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Death can be difficult to accept, unimaginable, and unexpected. Critical care nurses are directly involved with patients and their families, and their experience can identify the best practices for end-of-life care. The purpose of this descriptive study was to identify the relative importance of helpful behaviors and obstacles that affect caring for dying patients and families in both adult and pediatric intensive care units as perceived by critical care nurses. The results show that for end-of-life care, nurses most strongly value factors that focus on the well-being of the family, and similar opinions were held by nurses from both adult and pediatric intensive care units.
The history of death occupies a privileged place in history.1 Attitudes toward death have changed through history, and with the industrialization of society, death has been more difficult to accept and has been viewed more negatively.2-4 Since the middle of the 20th century, death has occurred most frequently in the hospital setting, where care is offered that cannot be provided at home.3-5 Health professionals continually face and must accept the reality of death, which contradicts their goal to conserve health and life.6
Advances in technology have increased the expectation of living through hospitalization. These advances have led to more complicated language, increased the number of treatment options, and complicated decision making, which may be barriers that hinder quality care in the process of dying.7 These challenges were shown in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments report8 as well as in other studies.9,10
Nurses are health care professionals who spend more time in direct contact with patients. They are most likely to have to face a patient's death directly.6 For nurses, providing care in a "good death" has positive effects, but there are negative effects when there is a "bad death."11 Therefore, their contact with patient and family suffering can be stressful if there are inadequate resources.12 Nurses have the important goal of providing comfort care to the patient and family. Communicating the needs and preferences of the patient with the rest of the team while still providing appropriate care in end-of-life situations is also another important role of the nurse.13
The evolution of the intensive care unit (ICU) demonstrates the technological power of modern medicine.14 For deaths in the ICU, the highly technological atmosphere is not a natural environment for the end-of-life process.15 The situation is difficult because of the strong emphasis in the ICU of providing lifesaving measures through technology.12 If the patient, family, and health professionals are focused on saving the patient, then the emotions after death will be frustration and impotence.16
Patients and health professionals recognize the necessity of providing good care during the process of dying. In this situation, health professionals tend to value physical interventions and families emphasize psychological and spiritual care.17 The patient, family, and health professional may have different views of what is the appropriate level of care at the end of life. The care plan should also include the family providing care to the patient, which allows them to spend more time with the patient and satisfy their need to be close.18 Health professionals say that families need psychological support, privacy and appropriate space, more personnel who are sufficiently educated in the process of dying, an appropriate atmosphere, information, and more time to visit, particularly in the case of dying children. Children should do not die alone without their parents.19 Studies indicate that it is very important that the medical team agrees on a plan of care, the family accepts the patient is dying, there be appropriate space for intimacy, and support to help the family react to the situation.15 Sometimes, the family can complicate the patient's care. It is necessary to understand that this difficulty is minimal to the nursing staff as compared with the suffering of the family.20
The death of a child is something unimaginable and unexpected.21 No parent expects to outlive his/her child. Providing care to a child who is dying is stressful. Most childhood deaths occur in hospitals, with most occurring in an ICU.22-25 One right of hospitalized children is "the right to a death in presence of the family."26
The clinical and technological advances in the ICU mean that some conditions that were previously fatal can be overcome. The intense effort to treat a critically ill child, however, can prevent the family from being involved. The family can feel helpless, and it is difficult for them to understand what is happening. The family is suffering, has fear and anxiety, and requires attention and information from health professionals.23
For these reasons, the purpose of this study was to identify aspects of care that health professionals consider to be either facilitators or barriers to providing good care to patients and their families in end-of-life situations.
This descriptive study was conducted from October to December 2010 and involved staff nurses with at least 3 months of experience working in adult or pediatric ICUs in 2 high-complexity hospitals of the Sanitary Public of Madrid, Spain. The study was approved by the hospital Ethics Committee of Clinical Investigation and the nurses' board at each participating hospital.
Data collection was performed by a contact person at each participating hospital. The questionnaire was distributed in open envelopes, with surveys and consents to be returned in closed envelopes to maintain confidentiality. Before being distributed, the questionnaire was pretested. The questionnaire took 20 to 35 minutes to complete.
The questionnaire took 20 to 35 minutes to complete.
Demographic data were collected, including age, sex, and marital status. Data concerning professional experience included (1) the hospital and ICU where the respondent worked, (2) years of experience as a registered nurse and in the ICU, and (3) whether the respondent had taken courses in caring for patients at the end of life. Descriptive statistics (frequencies, percentages, means, measures of central tendency, and dispersion with 95% confidence interval) and Student t test and analysis of variance testing were performed using the SPSS version 17.
To analyze which strategies the staff nurses considered that can help or hinder care to end-of-life patients and their families, we used the Questionnaire of Helps and Obstacles in Providing End-of-Life Care to Dying Patients and Their Families, developed by Kirchhoff and Beckstrand.27 This questionnaire contains 48 items. A similar version was developed by Beckstrand and Kirchhoff28 that contained 53 items using a Likert scale format for responses, ranging from 0, not a help, to 5, extremely intense help. The scale also could be scored using 0, not an obstacle, 5, extremely large obstacle. We used a translated and validated Spanish version following the technique of inverse translation.15 The Cronbach [alpha] values were .83 for helps and .86 for obstacles.
