Abstract
Background:
With the renewed emphasis on palliative care in Singapore, coupled with a dearth of studies on provision of palliative care in acute services, it is timely to explore the experiences, barriers and challenges faced by oncology nurses in the acute care setting.
Aim:
This study aimed to explore nurses’ experiences of providing palliative care in the acute oncology care unit.
Method:
An exploratory descriptive research methodology was adopted. Focus group interviews, involving a total of 24 nurses, were conducted. Interviews were audio-taped and transcribed verbatim. Data was analyzed using an inductive content analysis approach.
Results:
Five key themes emerged from the analysis: (1) nurses’ perceptions of palliative care; (2) multiple roles of nurses in palliative care; (3) emotional burden of providing palliative care; (4) misconceptions of palliative care; (5) challenges in providing palliative care.
Conclusion:
The provision of palliative care in the acute care setting remained challenging. This is partly due to the attitudes of patients, families and healthcare workers, as well as organizational factors such as lack of training. Nurses play an important role in giving and facilitating palliative care for patients in the hospitals. Future studies can explore interventions to help overcome the challenges that are impeding nurses from providing high-quality palliative care in the acute care setting.
Introduction
Palliative care in Singapore and the acute care setting
The World Health Organization defined palliative care as
an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
1
Palliative care helps patients meet their needs during the final stages of their lives, alleviates suffering and maximizes their quality of life. 2 Singapore’s rapidly aging population and increasing incidence of cancer and chronic illnesses is naturally leading to an increased demand for palliative care. 3 The Ministry of Health in Singapore is also working towards providing high-quality palliative care in the local setting by developing palliative care services across all care sectors in Singapore and using evidence-based guidelines to provide holistic care for patients. 4 Palliative care services for patients are usually initiated from the acute care sector. Hence, it is important to look at the delivery of palliative care in the acute care settings to ensure that patients receive the best palliative care right from the start.
Experiences of providing palliative care
Most of the published studies on health care professionals’ experiences of palliative care have focused on the emotional wellbeing of specialist care team members. Palliative care nurses in an academic hospital tend to inhibit their emotions and adopt a rational attitude in palliative care, to avoid triggering emotional attachment when caring for the patients. 5 In the first local study on the experiences of palliative homecare nurses in Singapore, it was revealed that the palliative homecare nurses generally had a positive experience caring for the dying as they were able to demonstrate the true meaning of caring and connect in depth with the small number of patients under their care. However, participants described a sense of powerlessness and frustrations when they were unable to initiate treatment during their home visits, especially when they were new to the job and there were no designated doctors assigned to the team. 6
The delivery of palliative care in the local acute care setting involves both specialist palliative care teams and the general medical teams. The current approach in Singapore’s health care system is to ensure that all new health care professionals possess basic knowledge in palliative care. 7 Most acute care-admitted patients may be receiving palliative care from the general medical team in which the physicians have basic training in palliative care. However, Rodriguez et al. 8 suggested that a specialist palliative care system (including specialist physicians) may provide better quality of care for these patients, as such a team is trained in providing the specialized care required. A recent study by Phua et al. 9 concluded that there were infrequent discussions with patients on end-of-life decisions, and excessive burdensome interventions with inadequate palliative care for the dying in the acute care setting where there was no palliative care specialist. Although there have been some studies conducted on palliative care in Singapore,5,6,9 there is still a lack of local studies which focus on the experience of nurses providing palliative care in the acute care setting.
Background
Challenges of providing palliative care in an acute care setting
In recent years, health care institutions in Singapore have been employing more foreign nurses due to a shortage of nurses. 10 The number of foreign nurses in Singapore has increased from 26% in 2012 to 29% in 2014. 11 The challenge of providing effective palliative care in the acute care setting is intensified due to differences in language, culture and practice as our nursing force is becoming increasingly diversified. 5
End-of-life discussions are especially challenging for health care professionals in an increasingly diverse society, with the involvement of emotional and interpersonal issues. 12 Western cultures tend to emphasize more on autonomy, whereas Asian cultures believe that communities and families, not individuals alone, are affected by life-threatening illnesses and the accompanying medical decisions. Asians value beneficence by encouraging hope even in the presence of terminal illness. Although guidelines on patient-centered communication in palliative care are available, there are limited studies focusing on exploring whether a multicultural society poses additional challenges for foreign nurses.
