Surviving Chronic Illness Preserving Self Honoring Spirit

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Surviving Chronic Illness Preserving Self
Honoring Spirit

• Gretchen May-Fendo M.Div.,RRT, AE-C
• Outpatient Pulmonary Coordinator
• Reiki Master-Norma Pfriem Cancer Center
• Bridgeport Hospital, Bridgeport, CT

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The Epidemic of Chronic Illness

• 1987 -90 million Americans have a chronic
  illness
• 1998- number grew to 120 million
• at least 45 of all Americans have a chronic
  illness
• this accounts for 78 of our health care costs
• 2030- the number of Americans with chronic
  illness----171 million
• Jeffery H. Boyd, M.D., M.P.H. Being Sick
  Well, Baker Books, 2005

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3 reasons for the rapid increase

• Aging of the population
• Success of medical science
• good medical care actually increases the amount
  of chronic illness
• illness diagnosed earlier
• many patients who may have died survive
• Worsening Obesity
• CDC estimates obesity will soon surpass smoking
  cigarettes as the 1preventable cause of
  morbidity mortality.
• Jeffery H. Boyd, M.D.,M.P.H. Being Sick Well,
• Baker Books, 2005

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The Impact of COPDSource Global Initiative for
Chronic Obstructive Lung Disease, 200118
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Life with Chronic Illness

• The diagnosis of chronic illness has a
  significant impact on the patient and their
  caregivers
• Few persons are prepared to live with chronic
  illness.
• Chronic illness involves suffering.
• Suffering is one of the most profound and
  disturbing of human experiences.1
• Suffering does not refer to just maladies, and
  pains, with which we can and should cope.
• 1.Stan van Hooft, Hastings Center Report,
  28, 5, 1998

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Suffering

• Involves crisis and threats that constitute a
  degradation or alienation of our being.
• Eric J. Cassell, The Nature of Suffering and the
  Goals of Medicine, 2nd ed.,2003)

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Living with Lung Disease

• 58 percent say they panic when they cannot get
  their breath
• 52 percent feel they are not in control of their
  breathing and
• 52 percent admit that their coughing is
  embarrassing in public.
• 47 percent say they have a hard time making plans
  because of their condition
• 39 percent worry about having serious breathing
  problems when away from home.
• 66 percent say they expect their condition to get
  worse.
• AARC, Confronting COPD in America, 2000

• 600 people with COPD interviewed

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Chronic illness affects the person on many
levels and can bring suffering on all of these
levels

• Psychologically
• Socially
• Physically
• Spiritually

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Psychological ImpactSome patients say,

• They may feel unsafe by themselves.
• Loss of independence
• Fear
• They have a change in self perception/self image
• Feelings of loss
• Grief

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Social Impact

• Due to changing self perception the person may
  limit social interactions
• I dont like being seen with oxygen on.
• Fear of exposure to germs may lead to decreased
  social interactions.
• I am afraid that if I get another infection Ill
  die, so I dont go to parties anymore.

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Physically

• We cannot rely exclusively on physiologic
  outcomes for
• evaluating and assessing a patients well
  being.
• Or evaluating and assessing your own well being.

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Spiritual Impact

• Feelings of Isolation
• Why me?/ Why me, God?
• Feelings of abandonment that can lead to
  spiritual alienation

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Further issues for those with chronic illness

• Chronic Illness may make a person question their
  beliefs and values.
• Chronic illness creates uncertainty about life.
• How does one feel if they perceive themselves as
  impaired?
• Am I still whole?
• The image of self changes
• And, our culture values/highlights youth,
  vitality, and health
• Our culture often cloisters painful events

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People become introspective

• Questions arise about the value of life
• Philosophical/Existential questions
• The disease strikes right at the heart of how we
  value ourselves and how we perceive others will
  continue to value us.
• Will I be a burden?
• Can I remain independent?
• How do I do what I did before as an able
  bodied person?
• Again,
• alienation may occur,
• suffering may exist

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People with chronic illness have to work harder
at well being

• Well being is more complex than just having good
  health
• It involves
• Mind
• Body
• Spirit
• It involves the whole person

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The person may experience

• Denial
• Anger
• Bargaining
• Depression/grief
• Acceptance
• Elisabeth Kubler-Ross

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So why talk spirituality?

• Studies have shown that
• There is a positive correlation between
  spirituality and the ability to cope with chronic
  illness.
• M.Michelle Rowe, American Journal of Health
  Studies,
• Winter 2004

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God, Faith and Health.

• About 80-90 of these studies show there is
  something positive going on. Were swimming in
  empirical evidence.
• Jeff Levin, Ph.D., M.P.H.

