When the Needs of the Family and the Medical Staff Conflict : Ethical, Cultural and Spiritual Dimensions The Difficult Provider/Family Relationship

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When the Needs of the Family and the Medical
Staff Conflict Ethical, Cultural and Spiritual
DimensionsThe Difficult Provider/Family
Relationship

• Ralph Ciampa, Director
• Pastoral Care Department
• Hospital of the University of Pennsylvania

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Five Assumptions of Pastoral Care

• Health is Holistic
• Illness Happens to Families
• Loss is Pervasive
• Emotions Disguise Loss
• Loss Does Not Have to Destroy Us

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• Many of us exist in a web of family relationships
• Most of us are quite handy with denial
• Patients come to us with unique and interesting
  stories

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Who is the guest here?
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As a provider team,we may be the guests in an
80-year-old story-line unfolding before us
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When the Needs of the Family and the Medical
Staff Conflict Ethical, Cultural and Spiritual
DimensionsThe Difficult Provider/Family
RelationshipWhat does God have to do with this?
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• What does Difficult have to do with it?
• What does Family have to do with it?
• What does Culture have to do with it?
• What does Spirituality have to do with it?
• What does Ethics have to do with it?

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What does Difficult have to do with it?

• One dies just as it comes one dies a death
  that belongs to the disease one has (for since
  one has come to know all diseases, one knows too,
  that the different lethal terminations belong the
  diseases and not to the people and that the sick
  person has so to speak nothing to do
• 1910 The Notebooks of Malte Laurids Brigge,
  Rilke (1875-1926)

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What does difficult have to do with it?

• Annual US Health Care Costs
• - 1.8 trillion
• 15- 20 Percent of GNP devoted to US Health Care
• 44 million Americans Uninsured
• Arnold Relman, MD lecture 2005

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What does difficult have to do with it?

• 90 of respondents to a Gallup Survey
  commissioned by the National Hospice Organization
  in 1996 desired to die at home
• The number of people dying in hospitals or other
  institutions continues to rise
• - 50 died in institutions in 1949
• - 61 in 1958
• - 74 in 1980
• - 80 in 1990

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• What does Difficult have to do with it?
• What does Family have to do with it?
• What does Culture have to do with it?
• What does Spirituality have to do with it?
• What does Ethics have to do with it?

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What does Family have to do with it?Holding
onto ourselves as persons through those profound
experiences which are now routinely attended by
modern medicine

• Many of our most difficult treatment questions
  arise when patients cannot speak for themselves
• Families may introduce a difference in degree
  of difficulty around decisions simply by the
  number of needs, opinions, agendas and dynamics
  to be dealt with
• Families may introduce a difference in kind to
  the context of the decisions

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George Burns Happiness is a large, close-knit
family
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in another city
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What does Family have to do with it?Holding
onto ourselves as persons through those profound
experiences which are not routinely attended by
modern medicine

• Many of our most difficult treatment questions
  arise when patients cannot speak for themselves
• Families may introduce a difference in degree
  of difficulty around decisions simply by the
  number of needs, opinions, agendas and dynamics
  to be dealt with
• Families may introduce a difference in kind to
  the context of the decision

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Families may introduce a difference in kind to
the context of the decisions. Patient in the
Trauma Bay is

• Beloved Grandmother
• Grieving Widow
• Lonely Sister
• Brave Adventurer

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Families may introduce a difference in kind to
the context of the decisions. Patient in the
Trauma Bay is

• Beloved Grandmother/Grandfather
• Grieving Widow/Widower
• Lonely Sister/Brother
• Brave Adventurer
• Lousy Driver
• Practiced Denier

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• What does Difficult have to do with it?
• What does Family have to do with it?
• What does Culture have to do with it?
• What does Spirituality have to do with it?
• What does Ethics have to do with it?

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• What does Difficult have to do with it?
• What does Family have to do with it?
• What does Culture have to do with it?
• What does Spirituality have to do with it?
• What does Ethics have to do with it?

