Contingency Help: The Main Strategy of Iranian Nurses in Dealing With the Family of the End-of-Life Patients

Abstract

Families are struggling with many challenges in the final stages of patient life. It is important to understand what actions nurses do for the family of the end-of-life (EOL) patients. This study aimed to explain the main strategy of nurses’ dealing with the family of the EOL patients. Data were analyzed using conventional content analysis. Semistructured interviews were conducted on 32 nurses from hospitals in Tehran. Nurses used six measures of explaining the bitter reality, effective communication, management of violence, referral, consolation, and reinforcement. “Contingency help” was conceptualized as the main strategy. Nurses through “contingency help” were involved in solving the emotional, physical, financial, and spiritual needs of the family. Nurses will be able to apply the results of this study to the development of care policies for the family of the EOL patients.

Keywords

end of life family help nurse strategy

Introduction

Addressing the needs of families of the end-of-life (EOL) patients, which are referred to as “hidden patients” (Kristjanson & Aoun, 2004), is an important component of care (Khosravan, Mazlom, Abdollahzade, Jamali, & Mansoorian, 2014; Wiegand, Grant, Cheon, & Gergis, 2013). Families experience very difficult emotional conditions because of awareness and observing the imminent death (Baumhover, 2015; Kehl, Kirchhoff, Kramer, & Hovland-Scafe, 2009). These conditions are desperation, helplessness, depression, emotional exhaustion, and hopelessness which interfere with their daily activities (Heidari, Anoosheh, Azad Armaki, & Mohammadi, 2011). Also, spending considerable time, energy, and money places the family in a fragile psychological and emotional state even years after the death of the patient (Sadeghi, Hasanpour, & Heidarzadeh, 2016; Tornøe, Danbolt, Kvigne, & Sørlie, 2015). Nurses are able to reduce the family’s emotional tensions (Baliza et al., 2015; Tornøe, Danbolt, Kvigne, & Sørlie, 2014) and help families transition from this painful situation (Raymond, Lee, & Bloomer, 2017; Wiegand et al., 2013) due to commitment and professional ethical sensitivity (Adams et al., 2014; Fridh, 2014).

In the care of families of the EOL patients, researchers have studied different dimensions of care such as empathy and communication (Hinkle, Bosslet, & Torke, 2015), giving hope (Koenig Kellas, Castle, Johnson, & Cohen, 2017), facilitating meeting (Gruenewald, Gabriel, Rizzo, & Luhrs, 2017), spiritual care (Wall, Engelberg, Gries, Glavan, & Curtis, 2007), involving families in patients care at EOL situations in the intensive care unit (ICU; Cyrol, Frohlich, Piatti, & Imhof, 2018), and facilitating families to decision-making for the good death of dying elderly patients (Johnstone, Hutchinson, Redley, & Rawson, 2016).

But the fact is that most nurses, due to lack of experience and engagement in care routines, have still not been able to enhance their knowledge to the operational aspect of family care (Fernandes Mde & Komessu, 2013; Granero-Molina, 2012). The experiences of nurses in this regard show lacking support for the family of the EOL patients in some clinical fields such as emergent settings (Kongsuwan et al., 2016).

Despite the emphasis on the family in EOL care in the new version of B.S nursing curriculum, but nurses encounter lack of specialized training on the family care in EOL situations; the status of these cares has not been identified in job descriptions, and nurses’ clinical activities in this area are not tangible (Rassouli & Sajjadi, 2016). So that in the last revision of national accreditation standards for hospitals, in the rights of recipients of services, the standards of family care are unclear and the focus is on providing facilities and measures for EOL patients.

On the other hand, the structural and regulatory challenges of hospitals have caused nurses not to have sufficient independence and decision-making power to provide family care (Ghaljeh, Iranmanesh, Nayeri, & Tirgari, 2016). Another disadvantage in this regard is the nursing staff shortage in most health centers, which has imposed a great deal of work on nurses, who are involved in nonnursing work rather than spending more time for the family. Moreover, there is little evidence to show what nurses do in the dealing with these families, and the studies have focused on nurses’ experiences of patient care (Boroujeni, Mohammadi, Oskouie, & Sandberg, 2009; Iranmanesh, Banazadeh, & Forozy, 2016; Iranmanesh, Razban, Nejad, & Ghazanfari, 2014; Valiee, Negarandeh, & Dehghan Nayeri, 2012).

With a thorough understanding of the experiences of nurses in the care of the family of the EOL patients, we can identify the challenges and shortcomings of education and hospitals in this regard. Accordingly, the purpose of the researchers in this study in addition to explaining the care of nurses from these families was to determine whether these care are based on academic knowledge, defined standards, in-service training, or based on the clinical experiences. Therefore, the researchers found it necessary to explain the main strategy of nurses in dealing with the family of the EOL patients.

Methods

Sample

The participants were selected on purposive sampling (Palinkas et al., 2015). Nurses were included in the study with at least 2 years of clinical work and experience of dealing with such families. Male (N = 19) and female (N = 13) nurses were interviewed from 22 hospitals of Tehran (18 educational hospitals and 4 private hospitals) from different clinical units (oncology = 5, ICU = 6, coronary care unit (CCU) = 5, emergency = 7, internal = 6, neonatal ICU = 1, transplantation = 1, and dialysis = 1).

Data Collection

Data were collected by unstructured in-depth interviews from March 2016 to April 2017. Interview question started with a general question: What do you do in dealing with the family of patients at the end of life? and based on the participant responses, the probing questions were arise: What do you do to inform the family? What do you do to calm the family? Can you explain more about your emotional support for the family? you say you should not give false hope. What you mean? and What do you do to control the violent behavior of the family?

