Open access peer-reviewed chapter

Spiritual Distress and Depression in Palliative Care

Written By

Teresa Velosa

Submitted: 14 July 2023 Reviewed: 15 September 2023 Published: 03 November 2023

DOI: 10.5772/intechopen.1003235

From the Edited Volume

Palliative Care - Current Practice and Future Perspectives

Georg Bollig and Erika Zelko

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Abstract

The Spirit is a movement that entails the five dimensions of the Human being—intellectual, physical, social, emotional, and spiritual. Spiritual distress (SD) and depression are related to spirituality and are most prevalent in palliative care (PC) settings. SD and depression have a deep connection to the inner energy of the Human being. Both can affect and be affected by all the five dimensions of the Human being and negatively impact the quality of these patients’ lives. Men seek meaning in life (MIL), and a lack of this dimension is common in SD and depression. Nevertheless, although closely interrelated, SD and depression are distinct diagnoses. There seems to be evidence of having precise clinical indicators and different pharmacological and non-pharmacological therapeutic approaches. Patient-centred approaches should be the gold standard practice at this particularly vulnerable moment.

Keywords

  • spiritual distress
  • depression
  • spirituality
  • palliative care
  • person-centred care

1. Introduction

Patients facing chronic and life-threatening diseases have a high probability of having psychopathology. In PC settings, the prevalence of SD ranges from 10 to 63% [1, 2, 3, 4, 5, 6, 7] and depression from 5 to 50% [8, 9, 10, 11].

SD and depression are closely interrelated and share some characteristics regardless of cultural traditions: at the bodily level, symptoms of insomnia, pain, and fatigue; at the emotional level, a sense of guilt, fear, anger, anxiety, loneliness, alienation, lack of confidence, and despair; at the existential level, experiencing a lack of hope, a lack of MIL, and a lack of serenity [12, 13, 14].

Notably, suffering is challenging for all health care teams caring for patients, and their families, with progressive diseases and impending death. This topic will provide an overview of the clinical indicators of SD and depression towards its differential diagnosis and the setting of proper treatment, whether pharmacological or non-pharmacological.

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2. Background

2.1 The dimensions of the human being

Edith Stein’s phenomenological-anthropological work describes the Human person as formed by a material part (Körper), a spiritual part (Leib) through which the empathy phenomenon occurs and a primordial metaphysical part. In this regard, the Human being is a ‘body-soul-Spirit’ conception [15].

Eastern’s medicine holistic ‘body-mind-Spirit’ approach has a long tradition. It considers health a balance between individual and environmental dimensions. They take into account a multitude of conceptions, such as the yin and the yang, ‘the five internal elements (metal, wood, water, fire, and earth), the six environmental conditions (dry, wet, hot, cold, wind, and flame), other external sources of harm (physical injury, insect bites, poison, overeat, and overwork), and the seven emotions (joy, sorrow, anger, worry, panic, anxiety, and fear)’ ([16], pp. 261–2). They pay attention to the patient rather than to isolated symptoms, using exercise, meditation, benevolence, art, and bonding, beyond many specific therapies, to integrate the physical, emotional, and spiritual. They believe that letting go (excess emotions), the spirits (values, life philosophy, and beliefs) and the environment (diet, weather, exercise) are crucial in restoring harmony and health [16].

Western medicine traditionally focuses mainly on the disease. However, since 2013, the WHO Health construct considers the person’s physical, mental, social, and spiritual dimensions [17]. PC, and Primary Health Care, are leaders in the holistic vision of care. Addressing the whole dimensions of the patients promotes joyful and healthy living and, ultimately, a peaceful, meaningful dying experience.

2.2 The spirit

The word spirit, in English, comes from the French ‘esperit’, which comes from the Latin ‘spiritus’, which means breath, vigor, and courage. It is the vital principle animating Humans and, in some views, all living creatures [18]. It differs from the Latin ‘anima’, whose etymological meaning is also breathing but evolved to a concept named soul [18]. Some recognize the soul as the spiritual heart. It has the attributes of consciousness, affectivity, intellect, memory, will, and personality [19]. Some use the terms mind and soul interchangeably; others claim that the mind is part of the soul; to others, the soul does not exist, but only the mind is tangible [20].

We can describe Spirit as something real though immaterial that transcends the body-soul/body-mind dichotomy. Some call it Nature, Energy, God, Budahh, Allah and others just Consciousness or a Superior Being. It is within and beyond the person. Man’s awareness of a spiritual world is millenary and a means of coping with the distress and tribulations of his life. It is a resource for strength, guidance, and courage in life’s journey [21].

