End Of Life Workshop 2010 - Sacred Heart-St. Louis Parish by zhouwenjuan


									       Encountering the Person
           at End of Life

           Charles J. Bentz MD, FACP
Physicians for Compassionate Care Education Foundation
            Agenda for Today

•   Dignity of the Human Person
•   Understanding of Suffering
•   Late Life Depression
•   Dignity
    – Challenges to Dignity
    – Conserving Dignity
                What is a Person?
• Persons have personality         • Persons do things
• A person has a past              • Persons have behaviors
• A person has life                • Persons have unconscious
  experiences                        behaviors
• A person has family ties         • Every person has a body
• A person has a cultural          • Every one has a secret life
  background                       • Everyone has a perceived
• A person has roles                 future
• A person has a political         • Everyone has a
  point of view                      transcendental dimension

                Cassel EJ: The nature of suffering. NEJM. 1982; 306: 639-645
   Pain vs. Suffering
• Pain is different than suffering
• Many types of pain
  –   Physical Pain
  –   Social Pain
  –   Psychological Pain
  –   Spiritual Pain
  –   Existential Pain
What is Suffering?
• Suffering is a state of distress
• Associated with events that threaten us in some way
• Feeling that “what ought to be whole is split apart”
   –   Suffering is a subjective experience
   –   A sense of malfunction or dysfunction: body, mind, or spirit
   –   A sense of isolation (no one understands)
   –   A sense of separation (from others, from the transcendent)
   –   Always with a component of fear or uncertainty
Understanding Suffering

 • Suffering due pain is worse:
   – When people feel loss of control
   – When pain is overwhelming
   – When source of pain is unknown
   – When meaning of pain is dire
   – When duration of the pain is chronic
   – When belief that pain can’t be controlled
  Suffering: Clarifying the Context

• Patients often report unexpected suffering/pain
• People can suffer enormously at the distress of
  another (especially a loved one)
• If through great pain, someone comes closer to a
  goal, they don’t report suffering (childbirth)
• If pain is understood there is less suffering
   – Minor pain if uncertain, can cause great suffering
• Concern about future is a key feature of suffering
Suffering at End of Life:
 When there is a goal…

  • "How do you teach your children how to
    cope with life and death? I want to show
    them death is part of life, not to be feared,
    you can't hide from it, can't deny it."
  • "I'm completely at peace. I know I'm doing
    the right thing. I want to show the
    grandchildren strength in adversity. Why
    would you cut yourself short?"
                                   Seattle PI, October 2008
               End-of Life Issues:
•   Many Issues to discuss
    –   Artificial Administration Nutrition & Hydration
    –   Naso-gastric or direct gastric (PEG) tube feeding
    –   Artificial ventilator support (breathing machines)
    –   Advance Directives for end of life care
    –   Cardio-pulmonary resuscitation (DNR orders)
    –   Withdrawal of Life Support
    –   Terminal Sedation
    –   Physician-assisted suicide
         My involvement with
       Physician-Assisted Suicide
• 1994: 1st Passage of DWDA
• 1996: Became involved in PCCEF
   – Against measure 51 (Media Spokesperson)
• 1997: Chair: First palliative care conference
   – PCCEF: “Enhancing End of Life”
   – Five state conferences (1997 through 2001)
• 2002: Oregon Health Systems begin to step up
   – Annual State wide palliative care conferences
   – I figured I had “done my part”
               My Patient
• 2003: My patient has a sore on his arm
  – A 76 year old man, biopsy shows melanoma
  – He begins Chemotherapy and Radiation Therapy
  – His medical oncologist called and asked me to
    give the second opinion for his suicide
  – I declined to participate
  – She gave a lethal prescription
  – Two weeks later he was dead
  – My patient was “assisted”
              Soul Searching
• My own patient was dead
  – How did I feel about this?
     • About myself, my colleagues, my profession
  – Was appropriate medical care given?
     • On review of the records, my patient was depressed
  – What could I have done differently?
  – What would I do the next time someone asked
    me about assisted suicide?
  – What should Washington physician’s do now?
 Talking to my Colleagues about
   Physician Assisted Suicide:
• “Assisted suicide has been a good thing
  those of us who do palliative care”
• “I used to be against it, but now…”
• “I couldn’t stand to see her suffering, so I
  had to write a prescription for her”
• “I wouldn’t do it myself, but I refer”
• “I do this all the time”
    Why people choose assisted suicide
•   Experience of a tragic death
•   Witness of terrible suffering
•   Fear about suffering and pain
•   Concern about loss of control
•   Fear of being a burden
•   Fear of the loss of “Dignity”
•   Depression at end of life
•   Want to “go out on their own terms”
 For over 2400 years the medical
profession has withstood the allure
       of promoting death.
 Oregon’s “Death with Dignity” Act
Doctor states “less than 6 months to live”
Patient request lethal prescription
 • Second opinion (can be done over phone)
 • 2-week waiting period prior to filling
 • Doctor writes prescription
 • Reporting is voluntary
 • Record is falsified
Provides for doctor-ordered, doctor-prescribed,
          and doctor-directed suicide
     The Romanticized View
      of Oregon’s DWDA

