Family perspectives about end-of-life (EOL) care have become a priority in healthcare as our population continues to age. The Administration on Aging predicted that the present percentage of older Americans (those aged >=65 years) will grow from 12.8% of the population to 19.3% by 2030.1 According to Day,2 more elders are dying in long-term care, and in a given year, for every 100 elderly patients in a nursing home, 35 will die in the facility, and another 37 will be admitted to a hospital where they may die, recover, or return.
We began this study in 2008 by interviewing family members who had in the past 3 to 18 months lost a loved one in a long-term-care facility. Three teams of student researchers conducted 19 interviews in four different long-term-care facilities over a 2-year period. The researchers asked families how they perceived their family members' deaths, whether advance directives (ADs) were present and utilized, and what recommendations these families would have for other families as well as healthcare providers at end of life. Data collected from these interviews highlighted the experiences and emotions of these families recalling their loved ones' deaths in a long-term-care facility. Thus, this study was initiated to determine the family experience.
To begin, we conducted an updated literature review utilizing the following databases: MEDLINE, CINAHL, and OVID. The keyword search included: family perspectives, end-of-life care, nursing home/hospice/home care, quality care, geriatrics, and advance directives. Inclusion criteria consisted of articles pertaining mainly to qualitative studies from peer-reviewed journals whose authors focused on quality of EOL care, communication with healthcare personnel, and ADs.
The authors of the literature on family perspectives on EOL care focused on the need for increased education of healthcare staff on the dying process, open and early communication to family members on the prognosis for their loved ones, and the need for up-to-date ADs. Although there were other elements that affected families' sense of peace, these three elements emerged as crucial to families' decision-making capacity during the dying process. Curtis et al3 described the quality of dying and death as the "the degree to which a person's preferences for dying and the moment of death are consistent with observations of how the person actually died as reported by others."3(p18) End-of-life care is specific to individuals and their families.
Quality of EOL Care
Thompson et al4 believe that family members were better prepared to make decisions regarding EOL care when they are told that death was a possible outcome. Communicating and providing recommendations do not guarantee that patients and families will follow the clinician's advice. However, without such communications, the likelihood of poor EOL decision making increases.
Using qualitative focus groups, Thompson et al4 measured patient satisfaction and dissatisfaction through a modified version of the TIME instrument (Toolkit of Instruments to Measure End-of-Life Care). Participants revealed that pain and symptom management was key element in family satisfaction of EOL care.
Curtis et al3 explored family perspectives through interviews using the Quality of Dying and Death (QODD) questionnaire with such questions as "During the last month, did you feel the nurse could have done more to help control X's symptom?" and "How well did the healthcare team explain X's condition to you?" They concluded that higher QODD scores were associated with death at home or in a patient-desired location.
Through a series of 54 qualitative telephone interviews, Shield et al5 revealed that families felt the need to advocate for their dying loved one because they had previous experiences with EOL care and were fearful of poor quality. Lack of trust often led to hypervigilance on the part of families. Both Shield et al5 and Thompson et al4 reported that families believed their physical presence at the facility was necessary to ensure the best care. Continuity of nursing care was also noted to increase family confidence in care.4
Families, as informed advocates, will continue to demand a more central role in EOL care decisions. Long-term-care facilities will need to determine what quality EOL care encompasses for each individual patient, as the elder population continues to grow.6,7
Communication Between Family and Healthcare Staff
Nurses are integral in facilitating EOL discussions from their role as patient advocates as well as their assessment skills on families' perceptions and coping skills. Although it is not within the nursing scope of practice to discuss prognoses, nurse-initiated discussions regarding the disease process, expectations of care, and integration of information assist in reducing conflicts and improving decision making.8
Poor communication among providers and family members regarding the overall plan for the patient led to uninformed decisions. Some families noted especially on weekends and holidays that insufficient nursing reports resulted in ineffective pain and symptom management.4 Families also cited dissatisfaction when they were not involved in the planning of EOL care. This led to increased anger, guilt, and frustration during this period as well as during the bereavement.4
Marco et al9 reported that respondents were more satisfied with communication from nursing staff than from physicians. Families noted the importance of communication not only during the patient's final days, but also following the patient's death. Some physicians perceive that their duty has been fulfilled following death, but surviving loved ones often look for comfort and empathy during the bereavement period.