Studies have also shown that health care professionals faced difficulties communicating end-of-life issues with patients and their families.13–17 Inadequate communication often results in less satisfactory care, as many patients and families preferred health care providers to be more forthcoming in initiating end-of-life discussions and in assisting them to make suitable choices in planning of care.14,15
Oncology nurses play an important role in communicating end-of-life issues with patients and families. These conversations take time, and often multiple communication sessions are required. 13 Nurses are deemed to be in an ideal position to communicate end-of-life issues with patients and families on account of the higher attending rate and more extensive contact time with them. 16 In addition, nurses were deemed able to translate patients’ experiences and the language of medicine into something that the patients and their families can understand. This interpretive role of the nurse is key in ensuring that all decisions are consistent with patients’ and families’ values and goals. 13 However, it is unclear whether local oncology nurses had managed to adopt such a role in a busy acute care setting.
Thus, it is important to explore the challenges faced by oncology nurses when having end-of-life discussions with patients and families, as it could potentially impede effective palliative care.
Aim
This study aimed to explore nurses’ experiences of providing palliative care in the acute oncology care unit.
Method
An exploratory descriptive methodology was adopted. 17 This method allowed us to gain an insight and understand nurses’ experience in their own right.
Sampling
Purposive sampling was used. Participants recruited were registered nurses with at least 6 months of working experience in an oncology or hematology ward and had prior experience in providing palliative care. Nurses in managerial or nurse clinician roles, agency nurses, part-time nurses, student nurses and nurses on permanent night shift were excluded as they had differing roles (as compared with registered nurses) with regards to delivery of palliative care.
Data collection
Focus group interviews were conducted. Focus groups were used as this method encourages a greater degree of spontaneity of responses and views; participants may feel supported and empowered by a sense of cohesiveness and hence express more views and opinions. 18 The focus group interviews were semi-structured to elicit information from the participants. An interview guide was developed after reviewing the literature on provision of palliative care by nurses. 19 The interview guide covered areas such as the nurses’ perception and the benefits of palliative care, their experiences in providing palliative care, the challenges they faced when providing palliative care, and their suggestions for improvements in palliative care.
A total of four focus group interviews were conducted by the investigator, with six study participants in each focus group. Another team member was also present to act as a moderator and to record the non-verbal cues of the participants. The participants consisted of mixed groups of junior and senior nurses. The interviews were conducted in a private room within an inpatient medical oncology ward. Each session lasted approximately 1 hour. Basic demographic data of the participants was also obtained. All interviews were audiotape-recorded, and field notes were taken on non-verbal cues displayed by the participants during the interviews. In order to increase credibility and dependability of data, all interviews begin with this key question: What is your perception of palliative care? Probes were used to clarify the meaning of responses and to help participants to elaborate on their comments.
Data analysis
The audiotape recordings of the focus group interviews were transcribed verbatim. Non-verbal expressions were also included in the transcripts. The transcripts were verified against the audiotape recordings by two independent research team members.
An inductive content analysis approach was used to analyze the data. This involved open coding, creating categories and abstraction. In open coding, notes and headings were written in the transcript while reading it. The transcript was then read through again, and notes written down to describe all aspects of the content. Higher-order headings were then grouped into categories by comparing data that belong to a particular group and other notes that do not. During abstraction, a general description of the categories was formulated. 20 To ensure confirmability, the whole study team read through all the transcripts, came up with themes independently and explored areas where a consensus could not be reached.
Ethical consideration
Ethical approval was obtained from the SingHealth Centralised Institutional Review Board. Written informed consent from all participants was obtained prior to the interviews.
Results
The participants’ years of working experience ranged from less than 3 years to more than 12 years. Their ethnicities include Chinese (
Summary of participants’ demographics.
Five main themes were identified: (1) nurses’ perceptions of palliative care; (2) multiple roles of nurses in palliative care; (3) emotional burden of providing palliative care; (4) misconceptions of palliative care; and (5) challenges in providing palliative care. Themes and sub-themes are illustrated in Table 2.
