PSYCHOSOCIAL SUPPORT ISSUES

Coming to terms with one’s own mortality is different for each individual and is related to the way he or she handles other life challenges. Compassionate care and support from health professionals and loved ones are essential during this crisis. Adjusting to palliative care involves shifting the patient’s and family’s expectations from curing to healing. Even when cure is no longer possible, healing is.

In the landmark work Choices in Healing, Lerner (1996) defines healing as “an inner process through which a person becomes whole,” a process of transforming one’s life in a variety of ways in the face of death. This shift in expectations can help maintain hope, seen as crucial in overall adaptation to crisis. For example, the patient who has confidence that pain and suffering can be controlled will have hope for future quality of life. Patients who believe they are loved and cared for will have hope in their relationships.

Common End-of-Life Emotions

The person diagnosed with a terminal illness experiences a host of emotions, including those famously described by Dr. Elisabeth Kübler-Ross in her classic 1969 book On Death and Dying. Her model includes the five stages of denial, anger, bargaining, depression, and eventual acceptance. An individual may move back and forth among the stages and may repeat one or more stages.

These and other emotions described below are all normal reactions and deserve equal emphasis with physical care at the end of life. Effective coping with these reactions can improve the quality of life remaining and help the patient resolve important issues with family and friends.

DENIAL

According to Dr. Kübler-Ross, denial of a terminal diagnosis occurs when an individual is unable to believe the eventual outcome of death. This may take the form of disbelief in diagnostic test results, questioning whether an error has been made, or maligning the person who has made the diagnosis. Denial usually gives way gradually to an understanding that the diagnosis is, in fact, an accurate one, although denial may evolve to other stages in the process before acceptance of the diagnosis occurs, if at all (Mayo Clinic, 2020).

ANGER

Anger is common during terminal illness. Patients may express anger at the illness, the side effects of medications and other treatments (or the failure of same), disruption in life plans, changes in social roles and lifestyle, and the prospect of death. Validating a patient’s anger as a normal reaction to terminal illness can open a discussion of how to deal with the anger and make the most of their remaining time.

BARGAINING

Bargaining in response to a terminal illness means that an individual promises to change or enact certain behaviors for continued life. The bargaining may be proposed with one’s physician, the bearer of bad news, or even God. The idea is that the eventual outcome of death may be changed if the bargain is carried out (Morrow, 2022). For example, someone with a diagnosis of terminal lung cancer may promise to quit smoking to extend life. Another person may promise to attend church.

DEPRESSION

Health professionals must distinguish between normal sadness and possible depression in each patient facing a terminal illness. Depression is commonly underdiagnosed in the general population; consequently, depression in dying patients may be a preexisting condition. Just as patients require ongoing evaluation for depression and anxiety throughout their course of treatment, so do family caregivers.

An untreated diagnosis of depression may lead to an impaired quality of life. Severe depression may cause a shortened survival rate, increased pain, and suicide. Recognizing the symptoms in people with terminal illness and referring them for appropriate treatment can greatly improve their quality of life.

The patient who appears depressed should first be assessed for pain. Untreated or undertreated pain can cause depression and other symptoms.

The following factors may suggest the need for early intervention to treat depression as part of end-of-life care:

• History of depression
• Feelings of disbelief, denial, or despair
• Weak support system (few or no family members, few friends, solitary work environment)
• Evidence of persistent irrational beliefs or negative thinking regarding the diagnosis
• Greater dysfunction related to the illness, such as pain, shortness of breath, appetite and sleep dysfunction, and decreased mobility
  (NCI, 2019)

Patients with mild depression may be helped by supportive individual or group counseling with a mental health professional. More intense depression will likely require pharmacologic management in addition to counseling. Family and close friends of dying patients may also require counseling and temporary pharmacologic management (NCI, 2019).

Although depression in dying patients is not markedly different from depression in other medical conditions, treatment may need to be modified because of other factors, particularly other medications. Antidepressants such as tricyclics and selective serotonin reuptake inhibitors (SSRIs) have a delayed onset of action of up to eight weeks, and patients undergoing end-of-life care may not live a sufficient length of time to benefit from the antidepressant therapy (McCuistion et al., 2021).

FEAR

The most common fears are those of death itself, pain, dying alone, and being a burden. People with strong spiritual beliefs may not fear death but still fear the possibility of pain and suffering at the end of life. Fear can heighten the expectancy of pain and lead to symptoms such as distress, sleep disturbances, or anticipatory nausea and vomiting. Fear can substantially interfere with the quality of life. Health professionals with expertise in palliative care can reassure patients that pain and suffering will be relieved and that patients will not die alone.

