Transcript Narrative Chaos: Ethics at the Family Meeting

Ethics in Action:
Working in the Patient Narrative
Presented by
Pat Tadel, MSN, RN
Clinical Ethicist/Mediator
National Patient Care Administrator
VITAS Innovative Hospice Care
Reflection
In spite of ongoing education and reinforcement of
ethical principles related to caring for patients
and families facing end of life decisions, moral
distress is experienced at the bedside.
Reframing the challenges from patient and
clinician viewpoint may create growth
opportunities for the interdisciplinary team with
positive impact on interactions with patient/family
and other healthcare workers.
Objectives
 Define ethical principles such as autonomy,
beneficence, and nonmaleficence in the
context of end-of-life care
 Verbalize how to draw out the patient narrative
and mediate goals that assure the voice of the
patient is heard
 Use specific ethics models to organize
discussion of ethical dilemmas and assure
ethical principles are met
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Biomedical Ethical Principles
 Beneficence – Promote Patient
Well-being
 Nonmaleficence - Do No Harm
 Autonomy – Respect Patient
Self-Determination
 Justice – Fair Allocation of Resources
 Veracity & Fidelity - Truth & Reliability
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Ethics
 “… is a process of reflection that aims to
transcend the diversity of moral
traditions when responding to value
conflicts about what is right and what is
wrong.” Bioethics Consultation Group, 1992
 Ethical conflicts occur when there is
• A conflict of values
• No clear right and wrong
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Beneficence
 Act in the best interest of the patient
 Weigh the benefits vs. burdens of any
proposed treatment
 Educate patient regarding condition and
prognosis
 Time-limited trials reinforce patient
participation in the process and assures
goals of care are met
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Nonmaleficence
 Cessation of treatments/interventions when
burdens exceed benefits
 Sensitivity to emotional and psychological
suffering
 Awareness and respect for family’s cultural
values, beliefs and practices
 Prioritize pain management
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Autonomy
 Recognizes the right of a patient with decisionmaking capacity to make decisions about
treatments according to his/her own beliefs,
cultural and personal values, and life plan
• Even when those decisions differ from what has
been advised or recommended by a physician
• Includes life-prolonging or sustaining therapy
• Unwanted treatments, including nutrition and
hydration
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Autonomy
 Only exists in the context of accurate
physiologic data
 Can any of us make a “good” decision with only
a piece of information, or some missing?
 Complex notion of well-being and quality of life
is symbolic of being in charge of one’s own life
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Case Study
J. is 50 yo female, who is terminally ill with breast
cancer, and living at home on hospice, with her
husband, Joe, as her primary caregiver. The
Interdisciplinary team is worried that she is not
allowed appropriate pain control because Joe doesn’t
like her “too sleepy”. They also fear she is unaware of
her prognosis because Joe, who is “loud &
controlling”, will not let her have “alone time” with the
team, and answers all questions for her.
She has already been taken to the hospital twice with
episodes of severe shortness of breath and chest
pain, and there are no advance directives or DNR.
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Self-Determination
What is communicated +
How it is communicated +
What is understood +
________________________
=
Foundation for Self-Determination
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Case Study
K. is a 65yo woman with ALS. Her illness began in the brain, and at this point she is
totally unable to communicate, although she can still walk a mile with her husband
holding her hand. She has been in hospice for four months when her son, a welleducated and articulate professional person, asks about when and whether it
would ever be appropriate to discontinue use of her feeding tube and allow her to
die without artificial nutrition. (She takes nothing by mouth.)
The son reports that K.’s husband is retired military; he is very committed to his wife
and her care and quite satisfied with hospice care. However, the son and his two
sisters are concerned that “Mom would never want to be kept alive like this.” He
reports that his mother has an AD, although a copy is not in the patient’s chart
and the healthcare team has no knowledge of it.
The physician states he “could never support a decision not to feed as long as the
patient is not in unrelieved pain, and the patient appears to be quite comfortable”.
He cannot understand why the son would want to discontinue feeding.
The husband comes forward with both a living will and DPOA, both signed 11 months
ago, right after diagnosis. The living will states that K. absolutely never wants any
kind of life-prolonging measures “once I am incapable of clear decision-making.”