In recent studies, investigators discovered that when healthcare professionals provided clients with a safe and nonjudgmental atmosphere to express themselves openly, they discovered how deeply life and death are entwined.10 Three elements assisted healthcare professionals in addressing EOL discussions: (1) interpersonal skills, (2) ethical and professional principles, and (3) organizational skills.10 In order to listen and dialogue with clients about their grief, loss, and possible declining health status, healthcare professionals must have a base of knowledge and personal emotional health.10
Advance directives encompass living wills, healthcare proxies, and durable power of attorney. As discussed by Norris and colleagues,11 these legal documents have increased families' satisfaction and involvement in deciding the best plan for EOL care for their loved ones.
However, ADs are not without limitations. In one study, the authors identified five barriers to ADs: (1) poor readability (the mean reading level of an older person is a fifth-grade level, whereby ADs are written above a 12th-grade level); (2) healthcare agent restrictions (many states restrict who may serve as healthcare agents in the attempt to prevent coercion that may prevent patients from having their wishes honored); (3) execution requirements such as notary public signatures and witnesses that may cause patients' documented wishes to be invalidated; (4) inadequate reciprocity (acceptance of ADs between states); and (5) religious, cultural, and social inadequacies.12 These authors recommended that any future advance care planning interventions should focus on eliciting individualized patient preferences and promoting discussions, rather than solely encouraging AD completion.
While ADs are helpful for determining the patient's wishes, the majority of older persons die without ever expressing their preferences for EOL care. Klinkenberg et al13 presented a study of after-death interviews with healthcare proxies. Of the 270 who participated, only 27% had actually been designated by the deceased to be their healthcare proxy. Klinkenberg and colleagues13 also believe that the absence of a serious medical condition hampers many elders from formally addressing EOL care issues. Sharman and colleagues14 cited the need for constant updating for ADs as preferences and health status can change over time and reported that up to 80% of elders falsely remember that their current preferences were the same as their original ones. One recommendation includes creating expiration dates on ADs to fulfill current wishes. Advance directives must the wishes of people when they cannot speak for themselves.14
In 2010, the American Academy of Nursing15 released its position statement and policy on advance care planning for EOL discussions as essential aspects of care for patients with life-limiting conditions to guarantee respect for patients' values and preferences.
Summary of the Literature
The literature, whose authors have addressed family perspectives on EOL care, centers on the need for increased education of healthcare staff on the dying process, open and early communication to family members on the prognosis of their loved one, and the need for up-to-date ADs. As more and more research is being conducted on what constitutes a good death, guidelines are being developed in the hopes of ensuring the best possible EOL care for all. However, additional work still needs to be focused on strategies to motivate and promote elders to discuss their EOL preferences, so their wishes will be adhered to at the end of life. Unfortunately, more research is also needed to document the reasons elders' wishes are not followed even in the presence of ADs. Further research is needed to more fully understand what comprises a peaceful EOL experience. While EOL care from a healthcare provider perspective has been previously explored, the family perspective provides new insights not often considered by providers or researchers. By communicating directly with families, the researchers gathered information directly from the people who knew the patients the best, their families.
Our research team conducted a series of 19 interviews exploring the family members' perspectives after the death of their elderly loved ones in one of four long-term-care facilities from 2008 to 2010 (see Table 1 for participant demographics). The face-to-face interviews allowed family members of deceased frail elders to share what the family members' EOL experiences were like for them and their families. Utilizing the same research questions, the research team members used qualitative content analysis to examine the data. A metasynthesis was later conducted to explore the 19 interviews as one data set. Categories were identified, and important factors in EOL care emerged.
|TABLE 1 Demographics of the Family Members for Whom an Interview Was Completed at One of Four Long-term-Care Facilities in Massachusetts|
This research commenced in 2008 with a pilot study consisting of two family member interviews. Utilizing a qualitative descriptive exploratory design, we conducted interviews with family members whose names were obtained through a local neighborhood health center with an elder service plan who had lost a loved one within the previous 3 to 18 months. In 2009, the team conducted five more interviews with family members who had lost a loved one through another geriatric long-term-care setting within that year. Finally, team members conducted 12 more interviews with family members whose loved ones were cared for in two separate long-term-care facilities in the greater Boston area. The following research questions were posed to the family members after permission was granted by each facility's legal and patient service departments, and approval was granted by the institutional review board at Simmons College in Boston, MA. The interviewers elicited informed consent from each participant, with agency staff and research faculty available for support to family members during the interview process.
1. What was your family member's EOL experience like for you and your family?
a. Can you please tell us what you think your family member's EOL experience was like for him/her?
b. Can you please tell us what your family member's EOL experience was like for you and your family?
2. Were the providers aware of your loved one's wishes (eg, compliance with an AD)?
a. Did your family have a signed AD in place prior to your family member's death?
b. If you had an AD in place, was it helpful in planning your family member's EOL experience?
