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a Department of Physiological Nursing, University of California, San Francisco
Correspondence: Jeanie Kayser-Jones, RN, PhD, FAAN, Department of Physiological Nursing, University of California, San Francisco, 2 Kirkham Street, Room N631, San Francisco, CA 94143-0610. E-mail: jeanie.kayser-jones{at}nursing.ucsf.edu.
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Abstract |
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Key Words: Experience of dying • Nursing homes • Staffing • Health care provider-resident communication
In recent years, there has been an increased interest in the care given to terminally ill people; however, detailed studies of the experience of dying are fairly limited (Institute of Medicine 1997
). This article will review the literature on the experience of dying. The major areas of research reviewed are: (a) What are the psychosocial, cultural, spiritual, and organizational factors that affect the experience of dying? (b) How does the assessment and management of symptoms affect the experience of dying? (c) How does the relationship (i.e., interactions) between health care providers, patients, and families influence the experience and quality of care of people who are dying? (d) What are the psychosocial, cultural, and spiritual needs of patients, families, and health care providers? For each of these areas, a review of previous research will be presented, followed by data from an ongoing study, "An Ethnography of Dying in Nursing Homes" (1998–2003).
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Methods |
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Setting and Sample
Data were gathered in three facilities, two proprietary nursing homes (one with 174 beds and the other with 138 beds), and one government-owned facility. Only data from the proprietary nursing facilities will be presented in this article. Facilities were chosen to provide variation in resident, provider, and setting characteristics. The residents in the study ranged in age from 39 to 101 years; their mean age was 79 years. Fifty-four percent were female. The majority (44.5%) was White, 28% were Chinese, 8.5% were African American, 5% were Filipino, and 14% fell into an "other" category. Forty-eight percent of the residents were on Medicare, 22.5% belonged to a health maintenance organization (HMO), 20.5% were on Medicaid, and 9% were private-pay residents. The primary diagnoses for the residents were: neoplasms (47%), cardiovascular diseases (15%), pulmonary diseases (8%), renal-genitourinary conditions (7%), diseases of the musculoskeletal system (7%), dementia (4%), and "other" (12%).
Data Collection
Data were collected over a 30-month period from January 1999 through June 2001. Participant observation; in-depth interviews with nursing home residents (n = 35), their families (n = 52), nursing staff (66) [i.e., RNs, LVNs, and certified nursing assistants (CNAs)], and physicians (n = 36); and event analysis were used to obtain data.
Event analysis, a detailed description and analysis of a specific event, was the strategy used to obtain data on the care of terminally ill residents. An event is something that happens or takes place that is important to the investigation. In this study, the process of dying in nursing homes was the event examined.
During event analysis, the care of 117 terminally ill residents was observed. When residents were inducted into the study, we observed their care from the time they were identified as being terminally ill until they died. The care of each resident was observed several days a week, and sometimes (e.g., when death was imminent) observations were made two to three times a day. Observations of care were made from the early morning hours until late evening, 7 days a week. To obtain data on the experience of dying, observations focused on the dynamics of providing care during the process of dying. Data were obtained, for example, on how nursing and medical care were provided, who provided the care, and if factors—such as age, cognitive status, ethnicity, financial status, and staffing levels—influenced how care was provided. We also obtained data on how health care providers communicated/interacted with residents and their families.
The experience of dying is defined here as the totality of events that occur in the final months, weeks, and days of life. That is, what are the facts and circumstances that influence the care that residents receive when they are dying?
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What Are the Psychosocial, Cultural, Spiritual, and Organizational Factors That Affect the Experience of Dying? |
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).
