End-of-Life Care for West Virginia Healthcare Professionals

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By Nancy Evans, BS

LEARNING OBJECTIVES

Upon completion of this course, you will be able to:

• Explain the principles and ethical challenges of palliative care and hospice.
• Discuss the essential elements of effective communication with patient and family.
• List pharmacologic and nonpharmacologic comfort measures for the dying patient.
• Assess psychosocial and emotional concerns of the patient and family.
• Discuss the needs of dying children and their parents.
• Describe care of the patient during the last hours.

Each year more than 2.4 million people die in the United States, and by 2040, the annual number of deaths will reach 4 million (U.S. Census Bureau, 2008). Ten percent die suddenly in an accident or from a fatal heart attack or stroke. However, most people require care over weeks or months as their health diminishes.

End-of-life care is important in West Virginia because it has the third highest median age of all states (40.5) and is second in the nation in the percent of its population over the age of 65 (15.8%) according to the U.S. Census Bureau.

PALLIATIVE CARE AND HOSPICE

Both palliative care and hospice in the United States originally focused on the care of cancer patients, but now both encompass care of patients with other severe illnesses such as kidney disease or heart disease.

Palliative Care

Palliative care is a recognized subspeciality by the American Board of Medical Specialties (ABMS). Its focus is on improving the quality of life of people facing serious illness. Palliative care emphasizes pain and symptom management, communication, and coordinated care. It can be provided alongside curative treatments.

A team of experts collaborate in providing palliative care. It may include doctors, nurses, social workers, chaplains, nutritionists, therapists, and others. These providers address the physical, intellectual, emotional, social, and spiritual needs of the patient and family.

Between 2000 and 2008, the number of palliative care programs in the United States increased more than 125% in hospitals with fifty or more beds, and now total nearly 1,500. West Virginia ranks 18th among the states, with 67% (or 20/30) of mid-size and large hospitals offering a palliative care program (CAPC, 2010).

Counties containing hospitals with a palliative care program (50+ beds). (Source: CAPC, 2010.)

Palliative care and hospice care are not the same. A recent statement from the Center to Advance Palliative Care (2009) clarifies that

[Palliative care] is not limited to end-of-life care, and it is not synonymous with hospice care. The goal of palliative care is to relieve the pain, symptoms, and stress of serious illness—whatever the prognosis. Palliative care is available to those undergoing curative treatments even at the early stages of a serious and complex illness.

Palliative care’s focus on communication in addition to pain and symptom management occurs long before the end of life. These are quality of life conversations that allow physicians to explore their patients’ values and goals. Patients facing serious illness may live for years. This is why palliative care is necessary for patients with chronic illnesses who want to remain in control of their lives and destiny.

Hospice

Hospice is considered the gold standard for end-of-life care. The central belief of hospice is that each person is entitled to a pain-free death with dignity and that families are entitled to the support necessary to allow that to happen.

Hospice care is also based on an interdisciplinary team approach that includes physicians, nurses, spiritual counselors, social workers, home health aides, therapists, and bereavement counselors. The team develops an individualized care plan to meet each patient’s needs for pain management and symptom control. When the patient is cared for at home, hospice staff is on-call 24 hours a day, 7 days a week.

Many people mistakenly think that hospice refers to a place. Although there are some residential hospice facilities, most hospice care takes place in the patient’s home or the home of a loved one, and less frequently in hospitals and nursing homes.

Hospice care is far less expensive than other types of end-of-life care (e.g., aggressive chemotherapy). Hospice patients are more often able to die at home. According to the National Hospice and Palliative Care Association, three fourths of the people who choose hospice care die at home, in a nursing home, or other residential facility.

The 2010 West Virginia Health Care Association Annual Report indicates that the number of patients served by hospice providers increased by 8% in the prior year. The state is served by thirteen free-standing, six hospital-based, and one home health-based hospice providers (WVHCA, 2010).

Hospice is not just for people with cancer. Any patient who is diagnosed with terminal illness is eligible for hospice care. In fact, more than half of those admitted to hospice in 2008 had a non-cancer diagnosis, such as heart disease, kidney disease, emphysema, Alzheimer’s or other dementia, HIV/AIDS, or an unspecified debility. While the vast majority of hospice patients are people over 65, some hospices have clinical staff with expertise in pediatric hospice care.

