Which of the following questions would best assess a patients level of connectedness

24. What are indicators of spiritual or existential distress?

When facing a life-threatening illness, individuals can experience great distress in psychological, spiritual, and existential domains. Indicators of existential or spiritual suffering include statements of meaninglessness, hopelessness, and guilt. Helpful responses to spiritual or existential distress are statements that acknowledge the pain, provide a nonjudgmental supportive presence, and bear witness to the patient and family. Hospital chaplains are specially trained to provide this type of therapeutic support irrespective of specific faith or belief system of the patient or family member.

Spiritual Suffering

Terminally ill patients are often confronted with severe existential symptoms and spiritual distress that can challenge health care providers. The spiritual aspects of dying are particularly challenging in that there is a lack of consensus on the definition of spirituality, who should be addressing spiritual issues at end of life, and the appropriate interventions to implement. Despite this lack of clarity, the importance of spirituality in the care of the seriously ill is increasingly acknowledged by clinicians, and the Institute of Medicine lists spiritual well-being as one of six domains of quality supportive care of the dying.

Little empirical evidence is available on how dying patients define spirituality. However, Chao and colleagues studied six Buddhist and Christian terminally ill patients in Taiwan, asking them what the essence of spirituality meant to them. Ten themes in four broad categories emerged: communion with self (self-identity, wholeness, inner peace), communion with others (love, reconciliation), communion with nature (inspiration, creativity), and communion with a higher being (faithfulness, hope, gratitude).22

Conventional symptom distress may therefore cross over into the realm of spiritual or existential distress when a patient experiences loss of control, feeling burdensome to others, a sense of isolation or hopelessness, or an intense fear of dying. Spiritual suffering may manifest as symptoms in any area of a person's experience—physical (e.g., intractable pain), psychological (e.g., anxiety, depression, hopelessness), religious (e.g., crisis of faith), or social (e.g., breakdown of human relationships). Spiritual pain toward the end of life also may take the form of losing one's will to live or expressing a heightened desire for death.

Perhaps the best intervention for spiritual distress is merely the acknowledgment of its existence. Puchalski and Romer23 recommend the mnemonic FICA as a way of approaching spiritual inquiry. FICA stands for Faith or beliefs, Importance and influence, Community, and Address. Some specific questions in each category include: What is your faith or belief? What role do your beliefs play in influencing your health? Are you part of a spiritual community? How should these issues be addressed by the health care provider? The goal of this inquiry is to demonstrate an acceptance of ongoing dialog regarding spiritual concerns. Kearney and Mount24 describe a more formal approach to spiritual distress through “surface-work” and “depth-work” as psychotherapeutic responses to spiritual pain. Surface-work refers to interventions aimed at alleviating distress at the conscious level of the individual's experience. Depth-work helps the patient reconnect with simple and ordinary aspects of life that, in the past, brought that person a sense of satisfaction. Examples of depth-work interventions include art and music therapy, image work, dream work, and meditation. Furthermore, Chochinov and colleagues25 developed a therapeutic intervention termed Dignity Therapy, which targets depression and suffering and enhances a sense of meaning and purpose in patients at end of life. Briefly, Dignity Therapy allows patients to address grief-related issues, offer comfort to loved ones they will leave behind, or provide instructions to friends and families by offering patients an opportunity to recall aspects of their lives that were most meaningful, identify personal history they most want remembered, and say the things that need to be said. Most of this work should be started before the last days and hours of life, but can be continued throughout the last days if the patient is able to participate.

Symptom Management

Intensive symptom management is another cornerstone of pediatric palliative care. Alleviation of symptoms reduces suffering of the child and family and allows them to focus on other concerns and participate in meaningful experiences. Despite increasing attention to symptoms, and pharmacologic and technical advances in medicine, children often suffer from multiple symptoms.Table 7.4 provides key elements and general approaches to managing symptoms.

Pain is a complex sensation triggered by actual or potential tissue damage and influenced by cognitive, behavioral, emotional, social, and cultural factors. Effective pain relief is essential to preventcentral sensitization, a central hyperexcitation response that may lead to hypersensitivity and escalating pain, and to diminish a stress response that may have a variety of physiologic effects. Assessment tools include self-report tools for children who are able to communicate their pain verbally, as well as tools based on behavioral cues for children who are unable to do so because of their medical condition or a neurodevelopmental disorder.Tables 7.5 to 7.7 address management of pain (see alsoChapter 76).

Many children with life-threatening illness experience pain that requiresopioids for adequate relief at some point in their illness trajectory. The WHO pain guidelines recommend the first step for mild pain and the second step for moderate to severe pain. Although it was previously recommended, prescribingcodeine should generally be avoided because of its side effect profile and lack of superiority over nonopioid analgesics. Furthermore, relatively common genetic polymorphisms in theCYP2D6 gene lead to wide variation in codeine metabolism. Specifically, 10–40% of individuals carry polymorphisms causing them to bepoor metabolizers who cannot convert codeine to its active form,morphine, and therefore are at risk for inadequate pain control. Others areultrametabolizers who may even experience respiratory depression from rapid generation of morphine from codeine. It is therefore preferable to use a known amount of the active agent, morphine.