In 1988, Beck, Rawlins, and Williams conceptualized the Spirit as the core aspect of the person permeating its five dimensions (physical, social, emotional, intellectual, and their Spirituality) (Figure 1). The Spirit is perceptible in the thoughts, behaviors, and language [22, 23].

Figure 1.

A conceptualization of the dimensions of the Person as Beck, Rawlins, and Williams (adapted).

Viktor Frankl’s extensive study, inclusive during the Second World War concentration camps, made him consider Man a spiritual being. He stated that despite the terrible surroundings, some sensitive people could reach high levels of spiritual life and spiritual freedom [24].

2.3 What is spirituality

A set of three health consensus conferences, held in 2009, 2012, and 2013, established the basis for defining spirituality as ‘a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred. Spirituality is expressed through beliefs, values, traditions, and practices’ ([25], p. 646).

Spirituality has three axes: intrapersonal (with oneself), interpersonal (with others - persons, nature, arts), and transpersonal (with a superior transcendental dimension) [26]. It is a multidimensional construct that embraces all settings and cultures. Spirituality comprehends the search for purpose and meaning through religion or other paths. It may include arts, relationships with nature, others or the sacred, values, beliefs, prayer, faith, reason, and compassion [25, 27]. Therefore, as a universal human capacity, spirituality encompasses believers and agnostics [28].

In illness situations, questions such as ‘Why me? What is the meaning of my suffering?’ may arise. In these moments, the sense of connectedness with oneself, others or the sacred can be a means of positive or negative spiritual coping (SC). Positive SC gives a sense of a benevolent worldview and increases gratitude, hope, meaning, purpose, and peace [29]. Negative SC is related to higher levels of distress, anger, depression, uncontrollable pain, and other symptoms [30, 31]. Spirituality can significantly impact the individual’s psychosocial and physical health and overall quality of life (QOL) [32].

2.4 PC

In the 1950s, PC began with the hospice movement, propelled by Dame Cicely Saunders’s work and an increasing consciousness of unaddressed suffering and deprivation amongst cancer patients dying at home [33].

‘PC is an approach that improves the QOL of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment, and treatment of pain and suffering, including psychosocial, spiritual, and existential suffering as well as physical pain’ [34]. Outcomes are optimized when PC begins early after the diagnosis, is delivered at the same time as curative or disease-modifying treatment, and is carried out until death [35].

PC is based on the patient’s needs, not on the patient’s prognosis. The World Health Organization advocates that PC should include assessing and managing pain, physical, cultural, social, psychological, and spiritual needs [34]. The gold standard is teamwork, dignity, compassionate, and person-centred care [27].

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3. Definitions

3.1 Spiritual well-being (SWB)

Spirituality is one of the eight domains of quality supportive care for the dying [36], and SWB is a desired outcome for spiritual interventions in PC patients [25]. It comprises the positive aspects of spirituality, such as finding purpose and MIF (even though diseases and struggles might occur), a sense of connectedness (with ourselves or significant others), the capacity to bliss with art, music, literature, and nature, and a transcendent feeling that we are not alone, that we are nurtured and guided by a power greater than oneself [12, 21].

Although we might consider there are religious, existential, and non-spiritual individuals who can value or not the aspects of religion, faith, and a sense of peace and MIL [28, 37], they all experience spiritual cycles of development and depending on their spiritual growth, different levels of SWB [21].

SWB impacts health’s physical and emotional aspects [38, 39, 40]. Research indicates a positive link between SWB, life expectancy, and QOL [41, 42]. SWB is a buffer to anxiety [43], depression [43, 44], hopelessness, suicidal ideation, and the desire for hastened death [45, 46]. Indeed, a crucial study found significant solid negative correlations between SWB and desire for hastened death, hopelessness, and suicidal ideation, being the most robust predictor and beyond that of depression [46].

3.2 SD

Distress results from potentially harmful psycho-biological changes in the human body (such as increased heartbeat, dyspnea, and elevated blood pressure) caused by stressors and unsuccessful coping mechanisms. Distress can be physical, social, emotional and spiritual [47, 48].