News Media Applaud ‘Death with Dignity’
                       of Lovelle Svart
  What happens when someone
 asks you about Assisted Suicide
• Don’t avoid this conversation
  – If we respond by avoidance, seen as rejection
  – Failure to hear a “cry for help”
  – Need to find out “Why?”
• There may be coercion
• They may just be curious
• May indicate depression
Requests for assisted suicide should prompt
   us to look for depression and treat it
   •   Depressed mood
   •   Loss of interest or pleasure
   •   Change in sleep (insomnia or sleepiness)
   •   Feelings of guilt or worthlessness
   •   Lack of energy or fatigue
   •   Impairment of concentration or memory
   •   Change in appetite (up or down)
   •   Psychomotor agitation/retardation
   •   Recurrent thoughts of death or suicidal ideation
Recognizing Late-Life Depression
•   Old people are depressed
•   The nursing homes are depressing
•   Sick people should be depressed
•   Old people have somatic complaints
•   Gets lost in the medical issues
•   Don’t like to give “labels”
•   Apathy is not bothersome for caregivers
  Unique Features of Late-Life Depression
  Symptom     Adult Presentation   Geriatric Presentation
  Mood        Depressed            Weary, Hopeless, Angry
              Anhedonic            Anxious
              Suicidal thoughts    Thoughts of death
  Somatic     ↑↓ Sleep             ↑ Pain
              ↑↓ Appetite          Somatic symptoms
              ↑↓ Psychomotor       Many other diseases
              ↑↓ Pain
  Cognitive   ↓ Concentration      ↓ Attention
              Indecisiveness       ↓ Working memory
                                   ↓ Processing Speed
                                   ↓ Executive Function

Why is this important? Depression is treatable!
     What about
dig·ni·ty: (dĭg'nĭ-tē)
• The quality or state of being
  worthy of esteem or respect.
• Inherent nobility and worth:
   – Poise and self-respect.
   – Stateliness and formality in
     manner and appearance.
• The respect and honor
  associated with an important

American Heritage Dictionary
   There are Two Kinds of Dignity
• Attributed Dignity (personal dignity)
  – Perception of autonomy, independence, and
  – Factors that diminish attributed dignity
     •   Pain
     •   Bowel Dysfunction
     •   Dependency Issues
     •   Physical Appearance Changes
  – “Quality of Life”
                                       Chochinov, Lancet 1999
    Intrinsic Dignity
Intrinsic Dignity is the moral quality
inherent in human life which is
inalienable from “core being” or

We can acknowledge this Intrinsic
Dignity by taking a therapeutic
stance of unconditional positive
regard for those we care for.
              John Paul II on Dignity
   I feel the duty to reaffirm strongly that the intrinsic value and
      personal dignity of every human being do not change, no matter
      what the concrete circumstances of his or her life. A man, even if
      seriously ill or disabled in the exercise of his highest functions,
      is and always will be a man, and he will never become a
      "vegetable" or an "animal". Even our brothers and sisters who
      find themselves in the clinical condition of a "vegetative state"
      retain their human dignity in all its fullness. The loving gaze of
      God the Father continues to fall upon them, acknowledging them
      as his sons and daughters, especially in need of help.

