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.