She goes on to describe every kind of feeding tube, says that she doesn’t want
any of them, that she understands that she might feel hunger and that dying of
lack of nutrition is preferable to being kept alive on a feeding tube. She goes on to
say that she also does not want any kind of life-prolonging measure or treatment
that might be invented in the future that she can’t foresee. The DPOA names her
husband and son equally as decision-makers.
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Case con’t
The family is shocked and chagrined to reread the living will, which they
had not looked at since it was written. They agree that she became
incapable of making decisions or communicating three months after it
was written. Two months later she began to aspirate when her husband
was hand-feeding her, and a feeding tube was inserted.
Even when faced with the living will, the husband is reluctant to make a
decision to stop using the feeding tube the daughter reports that she
and her brother want to support their father, that even thought the
DPOA names them equally the brother will not fight their father over the
decision. The husband feels he is being asked to “murder my wife.”
Are the son and husband equal decision makers?
Does the husband really have a decision to make, or has the patient has
already made this decision?
Is there a dilemma in the existence of both the living will and the DPOA?
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Authenticity
 “Tied into notion of integrity and wish for one’s
life to have a coherent narrative”
 Beyond choosing, person has the capacity to
be a distinct individual
 Character, values change over time
• Restore, repair and reshape who one is in the face
of challenges
• Integration of “a new you”
• Catch up with what is happening
Case
Mrs. B is a 67 y/o female with breast cancer and mets to the liver and bone. She has
been told recently that, despite aggressive treatment, her liver is growing, probably
indicating advancing disease. She elected hospice, and you have seen her several
times while waiting for her discharge. Mrs. B remains awake, alert, and oriented,
and you genuinely enjoy your visits with her.
Despite being cachetic and very energy depleted, Mrs. B continues to cook for her
family when she is at home, usually her husband, and her daughter and son when
they visit. Both live within 10 miles.
Atypically, when you arrive for your next visit, Mrs. B is alone. She expresses relief
at your presence saying, "I HAVE to talk to you alone." She goes on to tell for you
the story of her disease, but interjects bits of her life history of which you had been
unaware. Three times during the 20 minute near soliloquy, she conveys to you her
life long history of independence. At one point she says, "I have always taken care
of people. That's who I am. That's what I do. So, you see, I can't possible go on
like this. I'm tired of being sick. I'm tired of being slow, and I HATE watching myself
waste away like this. This is NOT who I am." Mrs. B continues, "I can’t go on
hospice. Everyone will think I am a quitter. I want to be done with this but I can’t
have them see me weak. You've helped me with everything else so far. You need
to help me with this, hospice is giving up, and the doctor says there are other
things to try. I know they won’t help, but at least I won’t be giving up."
What do you do? (And no, no one comes through the door to help you avoid
having the conversation. It's you and Mrs. B for as long as whatever you decide to
say and do, takes.)
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Best Interest
 Best interest is not the same as self-determination or
authenticity but both are elements of best interest
• “Does the decision fit with his/her prior beliefs and
values?
• “Making my own decisions is linked to living a life that
is mine”
• Decisions don’t want to “run the risk that the person
would end up in a life” that would not be his/her own
 False beliefs and poor reasoning by surrogates may
have to accede to best interest considerations
 Patient’s interests include not only living in accordance
with his own values but being conscious of doing so
Brudney, D 2009 “Choosing for Another: Beyond Autonomy and Best Interests” Hastings Center Report 39 (2), 31-37.
Challenges in Decision-making Nearing
Life’s End
 Limited discussion of underlying health status and
disease trajectories
 Too many choices rather than a focus on goals
 Symbolism of interventions/what they will and won’t
achieve
 Recognition of legitimacy of patient’s culture and
validation of this specific to each individual within a
culture
 Allow patient and family “to catch up”
Gillick, M. 2009. “Decision making near life’s end: A prescription for change”.
JPM 12 (2), 121-125.
