Spiritual Issues in the Care of Dying Patients

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Spiritual Issues in the Care of Dying Patients
Daniel P. Sulmasy, MD, PhD Department of Medicine
Divinity School The University of Chicago
The views presented herein should not be
construed as necessarily representing those of
the U.S. Presidential Commission for the Study of
Bioethical Issues
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A Case Mr. W

• 54 yo man
• h/o bronchitis, HTN, nephrolithiasis
• 3 mos before admission back pain
• MRI T7 lytic lesion
• Bx adenoCA
• w/u pancreatic mass, lung nodules
• T7 corporectomy fusion
• Post-op dyspnea ? malignant effusion
• 80 O2 by FM

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Palliative Care Consult

• DNR/DNI orders
• BiPap, chest tube, diuretics, antibiotics
• Stabilized on oxygen by vapotherm
• Possible courses of action
• Hospice
• Chemo (but only after rehab and stabilization)
• But wanted all options believed God would
  miraculously cure him
• Therefore, hospice was ruled out
• Attention to symptoms, maximizing chances for
  chemo

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Mr Ws Perspective

• I believe in the God of the Bible and that he
  is the God of miracles. When I say that I mean
  that I could, 5 minutes from now, stand up
  completely healed and walk out of here, because I
  believe that He can do instantaneous healing.
  But, I also know that it's no less a miracle if
  3, 6, or 9 months from now, I realize that
  everything is gone and Im fully functional.I
  don't know if they've incorporated my beliefs
  into planning for my future...

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Mr. W, contd

• A couple of days ago when the palliative
  care team was here, the social worker heard me
  saying things about living for many more years,
  and she came in the next day and told me that
  things had changed. She told me that she had
  been looking for hospice care for me, which is
  just to take care of me for the last 6 months of
  my life. She said that since I was planning on
  living longer than 6 months, she needed to look
  for something else for me. So, my beliefs did
  affect her outlook on things.

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Dr. Ds Perspective

• I assumed that he wasnt giving me the
  details of what he believed in. He wasnt
  necessarily comfortable talking about it. I had
  deep conversations with him, but we never spoke
  explicitly about what we believed in, because I
  didnt feel that opening with him. But, I did
  talk about issues in a more general fashion. You
  tread the line between being respectful of
  others wishes to share them with you and probing
  to a certain extent. I wonder why I didnt ask
  this patient those questions.

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Rev. Ss Perspective

• When I look at a patient, in this case a
  dying patient, I really look at the primary core
  spiritual need that they are presenting to me. Is
  it a quest for meaning to try to determine what
  their life meant or what their faith means? Or,
  are they presenting a need for affirmation,
  support, and community, a kind of valuing from
  the people around them? Or, are they looking for
  reconciliation in relationshipsthey're
  presenting broken relationships with people that
  they can't say goodbye to because they can't let
  go in good conscience and they are carrying
  resentment about the past.

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Caveats

• Broad overview of spiritual issues
• Concentrate on one
• Case requires concentration on Christianity
• Brief mention of other religions
• Many issues cut across religions and
  non-religious spiritual practices

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Text Subtext

• Sounds like a crisp clean clear case
• Presentation does not address deeper personal
  and spiritual issues
• Dr. D hesitates to ask

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Typical Medical Responses

• Ignore these issues
• Problematize them
• Disposition
• Denial
• Code status
• Futility
• Spirituality is beyond these categories

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Spirituality, Health, Health Care

• Part of HRQoL
• McGill major driver at EOL
• Data major driver of dissatisfaction
• Lack of attention to spiritual needs
• Religious beliefs medical ethics
• Support for PAS
• Use of feeding tubes
• Religious practices tied to health
• Diet, risky behaviors
• Outcomes from psychiatric diseases
• Religious service participation ? longer life

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Spirituality

• Ones relationship with the transcendent
  questions that confront one as a human being and
  how one relates to these questions.

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Religion

• A set of texts, practices, and beliefs about
  the transcendent, shared by a particular
  community.

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Illness a disturbance in relationships

• Ancient peoples
• Western, scientific medicine
• Beyond the individual body...

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Relationships that illness disrupts

• Family and work
• The transcendent
• Meaning
• Value
• Relationship

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Healing

• The restoration of right relationship
• The milieu interior
• The divine millieu

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Physicians are less religious than patients

• 83 of Americans believe in God
• But only 76 of physicians
• 73 of Americans try hard to carry their
  religious beliefs into all aspects of their
  lives
• But only 58 of physicians

Curlin et al J Gen Intern Med 200520629-34
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Patients want more spiritual attention from
health care professionals

• 52-94 want their physicians to inquire about
  their spiritual needs
• Yet, rarely happens
• Even 45 of non-religious patients say yes
• 48 in one survey want their physicians to pray
  with them

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Patients rarely experience such attention

• Appropriateness of physician inquiring about
  spiritual needs
• Has staff inquired about spiritual needs?
• Has physician inquired about spiritual needs?

