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

1
Opportunities to improve end of life care in the
long term care setting

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

2
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.

3
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

8
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

10
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
Provided Desired Physical Comfort and Emotional Support to Patients Provided Desired Physical Comfort and Emotional Support to Patients Provided Desired Physical Comfort and Emotional Support to Patients Provided Desired Physical Comfort and Emotional Support to Patients Provided Desired Physical Comfort and Emotional Support to Patients
Outcome Home Care Hospice Nursing Facility Hospital
Patient did not receive any or enough help with Patient did not receive any or enough help with Patient did not receive any or enough help with Patient did not receive any or enough help with Patient did not receive any or enough help with
Pain 42.6 18.3 31.8 19.3
Dyspnea 38.0 25.6 23.7 18.9
Emotional Support 70.0 34.6 56.2 51.7
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Outcomes at the Last Place of Care
Supported Shared Decision Making Supported Shared Decision Making Supported Shared Decision Making Supported Shared Decision Making Supported Shared Decision Making
Outcome Home Care Hospice Nursing Facility Hospital
Respondent wanted but did not have contact with physician 22.5 14.0 31.3 51.3
Concerns about physician communication 26.6 17.6 17.7 27.0
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Treated Patient with Respect Treated Patient with Respect Treated Patient with Respect Treated Patient with Respect Treated Patient with Respect
Outcome Home Care Hospice Nursing Facility Hospital
Not always treating patient with respect 15.5 3.8 31.8 20.4
Attended to Needs of the Family Attended to Needs of the Family Attended to Needs of the Family Attended to Needs of the Family Attended to Needs of the Family
Concern(s) about emotional support 45.4 21.1 36.4 38.4
Concern(s) about information regarding what to expect while patient was dying 31.5 29.2 44.3 50.0
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Coordinated Care Coordinated Care Coordinated Care Coordinated Care Coordinated Care Coordinated Care
Outcome Outcome Home Care Hospice Nursing Facility Hospital
Staff did not know enough about patients medical history to provide best care Staff did not know enough about patients medical history to provide best care 7.5 7.9 19.6 15.4
Overall Assessment of Quality of Care Overall Assessment of Quality of Care Overall Assessment of Quality of Care Overall Assessment of Quality of Care Overall Assessment of Quality of Care Overall Assessment of Quality of Care
Excellent 46.5 46.5 70.7 41.6 46.8
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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

22
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.