SD is ‘a state of suffering related to the impaired ability to experience MIL through connectedness with self, others, world or a Superior Being. This definition contains the attributes of SD: suffering, impaired spirituality, contrary to SWB, and related to MIL’ ([12], p. 6). This SD definition is a North American Nursing Diagnosis Association-International (NANDA-I) nursing diagnosis [49], supported by the 2018 National Coalition for Hospice and PC guidelines [35], and is under the Puchalski et al., 2013 spirituality definition [25]. Subsequently, through a validation study in cancer patients, ‘expresses suffering’ was the defining characteristic (DC) (Table 1) with the highest sensitivity value. Of all the reminder SD-DC, ‘lack of MIL’ had the highest specificity value. We might conceptualize SD as a state of suffering related to a lack of MIL [2].

  • Anger behaviors

  • Crying

  • Decreased expression of creativity

  • Disinterested in nature

  • Dysomnias

  • Excessive guilt

  • Expresses alienation

  • Expresses anger

  • Expresses anger towards power greater than self

  • Expresses concern about beliefs

  • Expresses concern about the future

  • Expresses concern about values system

  • Expresses concerns about family

  • Expresses feeling abandoned by power greater than self

  • Expresses feeling of emptiness

  • Expresses feeling unloved

  • Expresses feeling worthless

  • Expresses insufficient courage

  • Expresses loss of confidence

  • Expresses loss of control

  • Expresses loss of hope

  • Expresses loss of serenity

  • Expresses need for forgiveness

  • Expresses regret

  • Expresses suffering

  • Fatigue

  • Fear

  • Impaired ability for introspection

  • Inability to experience transcendence

  • Maladaptive grieving

  • Perceived loss of MIL

  • Questions identity

  • Questions MIL

  • Questions meaning of suffering

  • Questions own dignity

  • Refuses to interact with others

Table 1.

DCs of SD nursing diagnosis.

Source: ([49], p. 460).

SD has been a nursing diagnosis since 1978. SD nursing diagnoses reported in PC patients [1, 2, 6] undertook three main steps: a clinical interview and identification of SD-DC by the health professional (‘expresses lack of MIL’ and ‘expresses suffering’ were necessary criteria); after the interview, the answer to the question ‘Are you in SD?’ (a positive response was a required condition); application of a SWB questionnaire (SD diagnosis required a score lower than the cutoff value defined for SWB). Some of the SWB questionnaires used are the Functional Assessment of Chronic Illness Therapy—SWB Scale (FACIT-Sp) [50] and the SWB Questionnaire (SWBQ) [51]. One study considered a practical resource in diagnosing SD scoring low (<3) in the SWBQ and the patient self-diagnosis as having SD [52]. Assessing SD should be cautious and patient-centred, respecting each one’s values and beliefs. Therefore, health care professionals should be trained to be competent and compassionate in delivering spiritual care [27].

In times of serious illnesses, unmet spiritual needs [53], such as an impaired ability to pray, experience meaning and purpose, love and belonging, hope, peace, and gratitude [54], and inadequate SC strategies [53, 55, 56, 57] can lead to a state of SD [53]. Additionally, SD can lead to increased physical and emotional symptoms and health service utilization [53]. Patients with SD are more likely to be younger and have financial distress, pain, drowsiness, nausea, anxiety, and depression [4, 5]. In 2016, Velosa et al., in a study carried out in primary health care with PC patients, found an association between SD and alcoholism and between SD and traumatic life events [6]. Although there are literature references that link spirituality and alcoholism in the PC field [58], more research is necessary on this particular issue. As for traumatic life events, NANDA-I describes traumatic life events as risk populations to experience SD [49].

Unfortunately, some evidence shows that those with SD are less likely to ask for chaplaincy help [59]. Also, some patients may feel uncomfortable discussing this subject unless the health professional launches the issue [60]. As ‘SD should be treated with the same intent and urgency as treatment for pain or any other medical or social problem’ ([27], p. 891), PC professionals are urged to impeccably identify the patient’s spiritual needs and screen for SD.

Assisting SD seems to allow spiritual/existential growth at the end of life [61, 62], improve the patient’s cooperation with shared medical decisions [63], provide less aggressive care at the end of life [64], and have a role in pain control [65]. Addressing SD allows the patient to be regarded as a whole, not just a disease, and is a means to offer dignity and quality of care [21].

3.3 Depression

Mental health issues are frequent in the scope of those suffering from severe and life-threatening diseases, and depression is the most common [14]. Patients facing PC can be suffering from unrelieved pain, the burden of their symptoms, loneliness, and financial problems; they can be grieving the loss of their self-sufficiency, autonomy, self-image, or the shift of their roles within their family/ friends/community/work; they might be experiencing spiritual concerns, connectedness impairments, and unresolved complex psycho-social-spiritual issues. Many of them experience disease progression, treatment failure, and approaching death.