The interviews lasted 30 minutes on average. The interviews were conducted by first author in Persian language at the right time and place with the participants’ coordination. The interviews were recorded. After each interview session, it was transcribed verbatim and typed using Microsoft Office Word (ver., 2007).

Data Analysis

Conventional qualitative content analysis was used to discover the meaning and draw the actual results of the collected data (Bengtsson, 2016). An inductive content analysis approach was used because of the limited theories and research literature in the phenomenon of nursing strategies for the families of the EOL patients (Hsieh & Shannon, 2005). According to Graneheim and Lundman, data analysis took place simultaneously with the analysis. Analysis was done manually. With regard to the content and context, words, sentences, and paragraphs were compressed as semantic units and labeled into abstract codes. The text of each interview was read several times to better understand its content. After carefully studying the word by word, line by line, and paragraph to the paragraph of each interview, the researchers annotated the raw codes in the margins and necessary codes were selected which describe all the aspects of the content. The codes were classified to categories and subcategories based on their similarities and differences (Table 1). After each stage of data analysis, all researchers discussed their views in order to reach a full agreement on the extracted codes and categories. Finally, a main category was extracted as a hidden concept of all data (Graneheim & Lundman, 2004; Table 2).

Table 1.

Example of the Analytical Process.

Meaning unit	Code	Subcategory	Category
They realize that we did everything we could. well, when I speak honestly, the family were calmer, they say we did everything we could	Calm the family with verbal communication	Calm	Consolation
At least I try to sympathize, so that they do not feel that I was indifferent to their problem.	Noninduction of nurse’s indifference to the family	Sympathy
I told the family, wait a bit, that is, I tried to prolong the process of family waiting. The family learned to have a little patience. With a little patience, the family then became calm	Trying to prolong the patience process	Bidding to patience

Table 2.

Subcategories, Categories, and Main Category.

Subcategories	Category	Main category
Preparing the family to hear bad news (n^a= 61)	Explaining the bitter reality	Contingency help
Clarifying clinical and therapeutic conditions (n = 97)
Persuading critical conditions (n = 17)
Appropriate division of labor (n = 12)	Communication
Altruistic relationship (n = 16)
Building trust (n = 41)
Violence prevention (n = 37)	Management of violence
Violence control (n = 19)
Referring to financial support (n = 10)	Referral
Referring to emotional counseling (n = 16)
Referring to information sources (n = 12)
Calm (n = 23)	Consolation
Empathy (n = 27)
Sympathy (n = 25)
Comfort (n = 15)
Bidding to patience (n = 12)
Giving hope (n = 26)
Reducing the feelings of guilt (n = 19)
Involving families in patient care (n = 30)	Reinforcement
Facilitating visitation (n = 24)
Helping to boost physical and mental energy (n = 15)
Financial support (n = 19)
Consultation and dialogue (n = 17)
Handling the spiritual/religious needs (n = 17)

^an: The frequency of codes for each subcategories.

Ethics

Data rigor was provided by allocating sufficient time for each interview, prolonged engagement with the data and the use of feedback from all members of the research team and experts. Data transferability was through maximum variation sampling (Elo et al., 2014). Also, the credibility of the data was confirmed using the member check method (Birt, Scott, Cavers, Campbell, & Walter, 2016). This study was approved by the Ethics Committee of Tarbiat Modares University (Code of ethics: D 52/9109). Informed consent was obtained from participants. Participants were informed verbally of the aim of the study, voluntary participation, anonymity, confidentiality of information, and the right to withdraw from the research at the time of the request.

Results

The results of the study showed that the most of clinical nurses used the “contingency help” strategy in dealing with the family of the EOL patients. This strategy consists of 25 subcategories which were implemented through “explaining the bitter reality,” “effective communication,” “management of violence,” “referral,” “consolation,” and “reinforcement” (Table 2).

Explaining the Bitter Reality

Nurses used a set of techniques in explaining the bitter reality to the family, while most of them considered it unpleasant and stressful which need to have the knowledge and courage. In this regard, the nurses provide different ways to inform the family about the likelihood of death, the futility of life-saving efforts, and the deterioration of the patient’s conditioned. The subcategories of “explaining the bitter reality” include “preparing the family to hear bad news,” “clarifying clinical and therapeutic conditions,” and “persuading critical conditions.” In “preparing the family to hear bad news,” nurses used “setup for bad news,” “no annoying words,” “postpone delivering bad news to the final moments of life,” “attention to the physical and emotional readiness of the family,” and “avoiding explicitly stating the bad news.” Nurse 12 (male, 34, PhD, oncology) quotes informing families of bad news in gradual stages:

I let the family become familiar with the environment, to reduce family anxiety, and then gradually I began to tell them other things; it’s a setup for bad news. For example, I told the family that the patient’s creatinine is good today; to make them ready. We had a patient with advanced cancer; at first I did not inform the family about metastasis; I said good things; for example, fortunately, the condition of the patient’s heart is good.

The nurses clarified the patient’s clinical conditions to the family with understandable examples. In this regard, Nurse 6 (female, 34, MSN, emergency department) says:

I told the mother that, her baby’s heart beats reached 50. Whenever we inject the drug, she does not respond; it is possible that heart stop.

To “persuading critical conditions,” the nurses were well-behaved with family and asked for help from the family member with the better mental status. Nurse 8 (female, 32, MSN, pediatric oncology department) says:

You are a nurse yourself; you know that neuroblastoma has a recurrence of 100%, don’t bother yourself with these vain thoughts, If I had a different doctor, my child would respond to treatment.