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John Ehman Study of Pulmonary Patients at the
Hospital of the University of Pennsylvania,
(177 surveys from 214 patients approached)
1997
I consider myself to be Non Religious (1) 6
(2) 7 (3) 36 (4) 29 (5) 22 Very
Religious I believe that prayer may sometimes
influence recovery from an illness. 90 I
believe in life after death. 70 I have
spiritual/religious beliefs that would influence
my medical decisions if I become gravely ill.
Agree or
Strongly Agree 45
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John Ehman Study of Pulmonary Patients at the
Hospital of the University of Pennsylvania (
Contd)
If I become gravely ill then I would like a
doctor to ask me whether I have
spiritual/religious beliefs that would influence
my medical decisions. Strongly disagree
7 Disagree - 9 Agree 42 Strongly agree
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John Ehman Study of Pulmonary Patients at the
Hospital of the University of Pennsylvania (
Contd)
If I become gravely ill then I would strengthen
my trust in a doctor if he or she asked me about
any spiritual/religious beliefs that would
influence my medical decisions. Strongly
disagree 7 Disagree - 10 Agree 39
Strongly agree 27 My doctor has already asked
me whether I spiritual/religious beliefs that
would influence my medical decisions 15 Yes
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Sammy Davis , Jr. When an irresistible force
such as you Meets an old immoveable object such
as me. You can bet as sure as you live. Something
gotta give. Something gotta give. Something gotta
give.
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What does Spiritual have to do with it?

• The irresistible urge to control our fate through
  technology and denial
• The immovable object of our mortality
• Something gotta give
• The helpful alternative for providers is to keep
  focus on attainable goals of treatment and
  realize the inevitable limits of treatment
• The hopeful alternative for families is to seek a
  spiritual answer to the mystery of our shared
  finitude and mortality

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M. Scott Peck, M.D., Denial of the Soul
Spiritual and Medical Perspectives on Euthanasia
and Mortality, Harmon Books, 1997
Peck defines the soul as a God-created,
God-nurtured, unique, developable, immoral human
spirit. Representing a Christian viewpoint that
not all would share, he continues , Herein lies,
I believe the meaning of life. Why would God
not only create us , but continue to nurture us
unless, we were developableI defy you in your
imagination to concoct a more ideal environment
for human learning than this life on earth. It
is a life filled with vicissitudes and
existential suffering, but as Benjamin Franklin
said, Those things that hurt instruct. Many
have referred to earth as a vale of tears. Keats,
however went deeper when he called it the vale
of soul-making. (p.152)
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What does Difficult have to do with it?What does
Family have to do with it?What does Culture have
to do with it?What does Spirituality have to do
with it?What does Ethics have to do with it?
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What does ethics have to do with it?

• Classic Bioethical dilemmas of competing goods
• Communication problems
• Concept of personhood
• Justice issues

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What does ethics have to do with it? Classic
Bioethics Dilemmas

• Autonomy
• Beneficence
• Non-Malfeasance
• Justice
• Beauchamp and Childress Principles

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What does ethics have to do with
it? Communication problems

• The act of labeling patients as difficult
  typically has the effect of locating the problem
  with the patient
• - See MacDonald, M. Seeing the Cage Stigma
  and its Potential to Inform the Concept of the
  Difficult Patient. Clinical Nurse Specialist
  17,no.6 (Nov 2003) 305-310
• The label of difficult patient tends to be well
  communicated among staff.
• - See Carveth, J.A. Perceived Patient
  Deviance and Avoidance by Nurses. Nursing
  Research 44,no.3 (May-Jun 1995) 173-178

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What does ethics have to do with it? Concept
of Personhood

• 20 of us are going to suffer from some cardiac
  or respiratory failure,with years of worsening
  symptoms, a few life-threatening episodes, and
  then eventually die.
• 20 of us will get cancer or another rapidly
  debilitating disease and we will be dead within a
  year.
• 40 of us will suffer from some form of dementia
  (mostly Alzheimers disease or a stroke) and our
  gradual, unrelenting path toward death will take
  8 or 10 or even 20 years, during which we will
  cease to be the person we were. We will linger
  on in some new state, depending on the care of
  others.
• David Brooks reflecting on Rand Corporation
  statistics in New York Times Commentary 2005

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David Brooks continued reflections

• In a society of individuals, family still
  matters.
• Will our moral philosophy catch up with this
  realitytechnology, which was supposed to be
  liberating, actually creates more dependence. We
  spend more of our lives while young and old
  dependent upon others, and we spend more time in
  between caring for those who depend on us.
• Can we moderate our ethic of individualism toward
  an ethic of family and community that takes
  account of our inter-dependence?