Many people think hospice care means “giving up,” that it will shorten survival. However, a study of more than 4,000 patients suggests the opposite—the mean survival was 29 days longer for hospice patients than for non-hospice patients. For hospice patients with congestive heart failure, lung cancer, and pancreatic cancer, the survival was significantly longer than for non-hospice patients with the same conditions (Connor et al., 2007).

West Virginia law requires nursing homes to provide eligible residents with information about hospice palliative care. The law states:

[W]hen the health status of a nursing home facility resident declines to the state of terminal illness or when the resident receives a physician's order for “comfort measures only,” the facility shall notify the resident with information about the option of receiving hospice palliative care. If a nursing home resident is incapacitated, the facility shall also notify any person who has been given the authority of guardian, a medical power of attorney, or health care surrogate over the resident, information stating that the resident has the option of receiving hospice palliative care. (Center for Health Ethics and Law, 2007)

LEGAL AND ETHICAL FACTORS IN END-OF-LIFE CARE

Physician Aid in Dying

The right-to-die movement in America is gaining public support, indicating widespread dissatisfaction with the quality of end-of-life care. The right-to-die concept includes assisted suicide (also called physician aid in dying (PAD)) and voluntary active euthanasia. In assisted suicide, the healthcare provider, usually a physician, provides the means to end life, such as a prescription for a lethal amount of drugs or the drugs themselves, or other measures, by a person who has knowledge of the patient’s intention (ANA, 1994; Brody, 1992). Voluntary active euthanasia is a deliberate act that causes death at the request of a person incapable of causing his or her own death.

Both nurses and physicians are confronted with requests for assistance in dying. However, this practice is legal in only three states—Montana, Oregon, and Washington—and the guidelines for practice are very stringent.

Palliative Sedation Therapy (PST)

Palliative sedation therapy (PST) is considered a last-resort option in end-of-life care. The National Hospice and Palliative Care Organization (NHPCO) defines palliative sedation as “the lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable” (Kirk & Mahon, 2010).

Palliative sedation therapy is controversial. Some opponents have incorrectly equated it with euthanasia. Euthanasia and PST are different in intention (relief of intolerable suffering in PST, killing the patient in euthanasia), in procedure (use of a sedative for symptom control in PST, use of a lethal agent in euthanasia), and in outcome (alleviation of suffering in PST, immediate death in euthanasia).

Two types of palliative sedation may be used in end-of-life care: proportionate palliative sedation (PPS) and palliative sedation to unconsciousness (PSU). In PPS, medications such as benzodiazepines are increased gradually together with other symptom-relieving measures until suffering is relieved during both waking and sleeping hours. For most patients, the effect of PPS will be less than total unconsciousness, allowing the patient to rest comfortably but to be aroused (Quill et al., 2009).

In PSU, unconsciousness is the intended goal of sedation rather than a side effect. Medications are increased rapidly over minutes and hours to achieve unconsciousness and left at that level until death occurs. PSU is usually administered when the imminently dying patient finds severe physical symptoms intolerable despite state-of-the-art palliative care, for example, in the case of severe refractory bleeding or inability to swallow secretions.

Removing or Deactivating Cardiovascular Implants

A new consensus statement from the Heart Rhythm Society (2010) suggests that patients nearing the end of life (or their healthcare proxy) have the right to decide whether to have their pacemakers or other cardiovascular implants removed or deactivated. It explicitly states that removing an implanted cardiovascular device near the end of life “is not physician-assisted suicide or euthanasia.” However, it also states that physicians or other caregivers cannot be compelled to carry out a procedure that conflicts with their ethical values. In such cases, the physician cannot abandon the patient but rather should refer patients to a colleague willing to carry out the task.

Advance Directives

Advance medical directives are documents containing patients’ oral and written expressions of their preferences about future medical care if they should become unable to speak for themselves. Federal law (the Patient Self-Determination Act) requires hospitals to inform patients that they have the right to complete an advance directive. Advance directives are regulated by state law and therefore may differ from state to state.

West Virginia law recognizes two types of written advance directives for healthcare decision-making: the living will and the medical power of attorney (also called a durable power of attorney for healthcare, a healthcare proxy, or declaration or appointment of a healthcare agent). The living will instructs healthcare providers how a patient wants to be treated in the event of terminal illness or permanent unconsciousness. The medical power of attorney names a person to make certain medical decisions for a patient who is unable to make them for him or herself.

