Nurses' Experiences Of Providing Palliative Care in an Intensive Care Unit in Saudi Arabia

Sharifa Alasiry (1) Hanan Alshehri (2) Jörgen Medin (3) Carina Lundh Hagelin (4) (1) MSN student, Sweden Critical Care Registered Nurse, Saudi Arabia Saudi Arabia Telephone 0046735978483 Email: Sharifa.alasiry@student.sophia.se (2) MSN student, Sweden Critical Care Registered Nurse, Saudi Arabia Telephone: 0046735978494 Email: Hanan.alshehri@student.sophia.se (3) Senior lecturer, PhD, RN Sophiahemmet University College, Sweden Telephone: 00468406 29 62 Email: jorgen.medin@sophiahemmethogskola.se (4) Senior lecturer, PhD, RN Sophiahemmet University College, Sweden Telephone: 00468406 28 91 Email: carina.lundhhagelin@sophiahemmethogskola.se Correspondence: Sharifa Alasiry Aseer Hospital Saudi Arabia Telephone 0046735978483 Email: Sharifa.Alasiry@stud.shh.se

Abstract Background: In Saudi Arabia the majority of deaths occur in the hospitals. However, there are a few palliative care programs available to meet patients and families? needs. In the 1990s, a team of nurses and physicians in Saudi Arabia thought about the importance of having a special division of care concerning palliative care because of the need for improving palliative care services. The fact is that, there are many foreign nurses who are non-Arabic speaking and who work in different departments including intensive care units. This could interfere with patients' psychological and spiritual needs due to differences in cultures and beliefs. Aim: The aim of this study was to explore the nurses' experiences of providing palliative care for critically ill patients in an intensive care unit in Saudi Arabia. Method: A qualitative study design was used by using semi structured interviews. In total. nine participants who work in an intensive care unit in Saudi Arabia, four women and five men, were included in the study. Audio recordings were used in the interviews; and the length of each interview was less than half an hour. The included nurses worked full time and had been employed for at least three years. Four of the participants were Arabic speaking and the other participants were non-Arabic speaking. All the participants had been working in both intensive care departments, either acute or long-term care. Data was manually analyzed by means of qualitative content analysis. Result: Six themes were identified and all themes reflect different nurses' experiences when they provide palliative care for critically ill patients in the ICU. The themes were presented as the following: Care in the ICU is challenging; Collaborative work to achieve patient's needs; Caring as a holistic approach; experiencing language as a support; experiencing language as a barrier; and Family-patient centered care and support. Conclusion: The authors concluded that communication was a barrier when non-Arabic speaking nurses provide palliative care for critically ill patients and their families. The authors recommended hospital management to increase the number of Arabic-speaking nurses and to provide more translators in day shifts. In addition to have some palliative care nursing courses for all nurses to help them to provide better palliative care, especially spiritual care which has been found to be inadequate. Further studies are needed to study palliative care in the intensive care unit. Key words: palliative care, nurses, experience, intensive care unit, critically ill patient.

INTRODUCTION
We are both critical care nurses and we are interested in studying palliative care in an intensive care unit (ICU). Both of us worked in different hospitals in the Kingdom of Saudi Arabia and we have observed patients with a variety of diagnoses. In Saudi Arabia there are different types of patients and in the hospital settings the ICU is considered to be a very important unit where very sick patients are admitted. Long term ventilated unit (LTVU) is a terminology that is used in many hospitals in Saudi Arabia to describe the intensive care unit that has many patients who are chronically ill and who need to have ventilators for a long time, beside intensive care. Since home care service is not yet mature enough in Saudi Arabia many patients are admitted to an ICU for long-term care and with supervision of critical care staff physicians, nurses and other health care workers.

Palliative care can be given to both acutely ill patients and chronically ill patients, since palliative care aims to alleviate suffering of patients and families. Intensive care units are equipped with very advanced machines and well-trained personnel; many patients are unconscious and the roles of nurses are important as we experienced. To deal with an unconscious patient the nurses need to know how to provide holistic care with respect to dignity. In addition, nurses should ensure that the patient receives all the care he\she needs even with the absence of verbal communication. An effective communication consists of good listening, using non-verbal communication, counseling, clarification and empathy (Lugton & Kindlen, 1999).

Many patients die in an ICU due to severity of their illnesses and this is considered to be a worldwide fact (Becker, 2010). The authors noticed the importance of providing palliative care in the ICU. As the Saudi nursing profession is in developmental stage (Tumulty, 2001) and there are only a few graduated Saudi nurses who are aware of Saudi patients' needs based on the society's culture and religion. Many foreign nurses who are non Arabic speaking, work in Saudi hospitals especially in an ICU and this makes communication and providing desirable care inadequate as we have observed. From this point of view we wanted to do this study in one of the Saudi ICUs to get an insight into this care since it is rare to see palliative care being practiced in an ICU (Byock, 2006).

