Death in western cultures

A person might think that contemporary American society would have developed a logical, efficient plan to help people as they near the end of life. Instead, many older people and their families are faced with fragmented, disorganized, and often, inadequate guidance. They are forced to attempt to make sense of the ever-changing rules and regulations set up by private or governmental bureaucracies. This increases stress and frustration for the dying person and his or her family members, and effective end-of-life care is too often delayed to be of maximal benefit. Although we have not yet solved all of these problems, many organizations, agencies, educators, and health care providers are working toward that goal. Many groups, including the Institute of Medicine, the American Association of Colleges of Nursing, the Robert Wood Johnson Foundation, and the Open Society Institute’s Project on Death in America, have publications and websites to detail the work that is taking place.

Attitudes toward death and end-of-life planning

The combination of extended life expectancy and technology has changed the average person’s experiences and perceptions regarding death. The process of dying has been separated from most people’s personal experience. Many people reach middle or even late adulthood having little or no direct experience with death. They may know someone who has died and they may have attended a memorial or a funeral service, but few have actually been present with a loved one at the time of death. Attention to end-of-life care has increased in recent years. This interest is being driven, in large part, by the members of the baby boom generation who are dealing with end-of-life concerns related to their parents. Soon these Baby Boomers will make up a large part of the senior citizen population who will need to prepare themselves for the end of life.

In the past, it was easier to make end-of-life decisions. In fact, often there was no need to make a decision. Physicians could unequivocally state, “We have done everything possible.” Today, there is always a chance that some new drug, some new procedure, or some new technologic breakthrough might save ourselves or our loved ones from death. The variety of treatment options available to people of all ages makes end-of-life decision making more difficult. Personal values, cultural and spiritual beliefs, and life experiences all affect the choices made.

Some older adults and their families continue to look to technology to prolong their lives and desire to receive every possible treatment available. Other older people would prefer a comfortable death in the presence of loved ones to a traumatic death with heroic lifesaving measures being used. Many older people say that they do not fear death as much as they fear how they will die.

Many people are uncomfortable talking about death. Family members, nurses, and other caregivers must overcome this discomfort so that they can provide good care for older people nearing the end of their lives. Discussions regarding the end of life usually are not as traumatic for the older adult population as they are for younger people. By the time people reach their seventies and beyond, most have experienced the death of loved ones. Parents, spouses, siblings, friends, and even children or grandchildren have died from myriad causes and under widely differing circumstances. Experience with these deaths generally helps aging adults determine what they do or do not want done as the reality of death approaches. Most alert older adults are quite candid in expressing their wishes if approached in a sensitive but a matter-of-fact way.

Ideally, discussions regarding end-of-life care and death planning will occur before a health crisis arises. Too often, important decisions regarding end-of-life care are avoided or delayed, as though denying thoughts about death will keep it from becoming a reality. This is unfortunate because it often shifts the burden to family members who are trying to come to grips with the approaching death of a loved one.

Several situations may help open the door to discussion about a person’s preferences regarding end-of-life decisions. Family members may find it appropriate to discuss a parent’s preferences after watching a television show or discussing a news article that deals with dying. Other opportunities for discussion of an older person’s wishes may occur during gatherings where the family reminisces about other family members who have died or after the death of a friend or family member. Nurses who work in clinics or ambulatory care settings may use comments such as “Even though I’m OK now, I know I won’t last forever” as a way to open the door to a discussion of end-of-life planning. Admission to an acute care setting for treatment of a serious or life-threatening illness can present a good opportunity to the nurse to initiate a discussion regarding end-of-life wishes. Once the initial danger has passed and the patient’s status has stabilized, there is usually a high level of consciousness regarding death. People who have resisted making plans can no longer avoid the necessity. The nurse may provide the materials needed to initiate advance directives or may refer the patient and family to a social worker or appropriate community resources.