Of 472 distributed surveys, 246 were returned. Of these, 19 were eliminated because less than 60% of the questionnaire was completed. The response rate was 48.1%, with 227 questionnaires analyzed. Table 1 shows demographic data. The number of nurses who had taken courses on end-of-life care was 88 (38.8%). Of these, 84 nurses (37%) indicated that they had attended from 1 to 7 courses.
Most of the adult ICU nurses (95.9%) worked in units with limited visitation. Only 56.2% of pediatric nurses reported working in units with limited visiting hours.
To evaluate the aspects that nurses perceived as supporting or obstructing care to end-of-life patients, we used the Questionnaire of Helps and Obstacles to Providing End-of-Life Care to Dying Patients and Their Families. Nurses indicated their opinion on a Likert scale from 0 (does not help/not an obstacle) to 5 (maximum help/maximum obstacle).
In Table 2, the mean and standard deviation of each of the helpful items are provided in descending order, and P values are provided comparing the adult and pediatric ICU nurses. To help in end-of-life care, nurses most strongly consider that families must have the possibility of a peaceful and dignified bedside scene when the patient has died and have a place to cry in private. The smallest perceived benefit was for a member of the Committee of Ethics to visit daily and that physicians put hope in tangible terms.
The adult ICU nurses most strongly consider that there be a peaceful and dignified bedside scene when the patient has died. They least strongly valued that the family helps to provide care for the dying patient.
Nurses from pediatric ICUs scored highest that the family have enough time to be alone with the patient after death. Pediatric ICU nurses least strongly considered physicians providing hope in tangible terms as helpful. For this issue, there was a significant difference (P = .04) between adult and pediatric nurses, with pediatric ICU nurses perceiving less benefit.
In Table 3, the mean and SD of each items are provided in descending order. Nurses perceived the largest obstacles to be (1) when physicians are evasive and avoid the family, (2) when the terminally ill patient experiences a painful intervention, and (3) when the family is not accepting of a poor prognosis. Nurses considered smaller obstacles to be when the nurse had knowledge of a poor prognosis between the family and the need to care for a brain-dead patient who will be an organ donor.
For nurses in adult ICUs, the largest obstacles were providing painful interventions and physicians who avoid the family. Nurses in pediatric ICUs similarly viewed evasive physicians as an obstacle. Pediatric nurses also highly ranked as an obstacle when families are not accepting of a poor prognosis.
Both adult and pediatric ICU nurses considered previous knowledge of a poor prognosis and caring for brain-dead organ donors as small obstacles to care. There were no significant differences in opinions between adult and pediatric nurses.
The survey response rate of 48.1% may have been a result of the sensitive nature of the topic. Puntillo and colleagues29 and Nelson and colleagues30 had 30% and 49% response rates, respectively. This may reflect that health professionals have a level of fear and discomfort dealing with end-of-life issues. This fear is influenced by personal factors. Anxiety12,31,32 promotes emotions such as fear.33,34 Health professionals hide their fears and often avoid speaking of them.35 This is a mechanism of emotional defense.36
Others have reported that nurse training in end-of-life situations is not high.15,19,27,37,38 Most of the respondents in our study have not taken end-of-life courses. This may be because of the same fear of the subject as mentioned above. Nurses may consider the subject interesting, but they still are reluctant to participate in these courses. Little end-of-life content is included in most nursing education programs.39-41 Nurses may benefit from continuing education.7,13,42,43
Little end-of-life content is included in most nursing education programs.
Similar to our findings, other authors have also identified the importance of privacy and providing an appropriate place for the patient and family to feel more comfortable during the process of death.26,44 Families express the desire to be far away from technology and other noises45 to express their emotions with privacy and to be away from other patients to promote a dignified death.36,46-48
The top 4 items identified by ICU nurses that help in providing end-of-life care are, in descending order, (1) the possibility to have a dignified bed scene, (2) have the family a private place for cry, (3) family members having enough time to be alone with the patient after his/her death, and (4) the family accepting that the patient is dying. Nurses from both pediatric and adult units identified these same factors with little difference in their rankings. These highest scoring items reflect the needs of the family regarding privacy, appropriate space, and adequate time to facilitate the family's acceptance that their relative is dying. This result is similar to the findings in other studies.15,27,28 Some studies identified "all physicians agreeing about the direction of care" as the greatest help.15,27 Nurses participating in our study identified this as moderately helpful.
Concerning the interactions between the nurse and the family, nurses assigned moderate value to "nurse having enough time to prepare the family" and "teaching family how to act with the patient." These actions certainly can help the well-being of the family. Similar to Kirchhoff and Beckstrand,27 nurses viewed "family show gratitude to the nurse" as moderately helpful.