BACKGROUND
The intensive care unit
Seriously ill patients who have dysfunctional or impaired organs are admitted to an intensive care unit (ICU) in order to receive a high quality of care from nurses and other people with different professions (Hov, Hedelin & Athlin, 2007; Waydhays, 1999). An intensive care unit (ICU) is a special unit in the hospital with staff specialists, which is found to manage seriously ill patients with complicated diseases (Bresten & Soni, 2009).

Many deaths occur in hospitals and half of them in the ICU. When a patient becomes chronically ill and with multi organ failure the needs for end of life care and comfort become important for the patient and the family (Angus et al., 2004). Patients who have physiological dysfunction, metabolic, immunological and neurological dysfunction and need to have prolonged ventilation support are called long term ventilated patients (Douglas, Daly, Brennan, Gordon & Uthis, 2001; Nelson et al., 2004).

Nurses' role in the intensive care unit
Intensive care nurses are in a critical position to identify and assess a patient and the family's needs by using a holistic approach including physical, emotional, spiritual and psychosocial aspects (Dawson, 2008). Critical care nursing is "that specialty job in nursing that deals particularly with patient responses to life threatening problems; it is a licensed profession where the nurse responsible must ensure that optimal care was given to a critical ill patient and their family" (American Association of Critical Care Nurses [AACN], 2010). Most of the nurses in the ICU have skills and experiences in dealing with critically ill patients (Hansen, Goodell, Dehaven & Smith, 2009).

Nurses in the ICU consider the families to be a part of the patients care; in addition those families need to have good support from health care workers in order to help them to cope with the patients' situation (Hov, Hedelin & Athlin, 2007). To meet the quality of care for patients in the ICU, needs a lot of work and time. Many protocols and policies are available in an ICU in order to meet the patients' needs (Ciccarello, 2003). "Experience is defined as the process of getting knowledge, skills from seeing or feeling things" (Cambridge Advanced Learner's Dictionary, 2010).

Palliative care
The modern palliative care was developed in 1960 in the UK. Dr. Dame Cicely Saunders was the first one who developed the patient centered care and holistic approach in palliative care. Dr. Saunders was concerned about patient and family care, home care, teamwork and communication between nurses and families after the patient's death which is incorporated in today's palliative care approach (Abu-Saad, 2001). The modern palliative care concentrates on respecting the patient's autonomy and their decision regarding life and death. In addition the modern palliative care considers practicing ethics in the palliative care with respect to individuals' needs and their values (Have & Clark, 2002). The hospice was developed to cover more cases than cancer; to include patients with neurological, cardiac and respiratory diseases (Lugton & Kindlen, 1999).

Palliative care "is 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" (World Health Organization [WHO], 2010). Palliative care nursing in general consists of three main aspects; symptoms control, support of the family and support of the patient. The role of palliative care nurses is to assess the needs, plan, implement the action and evaluate the outcome (Dunn &Mosenthal, 2007).

The first definition of palliative care came in 1987. It was concerned about medicine in the UK. The definition states that "palliative medicine is the study and management of patients with active, progressive, and far-advanced disease for whom the prognosis is limited and the focus of care is quality of life"(Kim, Fall &Wang, 2005,P.9). Patients die in different places regardless to the causes but everyone has the right to receive support and care (Becker, 2010).

Palliative care approaches
Palliative care includes psychological and spiritual support. These aspects of care are important in any person's life. When treating patients the responsible health care providers should look after them as a human being with respect to cultures, values and beliefs. Palliative care considers relief from suffering and distressing symptoms as a priority to achieve a good quality of life. It regards death as a normal process and it offers support to both patients and families in order to help the patient to live actively until death and help the family in their bereavement (WHO, 2010).

There are keys factors of palliative care that consist of symptom management, patient and family support, teamwork with palliative care workers and communication between workers and patients. Teamwork in the palliative care consists of different health professionals, for example doctors, nurses, social workers, physiotherapist and dietitians (Becker, 2010). The role of the interdisciplinary team is unique especially when the chronically and critically ill patient stays for a long time either in acute ICU or in a long-term care unit. Patients who stay for a long time allow health care workers to build a relationship and a trust for them and the team (Koesel, 2008).

When a critically ill patient is admitted to the ICU it may also have a bad impact on the family's psychological status because of the unawareness as to if the patient will have a prolonged stay or poor outcome. If a critically ill patient has a cognitive impairment the family plays an important role in the treatment decision. The patient's family in the ICU is a decision maker and not just visitors and they are expected to be involved in the patient's care (Camhi et al., 2009).

