END-OF-LIFE CARE FOR SPECIAL POPULATIONS

Patients in need of end-of-life care present a diverse group in terms of concurrent illnesses, age, and social attributes. Those with cancer comprise a large percentage of the dying patient population. Some of their greatest concerns at the end of life are a loss of systemic function, abnormal hematological measurement, anorexia, cachexia, hypercalcemia, and pleural effusion. Patients with dementia may experience problems with pain management and the continued need for nutrition and hydration. Dying children and their families are another unique group, with particular challenges related to pain management, the need for therapeutic communication with family members, legal and financial issues, and support around bereavement. Patients with HIV/AIDS and veterans are two other groups with special end-of-life care considerations.

The Patient Who Has Cancer

There were estimated to be over 16.9 million people living with cancer in the United States in 2019, and this is expected to increase to 22.2 million by 2030. About 39.5% of the U.S. population will develop cancer during their lifetime. Deaths due to cancer are highest among those with cancer of the lung (21%), colon and rectum (9%), pancreas (8%), and breast (7%) (NCI, 2022b, 2020).

The current estimated cost of cancer is $150.8 billion in the United States. This is expected to increase because of the aging population and as new expensive treatments become the standard of care (NCI, 2020).

Aggressive end-of-life care is considered to be chemotherapy within the last two weeks of life, an emergency room visit or hospital or ICU admission within 30 days of death (36.8%), or admission to hospice within the last nine days of life (56.5%) (Egan et al., 2020). Approximately 50% of terminal patients experience some form of aggressive therapy, especially repeated hospital and ED visits. Although hospice use is increasing, many cancer patients are entering hospice care just days before death.

Aggressive end-of-life care may not be in keeping with a patient’s stated preferences. Earlier enactment of palliative care and better communication with patients are considered essential to improving end-of-life care (Egan et al., 2020). Therefore, education for healthcare practitioners about the end-of-life care options for patients and their families is needed so that providers can offer information about possible alternatives to aggressive treatment.

People with terminal cancer have the same physical and emotional needs as any dying person, not the least of which is pain management and its side effects. Not every person with terminal cancer experiences excruciating pain, but it is common. Other physical needs arise as the disease progresses, affecting all major body systems, and should be managed based on the goals of patient comfort and quality of life.

The person with advanced cancer also faces special problems. They may be suffering the effects of chemotherapy and radiation therapy. A recent study showed that people with very late chemotherapy use, very short hospice enrollment, and repeated hospitalization were considered to have poor end-of-life experiences by oncologists. More aggressive treatment occurred less frequently for patients with health maintenance organization insurance coverage (Egan et al., 2020).

Healthcare professionals must discuss these issues with the patient and family so they are prepared for the time ahead.

DISRUPTION OF FUNCTION

As cancer metastasizes to liver, lungs, bone marrow, brain, bowel, and/or adrenal glands, it disrupts the function of those organs. For example:

  • Liver metastases can impair digestion and cause nausea and vomiting.
  • Cancer that has metastasized to the bowel can interfere with elimination, even to the point of fecal impaction.
  • Brain tumors increase intracranial pressure as they grow and can cause changes in mental status, vomiting, headache, dizziness, and seizures.
  • Growth of metastatic breast, lung, or prostate cancer may compress the spinal cord and lead to irreversible paraplegia if not treated by radiation to shrink the tumor.

Decisions concerning whether and how to treat these complications should involve the patient and the family as well as clinicians.

ANEMIA

Most people with cancer are at least mildly anemic, but chemotherapy and radiation therapy can exacerbate the problem.

ANEMIA AND ESAs

Erythropoietin (Epogen) has been used to treat the anemia; however in 2010, the Food and Drug Administration issued a safety announcement indicating that the use of Epogen and other erythropoiesis-stimulating agents (ESAs) such as Procrit and Aranesp can increase the risk of cancerous tumor growth and shorten life expectancy in patients with cancer.

