End of Life Care End of Life Care An instructive Case An instructive Case 52 y/o woman with long-standing diabetes
mellitus with severe peripheral neuropathy and
recent diagnosis of advanced cancer of the
pancreas, being managed at home by BJC
Hospice. Developed increasing difficulty with
painful extremities and abdominal pain. Initially
treated with oral morphine, but because of
increasing doses and poorly controlled pain, was
placed on an IV morphine PCA. An Instructive Case An Instructive Case The PCA was rapidly titrated up to 30 mg/h,
with boluses of 10-15 mg administered by
the family almost every 15 minutes. Patient
was brought to the hospital for intensive
management of apparent persistent
discomfort associated with increasing
agitation with hyperactivity, confusion, and
myoclonic jerking. Topics to discuss: Topics to discuss: 1. Giving bad news? 2. Prognostication? 3. Negotiation of goals of care? 4. Advance Directives? 5. Hospice and palliative care? 6. Pain management? 7. Use of methadone? 8. Addiction, dependence, tolerance? 9. Other symptoms (nausea, constipation, pruritis, delirium, etc)? End of life End of life in America today in America today Modern health care only a few cures live much longer with chronic illness dying process also prolonged Protracted life Protracted life - - threatening threatening illness illness > 90% predictable steady decline with a relatively
short terminal phase cancer slow decline punctuated by periodic crises CHF, emphysema, Alzheimers-type dementia Steady decline, short terminal Steady decline, short terminal phase phase Slow decline, periodic crises, Slow decline, periodic crises, sudden death sudden death Symptoms, suffering . . . Symptoms, suffering . . . Multiple physical symptoms inpatients with cancer averaged 13.5 symptoms,
outpatients 9.7 greater prevalence with AIDS related to primary illness
adverse effects of medications, therapy
intercurrent illness Symptoms, suffering . . . Symptoms, suffering . . . Multiple physical symptoms pain, nausea / vomiting, constipation,
breathlessness weight loss, weakness / fatigue, loss of function . . . Symptoms, suffering . . . Symptoms, suffering Psychological distress anxiety, depression, worry, fear, sadness,
hopelessness, etc 40% worry about being a burden Place of death . . . Place of death . . . 90% of respondents to NHO Gallup survey
want to die at home
Death in institutions 1949 50% of deaths 1958 61% 1980 to present 74% 57% hospitals, 17% nursing homes, 20% home, 6%
other (1992) . . . Place of death . . . Place of death Majority of institutional deaths could be
cared for at home death is the expected outcome Generalized lack of familiarity with dying
process, death Physician training . . . Physician training . . . No formal training, physicians feel ill equipped They said there was nothing to do for this young man who was end stage. He was restless and short of breath; he
couldnt talk and looked terrified. I didnt know what to
do, so I patted him on the shoulder, said something inane,
and left.
At 7 am he died. The memory haunts me. I failed to care
for him properly because I was ignorant. . . . Physician training . . . Physician training 1997-1998: only 4 of 126 US medical
schools require a separate course
Not comprehensive, standardized
How can physicians hope to be competent,
confident? Hospice and Palliative Hospice and Palliative Medicine as a Subspecialty Medicine as a Subspecialty ABMS
ACGME
Joint commission
Cancer centers
US News and World Report! Palliative Care circa 1987 Palliative Care circa 1987 Management of patients with active,
progressive, far advanced disease. Prognosis is limited. Focus of care is patients quality of life. Physical symptom control primary goal. Hospice Care circa 1987 Hospice Care circa 1987 Special attention to all symptoms
(psychosocial, spiritual, emotional).
Patient AND family is focus.
Multidisciplinary.
Physical palliation care only one facet.
Terminal illness (6 months or less,
assuming) Hospice/Palliative Care Venn Hospice/Palliative Care Venn Diagram 1987 Diagram 1987 Hospice Palliative Care Palliative Care circa 2007 Palliative Care circa 2007 Everything that hospice is except!: Palliative Care circa 2007 Palliative Care circa 2007 Difference #1: Life-limiting illness rather than terminal (?all patient from cradle to grave?!) Difference #2: Active treatment of underlying disease not excluded. Difference #3: Hospice is a program (rules, regulations, etc), PC is an
approach. Hospice Care circa 2007 Hospice Care circa 2007 . . Patients closer to death
Tends to be more practical and less
invasive.