Case
Mrs. A. is a resident in a nursing home and is 91 years old. For several
years she has been in a persistent vegetative state (PVS). In PVS, all
upper brain function is lost. That means a person is no longer able to
control conscious actions such as thinking, speaking, and eating; the
person is permanently unconscious, although not in a coma.
In Mrs. A.’s case, the PVS was due to numerous strokes she had over the
years. She was not able to talk or recognize her family. She lay curled
up in bed, fed through her stomach by a surgically placed gastronomy
tube. She was provided good nursing care and seemed comfortable.
Jane, Mrs. A.’s daughter, was a devout Catholic. After much prayer and
many talks with her priest, Jane came to the conclusion that what was
being done for her mother was not right. She visited her mother every
day, remembering her as the busy, friendly, deeply religious woman she
had been. Jane felt that if her mother were able to decide, she would not
want to be kept alive in her present condition, but would what to be
released to the next life. So Jane got up her courage and asked the
doctor who was caring for her mother to stop the tube feeding and let her
mother die in piece.
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Case Con’t
The doctor said, “That would be both immoral and illegal. You have
no right to ask me to do such a thing.” This made Jane feel
terribly guilty, especially since one of her two daughters, the one
who lived out of state, had accused her over the telephone of
“wanting to kill Grandma”. Jane’s daughter, who lived in the
same city as her mother and visited her grandmother
occasionally, agreed with her mother’s request that Mrs. A. be
allowed to die.
Jane then talked with the nursing home administrator who, although
sympathetic to Jane’s struggle, told her that only a doctor could
order the tube feedings stopped. The administrator asked the
chaplain to talk with Jane, who by this time was feeling so
confused, guilty, and overwhelmed that she did not want to press
the issue any further.
Medical Futility
 Discussed in terms of the principle of
proportionality
 Benefit versus burden
 Interventions will not achieve the intended result
 Communication must include clarification of
misconceptions and unrealistic expectations
Withdrawing/Withholding
 Legal and ethical to honor patient’s choice,
legitimacy of advance directives, and
importance of surrogate decisions
 There is no ethical or legal distinction
between forgoing and withdrawing treatments
 BUT how does it feel?
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Case
G. is a 68 yo man with advanced COPD and Emphysema. He has
been on a hospice program for six months. At the time of
admission he had a living will which stated he did not want to be
intubated and kept alive on a ventilator.
Two hours ago G. became acutely short of breath. The hospice
nurse arrived and began a nebulizer treatment. She coached
him through pursed-lip breathing and relaxation exercises. At
present, G. is out of distress. He tells the nurse that he was
“dying by suffocating” and that it “was terrible” “I never want to
die like that. If that happens again and you can’t pull me out of it,
I want a tube down my throat and a machine to breathe for me.”
The wife calls you and wants to know what to do now, if she has
to decide for him?
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Benefit versus Burden
 Reconsider goals as situations change
 Benefits of treatments cannot be determined
independently from their application to a
specific patient’s:
•
•
•
•
Diagnosis and prognosis
Beliefs and values
Quality of life
Goals of care
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Double Effect




The act is good or morally neutral
Only a good effect is intended
Bad effect must not be a means to good effect
No alternative way to achieve good effect and
proportionally grave reason for running the risk
of bad effect
Case
D is an 85 year old man residing at the Quiet Night Home. He has
been on the hospice program for eight months. At that time, D was
capable of making a health care decision and signed his own
informed consent for hospice care. His condition has slowly
deteriorated since then. Yesterday, he was too weak to eat, and
the daughter requests he be moved to the hospital, and wants to
initiate tube feedings right away stating, that it is “right thing to do”.
D’s son is notified, who is in charge of D’s finances. D never
completed a living will or a durable power of attorney, but his son
states that they had discussed “being like a vegetable” and that D
had said many times he wouldn’t want to live that way.