Palliative care in an intensive care unit
Critically ill patients in an ICU need to have pain and symptoms control to relieve suffering and to enhance a good relationship between the patient and their loved ones (Singer, Martin & Kelner, 1999). Palliative care should be a part of an ICU and it is appropriate for all critically ill patients who need to have aggressive treatment to prolong life with good quality of care (Nelson et al., 2004). Since many deaths occur in the ICU and death is unavoidable is the reason why critical nursing and palliative care needs to be integrated.

"It is important for nurses to understand the connection between palliative care and the intensive care unit" (Dawson, 2008, p.19). Because ethically, ill patients in the ICU and their families may benefit from a palliative care approach, which aims to comfort patients and provide them with good care and alleviate their suffering (Nelson & Meier, 1999).

Palliative care in the Kingdom Saudi Arabia
Saudi Arabia is one of the largest countries in the Middle East with a population of over 28 million people (Gap minder, 2009). In Saudi Arabia there are a few palliative care programs in hospital settings. Alsirafy, Hassan and Alshahri found that about 86 percent of cancer patients died in hospitals; as a result this need for improving palliative care services in the Saudi hospitals is very important (2009). In the 1990s, a team of nurses and physicians in Saudi Arabia thought about the importance of having a special division of care concerning palliative care for cancer patients. As a result, many other hospitals in Saudi Arabia started to develop palliative care programs as well (Al-Shahri, 2002).

Islam is the dominant religion in the country; Islam views human life as holy and asks people to protect it. Muslims view illness as a test of faith from Allah and it is intended as a cleansing by Allah, not as a punishment. At the same time, Allah and His Prophet asked Muslims to seek treatment and not terminate life for any reason (Daar & Khitamy, 2001). The Oath (promise) of the Muslim doctor includes the responsibility to protect human life in all stages and under all circumstances. They have to do the best to rescue the patients from death, disease, pain and anxiety by using an instrument of God's mercy, extending medical care to everyone near and far, good and bad and friends and enemies (Daar & Khitamy, 2001). Furthermore, palliative care also considers the ethical principles which regulate the healthcare for patients including four concepts of ethics e.g. nonmaleficence, justice, autonomy, and beneficence.

Terminally ill patients in hospitals in Saudi Arabia constitute a very important group that needs qualified and sensitive care that addresses their physical, psychosocial and spiritual needs (Alshahri & Alkhenaizan, 2005). A patient is a member of a large family in Saudi Arabia and the family is responsible for the patient when he or she is sick. A patient's relatives in Saudi Arabia ask for treatment till the last moment even if the patient is dying (Young, Moreau, Ezzat & Gray 1997). Halligan (2006) studied the critical care nurses' experiences in Saudi Arabia when providing care in hospitals; the result indicates the importance of integrating religion and culture into patient care. In Saudi Arabia there are many foreign nurses who are non Arabic speaking and they work in different departments including the ICUs and this could interfere with a patient's psychological and spiritual needs due to differences in cultures and beliefs (Al Shahri, 2002; Nixon, 2003).

AIM
The aim of this study was to explore the nurses' experiences of providing palliative care for critically ill patients in an intensive care unit in Saudi Arabia.

METHOD
A qualitative study design was used in the present study. Qualitative research involves analysis of data or narrative material e.g. interview or dialogue, and is considered to be a good method to study experiences (Polit & Beck, 1999).

Data collection
On December 25, 2010, the authors did face-to-face interviews with nine nurses who work in an ICU. A semi-structured interview technique with open-ended questions was used which helped the participants to describe their experiences when providing palliative care in the ICU. This type of interview helps the participants and the authors to follow up the sequence of the questions (Kvale, 2010). see Appendix I.

Participants
Nine nurses were interviewed. Two tape recorders were used to avoid any technical problems. All participants agreed to record their interviews except one nurse. The author used notes to document her experience. Inclusion criteria included nurses who work in the ICU and were working in the morning shift; nurses with experience of more than three years and speak English fluently. They have either bachelor or diploma in nursing and are assigned as clinical nurses. The interviews were done in two separate ICU facilities, the Medical-Surgical and long-term patient care ICU. The interviews were done in the conference rooms in the ICUs. All participants met the study criteria and were chosen by the authors with help of charge nurses in the units. Participants' information papers were given to the participants prior to the interviews (Kvale, 2010). See appendix, II.

To test the credibility of the interview guides, two pilot studies were conducted (Polit & Beck, 1999). The pilot studies showed the relevancy of the answers to the aim of the study and from this pilot study one following question was created.

Data analysis
Data were manually analyzed by means of qualitative content analysis (Polit & Beck, 1999). All the data was transcribed by verbatim transcription and then the relevant data were extracted. Each sentence was then read several times and main ideas were coded according to the specific meaning. Meaning units were used for words, sentences and paragraphs. Condensed meaning units were used for meaning units, then the statements categorized to codes according to the main ideas. After that, all sub categories were summarized to the main categories. The main categories were collected to give meaningful themes, which were used in the result (see Table 1).

