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Palliative and End of Life Care: Perspective of a Spouse, Family Member, and Physician

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Title: Palliative and End of Life Care: Perspective of a Spouse, Family Member, and Physician


1
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2
Optimizing Psychosocial Care The Perspectives of
the Palliative Care Social Worker and Physician
  • Palliative Care Update-2009
  • June 10, 2009
  • Beverly Thorpe, LCSW
  • David F. Giansiracusa, MD
  • Palliative Care Program
  • Maine Medical Center

3
Goals of Palliative Care
  • To prevent and relieve suffering and support
    the best possible quality of life for patients
    and their families facing life threatening
    illness regardless of the stage of disease or the
    need for other therapies.
  • Clinical Practice Guidelines for Quality
    Palliative Care,
  • National Consensus Project, 2004

4
Palliative Care and the Dying Process
  • 1950s- Concerns about improving care at the end
    of life
  • -Britain focused on medical neglect of
    dying people
  • -United States reaction to futile treatments
    in the face of suffering and inevitable death
  • Concepts of dignity and meaning emerged
  • Promotion of an active rather than passive
    approach to the dying
  • Interdependency of mental and physical distress
    supported the notion of suffering
  • Clark D. Between hope and acceptance the
    medicalization of dying.
  • BMJ. 2009324904-907.

5
Views of Death and Medical Progress
  • A sense of compromise with the idea of death as
    an inevitability
  • Death has become for some a biological accident-
    due to bad luck, indifference of good living
    habits, unfortunate genetics, or misfortune of
    dying before a cure for their fatal disease is
    found.
  • Callahan D. Death, mourning, and medical
    progress. Perspectives in Biology Medicine,
    Winter 200952(1)103-115.

6
  • Helping with dying is the opposite of most
    helping. Usually we help people move toward
    fuller engagement of life. In dying we help
    people disengage from life.
  • E.M. Pattison
  • The Experience of Dying

7
General Principles in Working with the Dying
Person for the Appropriate Death
  • Achieve integration of dying into the persons
    life-style
  • Assist the dying person to view his or her own
    death and live out the dying consistent with
    his/her own
  • -coping mechanisms
  • -definition of meaning of death
  • -life context
  • Weisman AD.The Realization of Death. 1974 New
    York, Aronson.

8
Criteria of an Appropriate Death
  • Person able to
  • Face and resolve initial crisis of acute anxiety
    without disintegration
  • Reconcile the reality of life as wanted it to be
  • Preserve or restore the continuity of important
    relationships during living and gradually achieve
    separation
  • Experience basic instincts, wishes, fantasies
    that lead to gradual withdrawal and final
    acceptance of death.
  • Weisman AD. 1974

9
Suffering is experienced by persons (and
families), not bodies. Cassel, E. (1982). The
nature of suffering and the goals of medicine,
NEJM, 306639-45.
10
  • Suffering The threat to ones integrity as a
    person.
  • Eric Cassell

11
  • The most essential thing in life is to develop
    an unafraid, heartfelt, communication with
    others, and it is never more important than with
    a dying person.
  • __Sogyal Rinpoche, author of The Tibetan Book of
    Living and Dying

12
  • When we listen, we offer, with our attention,
    an opportunity for wholeness. Our listening
    creates sanctuary for the homeless parts within
    the other person, that which has been denied,
    unloved, devalued, by themselves and by
    others..that which is hidden.
  • __Rachel Naomi Remen, Kitchen Table Wisdom

13
Psychological and Spiritual Assessment
  • What strengths and vulnerabilities do patients
    and their families bring to the illness?
  • What meaning do patients (and families) ascribe
    to their illness?
  • Block SD. JAMA 2001 85(22)2898-2905

14
Questions to Ask
  • Where is your suffering?
  • Are you suffering, not counting the pain?
  • If I could take the pain away, would you be all
    right?
  • Eric Cassell

15
  • Meaning of Illness How have you made sense of
    why this is happening to you? What do you
    think is ahead?
  • Coping Style How have you coped with hard
    times in the past? What have been major
    challenges you have confronted in your life?
  • Social Support Who are the important people in
    your life now? How are they coping with your
    illness?
  • Stressors What is most difficult for you, for
    your family? What is most stressful? Do you
    have concerns/worries/fears about pain or other
    physical suffering? How is your family
    coping?
  • __modified from Block SD. JAMA 2001
    285(22)2898-2905

16
Mobilizing Patients Strengths and Inner Resources
  • What are some of the ways you have found
    yourself growing or changing, or hoped that you
    could grow or change in this last phase of life?
  • Block SD. JAMA 2001

17
Social Relationships and Healing
  • Are there important relationships in your life
    that need healing or strengthening?
  • Do the important people in your life know what
    they mean to you?
  • Are there relationships in which you feel
    something has been left unsaid?
  • Block SD.JAMA 2001

