Opportunities to improve end of life care in the long term care setting

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Opportunities to improve end of life care in the
long term care setting

• David Casarett MD MA
• Division of Geriatrics
• Center for Bioethics

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Mr. Palmer

• Mr. Palmer is an 84 year old man with advanced
  dementia (MMSE score10), congestive heart
  failure, diabetes, and prostate cancer.
• He currently lives in a skilled care facility,
  where he is dependent on others for most
  activities of daily living.
• He has had 2 hospitalizations in the past 6
  months one for a heart failure exacerbation and
  one for presumed aspiration pneumonia.
• He has lost 10 lbs. in the past 6 months and is
  only eating 50 of meals, despite an intensive
  feeding program.

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What should the goals for care be?

• Cure of disease
• Avoidance of premature death
• Maintenance or improvement in function
• Prolongation of life

• Relief of suffering
• Quality of life
• Staying in control
• A good death
• Support for families and loved ones

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Mr. Palmer family meeting

• A family meeting was held, which included Mr.
  Palmers daughter, the interdisciplinary team and
  the attending physician. The meeting was held in
  a room that could accommodate Mr. Palmer as well,
  so he could be present.

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Mr. Palmer family meeting

• The group discussed
• Mr. Palmers goals
• Mr. Palmers preferences as far as they could be
  determined
• Mr. Palmers daughters wishes based on what she
  knew of her father and his goals
• The risks and potential benefits of a feeding
  tube
• They decide the primary goal should be to focus
  on palliative (comfort) care.

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What now?Defining and implementing a comfort
care plan
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Comfort care

• Means doing more, not doing less
• Requires a care plan
• Problem list
• Desired outcomes
• Interventions
• Who is responsible
• Reassessment and reevaluation

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Outline

• Standards of end of life care
• 6 domains
• How well are we doing?
• What we should be doing
• Translating standards into practice the role for
  hospice

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A good death

• Isnt perfect
• Is almost impossible to define
• Looks different for different people

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Mr. Palmer

• An 84 year old man with advanced dementia (MMSE
  score10), congestive heart failure, diabetes,
  and prostate cancer.
• Dependent on others for most activities of daily
  living.
• 2 hospitalizations in the past 6 months one for
  a heart failure exacerbation and one for presumed
  aspiration pneumonia.
• 10 lb. weight loss in the past 6 months and
  eating 50 of meals, despite an intensive feeding
  program.

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Desirable outcomesNHPCO Pathways

• Safe and comfortable dying experience for the
  resident
• Self-determined life closure
• Effective grieving for family and staff

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Outcomes I

• Safe and comfortable dying
• The patients spiritual and psychological
  well-being
• Continuity of care across providers and care
  settings
• The patients physical comfort

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Outcomes II

• Self-determined life closure
• Information and control over treatment

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Outcomes III

• Effective grieving
• Family and staff adjustment after death
• Family psychological, spiritual, and social
  well-being

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Outcomes at the Last Place of Care JAMA, January
7, 2004
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Outcomes at the Last Place of Care
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Improving end-of-life care in nursing homes
What does high quality care look like?
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The patients spiritual and psychological
well-being

• Treatment of distress
• Depression
• Anxiety
• Confusion
• Spiritual/psychological
• Peacefulness
• Sense of community
• Reconciliation with friends/family

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Depression, anxiety, agitation general principles

• Resident-centered care
• Avoidance of physical restraints
• For agitation, neuroleptics preferred over
  benzodiazepines

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Spiritual/psychological support

• For NH population in which dementia is common,
  support is often more important for
• Family
• Staff
• Interdisciplinary support
• Counseling (social work)
• Chaplain
• Clinical information, teaching (Nursing)

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Information and control over treatment

• Culturally appropriate understanding of treatment
  options
• Culturally appropriate understanding of prognosis
  and illness trajectory
• Treatment consistent with preferences
• Site of death consistent with patients and
  families goals

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Information/control General principles

• Frequent (re)assessment of resident/family
• Goals for care
• Preferences for treatment
• Treatment plan should accurately reflect resident
  preferences
• Directly (if known)
• Indirectly (familys substituted judgment)

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Plan of comfort care may result in

• Weight loss (without placement of a feeding tube)
• Fevers that are not evaluated (but which can be
  treated symptomatically with acetaminophen)
• Pressure ulcers that are not debrided or treated
  with uncomfortable dressing changes

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Family psychological, spiritual, and social
well-being

• Familys acceptance of death
• Reconciliation
• Provisions for family members and children

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Continuity of care across providers and care
settings

• Continuity of information
• Continuity of treatment
• Continuity of health care providers

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Continuity General principles

• Seamless transitions from NH to hospital and back
• General orders (comfort care)
• Specific treatment orders
• Advance directives, orders honored across
  settings (POLST)
• Changes clearly justified and documented

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Family adjustment after death

• Adjustment
• Contribution of grief support (formal/informal)
• Guilt/acceptance

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A problem? The staffs perspective

• Staff develop close, long-term relationships with
  residents
• One survey of long term care staff
• Almost all had experienced the death of a
  resident in the past 6 months
• 72 had at least one symptom they attributed to
  the residents death
• Depressed mood
• Crying
• Anxiety
• Insomnia
• Loss of appetite

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The patients physical comfort

• Pain
• Nausea
• Pruritis
• Constipation
• Dyspnea
• Thirst
• Dry mouth

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Physical comfort general principles

• Primary goals are
• Comfort that is acceptable
• Alertness that is acceptable
• No general rules about
• Maximum opioid dose
• Off limits medications
• Balance of sedation and comfort must be
  individualized