  What about Extreme Suffering:
   Example of “Double Effect”
• End-stage lung cancer
   – Shortness of breath
   – Chest discomfort
   – Extreme anxiety
• Administer IV morphine
   –   Easier breathing, decreased pain
   –   Much less anxiety, now relaxed
   –   This is good medical care
   –   May hasten death
   –   Death was not the intention
• Advanced pain management = Good
• Many are confused about this
      Principle of Double Effect
• The act itself is morally good or at least
• The bad effect is not intended and if good
  effect can be achieved without it, it should be
  done so.
• The good effect must be produced directly by
  the action, not by the bad effect.
• The good effect must be sufficiently desirable
  to compensate for the bad.
       How to Preserve Dignity
• Need a “Dignity Conserving” approach
   – Hard to do in face of deteriorating health
   – Therapeutic stance: respect for whole person, feelings,
     accomplishments, and passions independent of illness
• Illness- Related Concerns
   – Level of Independence
   – Symptom Distress
• Dignity Conserving Repertoire
   – Dignity Conserving Perspectives and Practices
   – Social Dignity Inventory
   Dignity Issues      Dignity-related questions             Focus of Family Care

Physical distress     “How comfortable are you?”     Provide optimal comfort—vigilant
                      “Is there anything we can do   attention and assessment by loved ones
                          to make you more           and health care providers
                          comfortable?”              Don’t let symptoms get out of control
Psychological distress “How are you coping with      LISTEN empathetically
                         what is happening to        Be alert to psychological distress—
                         you?”                       depression, anxiety
                                                     Seek professional support, counseling
                                                     as needed.
Medical uncertainty   “Is there anything further     Establish open communication with
                          about your illness that    health care providers.
                          you would like to know?”   Expect and insist upon clear,
                      “Are you getting the           understandable information from
                          information you need in    providers.
                          words you understand?”     Collaborate with providers to develop
                                                     strategies to deal with future crises.
  Dignity Issues          Dignity-related              Focus of Family Care
Independence          “Has your illness made   Help the person participate in decision
                      you more dependent on    making to fullest extent possible within
                      others?”                 limitations of circumstances

Cognitive acuity      “Are you having any      Continually assess person’s cognitive
                      difficulty with your     function
                      thinking?”               Maintain open communication with
                                               health care provider re: cognition
                                               Discuss and educate yourself on side
                                               effects of medications, trying to minimize
                                               sedative and other effects.

