Transcript No Slide Title

Opportunities to improve end of life
care in the long term care setting
David Casarett MD MA
Division of Geriatrics
Center for Bioethics
Mr. Palmer:
 Mr. Palmer is an 84 year old man with advanced
dementia (MMSE score=10), 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.
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
Mr. Palmer: family meeting
A family meeting was held, which included Mr.
Palmer’s 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.
Mr. Palmer: family meeting
The group discussed:
» Mr. Palmer’s goals
» Mr. Palmer’s preferences as far as they could be
determined
» Mr. Palmer’s daughter’s 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.
What now?
Defining and implementing
a comfort care plan
Comfort care…
…Means doing more, not doing less
Requires a care plan:
»
»
»
»
»
Problem list
Desired outcomes
Interventions
Who is responsible
Reassessment and reevaluation
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
A “good death”
Isn’t perfect
Is almost impossible to define
Looks different for different people
Mr. Palmer:
 An 84 year old man with advanced dementia (MMSE
score=10), 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.
Desirable outcomes:
NHPCO Pathways
Safe and comfortable dying experience for
the resident
Self-determined life closure
Effective grieving for family and staff
Outcomes I
Safe and comfortable dying
» The patient’s spiritual and psychological well-being
» Continuity of care across providers and care settings
» The patient’s physical comfort
Outcomes II
Self-determined life closure
» Information and control over treatment
Outcomes III
Effective grieving
» Family and staff adjustment after death
» Family psychological, spiritual, and social wellbeing
Outcomes at the Last Place of Care
JAMA, January 7, 2004
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:
Pain
Dyspnea
Emotional
Support
42.6 %
38.0 %
18.3 %
25.6 %
31.8 %
23.7 %
19.3 %
18.9 %
70.0 %
34.6 %
56.2 %
51.7 %
Outcomes at the Last Place of Care
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 %
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
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 %
Coordinated Care
Outcome
Home
Care
Hospice
Nursing
Facility
Hospital
Staff did not
know enough
about patient’s
medical history
to provide best
care
7.5 %
7.9 %
19.6 %
15.4 %
Overall Assessment of Quality of Care
Excellent
46.5 %
70.7 %
41.6 %
46.8 %
Improving end-of-life care in nursing
homes:
What does high quality care look like?
The patient’s spiritual and
psychological well-being
Treatment of distress:
» Depression
» Anxiety
» Confusion
Spiritual/psychological
» Peacefulness
» Sense of community
» Reconciliation with friends/family
Depression, anxiety, agitation:
general principles
Resident-centered care
Avoidance of physical restraints
For agitation, neuroleptics preferred over
benzodiazepines
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)
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
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 (family’s substituted judgment)
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
Family psychological, spiritual, and
social well-being
Family’s acceptance of death
Reconciliation
Provisions for family members and children
Continuity of care across providers
and care settings
Continuity of information
Continuity of treatment
Continuity of health care providers
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
Family adjustment after death
Adjustment
Contribution of grief support (formal/informal)
Guilt/acceptance
A problem? The staff’s 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 resident’s death
•
•
•
•
•
Depressed mood
Crying
Anxiety
Insomnia
Loss of appetite
The patient’s physical comfort
Pain
Nausea
Pruritis
Constipation
Dyspnea
Thirst
Dry mouth
…
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
Goals of comfort care
» The patient’s spiritual and psychological wellbeing
» Family psychological, spiritual, and social wellbeing
» Information and control over treatment
» Continuity of care across providers and care
settings
» Family and staff adjustment after death
» The patient’s physical comfort
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
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
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/financial management of care
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
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?
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
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, xray, ambulance, etc.)
The Hospice Interdisciplinary Team
Volunteer
Coordinator
Pharmacist
Occupational
Therapist
Physician
Social
Worker
Nurse
Dietician
Chaplain
Patient
& Family
Nursing
Aide
Bereavement
Counselor
Ancillary
Services
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
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 resident’s
needs.
Supporting documentation
Physician terminal prognosis.
Advance directives.
Hospice consent form: Resident elects to
receive palliative care.
Hospice team charting on quality indicators.
Informed consent: Is hospice an
appropriate alternative?
Mr. Palmer is an 84 year old man with
advanced dementia (MMSE score=10),
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
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
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)
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.
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.
When should residents enroll in hospice?
Probably sooner…
 Short lengths of stay:
» NHPCO data: median 26 days
» 33% < 1 week
» 10% <1 day
 Better outcomes in patients with longer stays:
»
»
»
»
Pain management
Provision of services
Access to intensive continuous care
Bereavement outcomes
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
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.
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.