THE FAMILY’S BEREAVEMENT

A family’s bereavement begins when their loved one is diagnosed with terminal illness, initiating a period of anticipatory grieving for both patient and family. After the patient dies, family members continue to grieve until they become reconciled to life without the deceased. For some, the process may take weeks or months; for others, grieving may take a year or longer. The Medicare hospice benefit includes bereavement care for the family for approximately one year after the patient’s death (NHPCO, 2021).

All healthcare practitioners may encounter bereaved persons, and it is important to recognize the signs of grieving and bereavement and offer appropriate support as part of care.

(See also “Grief” earlier in this course.)

Characteristics of Grief and Mourning

How a person grieves depends on their personality, physical and emotional coping patterns, relationship with and attachment to the person who died, cultural beliefs, and the situation surrounding the loss. Grief reactions can be psychological, emotional, physical, or social. Psychological and emotional reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include difficulty sleeping, appetite changes, somatic complaints, or illness. Social reactions can include feelings about taking care of others in the family, the desire to see or not see family or friends, or the desire to return to work (Harding et al., 2020). If the deceased was the primary earner, the family may suffer stress from significant financial loss.

Several authors have given definitions of grief that are now considered classic. For example, DeSpelder and Strickland (1987) identified five characteristics of grief:

  • Somatic distress
  • Preoccupation with the image of the deceased
  • Guilt
  • Hostile reactions
  • Loss of the usual patterns of conduct

Bowlby (1961) described three phases of mourning:

  1. Urge to recover the lost person
  2. Disorganization and despair
  3. Reorganization

These phases originated from the attachment theory of human behavior, which postulates people’s need to attach to others in order to improve survival and reduce risk of harm.

Lindemann’s classic text (1994) described three tasks of what he called “grief work.” These include:

  • Freedom from ties to the deceased
  • Readjustment to the environment from which the deceased is missing
  • Formation of new relationships

To free oneself from the deceased, a person must change the emotional energy invested in the lost person. This does not mean the deceased was not loved or is forgotten but that the grieving person is able to turn to others for emotional satisfaction. To readjust, the grieving person may need to modify their roles, identity, and skills to live in the world without the deceased. To form new relationships, the person redirects the emotional energy once invested in the deceased to other people and activities.

Grief work requires significant effort, so it is not uncommon for those who grieve also to experience overwhelming fatigue.

When a loved one has experienced a prolonged dying process, some family members not only grieve the loss of that person but also suffer the loss of their role as caregivers. They may experience a sense of relief that the burden of caregiving has lifted as well as guilt for feeling relief. These are natural reactions, and health professionals should encourage their expression.

COMPLICATED GRIEF

Complicated grief (CG) can be experienced after the loss of a loved one and is a prolonged bereavement that interferes with one’s ability to return to the activities undertaken before the death. CG may be diagnosed as a persistent, complex bereavement disorder when it continues for more than six months. The surviving family member or caregiver may show characteristics of shock or being stunned or numb. Extreme symptoms may include extended lack of trust or caring for any other individuals, including other children, and an intense reaction to or avoidance of remembrances of the loved one.

In the United States, approximately 7% of those experiencing the loss of a loved one suffer CG, and family caregivers of a dying child are the most likely to undergo this. When there is prolonged bereavement after the death of a child, family caregivers, particularly parents, may experience guilt, abandonment, loneliness, and loss of purpose or identity when caregiving ceases (Mason & Tofthagen, 2019).

Grief among Health Professionals

Health professionals who work with dying patients and their families may also grieve when a patient dies even though the death was expected. In the aftermath of the death of a patient, grief counseling in the form of a debriefing may be offered to the involved staff. Attending the funeral or memorial service may allow expression of the grief as well as show respect for the family and their loss.

Bereavement Resources

Bereavement options for families include grief support groups (either self-help or facilitated by professionals) and one-on-one counseling by a psychologist, psychiatrist, clinical social worker, or clergyperson. Many online support groups are also available as an adjunct to in-person therapy rather than as a substitute. If depression occurs in the context of bereavement, medication may be appropriate. No consensus exists among professionals as to the most effective intervention. There are many books and videos available, most of them specifically focused on a particular family role (parents, children, siblings, or spouse).

Hospice professionals who work with the bereaved maintain contact with the family, make home visits, and encourage family members to talk about their feelings, emphasizing that grieving is a painful process that may take years to resolve. It is important to refer to the deceased person by name and to discuss shared memories with the family. Continuing contact with the family offers them an anchor during a difficult time. A good condolence letter offers a tribute to the deceased and comfort to the survivors.