Experiences of non-specialist nurses with patients and their significant others undergoing transitions during palliative end-of-life care: a systematic review protocol
Authors: Thorn Hrønn , Uhrenfeldt Lisbeth 
Published: December 2014

Review question/objective
What are non-specialist nurses' experiences when providing palliative end-of-life care that involves the psychosocial and existential transitions of their patients and significant others?

Background
According to the World Health Organization (WHO), cancer is the leading cause of death worldwide.1 There were an estimated 12.7 million cancer cases around the world in 2008. This number is expected to rise to 21 million by 2030, leading to a dramatic rise in the number of patients diagnosed with cancer accessing the health care system.1 Countries in the top ten in terms of the rise in numbers include Europe, Oceania and the Americas.1 Cancer may be treated in different ways; common types of treatment are surgery, chemotherapy and radiation therapy. The treatments aim to cure or prolong life while simultaneously improving the quality of life.1

Palliative care aims to provide a comprehensive and compassionate approach in the alleviation of suffering from physical, psychosocial, spiritual and existential symptoms for patients whose illness is not curable and for their significant others.1 Since the late 1960s, palliative care has been going through a rapid development worldwide and is deeply rooted in oncology.2 According to studies from UK and Sweden, palliative care should be available wherever the patient is receiving care. Therefore, the provision of palliative care may be the responsibility of a primary health care team, a hospital team, a specialist palliative care unit (hospice), or a combination of these at different stages during palliative end-of-life care.3,4

In view of the fact that cancer is the leading cause of death worldwide, every nurse, at some point in their career, will need to care for patients diagnosed with cancer.5 The care of patients with cancer has been explored in nursing literature. The studies mainly focused on the experiences of specialist trained registered nurses (RN) trained in treating the symptoms, side effects and emotional problems experienced by patients.6,7,8,9,11,12,13 Only a few studies have focused on non-specialist nurses' experiences when taking care of patients with cancer. These studies revealed that there is a need for non-specialist nurses to develop clinical competences so they can provide holistic care for patients and their significant others.5,14,15,16,17 Many patients with cancer are still being cared for by non-specialist nurses, although research shows that specialist trained nurses make a difference to the patient's physical, psychosocial and social wellbeing.5,14 A qualitative study by Steinhauser et al. included focus groups and in depth interviews of what patients, families, and providers described as the components of a good death. Participants identified six major components of a good death. These included pain and symptom management, clear decision-making, preparation for death, completion, contributing to others, and affirmation of the whole person.18 Proficient palliative nursing can facilitate and enable these components to be considered during end-of-life care.
Nurses who have an understanding of patients experiencing existential and psychosocial suffering can more easily help patients identify their own resources, provide more support and perform care that provides patients with strength as they transition during end-of-life care.19 A qualitative study by Badger et al. investigated nurses' experiences during end-of-life care, describing factors that facilitated or inhibited such transitions. The nurses experienced distress related to the complex emotions and indecisiveness of significant others, causing the patient to experience unnecessary suffering. An important facilitating factor was the significant other, health care staff and the patient agreeing on medical treatment.20

As the number of patients with cancer increases, the demand for hospital beds in non-specialist wards increases, along with the demand for specialist trained nurses.5 When a person's health status changes, they have to redefine themselves regarding social context and health status.21 During the course of palliative end-of-life care, a number of patients experience life events where they have little control over critical points in the changes in their life, leading to a feeling of chaos. These changes or transitions are complex and the process of self-organization which normally leads to new knowledge on how to cope during the chaos is lacking13 These transitions are multidimensional and a result of changes in health status, relationships, expectations, abilities and environment.21,22 When the illness becomes life-threatening, the patient may experience psychosocial and existential suffering4 such as anxiety, isolation, denial, existential despair and being unable to express the feeling of hopelessness.17 Existential concerns become more important and the patient and their significant others are likely to require support during this time of changing.4,23,24

Moving to palliative treatment represents a major change in the life of patients and their significant others and can be a traumatic experience.22 The course of palliative treatment may include multiple transitions such as moving from home to hospital, from ward to ward within hospitals and from hospital to hospice. These transitions may have a negative impact on patients and their significant others such as poor coordination of care, discontinuity of care, financial burden and psychological stress.25

