Spirituality and End of Life Care:
A Time for Listening and for Caring
Christina M. Puchalski, M.D.
The George Washington Institute for Spirituality
and Health (GWish)
The George Washington University School of
Medicine and Health Sciences
Washington, D.C.
© Christina Puchalski MD
Life Expectancy
• 1900: 50 years
• 1995: 75.8 years
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Causes of Death
1900
1.
2.
3.
4.
5.
6.
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Influenza
Tuberculosis
Diphtheria
Heart Disease
Cancer
Stroke
Causes of Death
1995
1. Heart disease
2. Cancer
3. Stroke
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Where People Die
• 1900: at home
• 1992: 57% in hospitals
37% in nursing homes
6% in residence
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Study to
Understand
Prognoses and
Preferences for
Outcomes and
Risks of
Treatments
------------------------------------------SUPPORT--------------------------------------------Christina Puchalski MD
JAMA 1995; 274:20 1591-1598
SUPPORT
• When patients had a clear preference for DNR,
their physicians did not know it.
• In many cases when the physician knew their
patients preference, it was not followed.
• 50% of patients had moderate to severe pain at
least half the time within their last few days in the
hospital.
• Most patients wanted to die at home: all died in
the hospital.
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Conclusions
• Although the SUPPORT intervention failed, we
can do better
• Advance directives aren’t necessarily the solution
• Improving communication and understanding are
keys to improving care for dying patients
• We need quality improvement projects directed at
quality of care for seriously ill and dying patients
(e.g. pain control)
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ABIM Survey, 1998
85% of medical residents surveyed
reported being very uncomfortable with
talking to patients about dying and about
their patients wishes as the end of life.
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New More Compassionate Model
of Care
Focus on The Whole Person
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Physical
Emotional
Social
Spiritual
Physicians must be compassionate and
empathetic in caring for patients… In all of
their interactions with patients they must
seek to understand the meaning of the
patients’ stories in the context of the patients’
beliefs and family and cultural values…
They must continue to care for dying patients
even when disease-specific therapy is no
longer available or desired.
MSOP Report 1, Association of American Medical Colleges, 1998
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Joint Commission on Accreditation of
Health Care Organizations (JCAHO)
Pastoral counseling and other spiritual
services are often an integral part of the
patient’s daily life. When requested the
hospital provides, or provides for, pastoral
counseling services.
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Physicians should extend their care for
those with serious medical illness by
attentiveness to psychosocial,
existential, or spiritual suffering.
American College of Physicians End-of-Life Consensus Panel, 1998
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Initiative in Improving
End-of-Life Care
• Last Acts Campaign, Robert Wood
Johnson Foundation
• EPEC, American Medical Association
• John Templeton Foundation and GWish
Awards on Curricula in Spirituality and Medicine
• IHI collaborative on Improving Care at
The End of Life
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What the Research Shows
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The overarching message that
emerges from this study is that the
American people want to reclaim
and reassert the spiritual
dimension in dying.
George H Gallup, 1997
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Dying patients have less death anxiety
than healthy patients. Religious
meaning and the strength of ones
religious beliefs play an important role
in one’s not being afraid to die.
Gibbs, H.W., Achterberg-Lawiis, J. J. “Spiritual Values and Death Anxiety: Implications for
Counseling with Terminal Cancer Patients.” Journal of Counseling Psychology (1970)
25(6): 563.
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Gallup Survey Key Findings
Finding Comfort in Their Dying Days
• Companionship
• Spiritual Comfort
“Spiritual Belief and the Dying Process:
A Report on a National Survey,” 1997.
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Gallup Surveys Key Findings, cont.
Spiritual Concerns
• Not being forgiven by someone for
something you did
• Not having a blessing from a family
member or clergy person
• What it will be like for you after you die
George H. Gallup International Institute.
“Spiritual Belief and the Dying Process:
A Report on a National Survey,” 1997.
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Gallup Surveys Key Findings, cont.