It is important to explore with families, as well as members of the care team, misconceptions that they may have regarding respiratory suppression, addiction, dependence, the symbolic meaning of starting an opioid such as methadone or morphine and/or a morphine drip, and the potential for opioids to hasten death.There is no association between administration or escalation of opioids and length of survival. Evidence supports longer survival in individuals with symptoms that are well controlled.

Children also often experience a multitude ofnonpain symptoms. A combination of both pharmacologic (Table 7.6) and nonpharmacologic (Table 7.7) interventions is often optimal.Fatigue is one of the most common symptoms in children with advanced illness. Children may experience fatigue as a physical symptom (e.g., weakness or somnolence), a decline in cognition (e.g., diminished attention or concentration), and impaired emotional function (e.g., depressed mood or decreased motivation). Because of its multidimensional and incapacitating nature, fatigue can prevent children from participating in meaningful or pleasurable activities, thereby impairing quality of life. Fatigue is usually multifactorial in etiology. A careful history may reveal contributing physical factors (uncontrolled symptoms, medication side effects), psychological factors (anxiety, depression), spiritual distress, or sleep disturbance. Interventions to reduce fatigue include treatment of contributing factors, exercise, pharmacologic agents, and behavior modification strategies. Challenges to effectively addressing fatigue include the common belief that fatigue is inevitable, lack of communication between families and care teams about it, and limited awareness of potential interventions for fatigue.

SUMMARY

Patients near or at the end of life who report pain should be thoroughly assessed for other sources of suffering such as delirium, psychosocial distress, or spiritual distress. These patients are at risk of undertreatment of pain or inappropriate management of pain given widespread concerns about ethical issues, a misunderstanding of the doctrine of double effect, and excessive fears of addiction or legal recourse. In addition, patients and families and health care providers harbor misconceptions that pose barriers to effective pain management at the end of life. To address these concerns, we recommend eliciting beliefs and educating patients, families, and staff regarding effective pain management near or at the end of life. When maximal multidisciplinary approaches fail to relieve suffering, in certain cases palliative sedation is an acceptable means of alleviating distress.

Spiritual Dimensions

A spiritual assessment, which includes cultural aspects of beliefs and values, is the first step in addressing spiritual needs. Nurses need to elicit important spiritual beliefs and needs, which can vary greatly among patients and their family members. It is important for nurses to understand some of the common beliefs, values, and rituals of cultural backgrounds of patients and families that may differ from their own. However, rather than making assumptions based on the culture of the patient and family, beliefs must be assessed individually. Some common spiritual needs include exploring the meaning of suffering, the existential issues of patients and families, and resolving unfinished issues or life tasks. Spiritual distress may exacerbate physical suffering, and it can greatly affect quality of life. Helping patients and families work through spiritual issues can also have a positive impact on the family's grieving after the patient's death.

Spiritual distress may be a concern for many patients and their family members, but nurses also need to be open to cues and opportunities for spiritual growth. For example, patients can be empowered to guide their family's communication by being open about feelings, take the opportunity to resolve problem relationships, and explore religious beliefs.

Although some experienced nurses may be able to address spiritual issues and guide patients and families through spiritual tasks adequately, nurses also need to ensure that patients and families have access to the appropriate providers who can address spiritual needs. Ideally, this is a chaplain, community clergy member, spiritual guide, or other counselor who is also competent in addressing suffering for persons with serious and end-stage illness.

Nurses need to be aware of their own beliefs and values and ensure that they do not impose them on patients and families. It is important to be open to diverse ways of coping, grieving, and dying, rather than holding preconceived notions of how others should feel or behave.

Abstract

A growing number of music therapists work at least part-time with people in hospice and/or palliative care. These professionals work with patients and their families as part of an interdisciplinary group of care providers. Music therapists work to help reduce pain, anxiety and spiritual distress and to increase overall quality of life and positive coping for patients in hospitals, nursing facilities, private homes, and in-patient hospices. This care may start as soon as a patient is diagnosed with an illness such as cancer or renal failure, and can carry through until the patient’s death if the disease does not respond to curative treatment. In addition, music therapists help patients’ families work through their grief both before and after the death of their loved one. The challenge of hospice and palliative care is that music therapists care for children, people with disabilities and/or behavioral health issues, and people with a variety of cultural backgrounds as either patients or family members. Music therapists needs to be prepared to offer culturally competent and developmentally appropriate care while patients go through disease-focused treatment and as they approach the time of death.

