FAMILY NURSING

June 25, 2024
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FAMILY NURSING

End-of-life Care in Family Nursing

 

END-OF-LIFE CARE

Sometimes nurses in medical-surgical settings encounter families who are coping with patients at the end of life. Knowledge about the process of dying can help nurses work effectively with families during this very difficult time. Family members have reported the experiences of a family member’s death as including a downward spiral of prognoses, difficult decisions, feelings of inadequacy, eventual loss despite the members’ best efforts, and perhaps no good-byes (Kirchhoff et al., 2002). The more the nurse knows about the family, the better, because the way a family deals with death is affected by cultural background, stage in the life cycle, values and beliefs, the nature of the illness, whether the loss is sudden or expected, the role played by the dying person in the family, and the emotional functioning of the family before the illness (Rosen, 1990; Leonard, Enzle, McTavish, Cumming, & Cumming, 1995). This knowledge of families will help nurses provide more-sensitive care as they move through the phases of end-of-life adaptation.

Phases of Adaptation

Families move through three phases of adaptation in response to the news that a family member has a fatal illness (Rosen, 1990). Various emotional responses may emerge during these phases, including disorganization, anxiety, emotional lability, or turning inward. The first phase is the preparatory phase. This phase begins when symptoms first appear and it continues through the initial diagnosis. During the preparatory phase, families experience fear and denial and may refuse to accept the prospect of death. Some family members decide to withhold all information from those whom they consider vulnerable, such as children or elderly parents (Rosen, 1990). During the period of initial symptoms, diagnosis, and treatment plan, the family may be highly disorganized and display emotional instability.

Once the family accepts the prospect of loss and begins to live with the reality of the fatal illness and the caretaking tasks of the illness, it moves into the middle phase. Families live the day-to-day challenge of dealing with physical symptoms, treatment, and care (Rosen, 1990). The family becomes less disorganized; indeed, it reorganizes to assume new roles. On the other hand, the tedium of daily care may tax the physical and financial resources of the family. If hospitalizations are lengthy or frequent, the logistics of visitation may create discord among family members (Rosen, 1990) – some members of the family may feel that others are visiting too little or too much—and unresolved family issues from the past may emerge.

The final stage, acceptance, arrives when the family accepts the imminent death and concludes the process of saying farewell. Family emotions that surfaced during the first phase but subsided during the middle phase may resurface. Family members may draw together in anticipation of their loved one’s death (Rosen, 1990). Nurses can help families with a dying relative by informing them that it is natural to pass through phases of adaptation and that they can expect to address complex issues in each phase of a fatal illness. Helping families accept their feelings and directing them to appropriate resources, such as a hospice, family support groups, social workers, and family conferences, may be useful.

Meeting Family Needs before Death

Meeting family needs is also important. Needs of families of dying patients include the following:

1. To be with the dying person and to provide help to the dying person

2. To be informed of the dying person’s changing condition and to understand what is being done to the patient and why

3. To be assured of the patient’s comfort and to be comforted

4. To ventilate emotions and to be assured that their decisions were right

5. To find meaning in the dying of their loved one

6. To be fed, hydrated, and rested (Truog et al., 2001)

Although not always possible, a private room is most conducive to family emotional and physical intimacy. Usual restrictions on visitation should be relaxed as much as possible. Providing the family with an electronic pager or cellular phone may allow family members to take a break for a while without feeling out of contact (Truog et al., 2001). Attention to family well-being by providing tissues, blankets, coffee, and water is also important (Truog et al., 2001). It is important to provide explanation about how the patient will die and what it may look like. In a descriptive study, intensive care unit nurses were asked how they prepared families for the death of their patient following withdrawal of mechanical ventilation (Kirchhoff, Conradt, & Anumandia, 2003).

Forty-three descriptors were identified, of which 67.5 percent were physical sensations and symptoms. In describing dying, nurses reported telling family members about breathing patterns, sound during breathing, effort associated with breathing, skin color and temperature (e.g., pale, moist, clammy), sleepiness or decreased responsiveness, spastic movements, loss of bowel control/incontinence, and altered papillary responses to light. The possibility of transferring the patient to another room was mentioned, and removal of unnecessary equipment was also identified.

