Becoming an Orthodox Presence for the Dying

1
Becoming an Orthodox Presence for the Dying

• Daniel B. Hinshaw, M.D.
• Palliative Care Program
• VA Ann Arbor Healthcare System
• Department of Surgery
• University of Michigan

2
A brother asked a certain old man,
saying, There be two brothers, and one of them
is quiet in his cell, and prolongs his fast for
six days, and lays much travail on himself but
the other tends the sick. Whose work is more
acceptable to God? And the old man answered,
If that brother who carries his fast for six
days were to hang himself up by the nostrils, he
could not equal the other, who does service to
the sick. From The Desert Fathers (p.124)
trans. by Helen Waddell
3
Objectives

• Define the relationship between spirituality and
  religion
• Review patients spiritual needs and expectations
  of their caregivers in the therapeutic encounter
• Examine the challenges to real hearing and
  listening and the importance of two concepts
  hesychia and kenosis in this process
• Identify the central role of empathy in listening
  to/hearing the sick
• Consider the possibility of transcending
  listening and hearing in the therapeutic
  encounter to be truly present

4
C.R. is a female patient in her early 70s who
presents with a locally advanced unresectable
colon cancer which has replaced the lower half of
her abdominal wall with a large, stinking,
fungating mass. Nursing staff have noted that
she rarely requires pain medication. On further
inquiry, it is found that she addresses her pain
with continual prayer. Be still, and know
that I am God. (Psalm 4610)
5
Spirituality

• that which allows a person to experience
  transcendent meaning in life. This is often
  expressed as a relationship with God, but it can
  also be about nature, art, music, family, or
  community - whatever beliefs and values give a
  person a sense of meaning and purpose in life.
• (Puchalski, C and Romer, AL J. Pall. Med.
  3129-137, 2000)

6
Religion and Spiritual Care

• Spirituality is often grounded in a specific
  religious faith.
• Religion is a source of meaning and framework in
  which to understand the great existential
  questions of suffering and death.
• Religious rituals actualize belief/doctrine and
  provide tangible comfort and meaning.
• Chaplains and caregivers often are intermediaries
  in assisting patients to find appropriate
  religious support.
• Ask for specific religious support earlier rather
  than later.

7
Factors Considered Important at the End of Life
(Steinhauser, KE, et al. JAMA 284 2476-2482,
2000)

• Patients and families rank ordered 9
  pre-specified attributes of the end-of-life
  experience.
• Freedom from pain and Being at peace with God
  were ranked as most important (and were
  statistically equivalent).

8
Spiritual Needs of the Dying

• Meaning
• Why am I suffering
• Have you thought about what all this
  means?
• Value
• Do I still have value even though I can no
  longer work?
• Are you able to hold onto a sense of your own
  dignity and purpose?
• Relationship
• Who have I wronged? Who has wronged me?
• Is there anyone to whom you need to say I
  love you or Im sorry?
• Sulmasy, DP. JAMA 2006
  2961385-1392

9
Spiritual Experiences as Death Approaches

• Near the transition to active dying, cognitive
  changes occur - often dismissed (or treated) as
  delirium by physician.
• Dream life changes - vivid and often symbolic
  dreams may occur (e.g., taking a journey,
  finishing a building project). The dying patient
  may be uncertain if it occurred while asleep or
  awake.
• Not infrequently the dying person will be found
  speaking to unseen presences - often deceased
  relatives.
• Experiences are usually comforting (although they
  may be perplexing to loved ones and caregivers).

