Psychological suffering at the end of life

Lisa Ling.

PSYCHOLOGICAL SUFFERING is a virtually universal experience for patients at the end of life and their families. This is because suffering exists on a continuum and has many sources: grief about current and anticipated losses, fear and uncertainty about the future, unresolved issues from the past, and concerns about loved ones. Preexisting and new psychiatric disorders (depression, anxiety, post-traumatic stress disorder (PTSD), personality disorders, substance abuse, other major psychiatric disorders), difficult family dynamics, inadequate social support and/or coping resources, personal vulnerabilities related to past experiences, and existential and spiritual concerns may also amplify suffering. Physical symptoms, difficulties in relating to the health care team, financial concerns, and other practical matters may also contribute to patients’ and families’ distress.

The hospice team caring for the dying must be really good in assessing and differentiating the major types of psychological distress in the dying and their families.

What are the normal responses to psychological suffering?

Feelings of grief, sadness, despair, fear, anxiety, loss and loneliness are present, at times, for nearly all patients facing the end of their lives. Yet, in spite of such painful feelings, many patients, even those with significant vulnerabilities, are able to achieve a high degree of equanimity and acceptance of their illness and its prognosis.

The usual conditions for effective coping and the attainment of a degree of peace at the end of life include good communication and trust among patient, family, and hospice team, the ability to share fears and concerns, as well as meticulous attention to physical comfort and psychological and spiritual concerns.

Each patient brings a characteristic mode of coping and an array of strengths and vulnerabilities to the experience of a life-threatening illness. Thus, each individual’s psychological experience with a terminal illness will be unique and will be affected by multiple different factors.

All patients with a life-threatening illness benefit from a comprehensive psychological, social, and spiritual assessment. Psychological assessment allows the chaplain to support effective coping, to identify persons at risk of experiencing high levels of difficulty during their illness, and to proactively address vulnerabilities.

The basic domains of a psychosocial and spiritual assessment are:

  • Developmental issues
  • Meaning and impact of illness
  • Coping style
  • Impact on sense of self
  • Relationships
  • Stressors
  • Spiritual resources
  • Economic circumstances
  • Hospice staff–patient relationship

General Therapeutic options

The primary therapeutic response to psychological distress at the end of life is to listen, using standard communication techniques (using open ended questions, following up on affectively intense comments made by the patient, tracking with patient associations and expressed concerns, reflecting on patient emotions, etc.)

The chaplain, through offering the patient an opportunity to explore fears, concerns and feelings, to reflect on important relationships, past experiences with loss, and hopes for the future, and to share the unique meanings of illness, can provide the patient with a sense of being understood.

Being heard and understood, even in sharing the darkest thoughts and feelings, provides a way for the patient to mourn losses, to counteract the existential isolation of serious illness, to connect with past strengths and coping resources, and to gain a sense security and mastery.

In general, however, most terminally ill patients benefit from an approach that combines emotional support, flexibility, appreciation of the patient’s strengths, a warm and genuine relationship with the chaplain, elements of life-review, and exploration of fears and concerns.

The chaplain’s ability to communicate that there are possibilities for meaning, connection, reconciliation, and closure at the end of life may facilitate the patient’s ability to accept the approach of death, and to use remaining time well.

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