Most people also have fears and concerns about loss of dignity and control. Caregivers can provide comfort by allowing the person to express any fears and concerns about dying and by reassuring the person that they will honor advance directives. They include patients in discussions about issues that concern them. They listen to patients reminisce about their lives. They encourage friends and family members to visit and talk to the patient as well, even when they progress to unresponsiveness or sedation. They may simply keep the person company; talking, reading, or just “being there” also can be comforting.

LOSS

Life is filled with losses, some minor (lost car keys), some major (job loss), some physical and tangible (losing hair during chemotherapy), others psychological and intangible (losing social contacts). Loss may be sudden and unexpected, or anticipated and predicted. The meaning or value of what is lost to the individual determines the feelings that result. Aging and the end of life involve a succession of losses, concluding with the ultimate loss: loss of self. Other losses may include:

• Loss of physical strength and abilities
• Loss of mental abilities (confusion/dementia)
• Loss of relationships
• Loss of self-esteem
• Loss of body image
• Loss of independence
• Loss of control over life plans and lifestyle

Experiencing multiple losses often leaves insufficient time to grieve those losses and creates feelings such as hopelessness, withdrawal, isolation, and anger. Physical weakness and/or pain can also diminish the ability to cope with loss.

GRIEF

Grief is a normal human response to loss, and it is universal, individual, and unpredictable. Researchers have proposed different models to describe the various stages of grief, but people do not always move through such stages sequentially or predictably. Each person progresses at their own pace and may move forward and backward through one or more stages, which can include:

• Shock and numbness
• Yearning and searching
• Disorganization and despair
• Some degree of reorganization

Patients’ experiences of grief are determined by their values, cultural norms, physical and emotional coping resources, current life stresses, personality, and circumstances. In uncomplicated grief, an individual is able to move through the stages and emerge from the grieving process. Complicated grief (also called chronic grief or dysfunctional grief) is an exaggeration of the normal process of grieving, often resulting from multiple losses and making it difficult for an individual to reorganize and move on.

The dying patient and the family may also experience anticipatory grief, a process of working through their intellectual, behavioral, and emotional responses to what the expected death will mean when it happens. During this process, families often try to resolve personal and family issues, offer love and support, involve the dying person in plans for a memorial service, and determine any last wishes not yet spelled out in a legal document. Adaptive grief is when the reality of death is starting to be accepted (Harding et al., 2020).

(See also “The Family’s Bereavement” later in this course.)

Religion and Spirituality in End-of-Life Care

National and international palliative care guidelines acknowledge the importance of religion and/or spirituality in illness, particularly at the end of life, and support care that attends to the spiritual needs of patients. Spiritual well-being has been shown to affect the coping mechanisms and quality of life of dying patients. Strong spiritual well-being significantly reduces depression and hopelessness at the end of life. The greater their self-reported religious beliefs, the more optimistic individuals are in their perceptions of outcomes, including greater confidence in treatment efficacy (Rego et al., 2020).

It is vital that all members of the healthcare team learn culturally competent practices regarding religion and spirituality in end-of-life care and elicit the patient’s expectations and preferences for the end of their life. For instance, in order to address the patient’s religious or spiritual values, clinicians may ask, “Are you at peace?” or “Do you find comfort in religious or spiritual beliefs?” Many healthcare decisions, such as whether to withdraw or withhold life-sustaining treatment, to palliate symptoms, or to initiate terminal sedation, require consideration of a patient’s religion and beliefs.

Perceived or real, barriers to performing end-of-life rituals of religious significance can have negative and enduring repercussions that are significant when such spiritual needs go unrecognized by health professionals. Research has found that patients may believe their faith helps them cope with impending death and that practices such as prayer, both alone and with others, are meaningful. They may believe that the trajectory of their lives is the plan of a supreme creator but that they should do their best to live right. They may feel that their religion/spirituality transforms how they experience their illness and the end of life, and they often depend on support from their faith community (Rego et al., 2020).

• Religious and spiritual beliefs and practices are highly individual, although research shows some racial/ethnic similarities.
• Black people are more likely to consider religion/spirituality as important compared to White people.
• Some South Asian religious faiths believe that prolonging the dying process and interfering with clarity of consciousness should be avoided.
• Chinese death rituals honor elders, and the spiritual practice will depend on the age of the deceased.
• Native American death rituals help the spirit leave the body.
• Muslims believe that death marks the transition from one life to another, and that the treatment of terminal pain is permissible under the distinction of intended actions.
• Burials tend to occur very soon after death in the Muslim and Jewish communities.
• Drive-through funerals may be seen in Japan or the United States.
  (Applebury, 2022)

Family Caregiver Burdens

Family caregivers, partners, and close friends make up a “shadow workforce” that bears an enormous burden during end-of-life care of a loved one. They play a major role in actual patient care and in decision-making about care provided by others. Wider informal caregiver networks also help ease the multiple burdens placed on primary caregivers. This may include other family members, church groups, neighbors, or volunteer respite workers.