Authors ensured that nothing important was missed by reading it again to identify if there was anything remaining.

Table 1: Example of codes, subcategories, categories, and theme from content analysis of narrative about nurses' experience

ETHICAL CONSIDERATIONS
The study was done after approval from the nurses' services department in the hospital. See Appendix, IV.

The name of the participants was not asked for because of privacy issues; international council of nurses' code of ethic takes care of the participants' information and voluntariness and authors considered this aspect during processing the study (International Council of Nurses, 2010). Furthermore, the authors considered the beneficence and the autonomy of the participants in answering the questions. According to the Declaration of Helsinki; the authors considered the participants' rights to withdraw from the study or to refuse to answer the questions for any reason (World Medical Association [WMA], 2011).

During the interviews the authors considered the privacy of the place and confidentiality of the participants so the interviews took place in conference rooms in the ICUs. The interviews were coded with no references to the nurses. The nurses' duty in the hospital was twelve hours and the participants had been taken from their coffee break so snacks were given to the participants at the end of the shift (after the interviews) as a compensation for their break time. In addition the authors are obliged to respect the participants' information and ideas. The authors stated honestly during the transcription of the recorded or spoken information with no alteration to the original data. The authors are responsible for deleting the recorded interviews after finishing their thesis.

RESULTS
In total, nine participants who work in an intensive care unit in Saudi Arabia, four women and five men were included in the study. They included nurses who worked full time and had been employed for at least three years. Four of the participants were Arabic speakers and the other participants were non-Arabic speakers. All the participants have been working in both intensive care departments, either acute or long-term care. The result will be shown according to main themes. Six themes were identified from the data as following:

1- Care in the intensive care unit is challenging.

2- Collaborative work to achieve patient's needs.

3- Caring as a holistic approach.

4- Experiencing language as a support.

5- Experiencing language as a barrier.

6- Family-patient centered care and support.

Care in the intensive care unit is challenging
There were two categories identified from the data (1) physical distress and (2) emotional distress.

Physical distress
There is one subcategory as the ICU is a unique situation, and there are different codes under this sub category. As the ICU is a unique situation there are very sick patients with different diseases, either acute or chronic, for example cancer, in addition to having patients with poor prognosis and who need intensive care and follow up.

"Work in the ICU is very challenging" p6

According to one interviewee "ICU is a stressful area" p3

Care in the ICU needs more time and effort; in the ICU there are a lot of invasive procedures and competencies to perform since there are many long-term cases and very sick patients who need hemodynamic support and good care. Nurses need to provide maximum care to save lives, moreover having open visiting hours in the departments requires nurses to have skills and competencies to deal with different situations.

"We treat the patient until the last moment" p6

Emotional distress
Working in the ICU needs more patience and tolerance because in the ICU there are many young people who die due to different diseases and this is very sad according to nurses in the ICU.
One of the interviewees was crying and said

"I think it is very bad so many people under twenties die, it is touching" p6

In the ICU there is a close relationship between family, patients and nurses and this affects nurses psychologically if something wrong happen to patients, many nurses share the family's feeling and are sympathetically involved.

"I feel really sympathetic with a family if their patient is not good or they're just about to die. This happen frequently, almost weekly" p8

"We are dealing with patient's family and friends and most of them for like 3 years or more, this is a challenge to assess mentally" p2

Collaborative work to achieve patient's needs
The teamwork included two categories, which are identified from the data: (1) interdisciplinary team work (2) and meeting goals.

Interdisciplinary team work
Participants express their experiences for effective teamwork cooperation, which appears as crucial for them during work in the ICU.

Nurses describe the importance of nurses in the interdisciplinary team while they work in the ICU.

"It plays an important role starting with nurse, physician, dietician and pharmacist. We are the first line contact with patients so we are very important and also in the circle so it is very important to work as a team" p9

Nurses showed the importance of nurses' involvement in the teamwork as a primary health care provider.

"Most of the team will come to the primary nurse asking specifically about your patient" p2

Nurses showed that they are the first members who express patient needs and information to the teamwork throughout the ICU.

"We are the ones who deliver the information at the first hand and my patient has fever what I am going to do? And if he or she is on an antibiotic does he need another thing? To bring up the problems concerning the treatment because I am a primary nurse" p2

Nurses describe the need for teamwork while they work in the ICU and this gives maximum benefit to the patients.