Sadness, fear, and distress are normal reactions in those with advanced diseases, but if the person has the necessary background, support, courage, and coping skills, depression may not occur. On the other hand, depression is more likely to occur if risk factors are present (Table 2). Amongst these, a history of depression is a significant risk factor [72], although de novo major depressive episodes occur in many cases [73].

Physical:
  • Functional disability

  • Undermanaged pain control

  • Poor symptom control

  • Malnutrition, thiamine, vitamin B12, and folate deficiencies

  • Cognitive decline

Socioeconomic:
  • Poor social support

  • Lack of intimate relationships, isolation

  • Financial distress

Medications and treatments:
  • Corticosteroids

  • Opioids

  • lnterleukin-2

  • Interferon

  • Amphotericin

  • Radiation therapy (to the brain or head and neck)

  • Chemotherapy agents (vincristine, vinblastine, asparaginase, intrathecal methotrexate, paclitaxel, docetaxel)

  • Hormonal agents (cyproterone, leuprolide, and tamoxifen)

  • Oral contraceptives

  • H2-blockers

  • Metoclopramide

  • Sedative-hypnotics

  • Antihypertensives (propranolol, reserpine, and methyldopa)

Neoplasms:
  • Head and neck cancer

  • Pancreatic cancer

  • Brain tumors

  • Brain metastasis

  • Carcinomatosis

  • Lung cancer

  • Lymphoma

Cancer-related:
  • Hypercalcemia

  • Hypercortisolism (pituitary tumors)

  • Tumor-generated toxins

  • Neuroendocrine changes/paraneoplastic syndromes

  • Immunologic reactions

Diseases:
  • Terminal or advanced illnesses

  • HIV/AIDS

  • Hypothyroidism

  • Alzheimer’s disease

  • Parkinson’s disease

  • Stroke

  • Huntington’s disease

  • Multiple sclerosis

Individual and family history:
  • Past personal history of depression

  • Family history of depression

  • Alcoholism family history

  • Substance abuse

  • Recent negative life events

  • Pessimism, neuroticism, low self-esteem, worried, stress-sensitive, obsessive, unassertive, and dependent personality traits

  • Early loss, disturbing, hostile or negative environment during childhood

Miscellaneous:
  • Non-compliance with treatments

  • Requests for assisted suicide

  • Denial (of a short life expectancy)

  • Loss of MIL

  • Race (less common in black men)

  • Female gender

  • Younger age

Table 2.

Risk factors for depression in PC.

Sources: Refs. [13, 14, 66, 67, 68, 69, 70, 71].

Depression has devastating effects on the patient and their family QOL as it affects the capacity to interact with others, concentrate and resolve practical matters, and feel peace [13]. Also, there is a close bidirectional association between depression and physical symptoms [74], including pain [75], in PC patients. Suicidal ideation is associated with uncontrolled pain [76], meaning pain control is a primary concern when treating depression.

Additionally, depression is associated with incapacity [77], disfigurement [77], poorer prognosis, higher mortality [78, 79], increased costs [80], treatment withhold or withdrawal requests [14], higher requests to hasten death, and higher suicide rates in the terminally ill [81, 82]. Nevertheless, a critical study showed a strong correlation between depression and a desire for hastened death in participants low in SWB (r = 0·40, p < 0·0001) but not in those high in SWB (r = 0·20, p = 0·06) [46].

Self-transcendence seems to be directly and negatively related to depression [83]. Self-transcendence is a psycho-social-spiritual force that expands the self from its ego. When Humans transcend the limitations and boundaries of the ego, they release the entire manifestation of the Spirit sharing feelings, creating personal bounds, humor, laughter, enjoyment, and self-acceptance [15, 83].

Brief screening measures for depression in the terminally ill are easy to apply and avoid burdening these patients with extensive questionnaires, as they are already commonly distressed. The simple question ‘Are you depressed?’ or two questions (low mood and low interest) perform well in PC patients [84, 85, 86]. A full assessment and psychiatric clinical interview of the patient is then necessary.

Depression diagnostic criteria most widely accepted are the Diagnostic and Statistical Manual of Mental Disorders (DSM), presently in its fifth edition [87]. These include disruptive mood dysregulation disorder, major depressive disorder, persistent depressive disorder (dysthymia), substance/medication-induced depressive disorder, depressive disorder due to another medical condition, other specified depressive disorder (such as short duration or with incomplete criteria), and unspecified depressive disorder (such as that diagnosed in emergency room settings when incomplete data are available). These last two are sometimes named minor depression as they do not complete the criteria for major depression (just two to four items). However, in the settings of PC, receiving a severe diagnosis can lead to an adjustment disorder with depressive symptoms (onset of emotional or behavioral symptoms within 3 months from a stressor, if out of proportion towards the situation and not just a natural grieving) [85, 87].