Futility non-beneficial interventions minimized.
All hospice is palliative care, but not vice
versa. Hospice/Palliative Care Venn Hospice/Palliative Care Venn Diagram 2007 Diagram 2007 Palliative Care Hospice The Future: The Palliative The Future: The Palliative Care Continuum Care Continuum Health services that range from aggressive
and invasive modalities to
supportive/symptomatic care.
Plan of care adapts to patients needs and
disease progression. Hospice Hospice Palliative care Palliative care Curative / remissive therapy Curative / remissive therapy Presentation Presentation Death Death Understanding Hospice Understanding Hospice the the Myths Myths Myth #1 Myth #1 Hospice is a place. Hospice is a place. 1. Philosophical approach.
2. Multiple locations.
3. Mulitple caregiver arrangements. Myth #2 Myth #2 Traditional care Traditional care systems already provide this systems already provide this care. care. 1. Multi- and inter-disciplinary. 2. Expertise not taught in traditional
medical education. 3. Core and additional services not
provided elsewhere. Myth #3 Myth #3 Hospice is anti Hospice is anti - - therapy. therapy. 1. Medically aggressive goal is changed.
2. More aggressive palliative care
increasingly accepted. Myth #4 Myth #4 Hospice is only for Hospice is only for cancer. cancer. 1. 2000 non-cancer patients 49%.
2. Parkinsons disease and heart disease
fastest growing groups.
3. Focus is prognosis, NOT diagnosis. Myth #5 Myth #5 Hospice is custodial Hospice is custodial care. care. 1. Patients may be ambulatory and non-
homebound.
2. Far more than nursing care. Myth #6 Myth #6 Hospice is anti Hospice is anti - - physician. physician. 1. Attending must certify hospice
appropriateness.
2. Attending is physician of record, and
directs plan of care. Myth #7 Myth #7 All dying patients All dying patients should have hospice care. should have hospice care. 1. Different personal goals. 2. Cultural attitudes. Myth #8 Myth #8 Hospice is limited to Hospice is limited to 6 months. 6 months. Absolutely NOT!! The Six Month The Six Month rule rule (HCFA, Sept 2000) In no way are hospice beneficiaries restricted to six months of coverage. There is no limit on how
long an individual beneficiary can receive hospice
services, as long as they meet the eligibility
criteria. As long as a physician continues to
properly and conscientiously recertify the six-
month prognosis, a beneficiary can continue to
receive the hospice benefit. The Six Month The Six Month rule rule (Benefits Protection and Improvement Act, December 2000) Certification of a terminal illness for hospice shall be based on the physicians
or medical directors clinical judgment
regarding the normal course of the
individuals illness. The Six Month The Six Month rule rule (DHHS/HCFA 2001) Terminal illness is defined as being a life expectancy of six months or less if the
illness runs its normal course Criteria for Referral to Hospice Criteria for Referral to Hospice Desire to pursue a palliative approach to
care. (NO specifics about what is appropriate care.) (NO absolute requirement for primary
caregiver.) Terminal illness with a life expectancy of 6
months or less (assuming). Medicare Benefit . . . Medicare Benefit . . . Capitated progam.
Benefit periods.
Levels and locations of care. Routine home care. General Inpatient. Respite Inpatient. Continuous homecare. . . . Medicare Benefit . . . Medicare Benefit Be careful what you ask for
Success and acceptance = rules and
regulation, governmental oversight.
Operation restore trust (DHHS/OIG 1995). Guidelines and Criteria Guidelines and Criteria Determining terminal status in non-cancer
diagnoses.
NHPCO guidelines 1996.
Medicare criteria 1998.
Re-evaluate every benefit period.
Co-morbidities and general decline in health
status considered. A Barrier to its Own Success A Barrier to its Own Success = Late Referrals = Late Referrals Median length of stay 10-12 days.
Average length of stay 4-6 weeks.
Patient complaints and fingerpointing!
Survival over-estimated 63% of time.
EVERY STUDY LEADS TO SAME
ANSWER: EDUCATE!!! The Future of The Future of Hospice/Palliative Care Hospice/Palliative Care Transitional, bridge, and supportive care programs. Palliative care programs and units for inpatient as well as outpatient care. Academic palliative care teaching and research. Expansion of care to be more inclusive! open access programs.