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Hastening Death and the
Boundaries of Self
 Moral significance on the difference between
killing and letting die
 Uncertainty with where the boundaries of self
are in the context of end of life
 The self is not just subjective, psychological but
includes an objective reality
 IDG must look at principles of causation
• Best interest, futile care, and underlying condition
Clinician attitudes/Stress Factors
 Discomfort with acceptance of patient desires
for care and autonomy
 Unable to keep own values and opinions
separated from engagement with patient
 Not equipped to deal with complex issues and
tough decisions faced by dying patients and
their families
 Self-perceived lack of education or self-efficacy
 Disagreement with other IDG members
regarding treatment options for patient
Duke, G & Northam, S 2009. “Discrepancies among physicians regarding knowledge, attitudes, and
practices in end-of-life care. JHPN 11 (1) 52-59.
Martens, M 2009 “A comparison of stress factors in home and inpatient hospice nurses”
JPNA 11 (3) 144-145
Possible conflict areas
 IDG perception of motivation of surrogate
• Conflict of interest
• Not using substituted voice but own needs for decision-making
 Paternalism
 Justice
• Fail to meet needs of dying patients because of personal beliefs
• Patients deserve what is due them
Bosek, M & Cashman, G 2008.”Ethics in Practice” JONAS Healthcare Law, Ethics, and Regulation 10 (3), 75-80.
Popejoy, L, Brandt et al. 2009 “Intensive care unit nurse perceptions of caring for the dying”. JHPN 11 (3) 179-188.
Crenshaw, J 2009 “Palliative sedation for existential pain: An ethical analysis” JHPN 11 (2) 101-106.
Case Study
Mrs J is 88 years old. She has had dementia for 12 years. She lives with an unmarried
daughter, one of 6 adult children. Several family members live out of town.
Over the past 3 years she has become bedridden, incontinent and speaks less than 10
words. She has had 2 hospitalizations in the past four months. One for a bowel
obstruction and one for aspiration pneumonia. The daughter notes that she has lost
approximately 25 pounds and eats less than 25 %of a normal adult diet. She is
often agitated and crying. Pain is most apparent when the daughter tries to bathe
her and she cries out "leave me alone."
Charted physical exam: a thin, cachectic woman with a B/p of 120/80 and a
HR of 110. She previously required antihypertensive medication but has been
spitting out her pills. She has two stage 3 sores, one on her heel and one on her
coccyx.
The daughter has devoted all of her life to her mother for the past decade. She is
concerned about the weight loss and spends hours a day trying to feed her. Mom
often pockets the food or spits it out. There is a living will but the daughter refuses
to bring it in. She knows her mother is very ill but cannot bear the idea that she is
"starving to death"
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Grief Reactions
 Grief reaction for surrogates related to
withdrawing/withholding and letting go
• Families must begin to grieve to make
decisions
• Pre-grief requires recognition that loss is
coming
• Reflective transition must occur to find peace
with decisions made
• A process which takes time
Moral Dilemma: Refusal to Care
 Conscientious objector
• Lack of training related to ethics and law
• Religious or value conflicts
 Conscience as defined by Baker
• Internal sense of responsibility that influences
judgments regarding right and wrong actions
• Consequence of internalization of norms and
mores of cultures
• Representation of uprightness and totality of the
person
Baker, T 1996. “Descriptive and normative ethics: conscientious objection. Nurs Manag 27
(10) 32DD-32FF.
Cady, R 2008. “Refusal to care” JONAS Healthcare Law, Ethics, and Regulation 10
(2) 42-46.
Ethical Drift
 Perception that there are different agendas
bedside/management
 Ethical fragmentation
• Deviations from moral and ethical standards can
be justified by circumstances/situations or
specific patient
 Below awareness and fosters self-serving needs in
clinical and administrative practice
 Self awareness, values clarification, and conflict
resolution imperative for holding this in check
Kleinman, C 2006 “Ethical drift: When goo people do bad things” JONAS Healthcare Law,
Ethics, and Regulation 8 (3) 72-76.
Missed Opportunities
Structured Clinical guideline driven family meetings
 “preconference to assure consensus within IDG”
• Can occur at IDG meeting early on to assure
individualized plan of care
• Review medication and facilitation of patient narrative




Listening and responding to families
Acknowledging and addressing family emotions
Hear facets of the patient narrative
Pursuing key principles of clinical ethics and
palliative care
• Exploration of patient preferences and authenticity
• Explanation of surrogacy decision-making
• Affirmation of non-abandonment
Hoffman, L 2009 “End-of-life decision making: An evidence-based approach” Critical
Care Alert Jan 2009, 77-80.