"For sure to give maximum benefits of caring for your patients to work as team" P1
Moreover the nurses think about missing care when there is no teamwork in the ICU.
"If we do not have interdisciplinary teamwork and good communication there is no way to get patients better at all like every member in the team is important starting right with the bed nurse, clinical pharmacist, dietician, to consultant and everybody has a role and by communicating with each other like hopefully it will be nothing missing" p8

Nurses mention how they can express their feeling when they work in the ICU with teamwork.
"Everybody should appreciate the others in the unit, it is not the consultant who is dominant, everybody can express ideas and their opinion freely" p8

Nurses assume that exchange of knowledge is good between team members during their working in the ICU.

"Teamwork will affect us, it will make the information better for us; we will get more information from the consultant maybe from nurses and from the consultant to physician so we are sharing" p7

"We try to open our mind so maybe there is something new for us to learn"p2
Exchange of experiences is one of the benefits that come from working together with different nationalities in teamwork in the ICU.

"You work with many people from all over the world, it is great experience"p3

Meeting goal
Nurses are clear regarding how to achieve goals through communication when they work as a team in the ICU.

"Try to achieve most of your goals by communication with the multidisciplinary team" p8

Nurses also identified the importance of achieving clarity and avoiding ambiguity of care during working as a team in the ICU.

" We are a disciplinary team who target the patients' benefits as soon as possible and reduce admission days and to protect the patient from errors"p7

"Whenever we discuss it means that errors will be less and the patients' condition will be better"p7

"We have to involve the staff and clear up all the issues" p2

Nurses find that working as a team meets the patients' needs.
"One team is working for the sake of the patient"p9

Give maximum care for patients in the ICU; nurses describe the benefits from working as a team to meet patients' needs.

"For sure to give maximum benefits of caring for your patients is to work as a team"p1

With the completion of work nurses also play an important role in the teamwork in the ICU.
"Teamwork is great, we call them and they come, great cooperation. I have no problem with my team I think everyone is very professional" P3

"It is like a circle if you eliminate one there will be a gap"P9

Caring as a holistic approach
Caring in the ICU is given under a standardized system with respect to a policy and procedures. In addition to standardized care; holistic care is given with respect to the religion and ethics in the country.

"Actually we are treating here in a holistic manner, not physical aspect not only the pain, we are in Saudi Arabia we are more in the ethic side, more in religion as well" P5
"You have to approach patients in a holistic way, ethical, emotional, physical and psychologically" P9

Standardized care
Nurses' experiences that there are policies for each procedure that helps to give standard of care. There are guidelines that facilitate the work for nurses to manage different symptoms like pain, moreover, referring patients to other specialists when needed to treat different symptoms.

There is a protocol for everything that makes the care equal for all the patients.

"If a patient has fever related to sepsis we have a protocol to treat sepsis, we have a protocol for everything" P8

Nurses mentioned the importance of symptom control and pain management by using protocols and providing comfort.

"If a patient is nauseated we deal with them and give prescribed medication, we are trying to give our best to make patients comfortable, and we have standard care, and we treat pain and assess q4 hours by using the pain scale" N1

The aim of care in the ICU is to provide comfort for the patient and if a patient is dying to provide good end of life care.

"Comfort care is the key elements… at least you should provide comfort care"N6
"Most of the times if no codes the patient will go peacefully" N2

Experiencing language as a barrier
Experiencing language as a barrier includes one category as (1) Ineffective communication

Ineffective communication
Communications is a problem according to the nurses and they express their feelings in the following.

"Arabic language is not our first language" p2 and p3
"Language is a barrier" p3

Some nurses express that if the patient has a tracheostomy the nurse cannot communicate with the patient so they need to communicate with the family and explain everything to them but the language is difficult.

"Some patient have tracheostomy so we communicate with family and language is difficult"p4
"Probably communication is a problem"p6

Nurses experience misunderstanding between non-Arabic speaking nurses and patients and their families during working in the ICU.

"You explain something to the family and somebody else translated so the information can be misunderstood as well"p3

"If I cannot get whatever they are trying to tell me I told them wait a second I do not understand, I am going to find somebody to please help me. If they ask for something and I give something else it will be a problem"p2

Nurses experience of inadequate information is given to the family by a doctor or translators in the ICU.

"Most of time discussion is in Arabic so we do not get the full sense… I do not know if patients and family get enough information… I do not think they get too much involved, how much the patient and family is getting information about the prognosis I have doubt"p6

Nurses cannot tell the truth to the patient's family in the intensive care unit and they express their feeling on that.

"We are not telling the truth to the patient unless to the family …. So the family will not get nervous, some families they get so nervous… We are not allowed to say, here this is the doctors who have authority to tell"p6

Nurses ask for help from translators and Arabic nurses when they face difficulties to explain the patient condition to the family

" We call the translators to get the right message"p2

"I am really not good in Arabic speaking. I usually call ward clerk or any Arabic speaker in unit and we have quite few of them as well"p5

Nurses also mention that not all the patients in the ICU are conscious.