Most of the studies focusing on the experience of dying have been conducted in acute care hospitals among people who were dying of cancer. Investigators found that patients and their families were dissatisfied with hospital care because: The nurses were too busy to provide care; families were dissatisfied with the information they received from the hospital staff; and patients suffered because of inadequate pain management (Addington-Hall, MacDonald, Anderson, and Freeling 1991; McCormick and Conley 1995). Families praised health care providers who: Showed concern and compassion; were sensitive and open; took time to listen; treated dying patients and their families as individual human beings; and integrated family members in the patients' care (Andershed and Ternestedt 1998, Andershed and Ternestedt 1999; Pierce 1999). Staff members who were perceived as uncaring, unfriendly, insensitive, or disrespectful had a negative influence on families' experiences (Rogers, Karlsen, and Addington-Hall 2000).
Dying patients and their families valued open and ongoing communication with health care providers, especially when it was timed to their needs and allowed them to ask questions and express their viewpoints (Andershed and Ternestedt 1998, Andershed and Ternestedt 1999; Krant & Johnson, 1977; Rogers et al. 2000). In other studies, items rated as important were: Preparing for death; achieving a sense of completion; being treated as a "whole person"; not being a burden; dying at home; having better communication; having greater access to physicians' time; and being at peace with God (Hanson, Danis, and Garrett 1997; Steinhauser et al. 2000; Wilson 2000).
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Study Findings |
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Cultural Needs
Thirty-five percent of the residents were Asian, most of whom were unable to speak English. Often, they were unable to ask for help when they needed assistance. Those who did not have family were socially isolated. Mrs. Lee's (all names used are pseudonyms) only son lived in Hong Kong. She spoke a Chinese dialect that only the hospice social worker could understand. When the hospice social worker visited, Mrs. Lee was happy and animated; on other days, she was lonely. She asked the hospice social worker if she could visit every day.
Many of the Asian residents were unaccustomed to eating Western food. Mrs. Lee did not like Western food; she told the hospice social worker that she was hungry much of the time. In 1 month, she lost 8 pounds. During the last week of life, Mrs. Lee's left arm and hand became edematous; the hospice nurse asked the nursing staff to assist Mrs. Lee with meals, but no one helped her. One evening we observed her at mealtime. She took a piece of bread, tore it into little pieces, and put it into a bowl of rice soup. The CNA aide brought her another piece of bread. Again, she tore it into little pieces. A coffee cup with a thin broth, left from a previous meal, was sitting on her bedside table. She poured the broth over the bread and ate all of it. This event occurred 5 days before she died.
An 87-year-old Chinese woman, who was dying of lung cancer, was served a pureed nacho casserole 4 days before she died. Her son said that she had not been eating for the past few days, but that it would have been nice if they had served her food that she could have eaten had she wanted to.
Cognitive Status
The cognitive status of residents influenced their experience of dying. Residents who were cognitively impaired or comatose were often neglected. Mrs. Moore had a stroke, leaving her comatose. She had no family in the immediate area. She remained in one position hour after hour. The staff remarked, "She's on comfort care, and she's really comfortable!" Mrs. Moore was perspiring heavily; there was an offensive odor in the room. Four days after being admitted to the nursing home, she was wearing the same hospital gown that she wore when admitted from the acute care hospital. She had not been bathed, and she had not received oral health care. Her teeth were coated and her mouth and lips were dry. Residents like Mrs. Moore were often neglected; they died alone.
Staffing Issue
Inadequate staffing was a constant theme throughout the data collection period. Many of the staff worked double shifts and/or 7 days a week. One RN reported that she had worked 90 hr in 1 week, and a CNA stated that he had worked for 50 days without a day off.
When interviewed, the nursing staff said that they did not have time to provide basic care, such as turning residents every 2 hr, assisting them at mealtime, and getting them out of bed. Furthermore, some residents (as noted previously) were not bathed for days, and many of the residents did not receive adequate oral hygiene. A conscientious social worker said: "I'm sure you've seen that people just don't get the care that they should have. It's just that we're spread so thin."
The families sympathized with the staff. A daughter who was caring for her father said: "They just don't have enough help in this place. They work hard, but there's just not enough help." The husband of a woman who was dying said: "I bathe and change her. You can't expect the nurses to do anything; they have too many patients. They're good if we really need them, if we need to ask for pain medication or something like that." A visitor remarked: "A nurse aide came in; she was very sweet, very nice, but she told me that she had 30 patients that night. She was working a double shift and earlier in the day, she had 15 patients. I just thought: ‘How can you do that?’ I mean all they can do is see if people are breathing, and hope they are dry in the morning."