Meeting Family Needs Following Death

Following the death, it is important to allow enough time for questions, allow the family the opportunity to view the body, and describe the events at the time of death, while conveying sensitivity and caring (Swanson, 1993; Leash, 1996). Buchanan, Geubtner, and Snyder (1996) demonstrated the importance of specialized follow-up care for surviving family members and loved ones during the year after death. Sudden, traumatic death leaves the survivors in shocked disbelief and intense emotional pain. Appropriate support and intervention can make a significant contribution to the family’s eventual recovery by assisting in the normal grieving process and thus avoiding prolonged pathologic grieving (Buchanan, Geubtner, & Snyder, 1996).

Specific End-of-Life Issues

Caring for families when a member is dying is not easy. It is challenging for nurses to help families cope (Leonard, Enzle, McTavish, Cumming, & Cumming, 1995). Rarely do nurses feel comfortable and confident discussing death with patients or families. Several issues are especially difficult for nurses: discussion of use of life-saving or life-extending measures, discussion of withdrawal of life support, conveying news of sudden death, family presence during cardiopulmonary resuscitative efforts, and offering families the option of organ donation.

LIFE-SAVING OR LIFE-EXTENDING MEASURES

Frequently, illness occurs unexpectedly, and sometimes unprepared families must deal with illnesses or injuries where there is no hope for recovery. Families may have to abruptly make decisions regarding the use of life-saving or life-extending measures during the acute illness period. Patients and families may find themselves in a crisis situation with little time to discuss the options regarding life-saving measures or for making decisions about “do-not-resuscitate” (DNR) orders.

It would be ideal if health care professionals routinely discussed resuscitation preferences with patients while patients are competent to make such decisions. In reality, however, such discussions often do not take place, so health care professionals and families must make end-of-life decisions without the guidance of the patient. Families must decide between the uncertain outcomes of resuscitation and the certainty of death without resuscitation. Researchers have found that 86 percent of decisions regarding resuscitation measures involved the family, whereas only 22 percent of the patients were included in the decision making (Bedell, Pelle, Maher, & Cleary, 1986).

 

Several issues should be kept in mind with regard to DNR orders. First, physicians may discuss many variations of DNR orders with families. Sometimes it is appropriate, for example, to withhold chest compressions and intubation but still administer antiarrhythmic and vasopressor drugs. At other times, no life-saving measures may be administered. Nurses can help families by clarifying the various options presented to them and offering opportunities for discussion. Needless to say, decisions about DNR status are difficult to make. The appropriate timing of discussion of DNR orders is also difficult for physicians to determine. Because nurses develop special insights as a result of the time they spend at the bedside getting to know the patient and family, they can help physicians schedule these important discussions.

Research findings suggest that four factors assisted families to make decisions about DNR status (Bedell, Pelle, Maher, & Cleary, 1986). First, an explanation of brain death criteria by the physician eased the family’s ability to make a decision, as did the second factor, physician and nurse support for the family. Third, families wanted assurance that comfort measures would continue. Fourth, families found that any previous discussion they had had with the patient about life decisions was helpful in the decision-making process. Withholding cardiopulmonary resuscitation is not the only difficult decision families are faced with. It is not uncommon during the course of stay in an ICU that hope for patient recovery fades and further treatment is considered futile. At this time, the focus of decision making changes from the pursuit of cure or recovery to the pursuit of comfort and freedom from pain until death. Decisions are needed about withdrawing treatments such as vasopressors and inotropic medication, intra-aortic balloon counterpulsation, mechanical ventilation, hemodialysis, total parenteral nutrition, and others. One study that examined deaths in an ICU over the course of a year found that 90 percent of the deaths involved withholding or withdrawing at least one life-support measure (Prendergast & Luce, 1997).

Studies have shown that less than 5 percent of ICU patients are able to communicate with health care providers at the time decisions are made about withholding or withdrawing life-sustaining therapies (Curtis et al., 2001). Health care providers must discuss these issues with family members at a time when they are under stress and struggling with making what may seem like an abrupt transition from having hope for recovery to dealing with impending death. Communication skills of nurses and physicians are critical during this time because withholding or withdrawing medical interventions involves detailed and complex conversations with patients’ families (Curtis et al., 2001). Suboptimal communication can erode family trust and fuel disputes about futility of care (Fins & Solomon, 2001).