Values clarification related to death and end-of-life care

Beliefs, attitudes, and values regarding the experience of death and end-of-life care vary widely. People’s responses are influenced by their age, gender, culture, religious background, and life experiences. Just as patients and their families must explore their values when making end-of-life decisions, so must those who provide care. Physicians, nurses, social workers, and others would benefit from spending some time identifying their personal values related to the end of life. This process will help them identify those values that are likely to influence their decision-making processes and behavior when caring for dying patients.

Ethical dilemmas relating to end-of-life care are more likely to occur when the value systems of the patient and of the caregiver differ significantly. Understanding the value systems of others can help the nurse provide quality end-of-life care, even when the nurse does not share the same values.

What is a “Good” death?

Palliative care

According to the World Health Organization, palliative care focuses on reducing or relieving the symptoms of a disease without attempting to provide a cure; it neither hastens nor postpones death. Palliative care affirms life while accepting death as its normal conclusion. Interventions are designed to optimize the patient’s ability to live as active and complete a life as possible until death comes. Competent adults, regardless of age, who are suffering from life-threatening diseases such as cancer or advanced chronic conditions such as emphysema or end-stage renal disease can, and often do, make the decision that they no longer desire aggressive treatment such as chemotherapy, assisted ventilation, or dialysis. This does not mean that these patients forego all medical intervention; for example, a wound would still be treated and a fracture would still be placed in a cast. Individuals who choose palliative care typically choose to decline other procedures such as cardiopulmonary resuscitation (CPR), artificial ventilation, and artificial feeding, which may prolong the dying process. Medical treatment and nursing care focus on actions that enable the dying person to have the highest quality of life for whatever time remains in his or her life.

Collaborative assessment and interventions for end-of-life care

Good end-of-life care requires the commitment and collaboration of all caregivers. No matter who is designated as the primary caregiver, all parties, including the family, physicians, nurses, social workers, clergy, psychologists, dietitians, pharmacists, therapists, and volunteers must work together effectively for the good of the dying person. Everyone needs to work together cooperatively and creatively and with a positive attitude to solve any problems that might arise. Problem solving requires mutual respect and prompt, effective communication among all team members. Team members also need to recognize the physical and emotional toll that occurs when working to meet the needs of the dying person and his or her family. Providing emotional support to other caregivers can help them maintain the high level of energy needed to meet the various physical and psychosocial needs of the dying.

Communication at the end of life

Effective communication is a challenge at the best of times. Communication can be even more challenging during stressful times, such as when the end of life is near. Everything takes on increased importance in this once-in-a-lifetime experience. There is no chance to do things over, so it is essential that they be done right.

One of the most important thing caregivers can do is spend more time with the dying person and encourage family members to do the same. This is not easy because demands on nurses’ time are high, but when the nurse recognizes the importance of communication at the end of life, priorities can change. Most people surveyed do not want to die alone, but too many do. Studies have shown that dying people in institutional settings spend a great deal of time alone. One study done in a hospital reports that physician visits average 3 minutes, nursing personnel visits average 45 minutes, and family visits average only 13 minutes per day. These statistics mean that the dying person is alone for 23 of 24 hours. Another study revealed somewhat better, but still worrisome, results. In this study, dying patients spent 18 hours and 39 minutes alone in their rooms. Nurses and nursing assistants spent by far the greatest amount of time, 94 minutes of the day, with the dying person, but most of this time was broken into 45 short visits that were highly task-oriented. It is interesting to note that physicians spent more time than expected with patients who had “do not resuscitate” (DNR) orders and those receiving palliative care for cancer. Patients with dementia received the least time from physicians. Attention from family members varied widely based on age, availability, culture, and real or perceived proximity to death.

The basic challenge of all communication is to develop and maintain rapport. To accomplish this, the nurse needs to know as much as possible about the person receiving care. This includes the patient’s religion, cultural background, values and beliefs, advance directive for health care, and past experiences that may affect decision making.