The standard features of all depressive syndromes are sad, empty, or irritable mood with somatic or cognitive symptoms that disrupt everyday life [87]. Anhedonia and the absence of positive affect are specific to depression [76].

In diagnosing depression in PC patients, there is a need to rule out a substance/medication-induced depressive disorder whose symptoms can occur after substance onset and withdrawal (included substances are: alcohol, phencyclidine, other hallucinogen, inhalant, opioid, sedative, hypnotic, or anxiolytic, amphetamine, or other stimulant and cocaine). Also, excluding a depressive disorder due to another medical condition is warranted, particularly in these severely ill patients with multiple comorbidities. Medical conditions possibly related to depression are stroke, Huntington’s disease, Parkinson’s disease, Cushing’s disease, and hypothyroidism (Table 1). A detailed history of past depressive syndromes, family history, and time frames for the onset and remission of the depressive symptomatology is vital [87].

Disrupted mood dysregulation disorders present severe, persistent irritability with temper outbursts. The core features of persistent depressive disorder (dysthymia), which is chronic low-grade depression, are at least 2 years long, no more than two-month periods without depressed symptoms, and two or more of the six following symptoms: poor appetite or overeating, sleep disturbances, fatigue, low self-esteem, lack of concentration, and hopelessness [14, 87].

Major depression is the classical picture of depression. Criteria include loss of interest or pleasure (anhedonia) or depressed mood for at least 2 weeks and four additional symptoms of the following seven: significant weight loss or gain; insomnia or hypersomnia; psychomotor agitation or retardation; fatigue or loss of energy; feelings of worthlessness or inappropriate guilt; diminished ability to think or concentrate, or indecisiveness; recurrent thoughts of death or recurrent suicidal ideation (passive or active) [87].

However, the four somatic symptoms included in DSM criteria, fatigue, weight loss, sleep disturbances, and lack of concentration, can be caused by the underlying disease or the treatment side effects in those with cancer or chronic, severe illnesses. Therefore, Endicott replaced these four criteria with alternative cognitive symptoms: brooding or self-pity or pessimism; tearful or depressed appearance in face or body posture; social withdrawal or decreased talkativeness; lack of reactivity or non-reactive mood or inability to be cheered [88]. Although the Endicott approach is used mainly in research, it is imperative in PC as it values signs of depression, sometimes only detected by relatives and close ones, as patients might be reluctant to show their emotional suffering and try to be positive in the presence of health care providers. Signs include irritability, flat affect, hunched shoulders, looking down, crestfallen appearance, slowed thought and movement, careless hygiene and clothing, negative expressions of sadness, and non-compliance with treatment [13, 88, 89].

Additionally, dysphoric mood, brooming/self-pity/pessimism, and loss of interest/pleasure are prominent features of depression in PC [8]. In the terminally ill, feelings of hopelessness, helplessness, worthlessness, guilt, lack of pleasure, and suicidal ideation (passive or active) strongly support depression diagnosis and are regarded as appropriate clinical hallmarks of depression [89, 90].

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4. Prevalence of SD and depression in PC

4.1 Prevalence of SD in PC

The prevalence of SD is still a pursued goal, as research in this area is limited, and diagnostic criteria diverge within the research literature.

A scoping review in inpatient settings found a prevalence of SD between 10 and 63% [7]. Studies using questionnaires found a prevalence of depression of 44% in cancer PC patients [4, 5]. Studies using structured interviews showed SD prevalences of 28% in patients with end-stage renal disease undergoing hemodialysis [91] and 23% in cancer patients with ongoing oncologic treatment [3]. Other studies using a three-part methodology (clinical interview, the patient’s opinion as having SD, and a SWB questionnaire) revealed SD prevalences of 23% in palliative patients followed in a primary care setting [6], 38.6% in women with breast cancer [1], and 40.8% in cancer patients undergoing chemotherapy [2].

4.2 Prevalence of depression in PC

As psychopathology is common in those facing serious and life-threatening diseases, depressive syndromes attain many PC patients. However, there are no valid, specific criteria for this population, and there may be marked differences depending on the diagnostic criteria.

