Discussing Religious and
Spiritual Issues at the End of Life
A Practical Guide for Physicians
JAMA. 2002;287:749-754
Bernard Lo, MD; Delaney Ruston, MD; Laura W. Kates; Robert M. Arnold,
MD; Cynthia B. Cohen, PhD, JD; Kathy Faber-Langendoen, MD; Steven Z. Pantilat,
MD; Christina M. Puchalski, MD; Timothy R. Quill, MD; Michael W. Rabow, MD;
Simeon Schreiber; Daniel P. Sulmasy, OSM, MD, PhD; James A. Tulsky, MD; for the
Working Group on Religious and Spiritual Issues at the End of Life
As patients near the end of life, their
spiritual and religious concerns may be awakened or intensified. Many
physicians, however, feel unskilled and uncomfortable discussing these
concerns. This article suggests how physicians might respond when patients or
families raise such concerns. First, some patients may explicitly base
decisions about life-sustaining interventions on their spiritual or religious
beliefs. Physicians need to explore those beliefs to help patients think
through their preferences regarding specific interventions. Second, other
patients may not bring up spiritual or religious concerns but are troubled by
them. Physicians should identify such concerns and listen to them
empathetically, without trying to alleviate the patient's spiritual suffering
or offering premature reassurance. Third, some patients or families may have
religious reasons for insisting on life-sustaining interventions that
physicians advise against. The physician should listen and try to understand
the patient's viewpoint. Listening respectfully does not require the physician
to agree with the patient or misrepresent his or her own views. Patients and
families who feel that the physician understands them and cares about them may
be more willing to consider the physician's views on prognosis and treatment.
By responding to patients' spiritual and religious concerns and needs,
physicians may help them find comfort and closure near the end of life.
JAMA. 2002;287:749-754
As patients nearing the end of life grapple with
their mortality, their spiritual and religious concerns may be awakened or
intensified.1-5 Such concerns
may be the basis of patients' medical decisions, including decisions about
life-sustaining interventions. Some patients may explicitly raise spiritual or
religious issues with physicians,6-9 whereas others may
not discuss them but may be troubled by them or make medical choices based on
them that physicians consider unreasonable. In these situations, physicians
need to address patients' spiritual or religious concerns to provide better
care. In addition, knowing these concerns helps physicians to understand
patients' needs and to provide them with respectful, comprehensive end-of-life
care.1, 10-15
Many physicians, however, feel unskilled and
uncomfortable discussing patients' spiritual and religious concerns16-18 and therefore may
avoid such conversations.6 This article suggests
how physicians might respond when patients or families raise such concerns near
the end of life. Although chaplains and clergy typically help address these
issues, in some cases they may not be available or the patient may not want to
talk to them. We analyze 3 cases in which responding to patients' spiritual and
religious concerns helps physicians reach decisions about life-sustaining
interventions and alleviate patient distress.
CLARIFYING RELIGIOUS STATEMENTS BY PATIENTS
When making clinical decisions about
life-sustaining interventions, some patients refer to their religious or
spiritual beliefs. In the following case, the physician regards these religious
references as a distraction from her primary task of making a decision about
cardiopulmonary resuscitation (CPR), thereby missing an important clue about
what is important to the patient.19, 20
Case 1
Case 1 concerns religious beliefs in a discussion of do not resuscitate (DNR)
orders. Mr R is a 77-year-old, white, retired mechanic who has class II
congestive heart failure and coronary artery disease that cannot be
revascularized. After an emergency department visit for an exacerbation of
congestive heart failure, his physician raises the issue of a DNR order. After
checking the patient's understanding about his illness, the physician describes
CPR.19 The following
conversation then occurs.
PHYSICIAN: In your situation, CPR is very unlikely to succeed. What do you
think about what I have said?
MR R: Well, I want you to do what you can. I trust that God will decide
when it's my time.
PHYSICIAN: Absolutely. Let me ask you, if you were to have a heart attack,
your heart stopped, and you died, would you want us to try CPR?