A statewide survey indicates that 49% of West Virginians have filled out at least one advance directive (WVCEOLC, 2010b). This figure is the highest among states reporting such numbers and significantly above than the national average, which ranges from 18%–36%, according to a 2008 U.S. Department of Health and Human Services report.

Physican Orders for Scope of Treatment (POST)

The West Virginia Health Care Decisions Act incorporated the Physician Orders for Scope of Treatment (POST) form into the West Virginia Code. The POST form contains physician orders detailing CPR code or no-code status; level of intervention (comfort care, intermediate, or full treatment); and use or withholding of antibiotics and feeding tubes (WVCEOLC, 2010d). Completion of the standardized hot-pink POST forms is not required but is highly recommended for clients entering a skilled nursing facility or a hospice program. The legislation provides legal protection for healthcare providers, who are not subject to civil or criminal liability for good faith compliance with or reliance upon POST forms. Information and a sample POST form are available online at the West Virginia Center for End-of-Life Care website: http://www.wvendoflife.org/Resources---Links/Forms/.

Do-Not-Attempt-Resuscitation (DNAR) Orders

Do-not-attempt-resuscitation orders (formerly known as “do-not-resuscitate orders”) reflect the minimal likelihood of successful cardiopulmonary resuscitation (CPR). Although the patient (or family) must ultimately decide about whether to attempt CPR, healthcare providers need to explain that withholding CPR does not equate with letting someone die. Rather, as one physician suggested, a DNAR order should be considered an Allow Natural Death order, “which is the right thing to do in many cases” (Borenstein, 2008).

The DNAR order should be readily available in the event of an emergency to ensure that the patient’s wishes will be honored. It should be posted prominently, either on the head or foot of the bed, or if the patient is at home, on the refrigerator. The specifics of the order should also be carefully documented in the patient’s chart. Some patients prefer the additional safeguard of wearing a bracelet or necklace to alert care providers that a DNAR order is in force.

Mechanical Ventilation

Decisions about mechanical ventilation (MV) can be spelled out in the patient’s advance directive. Some patients choose to forgo MV, believing that it merely prolongs the dying process. Others choose to have MV when they can no longer breathe on their own. Choosing MV may reflect the erroneous belief that this life-sustaining treatment can improve the patient’s prognosis.

Depending on the physician, choosing MV may affect the physician’s certification of the patient as terminal and therefore eligible for hospice benefits. Once MV is started, the decision to withdraw it may present a legal and ethical controversy for the physician and the family. In some cases, withdrawal of this life support may require a court order.

Artificial Nutrition and Hydration (ANH)

Decisions about whether to have ANH involve weighing the potential benefit and the burden to the patient. Clinicians need to help families understand that forgoing ANH is not “killing” or “starving” the patient. Although ANH may extend the patient’s life a few days or weeks, there is considerable physical and emotional trauma in inserting a nasogastric tube or undergoing surgery to place a gastrostomy (feeding) tube, plus increased risk of infection and increased diarrhea.

Research suggests that people who choose not to have ANH do not suffer due to hunger or thirst. Studies also indicate that forgoing artificial hydration increases the body’s production of endorphins (natural pain-relieving hormones), making the patient more comfortable and less likely to experience pain (Lynn & Harrold, 1999).

EFFECTIVE COMMUNICATION WITH PATIENTS AND FAMILIES

Although talking about illness and death can be difficult for both health professionals and patients, studies show that most patients want to have this discussion. Sharing bad news while maintaining hope is a delicate balance that takes practice to achieve. Health professionals need to support the patient’s and the family’s hopes for prolonging life as well as their hopes for peace and dignity throughout illness, dying, and death. Patients should never be told, “There’s nothing more we can do,” because this discounts what can be done to improve the quality of whatever life remains.

When and How to Talk about Death

Many patients need permission, or invitation, to express their values and preferences about end-of-life care. One way to broach the subject is with an open-ended question such as, “When you think about getting very sick, what worries you the most?” Another way to open the conversation is to say: “Many patients with this condition tell me they think about dying. They have questions about this. How about you?” (Pantilat, 2001). Making empathic statements gives the patient an opportunity to express needs and concerns and shows the healthcare provider’s concern for the patient. Feeling that your doctor or nurse truly cares about you evokes trust, confidence, and hope.

