Grief and end-of-life counseling

Bereavement is the loss of a close relation or friend to death. Grief is the internal experience of sadness in response to bereavement, and it is expressed through culturally and socially influenced practices of mourning. Grief can also be experienced by dying individuals themselves and those close to them in anticipation of death. Individual reactions to grief are determined by factors such as personality, psychiatric history, and access to support systems. Normal grief is characterized by psychiatric symptoms (e.g., intense sorrow, anxiety, guilt, emotional distress) and somatic symptoms (e.g., nonspecific chest pain, headaches) lasting 6–12 months. Persistent complex bereavement disorder is a psychiatric condition characterized by grief and/or mourning that lasts for at least 12 months and results in severe distress and functional impairment. Practitioners use the SPIKES protocol, a set of guidelines for breaking bad news to terminally ill patients. End-of-life counseling is a patient-centered approach that addresses the dying person's practical, psychological, emotional, and spiritual care needs. Bereavement counseling provides emotional support to the family and caregivers while screening for psychiatric illness caused by stress (e.g., persistent complex bereavement disorder). Caring for dying patients can be emotionally and psychologically demanding. Physicians should be attentive to their own grief following the death of a patient and seek support from colleagues.

• Bereavement: the loss of a close relation or friend to death
• Grief: the internal experience of sadness in response to bereavement and other meaningful losses (e.g., loss of functional abilities)
• Mourning: the outward expression of grief as influenced by factors such as religious beliefs, social norms, and cultural traditions

References:^[1]

Bereavement ^[2]

• Reactions to death can be influenced by factors such as personality, psychiatric history, access to support systems, and the nature of the relationship to the deceased.
• Stress caused by bereavement can have a negative impact on health.
  • Can precipitate or worsen physical/somatic illnesses (e.g., MI, stress-induced cardiomyopathy) and psychiatric disorders (e.g., MDD, PTSD, insomnia)
  • Increased risk of unhealthy behaviors (e.g., elevated tobacco and alcohol consumption, poor nutrition)
  • Increased risk of suicidal ideation

Types of grief ^[1]

Normal grief

• Characteristics
  • Often occurs in waves
  • Duration varies significantly (resolves within 6 to 12 months)
  • Intense sorrow, yearning for the deceased, emotional distress
  • Guilt connected to the care, loss, or prior relationship with the deceased
  • Anxiety
  • Insomnia
  • Anorexia, weight loss
  • Somatic symptoms (e.g., nonspecific chest pain, epigastric discomfort, headaches)
  • Thoughts of preoccupation, about death, and memories of the deceased
  • Illusions or hallucinations of the deceased (considered normal if the individual does not believe that they are real)
  • No significant suicidal ideation
  • No persistent or long-term functional impairment
  • Preoccupation with thoughts and memories of the deceased and the circumstances surrounding their death
• Differential diagnosis
  • Some symptoms are similar to those seen in major depressive disorder (MDD): Primary affects in grief are emptiness and loss that decrease in intensity and frequency over time, whereas MDD is characterized by persistent depressed mood with feelings of worthlessness and low self-esteem
  • Acute stress disorder
  • See “Differential diagnoses of trauma- and stressor-related disorders” and “Differential diagnosis” in “Major depressive disorder”.

Models of normal grief

• Kubler-Ross model ^[3]
  • A model describing 5 stages of grief following a loss:
    • Denial
    • Anger
    • Bargaining
    • Depression
    • Acceptance
  • Individuals may experience some or all of these stages and not always in the order presented above.
• The four phases of grief model ^[4]
  • A model describing 4 phases of grief following a loss:
    • Shock or numbness
    • Yearning or searching
    • Disorganization or despair
    • Reorganization
  • Proponents of this model believe that grief is a waxing and waning of the emotional process instead of fixed phases.