This exchange is typical of DNR discussions.19 This physician
pursues her agenda of settling the issue of CPR, which seldom is a priority for
the patient.21 Pressing the
patient to make a decision about CPR is unlikely to succeed, causing both the
physician and patient to feel frustrated.19 Mr R may feel that
the physician is pushing him to make a decision that he has not had time to
think through. Instead of pushing for an immediate decision about CPR, the
physician might try to understand how the patient is thinking especially in
light of his comment about God.10, 22, 23 Many patients want to
discuss spiritual and religious issues with physicians.6-9
PHYSICIAN: What do you mean when you say that you trust God?
MR R: Well, I place myself in God's hands.
PHYSICIAN: Tell me more about what it means to place yourself in God's
hands.
MR R: God has a plan about how long I should live.
The physician may feel frustrated that she is no
closer to her goal of clarifying Mr R's DNR preferences, even though she has
tried to elicit his concerns and values (Box 1).24, 25 Physicians vary
regarding the techniques they find useful when probing for patients' values.
For example, some physicians or patients consider a phrase such as "Tell
me more about . . ." too psychologically oriented or forced. Another way
to advance the discussion while following the patient's pace is to ask directly
how his views of God are related to his decision about CPR.
PHYSICIAN: You mention trust in God. Does your trust in God lead you to
think about CPR in a particular way?
MR R: If God calls me, I am ready. But when is he [God] really calling?
I just don't know.
At this point, physicians might proceed in
several ways. Some physicians might make an empathic comment such as, "I
imagine I would feel pretty puzzled too about not knowing" or "That
sounds like a painful situation." Such comments would be particularly
useful if the physician believes that the patient's emotions are causing
distress or impeding a decision. Other physicians might invite Mr R to say more
about how his ideas about God relate to his preferences about CPR: "Do you
have any ideas about that?" Still others might be more directive,
summarizing the discussion and making the issue of CPR more explicit: "Let
me be sure I've understood. It sounds like if you thought God was calling you,
you wouldn't want us to try to revive you. But you're not sure when God is
calling you. Is that right?" If the patient agrees, the physician might
then say, "If I told you how likely it is that CPR would succeed in
various situations, would that help you decide whether God was calling
you?" or alternatively, "When you've known other people who have
died, what do you think helped them to know when God was calling"? Through
such discussions, the physician can help Mr R think through his preferences
about CPR, based on what is important to him and the medical situation.
RESPONDING TO STATEMENTS THAT MAY INDICATE
SPIRITUAL AND RELIGIOUS CONCERNS
In other situations, the spiritual or religious
nature of a patient's concerns may be less obvious than in case 1. Yet
physicians need to become aware of these concerns to respond to them
appropriately.
Case 2
Case 2 concerns questions about why an illness has happened. Mrs L is a
64-year-old woman undergoing combination chemotherapy for metastatic small cell
carcinoma of the lung. She visits her physician 2 days after an emergency
department visit for dehydration caused by nausea and vomiting associated with
the chemotherapy.
PHYSICIAN: How have you been doing?
MRS L: I don't know. I keep wondering why all of this is happening to
me.
PHYSICIAN: Well, as we talked about, chemo tends to make people feel down.
Tell me, how much have you been able to eat and drink since you got home?
In this conversation, the physician presses
forward with biomedical questions, assuming that Mrs L is asking why she became
dehydrated. Although it is important to evaluate her hydration, the physician
misses an opportunity to explore her concerns first.20, 26 Mrs L's question,
"Why is this happening to me?" might have several meanings. She may
be asking for scientific information. For example, why did severe vomiting
occur after premedication with antiemetics? Or, why did the cancer occur after
she stopped smoking? However, Mrs L may also be asking about psychosocial,
existential, or spiritual issues. She may be trying to find meaning in tragic
events, asking why bad things happen to good people.13, 15, 27 The physician can
distinguish these possibilities through an open-ended question.
PHYSICIAN: Do you have any thoughts about that?
MRS L: Well, I wonder why God would do this to me.
PHYSICIAN: Tell me more about that.
MRS L: I've been active in my church. I've tried to be a good wife and
mother. I just don't understand it.
The physician may feel that this discussion has
reached a dead end, despite his efforts to elicit the patient's perspective.
However, continued attempts may help the physician understand Mrs L's concerns,
which are apparently spiritual in nature, and thereby provide her some comfort.
PHYSICIAN: It sounds like you can't understand why this would happen given
all that you've done to lead a good life.
MRS L: Yes, I sometimes feel that God is punishing me, even though I've
tried to be a good person. Why else would God let this happen?