An RN, who had recently emigrated from the Philippines, said: "Most of the dying patients come to the point where they don't trust people; they don't trust the nurses. And the nurses don't have much time; there are just an awful lot of patients for the nurses. I don't have enough time to talk with patients. I have 20 patients to take care of. I was really surprised to see what the nurse to patient ratio was here. I expected that it would be much better here than it is in the third world. In the Philippines, for 40 patients, you would have about five RNs and six to eight nurse aides."
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How Does the Assessment and Management of Symptoms Affect the Experience of Dying? |
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interviewed 3,357 patient surrogate decision-makers 4–10 weeks after the patient's death to obtain data on the last 3 days of their lives. Four in 10 patients had severe pain most of the time, and severe fatigue affected nearly 8 in 10 patients. Sixty-three percent of the patients had difficulty tolerating physical or emotional symptoms.
Other studies have also found that patients experienced moderate to severe pain in the last weeks of their lives (Goodlin, Jette, Lynn, and Wasson 1998; Miettinen, Tilvis, Karppi, and Arve 1998; Tolle, Tilden, Hickman, and Rosenfeld 2000). Most of the studies on symptom management have focused primarily on pain management in the hospital setting.
In our current study, we also found that pain was not assessed, monitored, and managed adequately. A 78-year-old man dying of lung cancer said: "Every day the pain just keeps getting worse. They don't want to give me anything for pain here. I don't understand. I'm going to die anyway."
A 62-year-old woman who was dying of breast cancer with metastases to the bone said that her pain was excruciating. "Every part of my body hurts," she said. "It's more painful than childbirth. It grabs on and won't let go." When in the hospital, the oncologist told her that she would not suffer, that the pain would be controlled. In the nursing home, however, when she asked for medication, sometimes the nurses came right away, but sometimes she had to wait. On one occasion, she had to wait for 5 hr. "Sometimes the pain is unbearable," she said. "It gets so bad that I try not to move. I get so tense!" Although the doctor had prescribed pain medication to be given every 2 hr PRN, she received the pain medication only three to four times a day; on some days, the medication was given only once. "Dying is hard," she said. Her 33-year-old daughter, who had a 1-year-old child, stated that she had to stay at the nursing home to oversee her mother's care. "I had to keep asking them for her pain medication. It became my job to keep on top of her pain medications," the daughter remarked.
Many symptoms and problems—such as depression, loneliness, fear, constipation, isolation, anxiety, edema, anorexia, insomnia, and fatigue—were not assessed and managed.
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How Does the Relationship (i.e., Interactions) Between Health Care Providers, Patients, and Their Families Influence the Experience and the Quality of Care of People Who Are Dying? |
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described how physicians and nurses avoided interacting with dying patients. They observed that doctors and nurses protected themselves from becoming involved with dying patients by avoiding the subject of death. Although there has been some research on nurse–patient and physician–patient communication, there has been little research on communication/interaction with terminally ill patients.
Nurse–Patient Interaction
Most of the research on communication between nurses and patients has been in the hospital setting. Studies have found that, typically, conversation is task-oriented, takes place while providing physical care, consists mainly of instructing patients, and describes nurses as controlling and directing conversation to safe topics and social chit-chat (Jarrett and Payne 1995).
In studies in which nurses have been interviewed, they report that the low quantity and quality of nurse–patient interaction is because they do not have time to talk with patients. Furthermore, they state that communicating with patients is difficult and stressful, and that it is especially difficult to communicate with cancer and terminally ill patients (Corner and Wilson-Barnett 1992; Wilkinson 1988). Only a few studies have focused on nurse-elderly patient communication (Davies 1992; Engram 1981; Gibb and O'Brien 1990), and research on communication with patients with dementia is scarce (Armstrong-Esther, Browne, and McAfee 1994). Costello 2001 found that the care of older patients who were dying was characterized by a lack of "emotional engagement" with the patient and nondisclosure of information about death and dying. Thus, nurses believe that talking and listening to patients who are dying are important, but difficult (McGrath, Yates, Clinton, and Hart 1999).