Effective Communication

Nurses used different techniques to communicate effectively with these families. “Effective communicating” subcategories involve “appropriate division of labor,” “altruistic relationship,” and “building trust.” Nurse 15 (female, 46, MSN, oncology) quotes the appropriate division of labor:

In the case method, I was in close contact with the family; but in this method, the family is much more dependent on the nurse. If the nurse has gone for a day-off, more emotional blow comes to them. But I think it’s better to be functional, in rotational shift work, it does not hurt the family.

Also, Nurse 9 (female, 34, MSN, pediatric oncology) quotes:

One day I was not a nurse for the patient. The family asked me anxiously: you are not here today? Is your working hours finished? Are you leaving? It seems that the family had become emotionally dependent on me.

Friendly communication, kindness, gentle behavior, no inducing the sense of being indifferent to the family, and urgent treatment of the family requests were adopted by the nurses in an altruistic relationship. Nurse 22 (male, 33, BSN, CCU) states:

Because I have a similar experience in communicating with such families, I tried to behave with kindness and calm, Anyway, I met a very agitated family.

Also, Nurse 18 (male, 32, BSN, general ICU) narrates this:

To communicate better with this family, I tried to show my kindness and friendship to the family. I told the family as a nurse: I am a supporter of you; that is the problem you are talking about, I’m not against you; let me put your mind at ease; I’m with you, I’m here to take care of you.

Nurses used these techniques to foster trust in the family: reassure the family of being up to date, having knowledge of all aspects of the patient, permanent presence at the bedside, maximum effort to save the patient, and reasonable response to the family preferably with the presence of a physician. Nurse 16 (male, 34, MSN, internal department) says of “building trust” in the family:

I remember I connected the patient’s serum. I injected the drugs; the patient became a little relaxed. Then the family told me that in very sensitive circumstances when something is to be done, you can help the patient. And after that, I remember every time there was a problem, the family contacted me directly.

Management of Violence

The subcategories of “management of violence” include “Nonsystematic violence prevention” and “impromptu violence control.” The nurses have experienced violent behaviors in the family as verbal violence, damage to objects, or a quarrel with the personnel. Nurses prevented the escalation of violence by avoiding reciprocity with the family and urgently addressing their needs. Nurse 3 (male, 32, MSN, of cardiac ICU) says of his experience:

We did not oppose him. The family wanted to beat us. We did not allow this and we met them halfway. We let them see the patient.

On the other hand, the nurses considered empathy with a violent family as a source of more excitement. So, they were less involved with the violent family or they showed themselves engaged in other activities. Nurse 25 (female, 33, MSN, ICU head nurse) says in this regard:

We tried to avoid the family. We informed the security guard, so as to not deal directly with the family.

Referral

Nurses referred the family to appropriate sources of information, social worker for financial support, and psychologists or psychiatrists for psychoemotional counseling. In this way, the “referral” category includes subcategories of “referring families to information sources,” “referring to financial support,” and “referring to emotional counseling.” Nurse 7 (female, 37, BSN, oncology department) states about referring families for information sources:

Families sometimes have some issues, so we might not have a very large amount of information from the patient, and I try to refer them to their doctor who could have more accurate information about their patient.

Nurse 10 (female, 36, internal department) quotes about referring to financial support:

A family told me: I’ve spent a lot of money on my patient that I do not really have any more to buy this chemotherapy drug. Then I referred the family to social work; I told the family that they could help you.

Consolation

Most nurses quoted activities indicating their efforts to consolation of the bereaved family. The subcategories of “consolation” include “calm,” “sympathy,” “empathy,” “comfort,” “bidding to patience,” “giving hope,” and “reducing the feelings of guilt.” Nurses consoled the family by giving the right to the family, avoiding arrogant words, honest verbal communication, and creating a good picture of the patient’s death for family with the phrases like “the patient gets rid of suffering,” “The patient did not suffer a lot of pain” and “peaceful death.” Nurse 11 (female, 33, BSN, pediatric oncology) says of her experience:

I embraced the mother, I said, I cannot stand your suffering and I can’t even imagine myself in your situation, I’ve never been in a situation where my patient is not expected to live longer than a month. When I spoke honestly, she became a little calmer and she said: you did everything you could.

Nurse 6 (female, 32, BSN, emergency department) says of suggesting the family to have patience:

I told the family, wait a little; that is, I tried to prolong the process of family waiting. The family learned to have a little patience. With a little patience, the family then became calm.

Nurses’ statements show that they are trying to give hope to the families and avoid giving false hope. Nurses said that giving false hope leads to depression and emotional destruction of the family. In trying to give hope, nurses provided the inspirational hope quotes to the families, such as healing, God’s mercy, and “hold your hope until last moments.” Also, they prevented family confusion between hope and despair by coordinating with other colleagues how to talk with the family. Nurse 9 (female, 34, MSN, pediatric oncology) says:

I don’t want to give you so much hope that this will happen to your child, that you’ll be depressed later.

Also, Nurse 23 (male, BSN, surgical ICU) quotes his experience in giving hope to the family:

I spoke to the family that you are saying in slang: “Neither fish nor fowl.” I did not give him a false hope, I did not say him “you can rest assured that the patient is ok.” I said the family: you did everything you could, keep hope alive until last moment.

