Caring for the Dying

							Caring for the Dying
      2007 Psyc 456
     Dusana Rybarova
         Compassion and empathy
         as basic human qualities
• We are biologically programmed to be
    cooperative, supportive, and altruistic
•   In the right environment empathy, compassion,
    and caring behavior will unfold naturally and
    both the caregiver and the care-recipient will
    grow and thrive from their participation in it
    (Larson, 1993)
•   Harsh and unloving childhood can inhibit the full
    expression of these tender, human qualities, but
    compassion and caregiving are part of our
    biological inheritance
    The Development of Altruism and
              Caregiving
• Newborns react by crying to distress of others in their
    presence
•   Children 1 ½ to 2 years old attempt to comfort a
    distressed person by patting, hugging, or presenting an
    object
•   Role-taking ability developing around 2-3 years of age
•   Later we are able to empathize beyond our immediate
    situation, beyond individuals (compassion for groups of
    people such bereaved parents, victims of an attack etc.)
•   50% of Americans report performing some kind of
    volunteer work during the past year
•   Later gestures of caregiving
    – Suggestions about how to solve problems
    – Trying to cheer others up
    – Alternative helping responses to reduce suffering in others
           Caregiving behavior:
        Biological and social roots
• Animals demonstrate almost universal tendency towards
  cooperation and altruism and tend to become aroused in
  the presence of a distressed member of their species
• Caring for injured, incapacitated members of group in
  chimpanzees and monkeys
• Survival value of altruism and caring essential for human
  species that is not physically superior to other species
   – Reciprocal altruism
   – Non-reciprocal altruism
• Support of compassionate and altruistic tendencies
  through social learning
   – Seeing reactions of others to caring acts and learning that
     responding with empathy and compassion is both rewarded and
     rewarding
           Caregivers Fears
– Caregiving can reveal a vulnerable, more fearful side
  of our nature
– We may face a mixture of compassion, anxiety, and
  fear
– How to relate to a dying person at other than
  superficial level
– Social barriers – expression of grief connected to the
  death of a patient is often considered unprofessional,
  associated with feelings of inadequacy and
  incompetence
             Caregivers Fears
• Fear of our own death
  – Experience of caring for a dying person can arouse our
    own fear of mortality without a conscious experience of
    it
  – It can lead to detachment from the person we are
    caring for
  – Important facing the issues and developing strategies
    of coping
• Fear of hurting the person we are helping
  – Often combined with time pressure, the urge to be
    perfect, often the necessity to make decision based on
    vague or incomplete information
  – Powerful emotional consequences of mistakes for a
    caregiver
             … Caregivers Fears
• Fear of Being Hurt
   – Fear of being the target of others’ anger
   – Fear of being hurt when our patient or a loved one finally dies
   – Repressed and unacknowledged feelings over long periods of time
     can generate ongoing stress and activate grief and fear from
     other parts of the caregiver’s life
   – Can result in depersonalized and dehumanized care
   – The fear and grief needs to be confronted and worked through
• Fear of Being Engulfed
   – Being immersed in the grief and stress of the dying, feeling used
     and defensive
   – The risks of either being overwhelmed by emphatic feelings for
     the dying, or slipping into depersonalized and dehumanized
     attitude
             Dying in a Hospital
• 40% of patients spent 10 days in coma isolated
    from family
•   Living wills stating that the patient should not be
    artificially resuscitated were not respected in half
    of the cases
•   1/3 of patients spent most or all of their life
    savings for unsought, unrequested, and vain
    efforts to postpone inevitable death
•   Nurse-advocates did not have any effect on the
    treatment of the patients
                  The Physician
• High priest in American society
• Physicians commit suicide at three times the rate of the
    population at large
•   79% reported that their care decisions were influenced
    by financial issues
•   Physicians are highly death avoidant, have inordinately
    high fear of death
•   Medical education leads to desensitization and
    dehumanizing attitudes
•   Have limited understanding of the social, psychological,
    spiritual, and comfort needs
•   Avoidance of dying patients
•   Caregivers grief is both unrecognized and expected to be
    so
Social Death and Depersonalization
• Social death
   – Patients treated by medical personnel they don’t know, isolated
     from their family and friends
• I.C.U. psychosis
   – Severe disorientation of patients reacting to windowless,
     mechanical environment
• Depersonalization
   – Dying in a strange, and sterile environment, isolated from
     spiritual nourishment, and loving support
• The conspiracy of silence
   – 74% of doctors avoids talking to patients about their terminal
     illness
   – About 80% of patients wants to know that they are dying
   – Closed awareness, suspicious awareness, mutual pretense
Genuine and compassionate care

• Education
   – Information about psychological aspects of death and care
     options of the dying
• Learning and applying coping strategies
   – Prevention of cognitive denial, emotional repression and
     behavioral passivity
   – Relaxation techniques, meditation, writing as a coping strategy,
     seeking advice, talking to colleagues, spiritual advisors and
     counselors
• Communication training
   – Attending workshops about effective communication with the
     dying
   – Seeking information about how to communicate about death
        The Hospice Alternative
• Hospice refers to a comprehensive philosophy of
    compassionate care for the terminally ill
•   Hospice care is mutlifocused and includes coping
    with the psychosocial, spiritual, and economic
    issues as well as medical problems
•   It is comfort-centered rather than cure-centered
•   Interdisciplinary team includes the nurse
    coordinator, the home health aide, the grief
    counselor, volunteers, specialized therapists,
    nutritionist, hospice physician, clergy
      The Hospice Alternative
• 2,500 hospice programs in the USA
• Three types of hospice care
  – A house where people go for visits and counseling
  – A separate ward or palliative care unit of a hospital,
    where patients are cared for by an interdisciplinary
    hospice team
  – Home care service with the goal of allowing patients
    to remain in their home environment as long as
    desired as possible (predominant in the USA)