CONTINUITY OF CAREAT THE END-OF-LIFE

An oxymoron?

James Hallenbeck, MDJames Hallenbeck, MD

Assistant Professor of MedicineAssistant Professor of Medicine

Director, Palliative Care ServicesDirector, Palliative Care Services

Care Involves:

PeoplePeople PlacesPlaces TimeTime ToolsTools Knowledge/InformationKnowledge/Information BehaviorBehavior

Continuity involves

Relationships among peopleRelationships among people Transitions across venues of careTransitions across venues of care Temporal synchronization Temporal synchronization Communication of informationCommunication of information Transitions in the use of technologyTransitions in the use of technology Coordination of skill setsCoordination of skill sets

Forces at Work in the Background Health care reimbursement systemHealth care reimbursement system

Different payment structures in different venuesDifferent payment structures in different venues Structure of health care systemStructure of health care system

Organized primarily for Organized primarily for curecure, not , not carecare – – especially care of the dyingespecially care of the dying

CultureCulture Of Medicine – “cult of cure”Of Medicine – “cult of cure” Macro-culture – slow adaptation to new ways Macro-culture – slow adaptation to new ways

of dyingof 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

FamilyFamily FriendsFriends CommunityCommunity CliniciansClinicians

Self…Self…

Venues of care

Movement across venues at the end-of-life common Movement across venues at the end-of-life common – usually associated with acute hospital stay– usually associated with acute hospital stay

Usually associated with dys-continuity in terms of:Usually associated with dys-continuity in terms of: Health care providersHealth care providers ReimbursementReimbursement Information flowInformation flow Family involvementFamily involvement

Where Do We Die

8%

42%25%

25%ICUAcute CareNursing HomeHome

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 Care needs of the dying unpredictable – can occur day or nightoccur day or night

Few systems of care responsive at home Few systems of care responsive at home outside of hospiceoutside of hospice

911 fast-track to acute care911 fast-track to acute care Coverage in nursing homes –off hours poorCoverage in nursing homes –off hours poor

Transfer to hospital common prior to Transfer to hospital common prior to death death

Tools and technology

Technology often a barrier to transitions across Technology often a barrier to transitions across venues for dyingvenues for dying Patients often “shackled” by technology used in Patients often “shackled” by technology used in

ICUs and acute careICUs and acute care Use of technology a means for clinicians to Use of technology a means for clinicians to

display caringdisplay caring Often technology continued beyond clinical Often technology continued beyond clinical

efficacy as technology a link between clinicians efficacy as technology a link between clinicians and patientsand patients

Example: blood transfusionsExample: blood transfusions

Information and Communication

Poor systems for data flow across different Poor systems for data flow across different venuesvenues

Communication about end-of-life issues Communication about end-of-life issues challenging – requires high-level skillschallenging – requires high-level skills

In many cultures communication about In many cultures communication about dying is indirect, non-verbal and through dying is indirect, non-verbal and through the contextthe context

Skills in Caring

Educational deficiencies abound in palliative and Educational deficiencies abound in palliative and end-of-life careend-of-life care

Where skill exists, difficulty accessing skilled Where skill exists, difficulty accessing skilled practicepractice Example: lack of palliative care consultsExample: lack of palliative care consults

Lay skill deficiencies:Lay skill deficiencies: As most people die in institutions, most people As most people die in institutions, most people

lack basic skillslack basic skills Need for coachingNeed for coaching

Nothing is certain in life but death and taxes…

Not just a statement of probability

What is needed

System levelSystem level Improved reimbursement systemImproved reimbursement system Recognition of good care of the dying as Recognition of good care of the dying as

a core mission in health carea core mission in health careEspecially in “nursing homes”Especially in “nursing homes”

Valuation of care beyond the acute care Valuation of care beyond the acute care hospitalhospital

Address educational deficienciesAddress educational deficiencies

What is needed Personal responsibility: Like the Boy Scouts, “Be Personal responsibility: Like the Boy Scouts, “Be

prepared!”prepared!” Discussion of goals and values, advance directivesDiscussion of goals and values, advance directives You are most likely going to die in an institution – You are most likely going to die in an institution –

plan for it!plan for it! Money, save it – the government is not going to be Money, save it – the government is not going to be

enoughenough Discuss family roles in illness, who does whatDiscuss family roles in illness, who does what Educate yourselvesEducate yourselves AdvocateAdvocate