10
Interventions to Address Spiritual Pain

• Psychotherapy
• Pastoral (chaplains)
• Religious
• Complementary therapy
• Caregiver-initiated (e.g., presence)
• Medical (e.g., palliative sedation)

11
Yea, Master, Lord our God, hearken unto me a
sinner and thine unworthy servant in this hour,
and loose thy servant, N., from this intolerable
sickness and the bitter impotency which holdeth
him, and give him rest where the souls of the
righteous dwell

• Prayer for one who has suffered long from Prayers
  for the Dying in An Abridged Euchologion ed. by
  David F. Abramtsov

12
Most Important Behaviors and Attitudes of
Physicians Caring for Women Living with Breast
Cancer

• Communication based on active listening
• Awareness of/respect for the womans depth of
  knowledge about her illness
• Honesty
• Partnership
• Interest in the patient as a person
• Use of touch to communicate
• Harris, SR and Templeton, E, Breast J. 7 (6)
  444-449, 2001

13
Conversations with the Dying

• Difficult to contain within a short clinic visit
  or single ward encounter
• Content/depth depends on level of trust
• Trust depends on a relationship, often built over
  time
• May often involve questions that do not have easy
  answers
• Puchalski, CM Health Progress, July-August,
  2004, vol. 85 (4)

14
Partnership and Spirituality

• Healing can not occur in a vacuum.
• Partnership implies that the journey is one of
  shared experience where two people work together
  toward a resolution rather than one in which the
  expert doles out advice, leaving the patient to
  sort through the problems alone.
• Puchalski, CM Health Progress, July-August,
  2004, vol. 85 (4)

15
Hearing and Listening

• Hear perceive by the ear or listen to give
  or pay attention to (often in a favorable light)
• Listen to give attention with the ear attend
  closely for the purpose of hearing give ear
  with a secondary meaning pay attention heed
  obey but also wait attentively for a sound
• Websters New Universal Unabridged
  Dictionary, 2003, Barnes Noble Publishing, Inc.

16
How can we listen with all the noise?

• Finding stillness or silence in the therapeutic
  encounter
• Hesychia

17
The Lord will fight for you, and you have
only to be still.Exodus 1414
18
Hesychia and Kenosis

• A life-threatening illness can focus ones
  attention like nothing else.
• A terminal illness and the process of dying are
  each persons kenosis.
• The kenosis of the dying (and of course we are
  all dying!) is a stripping away of the noise so
  that real silence - hesychia can be experienced.
• This kenosis is the foundation for true hearing
  and listening.

19
Hesychia and ListeningElijah at Mt Horeb

• They seek my life to take it away. And He
  said, Go forth, and stand upon the mount before
  the Lord. And behold, the Lord passed by, and a
  great and strong wind rent the mountains, and
  broke in pieces the rocks before the Lord, but
  the Lord was not in the wind and after the wind
  an earthquake, but the Lord was not in the
  earthquake and after the earthquake a fire, but
  the Lord was not in the fire and after the fire
  a still small voice. I Kings
  1910 ff (RSV)

20
Hesychia and ListeningMartha and Mary

• He entered a village and a woman named
  Martha received Him into her house. And she had a
  sister called Mary, who sat at the Lords feet
  and listened to His teaching. But Martha was
  distracted with much serving and she went to Him
  and said, Lord, do you not care that my sister
  has left me to serve alone? Tell her then to help
  me. But the Lord answered her, Martha, Martha,
  you are anxious and troubled about many things
  one thing is needful. Mary has chosen the good
  portion, which shall not be taken away from her.
  Luke 10 38 ff (RSV)

21
Hesychia and Listening

• Stillness is a necessary precursor for real
  hearing and listening, as much for the caregiver
  as for the patient.

22
Kenosis and Empathy
23
Empathy

• The intellectual identification with or
  vicarious experiencing of the feelings, thoughts,
  or attitudes of another
• Websters New Universal Unabridged Dictionary,
  2003, Barnes Noble Publishing, Inc.
• Original root from Greek word pascho
  suffer entering into the suffering of another

24
Suffering in Traditional Christianity

• The angels at the tomb identified the risen
  Lord as the Crucified Oneand the French
  Catholic philosopher Pascal echoed this message
  when he declared, Christ is in agony until the
  end of the world. The Risen Lord remains forever
  the Crucified One. Those who are united to him,
  then, are united as well to his once-for-all
  crucifixion, whose meaning and power endure
  throughout the ages Suffering, therefore, can
  become an effective means for creating a deep and
  intimate communion with Christ and with the
  afflicted members of his Body.
• Breck, J, The Sacred Gift of Life,
  p. 221