Summary of themes and sub-themes.
Theme 1: Nurses’ perceptions of palliative care
The nurses perceived palliative care to encompass addressing patients’ physical and emotional needs. Nurses reported the need for personalized care and how comfort is prioritized in palliative care. Nurses also spoke of the need to care for the family, especially in terms of providing information and emotional support.
Subtheme 1: Individualized care
Palliative care was deemed as providing individualized care that catered to the specific needs of the patients. Besides the patient, this care was also often extended to the caregivers and family.
Subtheme 2: Comfort care
More specifically, palliative care was commonly associated with rendering comfort care to reduce the suffering of the patients and ensure maximum possible quality of life.
Subtheme 3: Emotional support
Besides comfort care, providing emotional support was also perceived as palliative care. The nurses indicated that emotional support is essential to guide patients who are anxious and worried about their condition.
Subtheme 4: Care for the family
Palliative care was also described to encompass care for the patient’s family. Helping family members to cope and providing them with relevant information and emotional support were viewed as a part of palliative care.
Theme 2: Multiple roles of nurses in palliative care
Nurses viewed themselves adopting different roles when rendering palliative care. Upholding the rights of patients, coordinating care and spending time with the patients were the three main roles identified by the nurses in this study.
Subtheme 1: Advocator
Nurses acted as advocators for patients, ensuring that the decisions made are always in the patients’ interests.
Subtheme 2: The intermediary
Some patients may require step-down care such as hospice, or choose to go home to die. The nurses helped by acting as the intermediary to assist the patients and family members cope with this care transition from the acute care hospital setting back to the community or home. Besides transition care, nurses were often seen going beyond their clinical roles to facilitate patients’ special requests.
Subtheme 3: Companion
The nurses also played the role of companion for patients and the caregivers to make them feel less lonely in their journey of care; they acted as a “familiar face” or even as their “family” in times of need. Nurses felt that their presence can mean a lot for patients or caregivers who are in distress.
Theme 3: Emotional burden of providing palliative care
The nurses experienced a myriad of emotions when caring for terminally ill patients. Feelings of sadness, helplessness, guilt and difficulty with letting go were emotions felt by the nurses during their care for these patients. Some nurses indicated that they found it hard to cope with such negative feelings at times.
Subtheme 1: Helplessness
Some nurses felt powerless when they did not know how to help patients who are dying. They witnessed display of sadness but felt that they could not render any help to make their patients feel better.
Subtheme 2: Sad
The nurses experienced sadness as they witness changes in their patients’ physiological and physical conditions. They felt it was unjust when their patients were young and had their lives cut short by illnesses.
Subtheme 3: Guilt
The nurses felt a sense of duty to be able to actively intervene and felt guilt-ridden when they were unable to help patients and families reconcile their differences.
Subtheme 4: Bereavement
The nurses placed a high value on their relationships with patients and recounted that it is an integral component of palliative care. When patients die, nurses grieve as well, and they sometimes found it hard to cope with the bereavement process.
Theme 4: Misconceptions of palliative care by other health care professionals
The nurses thought that other health care professionals did not fully understand the indications of palliative care, and might not be adequately trained to provide comfort care. This led to differences in opinions during the provision of comfort care. Difference in opinions made it more difficult for nurses to advocate for palliative patients who needed the appropriate care. Nurses felt that the wrong type of care was provided for their patients.
Subtheme 1: Palliative care equates to hastening death
Health care professionals were portrayed as holding misconceptions about palliative care. Symptom control such as ensuring adequate pain relief was equated with hastening death. Health care professionals were found to be less receptive towards palliative care when they had not received adequate training on palliative care.
Subtheme 2: Palliative care is giving up hope
In other instances, palliative care was associated with giving up on the patient, a notion which was unfamiliar and unacceptable to some junior doctors.
Theme 5: Challenges in providing palliative care
Although palliative care is becoming increasingly common in the inpatient acute care setting, the nurses still faced multiple challenges such as difficulty in initiating palliative care for patients, language and cultural differences and conflicting expectations from families. Some nurses also indicated that the low nurse-to-patient ratio and lack of knowledge prevented them from providing good palliative care.
