out of Hours (OOH) handover
GP Review if appropriate
DN support
Holistic assessment
Communication with acute sector
Communicate with other appropriate
professionals- SPC team
DIAGNOSING DYING
PAM WILLIAMS
JUNE 2011
• Permits appropriate treatment
• Prevents inappropriate treatment
• “Missed diagnosis”
– leads to conflict within the clinical team
– leads to conflict with patients and relatives
• Early recognition of dying is vital
• Allows time to consider reversible causes
and appropriateness of action plan.
• Allows time to talk to all involved (patient,
professionals and family) and agree a
plan of care (ACP,DNAR)
• Prevents crises, inappropriate hospital
admissions or treatments
• Patients and relatives have opportunity to
make fully informed choices about future
• Little experience with death with reduced
number of home deaths.
• Doctors in particular have a big blind spot
over admitting “failure”
• Fear of litigation?
• Unpredictable trajectories
• Sudden death
may occur in all
types of disease
• Excluding
reversible causes
is difficult in all
forms of disease
http://www.bioethics.gov/images/living_well_g
raph.gif
Roads to death
Uncontrolled
symptoms
Normal
THE DIFFICULT
ROAD
Restless
Psychological
Distress
Confusion
Delirium
Fatigued
Drowsy
THE USUAL
ROAD
Agitation
Semicomatose
Comatose
Dead
Pattern recognition
• Common signs and symptoms
– ALL causes – many similarities
– Cancer – predominantly fatigue
– Respiratory disease
– Cardiac failure
– Dementia
• All on a background of known disease
• Profound
weakness
• Bedbound
• Increasing
drowsiness/ semicomatose
• Unable to tolerate
oral medications
• Minimal food or
fluid intake
• Disorientated
• Muscle jerks
• Gaunt physical
appearance
• Poor colour
• Poor peripheral
perfusion
• Increased sweating
LUNG CONDITIONS
• Multiple previous hospital admissions
with deteriorating condition
• Heart failure/kidney failure
• Breathless on minimal or no exertion
• On optimum medication
• No option of ventilation
• No obvious reversible cause
• Multiple previous hospital admissions
with deteriorating condition
• Deteriorating kidney function
• Swelling to ankles etc
• Breathless on minimal or no exertion
• On optimum medication
• No obvious reversible cause
ADVANCING & END STAGE
DEMENTIA
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Aims of the session;
Recognising end stage dementia
Interventions
Misconceptions
Solutions
Pam Williams Clinical Nurse Educator
End of Life Care
November 2010
Thanks to Dr Rebecca Bancroft, Consultant Geriatrician, RLUTH, for sharing her work on which
this ppt is based
DEFINITIONS
• We use the term Dementia to mean ‘memory
loss’
• An umbrella term for diseases that cause this;
• Alzheimers
• Vascular
• Lewy Body
• Picks
• CJD
DEFINITIONS
• The word dementia comes from the Latin
‘demens’
– Without a mind
• References date back to Roman texts
• French revolution - part of Napoleonic Law
– 'There is no crime when the accused is in a
state of dementia at the time of the alleged
act'
SOME FIGURES
• Dementia affects about 5% people over 65 years
– Rises to 20% aged over 80 years
– 36% live in a Care Home
• Approx 820,000 people in the UK have dementia
– Likely to increase X 2 in the next 20 years
– Current cost £17 billion
• More than cancer, stroke or heart disease
• ‘A global health and social care crisis’
WHAT IS THE MOST COMMON
FORM?
• Alzheimer Dementia is the commonest
cause of dementia (~50% cases)
– 25% Vascular dementia
– 25% Mixed pathology
• increasingly accepted (may be higher)
MORTALITY RATES
• High annual mortality rates
– 50% in NH
– 25% in RH
• Majority of patients with dementia enter 24 hour care
before they die ~76%
– Average length of stay 18 months
SURVIVAL RATES
• Mean survival is 4.5 years
• Range 3.8 - 10.7 years
• Longer survival with younger age of onset
• Women survive longer than men
ALZHEIMERS
VASCULAR DEMENTIA
PROGNOSIS
• Mortality rates for patients with dementia much
higher than for age Mean x 2.6
• We are very poor at estimating prognosis in
patients with dementia
– 1% NH residents with dementia thought to
have prognosis < 6 months
– 70% dead in 6 months
Dewey et al. Int J Geriatr Psychiatry 2001; 16: 751-761.