The item "auxiliary personnel helping with patient care" was reported as highly helpful. Beckstrand and Kirchhoff28 found auxiliary personnel to be less of a help. This difference may reflect the different organizational structures of nursing staff between the 2 countries.
The 4 items identified as less helpful, in ascending order, were (1) having ethics committee members visit daily, (2) physician providing realistic hope, (3) family helps care for the patient, and (4) possibility that other nurses care for the nurse's other patients for a brief time. These items are related to different aspects of patient care. The low value of having an ethics committee member visit daily has been reported by other studies.15,27,28 The involvement of family in directly caring for the patient could be considered as a help for the nurse, but the results indicate the opposite. This may be because patients require highly specific care, and they are surrounded by tubes and various machines that require special education to use. However, family involvement is recommended by some authors.45 The adult and pediatric ICU nurses did differ on the relative importance of family help, with the pediatric nurses valuing family help more. One possible reason is that pediatric visiting hours were more liberal, allowing more time for nurses to get to know the family.
We found also that nurses value less whether a physician instills realistic hope. Pediatric nurses ranked this statistically less important than did nurses from adult units.
We analyzing obstacles to care, we found that the highest items were (1) physicians evasive with the family, (2) providing painful interventions to the patient, (3) family not accepting poor prognosis, (4) physicians not allowing patients to die from the disease process, and (5) family requesting life-saving measures, contrary to the patient's wishes. These were ranked very similarly by both pediatric and adult ICU nurses.
The barrier "the family does not accept the poor prognosis" ranked highly and similarly to its helpful correlates such as "the acceptance of the death for the family." "Physicians with evasive attitudes" is considered a very important obstacle by both adult and pediatric ICU nurses and is discussed by other authors as well.15,28 Also perceived as an obstacle was "family requesting life-saving measures, contrary to the patient's wishes." Both del Barrio and colleagues15 and Kirchhoff and Beckstrand27 had similar findings.
Also perceived as an obstacle was "family requesting life-saving measures, contrary to the patient's wishes."
Considering factors related to the family, having an appropriate space and time for the family rated highly as a helpful factor. The lack of private space and time was ranked as a moderate obstacle compared with the obstacles of a family not accepting a prognosis or families awaiting information from evasive physicians.
Adult and pediatric ICU nurses had similar opinions on which obstacles were of less importance, but their mean scores did differ. Obstacles of less importance were (1) nurse knows of bad prognosis before the family, (2) takes care of patients with brain death who will donate their organs, (3) nurse has to take care of family anxiety in addition to the patient, and (4) family visiting hours too liberal. These findings were also discussed by del Barrio and colleagues15 and Kirchhoff and Beckstrand,27 except for the importance of dealing with cultural differences. Although taking care of patients with brain death is challenging, we found that nurses view this as a minimal obstacle. The reason could reflect the culture of organ donation and transplants in our country. Even though caring for a patient with brain death is difficult, the effort to provide organs helps those patients on the waiting list. This issue was considered even a smaller obstacle for pediatric ICU nurses.
The effect of visiting hours as too restrictive was scored higher as an obstacle than when visiting hours were viewed as too liberal. This indicates that nurses see more open visitation policies as an important aspect of end-of-life care.
A limitation of our research is that the sample was drawn from nurses who volunteered to participate. The distribution of the social, personal, and labor characteristics of our sample reveals a fairly homogenous group with a profile similar to those in relevant international studies. In addition, the response rate (48.1%) could be a weakness, but low response rate is common in other similar studies.49-55 Death has always been a difficult subject for humans, and for that reason, response rates in scientific studies is often poor. Moreover, the attitudes of respondents may have differed from those of nonrespondents; thus, these findings may be subject to response bias. There may be other associated factors that were not evaluated in the present study. The study was also limited to those questions or situations that were included in the survey, which may not reflect all barriers or situations. Therefore, additional research is needed. Future research may focus on what is helpful to the family members in end-of-life situations as well as the identification of any perceived obstacles by families.
We found that the aspects of care viewed as most helpful focused on supporting the patient's families. We can consider that nurses work better if the family is comfortable with a quiet place. For the family, the death of a hospitalized loved one is hard enough, and it is even more difficult without a quiet place.
Although end-of-life care in the ICU is challenging, nurses believe that it is more difficult when families do not accept the prognosis or when physicians avoid communication with the family. Painful interventions, family requests for extraordinary measures, and physicians not allowing patients to die are also obstacles that prolong suffering and prevent a good death with dignity and without suffering. Nurses do not consider caring for patients with brain death to be an obstacle if the organs will be donated.
Caring for a patient at the end of life may be difficult. Nurses express a particular obstacle when the family does not accept the death. Unfortunately, death is a part of life. It is necessary to accept the inevitable, even with the best medical treatment is available. Therefore, it is necessary to help families understand the need to respect the wishes of the patient and to understand when it is necessary to change from cure to care.
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