3. What recommendations/advice do you have for healthcare providers regarding providing care at the end of life?
a. What advice would you give a family facing similar circumstances (preparing for a family member's EOL experience?
The research team members then utilized a qualitative metasynthesis design in combining the findings of 19 family members' interviews, which had taken place at a time 3 to 18 months after losing a loved one in a long-term-care facility. The aim of the synthesis was to identify emerging categories from the previously conducted interviews. The metasynthesis included "interpretative translations produced from the integration or comparison of finding from qualitative studies."16(p758) Data from these interviews were extracted and encoded for synthesis. The data were further organized into emerging categories, which were interpreted as meaningful elements to family perspectives on EOL care.
Our purpose in utilizing a qualitative metasynthesis design was to develop new interpretive techniques and insights to synthesize the qualitative research findings. The major strength of this metasynthesis design was the homogeneity of the integrated studies. Similar study designs were utilized, and the same research questions were posed in all 19 interviews. Weaknesses included the limited number of interviews, the varying quality of interviews, and the lack of heterogeneity in the various long-term-care settings where the deceased family members had resided.
There were a total of 19 participants in the final analysis for the study. Seventeen of the 19 participants were adult children of the deceased. In addition, one participant was a spouse, and the other participant was a grandson. All of the deceased family members who were spoken of were all over 81 years old, with a mean age of 89.9 years old (Table 1).
Our findings reflect the metasynthesis we performed using the 19 interviews. We explored each research question in the individual interviews and then all 19 as a collective whole. We recognized recurrent categories and further coded these into categories acknowledging both positive and negative feelings reported by family members. The findings are summarized in Table 2.
|TABLE 2 Summary of Three Research Questions on Family Perspectives on End-of-Life (EOL) Care|
Research Question 1: What Was Your Family Member's EOL Experience Like for You and Your Family?
Family members' experiences did vary, but common themes emerged from the majority of interviews. Categories included the perceived quality of death, quality of staff, and continuity of care provided, staff/provider communication, and transitions in points of care. Subcategories emerged within these categories to illuminate what characteristics led families to perceive a quality EOL experience. Families described their loved ones' deaths and how their comfort at the EOL affected what they perceived as the quality of death. Open communication between families and staff, as well as the quality of care provided in the long-term-care facilities, was also noted by families as important in EOL care.
Quality of Death
Family members detailed what they felt about their loved ones' dying and the quality of their deaths. The family members expressed positive feelings when they believed their loved ones died comfortably at the facility. The majority of the families wanted to be and were present for the death. The family members were also comforted when pain medication was used at the end of life. Some were relieved to have hospice involved, and others had positive experiences with religious support at end of life. Families found it difficult to witness when breathing problems were present at the end of life, when they perceived the decision to withhold fluids as unethical, when patients were under medicated, and when staff members were unable to inform the family of imminent death.
Quality of Staff/Continuity of Care
Families discussed the quality of staff and continuity of care and often associated these attributes of care directly with positive or negative feelings about the patient's death. Family members were more likely to have positive feelings about staff when they believed the staff really cared about their family member. "They cared; that was the most important thing to me," stated one family member. A daughter recognized the respect shown by staff members toward her mother: "A lot of respect, dignity, yes. Absolutely." Families found comfort when staff was present, and some noted great support from nursing aides. Negative feelings about staff members were associated with inconsistencies in care and in situations when they perceived the care to be poor. Families found continuity of care very important and reported poor outcomes with inexperienced and "weekend" staff: "My only complaint with this place, and I'm sure it happens everywhere, is on the weekends; they bring in people who are not their regular staff. They don't give a damn." Another family member associated negative feelings with an inexperienced nurse. "Yes I think [if] I would have had one of these older nurses who have been through it enough, it would have been different. Yes. It would have." Poor quality of care was associated with negative feelings. One family member stated that she felt staff were not sensitive to her father's needs: "[T]hey'd have the TV blaring, and they're talking really loud in a foreign language, which is very confusing for someone who has dementia anyway." The need to advocate for quality care was also discussed by some, and the necessity of family presence to ensure proper care occurred: "[M]y sister, she would come late at night and find him sitting in a mess." Families responded well when their loved ones had been well taken care of. When staff genuinely cared about their jobs and took the time and effort to properly care for the patients in the long-term-care setting, families recognized the effort.