More recent studies, including a literature review including 15 meta-analyses and two random-controlled trials (RCTs), explored whether or not the use of ESAs in the presence of various cancers are considered to show sufficient improvement that outweighs the risks. The recommendations from the studies are:

  • ESAs may be offered to patients with chemotherapy-associated anemia whose cancer treatment is not curative in intent and whose hemoglobin (HgB) has declined to <10 g/dL.
  • RBC transfusion is also an option.
  • ESAs should not be offered to patients with chemotherapy-associated anemia whose cancer treatment is curative in intent.
  • ESAs should not be offered to most patients with nonchemotherapy-associated anemia.
  • ESAs may be offered to patients with lower risk myelodysplastic syndromes and a serum erythropoietin level ≤500 IU/L.
  • In patients with myeloma, non-Hodgkin lymphoma, or chronic lymphocytic leukemia, clinicians should observe the hematologic response to cancer treatment before considering an ESA.
  • Before offering an ESA, clinicians should conduct an appropriate history, physical examination, and diagnostic tests to identify alternative causes of anemia aside from chemotherapy or an underlying hematopoietic malignancy.
    (Bohlius et al., 2019)

A medication guide explaining the risks and benefits of ESAs must be provided to all patients receiving ESAs. Only hospitals and healthcare professionals who have enrolled in and completed a special training program on ESAs are permitted to prescribe and dispense ESAs to patients with cancer.

ANOREXIA-CACHEXIA

Anorexia is loss of appetite, which may be related to both physiologic and psychological factors. Cachexia is a malnutrition syndrome that includes anorexia; early satiety (feeling of fullness after only a few mouthfuls of food); weight loss; anemia; weakness; and alterations in taste and in metabolism of proteins, lipids, and carbohydrates. Cachexia results in wasting and emaciation and is one of the leading causes of death in cancer patients.

HYPERCALCEMIA

Hypercalcemia is an elevated level of serum calcium and the most common life-threatening metabolic disorder associated with cancer; it occurs in 10%–20% of cancer patients at any stage of the malignancy.

Some types of cancerous tumors (particularly lung and breast tumors and multiple myeloma) as well as bone metastases produce a protein that acts as excess amounts of parathyroid hormone. When serum calcium levels exceed the kidneys’ ability to excrete the excess calcium, nausea and vomiting, constipation, muscle weakness, and dysrhythmias result. Diagnosis and timely interventions can be lifesaving in the short term and may improve the patient’s compliance with primary and supportive treatments as well as improve quality of life.

Untreated hypercalcemia leads to loss of consciousness, coma, and death. Depending on the therapeutic goals determined by the patient, the family, and the responsible clinicians, this course of events may represent a preferred timing and/or mode of death when compared with a more prolonged death from advancing metastatic disease. It is important to consider this option long before the onset of hypercalcemia or other metabolic abnormalities that impair cognition so that the patient is involved in the decision-making (Canadian Cancer Society, 2022).

PLEURAL EFFUSION

Pleural effusion is the accumulation of fluid in the pleural space, which can cause pain and difficult breathing. Thoracentesis (needle aspiration) to drain the fluid, which may be a liter or more, relieves the pain and facilitates breathing.

The Patient Who Has Dementia

Among hospice patients, 44.5% have a diagnosis of Alzheimer’s or other dementias, sometimes in addition to other diseases (CDC, 2022). The requirements for dementia patients to be admitted to hospice are the same as for other patients: a physician’s signed opinion that the patient has less than six months to live.

Near the end of life, dementia patients may experience agitation, eating problems, breathlessness, psychosis, depression, and delirium that may require judicious use of psychopharmacology. Patients often experience pain but may only be able to communicate this through behavioral changes such as uncharacteristic irritability or withdrawal, increased vital signs, and pained facial expressions.

Psychiatric management for such patients fits well with palliative care. Cross-training mental health with palliative care nurses improves the delivery of care and outcomes for dementia patients. The palliative care approach emphasizes relieving suffering. Applying this philosophy to advanced dementia acknowledges that the patient has a limited life expectancy and is not likely to benefit from an aggressive approach to comorbid conditions (Eisenmann et al., 2020).

Decisions about end-of-life care for people with Alzheimer’s disease or other dementias should be made as soon as possible after diagnosis while the patient is able to express personal wishes and participate in decisions.

