Transcript Managing Patients with End-of

Managing Patients with
End-of-Life Issues
Maggie Selby, RN,MSN,CHPN
Medical Grand Rounds
April 3, 2009
Topics for Today



Discuss barriers to timely/effective
management of patients with end-stage
disease.
Discuss effective approaches to a
patient/family facing life-limiting illness.
Discuss sources for learning to effectively
identify/manage end-stage disease.
Causes of Death and Demographic/Social Trends
Early 1900’s
Current
Medicine’s Focus
Comfort
Cure
Cause of Death
Infectious Diseases
Communicable Diseases
Chronic Illness
Age Adjusted Death
Rate
1720 per 100,000 (1900)
865 per 100,000 (1997)
Average Life
Expectancy
50
76 males
Number of Persons> 65
years old
3.1 million
35 million (estimate fo
2000)
Site of Death
Home
Institutions
Caregiver
Family
Strangers/Healthcare
Providers
Disease/Dying
Trajectory
Relatively short
Prolonged
80 females
Impact on Patients
 Longer
life (76 instead of 50 years).
 Progressive chronic illnesses leading
to death…years of symptom
management
 More chance of becoming physically
dependent.
Impact on Families



Support systems are weakened by
geographical distances.
Isolation from the illness/death
experience leads to lack of
knowledge and increased
discomfort with death.
Greater risk of increased, profound
response to loss (grief).
Impact on Our Work

Older patient population - >65

Larger number with chronic progressive illness

Many of our patients have end-stage disease.

Growing feeling of frustration – feeling
unable “to help”. If we can’t “fix it”.

Patients/clients & families also feel helpless to
manage illnesses; to control elements of
healthcare.
“In American death is optional…”
PBS documentary

Focus on curative measures…exclude comfort
care.

Patient’s view of the physician’s role…physician
knows what is best; can cure all things.

Professionals’ unfamiliarity/discomfort
with care of the terminally ill client.

Cultural and religious beliefs.

Physician’s view of death as failure. Patient’s view
of disease/death as punishment.
Death in America…
 The
majority of American adults
surveyed ( 85%) responded that
they wanted to be cared for and to
die at home…according to a survey by the National
Hospice and Palliative Care Organization.
Death in America…
 Where
do people die:
 Hospital
– 56%
 Nursing Homes – 22%
 Home – 22%
What Americans fear…
 Pain
and suffering…prospect of prolonged
death, life sustaining technology, debilitating treatment,
pain and other unrelieved symptoms.
 Isolation…abandonment by healthcare providers,
burdening their families. Families feeing inadequate to care
for loved ones at home.
 Financial
resources.
ruin…depletion of all financial
Barriers to Timely/Effective
End-of-Life Care
Reluctance to talk about the subject.
 Personal and sensitive issues.
 Don’t recognize end-stage illness.
 Believe doctors (hospital) can cure
everything.
 Don’t know where to get guidance or
support with EOL issues.

Barriers to Timely/Effective
End-of-Life Care
Some
physicians/nurses view
approaching death as a personal or
professional ”failure”.
Lack of knowledge or awareness of
symptoms of end-stage disease.
Discomfort/lack of skill at “giving bad
news” or managing end-stage disease
effectively.
Reluctance to “take away hope”.
View: Death is Medical Failure
 The
human body, under the pressure
of illness and treatment…wears out.
 The
human spirit, under the pressure
of disease and treatment…becomes
tired.
Lack of awareness of end-stage
illness




Every chronic illness comes to an “endstage” or “terminal” state.
Point at which aggressive treatment is not
effective; palliative care is advised.
Recognizing “end-stage” illness
Guidelines by National Hospice and Palliative Care
Organization and Medicare.
Terminal Illness

Definitions:
– “Terminal illness” – one which cannot be
cured, which will cause or contribute to the
patient’s death.
– Time frame may be 3, 6, 12 months away.
– “Imminently dying”- death expected within
days or weeks…identifiable signs.
– “Actively dying” – process has begun, may last
days, hours.
Barriers: Physician Response
 How
to “give bad news”.
 How to begin to manage end-stage
illness.
 Communication with patient and
families.
 Reluctance to “ take away hope”.
Importance of physician
relationship with patient…
Telling the truth does not necessarily take away
hope.
 Hope is fostered by an honest and open
relationship with the physician/healthcare
provider.
 Trust is a key to maintaining hope.
 Patient’s worst fear is not death but
abandonment by the healthcare provider.

Ferrell and Coyle, Textbook of Palliative Nursing, Oxford Press,
2007, p. 343
Open, supportive
communication
 Not:
 “There’s
you.”
nothing else we can do for
 Rather:
 “You
need a different kind of care
now.”
Palliative Care
The active total care of patients whose
disease is not responsive to curative
treatment.
 Control of pain, of other symptoms, and of
psychological, social and spiritual
problems is paramount.
 The goal of palliative care is achievement
of the best possible quality of life for
patients and their families.

Goals of palliative care:
defined by the patient & family.
 Comfort...