Raising the topic of advance directives can also help to open the discussion of what the patient wants, needs, expects, and fears during this final phase of life. The following questions may be helpful:

• If you were to get so sick that you could not talk to me directly, whom should I talk with to help me make decisions about your care?
• Does this person know about this responsibility?
• Does he or she know what you want?
• What would you want?
• Have you written down what you want?

The physician is most likely to initiate the conversation, but nurses and other healthcare providers should also be prepared to discuss these issues as needs and circumstances change.

CLINICAL INDICATIONS FOR DISCUSSING END-OF-LIFE CARE

Urgent Indications	Routine Indications
Source: Quill, 2000.
Imminent death	Discussing prognosis
Talk about wanting to die	Discussing treatment with low probability of success
Inquiries about hospice or palliative care	Discussing hopes and fears
Recent hospitalization for severe progressive illness	Physician would not be surprised if the patient died in 6–12 months
Severe suffering and poor prognosis

Both patient and family need timely, clear information about prognosis. It is difficult, and often impossible, for clinicians to answer questions about “how long,” but it is possible to describe the probable course of a particular illness in understandable terms. This helps patients do what is most important to them, such as making a will, seeing family and friends, and telling loved ones. Clinicians tend to be overly optimistic when discussing prognosis, which can delay referral to hospice and cause unnecessary pain and suffering for the patient and family.

Explicitly discussing death helps the patient express fears and concerns about the dying process and allows the clinician to address them directly. For example, the patient may say, “I don’t want to die hooked up to machines” or “I don’t want any heroics.” This is an opportunity to allay that concern, for instance, by talking about hospice care.

Cultural Sensitivity

Approximately one third of America’s increasingly diverse population is composed of ethnic minorities whose values and beliefs may differ sharply from those of white Americans of European ancestry. These differences occur in at least three interrelated dimensions: communication of “bad news,” locus of decision making, and attitudes toward advance directives and end-of-life care (Searight & Gafford, 2005).

Language differences, for instance, can lead to misunderstanding and misinformation that affect medical decision making. For example, hospice translates to hospicio in Spanish, meaning “orphanage” or “place for poor people.” One caregiver told a researcher, “I didn’t know what hospice was. I thought it was a place worse than a hospital” (Kreling et al., 2010).

Whereas the mainstream U.S. model of end-of-life care values autonomy and “truth telling,” healthcare models in other cultures value beneficence, which includes protecting the patient from bad news about serious illness. In these cultures, disclosure of serious illness may be considered disrespectful, impolite, or even harmful to the patient. Some cultures emphasize the family versus the individual. Protecting the patient from bad news means that decisions about care will be made by the family, by the physician, or by family/physician collaboration.

MANAGEMENT OF PAIN AND OTHER SYMPTOMS

Pain has been called the fifth vital sign. Many people who have come to terms with their own mortality still fear the possibility of a painful death, and that fear is justified. Between 70% and 90% of people with advanced cancer experience pain, particularly those who die in nursing homes. Patients with other chronic diseases such as AIDS, sickle cell disease, and arthritis also suffer extreme pain, which may be ineffectively treated. Experts estimate that, when properly treated, almost all of these patients could gain relief from pain.

The patient’s preferences should define the goal of pain management. Some patients will choose to be completely pain-free, even if it means sedation. Others will choose only to control pain enough so that they can continue to function with alertness. If pain becomes severe at any time, but particularly in the last days or hours of life, it should be treated around-the-clock.

Pain not only hurts, but it is also physically and emotionally debilitating. Severe chronic pain can cause depression, anxiety, fear, diminished appetite, impaired sleep, and sometimes thoughts of suicide. When pain is relieved, many of these symptoms disappear. The patient then can focus on other important end-of-life issues, such as unfinished business with family and friends or spiritual or religious concerns.

Patients have a right to relief from pain. The Joint Commission requires that hospitals and other healthcare facilities regularly assess, monitor, and manage pain in all patients. Those facilities that fail to do so risk losing accreditation. Until all health professionals learn the principles of pain management explicit to palliative care, however, patients will continue to suffer needlessly.

