Who is in charge?
Ethical dilemmas when patients and
families disagree on the treatment plan
Teresa Wachs, RN, CCM, BC
Advances in IBD
Hollywood Florida
December 14, 2013
Disclosure
I have no actual, potential or perceived
vested interests in relation to this
program.
What is an ethical dilemma?
An ethical dilemma is any situation in which
guiding moral principles cannot determine
which course of action is right or wrong.
“The biggest issue in medical ethics today is
the growing occurrence of conflict between
health care providers, their patients and
families over treatment options”
-University Of Toronto Joint Centre for Bioethics
Principles of Ethical Decision Making
Ethical Principles
• Autonomy: To acknowledge
that all people have intrinsic worth, the
right to hold views, to make choices and to take action based on their
values and beliefs.
• Beneficence: The duty to try to bring the improvements in physical or
psychological health that medicine can achieve.
• Non-maleficence: Going about these activities in ways that prevent
further harm or reduce its risk.
• Justice:
The concern of fairness or impartiality.
Fox,V.(1990). Caught between religion and medicine. AORN Journal, 52(1),131-146
Treatment Decisions
• Preferences of patent- The choices people make when
they are faced with decisions about health and medical
treatments
• Respect for autonomy- acknowledging the moral right
of every individual to choose and follow his or her own
plan of life and actions. Autonomy requires both freedom
from controlling influences and the capacity for self
determination.
• Self Advocacy-Does patient have capacity to advocate
on their behalf?
Who decides?
• Adult patient- able to understand treatment, risks, options and
benefits.
• Parents- legally authorized to consent for or refuse medical
treatment. We assume that parents are best able to ascertain their
child’s best interest.
• Mature minor- “minors over 14 are presumed to have capacity to
make medical decisions”- Cardwell v. Betchtol, 1987 New York
• Emancipated minor- married, in the armed services, bearing a
child, graduated from high school, living apart from one’s parents or
managing their own finances.
• Guardian/ Power of attorney- court appointment due to diminished
mental or physical or incapacitation.
Patient and Family Disagreement
• Do they understand the treatment proposed?
• Do they understand the risks and benefits?
• Do they understand the consequences of
refusing a treatment?
• Are there religious or cultural reasons for
refusal?
• Are there financial concerns?
Strategies to gain consensus
• Verify understanding- ask each to repeat the plan
• Ask what they think their life would be like with the proposed
treatment?
• Consider if finances are a barrier.
• Do they expect their body to look different?
• Do they think this will interfere with school or work?
• Would they be willing to talk to someone who has experienced this
treatment?
• What do they perceive the impact on their relationships and family
will be?
• Are there ways to make the treatment compatible with religious or
cultural beliefs.?
Resources
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Second opinion
Patient who has had a similar treatment
Clergy
Crohn’s and Colitis Foundation of America
Power of Two Program
Financial Counselor
Social worker
Psychologist
Case Study
Ellen is a 32 old female who has had Ulcerative Colitis for 20 years.
Recently married. No children. She is an attorney who typically works 50-60
hours per week.
She had 4 hospitalizations in the last 18 months.
Treatments have included:
1. Mesalamine
2. Azathioprine
3. Infliximab for 6 years
4. 4 course of prednisone in the last 2 years
Her gastroenterologist recommends a colectomy.
Her husband wants her to have the surgery right away, but Ellen refuses.
Possible Barriers?
For Ellen:
• Concern over fertility
• Body image
• Intimacy
• Loss of income during recovery
• Fear of unknown
Possible Barriers?
For her husband:
• Concern about cancer
• Difficulty seeing her sick
• Fear of her dying without surgery
• Caregiver fatigue
• Wanting a family
Cases to consider
•
Lori is a 15 year old female with Crohn’s that was diagnosed when she was 12,
She is stable on infliximab infusions. She is now refusing to come to infusions,
clinic appointments or go to school. She is defiant and disregards family rules.
What do you do?
What are your obligations?
• Alex is a 47 year old man with UC. He was diagnosed at 22 and has stopped
and started medications many times. He is undergoing a colonoscopy and
states that if a malignancy is found his wife not be told. After the procedure his
wife asks how things looked.
What do you tell her?
Cases to consider
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Ben is a 16 year old male with Crohn’s Disease diagnosed 2 years ago.
He was stable on azathioprine until 4 months ago when symptoms
increased and colonoscopy revealed moderate to severe disease. His
gastroenterologist recommends starting an Anti-TNF drug. Parents are
against this therapy because of what they have read about lymphoma.
They want to try the specific carbohydrate diet. Ben does not want to do
the diet and wants to start on the Anti-TNF so he will be healthy for the
soccer season.
What do you do?
What are your resources?
Clinical Ethics…
…is seldom a matter of deciding between
ethical and unethical, between good and
right verses bad and wrong; rather is
involves finding the better, most reasonable
solutions among the relevant options.
Thank you