7 Items to be Assessed for Spiritual/Religious Concerns of Patients Near the End of Life
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1. Need for meaning in the face of suffering
The patient is having difficulty coming to terms with changes in things that gave meaning to life (e.g., grief related to key relationships, illness, frailty, dependency). The patient expresses despair or hopelessness about these changes. (The focus here is on coming to terms with illness, loss, diminished quality of life, or other diminishment. If the issue is about the meaning of their life, then score under Legacy.)
2. Need for integrity, a legacy, generativity
The patient questions the meaning of life—whether the life he or she has lived has meaning. Patient has painful regret about some or all of life lived. (If the regret is about a relationship where reconciliation is possible, then score under Concerns about relationships.) The patient questions whether he or she has made a positive contribution to loved ones, others, or society. The patient has tasks that must be completed before he or she is ready to die. (If the tasks are interpersonal, score under Concerns about relationships.) Reminiscing about their life is painful for the patient. The patient is distressed about having lived an imperfect life. (If the regret, conflict, or discomfort focuses on current illness, score under Need for meaning in the face of suffering.)
3. Concerns about relationships: family and/or significant others
The patient has unfinished business with significant others (e.g., need to overcome estrangement, need to express forgiveness, need for reconciliation, and unfulfilled expectations about others). (Regrets about relationships where reconciliation is unlikely should only be scored under legacy.) The patient has concerns about the family's ability to cope without him or her. The patient has concerns that he or she is a burden to family/friends. The patient expresses isolation or loneliness.
4. Concern or fear about dying or death
The patient has concerns about dying or being unready for death. This may include explicit hesitation, reluctance, or avoidance to consider or discuss mortality, or associated issues. (This refers to a general sense of unreadiness. If the unreadiness is expressed in terms of specific tasks, score under Need for integrity. If the unreadiness is expressed in terms of unfinished interpersonal tasks, score under Concerns about relationships.) The patient is impatient for death. The patient is concerned to participate in important events before death; the patient is concerned that illness or death will prevent participation in important events. The patient is torn between letting go and fighting on. The patient has uncertainty or fear about life after death (afraid of damnation; concerned about reunion with loved ones). The patient has fear of pain or of pain in dying.
5. Issues related to making decisions about treatment
The patient needs assistance with value-based advance care planning. The patient is confused or distressed about end-of-life treatment or about making choices about end-of-life treatment.
6. Religious/Spiritual struggle
The patient wonders whether he or she is being abandoned or punished by God. The patient is concerned about God's judgment, forgiveness, and/or love. The patient questions God's love for him or her. The patient feels God is not answering prayers (e.g., asking to die soon). The patient expresses anger with God. The patient is alienated from formerly meaningful connections with religious institutions or leaders.
7. Other dimensions
The patient identifies a need for assistance to perform important rituals, religious or otherwise. Other spiritual concerns.