18
  • The bitterest tears shed over graves are
    for words left unsaid and deeds left undone.
  • Harriet Beecher Stowe

19
Helping the Dying Person Address Fears
  • Fear of the unknown
  • Fear of loneliness
  • Fear of sorrow
  • Fear of loss of family and friends
  • Fear of loss of body
  • Fear of suffering and pain
  • Fear of loss of identity
  • Fear of regression
  • - Pattison EM, 1977

20
Help the Patient Confront Fears
  • Have you lost family members or other
    loved-oneshow was that for you?
  • How are you doing within yourself? What, if
    anything, are you or your family worried about or
    afraid of?
  • What is hardest for you?
  • What gives you a sense of joy?
  • We will be with you to the very end to care for
    you and your family.

21
  • Man is not destroyed
  • by suffering alone,
  • but by suffering without meaning.
  • Viktor Frankl, Mans Search For Meaning

22
Meaning
  • Meaning involves the conviction that one is
    fulfilling a unique role and purpose in a life
    that is a gift a life that comes with a sense of
    peace, contentment, or even transcendence through
    connectedness with something greater than ones
    self.
  • __Viktor Frankl

23
Existential/Spiritual Distress
  • Burdened by sins
  • Unresolved guilt
  • Loss of hope and meaning
  • Non-acceptance of diagnosis/condition
  • Terror of afterlife

24
Our Ultimate Quest is for Meaning
  • People and things loved (animals, places, ideas,
    music, books)
  • Things believed in
  • Things created or accomplished
  • Things left as a legacy
  • Suffering itself
  • Viktor Frankl, Mans Search for Meaning

25
How to Help a Person Repair The Sense of
Broken-ness
  • Learn who this unique person is
  • Empathically experience her/his sense of being
    shattered
  • Ned H. Cassem, SJ, MD Consultation
    Psychiatrist, MGH

26
Dimensions Defining A Persons Uniqueness
  • Family-Primary, Extended, Close Friends
  • Culture, Origins
  • Ethnicity, Race, Roots
  • Faith, Religion, Values, Role Models
  • Education, Cumulative Experiences
  • Socioeconomic Status

27
Examining A Patients Philosophy of Life, What
Gives Meaning
  • Looking back, what have been the best times, the
    worse times?
  • Are there things you are particularly proud of?
  • Do you have any particular values, code,
    philosophy by which you live?
  • What are your goals, your dreams?
  • How may you best prepare your loved-ones to live
    without you?
  • Occupation
  • __Ned Cassem, M.D.

28
  • What is most important
  • to you now?

29
Communicating with Patient and Family Help Move
to Acceptance
  • Facilitate talking about death
  • E.g. planning a memorial service
  • Expressing feelings with loved ones
  • Forgive me. I forgive you. I love
    you.
  • Thank you. Good-bye. (Byock)
  • Preparing others and leaving a legacy
  • -audio/videotapes, writings, drawings
  • Recognizing the need for others to let go and
    getting permission to die
  • you. Good-bye

30
Most patients, given space, will draw on their
own strengths and resources and reach a
resolution of their inner pain. Cicely Saunders
31
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32
Is Death Really That Fearful? An Overview
  • Phases of the dying process
  • Coping
  • Dualities
  • Preparing
  • How do you assess when its going well?
  • What interventions may help if its going badly?

33
Fear of Death
  • Our own death is indeed quite unimaginable,
    and whenever we make the attempt to imagine it we
    .really survive as spectators.At bottom nobody
    believes in his own death, or to put the same
    thing in a different way, in the unconscious
    every one of us is convinced of his own
    immortality.
  • Freud 1953

34
  • The idea of death, the fear of it, haunts the
    human animal like nothing else it is a
    mainspring of human activity - designed largely
    to avoid the fatality of death, to overcome it by
    denying in some way that it is the final destiny
    of man.
  • Earnest Becker

35
Death anxiety
  • I was all but paralyzed by what I would call
    intense anxiety. When the diagnosis was
    confirmed, the anxiety took off its mask and
    revealed itself to be abject terror, a fear I had
    not felt before and which has haunted me everyday
    since, appearing now and again despite my efforts
    to submerge it in everyday routines

36
  • .. It was a dread for which no words were
    adequate. I now feel sure that whatever it was
    in me that changed did so through that experience
    of fear, which came from a force not known
    before.
  • Fear, death and sociology, 2002
  • Ian Craib, Dept. of Sociology, University of
    Essex, UK