PHYSICIAN: It sounds like you're thinking about the past, trying to figure
out what you might have done.
MRS L: Yes, that's it [tearful].
This dialogue is not a digression but an
integral part of clinical care because it builds empathy and helps relieve
distress. Empathic comments can be therapeutic, showing that the physician has
understood the patient and cares about her.28-31 Patients who
believe that the physician has really understood them may no longer feel alone
with their distress.29, 32
The physician in case 2 avoids several pitfalls
in responding to Mrs L's spiritual and religious concerns (Box 2). First, he does not try
to solve her problems.10 Trying to relieve
suffering is a compassionate human response and the goal of palliative care.
Fixing problems is the focus of biomedical training. However, spiritual suffering
cannot be "fixed" in the same way that pain may be alleviated with
analgesics. The physician cannot answer the ultimate question of why good
people have fatal diseases. Yet paradoxically, patients may feel comforted when
another person is simply present or "walks with" them.33
Second, the physician does not step beyond his
expertise and role.15, 17, 18, 34-37 Physicians should
respect patients' religious and spiritual views and avoid expounding or
imposing their own beliefs.11, 18, 35, 38 Unlike chaplains and
clergy, few physicians have the training or expertise to engage in theological
discussions about the nature of God, sin, and punishment.15, 18 Moreover, the roles
of physician and spiritual counselor usually are best kept separated,11, 15, 17, 18, 34, 35, 39 except perhaps when a
physician has also had pastoral care or seminary training.
Third, the physician does not offer premature
reassurance. When a patient questions the worth of her life, compassion may
impel the physician to say that cancer is not a punishment from God. However,
immediate reassurance may seem superficial and fail to achieve its goal. It
might also deter patients from disclosing other important issues and emotions.24, 26 As a result, patients
may be burdened by unexpressed concerns and feel that the physician has not
understood them.24, 26
Physicians may find it difficult to refrain from
attempting to alleviate the patient's spiritual suffering or from offering
immediate reassurance. To overcome their skepticism, physicians might recall
the last time they came home from work and said, "I had a terrible
day." Was it helpful if your spouse offered advice about dictating notes
after each patient or reassurance that the next day would be better? Or was it
more helpful if others listened to your story, asked questions, and
acknowledged, "It does sound like a terrible day?" Such reflections
may help persuade physicians that they may not have answers to the patient's
spiritual or religious questions, but they still can provide a supportive
setting that helps patients to find their own solutions.
RESPONDING TO A PATIENT'S QUESTIONS ABOUT THE
PHYSICIAN'S RELIGION
During discussions of the patient's spiritual
and religious concerns, he/she may ask about the physician's religion or
whether the physician believes in God or is born-again.18 Patients may have
various reasons for such inquiries. They may wonder whether it is safe to talk
about spiritual and religious issues with the physician. They may prefer a
physician who is sensitive to spiritual issues, is religious, or shares the
same faith.18, 40 In social
relationships, a disclosure by one person often leads to a reciprocal
disclosure by the other. More problematically, some patients may be curious to
know personal information about their physician or may want to engage the
physician in religious discussions.
Physicians might respond in several ways to such
questions. Many physicians may feel that their religion is a private matter and
choose not to disclose it to their patients.18 If they are of a
different faith, they may be concerned about a rift with the patient.18 Physicians have no
obligation to answer questions about their religion. However, physicians need
to consider how to decline without discouraging patients from voicing their
spiritual or religious concerns. A physician might say, "I'd like to keep
the focus on you rather than me."
Other physicians might simply disclose their
denomination. However, in addition to answering the patient's factual inquiry,
such physicians should also explore why the question is important to the
patient.24
PHYSICIAN: I am Jewish, but I am curious about why you asked.
MRS L: I guess I was wondering if you could understand my questioning of
God.
PHYSICIAN: I'll certainly try my best. Many patients question why bad things
happen to good people. It is important for me to know that you are struggling
with this and that religion is important in your life.
Physicians who disclose their denomination need
to set appropriate limits. The question "What religion are you?" is
not an invitation for physicians to explicate their spiritual and religious
beliefs. If patients ask about details, it is appropriate to focus the
conversation back on the patient.
