[Sent – 12 October 2019 to the 170+ surgeons et al of our Surgical Ethics (Education) Consortium]
Greetings from St. Louis and WashU. For ‘Surgical Ethics Education Resources’ communication #23, I am sharing with you the second of two selections from the most recently revised/updated draft of a Grand Rounds presentation for Ob/Gyn residents in the Phoenix area I initially delivered two decades ago titled “Addressing patients’ spiritual wellbeing”. As I explained in the cover note for #22 a few weeks ago, the impetus then for addressing this subject was the opportunity to participate in the creation at Vanderbilt of a training video for in-servicing hospital staff in response to the new Joint Commission accrediting standard re addressing patients’ spiritual needs. Note – the definition/differentiation of the spiritual dimension of patient care I am offering for your consideration in this and the previous communication focuses on the integrity of every patient and family whether or not they are religious. I remain convinced that the definition and approach in this essay illuminate a clinically significant link between spirituality and ethics. I welcome your feedback and would be pleased to learn about ways you have found to incorporate attention to patients’ spiritual (in)stability when challenged by illness or injury. Doug
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Assessing a Patient’s Spiritual Wellbeing: A Few Suggestions
Douglas Brown, PhD
Douglas Brown, PhD
Understanding a patient’s spiritual distress:
The root meaning for ‘distress’ has to do with pressure or strain. To be distressed, therefore, is to be tense, troubled, oppressed, threatened. ‘Spiritual distress’ has to do with the loss of peace, joy, hope, and resolve individuals experience (to varying degrees) when faced with unsettling life circumstances that threaten to overwhelm their core paradigm by/within which they live day-to-day. Caregivers are trained to think in terms of the least invasive/intrusive means (i.e., ‘do no harm’) to resolve a patient’s problem. The response to an asthmatic patient who is wheezing is less intensive than the response to an asthmatic patient who is listless. The intervention should match the level of concern/danger. Caregivers should have an analogous framework by which to assess a patient’s spiritual wellbeing. Think in terms of two sides of a spectrum – i.e., ‘spiritually centered’ and ‘spiritually distressed’ – separated by a threshold. Variations of being ‘spiritually centered’ range from ‘thriving’ to ‘holding’. Variations of being ‘spiritually distressed’ range from ‘troubled’ to ‘despairing’.
‘Spiritually Centered’
‘thriving’<-----------------> ‘holding’
‘thriving’<-----------------> ‘holding’
‘Spiritually Distressed’
‘troubled’<-----------------> ‘despairing’
Caregivers cross a threshold when the description on the spectrum that most fully accounts for their observations about a patient shifts from ‘spiritually centered’ to ‘spiritually distressed’. ‘troubled’<-----------------> ‘despairing’
Patients who are spiritually centered are capable of participating meaningfully in the decisions about their care and can be counted on to be diligent in fulfilling their responsibilities. They come across as attentive, hopeful, and self-confident. They ask insightful questions, make accurate comments about their condition, and have a sense of humor. Other of these patients may be struggling to maintain their balance and focus. They show signs of being fearful, upset, disoriented, and impatient. As these dispositions strengthen, they are moving toward and may eventually cross the threshold into being spiritually distressed.
3.4 Patients who are spiritually distressed complicate the decision-making process and the management of their care. Some of these patients are troubled for inward as well as circumstantial reasons. They are losing confidence, motivation, hope. They may appear despondent or panicky. They may deny the reality of their situation. Other of these patients are despairing. They are immobilized, depressed, apathetic, fatalistic. Their spiritual distress may surpass in urgency their injury or disease. Professionals with special training for such situations (e.g., social workers, psychologists, chaplains, ethicists, . . .) may need to be more central to the medical team’s care for these patients.
Defining/distinguishing ‘spirituality’ and ‘religion’:
I suggest that caregivers begin with this premise – i.e., that all individuals are more than the insights made possible through various empirical analyses. In the health care sphere, this premise implies that patients are more than potential or actual illnesses and accidents; professionals, more than highly skilled scientists/technicians. To consider this ‘more’, a vocabulary and a manner of discourse -- in addition to scientific/clinical language -- are required. I have found that most (perhaps all) individuals have, with varying levels of sophistication, such vocabulary and manner of discourse. Such vocabulary and manner of discourse disclose, in the most elemental and inclusive way, each individual’s spirituality. An individual’s spirituality reaches, shapes, and sustains his/her integrity (i.e., wholeness, oneness, character).
Defining/distinguishing ‘spirituality’ and ‘religion’:
I suggest that caregivers begin with this premise – i.e., that all individuals are more than the insights made possible through various empirical analyses. In the health care sphere, this premise implies that patients are more than potential or actual illnesses and accidents; professionals, more than highly skilled scientists/technicians. To consider this ‘more’, a vocabulary and a manner of discourse -- in addition to scientific/clinical language -- are required. I have found that most (perhaps all) individuals have, with varying levels of sophistication, such vocabulary and manner of discourse. Such vocabulary and manner of discourse disclose, in the most elemental and inclusive way, each individual’s spirituality. An individual’s spirituality reaches, shapes, and sustains his/her integrity (i.e., wholeness, oneness, character).