37
Terror Management Theory
  • Ways people "manage" the potential terror
    associated with death Dual anxiety buffers
  • -Utilizing an external cultural worldview
    beliefs about the nature of reality that provide
    a sense that the universe is meaningful, orderly,
    and stable and that provisions for immortality-
  • - Involving internal self-esteem the
    perception that one is living up to the standards
    of value associated with the social role
    inhabited by individuals in the context of their
    culture, and hence rendering them eligible for
    safety and security in this life and immortality
    thereafter

38
  • Dying is not a pathological problem to be
    treated, but we must use phase appropriate
    responses..
  • Pattison EM, 1977

39
Living-Dying Intervals
  • Acute Crisis Phase
  • Chronic Living Dying Phase
  • Terminal Phase
  • Pattison EM, 1977

40
Acute Crisis Phase
Knowledge of Death
41
Autonomic Arousal Model
Signs of Hyperarousal Overwhelm, panic,
impulsivity, hypervigilence, defensiveness, feel
unsafe, reactive, racing thoughts
Optimal Arousal Zone
Signs of Hypoarousal Numb. dead, passive, no
feelings, disconnected, shut down, not there
Ogden and Minton, Sensorimotor Psychotherapy
42
Acute Crisis Phase
  • Therapeutic Goals-
  • Assess and mobilize resources and coping skills
    to avoid disintegration
  • Improve sense of security and control
  • Accept denial as an adaptive coping mechanism for
    the patient to forestall fear of death at this
    time.

43
Why does relief of whole body pain matter?
  • Lessening the intensity of an individuals
    distress, can help to create a more secure
    environment enabling the individual to come out
    of isolation into relationship with others and
    with the deeper levels of his or her own
    experience.
  • Michael Kearney, Mortally Wounded

44
Peak Anxiety
Chronic Living Dying Phase
Integrated Living - Dying
Disintegrated Living - Dying
45
Chronic Living-Dying Phase
  • A time for
  • Maintaining, completing and resolving
    relationships
  • Coping with everyday living
  • Making decisions that allow a sense of control
  • Grieving
  • Resolving regrets
  • Maintaining identity and finding meaning
  • Creating legacies

46
  • As people have typically coped throughout their
    lives, so they will continue in the same coping
    style through their dying.
  • E M Pattison

47
Dignity Therapy

48
Dignity Psychotherapy Question Protocol
  1. Tell me a little about your life history
    particularly the parts that you either remember
    most or think are the most important? When did
    you feel most alive?
  2. Are there specific things that you would want
    your family to know about you, and are there
    particular things you would want them to
    remember?
  3. What are the most important roles you have played
    in life (family roles, vocational roles,
    community-service roles, etc)? Why were they so
    important to you, and what do you think you
    accomplished in those roles?
  4. What are your most important accomplishments, and
    what do you feel most proud of?

49
  • 5. Are there particular things that you feel
    still need to be said to your loved ones or
    things that you would want to take the time to
    say once again?
  • 6. What are your hopes and dreams for your loved
    ones?
  • 7. What have you learned about life that you
    would want to pass along to others? What advice
    or words of guidance would you wish to pass along
    to your (son, daughter, husband, wife, parents,
    others)?
  • 8. Are there words or perhaps even instructions
    that you would like to offer your family to help
    prepare them for the future?
  • 9. In creating this permanent record, are there
    other things that you would like included?

50
Outcomes of Dignity Therapy
  • Beneficial effects were obtained irrespective of
    whether patients indicated initial significant
    psychosocial/existential distress
  • satisfaction (93),
  • helpfulness (91),
  • sense of dignity (76),
  • purpose (68)
  • meaning (67)
  • It is also interesting to note that 81 of
    patients felt that dignity therapy had helped, or
    would be of help to, their families and that this
    perception was related to a heightened sense of
    purpose and meaning along with a diminished sense
    of suffering and heightened will to live.
  • Journal of Clinical Oncology, 2005 ,Chochinov ,
    et al.

51
  • Our task is not to eliminate denial and attain
    acceptance, but to respond to a flowing process
    of both denial and acceptance in ourselves and
    the patient.
  • E. M. Pattison

52
Denial May Be A Double-Edged Sword During The
Chronic Living-Dying Phase
  • Denial may be adaptive or mal-adaptive.
  • Denial is most upsetting for family and staff
    when the patient
  • does not accept the possibility of death
  • Is focusing on unrealistic goals
  • Is failing to make legal and financial plans
  • Susan Block

53
Preparing family for death and bereavement
  • Duration of illness
  • Advanced Care Planning
  • Previous experiences with caregiving and death
  • Medical sophistication

54
Communication The Beginning of the Integrative
Process
  • Information (cognitive)
  • Need to mentally or emotionally prepare
    (affectively process)
  • Complete important tasks (behavioral)
  • Hebert, Schulz, Copeland and Arnold
  • Pain and Symptom Management, 2009