• 58
• 6
• 1

Astrow, et al. J Clin Oncol 2007255753-7
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Single strongest predictor of dissatisfaction
with care and low ratings of quality of care

• My spiritual needs have not been met
• Oncology outpatients
• Multivariate models controlling for
  life-satisfaction
• ß -.162 p .006
• Astrow, et al. J Clin Oncol 2007255753-7
• Univ. of Chicago Hospitalist Study
• Patients who discussed R/S concerns with hospital
  staff were more likely to be extremely satisfied
  with their medical care (74 vs. 63, OR 1.7,
  95CI 1.4-2.0)
• regardless of whether or not they had wanted such
  discussion to occur
• Williams et al. J Gen Intern Med 2011 (DOI
  10.1007/s11606-011-1781-y)

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The biopsychosocial-spiritual model in practice
research
Quality of Life
DEATH
Spiritual History
Present Spiritual and Biopsychosocial State
Modified Biopsychosocial State
Modified Spiritual State
Biopsychosocial History
Spiritual Intervention
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The Major Spiritual Questions

• Meaning
• Hope and despair
• Value
• Dignity and indignity
• Relationship
• Reconciliation and alienation

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How?

• Meaning
• What do you make of all this?
• Is there a hope you can see beyond cure or even
  control of your disease?
• Is hope a spiritual word for you?

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How?

• Value
• Can you hold on to your own sense of dignity in
  the midst of this?
• Seems like a lot of people really care about
  youas a person. Is that true?
• Are there any spiritual or religious resources
  upon which you can draw to help see you through
  this?

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How?

• Relationship
• How are things with your family and friends?
• Is there anyone to whom you need to say I love
  you or Im sorry?
• (For a religious patient) How are things between
  you and God?

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An exit strategy

• I cant do everythingthats why we work as a
  team. I think weve covered some very important
  ground here, but theres so much more to talk
  about. If its okay with you Im going to send
  Rev S to see you later today. Also, Id like to
  tell her a little about what youve just shared
  with me so she can be better prepared. Would
  that be okay?

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Why do clinicians hesitate?

• Trouble facing the limits of medicine
• Its an awful thing to come to the patient with
  your bag of tricks empty.
• Fear of invading privacy offending
• You tread the line between being respectful of
  others wishes to share them with you and probing
  to a certain extent.

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Why MDs?

• Patients want them to
• Surveys
• Ethics
• a commitment to treat patients as whole persons
• No one else may discover the problem
• e.g., negative religious coping
• Identify resources for patient
• chaplains, clergy, congregations

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Referral

• Pastoral Careexpertise
• Team Model
• Role confusion for patients

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Clinical clues

• Amulet, Qran, Bible, Shabbat candles
• An open-ended response

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Spiritual History

• FICA
• Faith Beliefs
• Importance
• Community
• Act or address
• What role does spirituality or religion lay in
  your life?

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Inpatient setting

• Stranger medicine
• Sit down
• How are you doing with all this?

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Selected aspects specific religious beliefs about
death dying

• Buddhism the opportunity to chant or to hear
  others chanting if unable
• Catholicism the Sacrament of the Sick (requires
  a priest) viaticum (communion)
• Hinduism the use of mala (prayer beads) strong
  preference to die at home
• Islam opportunity to die facing Mecca,
  surrounded by loved ones
• Judaism opportunity to pray vidui (confessional
  prayer) and the Shema

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Ethics

• Boundaries
• No proselytizing
• No prayer with consent
• Justification
• Intimacy power imbalance
• Vulnerability respect for autonomy
• Safest bet
• start gingerly follow patients lead

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Clinician not religious, Pt is religious

• Moral obligation of MD to attend to patients
  spiritual and religious needs
• Respect
• Referral
• I do not share your faith, but I understand how
  important Buddhism is to you, especially at this
  time, as a source of hope, value, and strength.
  How can I help you live well as a Buddhist for as
  much time as remains for you?

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The spiritual needs of non-religious persons

• Easily overlooked
• More difficult to address without established
  practices, texts, etc.
• But just as important

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Miracles a special consideration

• When patients or families pray for (and expect)
  miracles that physicians deem, to a reasonable
  degree of medical certitude, impossible

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Defensible Judgments of Futility

• Biomedical standard
• not subjective standard
• to a reasonable degree of medical certitude
• An objective judgment

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Denial

• A common defense mechanism
• A diagnosable syndrome
• Judgment
• a helpful coping mechanism
• a dysfunctional state

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The Double-Bind

• Disrespectful to say never can distinguish denial
  from belief in miracles (assumes religious belief
  is equivalent to a delusion)
• Yet, very difficult to question anothers
  religious beliefs, especially if the patient is
  not of ones own religion

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What to do

• Listen attentively
• Interpreting as abandonment
• Expressing distrust
• True psychiatric distress guilt, ambivalence,
  stress, denial
• Do not try to re-frame
• Work with chaplains, clergy, psychiatrists

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Listening to Mr. W

• Not in denial
• Accepted DNR/DNI
• Accepted the idea that God might not answer his
  prayers as he would like
• I always include in my prayers, God, not as I
  would have it, but as you would have it. I dont
  think thats a cop-out.

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Hospice and belief in miracles

• Nothing in the federal regulations says that
  patients who believe in miracles are ineligible
  for the hospice benefit.

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Hospice and miracles

• MDs need to believe prognosis lt 6 mos.
• PT can believe he will live 100 more years
• Can enroll saying,
• Best program for control of sx
• Not able to take chemo now
• If you miraculously improve, you can dis-enroll
  and well start the chemo
• So keep on prayin

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Physicians, prayer patients

• Not ushering clergy out of the room
• Not leaving when clergy arrive
• Not leaving as patient prays
• Intercessory prayers or laying on of hands
• Requires careful consent

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• While spiritual issues arise in the settings of
  acute and chronic illness as well, spiritual
  issues assume a special salience in care at the
  end of life.
• The care of Mr W illustrates how the spiritual
  needs of patients are inextricably bound up with
  the traditional duties of physicians.
• Attending to these needs is integral to the job
  of being a good physician.

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