___________________________________________ Palliative Care and Pain Management at the End of Life
SPIRITUAL AND EXISTENTIAL CONCERNS OF PATIENTS AT THE END OF LIFE
Relation of Concern
Concerns
Past
Value and meaning of the person’s life Worth of relationships Value of previous achievements Painful memories or shame Guilt about failures, unfulfilled aspirations Disruption of personal integrity Physical, psychological, and social changes Increased dependency Meaning of the person’s life Meaning of suffering
Present
Future
Impending separation Hopelessness Meaninglessness Death
Religion
Strength of faith A life lived without disgrace to the faith Existence of afterlife
Source: [206]
Table 23
The need for spirituality at the end of life is heightened, and patients will search for meaning as a way to cope with emotional and existential suffering [420]. Spirituality helps patients cope with dying through hope. At the time of diag- nosis, patients hope for cure, but over time, the object of hope changes and the patient may hope for enough time to achieve important goals, personal growth, reconciliation with loved ones, and a peaceful death [2; 67]. In a landmark nursing care study conducted through a struc- tured interview, researchers explored the meaning of hope and identified strategies used to foster hope among 30 adults facing terminal illness [421]. Hope was defined as an inner power directed toward enrichment of “being.” Seven defining characteristics or strategies for fostering/maintaining hope were identified [421]: • Interpersonal connectedness: The presence of a mean- ingful shared relationship(s) with another person(s) • Lightheartedness: Verbal and nonverbal communica- tion characterized by delight, joy, or playfulness • Personal attributes: Determination, courage, serenity • Attainable aims: Directing efforts at some purposeful and attainable goal, such as writing notes/letters to distant family members or friends (from the past) • Spiritual base: The presence of active spiritual beliefs and practices • Uplifting memories: Recalling positive moments and uplifting times in the past • Affirmation of worth: Having one’s individuality accepted, honored, and acknowledged
Spirituality can also help a patient gain a sense of control, acceptance, and strength. As a result, greater spiritual well- being has been associated with decreased rates of anxiety and depression among people with advanced disease [207; 422]. There has been a growing emphasis on the need for physi- cians to discuss spirituality with their patients [419; 423]. A spiritual history should be obtained to elicit answers to such questions as: • Do you consider yourself spiritual or religious? • Do you have spiritual beliefs that help you cope with stress? • What importance does your faith or belief have in your life? • Are you part of a spiritual or religious community? One recommended mnemonic for the components of a spiritual history is SPIRIT: spiritual belief system; personal spirituality; integration with a spiritual community; ritualized practices and restrictions; implications for medical care; and terminal events planning [424]. Spiritual care is an essential component of palliative care, and most palliative care teams include a chaplain or access to one for consultative purposes. However, what patients and families perceive to be spiritual care and how it should be delivered have not been well-defined [417]. Patients and families have found spiritual comfort with friends and family, clergy and other pastoral care providers, and healthcare professionals [417]. Among healthcare professionals, barriers to providing spiritual care are time; social, religious, or cultural discordance; and lack of privacy and care continuity [417]. While it is not the role of the clinician to provide spiritual care, there is an
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MDCA1525
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