Referral to the local chapter of the Alzheimer’s Association can help families find attorneys who specialize in elder law or estate planning. This referral should not be made abruptly but as a suggestion, emphasizing that every adult, regardless of health status, should make such a plan. This helps ensure that an individual’s wishes are respected in end-of-life care and in the disposition of property after death. Otherwise, families will need to make difficult decisions without knowing the patient’s wishes. Care must be taken to ensure that those involved in elder law and estate planning are well-informed and honest.

PAIN MANAGEMENT

Chronic pain is as prevalent among people with dementia (almost half) as among older adults in general. Failure to detect pain is especially apparent among those with severe cognitive impairment. Patients with dementia may not always be able to verbally communicate their pain. Verbal and visual self-report scales; face pictures; and bedside observation of posture, guarding, facial expressions, and behavior during usual activities may indicate an increase in the pain level (Eisenmann et al., 2020).

NUTRITION AND HYDRATION

In the late stages of dementia, patients may become unable to consume enough orally to prevent weight loss. This may be related to poor swallowing (dysphagia), pain, lack of appetite, and a choking cough after eating. Late-stage dementia patients lose significant amounts of body weight. When the patient loses the ability to swallow, they are considered terminal. This is a normal occurrence in the final stages of Alzheimer’s disease. Most patients with advanced dementia have a low metabolic rate due to physical inactivity. If they are maintaining a constant body weight, this rules out starvation and any medical indication for tube feeding. Weight loss can affect the immune system and make it more difficult for the patient to fight disease (Alzheimer’s Society, 2022).

If the patient’s advance directive indicates that they do not want artificial nutrition and hydration (ANH), caregivers and health professionals must respect that decision. However, if the decision was not made earlier, the patient’s surrogate or proxy decision maker, together with the physician and other members of the healthcare team, must decide whether to initiate tube feedings. When nurses and other healthcare practitioners are well-informed about ANH issues, they are able to guide family members who have to make decisions for their older relative with dementia.

Families of people with advanced dementia are counseled that their loved ones are unlikely to benefit from tube feeding, either in terms of survival or quality of life. Based on multiple studies in patients with advanced dementia, tube feeding has not been found to improve survival time, reduce mortality risk, or reduce the incidence of pressure ulcers (Akdeniz et al., 2021).

The Patient Who Has HIV/AIDS

In 2019 in the United States, there were an estimated 36,398 newly diagnosed people ages 13 and older with HIV infection and nearly 5,115 deaths among those with HIV infection (CDC, 2022b).

More effective treatments for HIV/AIDS and for opportunistic infections have made the disease trajectory far less predictable. This has increased the difficulty of making decisions about advance care and end-of-life issues. Although patients with HIV/AIDS agree that advance care planning is important to clarify end-of-life issues, most stated that they have not signed advance directives and that their families were not aware of their wishes.

Older adults with AIDS develop multiple medical conditions. In advanced AIDS, the patient may suffer both the late effects of the disease itself as well as treatment-related toxic effects. The combined effects include fatigue, weakness, memory loss, and continuous diarrhea, which together necessitate around-the-clock care. If family or friends are unavailable to provide care, the services of home health aides are required. These aides must be informed about whether the patient has a DNAR order in effect and whether the patient wishes to be hospitalized (Pahuja et al., 2021).

The person living with advanced AIDS has some of the same psychosocial concerns as patients with any terminal illness, including financial issues, bereavement issues, and fear of death. In addition, the individual may have unique issues related to HIV/AIDS, which can include:

  • Stigmatization related to HIV/AIDS
  • Fear of contagion
  • Fear of social isolation
  • Poor quality of treatment due to refusal of care by healthcare providers
  • Fear of being judged negatively
  • Fear of disclosure of one’s HIV status
    (CDC, 2022b)

Many lack the traditional support systems of friends and families. Friends may be HIV-infected themselves. Others may be afraid of contagion, based on ignorance about HIV transmission or unresolved homophobia. Families may live far away, since many people with AIDS have migrated to large urban areas that are more tolerant of nontraditional lifestyles, perhaps leaving them without a support system or socially isolated when their disease progresses. Persons may lose their jobs or not be able to obtain other work.

One-on-one counseling or a grief support group can help the bereaved patient and afford an opportunity for caregivers to discuss their own concerns and fears about the death of a friend or loved one.