"We are not the best unit in communication because in most of our patients the level of consciousness is not so good"p8

Experiencing language as a support
Experiencing language as a support included two categories (1) family, nurses and patient relationship and (2) Methods of communication.

Family, nurses and patient relationships,
Nurses were concerned of communication which resulted in having strong relations and ties between them and the patient and their family in the ICU.

Family consent and approval for any medical procedure in the ICU is vital according to nurses when they communicate with a patient's family.

" A lot of patients are intubated, after 14 days start aiming to do tracheostomy, we do discussion with family we have to have approval for that…We explain for the family the procedure, and prevent complication of ETT" p7 (Endo Tracheal Tube)

Method of communications
Nurses explained some methods of communications they used to send the right message to the patient and their family while they communicate with the patient and the family in the ICU.
Nurses think of the family and the patient relationship and what is the outcome from this relation when they give care to the patients in the ICU.

" Communication here in Saudi Arabia; they are very close to their families so you need really to address all these issues and information"p5

Nurses used different methods to provide correct information to the patient and family in the ICU.

"We call the translators to get the right message"p2

"We have Arabic translators they help us to translate"p3

Furthermore the nurses use sign language to communicate with patients

"Some they use sign language or interpreters"p2

" We have clue cards with different pictures to show those who are alert"p3

Nurses explain about the relationship and support to family during their work in the ICU.

" If a patient is sick family will be anxious. I cannot blame them because this is their family member and they are close to each other, and it is here different"p5

" After my experiences you always have to put yourself in shoes of patient"p9

" I am getting old information from family since they know more about patient and this is a big help"p5

Nurses point out that social workers provide support for nurses and families when they work in the ICU.

" We use social workers, a lot of family uses patient relation"p1

" I have to know more about my patient not just nurse to the doctor but also with social worker and patient relation we work together and gather the information and then in the outcome we can see this"p2

Arab nurses mention that they help non-Arab speakers when they communicate with patient and family in the ICU.

" As Arab nurse I have no problem with language, on the other side we are helping other staff how to understand patients and to be interpreter between family, patients and staff"p1

Family-patient centered care and support
There are two categories under this theme, one is the family education and the second one is support as holistic care.

Family education
Giving care to critically ill patients in the ICU involves providing support for both a family and a patient and this is an important aspect in the ICU. The support includes family education and covers all aspects regarding a patient's care and providing holistic support. Supporting the family involves the explanation of different procedures, providing information, assurance and providing consultations to the family when they need them.

"We have to sit with the family, reassure them but not false assurance, speaking honestly … We should communicate with them and calm them down" p9

Support as a holistic approach
Communication is very important with a family and in addition to providing them with a comfortable place during the visiting time. Nurses try to absorb the family's reaction especially if the patient is deteriorating and he or she is very sick.

"Having support to the family should be a big consideration, especially here; family should be involved but not only here but everywhere" p5

"You consider yourself a part of the family, let them feel that the patient receives the needed care, let the patient feel comfort because the family is involved in the care of the patient" p7

Nurses mentioned the importance to assure family and calm them down when communicating with the family during delivering some information about the patient.

Nurses point out care satisfaction for patient and family is the aim of their work in the ICU.

" Patient care and family satisfaction is a very important aim in our hospital"p7

Helping a family and a patient to practice their spiritual needs for example, praying or doing supplication of God (Allah). In family- patient centered care; patients will be helped to be free from social isolation during the admission to the ICU.

"If they want to stay with the patient we let them, and if they want to pray or to bring Zamzam water (Holy water) we support, we never say no" p2

Some nurses state that due to culture differences they are not familiar about patient's cultures and this may affect providing spiritual support.

"The culture here in Saudi Arabia is that people are most religious and feel too much relief if you talk to them about this but not all nurses can do this because they do not share the same culture" p8

DISCUSSION
Method
In December 25th, 2010 the authors did nine interviews, eight of them were recorded and no problems occurred during the recording. On the other hand one interviewee refused recording, the interviewer used notes to document her experience and this took a long time to write everything down. The interviewer discussed the documented data with this nurse to confirm her answers to the given questions. Both authors did the interviews in the same time but in separated places by using a conference room in each unit. One author did four interviews with nurses in the medical-surgical ICU. The other author did five interviews in the long term care ICU. It was heavy for authors to do nine interviews in one day but because of the short time they did them. At the beginning of the interviews the authors felt encouraged to do all the interviews, but compared with the end of the day the authors felt tired and using tape recordings saves much effort and time.