Narrative
 Stories, motivations, values and goals that
are woven together constitute the
substance of real lives
 Text of past life, what said, how said, and
what was important to the patient
 Participants must illustrate the narrative not
only as what they believe
• But why and what lead to this belief
 Happens through properly timed openended questions by the literary coaches
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Narrative Chaos
 Fluid and living, changing over time
 Wander in and get your feet wet
 Sorting out the patient in the story
• Acknowledge many stories are part of one
 Spend more time listening than talking
 Use empathetic statements to demonstrate
engagement with the stories
 Provide explicit support for the family
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Advocacy Without Adversary
Existential Advocacy
“help patients become clear about what it is they
want to do by helping them discern and clarify their
values in the situation and only on the basis of that
self-examination, to reach decisions, which
express their reaffirmed, perhaps recreated,
complex of values”
• Co-experiencing to assist with authentic
decisions
(Gadow, 1980)
Narrative Consensus
 Challenge
•
•
•
•
Accurately identify suffering
Goals of care
Standard of car is a variation of cure
“refusing care” is declining interventions such as GT,
IVs, etc
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Existential Support: Elements of
Drawing In
 All have equal standing
 Introduce the purpose of conversation
 Prompt family to tell how they understand the
illness
 “Explanatory model” is their account of the
illness trajectory
 Sensitivity to labeling which may thwart
development of the narrative consensus
 Provider guides the discussion
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Conversation
 Derived from Latin “conversari”
• To turn about within
“vertere” - To turn
“con” - Together among
Shipley, J Dictionary of word origins (New York, Philosophical Library 1945: 95)
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Discourse
 Spans truth claims related to what is
• Medically necessary
• Ethically required
• What is “best” for patient
 And the moral claims regarding what ought to
be
 Formed by cultural structures and local
power relationships of all parties
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Really Hearing:
Vulnerable and unshielded
Chaos
 Wandering through a history of illness with a
patient and his family
 Asking if the patient is a veteran
 Listening to a lecture about keeping on the
oxygen
 Keeping legs elevated and wearing slippers
Qualities of Mediation





Self-awareness
Presence
Authenticity
Congruence
Integration
“While many would say that the settlement of the
dispute constitutes a successful outcome, others
contend that empowerment and recognition, not
settlement, are the hallmarks of success.”
Bowling & Hoffman, (2000)
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“Integrated’ Mediation
“Presence is a quality that can be developed in
all areas of our life. In the heat of any
personal conflict, one can work on developing
the capacity to be present to every aspect of
that conflict, while stepping aside from one’s
own point of view and learning to distinguish
one’s thoughts, from one’s emotions, from
one’s perceptions, from our conflict partner’s
point of view, to embrace a broader, more
integrated view…to be peace”
Bowling & Hoffman, (2000)
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Stepping in as Mediator
 Center oneself
• An image, symbol or concrete touch (hold on to the door
handle a brief moment longer)
 Provide neutral safety space to participants
 State the purpose of mediation
• Hear the voice of the patient through the narrative
• All have a piece, allow all stakeholders a voice
• All have a common focus, what is best for the patient
Let Go of YOU
 Model through body language, tone and
listening how all can be part of process
 Engaged in the process not outcome
 Know your BANTA (Best alternative to a
negotiated agreement)
 EMBRACE Conflict!
Remember to…
 Demonstrate transparency through clarifying
statements
 Keep in mind the family, not we must live with the
decisions
 Not repeat hostile or volatile words, but acknowledge
the feelings behind them or summarize the information
in them
 End summaries with a question to move the discussion
forward
 Ask clarifying questions which draw all in
 Offer solutions for all or part of the dispute
Sorting It All Out
Using the 4 Box Method
Medical Indications
Patient Preferences
Quality of Life
Contextual or External
Features
Jonsen,A.R., Siegler,M. & Winslade, W.J.(2010) Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical
Medicine. 7th Ed.. New York:McGraw-Hill
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4 Box Method
Medical Indications
Patient Preferences
Principles of Beneficence and
Nonmaleficence
Principle of Respect for Autonomy
What are the goals of treatment?