Observation of CNAs in nursing homes revealed that the amount of time spent in verbal interaction was small (11.8% of observation time), and that positive verbal interactions were rare (Burgio, Engel, Hawkins, McCormick, and Scheve 1990). Recently, researchers have focused on improving staff-resident social interactions. Communication-based, staff-training interventions have been used to reduce resident behaviors, such as physical aggression (Boehm, Whall, Cosgrove, Locke, and Schlenk 1995; Burgio and Burgio 1990; Burgio and Scilley 1994; Burgio and Stevens 1999; Burgio et al. 2001; Hoeffer, Rader, McKenzie, Lavelle, and Stewart 1997; Ripich, Wykle, and Niles 1995).
Physician–Patient Interaction
In 1995, a conference, supported by grants from the National Institute on Aging and the Agency for Health Care Policy Research, focusing on physician–elderly patient interaction, was held in Kansas City. The articles commissioned for the conference were published and provide an excellent overview of research on physician–patient interaction (Beisecker and Beisecker 1996).
In a recent study, efforts to improve communication between physicians and dying patients were unsuccessful (SUPPORT Principal Investigators 1995). In a study using focus groups that included patients with chronic and terminal illness, family members, and health care providers from hospice and acute care settings, six areas of importance in communicating with dying patients were identified: Talking with patients in an honest and straightforward way; talking willingly about dying; giving bad news in a sensitive way; listening to patients; encouraging questions from patients; and being sensitive when patients are ready to talk about death (Wenrich et al. 2001).
In our current study, we found that provider/patient–family interaction greatly influences the experience of dying in nursing homes.
Nurse-Patient/Family Communication
Many residents were cognitively impaired. Thus, much of the interaction occurred with family members, who attempted to intervene on their behalf. When problems in patient care occurred, however, families were often afraid to talk with the nursing staff. A 93-year-old woman was admitted to the nursing home with ovarian cancer. The daughter found bruises on her mother's arms. At first she did not want to ask the nurses about them because she feared retaliation. Later, she decided to report it to the nursing staff. "Now," she said: "They [i.e., nurses] don't talk to me; they never crack a smile; they never come in to say hello."
When family members went to the nursing station to talk to the nurses, they were sometimes ignored. The nurses remained sitting at the desk and would not make eye contact with them. The daughter of a resident said that when she went to the desk to talk with the staff about her mother's care, they seemed busy and preoccupied and would not look up from what they were doing.
Disrespectful/Insensitive Communication
Nursing assistants give most of the hands-on care. Residents and families, therefore, interact primarily with staff who have had limited education on how to communicate with terminally ill people. Furthermore, because of inadequate staffing, the nursing assistants had a heavy workload. Some of the CNAs were disrespectful when speaking with residents. A CNA, for example, told a patient that she was "smelly."
The daughter of a 91-year-old woman who was dying of inoperable cancer said the staff were a bit rough when they repositioned her mother. When she asked if they could be more careful, the CNA replied: "Just do it yourself." We asked a 90-year-old-man if the nurses could do anything to make him more comfortable. "They're always busy," he replied. "They tell me all the time, ‘Well, I’ve got other patients to do.' There's very little personal rapport here. There's nothing personal about the way they talk to you."
Because the CNAs are frequently at the bedside, they are often in the position of having to respond to the residents' comments about dying. When residents expressed their concerns, the CNAs often changed the subject or gave a response that inhibited communication. A woman said to a nurse aide: "I'm going to die. Nobody cares for me anymore." "What did you say?" we asked. "Well, I tell them, ‘Don’t say that. Everything will be fine.'" The RNs also had difficulty interacting with residents. When a resident said to the RN, "I am dying," the nurse replied: "Well, don't worry. Everybody will go to heaven." Then, she asked the woman to pray for her.