Mitchell et al. Arch Intern Med 2004; 164(3):321-326
Dementia increases mortality by x
approx 6
• Pneumonia is a common cause of hospitalisation
– Mortality for patient with dementia & pneumonia is 53% dead
within 6 months
• Compared with 13% for the cognitively intact
• Increases with severity of dementia
– Aspiration, weight loss
– 43% survivors develop a recurrence within 1 year
• mortality for patient with dementia & hip fracture is 55%
– Compared with 12% for the cognitively intact
ADVANCING DEMENTIA
• Clinical indicators that patients with
dementia are approaching the end stages
of their disease process (ALL of these):
– Unable to walk without assistance
– Urinary and faecal incontinence
– No consistently meaningful verbal
communication
– Unable to dress without assistance
– Barthel score <3
– Reduced ability to perform activities of living
PLUS ANY 1 OF THE
FOLLOWING;
– 10% weight loss in previous 6 months without other
cause
– Kidney or urinary tract infection (uti), recurrent fevers
– severe pressure ulcers
– reduced oral intake/weight loss,
– aspiration pneumonia
ADVANCED DEMENTIA
• Common complications include:
– Pneumonia (41%)
– Recurrent infections(53%)
– Eating problems (86%)
• All are predictors for high 6 month
mortality (~50%)
COMMON INTERVENTIONS
INCLUDE;
– Hospital admission / attendance
• 70% due to pneumonia
– Tube feeding
– IV therapy
HOSPITAL ADMISSION
• Transfer from NH to hospital results in decline of
psycho-physiological functioning including:
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Mobility and transfers
Toileting
Feeding
Grooming
• None of these functions improve significantly
back to baseline at discharge
AND…..
• Evidence that hospitalisation is not necessary
for treatment of pneumonia in NH residents
– Immediate survival and mortality rates similar for
treatment provided in NH or hospital
– Long-term outcomes better in residents treated in
the NH
• 6 week mortality
– 39.5 % in hospitalized
– 18.7% in non-hospitalized residents
– no significant differences between the 2 groups before
diagnosis
ANTIBIOTICS
• Effective in single episodes of infection in
NH residents with dementia
– Limited by recurrence of infections in
advanced dementia
• Antibiotic therapy does not prolong
survival in residents with severe dementia
– unable to communicate and unable to walk alone
/ with assistance etc
DYSPHAGIA
• Numerous causes – some reversible
• Needs thorough assessment
– Was the onset acute or gradual?
• ALL patients require SALT and dietetic
assessment
SUDDEN ONSET - CAUSES
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Current illness i.e. UTI
Acute event i.e. stroke
Sore mouth/ill fitting teeth
Infection i.e. oral thrush
Medication i.e. causing nausea, sedation
Pain
GRADUAL ONSET - CAUSES
– Previous stroke
– Additional neurological disorder
– Depression
– Mouth/throat cancers etc
– Progression of dementia
SWALLOWING PROBLEMS
• AKA DYSPHAGIA
• Swallowing problems are very common in
patents with dementia
– marker of advanced dementia and disease
progression
• Hospital admission due to dysphagia in patients
with advanced dementia is not appropriate
• Tube feeding in patients with advanced
dementia is not beneficial
Artificial Nutrition and Hydration
• No research on the effectiveness of tube feeding
• However, we do know that tube feeding in
dementia does not
– Prevent aspiration pneumonia
• may increase its incidence
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Prevent the consequences of malnutrition
Increase survival
Prevent or improve pressure ulcers
Reduce the risk of infection
Improve functional status
Improve comfort of the patient
PEG FEEDING
– Average survival 59 days in patients who had
PEG (n=23)
– 60 days in patients who did not undergo PEG
placement (n= 18)
NUTRITION
• Maintaining nutritional health in advanced
dementia may not be possible
• However, important to try to maintain or
slow deterioration to preserve quality of life
• Lower BMI associated with an increased
incidence and severity of behavioural
problems
MANAGEMENT
• Food first’ approach
– Begins early in the disease
– Based on previous / current preferences
– Constant availability
– Note frequent waking at night
– May need 6 small meals / day
– Full fat, full sugar
– Food fortification
– Supplements
MANAGEMENT CONT…
• Careful hand feeding
– Method of choice, even if ‘unsafe swallow’
– Maintains human contact and social
interaction
– Provides stimulation and comfort
– Provides/ maintains quality of life
– Time consuming
– Dependent on relationship between feeder
and patient
OTHER HELPFUL TIPS
– Use modified consistency food and fluid
– Highly flavoured
– Ice cold or hot
– Cold drink before food
– Alternate sweet and savoury
– Verbal prompts important
– Minimise distraction
– Separate flavours and textures
Medication
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High risk group for chronic renal failure
Usually undiagnosed
Medication should be lower doses
Inappropriate/unnecessary meds should be
discontinued and regularly reviewed
• Change to more suitable format
• Prepare for swallow to diminish and plan
alternatives i.e. pain relief, epilepsy etc
THE CASE FOR FLUIDS….