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What does ethics have to do with it?
Justice IssuesHealth status of African Americans
as Illustrative of Health Disparities Justice
Issues

• African Americans are twice as likely to have
  diabetes as whites
• Diabetic African Americans have kidney failure
  four times more often than diabetic whites
• About 40 of African Americans have
  cardiovascular disease, compared with 30 of
  white men and 24 of white women, and African
  Americans are 29 more likely to die from
  cardiovascular disease than whites.
• African Americans have the highest prevalence of
  hypertension which increases the risk of heart
  disease and stroke among all racial and ethnic
  groups in the U.S.
• African Americans have almost twice the risk for
  a stroke as whites and they are nearly 50 more
  likely to die from a stroke than whites.

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Health status of African Americans as
Illustrative of Health Disparities Justice Issues
( Continued)

• African Americans are 23 more likely to die from
  cancer than whites, and African American men die
  from prostate cancer at twice the rate of whites.
• African American women have a 30 higher death
  rate from breast cancer than white women.
• African Americans are 10 times more likely to die
  from HIV/AIDS than whites
• (Washington Post, December 20, 2004)

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• What does Difficult have to do with it?
• What does Family have to do with it?
• What does Culture have to do with it?
• What does Spirituality have to do with it?
• What does Ethics have to do with it?

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Two Tools to Help us be attentive to these five
dimensions of the provider/family relationship

• The intersection of aspects of hospital
  experience with aspects of our lives which tend
  to be shaped by culture
• Three narratives that shape our experience and
  our response to illness.

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Culture
Diversity
Hospitalization

• Authority
• Gender roles
• Beliefs
• Practices
• Language
• Age roles
• Values
• Dress
• Community
• Family
• Sexuality
• Shame
• Food

• Access
• Isolation
• Safety
• Effectiveness
• Respect
• Dignity
• Control
• Comfort
• Finances
• Information
• Fairness
• Alliance

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gender Beliefs Practice language Age Values authority Modesty Family Food sexuality shame Commu-nity
Access
isolation
Safety
effectiveness
Respect
Dignity
Control
Comfort
Finances
information
fairness
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Anne Fadiman, The Spirit Catches You and You Fall
Down Farrar, Straus and Giroux,1997
Fadiman quoting Harvard psychiatrist and medical
anthropologist, Arthur Kleinman If you cant
see that your own culture has its own set of
interests,emotions and biases, how can you expect
to deal successfully with someone elses
culture. An excellent resource for sharpening
our cultural awareness can be found at the
University of Texas at the following address
http//whissl.utmb.edu/WHISSL/index.asp
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The Renewal of Generosity Illness, Medicine,and
How to Live Arthur W. Frank
The bodily vulnerability that medicine resists
with honorable dedication is part of what humans
are not a contingent and undesired side effect
of being human a wart to be removed but a
part of what it is to be human, warts and all.
Thus medicine, in its dedication to the human
goal of reducing suffering, always risks
rejecting a fundamental aspect of our humanity.
Medicine,not in its mistakes but in its noblest
intentions, can inadvertently increase suffering.
We whose lives are dependent on medicine and
whose thinking is thoroughly imbued with medical
values (RC Remember, modern medicine can be seen
as a culture in its own right) risk failing to
explore the significance of an idea utterly
heretical to medicine that as a species, and as
individuals, we may need to be ill. We fail to
console ourselves with the recognition that
illness may be necessary to realize all we can
become as humans. (p.9) University of
Chicago Press, 2004
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We have to remember where we came from, so that
we know who we are

• Dorothy Love Jackson Ciampa
• (1909-2005)
• Christmas 1999