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Goals of comfort care

• The patients spiritual and psychological
  well-being
• Family psychological, spiritual, and social
  well-being
• Information and control over treatment
• Continuity of care across providers and care
  settings
• Family and staff adjustment after death
• The patients physical comfort

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Plan of care options

• Comfort care provided by NH staff
• Comfort care provided by hospice
• Hospice care provided by certified NH hospice
  provider
• Hospice care provided by community hospice

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Comfort care provided by NH

• Advantages
• Simple
• Easy to implement
• Facilitates quick changes to care plan
• Disadvantages
• NHs vary widely in training, policies, and staff
  support
• Requires staff to shift to a very different skill
  set, and set of treatment goals

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Hospice Concept

• Patient has a terminal illness
• Patient care outcomes are focused on providing
  comfort rather than cure
• Home is the primary setting of choice for
  delivery of care
• Patient and family is the unit of care
• Hospice is responsible for the professional/financ
  ial management of care

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Hospice eligibility

• Not limited to specific diseases
• Life expectancy of 6 months, if the disease runs
  its normal course
• Patient can live beyond 6 months and receive
  hospice care
• Patient not required to have a DNR order

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Identifying Appropriate Residents

• An irreversible decline or a decline unresponsive
  to treatment?
• Responsible decision-maker indicated a desire for
  comfort, rather than curative care?
• Diagnosis of a terminal or life-limiting illness?
• Would you be surprised if the resident died
  within the next 6 months?

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Hospice Internal or external?

• In house
• Advantages
• Easier referrals
• Avoids many financial barriers of hospice
  referral
• Disadvantages
• Puts burden of training on hospice

• Contracted/community
• Advantages
• Skills, training already exist
• Flexibility to choose contracting hospice
• Disadvantages
• Barriers of payment
• Possibility of discontinuity of care with shared
  care

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Hospice Services Internal/external

• On-call availability 24 hours a day
• Volunteers to support the patient and family
• Bereavement support for a minimum of one year
  after the death of the patient
• Medications, supplies, durable medical equipment
  related to the terminal illness
• Any other service or supply specified in the plan
  of care, if the items or service are covered
  under the Medicare program (lab, x-ray,
  ambulance, etc.)

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The Hospice Interdisciplinary Team
Volunteer Coordinator
Occupational Therapist
Pharmacist
Physician
Social Worker
Patient Family
Nurse
Dietician
Nursing Aide
Chaplain
Ancillary Services
Bereavement Counselor
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Hospice-NH Partnership
?
Expertise of the nursing facility in long-term
care
Expertise of hospice in end-of-life care
?
Optimal experience for dying residents and their
family members
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Coordinated plan of care

• Reflect hospice philosophy.
• Common problem list.
• Designate responsible provider.
• Designate responsible discipline.
• Establish when it will be done.
• Palliative care goals.
• Change and update to meet the residents needs.

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Supporting documentation

• Physician terminal prognosis.
• Advance directives.
• Hospice consent form Resident elects to receive
  palliative care.
• Hospice team charting on quality indicators.

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Informed consent Is hospice an appropriate
alternative?

• Mr. Palmer is an 84 year old man with advanced
  dementia (MMSE score10), congestive heart
  failure, diabetes, and prostate cancer.
• He says his goals for care are
• To stay as comfortable as possible
• To avoid being a burden to family
• To stay at the nursing home and avoid
  hospitalization

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Hospice effectiveness in nursing homes

• Moderate quality data (case-control studies)
• Main findings
• Improved pain assessment and management
• Improved family satisfaction
• Lower rates of restraint use
• (Sources Miller 2002 Teno
  2004 Miller 2003)
• Longer lengths of stay associated with better
  outcomes

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Need for hospice in nursing homes?

• Yes
• Compared to community-dwelling hospice patients,
  similar needs for
• Pain management
• Symptom management
• Education/teaching
• Counseling
• Unique needs
• Supervision of patient
• Communication/contact
• Casarett (2001)

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Assistant Secretary for Planning and Evaluation
(ASPE), 2000

• Hospice residents are less likely to be
  hospitalized in the last 30 days of life (12.5
  vs 41.3) and last 90 days (24.5 vs 53).
• Hospice patients received superior pain
  assessments compared to those who did not receive
  hospice.

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Results of ASPE Study (cont.)

• Hospice patients had lower rates of physical
  restraint use, parenteral/intravenous feeding, or
  feeding tubes in place.
• When hospice is working in a nursing facility,
  there is a beneficial spillover effect to
  non-hospice residents.

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When should residents enroll in hospice?

• Probably sooner
• Short lengths of stay
• NHPCO data median 26 days
• 33 lt 1 week
• 10 lt1 day
• Better outcomes in patients with longer stays
• Pain management
• Provision of services
• Access to intensive continuous care
• Bereavement outcomes

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What is an optimal length of stay in hospice?

• No definitive study
• Conflicting opinions/data
• But Residents and families need enough time in
  hospice
• To develop relationships with providers
• To allow for full assessment of needs
• To develop a treatment plan
• Minimum 2-3 months

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Mr. Palmer

• Mr. Palmer enrolled in hospice approximately 2
  weeks following the family meeting.
• He remained stable, with gradual continued weight
  loss, for 3 months.
• He had one episode of dehydration and probable
  aspiration pneumonia that was treated in the
  nursing home, without the need for
  hospitalization.

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Mr. Palmer

• After that illness, he remained weak and
  lethargic, with a more rapid decline in ADLs.
• He died one month later (4 months after enrolling
  in hospice).
• Hospice continued to provide bereavement support
  for family and staff.