The definition of ‘spirituality’ that has worked well over the years for me in opening discussions of this subject with health care professionals is: ‘Spirituality’ has to do with the sort of person a patient is, with the basis upon which patients’ lives have integrity and balance. Patients reveal their spiritual identity when they share their core ideas and life values and when they explain how they sustain these ideas and values. Fear, loneliness, and guilt as well as happiness, contentment, and wonder are windows into a patient’s spirituality.
Some caregivers may question the absence of the word ‘God’ or a reference to a divine transcendence in this definition of spirituality. This definition represents an attempt to define spirituality so as to minimize the risk of eliminating individuals as ‘spiritual’ by definition. I strongly recommend against making either a reference to a divine transcendence or a claim of experience of/with a divine transcendence prerequisite to being considered ‘spiritual’. Instead, the transcendence that, in my judgment, is prerequisite to a fully inclusive approach to spirituality is the human sense/awareness of self (i.e., the ‘more’ about human beings for which empirical analysis/explanation alone does not account). I am proposing (1) that this ‘more’ is present in/with all patients and (2) that this ‘more’ is very relevant to empirically-driven health care professionals who are expected to assess their patients’ spiritual wellbeing. With this ‘more’ in common, patients experience and express their spirituality in ways special/peculiar to each one (including but not limited to those who interpret their spirituality in terms of experience of/with a divine transcendence).
The definition of ‘religion’ that has worked well over the years for me in opening discussions such as this one is: ‘Religion’ has to do with the way many patients experience and express their spirituality. They center their lives on worshipful devotion to ‘God’ as a mystery that transcends human beings and the world. They are encouraged in their religious communities to live this way through the study of sacred writings, the affirmation of core ideas and life values, the sharing of inspirational stories, and the celebration of special rituals.
Some caregivers may express concern that this definition of religion is decidedly institutional in wording. There are certainly less institutional ways to define/nuance ‘religion’. However, in order to meet the Joint Commission regulations for assessing patients’ spiritual wellbeing and in light of the likely assumptions many caregivers hold re ‘religion’, it seems to me that an institutional definition of religion accomplishes the primary objective of distinguishing religion as a subset of the larger phenomenon of spirituality.
I suspect that a significant number of physicians and their support staff as well as most of their patients are more familiar with the following association of spirituality and religion:
rather than:
‘Being spiritual’ subdivides into --
The definition of and approach to spirituality used in a hospital, in a clinic, and by a medical team need to be inclusive of all the patients for whom care is being delivered. Not all patients are religious. Not all patients are affiliated with a particular religion. Not all patients are members of any one sub-division of one particular religion. And crucial non-religious aspects of every patient’s spirituality are missed when ‘being spiritual’ is viewed as interchangeable with or a subset of ‘being religious’. Concerning these missed windows into a patient’s spirituality, here are some examples:
Some caregivers may question the absence of the word ‘God’ or a reference to a divine transcendence in this definition of spirituality. This definition represents an attempt to define spirituality so as to minimize the risk of eliminating individuals as ‘spiritual’ by definition. I strongly recommend against making either a reference to a divine transcendence or a claim of experience of/with a divine transcendence prerequisite to being considered ‘spiritual’. Instead, the transcendence that, in my judgment, is prerequisite to a fully inclusive approach to spirituality is the human sense/awareness of self (i.e., the ‘more’ about human beings for which empirical analysis/explanation alone does not account). I am proposing (1) that this ‘more’ is present in/with all patients and (2) that this ‘more’ is very relevant to empirically-driven health care professionals who are expected to assess their patients’ spiritual wellbeing. With this ‘more’ in common, patients experience and express their spirituality in ways special/peculiar to each one (including but not limited to those who interpret their spirituality in terms of experience of/with a divine transcendence).
The definition of ‘religion’ that has worked well over the years for me in opening discussions such as this one is: ‘Religion’ has to do with the way many patients experience and express their spirituality. They center their lives on worshipful devotion to ‘God’ as a mystery that transcends human beings and the world. They are encouraged in their religious communities to live this way through the study of sacred writings, the affirmation of core ideas and life values, the sharing of inspirational stories, and the celebration of special rituals.
Some caregivers may express concern that this definition of religion is decidedly institutional in wording. There are certainly less institutional ways to define/nuance ‘religion’. However, in order to meet the Joint Commission regulations for assessing patients’ spiritual wellbeing and in light of the likely assumptions many caregivers hold re ‘religion’, it seems to me that an institutional definition of religion accomplishes the primary objective of distinguishing religion as a subset of the larger phenomenon of spirituality.