In this study, the nurses were doing a variety of actions to create family realism and reduce their sense of guilt, such as gentle behavior with the family, implicit agreement to the family requests, and emphasizing the family of the appropriateness of his or her decisions for the patient. Nurse 1 (male, 45, BSN, ICU head nurse) states:

Although I found the violent behavior of the family was due to their sense of guilt because of neglect of his father and now, he was more Catholic than the Pope. I had to keep my calm even more. My job requires this.

Reinforcement

In this study, nurses strengthen the fragile family emotionally, physically, financially, and spiritually. In other words, the nurses revitalized the family of EOL patients with some techniques. The subcategories of “reinforcement” consist of “involving families in patient care,” “facilitating visitation,” “helping to boost physical and mental energy,” “financial support,” “consultation and dialogue,” and “handling the spiritual/religious needs.” Nurse 17 (female, 32, BSN, neonatal ICU) says her experience of family participation in care:

When the mother wanted to embrace her baby for the first time, to make it easier, I gave her some training, to find a good sense to her baby.

Nurses facilitate patient visits to the families such as allowing families to visit the patient at different times, giving more time for patient visits, providing last visits for possible goodbye of the patient, and allowing the presence of a family member in the final moments of patient’s life.

Nurse 30 (female, 37, BSN, ICU head nurse) says of facilitating visitation:

I am not rigid for visiting the patient; that must be at certain hours. I told them they could come and see the mother whenever they wanted because the patient is dying; I have made it easy for the family. Also, I informed the hospital security guard in this regard to meet them halfway.

Nurses helped improve the physical strength of the family by family education for rotational presence at the bedside, going home to rest, and providing rest facilities such as a chair or, if possible, an empty bed. Also, to strengthen the spirit of the family, they supported the families emotionally by timely addressing the family’s needs, familiarizing them with families with similar conditions, doing proper clinical practices, holding a birthday party for the patient, and taking memento photos with the family. In this regard, Nurse 5 (female, 36, BSN, oncology department) says:

I taught the family to help each other, for an hour or 24 hours, so that nobody gets tired. I told them: take a shower, eat a meal, take a break and come back.

Also, nurses facilitated financial support to reduce the negative effects of treatment costs on the family’s emotional health. Nurse 27 (female, 34, BSN, pediatric oncology) expresses her experience in helping a mother with a financial problem:

I told her: The money’s not coming out of my pocket, there are charitable people who donate money here for families like you. Then I talked so much with her, she accepted. The cost of chemotherapy drugs was provided free of charge. The day of the discharge the cost of treatment was a hundred thousand Tomans instead of one million. The family did not notice our help, that is, we tried to preserve family dignity.

The nurses understood that the family needs to express their thoughts and feelings for emotional evacuation, so they provided consultation and dialogue with family as much as possible in informal counseling often in the hours of the patient’s visit. Nurses took steps to provide family dialogue, such as speaking with respect and kindness, creating a quiet environment to talk, talking with the family as a trusted person, and allowing the family to ask any questions to find the pattern of talking with the family. Nurse 13 (male, 33, MSN, transplantation department) quotes:

We have prepared a room. It is quieter than the ward. The counseling room is somewhat separate from the department; isolated from the therapeutic space. If the family needs counseling, I use this room. Then, I encourage the family to ask me questions. The quiet atmosphere makes the family calm.

Nurses recommended families to trust in God, reading the Quran (Chapters and certain verses to death and dying. For example: Surah Yaseen, Ayatul Kursi: Verse 255 of Surah al-Baqarah in holy Qur’an), praying or giving charity, and providing the religious conditions requested by the family (such as turning the dying patient toward the Qiblah, removing extra sheets or blankets from the patient’s body, putting the holy Quran by head of the patient, and providing conditions to meet with a clergy). Also, nurses support the family spiritually by saying statements such “God knows the lifetime.” Nurse 4 (male, 33, BSN, CCU) states:

I said the family we did everything we could, to make the patient get better, give charity to the needy, read the Quran for him.

Discussion

The study explained nursing strategies in dealing with the family of the EOL patients. These strategies were conceptualized as contingency help. Helping, as an integral part of clinical nursing, refers to any type of action that empowers an individual to overcome what he encounters with his ability to act appropriately in relation to his or her position (Carter, 2009). As it is seen in the findings, nurses as helper despite the lack of defined job description, intervene in impromptu, unorganized, individual, and situational in dealing with the families of the EOL patients. The results of this study show the nature of nurses’ help from the family of EOL patients is contingent. In a specific context, such as caring for a family of EOL patient, contingency means nurse’s analysis of the control of the possible conditions of the family. The quotes from nurses indicate that they have no specific planning and operational analysis for environmental conditions and accurate monitoring of outcomes in EOL situations; in other words, the nurses act without initial targeting for their help. Therefore, in the current situation of clinical nursing, helping the family is based on moral and human values of the nurses (i.e., compassion, kindness, and altruism) and the experiences they have learned during their professional life. In this way, the measures of “explaining the bitter reality,” “effective communication,” “referral,” “management of violence,” “consolation,” and “reinforcement” refer to the “contingency help.” In EOL situations, delivering bad news is inevitable for the nurses. Nurses in explaining the bitter reality adopted the relevant strategies based on the cultural conditions of Iranian families, in particular, nondisclosure policy for bad news (Montazeri, Tavoli, Mohagheghi, Roshan, & Tavoli, 2009; Salem & Salem, 2013). This strategy is the opposite of the approach of “truth telling” for bad news in EOL care in the United States (Searight & Gafford, 2005). However, the policy of Iranian nurses in explaining the bitter reality does not mean concealment in telling the truth, but this may be related to nurses’ concerns about the possibility of psychological harm to the family after disclosure of serious illness or imminent death of the patient. In this regard, a study show nurses often believe the disclosure of bad news is a source of unnecessary tensions and loss of family hope (Ayers, Vydelingum, & Arber, 2017). Nurses had experienced the setup for breaking bad news through gradual and orderly manner (saying bad news piece by piece, good news, and then bad news). It seems this technique would help the family to better handle the situation. Thus, through this strategy, the nurses were careful not to overwhelm the family with too much tragedy at once. In any case, the nurses considered the physical and emotional readiness of the family while providing them about the patient’s clinical status. In this respect, telling the truth and avoiding entering the false, deceptive, and inaccurate information are considered a virtue in the ethical approach to EOL care (Pergert & Lützén, 2012). The findings of this study suggest that nurses clarified the patient’s clinical conditions in nontechnical language based on the level of knowledge and perception of the family. Along with this finding, a study has found that nurse as information broker in EOL care must give information to family members about equipment, the patient’s condition, and diagnosis; medical information into lay terms; and explaining, educating, and clarifying meanings of terms (Adams, Bailey, Anderson, & Docherty, 2011).

