Striving for a balance between leading and following the patient and family – nurses’ strategies to facilitate the transition from life-prolonging care to palliative care: an interview study

Palliative care (PC) has changed during the last decades and today the patient and family are involved in the PC process in a much more direct way compared with previously. The patient’s role has been strengthened, as the health care team are obliged to inform patients of their prognosis, be open for a discussion about any change in goals and plan the care in line with the individual patient’s wishes [1]. The end of a person’s life is often characterized by physiological, social and existential changes due to loss of roles and functions that effect self-image [2, 3, 4], often occurring in parallel with physical suffering [5]. This situation is challenging, and the patient and their family need to be supported. However, knowledge of how to support the patient and family in this specific phase is lacking, and this needs to be further explored.

The transition to PC is associated with the experience of leaving a predictable and entering a new, unpredictable situation [6]. Family caregivers describe the transition to PC as bringing a constant awareness of death, which increases in times of deterioration of symptoms or when waiting for test results or information from the doctors [7]. Studies show that information about incurable cancer and impending death can triggered existential issues and angst [2] and the transition from discussing a cure to enter PC can cause emotional distress to the patient, the family and even health professionals [8, 9]. At this point the patient and family enter a very special and vulnerable time and the role of registered nurses (RNs) is to support them during this process.

Several studies have described the importance of receiving honest and sincere information about life being limited. This communication enables the patient and their family to prepare and plan for the end of life and focus on what is important in the remaining time. This is a meaningful and valuable part of the grieving process of the family, both during the PC and after the death [1]. Kirby et al. report that Australian palliative specialists find families’ situation critical when it comes to transitioning to PC [10]. They stress the importance of a new focus on training and education, including cultural competence education, of health professionals to enable a more comprehensive understanding of the patient’s family and the challenging changes in their needs.

In Sweden, PC is based on WHO’s definition [11], as a means to improve the quality of life of patients facing life-threatening illness and of their families, regardless of diagnosis or age, including both at an early stage of serious illness and the late phase of end-of life. PC is not merely given in a specialized palliative clinic, but also in general care such as municipal care or at hospitals, where RNs have a central role. The Swedish guidelines [12] emphasize the need to inform the patient and family when the medical situation changes and cure no longer is an option. The information may be summarized by the treating doctor. Crucial for the upcoming care is that the patient and family understand the new direction of care.

Warnock emphasizes that transitions in health care constitute time points and a process where the RN has an important role, of taking part in giving information, and preparing and helping the patient to receive and cope with the information [13]. In describing the role of the RN and the challenges in breaking the bad news Griffiths et al. show that, of all the health care workers, RNs are the ones who are close to the patient and their family during the final period of life [14]. They have to face with patient’s existential issues and angst. However, they often feel unprepared and are in need of tailored education to be able to give optimal care at the end of life [14].

To summarize, the complex transition to PC is not fully explored, and the transition to PC distinguishes from other care transitions as it includes; the emotional component in facing death, the concern of timing the transition, and patient’s and family’s understanding of the process [9]. There is a lack of studies that focus on the role of the RN and the strategies RNs use to facilitate the transition to PC. Increased knowledge would give a better understanding that could contribute to development of supportive care in this phase of the illness trajectory irrespectively the disease has evolved over years or is a sudden change in health. Therefore, the aim of this study was to describe strategies RNs employ in facilitating the transition from life-prolonging care to PC for patients with incurable disease.

The study has a descriptive design [15]. Individual interviews were conducted with RNs working in a hospital-based specialized PC unit, including both inpatient care and advanced home care, at a university hospital in Sweden. Ethical approval was obtained from the Regional Ethics Board in Uppsala (Reg.no. 2013/244).

The findings show the complexities and dynamics of RNs’ work to facilitate patients’ transitioning between life-prolonging care and PC. The RNs in this study said they aimed for a balance between leading and following the patient and family. Their striving towards this balance can be seen as central to RNs’ work with patients who have just received information regarding their disease and the change in care from life-prolonging care to PC. The strategies the RNs used to facilitate transition were getting to know and creating a relationship with the patient, providing different forms of support, for example through enabling conversations, and taking different approaches to individuals’ needs, which could seen as central for providing PC. In a study about experiences of comfort among persons in need of PC, Coelho et al. found that patients felt more comfortable when healthcare was based on compassion, hope, interpersonal, transpersonal and intrapersonal relationships [18].