Reassurances That Give Comfort
• 89%: Believing that you will be in the loving
presence of God or a higher power
• 87%: Believing that death is not the end but a
passage
• 87%: Believing that part of you will live on
through your children and descendants
• 85%: Feeling that you are reconciled with those
you have hurt or who have hurt you
Christina Puchalski MD
George H. Gallup International Institute.
“Spiritual Belief and the Dying Process:
A Report on a National Survey,” 1997.
Gallup Surveys Key Findings, cont.
Reassurances That Give Comfort
• 82%: Having given or received the
blessings that are important to you
• 76%: Believing that you have made your
mark on the world
• 55%: Knowing that ritual prayers will be
performed for you
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George H. Gallup International Institute.
“Spiritual Belief and the Dying Process:
A Report on a National Survey,” 1997.
Research in Spirituality and Health
Coping: Advanced Cancer
• Patients in a hospice in Burlington, VT,
were studied. Their spiritual beliefs were
found to be positively correlated with:
- increased life satisfaction
- happiness
- diminished pain
Yates, Med Ped Onc, 1918; 9:121-128
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Research in Spirituality and Health
Coping: Pain Questionnaire by Amer Pain
Society to Hospitalized Patients
• Personal Prayer most commonly used
non-drug method for pain management:
-
Pain Pills
Prayer
Pain IV Med
Pain Injections
Relaxation
Touch
Massage
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82%
76%
66%
62%
33%
19%
9%
McNeill, JA et.al.
J of Pain and Symptom Management, 1998; 16(1):29-40
Research in Spirituality and Health
Coping: Bereavement
• Study of 145 parents of children who died
of cancer:
- 80% reported receiving comfort from their
religious beliefs one year after their child’s death
- Those parents had better physiologic and
emotional adjustment
- 40% of those parents reported strengthening of
their own religious commitment over the course
of the year prior to their child’s death
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Cook, J Sci Study of Religion, 1983; 22:222-238
Research in Spirituality and Health
Coping: Study of 108 Women Undergoing
Treatment for GYN Cancers
• When asked what helped them cope with
their cancer, the patients answered:
- 93%: spiritual beliefs
- 75% noted their religion had a significant place
in their lives
- 49% became more spiritual after their diagnosis
Roberts, JA et.al.
American Journal of Obstetrics and Gynecology 1997; 176(1):166-172
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Research in Spirituality and Health
Quality of Life
• Existential domain: measures purpose,
meaning in life and capacity for personal
growth and self-transcendence:
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Personal existence… meaningful
Achieving life goals… fulfillment
Life to point… worthwhile
These items correlate with good quality of life
for patients with advanced disease
Cohen, SR. Mount, BM et.al.
Palliative Medicine 1995; 9:207-219
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Caregiver Stress and Spirituality
Caregivers who felt close to God, prayed
frequently, and believed religion to be
important felt less stress and were better
able to cope with caregiving demands.
Ana Paula Cupertine
APA, August 1998
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Caregiver Stress and Spirituality,
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Felt more useful and more confident
Found new meaning to their lives
Experienced strengthened relationships
Were more able to appreciate life
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cont.
HIV+ Patients Who Were Also
Religions Were:
• Less likely to fear death
• More likely to have discussions about
resuscitation status
Kaldjian, L.C. et.al. “End-of-Life Decisions in HIV-positive Patients:
The Role of Spiritual Beliefs.” AIDS, 1998; 12(1): 103
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Spiritual Identifiers in Dying Patients
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Is there purpose or value to their life?
Are they able to transcend their suffering?
Are they at peace with themselves and others?
Are they hopeful, or are they despairing?
What nourishes their personal sense of value:
prayer, religious commitment, personal faith,
relationship with others?
• Do their beliefs help them cope with their anxiety
about death and with their pain, and do they aid
them in attaining peace?
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Assessment of the Meeting of
Spiritual Needs
• Does the health care provider listen to their beliefs,
faith, pain, hope or despair?
• Are patients able to express their spirituality
through prayer, art, writing, reflections, guided
imagery, religious or spiritual reading, ritual, or
connection to others of God?
• Are referrals made to chaplains, counselors, or
spiritual directors when appropriate?
Christina Puchalski MD