Transcript Advance Directives, and The Values History

The Role of ‘Family’ in
Advance Care Planning:
A Fourth Generation Advance Directive
David J. Doukas, M.D.
William Ray Moore Endowed Chair of
Family Medicine and Medical Humanism
University of Louisville
Learning Objectives

Describe two ethical principles that help guide
the actions of health professionals in
addressing end-of-life challenges

Delineate the rationale for the expanded use
of loved ones in future medical care decisions
Informed Refusal

The Principle of Respect for Persons (Autonomy)

The Principle of Beneficence
The Triad of Classic
Proxy Refusal Cases
•
The Karen Ann Quinlan Case (1976)
•
The Nancy Cruzan Case (1990)
•
The Terri Schiavo Case (2005)
Key Cases & Their
Consequences
Quinlan

The Natural Death Act
Cruzan

The Patient
Self-Determination
Act (PSDA)
The Case of Terri Schiavo

Terri Schiavo was in a PVS.

Her husband, Michael, related that she
would not want treatment in a PVS.

Her parents, Bob and Mary Schindler,
maintained she might recover with
treatment.
Timeline in Brief (Courtesy of cnn.com)
1990

On February 25, Terri Schiavo, 26, collapses
in her home from what doctors believe is a
potassium imbalance.

Oxygen flow to her brain is interrupted for
about five minutes, causing permanent
damage.

A court rules that she is incapacitated and her
husband, Michael Schiavo, is appointed as
her legal guardian.
1993

Terri Schiavo's parents, Bob and Mary
Schindler, fall out with Michael Schiavo
and begin to schedule their visits to
Terri on different days.

The Schindlers later try and fail to
have Michael removed as Terri's
guardian.
1998
Michael Schiavo petitions a court to
have his wife's feeding tube
removed.
2000-2005
 Repeated
attempts to remove Ms.
Schiavo’s feed tube are challenged
 Ms. Schiavo is determined by 2 of 3
neurologists to be in a PVS
 Florida Legislature attempts to
intervene to continue feeding
 11th Circuit U.S. Court of Appeals
in Atlanta, Georgia Denies Appeal
Schiavo

The Need to
Address Family Dynamics
in Advance Care
Planning
Allow for patients to decide
proactively what medical
procedures and treatments
are done to their body, either
in the form of an instruction
or a proxy designation.
The First Three Generations of
Advance Directives
The DNR/DNAR and Termination of
Treatment Orders (1st Gen: Reactive)
The Living Will (2nd Gen: Proactive)
The Durable Power of Attorney
KEY EBM RECOMMENDATIONS FOR PRACTICE
Clinical Recommendation & Evidence Rating
•
A = Consistent, good-quality patient-oriented
evidence;
•
B = Inconsistent or limited-quality patientoriented evidence;
•
C = Consensus, disease-oriented evidence,
usual practice, expert opinion, or case series.
TALK
Patients should be given the
chance to review decisions and
have interim discussions with
their physicians to improve the
stability of their end-of-life
choices.
Level B
FAMILY
Patients should be offered a familybased decision-making plan
because some cultures prefer
family decision making over the
individualist approach inherent in
conventional written directives.
Level B
TAILOR
Patients with chronic and terminal
disease, such as acquired
immunodeficiency syndrome,
cancer, and end-stage lung
disease, should be offered advance
directives that are specific to their
disease.
Level C
Third Generation Directives:
Eliciting of Values