Dying Children and Their Families

Learning that their child has a life-threatening illness and preparing a child for death is one of the most unnatural and difficult events in any parent’s life. Yet each year parents across the United States confront this tragedy, as 50,000 children die from life-threatening conditions: extreme prematurity, severe birth defects and congenital anomalies, cancer, HIV/AIDS, progressive metabolic disorders, and other diseases and disorders. The U.S. infant mortality rate (death occurring before the first birthday, generally from conditions existing at birth) was 20,297 in 2019 (USA Facts, 2022).

The remarkable resilience of children can make it difficult to predict whether treatment of life-threatening conditions will end in cure or death. More than half a million children in the United States are coping with complex chronic and life-threatening conditions. These children and their families need and deserve palliative care beginning at the time of diagnosis so that treatment is not limited to the disease process itself. This gives families more time to cope with the possibility that their child will die even as they hope for cure.

If it becomes clear that cure is no longer possible, the child may be able to receive hospice care at home rather than in the hospital. Conveying to the child that they will not be alone as they near the end and that parental support and love will continue even afterward can be most helpful to a dying child (LLS, 2022).

COMFORT CARE AND PAIN MANAGEMENT

Physical care of the child at end of life is focused on comfort, using the least invasive procedures while protecting privacy and dignity. A child with terminal illness has the same physical needs as any seriously ill child, including pain management, regular sleep and rest, nutrition, maintenance of bowel and bladder function, good respiratory function, and skin care. Additionally, several studies have shown a high degree of symptom burden in children with terminal illness in the last few weeks of life. These symptoms include pain, dyspnea, fatigue, lack of appetite, nausea and vomiting, constipation, and changes in sleep patterns (Vitas Healthcare, n.d.).

Children who are dying share the same fear of pain as adults with terminal illness. Infants are believed to be even more sensitive to pain due to underdeveloped inhibitory pain tracts (Vitas Healthcare, n.d.). Care providers must talk with the family about pain management before the need becomes severe.

For most children, pain control can be achieved using standard dosing with medications such as opioids and benzodiazepines (Vitas Healthcare, n.d.). Families who express concerns about addiction from narcotic pain medication need to be reassured that there is no evidence to support the idea. Like adults, children may develop a tolerance to sedatives and opioid medications, so that the dosage or the choice of drugs may need to be changed.

Parents are also greatly concerned that their child does not suffer at the end of life. When pain or other symptoms are not treated or are treated unsuccessfully in their dying child, parents are likely to experience long-term distress.

COMMUNICATION WITH PARENTS

Parents of children who have life-threatening conditions want to be kept informed about their child’s condition and what to expect throughout the course of the illness. They may also want information about caring for their child at home and about how to support siblings of the ill child.

Effective, timely, understandable, and sensitive communication is essential in all aspects of children’s palliative care. Effective communication leads to improved trust among the patient, their family, and healthcare professionals. Linguistic, religious, and cultural differences may prove especially challenging in pediatric palliative care. Limitations in time and staffing as well as inadequate education can also be barriers to good communication. These issues can interfere with parents’ ability to participate fully in their child’s care and contribute to frustration, anger, and sadness for parents long after their child’s death.

Therefore, healthcare practitioners need to ensure that all parents receive clear, factual information and that the family can understand and respond to questions and emotional concerns. This fosters trust in the relationship and reduces distress and anxiety in the parents and family (Sawin et al., 2019).

END-OF-LIFE ISSUES FOR INFANTS

Advances in medicine, surgery, technology, and skilled nursing care have vastly improved the survival of premature and other high-risk infants. However, sometimes the very best care and the strongest hopes and prayers are not enough to save these fragile lives.

The child who dies before the age of 1 year will likely have been hospitalized for much of their life. The challenge for healthcare professionals is to make that time as comfortable and meaningful as possible for the infant and the family, supporting their need to be together, to touch each other, to create shared memories, and to prepare for the loss ahead. For instance, taking photographs of the infant with family members is important, particularly for those parents whose infant will never get to go home with them.

Parents generally seek a healthcare provider who can provide an overview on the infant’s condition every day. This helps avoid misunderstandings from fragmentary information. Parents need to know that it is okay to ask questions and expect honest, understandable answers about what is going on. Other children in the family as well as the grandparents also need to be involved.