Despite a lack of education and a heavy workload, some CNAs were sensitive to the needs of residents and families. A man who had been a CNA for 20 years said that when residents say, "I'm going to die," he tries to reassure them. "But it's not an easy process," he said. "Dying is a messy process, and sometimes it's sad and depressing, but it's what I have to do. It's part of my job. It's scary for the patients, and it's sad when the family is grieving. I always try to see if I can offer them a little tea or coffee. I try to make it as pleasant as I can for them."
Another CNA said: "It's hard to find five minutes to talk with a patient. It's good to do it though, to talk with them nicely, sweetly, and to touch them. It helps them feel good."
Doctor-Patient/Family Communication
Although the nursing staff provide most of the care, when residents and their families know that death is imminent, they want to see their doctor. The presence of the doctor at the bedside is important to them, and they expect and hope that their physician will visit.
Eighty-four percent of the residents were admitted to the nursing home from an acute care hospital. They and their families were not well informed about how medical care would be provided in the nursing home. Some residents did not realize that their attending physician would not visit them in the nursing home, and they felt abandoned.
Furthermore, residents and their families thought the doctor would visit daily as he/she did in the hospital. Often, the medical director, who was a stranger, took over their care. Although federal regulations require that the physician visit only once every 30–60 days, residents and their families expected and wanted more interaction with their physician. An RN said: "Families are always asking me, ‘when can I see the doctor?’"
A CNA observed: "Sometimes the doctors come in and write in the chart, but they don't go and see the patient. The patient asks me, ‘Where is the doctor?’ It's important to them. The doctor is the professional at the bedside. I'm just a nurse aide, and they want to see someone with some importance. People are always asking me, ‘Who is my doctor?’"
One man, when asked about how he felt about his doctor's care, said: "He [the doctor] doesn't come. I was here [in the nursing home] for 5–6 days before he came. Then I asked him about going home, but he doesn't tell me what I need to know. I guess he doesn't know what to say. He just knows that I'm going to die so he tells me nothing."
When asked about the care he was receiving from his doctor, a man who was dying of a brain tumor shouted: "I haven't seen my doctor; that's the care I'm getting from my doctor! Write that down!"
On one occasion, a physician became angry because the family had called several times to discuss their mother's pain management. When the daughter called once again to speak with him, the physician came to the nursing home, rushed into the patient's room, and said to the family: "Let her die! I have people who are living to take care of!"
Inadequate Provision of Information
The information provided to families was often inadequate. The daughter of a patient remarked: "They never told us it was a malignant mass. If I had known sooner, it would have been different. It's important to tell caregivers and families too. How can we make decisions about her care? We need to be informed. If I had known sooner, I would have put my mother on hospice sooner. It's hard enough to make decisions about what to do when someone you love is dying, but it would have been easier if we had all the information as soon as possible."
Insensitive Communication
Some physicians were insensitive when communicating with patients and their families. A physician told a 46-year-old man with a brain tumor: "It's hopeless!" With sadness in his voice, the resident said: "There was no optimism at all. He gave it to me straight. He said there was nothing he could do."
Mr. Lee, whose 57-year-old wife was dying, said that the doctor was a nice man and a good doctor, but he had a lot to learn about communicating with the patient's family. "I think communication is very important. Maybe doctors should take a class during their training about how to talk with the family. The doctor said, ‘We are not going to give her an IV; we are not going to do this and that.’ He may be right about those things, but he should learn how to help the family without making them feel that he is refusing to do things. The doctor should try to make the patient and the family feel that he understands, that he cares about them, and wants to do the best for them. I understand that the doctor is a human being, not a god, so we don't expect too much."