– More comfortable if hydrated?
– Dehydration can cause delirium, and muscle jerks
– May relieve thirst?
– More likely to be opioid toxic if dehydrated
– Rarely prolongs the dying process!
THE CASE AGAINST….
– Comatose patients do not experience pain,
thirst etc
– May exacerbate oedema / secretions
– Often does not relieve thirst or dry mouth
– May prolong the dying process!
The decision
• Be guided by your patient
• Are they awake and expressing
thirst/discomfort and they have an
obviously dry mouth etc
• Have the been on the LCP for some time
and are not deteriorating further although
they still fit the criteria?
• Are you treating the needs of the patient or
their family?
END OF LIFE
A blanket Nil by mouth policy is not appropriate
• Distressing for relatives and carers
• No evidence of harm for offering small amounts of
food and fluid
– Positioning
– Alertness
– Be guided by your patient!
SO WHAT CAN WE DO?
• Be more efficient at identifying advancing & end
stage dementia
• Improve your knowledge of end stage dementia
• Prepare families for what is going to happen at
each stage.
• Give them written information
• Change your focus from cure to comfort
• Keep everyone informed- this is more likely to
prevent an inappropriate acute admission and
misunderstandings
And remember…..
• Dementia is going to double in the next 20
years.
• We need to get it right now because by
then we will be the patients!
Any questions?
Some useful references
• Finucane TE et al. Tube feeding in patients with advanced dementia: A review of the
evidence. JAMA 1999; 282(14):1365-1370.
• Gillick MR. Sounding board - Rethinking the role of tube feeding in patients with
advanced dementia. N Engl J Med 2000; 342(3):206-210.
• Murphy et al. Percutaneous endoscopic gastrostomy does not prolong survival in
patients with dementia. Arch Intern Med 2003; 163(11):1351-1353
•
Fried et al. J Gen Int Med 1995; 10(5):246-250. Immediate survival and mortality
rates similar for treatment provided in NH or hospital
•
Thompson et al. J Am Board Fam Pract 1997; 10(2):82-87 Long-term outcomes
better in residents treated in the NH
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Van der Steen et al. J Am Geriatr Soc 2002; 50(3):439-448 Antibiotic therapy does
not prolong survival in residents with severe dementia
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Untreated symptoms i.e. pain, nausea
Medication
Infection
Blood abnormalities
Benefits and risks of treatment should be
considered
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Communication
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The patient
The relatives
GP/DN
Out of Hours
Hospice outreach
Symptom control (anticipatory
prescribing)
Withdrawal of futile and inappropriate
treatments and investigations
Liverpool Care Pathway for the Dying
Managing dying
Nurses often see lack of time as the greatest
barrier to caring for dying people. In fact,
good care need not be time-consuming.
It is more about knowing where to seek
guidance and being prepared to make an
emotional commitment.
