Transcript CONTINUITY OF CARE AT THE END-OF

CONTINUITY OF CARE
AT THE END-OF-LIFE
An oxymoron?
James Hallenbeck, MD
Assistant Professor of Medicine
Director, Palliative Care Services
Care Involves:
People
 Places
 Time
 Tools
 Knowledge/Information
 Behavior

Continuity involves
Relationships among people
 Transitions across venues of care
 Temporal synchronization
 Communication of information
 Transitions in the use of technology
 Coordination of skill sets

Forces at Work in the
Background
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Health care reimbursement system
 Different payment structures in different venues
Structure of health care system
 Organized primarily for cure, not care –
especially care of the dying
Culture
 Of Medicine – “cult of cure”
 Macro-culture – slow adaptation to new ways
of dying
N= 340 pts, 332 family members,
361 physicians, 429 others
Steinhauser, et. al. Factors Considered Important at the
End of Life by Patients, Family, Physicians, and Other
Care Providers. JAMA. END-OF-LIFE CARE.
284(19):2476-2482, November 15, 2000.
People
Family
 Friends
 Community
 Clinicians


Self…
Venues of care


Movement across venues at the end-of-life
common – usually associated with acute hospital
stay
Usually associated with dys-continuity in terms of:
 Health care providers
 Reimbursement
 Information flow
 Family involvement
Where Do We Die
25%
8%
42%
25%
ICU
Acute Care
Nursing Home
Home
Great regional variation in final
venue – generally hospital deaths
greatest in the East and lowest in the
Northwest
Time
Care needs of the dying unpredictable – can
occur day or night
 Few systems of care responsive at home
outside of hospice
 911 fast-track to acute care
 Coverage in nursing homes –off hours poor
 Transfer to hospital common prior to
death

Tools and technology


Technology often a barrier to transitions across
venues for dying
 Patients often “shackled” by technology used in
ICUs and acute care
Use of technology a means for clinicians to
display caring
 Often technology continued beyond clinical
efficacy as technology a link between clinicians
and patients
 Example: blood transfusions
Information and Communication
Poor systems for data flow across different
venues
 Communication about end-of-life issues
challenging – requires high-level skills
 In many cultures communication about
dying is indirect, non-verbal and through
the context

Skills in Caring
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Educational deficiencies abound in palliative and
end-of-life care
Where skill exists, difficulty accessing skilled
practice
 Example: lack of palliative care consults
Lay skill deficiencies:
 As most people die in institutions, most people
lack basic skills
 Need for coaching
Nothing is certain in life but
death and taxes…
Not just a statement of probability
What is needed

System level
 Improved reimbursement system
 Recognition of good care of the dying as
a core mission in health care
 Especially in “nursing homes”
 Valuation of care beyond the acute care
hospital
 Address educational deficiencies
What is needed

Personal responsibility: Like the Boy Scouts, “Be
prepared!”
 Discussion of goals and values, advance
directives
 You are most likely going to die in an
institution – plan for it!
 Money, save it – the government is not going to
be enough
 Discuss family roles in illness, who does what
 Educate yourselves
 Advocate