The strong communication between the nurse and the family is one of the EOL care needs. The findings of this study indicated that nurses were trying to communicate effectively with the family through appropriate division of labor, altruism, and building trust. In this regard, studies also emphasize that nurses with good and honest communication skills (Kirchhoff & Faas, 2007; Smith, 2014) are able to support physical, psychological, social, and spiritual life for the family of EOL patients (Mullen, Reynolds, & Larson, 2015; Schmidt & Azoulay, 2012). Regarding the Iranian family culture for more trust in physician, nurses used building trust techniques such as convergence with the physician in providing information and showing their skills and clinical expertise to the family. In this study, in spite of the expressed problems for the division of labor in the case method, it is preferable to a functional approach because human communications are emphasized in care both for the patient and for the family members. In consolation of family, nurses referred to techniques such as calm, empathy, sympathy, and comforting. These terms are often used interchangeably in the health-care literature; at first glance, there is no clear distinction between these techniques (Sinclair et al., 2017). However, nurses’ statements directly or indirectly show different, operational aspects in this regard. For example, “compassion with bereaved family” was sympathy or “I understand your hard conditions” interpreted as empathy. Also, nurses provided family consolation by strengthening the ethical skills (i.e., bidding to have patience and trust in God). This strategy is in line with the views of the Quran and the Prophet of Islam, who always bade humans to have patience in life’s difficulties (Ali, 2011). From the data analysis, it emerged that the nurses maintain hope in the family when the patient is close to death. A study found that the nurses could help the grieving family find hope as a key element for success in therapeutic encounters (Thirsk & Moules, 2013). Our findings show the nurses in a prudent approach, while trying to give hope, try to avoid giving false hope to the family. This strategy suggests the nurses’ attention to cultural, religious, and moral values of the families to maintain hope. In this regard, studies show nurses can help the families overcome their painful situation by giving realistic hope (Öhlén et al., 2007) and changing the family’s view of false hope into aspects of hope such as good death or no patient suffering (Koenig Kellas et al., 2017). In this study, nurses quote about families with feelings of guilt. The family felt guilty due to inadequate care, negligence or abandonment of the patient, increasing the suffering of a patient, and insist on the continuation of life-sustaining. Similarly, studies suggest causes for feelings of guilt in the family such as regret of medical decisions or observation of nonrelief of symptoms in the patient (Harrop, Byrne, & Nelson, 2014; Stajduhar, Martin, & Cairns, 2010). The nurses tried to induce positive thinking and realism to remove this annoying feeling from family. In this regard, it is emphasized that nurses should try to make a positive perception of this painful experience in the family with feelings of guilt (Harrop, Morgan, Byrne, & Nelson, 2016). Confirming family’s decisions in EOL situations was another nursing technique in dealing with feelings of guilt in the family. In this regard, a study showed nurses with confirming the appropriateness of family’s decisions can help to reduce feelings of guilt in the family by inducing a sense of having fulfillment in duties and responsibilities (Andershed & Harstade, 2007).

As seen in the findings, nurses reinforced the families with counseling and dialogue. Dialogue is considered family support in EOL situations (Vanden Bergh & Wild, 2015). Nurses conducted dialogue by creating an environment of trust and confidentiality. Techniques in the findings imply nurses are trying to enter the world of the family to share in their thoughts, questions, concerns, pain, and pleasures. These actions are in line with the open dialogue to encourage the family to speak the unspeakable about death and dying (Imber-Black, 2014) and to express their priorities, needs, and desires (Öhlén et al., 2007). In this study, involving the members of the family in some aspects of patient’s care was a way to boost family’s spirit. This behavior is consistent with studies that show the nurses’ perception of the existence of strong emotional bond between members of Iranian families and the expectations for a possible contribution to patient care (Iranmanesh et al., 2016; Mortazavi, Peyrovi, & Joolaee, 2015). Nurses through such an action that was different from the biomedical paradigm (professional distance, controlled communication, and giving high priority to regulations) helped the family’s emotional health by enhancing the sense of usefulness (Van Keer, Deschepper, Francke, Huyghens, & Bilsen, 2015). In this study, nurses tried to provide more facilities for patient visits for the families. In our study, nurses reinforced family’s spirits with facilitating visits which allowed the family to touch the process of treatment, rescue efforts, and get closer to the patient.