The most standard method used in the research field to diagnose depression is the Structured Clinical Interview for DSM based on the DSM Diagnostic Criteria [87], followed by Endicott’s Criteria [67, 88]. A study on a sample of PC patients found that 9.2% had depression according to the DSM-4 and 13.8% with Endicott’s [8].

A meta-analysis based on studies using only psychiatric interviews provided a prevalence of all types of depression combined of 24.6% in PC settings and 20.7% in oncologic and hematologic settings [92].

Within a systematic review, 7 to 49% of a subgroup of PC cancer patients met depression diagnosis. This systematic review considered only studies that administered diagnostic interviews and met specific quality research criteria [11].

A median prevalence of depression of 29% (ranging from 16 to 50%) was revealed in a systematic analysis in inpatients with advanced diseases when all depressive disorders were included, such as major and minor depression, dysthymia, and depressive adjustment disorders, as measured by questionnaire. The Hospital Anxiety and Depression Scale (HADS) [93] was the most widely used assessment and accounted for the result. However, this systematic analysis also reported a median of 15% for major depression (ranging from 5 to 26%) when using psychiatric interviews [10].

4.3 Co-occurrence of SD and depression in PC

In two studies, 13% of adult PC patients followed at primary care had simultaneous SD and depression [6] and 15.1% in a study with patients admitted to a geriatric rehabilitation centre [92]. More research is desirable on this issue.

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5. SD and depression differential diagnosis

Spirit, the core aspect of Humans [21, 23], affects all the Person dimensions (Figure 1). However, in this conceptualization, SD and depression, although interrelated, belong to different facets [94], the ‘spirituality’ and the ‘emotional’.

Expressions such as ‘Why me?’, ‘What is the point?’, or ‘Why can’t I find a point in living?’ were frequently mentioned in Swinton’s qualitative work on depression [23]. Also, a sense of purposelessness and perceived loss of a relationship with God or a higher power were indicative of SD. He stated, ‘Depression is a profound spiritual illness that digs into the heart of a person’s spirit and forces them to face experiences of meaninglessness and hopelessness’ ([23], p. 167).

MIF is a core aspect of Human life [24] and spirituality [12, 25, 95, 96]. PC research showed a negative correlation between MIF and depression, anxiety and the wish to hasten death and a positive correlation with life satisfaction [97]. Also, MIL is protective against psychological distress at the end of life [98]. In a study, women with breast cancer with higher levels of meaning and peace had significantly lower depressive symptoms at 6 months [99]. Another vital research with adults seeking treatment for mental illness revealed a ‘significant negative association between depression symptom severity and MIF was observed at lower but not the highest levels of spirituality. In the presence of elevated depressive symptomatology, those participants who reported high levels of spirituality reported comparable levels of MIF to those without elevated depressive symptomatology’ [100].

Spirituality can significantly impact the individual’s psychosocial health [32]. However, depression relates to the emotional field, diverging from SD [94] and has precise medical diagnostic criteria [87, 88]. Depression can co-occur or mimic SD, as they share symptomatology.

SD is the opposite of SWB [12, 101], when applying the total concept of each term. In reality, there are gradation levels of SD and SWB. But this is true for almost every construct, such as anxiety or depression. We can say a person is anxious when perceiving a future threat but only has anxiety disorder when the anxious state is out of proportion to the event and significantly impacts everyday life and performance [87]. We can say a person is sad because something negative happened and is a normal reaction, but we say a person is depressed if the sadness is out of proportion to the event and impairs daily functioning [87]. Applying this reasoning, we can hypothesize that experiencing SD-DC (Table 2), such as anger (towards oneself/others/God), lack of hope or serenity, can be expected as part of the Human spiritual journey of growth and transformation; however, there is a point, above which, it harms the person causing a state of suffering. At this stage, we might diagnose SD.

A cross-sectional study in primary health care with PC adult patients showed a link between depression and the SD-DC ‘expresses lack of MIF’ but not with the SD-DC ‘expresses suffering’ [6]. More research is desirable to address this issue.

The standard features of all depressive syndromes are sad, empty, or irritable mood with somatic or cognitive symptoms that disrupt everyday life [87]. Anhedonia and the absence of positive affect are specific to depression [76]. In the terminally ill, after impeccable pain control, worthlessness, guilt, and suicidal ideation strongly suggest depression [89, 90]. The core features of SD are SD-DC [49], including a perceived loss of MIF and the expression of suffering [2, 49]. SD and depression diagnoses are clinical and can only be ascertained through a client-therapeutic relationship and complete anamnesis. Questionnaires can be helpful for screening or corroboration purposes.