RESPONDING TO RELIGIOUS REASONS FOR REJECTING
THE PHYSICIAN'S MEDICAL RECOMMENDATIONS
Patients and their families may insist on
interventions that physicians consider futile.41, 42 Such insistence may
result from disagreements over prognosis, rejection of physician authority,
distrust of the medical system, or a religious belief in miracles.
Case 3
Case 3 deals with belief that a miracle will occur. Mrs M is a 72-year-old
black woman with chronic obstructive pulmonary disease who has been receiving
mechanical ventilation for 2 months because of acute respiratory distress
syndrome and multiorgan failure. Believing that Mrs M now has only a 1% chance
of being successfully extubated, her physicians begin to discuss limiting
life-sustaining interventions. Mrs M is unable to participate in these
discussions. She had previously indicated that her husband should act as her
surrogate but did not provide specific directives for her care. Mr M and their
2 children insist that mechanical ventilation be continued.
PHYSICIAN: Let me explain again how sick she is and that she has not
improved, despite all our efforts.
MR M: We know that she is very sick.
PHYSICIAN: Yes, she is very sick. Her lungs are not healing. She is barely
holding on.
MR M: God has stronger healing powers. He will answer our prayers and
work a miracle.
PHYSICIAN: You know, miracles are rare. Most of the time they don't occur.
This exchange illustrates how physicians may
seem to dismiss religious-based insistence on interventions they consider
ill-advised. In these conversations, each party may feel frustrated and believe
the other party is not listening. The physician in this case uses common but
usually ineffective tactics to try to dissuade the family. First, she tries to
provide more facts or arguments.43 However, such
insistence usually springs from different values, not factual misunderstandings
or disagreements. Second, the physician argues that miracles by definition are
unlikely. However, faith in miracles does not depend on their probability.
Other physicians might try to reframe the concept of "miracle." For
example, they might suggest that the miracle will not be Mrs M's recovery but
rather the gathering of relatives to be with her a final time. Although the
family might reach this reformulation on their own, they are unlikely to be
persuaded by someone who does not believe in miracles. Furthermore, using the
family's religious terms to get them to agree with the physician's plan can be
manipulative. As tension mounts, physicians and families may become polarized,
and disagreements may escalate into conflicts. Rather than reiterate her own
position or press the issue of limiting interventions, the physician might do
better to listen to the family and try to understand their views.44
PHYSICIAN: What would a miracle look like to you?
MR M: We know that he [God] will answer our prayers. The bible says
that prayer can move mountains.
PHYSICIAN: I see that your faith is very important to you.
MR M: It is. Our faith is strong that God will work a miracle and she
will come home with us.
PHYSICIAN: I also hope she can go home.
MR M: We just want you to do your best, so that God's will can be done.
The physician has defused the disagreement by
listening to Mr M's views on miracles, acknowledging the importance of religion
for him, and aligning with his hopes that Mrs M might recover. In turn, Mr M
seems more accepting of the limits of medicine in this situation. "I
wish" or "I hope" statements by physicians can be particularly
useful in such situations.45 Stating a wish allows
the physician to share the family's hope without reinforcing unrealistic
expectations.45 However,
framing the statement in this way also implies that it is unlikely that these
hopes will be realized.
After finding common ground with Mr M, the
physician can explore whether his religious views have other implications for
Mrs M's medical care.
PHYSICIAN: As you think about Mrs M's illness, what else do you hope for?
MR M: We hope, we know, that God will not let her suffer.
PHYSICIAN: Do you feel that she is suffering now?
MR M: She has all those needles and tubes, and she doesn't recognize us
most of the time.
After listening to Mr M's belief in miracles,
acknowledging the importance of religion to him, and aligning with his hopes,
the physician may appropriately turn the discussion toward other hopes for that
patient. However, asking about Mr M's other hopes as soon as he mentioned
miracles might seem dismissive or disrespectful of his religious beliefs.
In addressing Mr M's religious concerns, the
physician achieves several important goals (Box 3). First, clarifying Mr
M's belief in miracles helps the physician appreciate why the family wants to
continue "futile" interventions and how faith is a source of support
and hope to this family. Second, the physician connects with the family.