I suspect that a significant number of physicians and their support staff as well as most of their patients are more familiar with the following association of spirituality and religion:
‘Being religious’ subdivides into --
‘Being spiritual’ (a favorable assessment according to the particular religion’s criteria)
‘Not being spiritual’ (an unfavorable assessment according to the particular religion’s criteria)
‘Not being spiritual’ (an unfavorable assessment according to the particular religion’s criteria)
rather than:
‘Being spiritual’ subdivides into --
‘Being religious’ (in experience and expression)
‘Being non-religious’ (in experience and expression)
‘Being non-religious’ (in experience and expression)
The definition of and approach to spirituality used in a hospital, in a clinic, and by a medical team need to be inclusive of all the patients for whom care is being delivered. Not all patients are religious. Not all patients are affiliated with a particular religion. Not all patients are members of any one sub-division of one particular religion. And crucial non-religious aspects of every patient’s spirituality are missed when ‘being spiritual’ is viewed as interchangeable with or a subset of ‘being religious’. Concerning these missed windows into a patient’s spirituality, here are some examples:
- a morning/evening walk
- participation in community/civic organizations
- a refreshing hobby (e.g., photography or gardening or hiking or . . .)
- participation in volunteer community service activities
- reminders of life-changing experiences
- travel opportunities
- inspiring music
- the company of a pet
- a thought-provoking book
- a favorite art gallery or museum
- social pleasures (e.g., a glass of wine or a pleasant dinner or a theater outing or a sports event)
- a special friend
‘Respect’ as the anchor for assessing patients’ spiritual wellbeing:
‘Respect’ is foundational to effective assessment of patients’ spiritual wellbeing. The root meaning of respect – i.e., ‘to look back or to look again’ -- is very vivid. There is very little benefit from attempting to assess a patient’s spiritual centeredness or spiritual distress if the professionals responsible for the patient’s care do not genuinely respect the patient.
‘Respect’ is foundational to effective assessment of patients’ spiritual wellbeing. The root meaning of respect – i.e., ‘to look back or to look again’ -- is very vivid. There is very little benefit from attempting to assess a patient’s spiritual centeredness or spiritual distress if the professionals responsible for the patient’s care do not genuinely respect the patient.
It should not be taken for granted that caregivers are predisposed to truly respecting their patients when assessing their patients’ spiritual centeredness or distress. Many caregivers have been born into and/or raised in fairly conservative families and communities. I was. In the religious and social setting into which I was born and in which I was raised, I remember being taught to doubt the motives and to avoid taking seriously the ideas of all others who differed with ‘us’. In time I came to see this instruction as instruction in disrespecting others. Variations on instruction in disrespecting others are implicit, if not explicit, to some degree in virtually all organized constituencies or spheres in our society (including the medical sphere).
‘Respect’ does not mean ‘cater to’. It does mean ‘take very seriously’. This clarification calls attention to the rather complicated process by which the attending physician and medical team work with the patient and family/friends in decision-making.
The following set of questions illustrates the skill physicians and other caregivers need in order to be fully informed about and respectful of patients who are experiencing spiritual distress:
- “What makes for a good day for you?” – with attention given to how ‘good’ is described
- “What are your difficult days like?” – with attention given to how ‘difficult’ is described
- “Do your good days help you make it through your difficult days?” – with attention given to indications of how firm a ‘yes’ is and whether the good:difficult ratio is diminishing
- “Do you more often find yourself waking up in the morning hoping for a good day or hoping not to have a bad day?” -- with attention given to how encouraged or discouraged the patient is
- “What do you want me to know as I and the team consider how best to take care of you?" – with attention oriented toward acceptable or unacceptable outcomes rather than toward management plan details
- “What outcomes do you want to keep fighting for?” – with attention drawn to feasible outcomes
- “Are you concerned that your illness will interfere with your participation in any activities or events in the near future that are especially important to you?” – with attention given to what demands these activities or events would make on the patient, to how feasible it is for the patient to participate, to what condition the patient hopes to be in at the time of these activities or events
- “Do you have any questions or worries that are hard to talk about with your family or friends?” – with reassurances that such can be discussed with you in complete confidence
- “Patients sometimes tell me they find themselves thinking ‘that would be worse than dying’. Have you had this thought?” – with attention given to what such conditions would be
Adding to patient care the responsibility of assessing patients’ spiritual wellbeing increases the likelihood that caregivers will often be in a position to share their core ideas and basic values with patients. Healthcare professionals who interpret the responsibility to assess their patients’ spiritual wellbeing as liberty to look for opportunities to impress their own core ideas and basic values on patients risk failing to respect or to be truly present with their patients. Pressing their core ideas and basic values may lead them to prejudge the spiritual wellbeing of patients whose core ideas and basic values differ from their own. Their attention span may narrow. Their diagnosis and/or management may be adversely influenced. Also, considerable diversity regarding ‘spirituality’ and ‘religion’ is usually found among the numerous professionals involved in a patient’s care. Liberty to impress one’s own core ideas and basic values on patients would not be restricted to the attending physician. Instead, all the professionals involved in a patient’s care -- including consultants, residents, medical students, nurses, social workers, chaplains, social services personnel, et al -- could assume the same liberty, thus potentially putting patients in confusing as well as insecure situations. In order to guard against disrespecting patients and weakening their trust, caregivers should limit the way they share their core ideas and basic values with patients to discussions (1) they will summarize in the patient’s medical record and (2) the medical team will consider on rounds to be part of the patient’s care.
