Imminent Death and Loss

Course #67501-


Study Points

  1. Develop a strategy for providing care to patients and their families over the last days and hours of life.
  2. Support appropriate grief and mourning.
  3. Discuss how culture impacts end of life care and death.

    1 . Which of the following measures are appropriate for managing the so-called "death rattle?"
    A) Oropharyngeal suction
    B) Laying the patient supine
    C) Anticholinergic medications
    D) All of the above

    THE PATIENT'S NEEDS

    Anticholinergic medications can eliminate the so-called "death rattle" brought on by the build-up of secretions when the gag reflex is lost or swallowing is difficult. However, it is important to note that results of clinical trials examining various pharmacologic agents for the treatment of death rattle have so far been inconclusive [6]. Despite the lack of clear evidence, pharmacologic therapies continue to be used frequently in clinical practice [3]. Specific drugs used include scopolamine, glycopyrrolate, hyoscyamine, and atropine (Table 2) [2,3,7]. Glycopyrrolate may be preferred because it is less likely to penetrate the central nervous system and with fewer adverse effects than with other antimuscarinic agents, which can worsen delirium [3]. For patients with advanced kidney disease, the dose of glycopyrrolate should be reduced 50% (because evidence indicates that the drug accumulates in renal impairment) and hyoscine butylbromide should not be used (because of a risk of excessive drowsiness or paradoxical agitation) [4]. Some evidence suggests that treatment is more effective when given earlier; however, if the patient is alert, the dryness of the mouth and throat caused by these medications can be distressful. Repositioning the patient to one side or the other or in the semiprone position may reduce the sound. Oropharyngeal suctioning is not only often ineffective but also may disturb the patient or cause further distress for the family. Therefore, it is not recommended.

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    2 . Terminal delirium
    A) is associated with longer survival.
    B) can be extremely distressing to caregivers.
    C) occurs before death in 5% to 9% of patients.
    D) can clarify symptom assessment and communication.

    THE PATIENT'S NEEDS

    Terminal delirium occurs before death in 50% to 90% of patients. It is associated with shorter survival and complicates symptom assessment, communication, and decision making. It can be extremely distressing to caregivers and healthcare professionals alike [3]. Safety measures include protecting patients from accidents or self-injury. Reorientation strategies are of little use during the final hours of life. Education and support for families witnessing a loved one's delirium are warranted [3]. There are few randomized controlled trials on the management of terminal delirium. Agents that can be used to manage delirium include haloperidol, which is frequently the first choice for its relatively quick action [3,8]. Other drugs may include olanzapine, chlorpromazine, levomepromazine, and benzodiazepines [3,8]. For terminal delirium associated with agitation, benzodiazepines, including clonazepam, midazolam, diazepam, and lorazepam may be helpful [3,8,9]. Depending on which drug is used, administration may be intravenous, subcutaneous, or rectal, and the dose can be titrated until effective.

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    3 . Palliative sedation should
    A) never be carried out.
    B) be initiated as soon as a patient requests it.
    C) be considered when the family asks to relieve the patient's suffering.
    D) be considered after consultation with a psychiatrist and pastoral services, if appropriate.

    THE PATIENT'S NEEDS

    Palliative sedation may be considered when an imminently dying patient is experiencing suffering (physical, psychologic, and/or spiritual) that is refractory to the best palliative care efforts. Terminal restlessness and dyspnea have been the most common indications for palliative sedation, and thiopental and midazolam are the typical sedatives used [1,10,11]. For patients who have advanced kidney disease, midazolam is recommended, but the dose should be reduced because more unbound drug becomes available [1,4]. Before beginning palliative sedation, the clinician should consult with a psychiatrist and pastoral services (if appropriate) and talk to the patient, family members, and other members of the healthcare team about the medical, emotional, and ethical issues surrounding the decision [1,2,9,12,13]. Formal informed consent should be obtained from the patient or from the healthcare proxy.

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    4 . Which of the following is considered to be physician-assisted death?
    A) Using high-dose opioids to relieve pain
    B) Administration of a lethal agent with a merciful intent
    C) Deactivation of an implantable cardioverter-defibrillator
    D) All of the above

    THE PATIENT'S NEEDS

    Physician-assisted death, or hastened death, is defined as active euthanasia (direct administration of a lethal agent with a merciful intent) or assisted death (aiding a patient in ending his or her life at the request of the patient) [2]. The following are not considered to be physician-assisted death: carrying out a patient's wishes to refuse treatment, withdrawal of treatment, and the use of high-dose opioids with the intent to relieve pain. The American Medical Association Code of Ethics explicitly states, "Physician-assisted suicide is fundamentally incompatible with the physician's role as healer, would be difficult or impossible to control, and would pose serious societal risks" [14]. Position statements against the use of physician-assisted death have been issued by many other professional organizations, including the National Hospice and Palliative Care Organization and the American Academy of Hospice and Palliative Medicine (AAHPM) [15,16]. The AAHPM states that their position is one of "studied neutrality" [15]. The basis for these declarations is that appropriate hospice care is an effective choice for providing comfort to dying patients.