25
For one to be ill is a divine visitation.
Illness is the greatest gift from God. The only
thing that man can give to God is pain.From An
Athonite Gerontikon, p. 430
26
Process of EmpathyEdith Stein

• Three levels
• First level active listening
  experiencing the other person as an object
  (trying to put ourselves in the others place)
• Second level identification merging
  experiencing the others state of mind as ones
  own (a moment of grace)
• Third level sympathy having now
  recovered ones sense of self and standing side
  by side with the other
• Maatta, SM, Nurs. Philos. 7 3-10, 2006

27
Barriers to Empathy...

• To have pain is to have certainty. The patient
  has this certainty - the caregiver does not.
  Caregivers must overcome their tendency to doubt
  the patient.
• Caregivers should listen to their patients
  complaints of pain (their suffering) not to
  explain but to understand, not to diagnose but to
  witness and help.
• (Schweizer, H To Give Suffering a Language.
  Lit. and Med. 14 210-221, 1995)

28
...Barriers to Empathy

• Sometimes patients (and co-workers!) are not
  particularly likeable, indeed they may be abusive
  and threatening to the caregiver.
• Finding a common history or shared experience can
  serve as a bridge in developing a relationship of
  caring for the difficult patient (co-worker).
• (Liaschenko, J J Pall. Care 10 83-89,
  1994)

29
A Foundation for Empathy

• He whom we look down upon, whom we cannot
  bear to see, the very sight of whom causes us to
  vomit, is the same as we, formed with us from the
  selfsame clay, compacted of the same elements.
  Wherever he suffers we also can suffer.
• (St. Jerome - quoted in Risse, GB Mending
  Bodies, Saving Souls A History of Hospitals.
  Oxford University Press, 1999)

30
A Biological Basis for Empathy(Singer, T, et
al. Science 3031157-1162, 2004)

• Characteristic patterns of activation in the
  brain can be visualized using functional MRI when
  a subject experiences a painful stimulus.
• The Pain Matrix is a collection of anatomic sites
  in the brain that is activated during the
  experience of pain.

31
A Biological Basis for Empathy

• The anatomic sites making up the Pain Matrix
  account for both the sensory and affective
  (emotional) component of the pain experience.
• The affective components of the Pain Matrix are
  primarily activated when empathy is aroused in a
  person.

32
Dealing with Suffering as Caregivers
33
A single death is a tragedy, millions are only a
statistic!

• Joseph Stalin

34
a man stands perplexed at the sight of human
sin, and wonders whether to combat it by force or
by humble love. Always decide I will combat it
by humble love. If you resolve on that once for
all, you can conquer the whole world. Loving
humility is a terrible force - it is the
strongest of all things, and there is nothing
else like it.

• Starets Zosima
• Brothers Karamazov (Dostoevsky)

35
Healing for the Caregiver

• Breaking down ones denial of suffering and death
• Overcoming ones fear and sense of failure in the
  face of intense suffering and death
• Developing and experiencing empathy

36
Co-sufferingCan we help carry the cross of
another?

• Come Mr. Frodo! he cried. I cant carry it for
  you, but I can carry you and it as well
• (Sam Gamgee quoted in Tolkien, J.R.R., The Return
  of the King, p.919, Houghton Mifflin Co., Boston,
  1994)

37
St. Maria of Paris and Ravensbruck

• Our neighbors cross should be a sword that
  pierces our soul. To co-participate, co-feel,
  co-suffer with our neighbors destiny this is
  love.

38
Listening Beyond Listening
39
Listening and Presence

• Giving ones full attention to another person
• Subordinating ones own ego completely to be
  fully open to the other
• Being fully present on all levels physically,
  emotionally, intellectually, and spiritually
• Transcending the limits of the space/time
  continuum

40
Creating a Therapeutic Environment...

• A therapeutic environment is more than
  architecture.
• A therapeutic environment exists to the extent
  that a therapeutic organization is present.
• How do all the caregivers interact with one
  another and with the patient?
• Is there a consistent expression of loving
  compassion for the patient from the entire team?
• Can the team members empathize with each other as
  well as with their patients?