Family conferences have been suggested as one way to carry out these complex conversations with patients’ families. Family conferences are attended by several members of the family and several members of the health care team (e.g., nurses, doctors, social workers, chaplain). Before these conferences, it is important for nurses to facilitate and coordinate conference planning by contacting family members and preparing them for discussion (Curtis et al., 2001).

Following the conference, nurses assume responsibility for reinforcing the information given during the conference (Curtis et al., 2001). Other postconference activities include talking with family about how the conference went, asking family members whether they have questions, talking with the family members about changes in the patient’s plan of care as a result of the conference or about their feelings, supporting decisions the family made at the conference, assuring the family that the patient will be kept comfortable, and locating a private room for family members to talk among themselves.

FAMILY PRESENCE DURING CARDIOPULMONARY

RESUSCITATION (CPR)

During the acute illness period, the patient may suffer a sudden arrest of heartbeat and respiration, requiring cardiopulmonary resuscitation (CPR). When a patient has an arrest, the CPR team is called to the bedside. Physicians, nurses, and other health team members crowd around the patient to administer chest compressions, manually ventilate the patient, perform defibrillation, give drugs, or carry out other liferestoring activities. Until the patient’s heart rhythm and respiration are restored, this is a tension-filled situation.

There is a growing acceptance that allowing families to witness resuscitation efforts is good practice (Meyers et al., 2000; Boudreaux, Francis, & Loyacano, 2002; Ardley, 2003). In 1994, the Emergency Nurses Association (ENA) passed a resolution supporting family members at the bedside during invasive procedures and resuscitation (Boudreaux, Francis, & Loyacano, 2002). This resolution resulted in a 2001 position statement designed to assist the implementation of family presence into the practice (Emergency Nurses Association, 2001). There are advantages to having families present to watch nurses and physicians carry out resuscitative efforts. The advantages for families include the following:

• Recognizing that the patient is dying

• Feeling helpful and supportive to the patient and the staff

• Knowing that everything possible is being done

• Being able to touch the patient while he or she is still warm

• Saying whatever they need to say while there is still a chance that the patient can hear

• Recognizing the futility of further resuscitation efforts

• Facilitating the grieving process

• Accepting the reality of death (Emergency Nurses Association, 2001)

Family presence may eliminate the terrible fear of being left alone in a waiting room without knowing what is happening (Eichhorn, Meyers, Mitchell, & Guzzetta, 1996). Meyers and colleagues (2000) reported that of the 39 family members who were present for an invasive procedure or resuscitation, 95 percent said that the visitation helped them to comprehend the seriousness of the condition and to know that every possible intervention had been performed. Ninety-five percent also believed that their visit helped the patient. On the other hand, some health care providers believe that there may be disadvantages to having families observe CPR (Boudreaux, Francis, & Loyacano, 2002; Ardley, 2003). Some clinicians believe that (1) the experience is traumatic and frightening to watch, (2) families may interfere with protocols and procedures, (3) there is not enough space at the patient’s bedside for the CPR team as well as the family, (4) staff may become too stressed with family present, (5) there is an increased risk of liability, and (6) staff is not available to provide family information and support during the resuscitation (Emergency Nurses Association, 2001). However, data do not exist to support these fears. Investigators reported that there were no adverse psychological effects among family members and that the activities of health care providers were not disrupted when families were present (Belanger & Reed, 1997; Meyers et al., 2000).

Guidelines for nurses deciding when families are to be permitted in the patient’s room during CPR include the following:

• Discussing the option with the family and giving them a description of what will be going on in the room

• Checking the code status with the doctor and the nurse in charge

• Assessing the room from the point of view of the family

• Accompanying the family member into the room to ensure that the family member gets an accurate explanation and has an appropriate perception of what is being done

• Not permitting family members to enter the code area while intravenous lines are being placed or while the patient is being intubated

• Letting family members in once the code is under way

• If a family member cannot handle the visit, escorting him or her from the room

Hopefully nurses will be sensitive to family needs during this stress-filled time and will consider the benefits and risks of witnessing CPR. Some families will not be able to cope with the experience, whereas others will not want to be involved. It is important to assess the family to determine whether their presence might be appropriate (Martin, 1991; Eichhorn, Meyers, Mitchell, & Guzzetta, 1996).