The findings further show that RNs used a range of strategies, but all RNs stressed that they always focused on what was best for the patient to facilitate the transition between life-prolonging care and PC. It has been noted that RNs are less able to meet a patient’s needs if the patient is not participating, or where communication is insufficient [19, 20]. In the present study the importance of responsiveness and respect for the patient’s wishes concerning prognostic information was emphasized. The patient’s needs for information can vary, ranging from a wish to know nothing at all to wanting to know all the details. According to Reinke et al. RNs give prognostic information by establishing what the patient already knows and then based on the patient’s wishes regarding the information [19]. The findings from this study showed same strategies, but some ethical dilemmas were mentioned, such as when the patient had one wish and the family another. This was described as a challenge and difficult to handle by the RNs. This need to be further explored for understanding of how RNs dealt with these dilemmas to further improve education and practice in PC.

Benzein et al. describes the characteristics and means of hope of persons with advanced cancer [21, 22]. Hope can be described as reconciliation with life and death and is central in palliative care [21, 22, 23, 24]. Reconciliation was something the RNs in the present study described as an important task to help patients with. One strategy RNs used was to find out where the patient was emotionally and how the information they had been given had been received. This was done during conversations focus on the impending death, where the patient was invited to take the lead, both regarding the content and in terms of time. This finding highlights the need for creating a space, a culture where the patients and their families feel safe to express existential concerns as well as aspects of spirituality [2, 6, 25]. As mentioned, the RNs tried to meet every individual’s wishes with respect to what information and how many details patients wanted. According to Griffiths et al. it is not only hard to determine what information to give but it is also difficult to judge when is the right time for information [14]. To give prognostic information too early could “close doors” to further talk – and to give it too late could mean that there is no time to prepare for death. Even if the essential of communication in PC is highlighted in literature and guidelines, errors related to PC are experienced by patients as communication and information errors and errors associate to trust/empathy. Warnock has put down guidelines and advice for giving patients’ bad news [13]. One of the guidelines stresses, as the RNs in the present study have done, that it is important to have both formal and informal talks. It is not always pre-booked and planned time that provides conditions for the best talk. Instead, staff have to make the most of the times when the patient or family hint they want to talk.

To explain different events to the patient and the family, as well as facilitate families’ participation, both in the talks and in the care, were other examples of ways to give support. Bloomer et al. confirm that family participation in planning end of life care is sufficient to give the patient the care he or she wants [26]. A family that is involved can also give the sense of meaning and closeness to the patient. RNs thought that planning end of life care is a process taking place during several meetings where patient and family attendance is a necessity. In our findings, RNs perceived it to be important to involve the family and give them support. Discussion of prognostic uncertainty is of importance for family members [27]. Often, the RNs wished for more open communication between the patient and the family, but they met barriers. They described guiding the patient and family through the challenging and vulnerable phase by being responsive, considerate and respectful; and by being honest while giving continuous support. Lundberg et al. state that a family’s emotional experience of support is more important than the support itself [28].

Registered nurses are uniquely positioned to support patients during this difficult time of transition. It encompasses not only what the RNs do, but also how they see the person in need of palliative care [29]. However, support given by health care personnel is valuable only when considered so, which suggests that RNs may need to adapt their strategies further and, moreover, that they need to strive to evaluate their strategies in consultation with the individuals in their care and their families.

Patients’ difficult and exposed situation needs to be addressed through a structured follow-up after informing about the change from life-prolonging care to PC. Registered nurses have a unique role of supporting both the patient and the family in the transition from life-prolonging care to PC for patients with incurable disease. RNs use strategies that require understanding and knowledge of the transition process, the ability to recognize and understand patients’ unique needs concerning the transition, and experience of how to meet those needs. Furthermore, RNs need to adapt their strategies and to strive to evaluate them in consultation with the individuals in their care and their families.