CONTINUITY OF CARE AT THE END-OF-LIFE An oxymoron? James Hallenbeck, MD Assistant Professor of Medicine Director, Palliative Care Services

Care Involves: People People Places Places Time Time Tools Tools Knowledge/Information Knowledge/Information Behavior Behavior

Continuity involves Relationships among people Relationships among people Transitions across venues of care Transitions across venues of care Temporal synchronization Temporal synchronization Communication of information Communication of information Transitions in the use of technology Transitions in the use of technology Coordination of skill sets Coordination of skill sets

Forces at Work in the Background Health care reimbursement system Health care reimbursement system  Different payment structures in different venues Structure of health care system Structure of health care system  Organized primarily for cure, not care – especially care of the dying Culture 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): , November 15, 2000.

People Family Family Friends Friends Community Community Clinicians Clinicians Self… Self…

Venues of care Movement across venues at the end-of-life common – usually associated with acute hospital stay Movement across venues at the end-of-life common – usually associated with acute hospital stay Usually associated with dys-continuity in terms of: Usually associated with dys-continuity in terms of:  Health care providers  Reimbursement  Information flow  Family involvement

Where Do We Die 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 Care needs of the dying unpredictable – can occur day or night Few systems of care responsive at home outside of hospice Few systems of care responsive at home outside of hospice 911 fast-track to acute care 911 fast-track to acute care Coverage in nursing homes –off hours poor 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 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 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 Poor systems for data flow across different venues Communication about end-of-life issues challenging – requires high-level skills 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 In many cultures communication about dying is indirect, non-verbal and through the context

Skills in Caring Educational deficiencies abound in palliative and end-of-life care Educational deficiencies abound in palliative and end-of-life care Where skill exists, difficulty accessing skilled practice Where skill exists, difficulty accessing skilled practice  Example: lack of palliative care consults Lay skill deficiencies: 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 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!” 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