Subtheme 1: Ambiguity in role
Initiation of palliative care was challenging when the patient’s prognosis was not disclosed to either the patient or the family members.
Some nurses felt that doctors have to initiate palliative care first before they can step in to play their role in providing palliative care.
Subtheme 2: Lack of understanding on goals of palliative care by families
The families (of patients) did not understand the meaning of palliative care and often have expectations that were not in line with the palliative teams’ management plans. They thought that the health care professionals were not caring and were heartless when seen not providing active interventions.
At times, the nurses’ professional judgement may differ from the families’ expectations when caring for the patient. Conflicting values made palliative nursing more challenging and added to nurses’ dilemmas and frustration while providing care.
Subtheme 3: Language, cultural and ethnic barriers
Language and cultural differences hindered nurses in rendering good palliative care to patients. The foreign nurses in particular indicated how language and cultural differences deter them from providing good palliative care for the patients.
In cases when nurses shared the same ethnicity with the patients, they found it easier to build rapport and communicate with them.
Subtheme 4: Unconducive environment and low nurse-to-patient ratio
Acute care settings were thought to be unconducive for providing palliative care due to the patients’ mix and acuity. Nurses found switching between caring for acute medical and palliative patients challenging.
Time and manpower were not enough to care for palliative patients as the nurses still need to nurse other patients with acute conditions.
Subtheme 5: Skills and knowledge deficit
The lack of knowledge in palliative care created fear and feelings of uncertainty in nurses when they approached terminally ill patients. They felt incompetent in their therapeutic communications with their patients. This was most evident in nurses who had just graduated, where they were lost and unsure about managing palliative patients.
Discussion
The nurses in this study perceived palliative care as individualized care, maximizing comfort for the patient, providing emotional support and caring for the family. This is in consonance with the fundamental concepts of palliative care which encompass personalized care and family support. 21 Likewise, providing comfort was described by nurses as a holistic approach that is synonymous with individualized care. 22
The nurses played multiple roles in palliative care and this was consistent with previous findings. Advocating, coordinating, mobilizing resources and caring were identified by a group of oncology nurses who were interviewed for their perspectives of nursing roles in palliative care. 23 Similarly, the nurses in this study viewed themselves as advocators of patients, or an intermediary to coordinate resources and provide care and companionship to the patients. These roles are also in line with the World Health Organization’s definition of palliative care.
Palliative nursing has been associated with causing stress and emotional burden for nurses. The nurses in this study faced emotions such as helplessness, sadness and guilt when caring for palliative patients. Evidently, the personal emotional investment in the nurse–patient relationship can lead to fatigue and stress for nurses.22,24 A recent literature review concluded that nurses experience a myriad of feelings when caring for dying patients in the acute care hospital setting. Nurses felt stressed, incompetent and impotent, and perceived a sense of inadequacy when nursing palliative patients in the hospital. 25 Likewise, stress was identified as a personal cost of nursing by a group of district nurses who provided palliative care to their community in the United Kingdom. 26 Emotional stress experienced by nurses in the workplace should not be ignored, as it will affect their overall health and work performance which, in turn, may impact on the quality of patient care.