In this study there was no dropout. The authors did the data analysis cooperatively and they discussed the analyzed result several times to get the proper themes that reflect the nurses'
experiences. The study's transferability can be assured by using the same criteria of the participants. However, this study is limited to nine nurses and it does not represent all the critical care nurses in Saudi Arabia. It was conducted in one hospital because of the time limit.
Content analysis is a method that was used in this study because it is a good method to analyze personal experiences (Polit and Beck, 1999). This method helped the authors to identify the main themes through breaking down the narrative sentences to meaning units then condensed meaning units and have the main codes and themes according to Graneheim & Lundman, 2004. The authors spent a long time reading and understanding how to do content analysis and checked their process several times with the supervisor. Hence using this method for the first time; it was a challenging for authors. To ensure the credibility of the result a third person (the supervisor of this study) has been involved to check the data analysis and discuss different themes.

RESULT
This study highlights the important aspects of palliative care e.g. symptoms control, communication, team work and family support and this generally agrees with different literature that investigated the same topic in different countries. Six themes were identified and they reflect the nurses' experiences when providing palliative care in the ICU. These themes show how nurses deal with patients and their families during working in the ICU providing palliative care. Nelson and Danis stated in 2001 that palliative care is a part of intensive care and it is appropriate for all critically ill patients who need to have an aggressive treatment to prolong life with quality of care. The participants in this study deal with different diseases including acute and chronic cases. In this study palliative care approaches are similar to those that are documented in literature; according to Becker, 2010 there are keys of palliative care that consist of symptom management, patient and family support, team work with palliative patients, and communication between health care workers, family and patient.

Symptoms management
Symptoms control was an important aspect according to the critical care nurses especially pain control and other symptoms e.g. nausea. In the ICU nurses state that they have different protocols to standardized care to deal with different symptoms, in addition to having competencies that keep them updated to achieve maximum patient care. According to Hansen, Goodell, Dehaven and Smith (2009), nurses in the ICU have skills and experiences in dealing with critically ill patients.

Alshahri and Alkhenaizan (2005), state that terminally ill patients in Saudi hospitals constitute a very important group that deserves qualified and sensitive care, which meets their physical, psychosocial, and spiritual, needs. All the participants in this study report the importance of keeping patients free from pain and help them stay in a comfortable place, and if a patient is dying, someone needs to provide him with good end life care.

According to the ICU nurses in this study the main aim of critical care nursing is to protect patients and their families from suffering and help patients to recover and this seems to be a universal goal for health care workers. Singer, Martin and Kelner (1999) state that critically ill patients in an ICU need to have pain and symptoms control, to relieve suffering for the patient and the family, in addition to enhance a good relationship between patient and their loved ones. Holistic care has been stated by different nurses and this agrees with Alshahri and Alkhenaizan (2005). Terminally ill patients in hospitals in Saudi Arabia constitute a very important group who need qualified and sensitive care that addresses their physical, psychosocial and spiritual needs in terms of a holistic approach.

Team work in the intensive care unit
All participants in the present study emphasise the importance and the need for teamwork when they work in an ICU and find this is required for maximum care for critically ill patients. Prolonged care in an ICU creates a strong relationship between health care workers, patients and families and this agrees with Koesel (2008). The role of the interdisciplinary team when providing palliative care is unique especially when the chronically critically ill patient stays for long time either in an acute ICU or in a long term care unit. Long time care allows health care workers to create a relationship with a patient and build trust with the family. One of the benefits that teamwork can get from each other is exchanging information and knowledge when they work together in the ICU according to the majority of participants.

Nurses explain that they are the first in the team when delivering care to patients, and this is in line with previous findings by Dunn and Mosenthal (2007); the role of palliative care nurses is to assess the needs, plan, implement the action and evaluate the outcome. Nurses describe teamwork as a circle. Nurses are the first line contact with patients, so this is crucial to give complete care and avoid ambiguity of care.

Communication in the ICU
In the present study the majority of nurses are non-Arabic speakers and they found that language is a barrier to communicate with a patient and family. According to (Al Shahri, 2002; and Nixon, 2003), there are many foreign nurses in Saudi Arabia who are non-Arabic speakers and who work in different departments including the ICUs and this could interfere with patient's psychological and spiritual needs due to differences in cultures and beliefs.

In the present study some nurses experience language as a method of support by communication with the patient and the family. This communication can strengthen the relationship and give more support to the patient and family. On the other hand some nurses express the misunderstanding that may happen between non-Arabic speaking nurses, patients and their families during working in the ICU and if nurses want to explain something they need to have a translator to help them to translate the messages. However many times the translated message is misunderstood. Since there are many non-Arabic speakers, some nurses doubt that patients and families get enough explanation about care and support and this is a problem because the language is difficult to understand by nurses.