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    5 . Families often misinterpret the early signs of terminal delirium as signs of
    A) healing.
    B) suffocation.
    C) uncontrollable pain.
    D) emergence from sedation.

    THE FAMILY'S NEEDS

    Families often misinterpret the early signs of terminal delirium as signs of uncontrollable pain. However, if pain has been adequately managed throughout the delivery of palliative care, such pain will not begin during the last hours. As the patient slips in and out of consciousness, family members may become increasingly distressed about not being able to communicate anymore with their loved one. Although it is unknown what a dying patient can hear, other experiences in medicine suggest that awareness may be greater than the ability to respond. Family members should be encouraged to continue talking with their loved one to help them attain a sense of closure.

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    6 . Which of the following is TRUE of the family's needs immediately following death?
    A) Family members should be allowed to touch, hold, and kiss their loved one as they feel comfortable.
    B) The healthcare team should respect the needs of the family to conduct personal, cultural, or religious traditions, rites, and rituals.
    C) For family members who were not present during the death, the clinician should describe the event while reassuring them that the patient died peacefully.
    D) All of the above

    THE FAMILY'S NEEDS

    Despite the best efforts to prepare the family, reactions are unpredictable when death occurs. The clinician should take time to answer questions from family members, including children, and perhaps provide information on the physiologic events associated with death [2]. For family members who were not present during the death, the clinician should describe the event, while reassuring them that the patient died peacefully.

    Many experts believe that people can handle grief better if they spend time with a loved one immediately after death. Family members should be allowed to touch, hold, and kiss their loved one as they feel comfortable. The healthcare team should respect the needs of the family to conduct personal, cultural, or religious traditions, rites, and rituals.

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    7 . Which of the following is TRUE regarding grief, mourning, and bereavement?
    A) Grief counseling should begin when the patient is alive.
    B) Mourning is composed of sequential stages that occur in order.
    C) The physician's attendance at the patient's funeral would be inappropriate.
    D) The healthcare team should extend bereavement services for no more than one month after the death of the patient.

    GRIEF, MOURNING, AND BEREAVEMENT

    Grief comprises a range of feelings, thoughts, and behaviors that fall in the realm of the physical, emotional, and social domains [2]. Individuals may have trouble sleeping, changes in appetite, or other physical symptoms or illness. Emotions can include sadness, anxiety, guilt, and anger. Return to work, activities with friends, and taking care of family can be beneficial.

    Grief counseling for the family and patient should begin when the patient is alive, with a focus on life meaning and the contributions from the patient's family. An understanding of the mediators of the grief response can help physicians and other members of the healthcare team recognize the family members who may be at increased risk for adapting poorly to the loss [8,20]. These mediators are:

    Nature of attachment (how close and/or dependent the individual was with regard to the patient)

    Mode of death (the suddenness of the death)

    Historical antecedents (how the individual has handled loss in the past)

    Personality variables (factors related to age, gender, ability to express feelings)

    Social factors (availability of social support, involvement in ethnic and religious groups)

    Changes and concurrent stressors (number of other stressors in the individual's life, coping styles)

    Prolonged grief disorder was added to the DSM-5-TR in 2022, after several decades of studies that suggested many people were experiencing persistent difficulties associated with bereavement that exceeded expected social, cultural, or religious expectations [31]. It is defined as "intense yearning or longing for the deceased (often with intense sorrow and emotional pain) and preoccupation with thoughts or memories of the deceased. In children and adolescents, this preoccupation may focus on the circumstances of the death" [31]. In adults, this intense grief must still be present one year after a loss to be considered prolonged grief disorder; in children, the timeframe is six months. Additionally, the individual with prolonged grief disorder may experience significant distress or problems performing daily activities at home, work, or other important areas [31]. Clinical assessment should be carried out for individuals at risk of prolonged grief. Distinguishing between prolonged grief disorder and major depression can be challenging, as many signs and symptoms are similar. However, the characteristic symptoms of prolonged grief disorder are [31]:

    Identity disruption (e.g., feeling as though part of oneself has died)

    A marked sense of disbelief about the death

    Avoidance of reminders that the person is dead

    Intense emotional pain (e.g., anger, bitterness, sorrow)

    Difficulty reintegrating (e.g., unable to engage with friends, pursue interests, plan for the future)

    Emotional numbness

    Feeling that life is meaningless

    Intense loneliness and feeling of being detached from others

    Satisfactory adaptation to loss depends on "tasks" of mourning [20]. Previous research referred to "stages" of mourning, but the term "task" is now used because the stages were not clear-cut and were not always followed in the same order. The tasks include:

    Accepting the reality of the loss

    Experiencing the pain of the loss

    Adjusting to the environment in which the deceased is missing (external, internal, and spiritual adjustments)

    Finding a way to remember the deceased while moving forward with life

    After the patient's death, members of the palliative care team should encourage the family to talk about the patient, as this promotes acceptance of the death. Explaining that a wide range of emotions is normal during the mourning process can help family members understand that experiencing these emotions is a necessary aspect of grieving. Frequent contact with family members after the loved one's death can ensure that the family is adjusting to the loss. Referrals for psychosocial and spiritual interventions should be made as early as possible to optimize their efficacy.