Spiritual suffering seems to be a key component in the differential diagnosis between SD and depression and might be relieved with anxiolytic medication (instead of antidepressants). In PC patients, anger, grief, regret, the need for forgiveness, receiving terminal care, and relevant traumatic life events might indicate SD [2, 6, 49]. On the other hand, depression is based on somatic or cognitive symptoms, where antidepressive medications play a crucial role [90]. SWBQ, FACIT-Sp, and HADS scales are effective screening tools [50, 51, 52, 60, 93].

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6. SD treatment

Spiritual care embraces all religious, existential, cultural, and philosophical backgrounds. All health care team members at all levels of care are responsible for delivering spiritual care as they address the biopsychosocial-spiritual model of holistic care [58, 102], with complete respect towards the patient’s and family’s beliefs, traditions, values, and practices [25, 35].

Spiritual care comprises spiritual screening, history, and assessment. Spiritual needs, strengths, and resources must be registered in the patient’s health records [35]. Whenever a patient presents spiritual issues but no SD, non-chaplain clinicians can provide generalist spiritual care [60].

Following Stein, being Empathy an extent of Leib (soul), Frank stated that a genuine client-therapist relationship based on Empathy is therapeutical [103]. The healing process is complex and simple at the same time. Healing from within requires the healer to be genuine and non-judgemental, putting their reactions and prejudices aside to be with the patient compassionately and respectfully. However, the healer also needs to nurture their spirituality. Training in spiritual care and mindfulness clinical congruence is desirable for all health care professionals [104]. Primarily, impeccable control of pain and other symptoms is necessary [34].

Also, addressing the patient’s spiritual, cultural, and emotional needs, reinforcing positive spiritual/religious coping mechanisms and spiritual strengths (such as the use of spiritual/cultural symbols and practices and support from the religious leader and religious community), meaning-centred psychotherapy, dignity-centred psychotherapy, legacy creation, art and music therapies, yoga, and mindfulness meditation, are therapeutical [60].

SD diagnosis demands spiritual assessment from a board-certified chaplain (BCC) trained to deal with spiritual and emotional issues and a spiritual care plan with interventions and expected outcomes discussed within the PC team. BCC is part of the PC team and trained in PC. Referral to the nearest PC team might be necessary whenever no BCC is available [60, 105].

If the SD diagnosis is uncertain or the patient has spiritual concerns such as anger (towards God or others), sense of abandonment (by God or others), need for forgiveness and reconciliation, concerns about death and the afterlife, and conflict between religious beliefs and recommended treatment, amongst others, referral to a BCC is indicated [27, 102].

Referral to mental health care can also be required [60]. Although medication is not the core treatment of SD [21], it can be a supportive measure until the patient overcomes SD. In that case, anxiolytics seem more prone to relieve SD than antidepressive medication [6].

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7. Depression treatment

The first step in treating depression is relieving uncontrolled symptoms, particularly pain [71, 74, 75, 86], providing social support, and addressing psychological and spiritual issues such as anger related to diagnostic delay and SD [90].

Terminally ill patients with depression benefit from holistic, patient-centred, and compassionate care. Psychotherapies include dignity therapy, meaning-centred psychotherapy, therapeutic life review, and cognitive behavior therapy. If the diagnosis is uncertain, there is suicidal ideation (passive or active), the patient who requests assisted suicide or euthanasia, is psychotic or unresponsive to therapy, there is an indication for a mental health specialist referral [67, 90].

Antidepressants effectively treat depression in PC patients. As PC patients have a short life expectancy, especially in the terminally ill, drugs with rapid onset of action are helpful, such as psychostimulants which have shown to be effective in PC patients [106]. Drug choice also depends on the duration and severity of symptoms, comorbidities, side effects, possible drug-drug interactions, and the availability of liquid or orodispersable formulations [67, 90].

Although there are no guidelines on first-choice antidepressants in PC, selective serotonin reuptake inhibitors (SSRIs) are well tolerated, have fewer side effects and drug-to-drug interactions, and are usually the first choice. Start with 50% of the standard dose and then titrate based on the efficacy and side effects balance. Psychostimulants benefit patients with fatigue and depressive patients weeks from dying or with severe depression. Psychostimulants are usually well tolerated, used alone or with tricyclics or SSRIs until these begin to work. It is advisable to know well and use one medication of each class of antidepressants. Table 3 summarizes the advantages and disadvantages of each antidepressant [67, 71, 90].

