Late and End of Life
Topics:
The Basics
Jamie Capasso, DO
Geriatric Fellow
UCI Program in Geriatrics
Topics Covered:
After this presentation students….
• Will have a brief historical perspective in end of life medicine
• Will have an introduction in techniques of discussion of end of
life topics with patients
• Will be comfortable with Decision-making ability; capacity vs.
competency
• Can differentiate between Advanced directives vs. Living will
vs. POLST
• Be familiar with the terms Power of attorney vs. Surrogate
decision-maker
Topics Covered:
After this presentation, students….
• Will be familiar with Hospice: Philosophy, benefits offered,
common diagnoses and indicators
• Will have an introduction to Palliative Care
• Will know common myths and legality of Physician-assisted
suicide
1565- Physicians tending to a dying
patient
Historical Perspective…
• In 1835, Jacob Bigelow urged fellow members of the
Massachusetts Medical Society to withhold "therapies,” such
as cathartics and emetics, from hopelessly ill patients.
• In 1848, John Warren, the surgeon who performed the first
operation with ether anesthesia, urged that ether should be
used "in mitigating the agonies of death.“
• In 1953, John Bonica published the first textbook of pain
medicine, suggesting a change in how opioids could be used
for chronic pain.
• During the same time period, Dr. Cicely Saunders began work
with terminal cancer patients and established the first hospice
at St. Christopher’s in London in 1967.
Historical Perspective
• Parallel developments were occurring in many countries, and
the first US hospice was established in New Haven, CT in
1974. From there, hospice grew exponentially.
• 1982 marked hospice being named as an entitlement by the
Federal Medicare program.
• 1991: Patient Self-Determination Act- Hospitals required to
inform patients of their rights including:
• The right to accept or refuse treatment
• The right to have an advanced directive
• The right to facilitate their health care decisions
Topics Covered:
• Will have a brief historical perspective in end of life medicine
• Will have an introduction in techniques of discussion of end of
life topics with patients
• Will be comfortable with Decision-making ability; capacity vs.
competency
• Can differentiate between Advanced directives vs. Living will
vs. POLST
• Be familiar with the terms Power of attorney vs. Surrogate
decision-maker
End of Life Discussion
“Hope for the best, but prepare for the worst.”
• Allow equal time for hoping and preparing
This facilitates discussion of a broad range of topics pertaining to
future planning.
• Align patient and physician hopes
Hope is an important coping mechanism and gives patients and their
families gratification.
End of Life Discussion
“Hope for the best, but prepare for the worst.”
• Encourage, but do not impose, the dual agenda of hoping and
preparing.
Don’t block/ignore such feelings as fear, anger, sadness or anxiety.
Unarticulated fears are correlated to increased anxiety and
depression.
Name and discuss them.
• Support the evolution of hope and preparation over time.
Probe: If reluctant to discuss these matters, Why?
• Time your discussion early in the illness and revisit the
issues regularly.
• Respond to emotions
Communication strategies such as acknowledgement,
exploration, legitimation, and empathy.
Topics Covered:
• Will have a brief historical perspective in end of life medicine
• Will have an introduction in techniques of discussion of end of
life topics with patients
• Will be comfortable with Decision-making ability; capacity vs.
competency
• Can differentiate between Advanced directives vs. Living will
vs. POLST
• Be familiar with the terms Power of attorney vs. Surrogate
decision-maker
Competence vs. Capacity
• Competence defines a legal status. A person is legally either
competent or incompetent, with no gray areas in between. An
adult is assumed to be competent unless he or she is
determined by a court to lack the ability to make the decisions
required for living safely, at which time the court deems that
person incompetent.
Competence vs. Capacity
• Decision-making capacity implies the ability to understand the
nature and consequences of different options, to make a
choice among those options, and to communicate that
choice.
• Decision-making capacity is thus required in order to give
informed consent. When applied to medical decisions, this
requires that a person understand a diagnostic or therapeutic
intervention's significant benefits, risks, and alternatives
Topics Covered:
• Will have a brief historical perspective in end of life medicine
• Will have an introduction in techniques of discussion of end of
life topics with patients
• Will be comfortable with Decision-making ability; capacity vs.
competency
• Can differentiate between Advanced directives vs. Living will
vs. POLST
• Be familiar with the terms Power of attorney vs. Surrogate
decision-maker
Advance Directives
Include three parts:
1. Living will AKA Health care directives: Legal document that
spells out which medical treatments/life sustaining measures
you do and do not want.