55
Important Questions That Caregivers May Neglect
To Ask
  • What does dying look like?
  • Funeral arrangements
  • Meaning of illness
  • Family disagreements
  • Afterlife
  • Schultz and Copland
  • Palliative Medicine, 2008

56
  • To sense our own non-being is perhaps vital,
    but we cannot for long look directly at it. It
    is like the sun. We can only look directly at
    the sun for a few fleeting blinding moments at
    one time. For the most part, we look at the sun
    indirectly. In the same fashion we look at our
    own non being indirectly.
  • E.M. Pattison

57
Grieving A Dual Process Model
  • Loss Oriented
  • Emotional energy focused on separation, layers of
    loss, and events that trigger intense feelings.
  • Denial/avoidance of need to make life changes
  • Respite from loss
  • Stroebe M. and Schut H
  • Utrecht University of Netherlands (1999)
  • Restoration Oriented
  • Attending to life changes
  • Doing new things
  • Distracting self from grief or denial/avoidance
    of grief
  • Creating new roles and relationships
  • Respite from moving forward with life

58
Surface and Depth Work
  • The way care is given can reach the most hidden
    places.
  • Cicely Saunders
  • Connecting with meaningful things done
    meaningfully.
  • The ordinary aspects of life that have in the
    past brought us a sense of depth or richness.
  • Michael Kearney MD
  • Mortally Wounded

59
Terminal Phase
Terminal Phase
Integrated Living - Dying
Point of Death
60
Quality Care at End of Life Patients Perspective
  • Comfort
  • Sense of control / dignity
  • Relieving burden on loved ones
  • Strengthening and completing relationships with
    significant others
  • Avoiding prolongation of dying process
  • __Singer, Martin, Kelner (1999). Quality end
    of life care Patients perspectives, JAMA,
    28(2), 163-168.
  • __Steinhauser, KE, et al (2000). Factors
    considered important at the end of life by
    patients, families, physicians and other care
    providers. JAMA, 284(19), 2476-2483.

61
Psycho-Spiritual Wellbeing An Integrative A
study of 43 Research Projects
  • Enabling
  • Prognostic awareness
  • Family and social support
  • Autonomy
  • Hope meaning in life
  • Disabling
  • Emotional distress
  • Anxiety
  • Hopelessness
  • Helplessness
  • Fear of death

Lin and. Bauer-Wu, Journal of Advanced Nursing,
2003
62
Actively Dying
  • Task is to help or allow the person who is dying
    to withdraw from life with dignity and
    individuality.
  • Adaptive process
  • Isolating
  • Withdrawing
  • Increasing detachment
  • Coming to terms internally with death

63
Letting Go before Death
  • Recognition that everything has been carried out
  • Shift in thinking to allow natural death
  • Peaceful death and acceptance by loved ones
  • Lowey, Journal of Advanced Nursing, 2008
  • PubMed analysis, 1995-2007

64
A Dynamic , Evolving Process of Struggle and
Integration
65
Trust
Comfort
Completion
Grieving
Dissolving
Denial
Disbelief
Happiness
Pain
False Hope
Panic
Acceptance
Gathering together
Hope
Fear
Ambivalence
Anger
Planning
Making decisions
Hanging on
Loving
Shock
Avoidance
Denial
Pain
Loosing
Separating
Loving
Controlling
Doubting
Letting Go
Connection
Trying to be normal
Comfort
Making meaning of life
Making Meaning of Death
66
Suffering is experienced by the whole person, not
just the body
  • Paradox
  • May be free of symptoms, but suffer terribly

May have significant pain or other symptoms, but
no suffering Balfour Mount, MD
67
Relationship with a deeper part of the self
  • I discovered that there was an energy inside of
    me that was not separate from me, but which was a
    different aspect of my life and maybe one that
    was able to be truer than the life I had lived on
    the surface. I had this feeling that I could
    forgive myself for whatever I had done to make
    my life what I wanted.

68
Healing Connections
Others
Self
Others
69
Improvement in QOL in spite of impending death
  • Healing connections
  • Enhancing meaning
  • Security

70
All people, patients, loved-ones, health care
providers, involved in dying, experience high
degrees of stress
  • Experience
  • Anguish
  • Pain
  • Despair
  • Anger
  • Fear
  • Use defenses
  • Projection
  • Denial
  • Passive aggressiveness
  • Acting out
  • E. M. Pattison
  • The Experience of Dying

71
Helping with Dying
  • In our anxiety to accomplish something, to do
    something about dying, to feel we are valuable,
    whatever, I find a zealousness to do things. But
    this may be for our own benefit, not for the
    dying. To comfort is to share. To share is the
    willingness to be, without having to do.
  • E. M. Pattison, The Experience of Dying

72
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