41
Creating a Therapeutic Environment

• Can the team be organized so that two people
  always come when its a question of a procedure
  that may be painful? One simply to offer her
  presence, her warmth, and attention, while the
  other, just as attentively, does what has to be
  done with all possible competence. When three
  people get together like this, each wishing to
  draw on the presence of the other two in order to
  face a difficult moment, a composite being with
  truly miraculous powers is brought into
  existence.
• (De Hennezel, Marie, Intimate Death, How the
  Dying Teach Us How to Live, p. 50, translated by
  Carol B. Janeway, Alfred A. Knopf, New York, NY,
  1997)

42
Kenosis in the Therapeutic Encounter

• You are missing something, as well as the
  patient missing something, unless you come not
  merely in a professional role but in a role of
  one human being meeting another.
• Dame Cicely Saunders as quoted in Egnew,
  TR. The Meaning of Healing Transcending
  Suffering. Ann Fam Med 2005 3255-262

43
The Reciprocal Character of Healing in the
Therapeutic Encounter

• For healing to occur, it may only be necessary to
  experience or witness (be present for) the
  suffering of another or for the suffering one to
  experience the compassion and love of the
  caregiver.
• The healer is the patient and the patient is the
  healer.
• Christ is all in all. Colossians 311

44
Healing in Confession

• A 56 year old combat veteran of the Vietnam
  War presents with severe pain, cachexia, and
  debility from widely metastatic urothelial
  cancer. During a bedside interview, he confesses
  to his direct involvement in a number of
  atrocities against civilians during his military
  service.

45
Healing in Confession

• During leave from active duty he has an
  altercation at home and pushes his mother. His
  father kicks him out of the house and tells him
  he never wants to see him again. He returns to
  active duty and a month later he is informed that
  his father has died suddenly of a heart attack.

46
Shut Up and Listen!

• Listening is one of the greatest spiritual
  gifts a chaplain can give a suffering patient.
  
  
• (Sr. Sharon Burns, The Spirituality of Dying.
  Pastoral Cares Holistic Approach Is Crucial in
  Hospice, Health Prog 7248-54, 1991)

47
Being fully present is a form of listening.

• A Boy and His Blanket

48
Silence is always beautiful, and a silent person
is always more beautiful than one who talks.

• The Adolescent
• Fyodor Dostoevsky

49
Who are called to care for those who suffer?
50
The Last Judgment

• I was sick and you visited Me Matt. 25 36
• None of the commonly used Greek words for
  healing were used (i.e., iaomai, therapeuo,
  sozo).
• Another word, episkeptomai visit, care for
  was used.

51
Therapeuontes en ChristoBut when
the briefest breathing-space had been granted us
and them, there descended upon us this disease, a
thing that is to them more fearful than any other
object of fear, more cruel than any calamityYet
to us it was not so, but, no less than the other
misfortunes, a source of discipline and
testingMostof our brethren in their exceeding
love and affection for the brotherhood were
unsparing of themselvesvisiting the sick without
a thought as to the danger, assiduously
ministering to them, tending them in
Christdrawing upon themselves the sickness from
their neighbors, and willingly taking over their
pains. And many, when they had cared for and
restored to health others, died themselves, thus
transferring their death to themselves Bishop
Dionysius of Alexandria (mid 3rd century) as
quoted in Eusebius Ecclesiatical History (vol.
II) Loeb Classical Library, 1994
52
The Basileias of St. Basil the Great

• Often referred to as the first hospital modeled
  on monastic hospitals of the 4th century in
  Egypt, but more than a hospital in the modern
  sense
• Facilities included a hospital for the sick, a
  hospice for lepers, a home for the elderly, an
  orphanage, and a hostel for travelers and the
  homeless