2. Medical Power of Attorney AKA Durable Power of Attorney
for Health Care: designates an individual (proxy) to make
medical decisions on your behalf if you are unable.
Advance Directives
3. DNR or Code status designation
Advance Directives
• MPOA goes into effect only when a patient is deemed
incapacitated by illness.
• These documents do not require a lawyer- most only require
two witnesses or a notary signature depending on the state.
• Some do not transfer state to state; have a patient that resides
in two states complete two different forms.
• Go to caringinfo.org for state-specific form
Advance Directives
• Some state’s AD allows you to also designate a primary
physician.
• Medicare reimburses for one “Advanced care planning” visit
per 5 years, or additional visits when there is a major change
in condition.
• Ensure that the patient has a discussion with the appointed
proxy and physician regarding clear wishes for their future
treatment.
POLST
Physician orders for life-sustaining
treatment
• Turns treatment wishes of an individual into actionable medical
orders.
• Designed to be portable between facilities.
• Supplements the Advance Directive.
• Differs in that the POLST contains medical orders for current
treatment, whereas the AD contains instructions for future
treatments.
• Adopted by 9 states so far, mostly on the east and west coasts.
There are 14 additional states developing programs.
Hierarchy of Surrogates
• Advance directives specified by the patient before (s)he
became incapacitated prevail, even over the contrary wishes
of guardians and other surrogate decision-maker.
Family members and friends take precedence next, usually in the
following order:
• Spouse
• Adult children
• Siblings
• Other family members
• Friend
• Health care providers follow, in the absence of other decisionmakers (not optimal)
We have a long way to go…..
• Less than 50 percent of the severely or terminally ill patients studied
had an advance directive in their medical record.
• Only 12 percent of patients with an advance directive had received
input from their physician in its development.
• Between 65 and 76 percent of physicians whose patients had an
advance directive were not aware that it existed.
• Advance directives helped make end-of-life decisions in less than
half of the cases where a directive existed.
• Advance directives usually were not applicable until the patient
became incapacitated and "absolutely, hopelessly ill."
• Providers and patient surrogates had difficulty knowing when to
stop treatment and often waited until the patient had crossed a
threshold over to actively dying before the advance directive was
invoked.
• Language in advance directives was usually too nonspecific and
general to provide clear instruction.
Topics covered….
• Students will be familiar with Hospice: Philosophy, benefits
offered, common diagnoses and indicators
• Will have an introduction to Palliative Care
• Will know the basics of Physician-assisted suicide
Question:
• An 86 y/o woman is hospitalized for symptoms of abdominal pain,
poor appetite, and progressive weight loss. Medical history of CAD
and DM. Her physical functioning has declined: She can only walk a
few steps and is dependent in all ADLs except feeding.
• CT of the abdomen and chest strongly suggest metastatic pancreatic
cancer. She has undergone many procedures and hospitalizations
and she doesn’t want anymore.
• She and her daughter inquire about hospice. Which of the following
services is covered under the Medicare Hospice Benefit?
•
•
•
•
•
A. Room and board in a long-term care facility
B. Nursing care in a post acute-care nursing facility
C. Hospital bed and bedside commode for home
D. Private-duty caregiver at home
E. Medications for diabetes and CAD
• Patients with Medicare part A are eligible for the Medicare
hospice benefit if they have a terminal illness with a life
expectancy of 6 months or less.
• The benefit covers a variety of services related to the terminal
diagnosis, including the provision of DME (hospital bed,
bedside commode.)
• It also covers home-health aides, homemaker services, nursing
visits, physician visits, social services, counseling, physical
therapy, occupational therapy.
• It covers medications for comfort and palliation, but not for
non-terminal conditions (the DM and CAD.)
Hospice
• In general, designed to shift the focus of care from curative to
comfort in a person nearing the end of life.
• Relies on physician assertion that if a patient follows the
normal course of their disease, their life span will be less than
6 months.
• Philosophy centered in multidisciplinary care, focusing on
maximizing the quality of life, not necessarily the quantity.
