Learning Objectives
Glossary
Advance directive – A document prepared by an individual to provide guidance to the healthcare team in the event that the person is no longer capable of making decisions.
Euthanasia– The act by a physician or another person of administering a treatment with the specific intent to end a person's life.
Hospice – A philosophy of care and a program for the terminally ill that focuses on providing dignity, comfort, control, and choices at the end of life. At home or in a facility, hospice care is provided by an interdisciplinary team of specially trained professionals who coordinate services for the patient and family to enhance the quality of life for the time remaining.
Palliative care – Management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus is on care to enhance quality of life. Goals for interventions are generally focused on symptom management.
Physician-assisted suicide– Means provided by a physician to be used by the patient to end his or her life. Also may be called Aid in Dying.
Facing the end of life, whether from a prolonged terminal illness, advanced age, or injuries remains the greatest and final challenge. For some people, facing this challenge may be a gradual process as a disease advances; for others, it may come suddenly and unexpectedly. With advanced disease, some individuals may be preparing themselves all the way through the course of the illness, whereas others maintain strong optimism or denial.
The National Hospice and Palliative Care Organization reports that in 2005 75% of deaths in the United States occurred in institutions (50% in acute hospitals) and 25% at home. Home deaths are most associated with hospice care. It is predicted that nursing homes will be increasingly common as the site of death in the United States. Although most people report that they wish to die at home, the acute hospital remains the most common location at the end of life because some people still pursue aggressive treatment, their wishes about resuscitation are unknown, or the family is uncertain about what to do when a crisis occurs. Unfortunately, the hospital may not always be the best prepared for providing a peaceful, comfortable setting for patient and family because of the focus on aggressive interventions (Teno et al, 2004). More hospitals are now developing palliative care programs to address these issues. CAPC (Center for Advancement of Palliative Care) reports that 75% of hospitals with bed capacity over 250 have a palliative care program in 2006.
Policies need to be in place to address comfort care and provide adequate medications. Families and staff members need to be clear on the appropriate use of analgesics and sedatives at the end of life and that the use of these is different from physician-assisted suicide and euthanasia. Wherever the patient is, however, the nurse remains the key person to advocate for the patient's care and provide care and support at the end of life.
The National Hospice and Palliative Care Organization has developed three outcomes that embody quality end-of-life care and can be adapted to any setting:
These outcomes provide an effective model for healthcare professionals to use when providing care to dying patients.
As a person faces the end of life, coping takes many forms. There are no consistent expected behaviors, although generally the person copes in the same way as he or she has at other times of crisis. For example, if a person has tended to be angry and isolated, it is common to see the same reactions during the dying process. The following are some of the common fears faced by the dying patient and family that influence how they will cope.
This is often listed as the greatest fear of the dying. Images of loved ones who died in severe pain are particularly associated with cancer. These memories may cloud the perceptions of what the end of life will be like. Fear of pain and suffering has received more attention in the last few years because pain and hospice professionals are attempting to educate the public and health-care professionals that the vast majority of pain can be treated by relatively simple means (Agency for Healthcare Policy and Research, 1994; Paice & Fine, 2006). Nearly all pain and suffering from end-stage disease can be effectively controlled with the knowledge and technology available today. The experience of pain and suffering can create isolation and depression for the patient and guilt for the family, so addressing this fear is essential to enhance physical and emotional comfort.
Increasing weakness and loss of control can increase anxiety and a sense of vulnerability in being left alone. This fear can be experienced in relation to the patient's physician, who may be less involved once aggressive treatment has stopped. This can even be reinforced if a physician communicates, “There is nothing more to do.” It is important for the physician to remain involved throughout the course of the terminal illness. Family members and physicians who feel helpless and anxious may inadvertently avoid the patient to escape distress or because they do not know what to say. It is important to realize how this affects the dying patient.
Loss of Control
Because our society values self-reliance and independence, loss of control is particularly frustrating. Weakness, fatigue, confusion, incontinence and distressing symptoms can all contribute to this fear. Individuals who value their independence may try to retain it as much as possible, even to their detriment. For example, a patient who lives alone may refuse to hire a live-in caregiver, even though he or she is no longer able to care for basic needs. Families often struggle to try to help their loved one maintain valued independence, yet provide for their safety. Loss of control can induce feelings of guilt as the patient needs to rely on others. Making the decision to stop aggressive treatment in the face of advanced disease can represent a major loss of control because the patient may feel that he or she is “giving in” to the disease.
Hope is a natural part of human existence, and as death approaches, it may be more and more difficult to retain. This can contribute to depression and loss of control. Hoping for a peaceful death and hoping to achieve a specific goal before death are examples of reframing hope at the end of life.
Death presents the greatest unknown to many people. Questions such as “What will happen to my family, my life plans, my body?” are difficult to face. They are also very difficult for others such as family members and even caregivers. Yet the patient may need to express them. Even though we may not have answers to these questions, providing an environment in which fears can be expressed is a great support. Spiritual support may also provide more comfort at these times.
The dying person also faces grief in facing the loss of his or her self, body, and loved ones. Family members may experience many of these same fears.
Related Clinical Concerns
The three leading causes of death today in the U.S. (National Center for Health Statistics, 2003) are
All of these causes of death are most often associated with chronic, long-term illness characterized by exacerbations and progressive symptoms. Pain, suffering, and distressing symptoms are all associated with long-term illnesses. Uncontrolled pain is by far the greatest fear and a major contributor to patient wishes for hastening death.
Patients in the final weeks of life report fatigue and weakness as the most disturbing symptoms, contributing to emotional distress.