Persistent complex bereavement disorder ^[5]

• Definition: a mental disorder characterized by an unusually prolonged period of grief and/or mourning (lasting at least 12 months in adults and 6 months in children) resulting in severe distress and functional impairment.
• Overview
  • Diagnosis is based on five criteria.
  • Criteria C and D require symptoms to have been experienced most days and persisted for at least one year
  • Differential diagnosis: PTSD, depressive disorders, and normal grief
• Diagnostic criteria
  • Criterion A: the individual has experienced the death of a close relation or friend
  • Criterion B
    • Symptoms related to yearning, longing, and sorrow
    • Requires at least one of four symptoms experienced on most days and that persisted for at least 12 months in adults or 6 months in children
      • Persistent yearning and/or longing for the deceased
      • Intense sorrow and emotional pain in response to the death
      • Preoccupation with the deceased
      • Preoccupation with the circumstances of the death
  • Criterion C
    • Symptoms of reactive distress to the death
      • Marked difficulty accepting death
      • Experiencing disbelief or emotional numbness
      • Difficulty with positive reminiscing about the deceased
      • Bitterness or anger related to death
      • Maladaptive appraisals about oneself in relation to the deceased or the death (e.g., self-blame)
      • Excessive avoidance of reminders of the loss
    • Symptoms of social/identity disruption
      • A desire to die in order to be with the deceased
      • Feeling that life is meaningless or empty without the deceased, or the belief that one cannot function without the deceased
      • Difficulty trusting other individuals since the death
      • Feeling alone or detached from other individuals since the death
      • Confusion about one's role in life or a diminished sense of one's identity
      • Difficulty or reluctance to pursue interests since the loss or to plan for the future
  • Criterion D: clinically significant distress or functional impairment
  • Criterion E: distress or functional impairment that goes beyond of sociocultural norms
• Management
  • Psychotherapy
  • In case of depression: antidepressants

Overview

• Definition: End-of-life counseling is an individualized, holistic, patient-centered approach that addresses the dying person's practical, psychological, emotional, and spiritual care needs (see “General concepts of patient counseling” in "Patient communication and counseling").
• Goals
  • To involve the patient in end-of-life treatment decisions for improved care, comfort, and quality of life
  • To provide comfort and psychosocial support for family and caregiver
  • To determine the patient's wishes regarding the involvement of others (e.g., family, caregivers) in care
  • To inform all individuals involved in the patient's care of the patient's and family's wishes regarding end-of-life treatment including palliative care (see “Life support and end-of-life issues” in the “Death” article)

SPIKES protocol ^[6]

The SPIKES protocol is a set of recommendations to help practitioners communicate bad news to patients.

Counseling for specific scenarios

Counseling for terminally ill patients

• General considerations
  • Patient adjustment to the prospect of death is influenced by a variety of factors, including disease progression, cultural and religious beliefs, coping mechanisms, and available support systems.
  • Patients with terminal diseases may feel isolated, frustrated, and/or hopeless.
  • These patients should be counseled on learning how to handle difficult emotions and develop an understanding of their disease.
• Counseling for terminally ill patients
  • Emphasize that the patient is not alone and offer referrals to support groups.
  • Listen to the patient's frustrations and challenges and empathize with them; do not dismiss their concerns.
  • Avoid platitudes such as “Everything will be OK” or “I'm sure you'll feel better soon.”
  • Discuss end-of-life care, including DNR orders, with the patient and family.
  • Work together with the patient to identify sources of stress.
  • Counsel the patient on modest lifestyle changes that could improve comfort and quality of life.
  • Consider that the patients' wishes may differ from those of family members (e.g., patients may have come to terms with their imminent death, but family members demand further treatment or refuse to accept the circumstances.).
  • Assess for psychological distress (e.g., fear of being forgotten or abandoned, fear of the dying process, existential loneliness) ^[7]
    • Provide resources for coping with emotional and existential distress (e.g., existential psychotherapy, meaning-centered group psychotherapy). ^[8]
    • Screen for anticipatory grief (e.g., increased awareness of shortened life span, perception of being disconnected from others).
    • Ensure that all care providers interact with the patient in an empathic way.