Inadequate education of health professionals in pain management is only one reason why patients suffer. The other is general mistrust about the use of narcotic analgesics and worry about addiction or overdosing on these medications. They also may consider requests for pain medication as “giving up” or “giving in” to their disease. Clinicians can correct these myths and misinformation and reassure patients that managing their pain is fundamental to end-of-life care.

Assessing Pain

Effective pain management begins with assessment of the patient’s pain. Because pain is a subjective experience, it is important to ask the patient to describe the pain in terms of location, intensity, and character. There are a number of pain assessment tools available; healthcare providers should consult their agency protocols.

Pain perception varies from person to person depending on age, culture, emotional status, past experiences with pain, and the source and meaning of the pain. Some cultures dictate stoicism when experiencing pain, which may cause people not to admit pain or request medication. Men are more likely to “tough it out” because of cultural and gender attitudes.

Older adults may have a higher pain threshold than younger people or children due to normal age-related changes in neurophysiology. Because of their higher pain threshold, however, older patients are at risk for undertreatment of pain. They may have multiple chronic diseases and sources of pain as well as complex medication regimens that increase the risk of drug-drug and drug-disease interactions.

Visual, hearing, motor, and cognitive impairments can impede communication about patient’s pain. Anxiety and depression can exacerbate the pain experience, as can fatigue and sleeplessness. Untreated pain can then cause further sleeplessness, which leads to more fatigue, setting up a cycle of suffering.

Knowing the source of pain can be a relief in itself, particularly if the patient has imagined a worst-case scenario and the source of the pain turns out to be a minor correctible condition. The meaning of pain also affects the patient’s perception of it. For example, the patient who considers pain as “God’s punishment for past sins” may feel that the pain is simply a necessary price to pay for bad behavior.

Pain should be reassessed frequently and management efficacy reassessed when patients are transferred from home to hospital, nursing home, or hospice (NCI, 2010a).

Pain Medications

Medications can make a drastic difference in the lives of those suffering with pain and they comprise an important aspect to end-of-life care in many instances. (A detailed description of pain medications is beyond the scope of this course. See also the Wild Iris course “Pain Management: Cancer Pain and Pain at the End of Life.”)

THREE-STEP LADDER APPROACH

The World Health Organization developed a three-step ladder approach to pain management (see figure).

The WHO three-step dosing model for the treatment of pain. (Source: Courtesy BiomedCentral.com.)

Using this guideline for managing pain does not mandate sequential use, particularly in terminal illness. Patients with severe pain may need to begin with step 3.

Step 1 analgesics include aspirin, acetaminophen, and nonsteroidal anti-inflammatories. All pain medications, even step 1 analgesics, have side effects. Nonsteroidal anti-inflammatory drugs (NSAIDs) can cause gastrointestinal bleeding. Acetaminophen can be toxic at doses exceeding 4g in 24 hours, particularly in patients with compromised liver function.

Step 2 and step 3 analgesics include the opioids, such as codeine, fentanyl, hydrocodone, hydromorphone, morphine, and oxycodone. In step 2, the opioid is combined with either acetaminophen or aspirin. In step 3, the opioid and a step-1 drug are combined with adjuvant drugs such as antidepressants.

ADJUVANT THERAPIES

Adjuvant therapies for intractable pain include radiation therapy (to shrink tumors or relieve bone pain), radiofrequency ablation for bone pain (CITE), surgery to debulk a tumor, nerve blocks, or intrathecal pumps to deliver large doses of opioids without systemic sedative effects.

SIDE EFFECTS

Skilled use of opioids affords effective pain relief to most patients. Like all drugs, however, they have side effects, some of which can be uncomfortable or even painful in themselves. They include drowsiness, nausea and vomiting, dyspnea (shortness of breath), dry mouth, and constipation. Some side effects ameliorate after a few days, and most can be prevented or treated successfully.

Nonpharmacologic Measures

Not all pain relief comes from medications. Other methods, some of them simple, may increase patient comfort and well-being as they augment the effects of drugs. For example, massage or application of heat or cold may help relieve musculoskeletal pain. Repositioning the patient can sometimes relieve pain. Physical therapy may also be beneficial.

Complementary therapies such as acupuncture, guided imagery, biofeedback, hypnosis, progressive muscle relaxation (e.g., listening to audiotapes of relaxation techniques), meditation, and music therapy can also be helpful, not only in relieving pain but also in relieving emotional and psychological distress. Psychotherapy, particularly for patients suffering from depression, can have a positive effect on patient’s perception of pain and response to pain medications. Support groups and pastoral counseling may also be helpful to some patients by reducing psychological distress.