Excessive family presence in the bedside of a dying patient is always exhausting. In this study, nurses helped the families to save mental and physical energy. In this regard, Williams, Lewis, Burgio, & Goode (2012) showed that providing physical comfort for the family is one of the nurses’ support in EOL care (Williams, Lewis, Burgio, & Goode, 2012). The results of this study indicated that nurses encouraged families through the presence of rotation on the bed to reduce their physical and emotional depreciation. In this regard, Lichtenthal (2008) state a family member may experience unspoken frustration and emotional stress because of an unfair division of labor in the care of the patient, increased care burden and disappointment with the support of other family members (Lichtenthal & Kissane, 2008). The results of this study showed that nurses help the spiritual–religious needs of the family. For example, bidding the family to trust in the Lord and encouraging reading the Quran. Studies show supporting the spiritual–religious needs as an important part of healing (Milstein, 2005) in family health care (Ho, Nguyen, Lopes, Ezeji-Okoye, & Kuschner, 2018) strengthens the nurse’s human communication with the family (Bjarnason, 2009). The results of this study are consistent with a study that show respectful support for the family’s spiritual expectations (Iranmanesh, Hosseini, & Esmaili, 2011). Finding show nurses encourage the family to recite as much from the holy Qur’an as possible as the rules related to a dying person in Islam. Putting the dying patients in direction toward the holy Ka’bah was another action by nurses. Fernandes Mde & Komessu (2013) expresses spiritual help consistent with the family beliefs is a behavior that reflects the love and understanding of the emotional suffering of the family (Fernandes Mde & Komessu, 2013).

The results of this study indicate that Iranian nurses have the flexibility, personal experiences, compassion, sensitivity, and attention to family support. However, these measures often reflect the helping role of nurses, which, in the absence of professional nursing education in the field of EOL care, does not provide a strong guarantee for comprehensive, managed, and continuous care for the families. In addition, the other roles proposed by nurses such as family advocacy in EOL care (Blazeviciene, Newland, Civinskiene, & Beckstrand, 2017) will not be realized. The limitation of this study is that only the experiences of nurses in clinical setting have been studied.

The results of this study indicate the Iranian nurses in dealing with the families of the EOL patients act without specific planning and policy, and it was based on their personal skills and experiences. When nurses help the family of the EOLs, a common bond between the nurse and the family arises that forms the cornerstone of professional nursing practice. The contingency of nursing interventions would make a worthwhile contribution to families. This approach can be useful because it consider the individual, cultural, and situational differences of the families of the EOL patients. The fact that nurses without care policies have taken care of the families is helpful, but this strategy is inadequate. Organizational support and protocol-based interventions for clinical nurses are essential for effective family health care. It is suggested that nursing managers and nursing education planners use the findings of this qualitative research to better meet the needs and rights of the families in the nursing education accreditation programs.

Footnotes

Acknowledgments

This manuscript is a part of PhD nursing thesis by Reza Norouzadeh, sponsored by Tarbiat Modares University (Code of ethics: D 52/9109). The authors appreciate the nurses and hospital staff for facilitating interviews.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Reza Norouzadeh is PhD student of nursing, Department of Nursing, faculty of Medical Sciences, Tarbiat Modares University. He is a lecturer of nursing. He has qualitative and quantitative researches in end of life care, coronary care, elderly and clinical education.

Monireh Anoosheh, associated professor of health education in faculty of Medical Sciences Tarbiat Modares University. She has teaching and researches in family and women health.

Fazlollah Ahmadi is a professor of nursing, faculty member of Nursing Department, Faculty of Medical Sciences, Tarbiat Modares University. His research interest: Qualitative Research (Grounded Theory, Action Research) Cardiovascular Nursing, Chronic Care, Quality of Life and Psychometric Properties.

References

Adams

J. A.

Anderson

R. A.

Docherty

S. L.

Tulsky

J. A.

Steinhauser

K. E.

Bailey

D. E.

(2014). Nursing strategies to support family members of ICU patients at high risk of dying. Heart & Lung: The Journal of Acute and Critical Care, 43(5), 406–415.

Adams

J. A.

Bailey

D. E.

Jr. Anderson

R. A.

Docherty

S. L.

(2011). Nursing roles and strategies in end-of-life decision making in acute care: A systematic review of the literature. Nursing Research and Practice, 2011, 527834–527815.

Ali

M. M.

(2011). Holy Quran: Ahmadiyya Anjuman Ishaat Islam Lahore USA. USA: Ahmadiyya Anjuman Ishaat Islam Lahore, USA.

Andershed

Harstade

C. W.

(2007). Next of kin’s feelings of guilt and shame in end-of-life care. Contemporary Nurse, 27(1), 61–72.

Ayers

N. E.

Vydelingum

Arber

(2017). An ethnography of managing emotions when talking about life-threatening illness. International Nursing Review, 64(4), 486–493.

Baliza

M. F.

Bousso

R. S.

Poles

Santos

M. R. D.

Silva

Paganini

M. C.

(2015). Factors influencing intensive care units nurses in end-of-life decisions. Revista da Escola de Enfermagem da USP, 49(4), 0572–0579.

Baumhover

N. C.

(2015). The process of death imminence awareness by family members of patients in adult critical care. Dimensions of Critical Care Nursing, 34(3), 149–160.

Bengtsson

(2016). How to plan and perform a qualitative study using content analysis. NursingPlus Open, 2, 8–14.

Birt

Scott

Cavers

Campbell

Walter

(2016). Member checking: A tool to enhance trustworthiness or merely a nod to validation? Qualitative Health Research, 26(13), 1802–1811.

10.

Bjarnason

(2009). Nursing, religiosity, and end-of-life care: Interconnections and implications. Nursing Clinics of North America, 44(4), 517–525.