Team Members
Physician
Nurses
Home health aid
Social Worker
Chaplain
Volunteers
Common Hospice Diagnoses
• Cancer: failed or
decline treatment
• Heart failure:
frequent
hospitalizations, poor
symptom control on
max medicines
• AIDS
• Hepatic
failure/Cirrhosis
Common Hospice Diagnoses
• COPD: O2 dependent
• ESRD: decline dialysis
• Dementia: immobile,
nonverbal, frequent
illnesses
• Neurodegenerative
diseases
Topics covered….
• Students will be familiar with Hospice: Philosophy, benefits
offered, common diagnoses and indicators
• Students will have an introduction to Palliative Care
• Will know the basics of Physician-assisted suicide
Palliative Care
• Focus on symptom management, can complement Hospice
care, but can also be used while pursuing curative treatments.
• Symptoms of:
Pain
Dyspnea
Depression
Anxiety
Swelling
Nausea, GI distress
Palliative Care
• Can use modalities such as:
Medicines
Counseling
Acupuncture
PT
Procedures
Pet therapy
Topics covered….
• Students will be familiar with Hospice: Philosophy, benefits
offered, common diagnoses and indicators
• Will have an introduction to Palliative Care
• Will know the basics of Physician-assisted suicide
Physician-assisted Suicide
• Only legal in Netherlands, Belgium, and Switzerland. Oregon,
Montana, and Washington in the US have also legalized the
practice.
• It consists of offering a patient a prescription, medication,
information, or other intervention with the understanding
that the patient intends to use them to commit suicide.
• The term euthanasia is different: it implies active voluntary
euthanasia- this is when the physician actively intervenes to
end the life of a patient with their consent.
• “Passive,” or “indirect“ euthanasia refers to the practice of
removal of life-sustaining treatments such as ventilation or
artificial feeding. These practices are not euthanasia, and
considered legal and ethical.
Physician Assisted Suicide
• Palliative care often involves the administration of powerful
drugs including narcotics and benzodiazepines. These drugs
may hasten death in some cases. The difference is intent: in
these cases, the intent is to alleviate symptoms, not to end
life.
• If a patient expresses a desire to seek PAS, start by having a
conversation to inquire what their motivation is.
• Then, consider consultation with a palliative care specialist, or
conduct a comprehensive assessment of the patient’s
physical, psychological, social, and spiritual suffering.
• Address these issues with a multidisciplinary approach.
Questions?
References
• Hanks, Geoffrey W. C. Oxford Textbook of Palliative Medicine.
Oxford: Oxford UP, 2010. Print.
• "Law for Older Americans." American Bar Association. Web.
05 Apr. 2011.
<http://www.americanbar.org/groups/public_education/resou
rces/law_issues_for_consumers/patient_self_determination_
act.html
• Kass-Bartelmes, Barbara L. "Advance Care Planning:
Preferences for Care at the End of Life. "Agency for Healthcare
Research and Quality (AHRQ) Home. Web. 08 Apr. 2011.
<http://www.ahrq.gov/research/endliferia/endria.htm>
References
• "Frequently Asked Questions about Physicians Orders for LifeSustaining Treatment Paradigm (POLST)." OHSU Home. Web.
08 Apr. 2011. http://www.ohsu.edu/polst/patientsfamilies/faqs.htm
• Verdugo Hospice Care Center | Los Angeles. Web. 08 Apr.
2011. http://www.verdugohospice.com/hospice_circle.php
• "Download Your State's Advance Directives - CARING
CONNECTIONS - NHPCO." Home - CARING CONNECTIONS NHPCO. Web. 30 Apr. 2011.
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
References
• Applebaum P, Grisso T. Assessing patients' capacities to
consent to treatment, N Engl J Med 1988;319:1635-1638.
• "AMDA: Governance - Resolutions and Position Statements White Paper on Surrogate Decision-Making and Advance Care
Planning in Long-Term Care." American Medical Directors
Association. Web. 14 Apr. 2011.
http://www.amda.com/governance/whitepapers/surrogate/in
dex.cfm
• Emmanuel, Ezekiel J. "Euthanasia and Physician Assisted
Suicide." Up to Date. 3 Jan. 2011. Web. 20 Apr. 2011
References
• Mas, Joan M. Communication. Illustration. 29 September
2007. Online image. Flickr. 1 April 2011.
http://www.flickr.com/photos/dailypic/1459055735/
• Copyright (c) <a href='http://www.123rf.com'>123RF Stock
Photos</a> Image ID: 8058801
• Clip art courtesy of Microsoft