6 STEPS to Success in End of Life Care for residential homes Workshop 5

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6 STEPS to Success in End of Life Care for
residential homesWorkshop 5

• Pam Williams
• Clinical Nurse Educator in End of Life Care
• June 2011

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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

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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

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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.

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Significant Event analysis

• What went well?
• What did not go well?
• What could have been done better?
• What would you have done differently?

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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
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PLANNING JIMS CARE
PATIENT NAME
NHS NUMBER

DOB DATE
CARE PLAN
The patient is approaching end of life
Anticipated problems Actual problems - DATE Goals Actions - DATE
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
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WHAT CAN SUPPORT DECISION MAKING AT END OF LIFE?

• 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

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(No Transcript)
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• DIAGNOSING DYING
• PAM WILLIAMS
• JUNE 2011

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Why is it important?

• Permits appropriate treatment
• Prevents inappropriate treatment
• Missed diagnosis
• leads to conflict within the clinical team
• leads to conflict with patients and relatives

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End of Life Care Model
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Last Days of Life

• 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

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Diagnosing dying is difficult to do.

• 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

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Dying 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_graph.
gif
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Roads to death
THE DIFFICULT ROAD
Uncontrolled symptoms
Restless
Psychological Distress
Confusion
Normal
Delirium
Fatigued
Agitation
Drowsy
THE USUAL ROAD
Semicomatose
Comatose
Dead
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How do we Diagnose Dying?

• 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

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Diagnosing Dying

• Profound weakness
• Bedbound
• Increasing drowsiness/ semi-comatose
• Unable to tolerate oral medications
• Minimal food or fluid intake

• Disorientated
• Muscle jerks
• Gaunt physical appearance
• Poor colour
• Poor peripheral perfusion
• Increased sweating

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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

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Heart Failure

• 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

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ADVANCING END STAGE DEMENTIA

• 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

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DEFINITIONS

• We use the term Dementia to mean memory loss
• An umbrella term for diseases that cause this
• Alzheimers
• Vascular
• Lewy Body
• Picks
• CJD

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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'

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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

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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)

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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

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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

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ALZHEIMERS
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VASCULAR DEMENTIA
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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 lt 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

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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

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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 lt3
• Reduced ability to perform activities of living

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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

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ADVANCED DEMENTIA

• Common complications include
• Pneumonia (41)
• Recurrent infections(53)
• Eating problems (86)
• All are predictors for high 6 month mortality
  (50)

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COMMON INTERVENTIONS INCLUDE

• Hospital admission / attendance
• 70 due to pneumonia
• Tube feeding
• IV therapy

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HOSPITAL ADMISSION

• Transfer from NH to hospital results in decline
  of psycho-physiological functioning including
• Mobility and transfers
• Toileting
• Feeding
• Grooming
• None of these functions improve significantly
  back to baseline at discharge

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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

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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

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DYSPHAGIA

• Numerous causes some reversible
• Needs thorough assessment
• Was the onset acute or gradual?
• ALL patients require SALT and dietetic assessment

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SUDDEN ONSET - CAUSES

• 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

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GRADUAL ONSET - CAUSES

• Previous stroke
• Additional neurological disorder
• Depression
• Mouth/throat cancers etc
• Progression of dementia

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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

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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
• 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

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PEG FEEDING

• Average survival 59 days in patients who had PEG
  (n23)
• 60 days in patients who did not undergo PEG
  placement (n 18)

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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

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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

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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

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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

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Medication

• 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

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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!

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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!

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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?

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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!

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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

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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!

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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
• 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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Reversible Causes

• Untreated symptoms i.e. pain, nausea
• Medication
• Infection
• Blood abnormalities
• Benefits and risks of treatment should be
  considered

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Actively Managing the Terminal Phase

• Communication
• 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

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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.

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• A walk through The Dying Process
• Support sheet
• Medication
• Food drink
• Mouth care
• Breathing
• Consciousness
• Pressure areas
• Circulation

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ANY QUESTIONS?
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End of life care checklist
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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

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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

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Staff other residents

• What is in place to support others when someone
  is dying?
• What else could you do?

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Supporting Staff

• Extra physical work?
• Emotional stress
• Removing the taboo- the traffic lights
• Its ok to show feelings
• Supervision- could you use reflection?
• Peer support

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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?

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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.

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Culture Ethnicity in End-of-Life Communication
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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

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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

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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 teams motives

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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

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Ethnicity pain management

• Pain is under treated in some ethnic minorities
• Why?

Morrison, New Engl J Med, 2000 3241023
Cleeland, Ann Intern Med, 1997 127813
Todd, JAMA, 1993 2691537
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Cultural differences in attitudesabout
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 1601690
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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 601690 Caralis, J
Clin Ethics, 1992 4155
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Why do different ethnic groups receive different
levels of pain relief?

• 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

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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 1592
79
Potential solutions

• Exploring cultural beliefs
• Building trust
• Addressing communication barriers
• Addressing religion and spirituality
• Involving the family

Kagawa-Singer, JAMA, 2001 2862993
80
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 2862993
81
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 2862993
82
Potential solutions Communication barriers

• 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 2862993
83
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 2862993
84
Potential solutions Family involvement

• Ascertain key members of the family
• Inclusive definition of family
• Ensure all family are included as desired by
  patient
• Assess patients desires for who make treatment
  decisions
• Patient alone, patient and family, or family alone

Kagawa-Singer, JAMA, 2001 2862993
85
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
86
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 2862993
87
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 teams motives

88
Building trust across cultures

• Focus on building trust
• Wife is expert on husbands 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

89
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

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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

91
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.

92
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

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Where are you now?

• Achieved
• Begun but not completed
• Planned but not begun
• Not yet planned

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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

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Post death audit forms

• Continue to complete Post Death Information
  Audit Form and bring all completed forms to Step
  6 workshop to be analyzed.

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Any questions?