Caring and Compassionate Communication
Some doctors were caring and compassionate. The doctor of a woman who was dying of breast cancer was exceptional in her communication with the patient and her 33-year-old daughter. She visited the resident weekly and called the daughter, regularly, to discuss her mother's care. When speaking of her mother's doctor, the daughter said: "She's really nice. She's always following up and constantly calling me. I don't have to try to find her." The daughter said that her mother's physician was a wonderful doctor, and she was also human. "You could talk with her about things other than medicine."
Another family member said that the doctor took time to talk with her about the placement of a feeding tube. "He was very kind, very good, and we talked it through. He gave me the options, and he listened very well."
In one case, the physician was in the nursing home when a woman was actively dying. He assured the family that he would prescribe medication to make her comfortable. Knowing that death was imminent, he stayed in the nursing home, monitoring her symptoms and advising the nurses on how to medicate her. After she died, the doctor stayed in the room, comforting the family (the husband and four sons). One of the sons remarked that the doctor was "the one bright spot" during the last days of his mother's life.
The relationship and interaction between health care providers, patients, and their families are important. They have a great impact on the quality of end-of-life care, and they profoundly influence the experience of dying.
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What Are the Psychosocial, Cultural, and Spiritual Needs of Patients, Families, and Health Care Providers? |
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interviewed 10 elderly Scottish patients, asking about their spiritual needs. Eight patients said they had experienced spiritual needs at some time in their lives, six while in the hospital. Patients stated that their spiritual needs could have been better met if, for example, a quiet room for reflection or prayer had been available, if they had been told about the hospital church services, and if they had been provided with transport to attend services.
A few studies have examined the role of culture (i.e., beliefs and rituals) among various cultural groups (Martinson 1998). In a study using two case vignettes (one an African American patient with pancreatic cancer and the other a Chinese immigrant with nasopharyngeal cancer), the investigators described a way of assessing cultural variation in end-of-life care. They argued that culture is only meaningful when interpreted in the context of a patient's unique history, family constellation, and socioeconomic status (Koenig and Gates-Williams 1995).
Another study examined attitudes toward life-sustaining technology among 200 older people from four ethnic groups: European Americans, African Americans, Korean Americans, and Mexican Americans. They found that attitudes toward wanting and accepting life support differed among the four groups. European Americans were the least likely to accept and want support; Mexican Americans and Korean Americans were more positive toward wanting and accepting life support. Although African Americans felt that it was generally acceptable to withhold or withdraw life support, they were the most likely to want to be kept alive on life support. They expressed a deep distrust toward the health care system and feared that health care was based on one's ability to pay (Blackhall et al. 1999).
Psychosocial, Cultural, and Spiritual Needs
The publication, Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine (Cassel and Foley 1999) states that one of the core principles for end-of-life care is to: "Assess and manage psychological, social and spiritual/religious problems." Although palliative care principles emphasize management of psychosocial, cultural, and spiritual problems, some health care providers may not realize the scope and magnitude of these problems/needs. Research is needed to identify the psychosocial, cultural, and spiritual problems from the perspective of residents and families among various social, cultural, and religious groups.
Some of the problems identified among terminally ill residents and their families were: Loneliness, fear of dying, financial concerns, depression, anxiety, the need for patient and family to talk about the impending death and their feelings of grief, the lack of meaningful activities, and the loss of dignity. The last two items will be discussed briefly.
Meaningful Activities
Nursing homes are required by federal regulation to provide meaningful activities for residents. Often, however, people who were dying were not provided with such activities. Many residents remained in bed day after day. The staff did not get them up in a chair, take them for a walk, or provide them with activities they might enjoy.
Mr. Smith, a 66-year-old man, was a computer programmer. He developed an unsteady gait and was diagnosed with lung cancer with metastases to the brain. When the tumor was biopsied, he suffered a hemorrhagic stroke, leaving him with right-sided paralysis and a swallowing disorder. When admitted to the nursing home, the doctor said that his prognosis was grave and told him that he had 2–6 months to live. Mr. Smith was placed on hospice care; he was determined, however, to get well. "More than anything, I want to go on," he remarked. When Mr. Smith was admitted to the nursing home, he had a large, stage IV pressure ulcer on his coccyx area that never healed. He was always in bed; he developed severe contractures of his lower extremities and another stage IV pressure ulcer on the lateral aspect of his right foot.