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 pyscho-social support from health professionals and loved ones are essential during this crisis.

Common End-of-Life Emotions

The person diagnosed with a terminal illness experiences a host of emotions, including fear, anxiety, depression, anger, and feelings of loss and grief. These 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 the life remaining and help the patient resolve important issues with family and friends.

The most common fears are those of death itself, of pain, of dying alone, and of 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. 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 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.

Sadness and grief are normal reactions to learning that one has a terminal illness, and some patients experience true clinical depression. Health professionals need to distinguish between normal sadness and the level of depression in each patient. The following factors may suggest the need for early intervention to treat depression as part of end-of-life care:

• History of depression
• Weak support system (not married, few friends, solitary work environment)
• Evidence of persistent irrational beliefs or negative thinking regarding the diagnosis
• Greater dysfunction related to the illness
  (NCI, 2007)

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 role and lifestyle, and the prospect of death. Validating that anger is a normal reaction to terminal illness can open a discussion of how to deal with the anger and make the most of the time remaining.

Aging and the end of life involve a succession of losses, concluding with the ultimate loss—loss of self. The losses can 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 is the normal human response to loss, and it is universal, individual, and unpredictable. Researchers have described various stages of grief, but people do not always move through such stages sequentially or predictably. Instead, each person progresses at his or her own pace and may recycle through one or more of the stages, which include:

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

Bereavement is being deprived of someone through death and the feeling of desolation that follows. 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.

Bereavement options for families include grief support groups and one-on-one counseling by a psychologist, psychiatrist, clinical social worker, or clergyperson. Many online support groups are also available but should be used as an adjunct to in-person therapy rather than as a substitute. 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.

Family Caregiver Burdens

Family caregivers 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. Rabow and colleagues (2004) identified five burdens of family caregiving that health professionals should be aware of when communicating and interacting with the family:

• Time and logistics: Caring for a spouse or other family member with serious illness is time-consuming and demanding. Coordinating medications, treatments, and social services and possibly tending to the needs of other family members can be overwhelming and exhausting.
• 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. Clinicians can anticipate this risk and offer assistance with physically strenuous aspects of care.
• Financial costs: Many caregivers must give up their paying job or make major life changes. Nearly one third of caregivers lose most or all of their family savings due to a loved one’s illness.
• Emotional burdens and mental 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.
• Physical health risks: Health problems related to caregiving can include increased risk of cancer as well as increased mortality, particularly among older adults (Cameron et al., 2002; Christakis & Allison, 2006). Referring the patient for respite care can offer caregivers much needed relief and time to take care of themselves.

DYING CHILDREN AND THEIR FAMILIES

Learning that their child has a life-threatening illness 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. More than 28,000 infants die before their first birthday, generally from conditions existing at birth (CDC, 2010).

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.

Communicating with Parents and Children

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. Linguistic and cultural differences may prove especially challenging in pediatric palliative care. 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” (Davies et al., 2010).

The dying child and the family need to try to talk about death with each other, although it can be difficult and painful. Parents 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.

A Swedish study of more than 400 parents who had lost a child to cancer found that none of the parents who talked with their child about death regretted it. More than one fourth of those parents who sensed that their child was aware of his or her imminent death but did not talk with their child about death regretted avoiding this discussion (Kreicbergs et al., 2004).

Health 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 tell the parents 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, he or she may choose not to talk about death. Parents and health professionals need to respect that wish.

AGE-RELATED CONCEPTS OF DEATH IN CHILDREN

Age	Concept of Death	Interventions
Source: Hospice Net, 2010.
0–3 years	None	Provide physical comfort, familiar people, favorite toys, and consistent care. Use simple language to communicate.
3–5 years	Believes death not final but a kind of sleep, which can be caused by "bad" thoughts. Does not see death as personal.	Minimize separation from parents. Explain that illness is not punishment. Assess for guilty feelings and reassure if needed. Use realistic language (i.e., “dead”; “dying”)
5–7 years	Begins to understand death as final but does not see it as natural. May believe death caused by the devil, God, a ghost; may see it as abandonment by the person who died.	Assess fears of abandonment. Be truthful in answering questions and explaining details.
8–12 years	Developing adult concepts of death. Understands that death can be personal and permanent. Asks about physiology of death.	Help child achieve control and mastery. Maintain access to peers. Involve child in decision-making.
12–18 years	Understands the concept of "not being." Sees death in terms of separation and loss of security.	Reinforce child's self-esteem. Encourage expression of feelings. Respect child's privacy. Promote independence, participation in normal activities, and access to peers. Be truthful. Continue to involve child in decision-making.