11.

Blazeviciene

Newland

J. A.

Civinskiene

Beckstrand

R. L.

(2017). Oncology nurses’ perceptions of obstacles and role at the end-of-life care: Cross sectional survey. BMC Palliative Care, 16(1), 74.

12.

Boroujeni

A. Z.

Mohammadi

Oskouie

S. F. H.

Sandberg

(2009). Iranian nurses’ preparation for loss: Finding a balance in end‐of‐life care. Journal of Clinical Nursing, 18(16), 2329–2336.

13.

Carter

M. A.

(2009). Trust, power, and vulnerability: A discourse on helping in nursing. Nursing Clinics, 44(4), 393–405.

14.

Cyrol

Frohlich

M. R.

Piatti

Imhof

(2018). [End-of-life care in intensive care units: Nursing strategies of family involvement at the end of life]. Pflege, 31(3), 135–143.

15.

Elo

Kääriäinen

Kanste

Pölkki

Utriainen

Kyngäs

(2014). Qualitative content analysis: A focus on trustworthiness. Sage Open, 4(1), 2158244014522633.

16.

Fernandes Mde

Komessu

J. H.

(2013). [Nurses’ challenges in view of the pain and suffering of families of terminal patients]. Revista da Escola de Enfermagem da USP, 47(1), 250–257.

17.

Fridh

(2014). Caring for the dying patient in the ICU—The past, the present and the future. Intensive and Critical Care Nursing, 30(6), 306–311.

18.

Ghaljeh

Iranmanesh

Nayeri

N. D.

Tirgari

(2016). Organizational challenges: A major obstacle at end of life care in Iran. British Journal of Medicine and Medical Research, 16(7), 1–12.

19.

Graneheim

U. H.

Lundman

(2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.

20.

Granero-Molina

(2012). End-of-life care: A paradigm of nursing knowledge. Nurs Care. DOI:10.4172/2167-1168.1000e113

21.

Gruenewald

D. A.

Gabriel

Rizzo

Luhrs

C. A.

(2017). Improving family meetings in intensive care units: A quality improvement curriculum. American Journal of Critical Care, 26(4), 303–310.

22.

Harrop

Byrne

Nelson

(2014). “ It’s alright to ask for help”: Findings from a qualitative study exploring the information and support needs of family carers at the end of life. BMC Palliative Care, 13(1), 22.

23.

Harrop

Morgan

Byrne

Nelson

(2016). “ It still haunts me whether we did the right thing”: A qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers. BMC Palliative Care, 15(1), 92.

24.

Heidari

M. R.

Anoosheh

Azad Armaki

Mohammadi

(2011). Nurses experiences in the care of end stage patients. Iranian Journal of Medical Ethics and History of Medicine, 4(6), 75–86.

25.

Hinkle

L. J.

Bosslet

G. T.

Torke

A. M.

(2015). Factors associated with family satisfaction with end-of-life care in the ICU: A systematic review. CHEST Journal, 147(1), 82–93.

26.

J. Q.

Nguyen

C. D.

Lopes

Ezeji-Okoye

S. C.

Kuschner

W. G.

(2018). Spiritual care in the intensive care unit: A narrative review. Journal of Intensive Care Medicine, 33(5), 279–287

27.

Hsieh

H.-F.

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288.

28.

Imber-Black

(2014). Will talking about it make it worse? Facilitating family conversations in the context of chronic and life-shortening illness. Journal of Family Nursing, 20(2), 151–163.

29.

Iranmanesh

Banazadeh

Forozy

M. A.

(2016). Nursing staff’s perception of barriers in providing end-of-life care to terminally ill pediatric patients in Southeast Iran. American Journal of Hospice and Palliative Medicine®, 33(2), 115–123.

30.

Iranmanesh

Hosseini

Esmaili

(2011). Evaluating the “good death” concept from Iranian bereaved family members’ perspective. Journal of Supportive Oncology, 9(2), 59–63.

31.

Iranmanesh

Razban

Nejad

A. T.

Ghazanfari

(2014). Nurses’ professional autonomy and attitudes toward caring for dying patients in South-East Iran. International Journal of Palliative Nursing, 20(6), 294–300.

32.

Johnstone

M. J.

Hutchinson

A. M.

Redley

Rawson

(2016). Nursing roles and strategies in end-of-life decision making concerning elderly immigrants admitted to acute care hospitals: An Australian study. Journal of Transcultural Nursing, 27(5), 471–479.

33.

Kehl

K. A.

Kirchhoff

K. T.

Kramer

B. J.

Hovland-Scafe

(2009). Challenges facing families at the end of life in three settings. Journal of Social Work in End-of-Life Palliative Care, 5, 144–168.

34.

Khosravan

Mazlom

Abdollahzade

Jamali

Mansoorian

M. R.

(2014). Family participation in the nursing care of the hospitalized patients. Iranian Red Crescent Medical Journal, 16(1), e12686.

35.

Kirchhoff

K. T.

Faas

A. I.

(2007). Family support at end of life. AACN Advanced Critical Care, 18(4), 426–435.

36.

Koenig Kellas

Castle

K. M.

Johnson

Cohen

M. Z.

(2017). Communicatively constructing the bright and dark sides of hope: Family caregivers’ experiences during end of life cancer care. Behavioral Sciences, 7(2), 33.

37.

Kongsuwan

Matchim

Nilmanat

Locsin

R. C.

Tanioka

Yasuhara

(2016). Lived experience of caring for dying patients in emergency room. International Nursing Review, 63(1), 132–138.

