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

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Title: 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

4
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.

5
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.

6
What now?Defining and implementing a comfort
care plan
7
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

9
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.

11
Desirable outcomesNHPCO Pathways
  • Safe and comfortable dying experience for the
    resident
  • Self-determined life closure
  • Effective grieving for family and staff

12
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

13
Outcomes II
  • Self-determined life closure
  • Information and control over treatment

14
Outcomes III
  • Effective grieving
  • Family and staff adjustment after death
  • Family psychological, spiritual, and social
    well-being

15
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
16
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
17
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
18
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
19
Improving end-of-life care in nursing homes
What does high quality care look like?
20
The patients spiritual and psychological
well-being
  • Treatment of distress
  • Depression
  • Anxiety
  • Confusion
  • Spiritual/psychological
  • Peacefulness
  • Sense of community
  • Reconciliation with friends/family

21
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)

23
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

24
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)

25
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

26
Family psychological, spiritual, and social
well-being
  • Familys acceptance of death
  • Reconciliation
  • Provisions for family members and children

27
Continuity of care across providers and care
settings
  • Continuity of information
  • Continuity of treatment
  • Continuity of health care providers

28
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

29
Family adjustment after death
  • Adjustment
  • Contribution of grief support (formal/informal)
  • Guilt/acceptance

30
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

31
The patients physical comfort
  • Pain
  • Nausea
  • Pruritis
  • Constipation
  • Dyspnea
  • Thirst
  • Dry mouth

32
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

33
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

34
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

35
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

36
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

37
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

38
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?

39
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

40
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.)

41
The Hospice Interdisciplinary Team
Volunteer Coordinator
Occupational Therapist
Pharmacist
Physician
Social Worker
Patient Family
Nurse
Dietician
Nursing Aide
Chaplain
Ancillary Services
Bereavement Counselor
42
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
43
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.

44
Supporting documentation
  • Physician terminal prognosis.
  • Advance directives.
  • Hospice consent form Resident elects to receive
    palliative care.
  • Hospice team charting on quality indicators.

45
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

46
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

47
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)

48
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.

49
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.

50
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

51
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

52
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.

53
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.
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