An American study found that clinicians and patients have a different view of transitioning from curative to palliative care treatment. When no further curative treatment is possible, patients often think that there is nothing more to do, that they have no future; while the clinician sees this transitioning as a shift from curative to palliative care.26 Therefore, it is important for nurses to understand patients' experiences of transitions during palliative end-of-life care so that they can provide individual holistic care to patients and their significant others.26 In addition, we know that patients going through transitions experience feelings of unpredictability, anxiety, stress and a fear of being neglected. They can experience feelings of being powerless and losing control. In other words, these kinds of transitions involve loss and is undesirable.27 Transitioning into relief or recovery, on the other hand, can be a positive experience as the patient develops new skills and coping strategies.27

Patients' significant others are also affected by transitions during the course of palliative end-of-life care. Significant others may also experience existential and psychosocial problems such as anxiety, worries about the future, powerlessness and not being able to alleviate their next of kin's suffering. They experience changes in roles and relationships, for example a heightened sense of closeness to their sick next of kin.13,28 They also have to make critical decisions with regards to goals of care. These decisions are transitions where the focus of care is on quality of life rather than cure.29 Support from nurses for the significant others is essential for their wellbeing and quality of life as well as their involvement and closeness with the sick relative.13,30

The significant others may experience increasingly depressive symptoms during the course of palliative end-of-life care, but these symptoms may decrease after the death of their relative. The transition from being a caregiver to being in grief provides relief and may be the explanation of this positive experience of transitions.13

Nurses are primary caregivers of patients and their significant others during the course of palliative treatment.30 Nurses attend to patients' demands and changes, including paying attention to the patient's existential and psychosocial issues.17,31 Although nurses are aware of the fact that patients in palliative end-of-life care and their significant others experience psychosocial and existential suffering, the focus on these issues is rarely included in care planning.32 Taking care of patients during palliative end-of-life care is complex and encompasses a wide range of skills. Nurses experience challenges in providing holistic care encompassing physical, social, spiritual and psychological wellbeing of patients and their significant others.33 They experience a discrepancy between their ambition to give patients and their significant others high quality palliative care and the care that they are actually giving. "The nurses experience insufficient support from managers, and little understanding and commitment regarding their physical and mental health",3
(p.37) leaving nurses with a feeling of dissatisfaction, frustration and sorrow. On the other hand, nurses who feel satisfaction when giving palliative care experience happiness, increased knowledge and personal growth, which may have a positive impact on the quality of the palliative care delivered.3 When providing palliative end-of-life care, the nurse needs to be aware of the patient's needs to ensure quality of life and provide positive experiences at the end of life.34

An initial search in the databases PubMed, CINAHL, JBI ConNECT+, Google Scholar, Cochrane Library, PROSPERO and Trip database indicated that no systematic review of this topic exists, or is currently underway. However, in a published protocol of qualitative systematic review, patients and their significant others' experiences during transition are explored and it is known that the significant others' experiences of transfer are also being investigated.35,36

This systematic review will contribute knowledge that may support educational programs for nurses in non-specialized wards helping them to deliver holistic palliative care to patients and their significant others during the changing course of palliative end-of-life cancer care.

Definitions
For the purpose of this review, the following definitions will be used:

Transition:
"A transition denotes a change in health status, in role relations, in expectations, or in abilities. It denotes changes in the needs of all human system. Transition requires the person to incorporate new knowledge, to alter behavior, and therefore to change the definition of self in social context, of a healthy or ill self, or of internal and external needs, that affect the health status".21
(p.42)

Psychosocial:
Understood from the definition of "psychosocial oncology": "Psychosocial oncology is defined as a discipline that is concerned with all clinical and scientific attempts to clarify the significance of psychological and social factors in development and course of cancer".37
(p.508) This definition also includes psychological and social factors in the patients' and their significant others' process of coping with disease. This knowledge, if applied systematically, may lead to early detection, diagnosis, treatment and therapy of cancer patients.37

Existential:
Understood from a phenomenological perspective or approach which emphasizes the existence of the individual person as a free and responsible agent determining their own development through acts of will. Existential wellbeing enables an individual to respond to a crisis as a challenge and as an opportunity for personal growth in the search for meaning as a primary concern.38

Experiences:
Understood from an open phenomenological approach where the world is understood as experienced from the first-person point of view. Phenomenology is a method of describing phenomena in terms of our perception of them. It focuses, not on the nature of the objects perceived, but on our experience of perceiving them.39

Significant other:
Spouses, relatives, friends or someone who is important in one's life.40

Palliative end-of-life care:
"Is total care from a physical, social and existential perspective when an illness cannot be cured".3
(p.32)