Transitions in Care
Transition from one facility to another was also a notable factor that elicited responses from families. One family discussed the smooth transition from the patient's day program to full-time nursing home care: "There was no anxiety on her part about going." Two families discussed the transition in care from primary care provider to nurse practitioners at the facility. "She was never afraid to call my mother's primary physician when there was any kind of a question." The family appreciated this. However, there seemed to be more negative than positive feelings associated with transitions. Families felt guilty when admitting loved ones into facilities, and for one family, it led to multiple readmissions and unsafe home conditions. The major area of concern for families was the transition from long-term care to acute care in an emergency or when follow-up was needed. One patient was transported to the emergency department when she began to choke on a glycerin swab. The patient was transported to the emergency department, and multiple unnecessary tests were performed when she arrived. Her wishes were not communicated to staff because her ADs were not sent with her on transport. Families often found transition to an acute-care facility to either not be in the best interest of their family member or, even when it was necessary, clear communication between facilities to be lacking.
Communication was a common factor discussed in nearly all interviews, whether it was positive or negative. Families felt more prepared for their family member's death when there was open communication with providers. Families were more satisfied with staff communication when they knew realistically what was happening with their family member, good or bad. One grandson remarked that staff did an "excellent job explaining the pros and cons and what was happening to my grandmother." Families reported positive feelings when healthcare providers had recognized the signs and informed them about their loved one's imminent death. A family member reporting a lack of communication on that very topic described her disappointment when she did not receive a call until after her mother had passed away: "I didn't get a call to come be with her. That hurt me." Families reported satisfaction when staff kept family updated consistently about every part of care. When it came to discussions about the actual death of a patient, several families reported the lack of realistic conversations. One daughter stated, "There was a lot of what I can only call irrational optimism about my mother's condition." While some family members did state that they felt completely informed about all decisions around EOL care, others felt misinformed about the supportive care decisions they made, specifically the decision to withhold fluids: "I was strongly encouraged not to let them give her fluids[horizontal ellipsis]. They kept saying it would prolong her life, but I feel it contributed, the lack of fluids, I think it contributed to her discomfort during her final hours." Decision making on behalf of their loved ones and communication about these decisions were strongly linked, and families felt the most supported in those decisions when well informed.
Research Question 2: Were the Providers Aware of Your Loved One's Wishes (eg, Compliance With an AD)?
Families were asked about the presence and effectiveness of ADs. While the majority of the families reported that family members had ADs either prior to or at the time of admission, the actual decision making left in the hands of healthcare proxies varied among individuals. Some families reported that EOL conversations had taken place years before they needed to make decisions and that the patients' wishes were well known. Others reported no conversations had occurred, and rather, it was the families' decision when to withdraw care. Some families found this a burden, and all those who were able to utilize requests made in ADs felt that they were doing what their loved ones wanted.
Presence of ADs
Families reported varied experiences discussing the EOL wishes with loved ones. While some family members described full discussions they had had with their loved one regarding EOL care, others stated that these conversations never happened, be it intentional or not. While there were a few patients who did not want to be involved in the conversations, others never really had the chance as their minds were taken by their disease. Prior family experience with the dying process was also noted to increase the capacity to discuss the dying process and make decisions for a dying loved one. The majority of patients discussed in the interviews had ADs in place prior to or at the time of admission to the long-term-care setting.
Decision Making in the Presence of ADs
The majority of the family members we interviewed reported that ADs were helpful: "[W]e agreed what we wanted to do, and there wasn't any question in terms of how we were going to approach the situation." Another family reported, "It made some decisions a lot easier because you can always say that was their wishes; people get mixed up in this; they become selfish, and they want to hold on to their loved one[horizontal ellipsis]." However, even with the presence of ADs, there were still gray areas about healthcare proxies making the decision to sign a DNR, DNH (do not hospitalize), and decisions about feeding tubes, fluids, and other interventions. One daughter said, "It's hard to be the healthcare proxy and everything and make the decisions and say even with the comfort measures only, you say, 'Am I doing the right thing?'" One family mentioned the benefit of discussing ADs at quarterly meetings with team members. Team members found it to be helpful in updating the family on the patient's condition and making any changes to the course of action.
Research Question 3: What Recommendations/Advice Do You Have for Healthcare Providers Regarding Providing Care at the End of Life?
A few family members noted that because of prior experiences with loved ones, they felt more prepared and educated about the dying process and how best to advocate for their loved ones at the end of life. These past experiences and advice from others assisted these family members with the knowledge that is available to help with decision making. Having the chance to reflect back on their experiences, family members cited that being able to provide advice to others in their situations, as well as to the staff providing care to their loved ones at the end of life, was meaningful to them. Areas of advice included the importance of the presence of ADs, early communication by providers to families about expectations surrounding the end of life, and specific preparation for the death experience.