A walk through ‘The Dying Process’
Support sheet;
Medication
Food & drink
Mouth care
Breathing
Consciousness
Pressure areas
Circulation
End of life care checklist
What is important to families?
• My family members pain was eased to the
greatest extent possible and the staff
provided comfort
• The staff treated my family member with
dignity
• The staff were sensitive to the needs of
my family member
• The staff informed me when they thought
that death was at hand
And place of death is important…
Families are more satisfied with the end of life care
provided in a long term care facility than in an
acute hospital
Taken from the Family Perceptions of Care
Scale
Vohra & Brazil (2004) Journal of Palliative
Care
Staff & other residents
• What is in place to support others when
someone is dying?
• What else could you do?
Supporting Staff
• Extra physical work?
• Emotional stress
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Removing the taboo- the traffic lights
Its ok to show feelings
Supervision- could you use reflection?
Peer support
Supporting other residents
• How do you tell the other residents when
someone is dying?
• Are there any particular residents who
may be more affected than others?
• Should this be discussed?
A question…
• Are staff confident to act as the
residents advocate if admission to
hospital would be inappropriate in the
dying phase?
• Lets look at Mollys story.
Culture & Ethnicity
in End-of-Life
Communication
Learning objectives
• Give examples of the influence of culture
on end-of-life communication
• Explain the interaction between trust and
cross-cultural communication
• Describe how you can incorporate
awareness of cultural issues into your
work with patients and families
Consider a case
• 68 year old stroke patient from Somalia
with pneumonia :
– Team concerned about the value of hospital
care
– Wife feels strongly that life-sustaining care
be continued
Consider a case
• The patient aspirates and then develops
ARDS and septic shock:
– Team feels hospital and ICU care is futile
– Wife is adamant that life-sustaining therapy
be continued and seems suspicious of team’s
motives
What Is Culture? What Is
Ethnicity?
• Culture: Totality of socially transmitted
behavior patterns, arts, beliefs, institutions,
and all other products of human work and
thought
•
- American Heritage Dictionary, 2000
• Ethnicity: Large groups of people classed
according to common racial, national,
tribal, religious, linguistic, or cultural
background
-
- Merriam-Webster Dictionary, 2002
Ethnicity & pain management
• Pain is under treated in some ethnic
minorities
• Why?
Morrison, New Engl J Med, 2000; 324:1023
Cleeland, Ann Intern Med, 1997; 127:813
Todd, JAMA, 1993; 269:1537
Cultural differences in attitudes
about end-of-life care
• Many studies show some ethnic groups are
– Less likely to discuss EOL care with clinicians
– Report lower quality of communication
– More likely to feel discussing death may bring
death closer
Curtis, Arch Int Med, 2000; 160:1690
Can discussing death cause
harm?
• Studies have shown that people from
many different cultures are more likely to
believe discussing death can bring death
closer:
– African Americans
– Some Native Americans
– Immigrants from China, Korea, Mexico
Curtis, Arch Intern Med, 2000;
60:1690
Caralis, J Clin Ethics, 1992; 4:155
Why do different ethnic groups
receive different levels of pain
relief?
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Take 5 minutes to think about this!
Language- proxys, misunderstandings
Assessment- communication
Culture- ‘good patient’, vocal or stoical
Religion- punishment to be borne
Experience- normalisation, access to services
Stereotyping
Recommendations for bridging
cultural differences in clinical practice
• Assessment of patient and families
understanding and beliefs
• Preparation:
– Building trust with patient and family
– Explicit discussion of misunderstanding
– Involve community/religious leaders
• Communicate in a caring manner
• Follow through
Carrese, J Gen Intern Med, 2000; 15:92
Potential solutions
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Exploring cultural beliefs
Building trust
Addressing communication barriers
Addressing religion and spirituality
Involving the family
Kagawa-Singer, JAMA, 2001; 286:2993
Potential solutions:
Exploring cultural beliefs
• What do you think might be going on?
• If we needed to discuss a serious
medical issue, how would you and your
family want to handle it?
• Would you want to handle the
information and decision-making, or
should that be done by someone else in
the family?
Kagawa-Singer, JAMA, 2001; 286:2993
Potential solutions:
Building trust
• Address directly: “Some people find it hard
to trust clinicians who are not from their
culture. Have you felt that?”