COMMUNICATING WITH CHILDREN

It is essential to be honest when discussing end-of-life issues with a child, but also to refrain from scaring the child (LLS, 2022). The first consideration is to determine the appropriate developmental level of the child for ideal communication. Successful communication with a child may increase cooperation, decrease anxiety, and normalize discussions. Effective communication with the dying child and the family recognizes interpersonal boundaries and is demonstrated as competent, thoughtful, and caring (Sawin et al., 2019).

It is important for the dying child and the family to talk about death with each other, although it can be difficult and painful. Parents may worry that talking about death will cause the child to lose hope and thus the will to live. But keeping the diagnosis secret denies the child’s right to express feelings, fears, and questions. Children pick up cues from parental and/or sibling behavior that something bad is going to happen, and they need to express their feelings.

There is documented evidence that all patients, even very young children, know they are dying and that they are able to recognize the exceptional distress among family and caregivers around them when death becomes close. By age 6, children begin to recognize the fact of death and what it means. By age 10, children know that death is final. References to its imminence can be quite direct and explicit, however most pediatric patients can tell when adults are having difficulty talking to them about end-of-life issues, death, and dying, and they begin to feel isolated and alienated. If an open and honest dialogue has been established from the beginning, it will be reflected in the willingness of the child or adolescent to talk about fears regarding death (LLS, 2022).

Keeping the diagnosis secret also risks having someone else reveal the information, eroding the child’s trust in the parents. Healthcare professionals can offer support and guidance to the parents by asking, “How will you tell your child the diagnosis?” and then suggesting how and what to say based on the child’s age. Naming the illness helps explain what to expect in terms of procedures and possible outcomes. Once the child learns the diagnosis, they may choose not to talk about death. Parents and healthcare professionals must respect that wish.

Communicating with children about death involves more than just words. It is important to ask the child questions about what they understand and what they are feeling. Reassurances are given that all their feelings are acceptable, even sadness, anger, and tears (LLS, 2022). Healthcare professionals can assess the child’s body language and encourage expressive outlets for feelings, such as drawing; play with dolls, puppets, or stuffed animals; writing stories; or working with modeling clay. Children with a terminal illness also still enjoy age-appropriate play activities—games, drawing, coloring, seeing friends. School-age children who are able to attend classes can be encouraged to do so to maintain a sense of normalcy and stay connected with their peer group. Frequent absences are common, but some children want to continue their studies at home as long as possible.

Both the child and the family generally fear what the actual death will be like, particularly whether it will be painful. The child fears dying alone; the family fears not being with the child when death occurs. Having family members nearby enhances the child’s feelings of security and safety. Physical contact—touching, hugging, and holding hands—is comforting and helps the child feel more secure. When parents or siblings need to leave, it helps to tell the child when they will be back.

AGE-RELATED CONCEPTS OF DEATH IN CHILDREN
Age Concepts
(Stanford Medicine, 2022)
Infant
  • No response to loss due to undeveloped memory capacity for specific personal relationships.
  • No ability to conceptualize death.
  • Expresses fear by crying.
  • Consistent routine is important for infant and caregivers.
Older infant
  • Loss, like separation, may be felt, if at all, as a vague absence or experiential sense of “something different.”
  • A baby who is terminally ill will need as much physical and emotional care as any age group.
Toddler/preschool
  • Death of primary caregiver usually results in displeasure and depression.
  • No ability to understand or attribute meaning to a loss.
  • Can be influenced by a parent’s tense and emotional grief reactions to death.
  • Anxious and afraid because those closest to them are sad.
  • Death understood as temporary and reversible; even if has experienced death, does not see it as permanent.
  • Often told someone “went to heaven.”
  • Belief that dead persons or animals are asleep and can be awakened or are gone and will be back.
  • May see illness as a punishment.
School-age
  • Developing a clearer understanding of death from age 6 to 8 years.
  • Increased interest in the physical and biological aspects of death.
  • “Magical thinking” predominates, with the belief that thoughts can make things happen, even accidents and death.
  • Concept of death is very similar to an adult’s.
  • Death is not reversible or temporary but only happens to other people.
  • Death often thought of as a person or an angel, skeleton, or ghost figure.
  • Concept of death expands to that held in adult life.
  • Fully developed awareness of the possibility of personal death.
Teen
  • Influenced by cultural and religious influences.
  • Influenced by past experiences.
  • Death now viewed abstractly and subjectively.
  • Strong egocentrism and a tendency to think of oneself as immortal.
  • If dying, may feel as if they no longer fit in with their peers; need support and someone to listen to them.
CASE

