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. Mr. Palmer:. Mr. Palmer is an 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer. - PowerPoint PPT PresentationTRANSCRIPT
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 lessRequires 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 perfectIs almost impossible to defineLooks 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 closureEffective 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 well-
being
Outcomes at the Last Place of CareJAMA, 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 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 %
Outcomes at the Last Place of Care
Supported Shared Decision MakingOutcome Home
CareHospice Nursing
FacilityHospital
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 RespectOutcome Home
CareHospice Nursing
FacilityHospital
Not always treating patient with respect
15.5 % 3.8 % 31.8 % 20.4 %
Attended to Needs of the FamilyConcern(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 CareOutcome Home
CareHospice Nursing
FacilityHospital
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 CareExcellent 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 careAvoidance of physical restraintsFor 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 preferencesSite 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 deathReconciliationProvisions for family members and children
Continuity of care across providers and care settings
Continuity of informationContinuity of treatmentContinuity 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
AdjustmentContribution 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
PainNauseaPruritisConstipationDyspneaThirstDry 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 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 patient’s physical comfort
Plan of care options
Comfort care provided by NH staffComfort 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 carePatient and family is the unit of careHospice is responsible for the
professional/financial management of care
Hospice eligibility
Not limited to specific diseasesLife expectancy of 6 months, if the
disease runs its normal coursePatient can live beyond 6 months and
receive hospice carePatient 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/communityAdvantages:
» 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 dayVolunteers to support the patient and familyBereavement support for a minimum of one
year after the death of the patientMedications, supplies, durable medical
equipment related to the terminal illnessAny 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.)
The Hospice Interdisciplinary Team
Patient & Family
Social Worker
Chaplain
Physician
Nursing Aide
VolunteerCoordinator
Nurse
PharmacistOccupational
Therapist
AncillaryServices
Dietician
BereavementCounselor
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
Hospice-NH Partnership
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 studyConflicting opinions/dataBut: 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.