Access to support services for family caregivers may improve the quality of life for the patient, but despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize such services to cope with the demands of caregiving. Therefore, healthcare professionals should be aware of some common burdens of family caregiving when communicating and interacting with the family.

One in 5 family caregivers at the end of life undergo a significant burden, usually exacerbated by the duration of care needed or the degree of the patient’s level of dependence. Many organizations and online resources are available for dying patients and their families that can provide information and support. It is imperative for healthcare workers to familiarize themselves with these resources and direct patients and families on how to access them (Bijnsdorp et al., 2022). (See also “Resources” at the end of this course.)

TIME AND LOGISTICS

Caring for a spouse or other family member with serious chronic illness or disability is time-consuming and demanding. Whether caregiving takes a few hours per week or 24 hours a day, the responsibility is continuous. Coordinating medications, treatments, and social services and possibly tending to the needs of other family members can be overwhelming and exhausting, causing caregiver burnout. There are a multitude of support services available to family caregivers that are underutilized likely because they do not self-identify as caregivers and do not recognize the need for respite care or other services. Conversely, when an individual recognizes that they are experiencing burnout, they are more apt to determine what services may help them and to practice self-care (Bijnsdorp et al., 2022).

PHYSICAL TASKS

The majority of family caregivers are middle-aged or older women who may not have the training or physical stamina necessary to lift, move, or turn terminally ill loved ones. Without professional help, they risk physical injury. Caregivers experience more physical injury than noncaregivers. The most common physical complaints of caregivers are pain, particularly headaches and back pain. Clinicians should anticipate this risk and offer assistance with physically strenuous aspects of care (Bijnsdorp et al., 2022).

FINANCIAL COSTS

The financial burden caused by the cost of terminal care is problematic for many patients and families at the end of life. Although the majority of costs typically relate to medical expenses, other costs may include legal services, transportation, insurance payments, financial planning, and funeral expenses. Even though the Medicare hospice benefit may relieve some of the financial burden of serious illness, families can still face severe economic consequences. Many caregivers must give up their paying job and lose wages and benefits or make major life changes in order to care for their loved one. In our society, a large number of caregivers are African Americans and Hispanic Americans, who generally face greater economic hardship from caregiving.

To address this, in some states, cities, and counties, family caregivers are able to apply for some payment for providing in-home supportive services (CDSS, 2019). Other possible means to help include: reducing out-of-pocket costs by applying to drug companies for assistance with the cost of prescriptions, using legal aid services, seeking debt management counseling, and obtaining help from charitable organizations (Bijnsdorp et al., 2022).

MENTAL AND PHYSICAL HEALTH RISKS

Caregivers experience many emotions, ranging from sadness, resentment, anger, and a sense of inadequacy, to deep gratitude for being able to care for the loved one. Physical exhaustion, economic worries, disrupted routines, and seemingly endless responsibilities can lead to mental health problems such as anxiety and depression. Inadequate or interrupted sleep is also common among caregivers, as is loss of social and leisure time.

Caregiver physical deterioration may also be exacerbated by caregivers failing to take the time to have their own medical issues treated. Health problems related to caregiving are most pronounced among women and those with limited education and can include increased risk of cancer as well as increased mortality, particularly among older adults. Increased stress in caregivers can be overwhelming and may result in abusive behavior toward an older patient. Referring the patient for respite care can offer caregivers much needed relief and time to take care of themselves (Bijnsdorp et al., 2022).

SUPPORT AND EDUCATION FOR CAREGIVERS

Various programs and interventions have been developed to assist family caregivers to cope with the demands of caregiving. These support services include assistance with caregiving or related tasks and emotional or educational support for family caregivers by health professionals and community service providers. Some examples of support services include information and referral, education, support groups, counseling, crisis intervention hotlines, and problem-solving training. One such educational program is the Resources Enhancing All Caregivers Health (REACH) in the Veterans Administration (VA) (Bijnsdorp et al., 2022; U.S. DVA, 2022b).

The negative health effects of caregiving can be at least partially alleviated by thorough assessment of caregiver needs, leading to a care plan with support services. Respite care, caregiver support groups, and skills-training interventions can further reduce caregiver burden.