    Bereavement support should begin immediately with a handwritten condolence note from the clinician. Such notes have been found to provide comfort to the family [21,22]. The physician should emphasize the personal strengths of the family that will help them cope with the loss and should offer help with specific issues. Attendance at the patient's funeral, if possible, is also appropriate.

    How bereavement services are provided through a hospice/palliative care program vary. Programs usually involve contacting the family at regular intervals to provide resources on grieving, coping strategies, professional services, and support groups [1,9]. When notes are sent, family members should be invited to contact the physician or other members of the healthcare team with questions. Notes are especially beneficial at the time of the first holidays without the patient, significant days for the family (patient's birthday, spouse's birthday), and the anniversary of the patient's death. Bereavement services should extend for at least one year after the patient's death, but a longer period may be necessary [9,18].

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    8 . All of the following are mediators of grief, EXCEPT:
    A) Mode of death
    B) Personality variables
    C) Nature of attachment
    D) Quality of health care

    GRIEF, MOURNING, AND BEREAVEMENT

    Grief counseling for the family and patient should begin when the patient is alive, with a focus on life meaning and the contributions from the patient's family. An understanding of the mediators of the grief response can help physicians and other members of the healthcare team recognize the family members who may be at increased risk for adapting poorly to the loss [8,20]. These mediators are:

    Nature of attachment (how close and/or dependent the individual was with regard to the patient)

    Mode of death (the suddenness of the death)

    Historical antecedents (how the individual has handled loss in the past)

    Personality variables (factors related to age, gender, ability to express feelings)

    Social factors (availability of social support, involvement in ethnic and religious groups)

    Changes and concurrent stressors (number of other stressors in the individual's life, coping styles)

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    9 . Which of the following is a task of mourning?
    A) Accepting the reality of the loss
    B) Experiencing the pain of the loss
    C) Adjusting to the environment in which the deceased is missing
    D) All of the above

    GRIEF, MOURNING, AND BEREAVEMENT

    Satisfactory adaptation to loss depends on "tasks" of mourning [20]. Previous research referred to "stages" of mourning, but the term "task" is now used because the stages were not clear-cut and were not always followed in the same order. The tasks include:

    Accepting the reality of the loss

    Experiencing the pain of the loss

    Adjusting to the environment in which the deceased is missing (external, internal, and spiritual adjustments)

    Finding a way to remember the deceased while moving forward with life

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    10 . Which of the following statements regarding cultural considerations at the end of life is TRUE?
    A) Extended grieving is considered pathologic in all cultures.
    B) In Chinese culture, stoicism during bereavement is valued.
    C) End-of-life care planning is complex, and cultural competence entails being reflective and accessing one's intuition.
    D) A provider's level of cultural competence will not typically influence how patients and families perceive the end-of-life experience.

    CULTURAL CONSIDERATIONS

    Cultural sensitivity consists of promoting trust and mutual respect for cultural differences between providers and patients [23]. In end-of-life care, an understanding of cultural differences in beliefs about grieving is necessary. In Western culture, grieving is expected to be time-limited, and extended grieving can be considered pathologic [24]. However, in other cultures, extended periods of grieving are socially sanctioned.

    Cultural groups adhere to culturally laden beliefs about death rituals, death symbols, language, gender roles, advanced care planning, end-of-life directives, and bereavement and grief. As a result, a provider's level of cultural competence will influence how he or she interacts with patients and family members during the end of life, ultimately influencing how patients and families perceive the end-of-life experience [25]. In traditional Asian families, for example, the eldest son may be designated to make key health and end-of-life decisions [26]. Various cultural groups will have specific norms about the expression of emotion during funerals. White Protestant individuals, for example, may value stoicism, while the Chinese equate the amount of wailing to the amount of respect paid to the deceased [27]. Crying that involves shaking of the body is considered cathartic and a normal reaction in some cultures [28].

    It is also important to consider intersectionality in discussions of cultural competence. Individuals do not belong in one category in terms of their identity. Often, patients have overlapping identities (e.g., sex/gender, socioeconomic status, religion, class, sexual orientation, racial/ethnic minority group). This contributes to discrimination and marginalization, which influences how one experiences death and dying [29]. Some experts assert that the word "competence" in cultural competence is a misnomer, because it implies that providers can obtain a "rational mastery and application of knowledge" [30]. End-of-life care planning is complex, and cultural competence entails being reflective and accessing one's intuition.

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