Interestingly, many health care providers still hold misconceptions about palliative care. The nurses in this study indicated that they worked with physicians who misunderstood the meaning of palliative care and were reluctant to initiate palliative care for patients. Other studies have presented similar views where clinicians had reservations about initiating palliative care and transiting to an end-of-life focus.27–30 There is still a focus on acute and interventionist care in acute care settings, and this often contributed to a delayed referral of patients to palliative care. Feelings of failure have also been reported by physicians when they initiate palliative care for their patients in the hospital, even if this was introduced alongside active care. 29
Initiating palliative care in the acute care setting has always been challenging for nurses. Some nurses in this study felt that doctors still play a pivotal role in initiating palliative care in the hospital. This is consistent with the results of Csikai, 14 where the need for palliative care was first mentioned to patients and caregivers by the physicians. 14 Referral to palliative care is still much dependent on the doctors. 8 Furthermore, a focus group interview with a group of health care professionals identified that the point of transition to palliative care in the acute care setting was often ambiguous, and even when the transition to palliative care did occur it was often delayed or near the time of death. 28 The fact that hospitals focus on acute medicine and have little discussion with the patients and families regarding the prognosis made the start of palliative care for patients challenging. In addition, nurses in this study at times faced the dilemma of telling the truth, when either the patient or the caregiver refuse to disclose the diagnosis. This can contribute to ineffective delivery of palliative care. Honesty between health care providers and patients or the caregivers is deemed as essential to deliver the best care, as all stakeholders need to have the same goal in mind. 23
Disagreement between family members and the health care providers was another barrier highlighted by the nurses in this study. Expectation mismatch can lead to delay in palliative care for the patients. This is evident in Asian culture, where there is less emphasis on individualism and more on what the caregivers expect you to do on behalf of the patients. 24
Similarly, for nurses in this study, language and cultural differences act as a hindrance to nursing palliative patients. A big portion of the nursing workforce is made up of foreign nurses. Foreign nurses tended to have language barriers with the local patients. 5 Given that Singapore is a multicultural society, communication issues involved in the nurse–patient interaction will be more complicated. Likewise, cultural differences resulted in nurses withholding communication with patients of a different religion for fear that they might offend the patients. 5 Patients were also found to be less receptive in communicating with nurses of a different language and culture. 31
The nurses in this study found it hard to care for both acute and palliative patients in the same setting, as their nursing needs differ greatly. In a recent review, the unconducive hospital environment was highlighted as one of the challenges faced by patients dying in an acute care setting. 32 Similarly, other studies have reported the lack of privacy for palliative patients and their families.25,33,34 The hospital environment, which encompasses the physical surroundings and the social interactions with hospital staff, can impact on the quality of palliative care experienced by patients. 35 Balancing the optimum physical environment for palliative care in a clinically focused hospital setting is tough. The acute care hospital is not designed for end-of-life care. 32 Besides, the ability of nurses to provide optimal care for palliative patients in the acute care setting is limited by the heavy workload in the acute care ward; this in turn prohibits them from spending enough time with the terminally ill patients. 25 A qualitative interview conducted with 10 nurses in an acute care unit found that division of nursing time between patients of different acuities is difficult, hence it is even harder for them to spend additional time with palliative patients who naturally require more attention and nursing time. 33 This is consistent with the encounters by nurses in this study, where they experienced difficulties in switching care between the two extreme groups of patients and felt that they were not devoting enough care time for their palliative patients.
Inadequate skills and knowledge in palliative care were reported by nurses in this study. This is a common finding in other studies, where general nurses perceived themselves as undertrained for managing patients with palliative needs.24,36,37 When nurses are not given the necessary training in palliative care, they were reported to be less confident in discussing sensitive topics such as death and prognosis with patients and caregivers. 36 Likewise, nurses indicated the need for palliative training to help them provide optimal care for patients. 22 Emphasis was placed on providing communication training tailored to the acute care hospital setting.28,24
Limitations
The findings of this study were interpreted by our researchers based on this specific group of nurses during this period of time. Therefore, our findings cannot be generalized to other populations or contexts. Also, group dynamics within focus groups may have hindered junior nurses from sharing their experiences among more senior colleagues.
Conclusion
This study highlighted nurses’ experiences in providing palliative care in the acute care setting in Singapore. Nurses play a huge part in providing emotional and psychosocial support both to patients and families. The acute care sector is still considered inappropriate and under-prepared for palliation, and the hospital environment itself is not suited to holistic palliative care. The provision of palliative care services in Singapore is still very much inhibited due to the attitude towards palliative care shown by patients, families and health care workers. This highlights the numerous challenges that the provision of palliative care in the acute care sector in Singapore still faces. Future studies can look at interventions to help overcome these challenges that are impeding nurses from providing high-quality palliative care in the acute care setting. It will also be worthwhile to explore the views and experiences of other health care providers and identify the knowledge gaps and challenges of initiating palliative care in the inpatient environment.
Footnotes
Declaration of conflicting interests
None declared.
Funding
The study is funded by SGH Research Grant.