Listening respectfully does not require the physician to agree with the family
or misrepresent her own views. Once the family feels that the physician
understands them and cares about the patient, they may be more willing to hear
her views on prognosis and care.44 Third, the physician
works toward shared goals. After the physician acknowledges the importance of
religion to Mr M, it is safer for Mr M to express his ambivalence about his
wife's condition. Subsequently, the physician and Mr M might be able to agree
on relief of suffering as a goal of care. In turn, this goal might help the
physician and family agree on specific clinical decisions about ventilation,
vasopressors, dialysis, and CPR. After such discussions, some families or
patients may make choices that differ from the physician's recommendation.
However, these discussions will at least reduce the conflict and ill will over
such decisions.
When a patient cannot speak for herself, her
physicians need to ascertain whether her own beliefs are consistent with those
expressed by her family. In this case, the physician later learned that Mrs M
had led prayer breakfasts and bible study groups and had expressed views
similar to her husband's. The physician therefore felt reassured that Mr M was
accurately conveying her beliefs.
Knowledge of their religious concerns and
beliefs may help physicians mobilize support for patients and families. Many
will welcome visits, prayers, scriptural readings, and religious rituals from
chaplains or clergy of their own choosing. Equally important, however, other
patients and families may not want ministrations from chaplains and clergy;
their views should also be respected.
In conclusion, physicians responding to
spiritual and religious concerns that patients raise near the end of life can
keep in mind several guidelines. First, they should respect the patient's views
and follow the patient's lead in exploring how these issues affect their
decisions about medical care, cause distress, or provide comfort. Second,
physicians need to appreciate the limits of their expertise, role, and
training. It is appropriate for the physician to listen, ask clarifying
questions, and explore the patient's feelings, as with any topic of importance
to the patient. However, physicians should not try to convert patients and
generally should not engage in theological discussions or invite patients to
participate in religious rituals. Third, physicians should maintain their
integrity and not say or do anything that violates their own spiritual or
religious views. These guidelines may provide physicians with tools to help
patients find comfort and closure near the end of life.
Author/Article Information
Author Affiliations: Program in
Medical Ethics, Division of General Internal Medicine, University of
California, San Francisco (Drs Lo, Ruston, Pantilat, and Rabow and Ms Kates);
Division of General Internal Medicine, Center for Bioethics and Health Law,
University of Pittsburgh School of Medicine, Pittsburgh, Pa (Dr Arnold);
Kennedy Institute of Ethics, Georgetown University, Washington, DC (Dr Cohen);
Center for Bioethics and Humanities, State University of New York Upstate
Medical University, Syracuse (Dr Faber-Langendoen); Division of Aging Studies,
Institute for Spirituality and Health, George Washington University School of
Medicine, St Louis, Mo (Dr Puchalski); Program for Biopsychosocial Studies,
Department of Medicine, University of Rochester School of Medicine, Rochester,
NY (Dr Quill); Hackensack University Medical Center, Hackensack, NJ (Rabbi
Schreiber); John J. Conley Department of Ethics, Saint Vincent's Manhattan, The
Bioethics Institute of New York Medical College, New York, NY (Dr Sulmasy); and
Program on the Medical Encounter and Palliative Care, Department of Medicine,
Duke University, Durham, NC (Dr Tulsky).
Corresponding Author and Reprints:
Bernard Lo, MD, Room C 126, 521 Parnassus Ave, San Francisco, CA 94143 (e-mail:
[log in to unmask]).
Funding/Support: The Working Group on Religious and Spiritual Issues at the End of
Life was supported by the Greenwall Foundation, New York, NY.
Acknowledgment: We thank the other members of the Working Group on Religious and
Spiritual Issues at the End of Life for their thoughtful review and analysis of
cases and dialogues: Connie Borden, RNP, LaVera Crawley, MD, Nancy Neveloff
Dubler, LLB, Seth Holmes, and Rodney Seeger, MDiv.
|
Box
1. Phrases to Help Elicit the Patient's Concerns 1. Use open-ended questions. Examples:
2. Ask the patient to say more. Examples:
3. Acknowledge and normalize the patient's concerns. Examples:
4. Use emphathic comments. Examples:
5. Ask about patient's emotions. Examples:
|
Does your trust in God lead you to think about cardiopulmonary
resuscitation in a particular way?
|
Box
2. Pitfalls in Discussions About Spiritual and Religious Issues Near the End
of Life
|
|
Box
3. Goals for Physicians When Discussing Spiritual and Religious Issues With
Patients and Families Near the End of Life
|
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