Ryan is a 6-year-old boy with terminal cancer who has been undergoing chemotherapy off and on for the past three years. He is now considered end-stage and is being discharged from the Children’s Hospital pediatric hematology/oncology (Hem/Onc) unit to go home for hospice care. His oncologist, Hem/Onc nurse, and parents have explained the situation honestly and at a level he can understand, creating an open climate where he feels able to ask any questions or express any concerns.

Ryan is happy to be going home and in knowing that he will not have to come back to the hospital or undergo chemotherapy again. He understands that he will soon die and believes he will go to heaven and be able to “look down” on his family and friends. He tells his primary nurse good-bye and thanks her. He has told his parents he is afraid of being alone when “dead comes,” and they have reassured him that someone from his family will be with him at all times. An organization called the Carousel Fund in his hometown provides funds to families with catastrophic illnesses so at least one parent can be with Ryan.

LEGAL ISSUES

The legal responsibility for decisions about a child’s treatment rests with parents. However, clinicians should encourage parents to involve the child in decisions about continuing treatment aimed either at cure or at moving to palliative care. Adolescents may have very definite ideas about the course their treatment should take.

Both the child and the family must understand what palliative care means, for example, the risks as well as the potential benefit of CPR. Clinicians should explain that “no code” does not mean “no care” but just a different kind of care aimed at comfort and maximum enjoyment of the time they have left.

FINANCIAL ISSUES

Children are not covered by the Medicare hospice benefit. Consequently, hospice care for children can impose a tremendous financial burden on families, which is one reason why so few children under age 17 receive hospice care.

Medicaid, a jointly funded federal-state health insurance program for people who need financial assistance for medical expenses, must provide home care services to people who receive federal income assistance such as Temporary Assistance to Needy Families (TANF, 2019). Medicaid coverage includes part-time nursing, home care aide services, and medical supplies and equipment. Information about coverage is available from local or state welfare offices, state health departments, state social services agencies, or the state Medicaid office.

BEREAVEMENT

Bereavement begins in the period before the child dies in the form of anticipatory grief and extends well beyond the time of death. Care of the family should extend into the bereavement period. Hospice generally offers support to bereaved family members for a year after the death of the patient. However, if the child dies in the hospital, there may not be a formal bereavement care program available.

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

Veterans

Most veterans die either at home, in a nursing home or assisted-living facility, or in a residential hospice. Veterans may receive hospice care through the Veterans Administration (VA). The VA may purchase hospice services from community providers to provide care in the home, a hospital, or a long-term care facility.

Veterans benefits include palliative care and hospice care, but some veterans may not know about or understand these benefits. All VA facilities have a Palliative Care Consult Team (PCCT) as a resource for hospice and palliative care provided in the VA facility and coordinated in the community. Although local VA medical centers have the flexibility to address end-of-life care according to veterans’ needs, national policy and standards stipulate that each VA facility have the following resources and services:

  • A designated hospice contact person who is part of an integrated network for local and national communications and information dissemination
  • Provision of needed hospice services in all settings
  • Inpatient hospice beds or access to them in the community
  • An interdisciplinary palliative care consultation team
  • Assistance with referrals to community hospices in its service area
  • Tracking of hospice and palliative care services provided to veterans in all settings
    (NHPCO, 2022d)

Veterans dying in the VA system may have a higher degree of social isolation, lack of family support, or lower income than those outside the system. In addition, military training may have created in them an attitude of stoicism and a barrier to admitting pain or requesting pain medication. On the other hand, being in a hospice with other veterans offers a camaraderie that can be comforting.

Showing respect for a veteran and acknowledging service to the country is a first step in establishing a relationship. Simply asking, “What branch of the service were you in?” can be a key assessment question. Other factors that influence experiences at the end of a veteran’s life include age, whether enlisted or drafted, rank, and combat or POW experience (We Honor Veterans, 2022).