• Make explicit that you will work with patient
and family
• Understand and accommodate differences
in treatment preferences
Kagawa-Singer, JAMA, 2001; 286:2993
Potential solutions:
Communication barriers
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Obtain trained medical interpreter:
Avoid medical or complex jargon
Avoid use of family as interpreters
Check understanding:
– “What is your understanding of your illness and
what is happening to you?”
Kagawa-Singer, JAMA, 2001; 286:2993
Potential solutions:
Religion & spirituality
• Address directly:
– “Spiritual or religious strength sustains many
people in times of distress. What is important
for us to know about your faith or spiritual
needs?”
– “How can we support your needs and
practices?”
Kagawa-Singer, JAMA, 2001; 286:2993
Potential solutions:
Family involvement
• Ascertain key members of the family:
– Inclusive definition of “family”
• Ensure all family are included as desired
by patient
• Assess patient’s desires for who make
treatment decisions:
– Patient alone, patient and family, or family
alone
Kagawa-Singer, JAMA, 2001; 286:2993
Organisational possibilities
Develop a cultural support team –members
of the cultures of patients being served
• Review policies that may interfere with
cultural expression:
– Visiting hours
– Burning candles
– Caring for the body after death
• Integrate interpreter services into care
delivery
Seibert, J Med Ethics, 2002; 28-143
Focus on building trust
• Some cultures view care homes as family
being unable to care for patient:
– Emphasize care home as an adjunct to family,
but not a replacement
• Perception of palliative care as no care or
withholding care:
-reassurance of change of focus not
withdrawal
Kagawa-Singer, JAMA, 2001; 286:2993
Reconsider the case
• 68 year old stroke patient from Somalia
with pneumonia
• The patient aspirates, develops ARDS and
septic shock:
– Team feels hospital and ICU care is futile
– Wife is adamant that supportive care be
continued and seems suspicious of team’s
motives
Building trust across cultures
• Focus on building trust:
– Wife is expert on husband’s wishes
– Team will not withhold any indicated care
• Understand & accommodate differences:
– Listen to her perspective
– Allow adequate time
– Effective cross-cultural communication may take longer
• Involve others:
– Additional family members
– Community or religious leader
Summary
• Patients’ views of end-of-life care may be
powerfully affected by culture and ethnicity
• Differences between groups can be a
helpful guide, NOT a protocol for care
• Cultural sensitivity requires effort to ask
the right questions and listen
Objectives
• Recognise the difference between an
appropriate & inappropriate admission to
hospital at end of life
• Recognise the point where the resident enters
the dying phase
• Review advance care planning when the LCP is
commenced
• Know how to care for relatives, significant
others, staff and other residents with dignity
when a resident enters the dying phase.
• Relate to the end of life care policy
The policy
• There is a system in place to support families,
significant others, staff and other residents when
a resident is dying.
• There is a system in place to reduce
inappropriate admissions to hospital at end of
life.
• There is a system in place to identify and
support the religious and spiritual needs of our
residents in the dying phase
• The Liverpool Care Pathway is used to guide
and support the care delivered in the dying
phase.
the 6 steps - targets
• All staff are aware of 6 Steps and what we are
aiming to achieve
• The supportive care register is in place
• We offer all our residents on the register
advance care plans
• We have robust processes in place to reduce
inappropriate hospital admissions & all staff
follow them
• We update OOH with relevant information for all
patients on register
• We use the lcp for all our expected deaths
Where are you now?
• Achieved
• Begun but not completed
• Planned but not begun
• Not yet planned
To do list
• Feedback to all staff contents of Step 5 workshop
• Implement any changes required as identified in
the workshop to support relatives and significant
others
• Photocopy 999 poster and display in an
appropriate area/s for staff to consider before
dialling for the emergency ambulance service
• Include a significant event analysis at each team
meeting
• Display a copy of the cultural and religious needs
at the end of life poster in an appropriate area/s
Post death audit forms
Continue to complete Post Death
Information Audit Form and bring all
completed forms to Step 6 workshop to
be analyzed.
Any questions?