Addressing the needs of dying children takes a dedicated team experienced in working with children and their families. Because of their young age, children are often medically treated very aggressively until the end, making preparation for death more difficult. Professionals may be ambivalent about when to bring up these issues. Parents, especially younger ones, may have little experience with death and will need special assistance in preparing for it. Accidents remain the most common cause of death of children but congenital conditions and cancer remain as frequent causes (NCHS, 2006).
Parents and professionals often struggle with how to prepare the child. Adults who do not want to face this may expend most of their energies denying the possibility of the child's death. Children are very sensitive to their parents' reactions and may very well realize what is happening without being told directly. The sick child needs to be approached according to developmental level as to how much he or she can understand. Adults need to stress a sense of comfort, security, and family closeness. A pediatric hospice can provide parental support and education in this area. Pediatric hospice remains underused in many settings though because treating physicians and parents continue to maintain hope (Levetown et al, 2001). The growth in recent years of Pediatric Palliative Care Programs provides a family-centered approach for children with life-threatening conditions to address suffering, goals, coordination of care amongst other services (Himelstein, 2006) even if the family continues to pursue aggressive treatment.
Siblings often need special attention at these times, yet their needs may be overlooked because of the crisis with the sick child. Siblings often struggle with many anxieties about their own health, jealousy for the sick child who gets special attention, and even feeling responsible for the illness. As with the sick child, the use of play and drawings can be used to help them express feelings that they are too young to verbalize. Siblings should also be included in the care of the ill child, but still be given permission to live a normal life. Seeking help from pediatric professionals is essential.
The major developmental task of old age is to prepare for death. Life review, letting go of responsibilities and possessions, and adjusting to health changes are normal parts of the life cycle that elderly people must face. The death of close friends may occur much more frequently as one ages. Women in particular have a greater likelihood of losing their spouse and living alone. Death is not as feared in this age group. For many, a gradual giving up of plans, hopes, and dreams may provide preparation. Maintaining independence for as long as possible, along with respect, support, and good symptom management, are important contributions to good end-of-life care in this population.
As more older adults spend more time in nursing homes, this will become a more common place to provide end-of-life care (Teno et al., 2004). Hospice care can be provided in a nursing home.
Possible Nurses' Reactions
Thoughts, Beliefs, and Perceptions
Relationships and Interactions
Collaborative Interventions
Adequate pain and symptom management must be achieved before any psychosocial issues can be addressed. The vast majority of pain and other symptoms of end-stage disease can be controlled with analgesics, anxiolytics, antiemetics, and other drugs as needed. Fears about addiction by patients, families and as health-care providers need to be addressed to ensure that no one is allowing needless suffering to occur. Side effects of medications used must also be anticipated and measures used to treat them must be provided.
Because depression and hopelessness can affect the quality of life, antidepressants can be useful at the end of life, even in a patient with only weeks to live. The side effect profile needs to be carefully reviewed before selecting any medications. Antidepressants with shorter time to onset of effect should be considered in this population. Consultation with a pharmacist and/or psychiatrist might be helpful.
Patient and family may use a variety of complementary and alternative approaches to treat the symptoms of advanced disease or even to retain hope for a cure. Shark cartilage, Laetrile, and other unproven methods are sometimes continued at the end of life. The nurse needs to become familiar with possible side effects to help patients and families weigh the risks and benefits of using these products. For example, inserting a nasogastric tube just to administer shark cartilage may be too great a burden given the poor prognosis. Other approaches for relief of pain and other symptoms may include magnet therapy, acupuncture, biofeedback, and hypnosis.
Palliative care provides symptom management and support for patients with life limiting illnesses when the goal may be to try to prolong life but still focus on comfort. Patients may still be receiving aggressive treatments such as chemotherapy to control symptoms. Palliative care is most associated with end-of-life care (Gorman, 2006) but in fact can be appropriate early in the disease trajectory of a life limiting illness. Increasingly available in acute hospitals, Palliative care programs provide an important link to quality end-of-life care. National standards entitled the National Consensus Project (2004) for Quality Palliative Care are now in place to establish guidelines for programs.
Hospice care provides an interdisciplinary approach to care of the dying patient and his or her family when the goal is comfort. Medicare has provided a model for hospice services for patients with less than 6 months to live that has also been adopted by Medicaid in most states as well as by most private insurance companies. The hospice benefit will provide multiple services to patients and families under the direction of a hospice-trained physician and nurse to enhance comfort and support of the patient, family preparation, education, support and bereavement follow-up, along with the chaplain, social worker, and volunteers. See Table 19-2 Comparison of Palliative Care and Hospice for Comparison of Palliative Care and Hospice. Hospice cares for patients with any type of terminal illness. In recent years there has been an increase in patients with non-cancer diagnoses such as dementia and heart failure (NHPCO, 2007).
Some people seek out spiritual support when facing the end of life. They may wish to renew past religious ties, address personal suffering, and seek to find meaning to their life and perhaps their suffering. The role of religious leaders and particularly chaplains at the end of life can be an important intervention. Most hospitals, as well as hospices, offer these services.
ANTICIPATORY GRIEVING evidenced by distress at facing own death, including depression, anger, and guilt related to the terminal illness.
Patient Outcomes
Interventions
KNOWLEDGE DEFICIENT evidenced by frequent questioning, lack of knowledge of the dying process related to facing the death of a loved one.
Patient Outcomes
Interventions
When to Call for Help
Who to Call for Help
Patient & Family Education
Community-Based Care