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Spirituality and Medical Practice

• Studies suggest that many patients believe
  spirituality plays an important role in their
  lives
• that there is a positive correlation between
  patient's spirituality or religious commitment
  and health outcomes
• Patients would like physicians to consider this
  factor in their medical care.
• Gowri Anandarajah,M.D., Spirituality and
  Medical Practice, American Family
  Physician, vol 63, 1

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Spirituality, Well-Being and QOL

• John Hopkins Bayview medical center studied 77
  patients with RA.
• Spirituality was associated with happiness and
  positive health perceptions, even when disease
  was progressing. Arthritis Care and Research,
  vol., 49, 6, 778-783
• Results suggest having a spiritual orientation
  may facilitate emotional adjustment and
  resilience in people with chronic illness.
• Find meaning in their illness.
• They experience more positive feelings.
• They attend to positive elements in their lives.
• Cassie Gaines, John Hopkins Bayview
  Medical Center

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Journal of the American Medical Association

• Relationships between mental health and strong
  faith, devout prayer, and religious
  socialization, may have consequences that are far
  reaching an perhaps greatly underestimated.
  Religious involvement is associated with
• attendance at scheduled medical appt.
• Greater cooperativeness
• Better compliance
• Improved medical outcomes
• Koenig, H.G.,M.D.
• JAMA. Vol.288

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Controversy?

• believes there is no role for spiritual
  assessment tools by a physician
• debunks the view that religion is good for your
  health and demonstrates how attempts to link
  religion and medicine actually can cause harm
• while he does not dispute the fact that religion
  can bring a sense of comfort in times of
  difficulty
• Richard Sloan, Ph.D. Blind Faith, The Unholy
  Alliance of Religion and Medicine

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How is spirituality defined?

• Until recently spirituality and religion were
  used interchangeably.
• The word spirituality is derived from the Latin
  word spiritus which refers to breath, air, wind.
• The Oxford English Dictionary (OED) defines
  Spirit as that which animates the body the soul,
  the agent of vital conscious function.

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A different way to define spirituality

• Spirituality is an indicator of the human
  capacity for transcendence, it is defined in
  personal views and behaviors that express a sense
  of relatedness to a transcendent dimension or to
  something greater than self.
• Victor Fankl, The Will to Meaning

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Most important!!

• It does not matter how the OED or Webster defines
  spirituality
• What matters is that we have an awareness that
  spirituality is more
• individualistic.
• That we honor whatever it is that connects one
  to the spiritual

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So there are BIG questions?Big questions filled
with uncertainty

• Why me?
• Why me, God?
• What is the meaning of life?
• Uncertainty-this will affect how a person
  responds spiritually to a new diagnosis
• and to the challenge of living with chronic
  illness.

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• The uncertainty may challenge what was once a
  healthy spirituality
• The uncertainty may deepen ones spirituality
• Or some people may come to spirituality for the
  first time in their lives in a quest for answers.
• Spirituality may be how they make sense of this
  new situation.

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What are spiritual needs?How can we fulfill
these needs?

• Spiritual needs encompass 4 areas
• The need for love and relatedness
• The need for meaning and purpose
• The need for forgiveness
• The need for hope
• Shelly, J.A. S.Fish, Spiritual Care, 1988

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The need for love and relatedness

• At the time when patients feel the most need for
  relatedness they may feel isolated and alienated.
• the best tool is therapeutic use of self or the
  ministry of presence.
• Jan Pettigrew , PhD, R.N.
• Critical Care Nursing Clinics Of North
  America. Sept, 1990, vol.2 no.3, p.503-508

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The need for meaning and purpose

• Identify those areas in your lives that trigger a
  sense of the spirit.
• Utilize spiritual disciplines.
• Awaken the Sacred in every day life
• Prayer, meditation, mindfulness, visualization,
  church services, inspirational readings,mantras,
  music, painting, journaling, jokes and laughter
• A simple question,
• What makes you feel secure, energized, connected?

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The need for forgiveness

• One becomes introspective.
• Vulnerability exists.
• The response is often life review.
• Old hurts can way heavily on individual.
• Adding to the possible suffering.
• Forgiveness of self and of others can bring
  relief and serenity.

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What else can help?

• Reflection, possibly journal writing.
• Family should support loved ones in their inner
  reflection.
• Dialogue
• Support one another through dialogue

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The need for hope

• Studies have shown that people who have a
  developed spiritual discipline remain hopeful
  even when faced with adversity.
• What does remaining hopeful mean?
• OED-Hopeto get what one wishes for
• OED-archaic definition-to trust or rely upon

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hopefulness facilitates healing even amid chronic
illness.

• Hope comes in many forms
• Hope for cure
• Hope for healing
• Hope for comfort
• Hope for meaningful relationships
• Hope to live fully,come what may.
• Birx, Ellen, PhD, RN,
• Journal of Holistic Nursing, March 2006,
  vol., 24, 1, p.36

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How does one remain hopefulachieve
peace/serenity, joy

• People with chronic illness may not have much
  control over their external environment, but they
  can take charge of their inner environment
• Identify those aspects of their lives which
  trigger a sense of the spirit and in turn fuels
  their inner self.

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Living in the NOW!

• People with chronic illness often speak of
  present moment living as a spiritual practice.
• In the moment the fear of uncertainty dissipates
• Life is full, in the now.

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We as a community can help our patients to
preserve their spirit, honor their selves.

• Each encounter is an honor.
• Courage to engage in difficult conversation, this
  is our obligation.
• We may be the bridge to love and relatedness,
  meaning and purpose, forgiveness and hope.
• Be available for the experience!

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• Gretchen May-Fendo M.Div.,RRT,AE-C
• Outpatient Pulmonary Coordinator
• Bridgeport Hospital, Bridgeport, CT
• Phone [phone] fax [phone]
• mgmayf_at_bpthosp.org
• Reiki Master-Norma Pfriem Cancer Center
• Private Office number 203-993-4582