CULTURAL CONSIDERATIONS

Respecting the family’s cultural background and use of rituals, customs, or styles to deal with death is important. For instance, in Western countries, enteral feeding is considered part of treatment. As many as 89 percent of American, 65 percent of British, and 56 percent of Belgian physicians have reported that withdrawal of feeding is acceptable; in a Japanese study, however, only 17 percent reported that they would withdraw artificial feeding (Vincent, 2001). Another example is that some Pacific Islanders may ask that a window remain open when a family member is dying, to allow the soul to leave (Mazanec & Tyler, 2003). A Muslim family might request that immediately after death, the patient’s body be turned east to face Mecca, their holiest city (Mazanec & Tyler, 2003). Nurses cannot assume that families will respond to issues surrounding death as they would. Cultural competence demands that nurses look at dying both through their own eyes and through the eyes of patients and their family members (Mazanec & Tyler, 2003).

CONVEYING NEWS OF DEATH

Family grief reactions manifest themselves as guilt, self-reproach, anxiety, loneliness, fatigue, shock, numbness, sleep and appetite disturbances, crying,

Overactivity, or confusion (Swanson, 1993). Informing the family of the death of a loved one is a challenging task. A health care professional’s initial contact with the family about a death or about dying has a significant impact on the family’s grief reaction. “Bad news, conveyed in an inappropriate, incomplete, or uncaring manner, may have long-lasting psychological effects on the family” (Swanson, 1993). In a survey of 54 family members of 48 patients who died in either an ICU or an emergency department, a caring attitude of the health care provider delivering the bad news was considered the most significant feature of giving bad news successfully (Jurkovich, Pierce, Pananen, & Rivara, 2000). Clarity of the message, privacy, and a news-giver who was knowledgeable and able to answer questions were also ranked as important. Touching was unwanted by 30 percent of the respondents but was encouraged or acceptable in 24 percent. Rank and attire of the news-giver were considered of little importance.

Communicating news about the death to a family should be done in person whenever possible (Truog et al., 2001). Ideally the news should be delivered in a private room that has seating available for everyone. It is important for health care providers to be attentive to their appearance, especially if they appear disheveled following resuscitative or other invasive procedures (Truog et al., 2001). Demonstrating compassion and empathy, avoiding cliché such as “He is at peace now,” and avoiding unfamiliar jargon such as “code” or “vent” are important communication skills to remember.

Using the telephone to convey news of death must be considered carefully. A Gallup poll of a sample of adults living in the United States reported that when death of a family member was unexpected, 64 percent preferred to be told instead that the patient was critically ill and to come to the hospital immediately. Only

26 percent preferred to be given the news of death over the telephone (Truog et al., 2001). In a companion survey of physician practices, findings were very similar. However, when death of the patient was expected, delivering the news of the death by telephone was more acceptable (Truog et al., 2001).

OFFERING THE OPTION OF ORGAN DONATION

Discussing organ donation with a family whose loved one has suddenly died is difficult. “Often the deceased is a young, previously healthy person who died suddenly in a tragic accident” (Hoffman & Malecki, 1990). The discussion about organ donation should take place separately from notification of the patient’s death, and it should be done by someone specially trained in asking for organ and tissue donation (Truog et al., 2001). Federal regulations now stipulate that institutions are required to contact their local organ procurement organization (OPO) concerning any death or impending death (Truog et al., 2001). Once contacted, the OPO sends a representative to the hospital to ensure that the family will be approached at the appropriate time by a professional skilled in providing information about the option of organ donation and in accurately answering questions (Truog et al., 2001).

If organ donation is viewed as a consoling act, rather than as an imposition on a grieving family, offering the option of organ donation becomes easier. Organ donation benefits the family of the donor as well as the organ recipient. Hoffman and Malecki (1990) have noted that donation of organs can help families cope with their loss. Perceiving that organ donation can help someone else live, that functioning organs are not wasted, that something positive can come out of death, or that a family member can live on in someone else through donation can help families cope with their loss.