I arrived at the nursing home one day on a sunny afternoon. Mr. Smith was lying in bed. For 4 months, he had not been out of bed. His wife, who visited daily, said that since the weather was turning nice, she would like to take him to the sun deck for some fresh air and sunshine.
As a rule, methodologically, we do not intervene when we are conducting research. In this study, however, we made a decision that if we identified an important need, we would intervene. I asked the charge nurse if they could get Mr. Smith up in a wheelchair so that his wife could take him to the sun deck. He said that he was just getting off duty (it was 3 p.m.), but he assured me that he would get Mr. Smith up the following day. Two weeks went by and still Mr. Smith had not been out of bed. The staff offered various reasons. They did not have a wheelchair. They did not have time. If they got him up, he would want to go right back to bed.
Mr. Smith's wife assured me that her husband would like to go out onto the deck. I found the charge nurse and asked: "Have you been getting Mr. Smith out of bed?" His face flushed, and he replied: "Well, he's dying! We can't get him up in the wheelchair!" Mr. Smith lived for another 2 months. During the last 6.5 months of his life, he never left his room; he never had a chance to feel the sunshine on his face, or to breathe fresh air.
Death with Dignity
Many articles have been written about the importance of "Death with Dignity." This concept, however, needs to be defined and operationalized. We found that patients often experienced a loss of dignity during the last days of their lives.
Mr. Smith, the man described previously, had difficulty feeding himself. He was right-handed, and he was paralyzed on the right side. His wife came daily to assist him with lunch and dinner, but the staff did not help him with breakfast. Mr. Smith had a good appetite, and he struggled to eat by himself. Despite the fact that he had a swallowing disorder, he was often poorly positioned at mealtime. When he finished breakfast, there were scrambled eggs in his beard, on his chest, and in the bed. When the tray was collected, the CNAs did not remove the eggs from his beard or his clothing; we found him hours later in this condition.
Mr. Smith was also neglected in other ways. During a visit shortly before he died, I found that the sheet under him was badly stained with urine. His left eye had become infected; it was matted shut. The condition of his mouth was deplorable! His teeth were badly stained, and when he opened his mouth to speak, there was a thick carmel-brown colored material in his mouth making it difficult for him to converse. There was no oral health equipment at his bedside. Using a tissue, I removed the thick mucus-like substance from his mouth and asked if he wanted some water. He shook his head, "yes," and drank about 2 ounces of water. One day later, my research assistant visited Mr. Smith. His teeth were coated with a yellowish-white substance. He said that he had been given mouth care, but we wished that he could have it more often. He died the next day.
Forcing residents to wear diapers, even when they are not incontinent, is an affront to their dignity. Mrs. Yee, a Chinese patient, spoke a dialect that none of the staff could understand. She told my research assistant, who could understand and speak her dialect: "I want to go home. I have no one to talk to here. There is nothing to do. I just want to be in my own home. Here I have to wear a diaper. I don't like that. Sometimes at night when I want to go to the bathroom, the nurses won't take me there; they say that I should just go in the diaper. I can't understand why they won't help me go to the bathroom when I can walk there."
Psychosocial Care
When people are dying, they and their families face significant psychosocial challenges. Anxiety, depression, fear, and emotional distress are common, and communication with health care providers is essential. Although the care plans often stated that residents and their families should be allowed time to talk about their fears and concerns, many had little or no knowledge of what to expect as death became imminent. Often, there was no one to whom they could talk. When interviewing an RN, she commented: "We end up neglecting patients because we just don't have the time to spend with them. Patients don't get changed as often as they should, and they don't have anyone to talk to."