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.

DEATH OF THE PATIENT

Care during the last hours of life, called “active dying,” can have profound effects on the patient, the family, and healthcare providers who attend the dying.

Signs of Imminent Death

Certain signs and symptoms indicate when death is near (see table below). Not every patient experiences each of these signs and symptoms, and the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. The final stage of dying may take from 24 hours to as long as 10–14 days.

When it is apparent that death is imminent, health professionals need to alert the family and confirm the goals of care. This discussion should be documented in the patient’s chart, including the observation that the patient is dying.

SIGNS AND SYMPTOMS OF IMMINENT DEATH

Signs and Symptoms	Interventions
Source: NCI, 2002.
Drowsiness, increased sleep or unresponsiveness	When speaking, remember that the patient may be able to hear even if there is no response. Advise family members to address the patient as though he or she can hear. Do not shake the patient if he or she does not respond.
Confusion about time, place and/or identity of loved ones; hallucinations about people and places not present	Gently remind the patient of the time, date, and people who are present. Be calm and reassuring.
Decreased socialization and withdrawal	Speak to the patient directly and offer reassurance that he or she is not alone. The patient may need permission from the family to "let go."
Decreased need for food and fluids; loss of appetite	If the patient can swallow, offer ice chips, water, or juice. Keep the patient's mouth and lips moist with glycerin swabs and lip balm.
Loss of bladder or bowel control	Keep the patient as clean, dry, and comfortable as possible. Use disposable pads on the patient's bed and remove them when soiled. If urine output is excessive, a catheter may be used. In the case of continuing diarrhea, a rectal tube may be used.
Darkened urine or decreased amount of urine	A catheter may be necessary to avoid blockage.
Body temperature lowers; skin cool to the touch, particularly extremities. Skin color darkens to a grayish hue. Fingernail beds appear cyanotic.	Use regular blankets to warm the patient, who may not be aware of feeling cold. (Do not use electric blankets or heating pads, which can cause burns.)
Rattling or gurgling breath sounds; irregular or shallow breathing; fewer breaths per minute; breathing that alternates between rapid and slow (called Chenye-Stokes respiration).	Turning the patient's body to the side and placing pillows beneath the head and behind the back may ease breathing. Supplementary oxygen may benefit some patients. If patient can swallow, offer ice chips. A cool mist humidifier may make breathing more comfortable.
Turning the head toward a light source	Leave soft, indirect lights on in the room.
Increased difficulty controlling pain	Provide pain medications as prescribed. Advise physician if dose seems inadequate. Gentle massage and relaxation techniques may help with pain.
Myoclonus (involuntary movements), changes in heart rate, loss of reflexes in arms and legs

Signs of Death

Signs that death has occurred include:

• Lack of respiration or pulse
• Eyes open but do not move or blink; pupils dilated
• Jaw relaxed; mouth slightly open
• Bowel and bladder contents expelled
• Patient does not respond to touch or speech
• Skin color becomes pale and waxen in appearance
• Body temperature drops
• Sound of internal fluids trickling or gurgling

When death has occurred, nurses or other clinicians need to express their sympathy to the family. It is enough to say, “I am sorry for your loss.”

CONCLUSION

Many West Virginians recognize that death is inevitable and that planning for end-of-life care is essential to ensuring that our preferences are respected when we can no longer care for ourselves. More people are drawing up advance directives, appointing a healthcare proxy/agent, and choosing hospice and palliative care over aggressive treatments. These changes would not have come about without the educational and outreach efforts of nurses, other health professionals, public health agencies, and private foundations.

The ranks of people over 65 continue to swell, and many of them have one or more chronic diseases. Thus, the need for high-quality end-of-life care will only increase. Nine out of 10 Americans will need weeks or months of care at the end of their lives. All healthcare professionals have a role in helping their patients and families understand the range of options available and the benefits of planning for end-of-life care before it is needed.