Functional capacity   “How much are you        Help person perform activities of daily
                      able to do yourself?”    living safely and as independently as
                                               possible, enlisting professional guidance
                                               as needed
                                   PERSONAL DIGNITY
 Dignity Issues        Dignity-related questions                   Focus of Family Care
Continuity of Self   “Are there things about you    Acknowledge and take interest in those
                     that this disease does not     aspects of the person’s life that he/she most
                     affect?”                       values
                                                    Foster in yourself the attitude of looking at
Role preservation    “What things did you do        the person as one worthy of respect, esteem and
                     before you were sick that were affection
                     most important to you?”        Affirm the positive roles the person has and
                                                    continues to have among loved ones and others
Maintenance of       “What about yourself or your that are not dependent upon health or
Pride                life are you most proud of?”   functionality.
Hopefulness          “What is still possible?”         Encourage and enable the patient to participate
                                                       in meaningful activities
                                                       Explore the person’s sense of hope and how
                                                       person derives hope in situation
Autonomy             “How in control do you feel?” Involve patient in treatment, care and other
Legacy               “How do you want to be            Explore with person how he/she wants to be
                     remembered?”                      remembered
                                                       Explore optimal means of creating legacy,
                                                       such as Life Project (making video, audio,
                                                       writing letters)
                                                       Help assemble optimal persons and
                                                       opportunities to support legacy work
Erica’s Story
    Conserving Dignity Psychotherapy Protocol
• 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?
• 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?
• 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?
• What are your most important accomplishments, what do you feel most proud of?
• 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?
• What are your hopes and dreams for your loved ones?
• 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, other[s])?
• Are there words or perhaps even instructions that you would like to offer your
  family to help prepare them for the future?
• In creating this permanent record, are there that you would like included?
                             Chochinov HM, et al. Journal of Clinical Oncology. 23(24):5520-5, 2005 Aug 20.
                                       DIGNITY IN DAILY LIFE
  Dignity Issues            Dignity-related questions                           Focus of Family Care
Living in the moment   “Are there things that take your mind     Encourage the person to participate in normal routines
                       away from illness and offer you           or take comfort in momentary distractions (occasional
                       comfort?’                                 outings, exercise, music, etc…)
Maintaining normalcy   “Are there things you still enjoy doing
                       on a regular basis?”
Social Support         “Who are the people most important to     Enlist involvement of support network
                       you?”                                     Establish social routines that are optimal for person’s
                       “Who is your closest confidant?”          energy, interests and enjoyment
                       “Is there someone with whom you
                       would really like to talk?”
Privacy boundaries     “What about your privacy or your          Protect person’s modesty/physical privacy to fullest
                       personal care concerns you most?”         extent possible
                                                                 Insist that healthcare professionals and others respect
                                                                 person’s modest /privacy
                                                                 Ask permission before exposing person’s body or
                                                                 private affairs
Burden to others       “Do you worry about being a burden to     Encourage explicit discussion about these
                       others?”                                       concerns with those they fear they are burdening
                                                                 Assure person’s of the desire of others to help
                                                                 Establish optimal system of sharing the work among
                                                                 support system
Aftermath concerns     “What are your biggest concerns for       Encourage the settling of affairs, preparation of an
                       the people you leave behind?”             advanced directive, making a will, funeral plans.
                                                                 Explore person’s need/ability to communicate the
                                                                 following* I forgive you, Please forgive me.
                                                                     I love you,       Thank you.            Good-bye
Encountering the Person at End of Life
  •   Most important thing is to connect with this person
  •   First priority is relief of suffering and symptoms
  •   Screen for depression, treat if indicated
  •   Use the dignity conserving interventions
  •   Establish short term goals
  •   Explore options for end of life care
  •   Involve family, caregivers, and community
  •   Carefully assess burden / benefit of treatment
  •   Walk with them on this last part of their journey

           This is what dying with dignity should be…
      Finding a “Good Doctor”
• Everyone needs to talk to their doctor
   – Advanced planning, “heroics”, tube feedings, pain
• Compassion & Choices:
   – Ask about would you feel if I wanted “aid in dying”
   – Good Doctor says: I don’t know…
• Physicians for Compassionate Care:
   – Ask where do you stand on assisted suicide?
   – Good Doctor says: I will travel this road with you, I
     will aggressively treat any symptom, avoid heroics, get
     expert help and support if needed to do this and I will
     never intentionally harm you.
      You Can’t Trust the Brand
• My patient
  – 76 year old man
  – Malignant Melanoma
  – Referral to oncologist
  – Requested 2nd Opinion
  – Two weeks later my
    patient was dead
  – Catholic Hospital
  – Catholic Cancer Program
              Engaging Physicians
• Physicians for Compassionate Care (PCCEF)
  – Association of physicians, health professionals,
    associates, and friends
  – Dedicated to preserving the traditional relation of the
    physician and patient
  – Two Goals
     • Educate the health profession about assisted suicide
     • Promote the physician role to heal when possible, comfort
       always, and never intentionally harm.

    PCCEF ‘Take the Pledge’ Campaign
  Let your patients know
  where you stand on
  physician-assisted suicide
  Find out where all of your
  doctors stand on physician-
  assisted suicide
  Ask your doctor to            www.pccef.org
  take the pledge               www.take-the-pledge.com
Martha & Mary Home
•For those at end of life:
   •No one to care for them
   •No means to pay caregivers
•Existing Facilities:
   •Lack experience/expertise
   •Unable to provide ‘presence’
   •Difficult for family to visit
•Leaving a loved one in a facility.
•Martha & Mary Home:
   •A licensed adult foster care home
   •Around-the-clock care for up to five residents
   •Serving approximately 60 residents per year
   •Funded through Medicaid, private pay and donations
Contact Information

Charles J. Bentz MD, FACP

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