To do this, nurses need to demonstrate verbally and nonverbally that they are approachable and not detached or indifferent. A good way to start is by consistently addressing or referring to the patient by name. This shows respect and helps the dying person maintain a sense of self-worth and dignity. An empathetic word and gentle touch can demonstrate caring. Holding a hand, stroking a forehead, gentle repositioning, providing good basic hygiene, and maintaining an aesthetically pleasing environment free from odors, clutter, and the like all help communicate that the dying person is respected and valued.

Nurses need to demonstrate willingness to listen to suggestions, requests, or criticism made by the dying person or, more likely, by his or her family. Near the end of life, emotions run high, and people often think that they are at the mercy of the “system.” Out of frustration or distress, they may perceive that their loved one is not getting all of the care he or she deserves. Nurses must be open and willing to listen to these criticisms without becoming defensive, whether the criticism is justified or not. Prompt response to requests or an explanation regarding why certain things cannot be done communicates that caregivers recognize the importance of the dying person’s needs.

Questions should be answered honestly and directly. If the nurse does not have the information or is not at liberty to disclose it, actions should be taken so that the necessary information is obtained from the appropriate source in a timely manner. Discussions regarding end-of-life experiences and care should be clear and truthful. Dying persons and their significant others need to be supplied with all necessary information. The patient and his or her family should be informed, to the degree that it is humanly possible, about what to expect. All medical terms such as feeding tubes, ventilators, CPR, DNAR orders, and so forth should be explained in plain language using simple sentences. Even simple information or explanations can be confusing at stressful times and may need to be repeated often. The nurse should try to prevent or correct any misunderstandings or mistaken perceptions that may occur. This can be done by summarizing and restating what the nurse thinks the patient or family member said. Time for response and further clarification should be allowed if necessary.

Within culturally acceptable parameters, the patient should be actively involved in discussion regarding the plan of care. Nothing is more demeaning or frustrating to a dying person than having a nurse discuss plans with the physician or family while the one person most intimately involved is ignored. Nurses can help the patient work through fears and end-of-life decisions by spending time listening in a nonjudgmental manner. Sensitive communication cannot be hurried, and the time the patient wishes to talk cannot be scheduled like a procedure. Once upon a time, nurses provided direct care and had the opportunity to really talk with terminal patients. Too often these days, patients spend more time communicating their fears and concerns about death and dying with the nursing assistant who helps with their hygiene than with a nurse. Nurses often spend more time dealing with paperwork, passing pills, and assisting or performing procedures than they do caring for the actual person. Measures need to be developed to rectify this problem.

Reflective and open-ended statements such as “There seem to be things that are worrying you,” “If you want to talk, I’ll listen,” or “It must be hard. Do you want me to sit with you for a while?” are often effective ways to encourage a conversation. Nurses should start communication from where the patient is and then go where the patient wishes to go. Patients should be free to discuss the things that concern them the most, not just the topics with which the nurse feels most comfortable. The nurse should be careful not to interrupt or dominate the conversation. Whenever possible, the dying person should have adequate privacy so that he or she can communicate freely and undisturbed by unnecessary noise and commotion. Reassurance that the nurse will keep information confidential may encourage the dying person to communicate his or her fears or concerns more freely. This may also encourage dialogue, which can help dying persons begin a life review through which they can validate their life experiences and enhance their level of peace.

When death is near, one or more members of the family or significant others may wish to remain with the dying person. Most facilities encourage this and provide some accommodations for their comfort. The nurse often needs to explain what to expect as death approaches; how to best communicate with the patient; and what, if anything, loved ones can do to help to make the end of life as peaceful as possible.

After the person dies, the nurse should not be afraid to express emotion at the loss. Often, particularly in extended-care settings, the nurse and other caregivers have developed a true affection for the person and will need to grieve his or her loss. Family members usually report that seeing the nursing staff’s grief actually helped them cope with the loss, because they knew that other people cared enough about their loved ones to say a prayer or shed a tear.

Psychosocial perspectives, assessments, and interventions