Spiritual Care

Serious illness and end of life bring questions about life’s meaning and purpose. Spiritual and religious concerns often affect decision making.87 In one study questioning ambulatory outpatients, 66% of respondents said that they would want their physician to ask about their spiritual beliefs if they became gravely ill, and 16% said they would not.88 In a study of physicians, 81% of 1878 surveyed physicians believed that spiritual distress could worsen physical pain and 88% felt that addressing spiritual distress was just as important as relieving pain.89 Careful spiritual assessment can help the patient who desires supportive spiritual resources to obtain them. Expressive therapies such as music, art, collage, movement, and writing can facilitate the exploration of spiritual issues.90 Life review or reminiscence therapy can encourage the discovery of meaning. Chibnall and associates91 reported that higher levels of death distress in patients correlated with higher levels of physical and psychological symptoms, living alone, lower spiritual well-being, and less physician communication as perceived by the patient. In a study of patients with cancer, Meraviglia92 found that higher levels of finding meaning in life and greater use of prayer correlated with higher psychological well-being and less physical distress. Use of a spiritual assessment tool can facilitate communication about life’s meaning, life closure, and treatment goals and help assess a patient’s strengths. It can also be used as a therapeutic tool to increase self-efficacy and well-being.93-97 Puchalski’s model for spiritual assessment with the acronym FICA includes questions related to faith and belief, importance of that faith and belief, spiritual or social community, and how to address those beliefs in PC and end-of-life care (Table 82.1).94 The clinician can learn how the patient copes with illness, what support systems are in place, and what beliefs the patient may have that could affect decision making.98 Supporting the dignity of the patient and his or her “person-ness” is essential in effective spiritual care. Miller et al.99 demonstrated better spiritual and psychological well-being in patients with life-threatening illnesses who were given supportive-affective group experiences with a spiritual inquiry tool.

Requests from the patient for prayer with the clinician need not compromise the clinician’s religious beliefs. A clinician may choose to be with the patient in silence as the patient prays.98,100 Often, the patient can identify a spiritual mentor, such as a priest, minister, or rabbi, who can guide him or her through the spiritual territory of their illness and dying process. If not, involving the PC or hospice chaplain can provide needed spiritual support. Spiritual support, however, can come from the entire PC and health care team, family, and friends101 (see Chapter 114).

Common Patient and Family Responses to the Intensive Care Unit

Psychosocial alterations and behavioral changes or disturbances can occur in the patient who is critically ill as a result of distress caused by physically or psychologically invasive, communication-impairing, or movement-restricting procedures.20 When combined with the environmental and psychologic reactions to the ICU, mental status and personality can be altered. Environmental stressors can include crowding, bright overhead lighting, strong odors, noise, and touch associated with procedures or from those the patient cannot see.18 Psychologic stressors can include diminished dignity and self-esteem, powerlessness, vulnerability, fear, anxiety, isolation, and spiritual distress.21

The patient's family usually is overwhelmed by the ICU. Family members may experience fear, shock, anxiety, helplessness, anger, and denial.18,22 Like the patient, the family may be overwhelmed by the stimuli and technology of the ICU, in addition to the stress of a loved one's critical or life-threatening illness.

An acute state of delirium, often termed ICU delirium or psychosis, is a state of delirium that can occur during admission to the ICU. Delirium is a “disturbance in consciousness with inattention accompanied by a change in cognition or perceptual disturbance that develops over a short period of time (hours to days) and fluctuates over time.”19,23

ICU delirium may be hyperactive (characterized by agitation and restlessness); hypoactive (characterized by withdrawal and flat affect or by decreased responsiveness); or mixed (a fluctuation between the two).24

Delirium in the ICU, which is reversible, is associated with many precipitating factors, including mechanical ventilation, opioid and benzodiazepine use, presence of restraints and lines, sleep deprivation, polypharmacy, pain, and the ICU environment.19,25 Risk factors associated with delirium in the ICU include male gender, advanced age, malnutrition, and a history of dementia.26 Conditions associated with delirium in the ICU include trauma, sepsis, hypoxia, metabolic disorders, dehydration, central nervous system (CNS) pathology such as stroke, and hip fracture.26 ICU delirium can be assessed by standardized tests. The most common is the Confusion Assessment Method for the Intensive Care Unit (CAM-ICU). It is a four-part assessment used in tandem with the Richmond Agitation-Sedation Scale (RASS) and has been validated for use with a verbal patient or a patient on mechanical ventilation.25 Treatment for delirium consists of elimination or reduction of precipitating factors, antipsychotic medications (e.g., haloperidol), the discontinuation of nonessential medications, proper oxygenation, hydration, pain management, early mobilization, maximization of a normal sleep pattern, and the company of family or others.23

The transfer of a patient from the ICU to a general floor also can be a stress to the patient and family. Referred to as transfer anxiety, the patient and family may voice concerns of leaving staff members whom they have come to recognize and know by name; they may have to learn to trust new staff or fear that the level of care is inferior to that in the ICU.22 To minimize this anxiety, the physical therapist may continue to treat the patient (if staffing allows), slowly transition care to another therapist, or assure the patient and family that the general goals of physical therapy are unchanged.