Family and patient support
Critical care nurses in this study report the importance of supporting the patient's family and provide them with different support spiritually, emotionally and psychologically. A family is an important member in delivering care for critically ill patients in the ICU according to critical care nurses and this gives the same result as Young, Moreau, Ezzat and Gray (1997); that a patient is a member of a large family in Saudi Arabia and the family is responsible for the patient when he/she is sick and they try to protect the patient from harm.

Nurses in the ICU mentioned different ways of supporting family e.g. communication, explanation and providing them with consultation with doctors in a comfortable place even though they do not have enough translators. Some nurses stated that Saudi people are religious and supporting them from this aspect is an effective way, and this agrees with Halligan (2006) that the result indicates the importance of integration of the religion and culture to patient care in Saudi Arabia. Unfortunately in this study the majority of nurses are non-Arabic speaking who are unaware of Saudi culture and they cannot provide spiritual care, which is needed by critically ill patients and their families according to the participants. Spiritual care appears inadequate when nurses mention holistic care and this is contradictory with providing proper palliative care nursing.

CONCLUSION
In conclusion, in this study we tried to explore critical care nurses' experiences when they provide palliative care nursing in an ICU in Saudi Arabia. In general palliative care nursing is applied in the chosen hospital and nurses are aware about applying this care. The authors conclude that communication was a barrier when non-Arabic speaking nurses give care for critically ill patients. Spiritual care is one of the important aspects in palliative care, yet it appears insufficient in this ICU since the majority of nurses cannot communicate in Arabic and provide the needed support.

The authors highlight the importance of communication and therefore they recommend the hospital's management provide adequate numbers of Arabic- speaking nurses and provide more translators in day shifts. Hospital management needs to focus on providing social network like social workers and interpreters where nurses can find strong support to provide palliative care and communicate with a family. A patient and the family's right to have enough information should be considered as a part of working in the ICU. The authors anticipate implementing these recommendations to provide palliative care nursing and promote good quality care for patients and families. Further studies are needed with focus on providing spiritual care for critically ill patients in the ICU. Having some palliative care courses would help nurses to provide better care especially spiritual care which has been found to be inadequate.

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APPENDIX 1

INSTRUMENT
Semi structured interview with participants in English language with a duration of approximately thirty minutes it consists five questions

1- Can you tell me about your experience when providing care for critically ill patients in the ICU? Can you give some examples?

2- What do you think about interdisciplinary team work when providing care in the ICU?

3- How do you experience dealing with patient's symptoms when the patient is critically ill?

4- How do you experience communication with critically ill patients and their families when you provide the care?

5- What is your experience when providing support for patient's family? Can you give an example?

APPENDIX 2

PARTICIPANTS' INFORMATION

RESEARCH TITLE
Nurses' experiences of providing palliative care in an intensive care unit in Saudi Arabia

BACKGROUND
Nurses in the intensive care unit (ICU) have different knowledge, skills and experiences in dealing with critically ill patients. They hold an important position in identifying and assessing patient and family needs with the use of a holistic approach. A holistic approach includes physical, emotional, spiritual and psychosocial aspects of nursing. Many critical care nurses are expert in delivering high standards of care for ill patient. These patients require expert care and support in the intensive care units. Many protocols and policies are available in the ICU in order to meet the patients? needs. In the 1990s, a team of nurses and physicians in Saudi Arabia started thinking about the importance of having a special division of care concerning about palliative care and to be provided for cancer patients. Terminally ill patients in the hospitals in Saudi Arabia constitute a vulnerable group that deserves a qualified care and sensitive care that addresses their physical, psychosocial, and spiritual needs.

AIM
The aim of this study is to explore the nurses? experiences of providing palliative care for critically ill patient in an intensive care unit in Saudi Arabia.

Inquiry concerning participation: you have been chosen through the head nurse of the intensive care unit depending on the criteria of study; that you have experience not less than three years, you speak English and you work as abed side nurse.

How the study will be conducted? The method, which will be used, is an interview and will be carried out by the researchers; there are about five questions, which are studying the participants? experiences. The interview will be will be taken approximately one hour per participant. During the interview a tape recorder will be used after getting permission from the participant. The data will be analyzed manually and transcribed by researchers.

What are the risks from the study?
No risks are predicted from the study.

Dealing with data and confidentiality
The data will be collected through the interview will be tape recorded and transcribed into a document. No names of participants will be asked and no other personal information will be included, even the hospital name will not be documented. After finishing from the study, the researchers will be completely responsible about deleting all the data from the tape recorder and an unauthorized person will not access the recorded data.

Voluntariness
In this study it is optional for the participants to participate or withdraw at any time without giving any reason.

Responsibility
The researchers will be responsible about all the data collection and responsible about deleting all the information after finishing from their study.

Researchers' information
Sharifa Alasiry (nursing student)
Hanan Alshehri (nursing student)
Research supervisor
Jörgen Medin

APPENDIX 3