Common courtesy and sensitivity to the family’s grief are important (Siminoff, 1997). The following have been found to facilitate offering of the option of organ donation:

• Using a private area

• Clearly communicating about the loved one’s death

• Allowing family time to absorb the news regarding their loved one’s death before asking about donation

• Assuring the family that the decision is theirs to make

• Informing the family of the possible benefits of donation

• Providing information that will assuage the family’s fears regarding donation (Siminoff, 1997)

• Providing time for families to be with their loved ones and to decide about their options (Exley, White, & Martin, 2002).

Many families worry that donation is disfiguring or delays the funeral — neither is true (Siminoff, 1997). Finally, families may be confused about the costs of donation and need to be informed that the organ procurement agencies pay for all costs pertaining to the maintenance or removal of the donor organs once the family has agreed to donation (Siminoff, 1997).

NURSING IMPLICATIONS

The body of knowledge about medical-surgical nursing is growing, and there are many opportunities for nurses to apply this knowledge to practice, further research, education, and health policy.

Practice

In practice, medical-surgical nurses must intervene with families during all phases of an illness. “Nursing interventions for families are nursing treatments that assist families and their members to promote, attain, or maintain optimal health and functioning or to experience a peaceful death” (Craft & Willadsen, 1992). Craft and Willadsen have identified nine categories of family nursing interventions: family support, family process maintenance, promotion of family integrity, family involvement, family mobilization, caregiver support, family therapy, sibling support, and parent education. Only the first six apply to nurses in medical-surgical settings and are described in more detail in the following sections. Given the growing number of elderly Americans and the associated growth of hospitalizations due to chronic illnesses (Centers for Disease Control and Prevention, 2003; Hajjar & Kotchen, 2003), these interventions require age-specific considerations to meet the needs of aged family members.

Support

Families in medical-surgical settings are experiencing life changes and stressors and are frequently ieed of support. Nurses can support the family in several ways:

• Use effective, open, and honest communication, by listening to family concerns, feelings, and questions and answering all questions or assisting the family to get answers

• Help the family acquire information

• Respect and support family coping mechanisms

• Foster realistic hope

• Assist families to make decisions through providing information about options

• Provide opportunities to visit

• Arrange family conferences to allow ventilation of family feelings

• Permit the family to make some decisions about patient care

• Clarify information

Flexible visiting hours, information booklets or flyers, and a caring attitude are practical and specific ways to support families (Henneman & Cardin, 2002). Family support groups may provide the opportunity for participants to share common experiences, build mutual support, express common concerns, foster a sense of hope, reduce anxiety, and obtain information common to the group’s needs (Leske & Heidrich, 1996). Some older family members, however, may feel that sharing feelings, personal issues, and private family matters is unacceptable; thus, a support group may not be a beneficial intervention for an aged family member (Leske & Heidrich, 1996). Support groups may be more acceptable if the content focuses on information and tasks rather than on sharing feelings and concerns (Leske & Heidrich, 1996).

Process Maintenance

The illness and hospitalization of a family member upsets family routines and activities. Identifying how the acute illness episode has altered family roles and consequently disrupted typical family processes is a necessary part of maintaining family process. Offering flexible opportunities for visiting will help to meet the needs of family members and patients and can also promote maintenance of typical family processes.  Family members may want to discuss with the nurse other strategies for normalizing family life.

Promotion of Integrity

Stressful hospitalizations may adversely affect the emotional bonding that family members have with one another. Nurses can promote family cohesion and unity by allowing for family visitation and facilitating open communication among family members. Scheduling a family conference to encourage all family members to voice their concerns about care management to one another and to the health care team is a way to facilitate open communication. Telling family members that it is safe and acceptable to use typical expressions of affection may also be appreciated. For example, a wife may appreciate knowing that she will not disrupt the technological equipment at her husband’s bedside or disrupt equipment attached to his body if she kisses his cheek or holds his hand. Providing opportunities for private family visits can make the visits more satisfying.