38.

Kristjanson

L. J.

Aoun

(2004). Palliative care for families: Remembering the hidden patients. The Canadian Journal of Psychiatry, 49(6), 359–365.

39.

Lichtenthal

W. G.

Kissane

D. W.

(2008). The management of family conflict in palliative care. Progress in Palliative Care, 16(1), 39–45.

40.

Milstein

(2005). A paradigm of integrative care: Healing with curing throughout life, “being with” and “doing to.” Journal of Perinatology, 25(9), 563–568.

41.

Montazeri

Tavoli

Mohagheghi

M. A.

Roshan

Tavoli

(2009). Disclosure of cancer diagnosis and quality of life in cancer patients: Should it be the same everywhere? BMC Cancer, 9(1), 39.

42.

Mortazavi

Peyrovi

Joolaee

(2015). How do family caregivers of older people give up caregiving? International Journal of Community Based Nursing and Midwifery, 3(3), 187.

43.

Mullen

J. E.

Reynolds

M. R.

Larson

J. S.

(2015). Caring for pediatric patients’ families at the child’s end of life. Critical Care Nurse, 35(6), 46–56.

44.

Öhlén

Andershed

Berg

Frid

Palm

C. A.

Ternestedt

B. M.

Segesten

(2007). Relatives in end‐of‐life care—Part 2: A theory for enabling safety. Journal of Clinical Nursing, 16(2), 382–390.

45.

Palinkas

L. A.

Horwitz

S. M.

Green

C. A.

Wisdom

J. P.

Duan

Hoagwood

(2015). Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration and Policy in Mental Health and Mental Health Services Research, 42(5), 533–544.

46.

Pergert

Lützén

(2012). Balancing truth-telling in the preservation of hope: A relational ethics approach. Nursing Ethics, 19(1), 21–29.

47.

Rassouli, M., & Sajjadi, M. (2016). Palliative care in Iran: Moving toward the development of palliative care for cancer. American Journal of Hospice and Palliative Medicine®, 33(3), 240--244.

48.

Raymond

Lee

S. F.

Bloomer

M. J.

(2017). Understanding the bereavement care roles of nurses within acute care: A systematic review. Journal of Clinical Nursing, 26(13-14), 1787–1800.

49.

Sadeghi

Hasanpour

Heidarzadeh

(2016). Information and communication needs of parents in infant end-of-life: A qualitative study. Iranian Red Crescent Medical Journal, 18(6), e25665.

50.

Salem

A.-F.

(2013). Breaking bad news: Current prospective and practical guideline for Muslim countries. Journal of Cancer Education, 28(4), 790–794.

51.

Schmidt

Azoulay

(2012). Having a loved one in the ICU: The forgotten family. Current Opinion Critical Care, 18(5), 540–547.

52.

Searight

H. R.

Gafford

(2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3), 515–522.

53.

Sinclair

Beamer

Hack

T. F.

McClement

Raffin Bouchal

Chochinov

H. M.

Hagen

N. A.

(2017). Sympathy, empathy, and compassion: A grounded theory study of palliative care patients’ understandings, experiences, and preferences. Palliative Medicine, 31(5), 437–447.

54.

Smith

(2014). Giving hope to families in palliative care and implications for practice. Nursing Children and Young People, 26(5), 21.

55.

Stajduhar

K. I.

Martin

Cairns

(2010). What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients. Palliative & Support Care, 8(3), 277–289.

56.

Thirsk

L. M.

Moules

N. J.

(2013). “ I can just be me”: Advanced practice nursing with families experiencing grief. Journal of Family Nursing, 19(1), 74–98.

57.

Tornøe

K. A.

Danbolt

L. J.

Kvigne

Sørlie

(2014). The power of consoling presence-hospice nurses’ lived experience with spiritual and existential care for the dying. BMC Nursing, 13(1), 25.

58.

Tornøe

K. A.

Danbolt

L. J.

Kvigne

Sørlie

(2015). The challenge of consolation: Nurses’ experiences with spiritual and existential care for the dying-a phenomenological hermeneutical study. BMC Nursing, 14(1), 62.

59.

Valiee

Negarandeh

Dehghan Nayeri

(2012). Exploration of Iranian intensive care nurses’ experience of end-of-life care: A qualitative study. Nursing in Critical Care, 17(6), 309–315.

60.

Vanden Bergh

Wild

D. M.

(2015). [Conversations about end-of-life in the intensive care unit]. Anasthesiologie, Intensivmedizin, Notfallmedizin, Schmerztherapie: AINS, 50(1), 56–63.

61.

Van Keer

R.-L.

Deschepper

Francke

A. L.

Huyghens

Bilsen

(2015). Conflicts between healthcare professionals and families of a multi-ethnic patient population during critical care: An ethnographic study. Critical Care, 19(1), 441.

62.

Wall

R. J.

Engelberg

R. A.

Gries

C. J.

Glavan

Curtis

J. R.

(2007). Spiritual care of families in the intensive care unit. Critical Care Medicine, 35(4), 1084–1090.

63.

Wiegand

D. L.

Grant

M. S.

Cheon

Gergis

M. A.

(2013). Family-centered end-of-life care in the ICU. Journal of Gerontological Nursing, 39(8), 60–68.

64.

Williams

B. R.

Lewis

D. R.

Burgio

K. L.

Goode

P. S.

(2012). “ Wrapped in their arms”: Next-of-kin’s perceptions of how hospital nursing staff support family presence before, during, and after the death of a loved one. Journal of Hospice & Palliative Nursing, 14(8), 541–550.