Advice to Families
Family members' experiences led to many recommendations for both families and healthcare workers as they prepare for the dying process or help others plan for this difficult time. From the choice of a facility to advocating for loved ones in their last hours, the families involved hoped all would benefit from their participation in the studies. Families believed that early discussions were important in advocating for their loved one's wishes at the end of life. Families encouraged others to find a good facility and have good healthcare staff to guide them through the process. Having ADs written down and in place prior to decline was noted by most as essential. Promoting open discussions with loved ones about decisions regarding supportive care such as feeding tubes and intravenous fluids was also a key point that families discussed in ensuring a "good death."
Advice to Providers
Family advice to healthcare staff and facilities focused mainly on improving the quality of care delivered to patients and their families. Many families stressed the importance of finding a facility that they could trust. By ensuring that consistent and well-informed staff members are involved in the care of the patient, families believed that the care could be more continuous. Families recommended keeping lines of communication open on all subjects surrounding EOL care. Being able to advocate for their patients, as well as respecting family wishes, is a balance that families recognize and hope staff can manage.
The opportunity to share recommendations with both other families and providers gave those families we interviewed a chance to share their thoughts on what they would have done differently and more importantly highlighted what they believed to be the most important to the care of a loved one at the end of life. Many families stressed the importance of finding a facility that they could trust, as well as being comfortable advocating for a loved one whenever they felt it was necessary. Having the conversations about the end of life with providers was also encouraged because it helped families anticipate what would be happening. The discussion around ADs and EOL preferences with family members prior to and during decline was strongly suggested by the majority of the families. Families recommended that healthcare staff continue to improve the care provided to patients and their families. Providing continuity in staffing and open communication with families would also help to improve family satisfaction with EOL care of their loved ones according to the participants in the study.
Our findings underscore the importance of listening and hearing the firsthand experiences of families as their loved ones are dying. Although it will never be an easy discussion to engage in with family members, these 19 family interviews echo the importance of having conversations about death well before the family members need to make decisions. Having the opportunity to talk about their experiences after the death of their loved ones not only gave family members a chance to reflect on the dying process, but also provided useful insights about their perceptions and perspectives. Families were able to identify both negative and positive feelings about the care given to their loved ones and to them as well.
Families vividly reported the strengths and weaknesses they found in the care that their loved ones received at the end of life. During the active dying process, families noted the quality of care their loved ones received as one of the most important factors. As found by Thompson and colleagues,4 it is essential that nursing care be consistent and that the patient and family feel supported during the process. As reported by Curtis and colleagues,3 family members in this study reiterated the importance of communication during the dying process. Families stated that communication was effective when it was realistic and present throughout the entire dying process.
Findings from this study that have not been previously addressed included family members and patients' difficulty in relinquishing long-term relationships with their previous primary care providers. In addition, family members reported communication issues when a loved one is transported unexpectedly and unnecessarily to an acute-care facility while in the long-term-care facility. Given the previous literature and our findings that suggest continuity and ongoing communication as essential in the dying process, the change in provider and setting highlights the ongoing challenges in ensuring quality communication.
The majority of the patients involved in the study had previous or documented ADs upon admission to the long-term-care settings. While some patients made their wishes well known to their families, others wanted their healthcare proxies to make the decisions for them. Families did report that the more detailed the loved one's wishes were, the easier it was to make decisions at the end of life. The removal of the decision-making burden from families was noted as one of the most important benefits of having ADs: being able to do what the patient wanted and not having to make decisions on their own. This is consistent with the findings of Curtis and Engelberg,17 who reported that family satisfaction and involvement increased with the presence of ADs. However, researchers need to address ways to assist elders in remembering their preferences over time. Findings in this study suggest that, even in the presence of ADs, the process of family decision making about EOL care is challenging and requires continual support and guidance.
Future researchers need to explore EOL care in the long-term-care setting. The conduct of longitudinal studies to investigate how family perspectives change over time may be important in improving the experience of dying for both patients and families. Exploring strategies to motivate and promote elders to discuss their EOL preferences with their families could also lead to improved experiences.
As nurses, exploring what patients and family members experience at the end of life will help us better meet their needs for comfort and care. Incorporating more education about the EOL process into nursing program curricula will allow nurses to explore and develop what constitutes quality EOL care for all those involved. Guidelines and evidence-based practices for EOL care can help build a foundation for improved practice for patients, their families, and staff members in long-term-care settings. Implementing the strategies suggested from this research will assist in further refining the specific care that seems to enhance a dignified, comfortable death. All care for those in long-term-care settings should be based on ADs. However, as the findings from this study illustrate, implementing these directives requires a comprehensive approach. Based on family perspectives, continuity of care and ongoing communication along the continuum of chronic illness through to the death experience are essential.