The Values History (1988) by Doukas
and McCullough

Medical Directive (1991) Emanuels

Five Wishes (mid-1990’s)
The Values History
by Doukas and McCullough
 Specific
value-based directives for
various medical interventions.
 Used
as a supplement to an existing
living will or durable power of attorney
for health care
Section I. Values Section
Quality of Life Values
Section II. Directives Section
Specific Interventions (and Trials)
•
From: Doukas DJ, Reichel W, Planning for Uncertainty: A
Guide to Living Wills and Other Advance Directives for Health
Care, 2nd Edition, Baltimore: John Hopkins University Press,
2007.
One Specific Family-Based Directive:
The Proxy Negation
“I request that the following person(s)
NOT be allowed to make decisions on
my behalf in the event of my disability or
incapacity:………………………….”
The Use of Advance Directives:
Ethical Perspectives
•
Physician, Patient, and Family
Perspectives are needed
•
Values: Are Correlated with Advance
Directive selection
•
Precision Helps in surrogate decisionmaking
…and in the Wake of
Terri Schiavo’ Case…
We Need to Get Patients
AND
Their Loved Ones
Involved
The Family Covenant: A 4G-AD
•
Looking at the roles within the
physician-patient dyad in future
discussions on advance directives.
•
The family covenant attempts to
account for, and accommodate,
competing interests between the
individual and identified loved ones.
The Family Covenant Has
Four Cornerstones:
1) The Family is the “Unit of Care;”
2) The Physician Is Charged With Comprehensive
Family Health;
3) Individuals in the Family Are Treated Within the
Context of the Family; and,
4) Family-based Medicine Realizes the Importance of
the Bio-psychosocial Model of Medical Care.
Key Considerations
•
An ongoing, growing, and flexible
voluntary health care agreement.
•
Requires negotiation and an agreement
of its boundaries.
•
Family members who decide not to
consent initially to the family covenant
would not be bound by it.
Key Considerations
•
Parameters of the covenant members would be
negotiated at the outset.
•
Members would discuss:
o How disputes would be handled,
o
How information would be shared,
o
How decisions would be made, and
o
How they envision the physician's and family
members’ role in their care before agreeing to
the covenant.
•
Time passes — trust accumulates in the
covenant.
•
The covenant can be renegotiated over
time.
Model Family Covenant:
I have entered a family covenant with my doctor,
Dr.___________________and the following family
members and friends:
_________________________________________
_________________________________________
_________________________________________
If other family members or friends are not included
above, they are not to be consulted about my health,
given medical information without my consent or that
of my proxy, and are not to be part of any medical
decision-making on my behalf.
My family covenant directs members to carry out my
autonomous values and preferences in the following
way, in conjunction with my living will and/or durable
power of attorney for health care:
[Potential Areas for Consideration]
[ ] Who Has Access to My Health Care
Information (Confidentiality)
[ ] Who Else May Participate in My Health
Care Decisions
[ ] Who Is My Proxy and Whom Else Should
He or She Consult (or Not)
A Typical Case
An 76 y.o. woman is 2 weeks post-op from colon
cancer surgery that has been discovered to be
metastatic. She is gradually deteriorating and has
a poor prognosis. She is obtunded from pain
medications and cannot express her wishes. She
never made out a valid living will or a Durable
Power of Attorney for Health Care. Two of her
children want “everything done,” while another
child wants all treatment stopped based on her
conversations with the patient.
Now what?
A Typical Case - Revised
An 76 y.o. woman is 2 weeks post-op from colon
cancer surgery that has been discovered to be
metastatic. She is gradually deteriorating and has
a poor prognosis. She is obtunded from pain
medications and cannot express her wishes. She
previously made out a valid living will as well as a
Durable Power of Attorney for Health Care. Two of
her children want “everything done.” Her health
care proxy is another daughter who states her
mother would want all treatment stopped based on
her values and preferences. Further, the patient
had identified the two other children in a Proxy
Negation and Family Covenant as not having
standing in her future health decisions.
Now what?
Pragmatic Queries on the Use of
Advance Directives
Q: Does the patient have an advance
directive (living will, DPA/HC, or
guardian)?
A: Initiate discussions for the infirmed,
as well as for any adult patient (bring
up yearly)
Q: Does the patient have a Values
History)?
A: If not, provide one and encourage
discussion with the patient and
between patient and family.
Q: Does the patient have multiple
family members involved in their
care?
A: Encourage a family covenant that
articulates who the proxy is and what
the role of other family members are
in the event of future incapacity.
Remember: “Be Prepared,
Lest the Alternative is Your Want”