What are the probabilities of success?
Is the problem acute? chronic? reversible,
emergent?
Is patient mentally capable and legally
competent? Evidence of incapacity?
Has patient been informed and understands?
Is patient unwilling or unable to cooperate?
Why?
Quality of Life
Contextual or External
Principles of Beneficence and Nonmaleficence
and Respect for Autonomy
What are prospects for return to normal life?
Are there biases which might prejudice
provider’s evaluation of patient’s quality of
life?
Are there plans for comfort and palliative
care?
Principles of Loyalty and Fairness
Are there family issues that might influence
treatment decisions?
Are there financial and economic factures?
Are there limits on confidentiality?
Are there religious or cultural factors?
Problems with allocation of resources?
Jonsen,A.R., Siegler,M. & Winslade, W.J.(2010) Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine.
7th Ed.. New York:McGraw-Hill
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Professional Fulfillment and Potential for
Job Satisfaction and Retention




Upholding the vulnerable
Continuing the legacy
Meeting needs in unexpected ways
Attending to the essential ordinary
Perry, B. 2009 “Achieving professional fulfillment as a palliative care nurse” JHPN 11, (2) 109-118.
Hudacek, S, 2008. “Dimensions of caring: A qualitative analysis of nurses’ stories”. Journal of Nursing
Education 47 (3) 124-129.
“We can say we have
done ethics well if we
have asked all the right
questions to see what
is the right answer for
this patient as a part of
this team at this time”
M. Murray Mayo, RN, PhD Ursuline College,
The Breen School of Nursing
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References for further exploration
Approaching Death: Improving Care at the End of Life. Washington, DC. Institute of Medicine / National Academy Press.
1997.
Annals of Internal Medicine ACP-ASIM Consensus Panel on End of Life Care reports including “Palliative Care in
Patients Lacking Decision Making Capacity” 18 May 1999
Buckman R. How to Break Bad News:A Guide for Health Care Professionals. Baltimore, M.D. The Johns Hopkins Press’
1992.
Byock, I., http://www.dyingwell.com/
Code of Medical Ethics: Current Opinions ( 2002-2003) AMA.
Covinsky, K.E., Fuller, J.D., Yaffe, K., Johnston, C.B., Hamel, M.B., Lynn, J., Teno, J.M., & Phillips, R.S., (2000).
Communication and decision-making in seriously ill patients: Findings of the SUPPORT Project. Journal of the
American Geriatrics Society, 48 (5), S187-S193.
Ersek, M., Kagawa-Singer, M., Barnes, D., Blackhall, L., & Koenig, B.A., (1998). Multicultural considerations in the use of
Advance Directives. ONF, 25 (10), p 1685.
EPEC curriculum www.jama-assn.org/ethic/epec
Fry, S.T., & Veatch, R.M. (2000). Case studies in Nursing Ethics. Boston: Jones and Bartlett Publishers.
Jonsen, A.R., Siegler, M., Winslade, W.J. (2010) Clinical Ethics. 7th ed. New York: McGraw-Hill.
Kinzbrunner, B.M, Weinreb, N.J., Policzer, J.S.(2002). 20 Common Problems. End of Life Care. New York, McGraw-Hill.
Oxford Textbook of Palliative Medicine. Eds. Doyle, Hanks, and McDonald. Oxford University Press 1999
Robinson, E.M. & Mylott, L. (2001). Cardiopulmonary Resuscitation: Medical Decision or Patient/Surrogate choice?
International Anesthesiology Clinics, 39 (3), 67-85.
Storey, P. & Knight, C (2002). UNIPAC Six: Ethical and Legal decision making when caring for the terminally ill. AAHPM
SUPPORT comprehensive bibliography and findings supplement J American Geriatrics Society May 2000
Yeo, M., Moorhouse, A., Khan, P., & Rodney, P. Editors (2010) Concepts and Cases in Nursing Ethics. 3 rd Ed.
Broadview Press. Ontario.
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