Drug classAdvantagesSide effects & disadvantages
Antidepressant
SSRIs
  • Well tolerated

  • A wider margin of safety

  • Common: headache, restlessness, anxiety, agitation, headache, sexual dysfunction, GI symptoms (diarrhea and nausea), insomnia, and activation (mainly with fluoxetine and sertraline)

  • Rare: SIADH, increased bleeding risk, extrapyramidal symptoms, serotonin syndrome (in combination with other serotonergic drugs)

Fluoxetine
  • Inhibits P450 (CYP): possible DDIs

  • Long half-life

Paroxetine
  • Fewer active metabolites

Fluvoxamine
Sertraline
  • Fewer DDIs than the other SSRIs

Citalopram
Escitalopram
TCAs
  • Useful in neuropathic pain

  • Sedating and anti-ACh effects, including dry mouth, blurred vision, constipation, urinary retention, tachycardia, orthostasis, impaired memory, confusion, hallucinations or delirium, cardiotoxicity

Desipramine
  • Less anti-ACh than other TCAs

Nortriptyline*
  • Sinus tachycardia, severe angina, and an increase in ventricular ectopy

Imipramine*
  • Exacerbate the sedating effects of other medications

Amitriptyline
Doxepin
SNRIs
  • Similar to SSRIs plus increased BP

Venlafaxine
  • Generally well tolerated

  • The use in terminally ill has not been studied

Atypical antidepressants
Mirtazapine*
  • Effective for improving depression, QOL, insomnia, nausea, anxiety, appetite, and weight gain

  • Sedating

  • Risk of serotonin syndrome (if co-administration with SSRIs)

Trazodone
  • Good for insomnia

  • Sedating

  • Analgesic effects

  • Priapism

Nefazodone
  • Should not be used (liver failure)

Bupropion
  • Energizing effects

  • Seizures, insonmia, anxiety, decreased appetite

  • Avoid in Child-Pugh C cirrhosis

Mianserin
  • Adjuvant analgesic properties

  • Effective in cancer patients

MAOIs
  • Large number of DDI

Triazolobenzodiazepine
Alprazolam
  • Mildly effective antidepressant and anxiolytic

Psychostimulants
  • Rapid onset of action

  • Agitation, insomnia, tremor, anxiety, dry mouth, anorexia, headache, nausea, diarrhea, seizures psychosis, arrhythmia, nightmares

  • Cardiac decompensation (in older patients with heart disease)

  • Rarely: hallucinations, delirium

  • Energizing

  • Improve cognitive impairment

  • Useful in dysphoric mood associated with opioid-related sedation, appetite, weakness, and fatigue

  • Promote a sense of well-being

Dextroamphetamine, Methylphenidate
Modafinil
  • Less sympathomimetic effects

Table 3.

Antidepressants advantages and disadvantages in palliative medicine.

No efficacy data on chronic kidney disease; BP, blood pressure, CYP, cytochrome; DDI, drug-drug interactions; GI, gastrointestinal; MAOIs, monoamine oxidase inhibitors; SIADH, syndrome of inappropriate antidiuretic hormone secretion; SNRIs, serotonin and norepinephrine reuptake inhibitors; SSRIs, selective serotonin reuptake inhibitors; TCAs, tricyclic antidepressants.


Sources: Refs. [67, 71, 107, 108, 109].

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8. Conclusions

SD and depression are common diagnoses in PC patients and share common symptoms. Both have a substantial impact on the patients and their families QOL. However, although interrelated, SD and depression belong to different dimensions, ‘spirituality’ and mental, respectively. Depression, in PC, should be diagnosed based mainly on cognitive symptoms, and SD diagnosis relies on a state of suffering related to a perceived loss of MIL. Impeccable pain and symptom control are mandatory for SD and depression. Spiritual care is fundamental in treating SD, whereas pharmacologic and psychotherapy are united in treating depression.

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Conflict of interest

The author declares no conflict of interest.

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Appendices and nomenclature

BCC

board-certified chaplain

DC

defining characteristic

DSM

diagnostic and statistical manual of mental disorders

FACIT-Sp

functional assessment of chronic illness therapy—spiritual well-being scale

HADS

hospital anxiety and depression scale

MIL

meaning in life

NANDA-I

North American Nursing Diagnosis Association-International

PC

palliative care

QOL

quality of life

SC

spiritual coping

SD

spiritual distress

SSRIs

selective serotonin reuptake inhibitors

SWB

spiritual well-being

SWBQ

spiritual well-being questionnaire

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Written By

Teresa Velosa

Submitted: 14 July 2023 Reviewed: 15 September 2023 Published: 03 November 2023