Some families said that they did not know how to ask the right questions, and others were fearful of doing something harmful. Mrs. Hanes, a 62-year-old woman, was dying of breast cancer. Her greatest wish was to die at home, but that meant that her 33-year-old daughter, who had a 1-year-old son, would be responsible for her care. The hospice nurse encouraged the daughter to take her mother home. "They make it sound as if it is going to work so easily," the daughter said. "But they don't have a baby at home to take care of." The daughter told the doctor that she was afraid to take her mother home. "It just doesn't seem fair that I should have to do this for the first time with my mother, especially because she's so young. I should have done this with a grandmother or somebody older who was expected to die. What if I fail? What if I don't do the right thing? The stakes are too high! This is too important to have to do as my first chance!"
Caregiver Burden
Although there have been some studies on caregiver burden for family members in nursing homes (Dupuis and Norris 1997; Gaugler, Leitsch, Zarit, and Pearlin 2000; Kolb 2000; Marchand, Beland, and Renaud 1994; Rudd, Viney, and Preston 1999; Stull, Cosbey, Bowman, and McNutt 1997), there is a need for research on the burden that families of terminally ill nursing home residents experience. Many families came daily to provide basic care, such as bringing food, feeding their relatives, turning them from side to side, changing their bedding, and overall monitoring their care.
A 22-year-old-college student came twice a day, from 11 a.m. to 2 p.m. and from 6 to 7 p.m. to oversee her grandmother's care. She feared that if she did not come, the staff would not turn her grandmother or change her when she was wet. "I would feel really very sorry if I couldn't be here," she said. When asked how she could manage her college studies and still stay with her grandmother every day, she began to cry. "I just couldn't do it [i.e., not come every day]. I just have to be here. I can't even think about not being here. I think about her all the time, and I'm really tired." When asked if she was getting enough sleep? She replied that she gets about 8 hr, "But it's not good sleep. I'm not sleeping well because I'm concerned about my grandmother."
The spouses of two terminally ill residents spoke of committing suicide. Mrs. Mason had a massive stroke. Her husband came every day, afraid that if he did not come, his wife would not receive adequate care. He stated that he was discouraged and tormented and that his mind was coming apart. "I get terribly depressed and lonely when I get home," he said. "I'm terrified of the loneliness after my wife dies. I just don't know what I'll do about that. But then, when I come here, she's so impaired, and part of her died with the stroke. I just feel distraught about that. I don't know what to do. At least I can come here and be with her." The social worker at the nursing home referred him to a support group at his HMO.
Mr. Lee came every day to care for his 50-year-old wife. He stayed all night so that he could turn her every 2 hr; thus, he was getting little sleep. He reported that the nurses became angry when he asked them to change his wife's diaper, so he changed it for her. Mr. Lee also spoke of suicide, but when his suicidal thoughts were explored, he said that he did not really mean to say that he would commit suicide, but he was under a great deal of stress. In this nursing home, a social worker with special training as a grief counselor was available to patients, their families, and the staff.
In summary, the prospective ethnographic study reported here found that lack of attention to cultural needs, the residents' cognitive status, inadequate staffing, and inappropriate and inadequate communication between health care providers and nursing home residents and their families influenced the experience of dying. The review of the literature disclosed that most of the studies that have provided data on the experience of dying, with the exception of the SUPPORT study (1995), have been primarily small, retrospective studies in acute care hospitals, focusing on patients with cancer.
Additional prospective studies on the experience of dying that investigate the phenomenon contextually, among various ethnic populations, and in multiple settings (e.g., nursing homes, assisted living facilities, hospitals, hospice, and in the home) are needed.
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Progress has been made in the development of principles and guidelines for the care of people at the end of life (AGS Ethics Committee 1995; Cassel and Foley 1999; Lynn 1997; Mezey et al. 2001). There is a need, however, to investigate the barriers and facilitators in implementing these principles so that everyone, wherever they die and whatever their trajectory of dying, will die comfortably, with dignity, and with the best care that interdisciplinary, palliative care can offer.
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Acknowledgments |
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Received for publication September 4, 2001. Accepted for publication April 25, 2002.
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