Physical symptom control…aggressive.
Emotional/psychological support…no holds barred
Spiritual support…not necessarily religion.
 Successful


end of life closure…
Patient accomplishes what he/she wants to.
**All palliative care is not hospice; all hospice
care is palliative care.
End stage disease criteria
 Cardiovascular
– Edema not responsive to diuretics.
– Ejection fraction < 30%.
– Secondary organ failure.
– History of cardiac arrest/syncope.
– Transplant failure or not a candidate.
End stage disease criteria

Lung disease
–
–
–
–
–
Oxygen saturation <88% with oxygen.
Oxygen dependent.
Loss of lean body mass.
Bronchospasms not responsive to medications.
Increase in frequency and severity of
infections.
– Symptomatic at rest = HR>100.
– PCO2 > 50 mm HG
End stage disease criteria

Neurological
(Alzheimer’s, multi- infarct dementia, CVA,Parkinson’s)
– Progressive or disabling dementia.
– Level 7-C on the FAST scale (unable to ambulate,
communicate intelligently, incontinent).
– History of frequent infections.
– Patient/family do not want treatment of infections, or
feeding tubes.
– If feeding tube in place, pt. must have other life-limiting
illness which contributes to a poor prognosis.
– Significant weight loss over the past several months.
End stage disease criteria

Liver Disease
–
–
–
–
–
Hepatic encephalopathy.
Advancing cirrhosis.
Jaundice, ascites and edema.
Esophageal varices.
Diffuse hemorrhage secondary to coagulation
defects.
– Transplant failure and/or not a candidate.
End stage disease criteria

Diabetes
–
–
–
–

Severe vascular insufficiencies.
Maximal activity is bed to chair.
Retinopathy.
Neuropathy.
Renal Failure
– Discontinued or refuses dialysis.
– Transplant failure or not a candidate.
– Progressively worsening uremia.
End stage disease criteria
 AIDS
– Antiviral treatment failure
– Prolonged treatment has failed or not
desired.
– Antibiotic treatment not desired (except
CMV retinitis)
– Transfusions of blood products not
desired.
– Progressive disease of brain.
End stage disease criteria
 Debility,
unspecified
– Multiple organ system dysfunction.
– Significant CNS impairment but
insufficient number of end-stage
neurological criteria.
– Significant cardiopulmonary failure but
insufficient end-stage cardiovascular
criteria.
– Poor functional status.
Karnosfsky Performance Scale

100

90

80

70

60
–
Normal, no complaints, no evidence of
disease, no limitation.
– Able to carry on normal activity, minor signs
of symptoms of disease.
–Normal activity with effort, some signs or
symptoms of disease.
– Cares for self, Unable to carry on normal
activity.
– Requires occasional assistance. Able to
care for most of own needs.
Karnosfsky Performance Scale
50 – Requires considerable assistance and
frequent medical care.
 40 – Disabled. Requires special care and
assistance.
 30 – Severely disabled. Hospitalization
may be indicated. Death not imminent.
 20 – Hospitalization necessary (under
non-hospice circumstances). Very ill.
 10 – Moribund. Fatal processes
progressing rapidly. Actively dying.
 0 - Dead

Functional Assessment Staging
FAST
1-No difficulty either subjectively or
objectively
 2-Complaining of forgetting location of
objects. Subjective work difficulty.
 3-Decreased job functioning evident to coworkers
 Difficulty traveling to new locations
 Decreased organization capacity.

FAST cont.

4-Decreased ability to perform complex tasks
such as:
– Planning dinner for guests
– Handling personal finances e.g. (forgetting to pay bills).
– Difficulty shopping, etc.
 5-Requires assistance in choosing proper
clothing to wear for the day, season or occasion.
Repeatedly observed wearing the same clothing
unless supervised.
FAST cont.
 6-
Improperly putting on clothes
without assistance or cueing.
 Unable to bathe properly
 Unable to handle mechanics of
toileting
 Urinary incontinence
 Fecal incontinence.
FAST cont.
 7- Limited ability to speak less than 6 intelligible





different words in an average day or interview.
Speech ability is limited to the use of a single
intelligible word in a normal interaction.
Repetitive actions.
Ambulatory ability is lost – cannot walk without
assistance.
Individual falls over if no lateral arm rests on
chair.
Loss of ability to smile.
Loss of ability to help up head independently.
Hospice Medicare Benefit
 Criteria
necessary to qualify
– Life expectancy approximately 6 months
or less, given expected course of illness.
– Two (2) physician certification of
terminal illness.
– Patient/family choose palliative not
curative measures.
– Patient and family desire hospice care.
Hospice Medicare Benefit
 Coverage
– Medications*
– Equipment*
– Supplies and services*
– (All related to the terminal illness. Could include
ambulance, lab, X-ray, radiation therapy).
– Medicare, Medicaid, Insurance,
Veterans’ Services -
Resources

End-of-Life Physician Consortium www.EPEC.net
– Dr. Tracy Marx, OUCOM
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

Ohio Hospice and Palliative Care Organization
www.ohpco.org
– Hospice
– Advance Directives
– Ohio DNR Law information
Physician Orders for Life Sustaining Treatment
(POLST)
Respecting Choices – advance care planning
www.respectingchoices.com