53
St. Basil and Lepers

• Physicians in antiquity would not treat
  hopeless, incurable cases for fear of
  diminishing ones professional reputation
• Concern for lepers in the Basileias was a radical
  departure from prior precedent and his most
  amazing achievement according to St. Gregory of
  Nazianzus
• St. Basil personally cared for lepers in his
  keluphokomeion
• Crislip, AT, From Monastery to Hospital
  Christian Monasticism the Transformation of
  Health Care in Late Antiquity, University of
  Michigan Press, 2005

54
St. Basil and Lepers

• He did not therefore disdain to honor with his
  lips this disease leprosy, noble and of noble
  ancestry and brilliant reputation though he was,
  but saluted them as brethren Basils care was
  forthe imitation of Christ, by cleansing
  leprosy, not in word, but in deed.
• St. Gregory of Nazianzus Or. 43.63
• The terminally ill are the lepers of today.

55
There is no meeting more meaningful than that
which takes place in the sharing of suffering,
unless it be in the sharing of death itself when
we touch immortality. From The Communion of
Love by Fr Matthew the Poor
56
A Vocation for Orthodox Christians?A
new form of philanthropic organization, even a
new expression of Christian vocation, seems
required today, if the Church is to provide a
genuine alternative to physician-assisted
suicide. True aid-in-dying could be furnished
by specially trained Christian lay persons or
medical professionalsOrthodox hospice
programsshould be ranked as high priorities
among the many pastoral tasks the Church is
called to assume Fr John Breck, The Sacred
Gift of Life - Orthodox Christianity and
Bioethics, p.239, SVS Press, Crestwood, NY 1998
57
Did not our hearts burn within us?Luke 2432

• This is the experience of being with Him in the
  person of the dying!

58
Appendix

• St. Elizabeths Ministry

59
An Orthodox Christian Home for the Dying

• Create a supportive home-like environment for the
  dying who have no home (through poverty or lack
  of support systems) as an expression of Christian
  philanthropia.
• Follow the example of the unmercenary saints - do
  not charge for services.
• Place it within the context of a community of
  prayer (e.g., adjacent to/part of a monastery or
  a parish).
• Hospice organizations to provide hospice services
  - staff/volunteers to provide/create loving
  home environment for the dying who live there
  until they die.

60
St. Elizabeths Ministry St. Elias Orthodox
Church, Sylvania, Ohio

• Planning meetings over 2 years
• Local needs assessment discussions with
  discharge planners at local hospitals and VA
  homeless coordinator
• Internal parish needs assessment and exploring
  interest in philanthropic projects parish
  spiritual introspection
• Modeling on other operational faith-based
  philanthropic projects (e.g., Malachi House,
  Mother Teresa home, Servant Center)
• Identifying potential sources of support
  private philanthropy, federal (VA grant per
  diem program), community partners (including
  consortium of local Orthodox parishes)
• Where to begin?

61
Getting Our Feet Wet Palliative Day Care
Respite for Caregivers

• Commonly provided in UK by NHS in conjunction
  with palliative care/hospice
• Not Funded by Medicare not available in the US
• US Adult Day Care programs primarily provide
  respite for caregivers of demented individuals
  and/or frail elders have minimal to no
  experience with hospice

62
Palliative Day Care

• Combine the best of adult day care with respite
  care for individuals enrolled in hospice in a
  venue provided by a church
• Hospice would provide the medical oversight and
  volunteer training, the parish would provide the
  volunteers, use of the parish hall, food,
  recreational activities, etc.

63
Palliative Day Care

• Palliative day care for those enrolled in hospice
  could be combined with respite care for shut-ins
  from the parish.
• Typical day might start at 9-10 AM with brief
  refreshments (e.g. tea) then include activity
  (crafts, music, etc.), followed by lunch and then
  more activities in the afternoon ending at 4-5
  PM.

64
Palliative Day Care

• Hospice staff could come and see their patients
  during day care and provide consultative support.
  
• Many established parishes have church halls that
  may be available (underutilized) during the week.
• Starting with a palliative day care program one
  to two days a week can provide a much needed
  service not currently offered in the US and help
  a parish confirm a larger vocation/mission that
  may include creating a home for the dying poor
  which would require 24/7 support.