Involvement

Providing physical care to their loved one during hospitalization may comfort family members, especially if the family members routinely provided physical care for the patient at home. Before encouraging family members to become involved in patient care, however, it is important to identify the family’s preferences, the patient’s preferences, and family members’ capabilities. Family members can be involved with care in a number of ways, such as helping during mealtimes, assisting with brushing teeth, and assisting with patient positioning or range of motion.

Mobilization

Family caregivers may be experts in caring for the patient because of their many years of experience with a chronic illness. Nurses should acknowledge this family expertise and use the family’s strengths through family mobilization techniques. For example, two ways to mobilize families include discussing how family strengths and resources can be used to enhance the health of the patient and establishing realistic goals with the patient and family. Collaborating with family members in planning and implementing patient therapies and lifestyle changes is another. Families may want to share information about the patient’s favorite position when lying in bed, preferences in music, bedtime habits, or preferred comfort measures. Determining family cultural practices and incorporating them into plans for care is yet another way to mobilize the strengths of the family.

Caregiver Support

Frequently illnesses or injuries require patients to have an extensive period of recovery or time for adaptation to end-of-life at home. This period may be taxing on family members who are providing care as well as trying to fulfill other responsibilities of their daily life. Attentiveness to caregiver support is an important part of medical-surgical nursing. Caregiver support may include provision of the necessary information for providing care, supporting the caregiver through the grieving process, providing for follow-up health caregiver assistance through telephone calls and/or community nurse care, teaching caregiver strategies to access and maximize health care and community resources, or encouraging caregiver participation in support groups.

Education

It is no longer appropriate to study medical-surgical nursing only from the perspective of individual patient care. Faculty need to clearly define family health care practice in medical-surgical settings (Hanson & Heims, 1992) and incorporate family care into medical-surgical nursing courses and appropriate practice settings. Family assessment frameworks that lead to specific strategies for intervention also need attention in medical-surgical nursing curriculums (Hanson & Heims, 1992). Relegating the bulk of family content to specialty courses, such as community health nursing or childbearing family nursing, misleads students about the practice of family nursing. Nursing staff on medical-surgical units also need to be educated about family nursing, especially because many staff members were educated at a period when family nursing was not considered important in medical-surgical settings.

Research

Identifying family practice problems (e.g., difficulties associated with delivering care to families) and investigating the validity, relevance, cost, and benefits of potential solutions to those problems will help promote research-based practice (McCaughan, Thompson, Cullum, Sheldon, & Thompson, 2002). Designing, implementing, and testing family nursing interventions will foster the growth of medical-surgical family nursing knowledge. However, research findings about families become valuable to families only after they pass through the research utilization process. The goal which results in optimal family outcomes. Through research utilization, knowledge about families that is obtained from research is transferred into clinical practice. Nurses who seek to improve family care through research utilization engage in critically analyzing research literature about families, select from the literature interventions that are appropriate for their practice setting, implement the interventions, and then evaluate the family outcomes.

Health/Social Policy

Health care policies clearly influence nursing practice. Family nursing practice in medical-surgical settings can be enhanced through hospital and unit-based philosophy statements that include the family. Programs related to meeting the needs of family members should include every member of the health care team, including unit secretaries, security guards, volunteers, housekeepers, and aides (Henneman & Cardin, 2002). Policies about family visitation, family participation in care, family presence during CPR, families staying overnight in patient rooms, and families bringing in favorite foods should be evaluated in light of a family care philosophy. In addition to advocating for families within hospitals, medical-surgical nurses should strive to assume leadership responsibilities as legislative advocates. Medical-surgical nurses are capable of providing leadership in solving the problems of our health care system that affect families requiring hospitalization and home care. Changes in public policy are needed to address issues such as the growing disparities in health care, difficulty accessing health care, lack of insurance to cover the costs of expensive medications, safe workplace environments, and others. There are several ways that medical-surgical nurses can be involved, such as by keeping informed about legislative activities, or communicating with legislators by writing letters, making telephone calls, or sending e-mails.

References

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http://www.health.gov/healthypeople/

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http://www.nursingworld.org  The official website of the American Nurses’ Association.

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http://www.florence-nightingale.co.uk

 

 

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