Spiritual care and counseling in terminally ill patients

• General considerations
  • Spiritual care attends to the individual spiritual and/or religious needs and beliefs of a terminally ill patient and represents an essential component of palliative care.
  • Spiritual and/or religious patients may wish to discuss their beliefs and associated challenges with their health care providers.
  • A palliative care team should be multidisciplinary, not only consisting of physicians but also psychological experts and professionals with education and training in pastoral care (e.g., spiritual assistants).
  • Health care professionals should be trained to assess a patient's spirituality and signs of associated distress. ^[9]
  • Screening may include prompts such as:
    • “Do you consider yourself spiritual/religious?”
    • “How important is religion to you?”
    • “What importance does your spirituality have in your life?”
    • “Does your religion/spirituality provide you all the comfort and strength you need from it right now?”,
    • “How well are those resources working for you at this time?” ^[10]
  • If the patient shows signs of spiritual distress, referral to a board-certified chaplain of their faith is advised.
  • Physicians should support their patients' religious and spiritual practices, provided that they are appropriate and do not interfere with medical care.
  • Failure to provide adequate spiritual support is associated with increased patient dissatisfaction, decreased use of hospice care, and poorer quality of life.
• Goals
  • Reduction of psychosocial and spiritual distress
  • Promotion of dignity and meaning at the end of life
  • Improvement of overall quality of life through a supportive understanding of the patient's spiritual and/or religious beliefs and values

End-of-life counseling for families

• Assess and support family caregivers during the prebereavement period and develop pathways for bereavement care.
• Ensure the family members are aware and informed of the changes in the condition of the dying relative.
• Assess preparedness for death.
• Ask what kind of support the family desires leading up to or after the death of the relative.
• Answer questions in detail and address the next steps (e.g., what to expect, deterioration, loss of abilities)
• Listen and offer support, while also remaining professional
• Encourage gathering information on the illness and offer resources about the illness, grief, and bereavement services.
• In some cases, follow up with caregivers to assess how they are coping and plan a follow-up appointment.
• See “Communicating with bereaved patients.”

Addressing family and friends after death

If family or friends are present: ^[11]

• Introduce yourself (e.g., “I am Dr. X. I am one of the doctors on the team taking care of “Mr. Y” or “I am covering for the doctors taking care of Mr. Y”) and explain why you are there (e.g., “I regret to inform you that Mr. Y has died”).
• If possible, sit with the caregivers or family members.
• Be direct in disclosing the death and avoid any euphemisms that may be ambiguous.
• Offer condolences (e.g., “I'm so sorry for your loss”).
• Ask if they wish to be present and invite them to ask questions while you pronounce the death. ^[12]
• Solicit extra help and information for families that are interested, including assisting in finding psychosocial counseling.
• Helpful resources include:
  • Hospital chaplains
  • Case managers and social workers
  • Grief counselors and bereavement support groups
  • Organ donation teams
• See "End-of-life counseling" for more information.

Counseling for individuals experiencing bereavement ^[13][14]

• Express sympathy and concern.
• Provide a space to discuss the patient's feelings.
• Offer resources for grief and bereavement services.
• Assess for persistent complex bereavement disorder and/or other mental health conditions, and refer if necessary.
• Assessment and support of family and/or caregivers during the pre-bereavement period and develop pathways for bereavement care
• Informing family members of potential changes in the condition of the dying relative
• Assessment of patient, family, and caregiver preparedness for death
• Assessment of the kind of support the family desires leading up to and/or after the death of the patient's loved ones
• Answering questions the patient may have regarding their condition and the prognosis (e.g., deterioration, loss of abilities)

Processing the death of a patient

• Physicians should take time to process a patient's death.
• Find and explore coping mechanisms that work for you; coping strategies include:
  • Speaking with family, friends, and support system members.
  • Reflecting on the care provided to the patient, considering in particular any positive contributions that you made.
  • Sending condolences to a patient's family or loved ones if it might help to process the loss with them.
• If the death occurs in the middle of a busy shift and there is no time for oneself to process the loss
  • Take at least a few minutes before seeing the next patient and/or take additional time after a shift to process emotions.
  • Consider confiding about your emotional state with a peer, senior resident, or attending.
  • Think about the ways you can help the next patient(s).
• The death of a patient provides an opportunity to reflect on end-of-life care in general
• See “End-of-life issues” in “Principles of medical law and ethics.”
• See “Coping and processing death” and “Addressing family and friends after death” in “Death.”