Care for Dying Patients at Midlife

Experiences of Nurses in Specialized Palliative Home Care

Jaana Kaup, MSc, SRN; Lina Höög, MSc, SRN; Maria E. Carlsson, SRN


Journal of Hospice and Palliative Nursing. 2016;18(6):564-571. 

In This Article

Abstract and Introduction


The aim of the study was to highlight nurses' experiences of caring for patients in palliative care at midlife, and describe their coping strategies. This study used a qualitative methodology with an inductive and an abductive approach. The analysis started with systematic text condensation. Later in the analysis, an abductive profile inspired by the concepts of a "tentative coping model for nurses in cancer care" was used. Fourteen participants, from 3 specialized palliative home care teams, were interviewed in 3 focus groups. Three themes and 9 codes represented the participants' experiences and coping strategies: experiences of significances: participants felt admiration for the patients, they became invigorated by their encounters with their patients, and they got confirmation that they did well; stress: participants described how they were affected by external influences, psychological stress, and stress-related symptoms; and coping: participants described the various individual-, group-, and organizational-level coping strategies they used in their daily work and the formal and informal support they received. Based on their descriptions, palliative care nursing was stressful for the nurses. They had various coping strategies and significances that helped them care for the families in the most difficult situations. The study also revealed how important formal support was to the nurses.


To be cared for at home, at the end of life, is a strong desire for many patients as well as for their relatives. When the patients are in midlife, it is even more vital so that the young family could live together. Specialized palliative home care has been available in Sweden since the 1970s by specialized palliative home care teams (SPHCT). It is provided on a 24-hour basis 7 days a week, it is free of charge, and it is supported by the county councils. The SPHCT offers most of the palliative technologies of a hospital, in the patient's own home. There are approximately 60 such home care teams across Sweden. The Swedish health care system and its organization of palliative care have been described previously.[1]

Children as Relatives

According to an amendment in Swedish health care law,[2] health care workers in Sweden have been obliged, since January 1, 2010, to provide for children's needs for health information and advice regarding their parents, or other adults whom they live with, who have been affected by severe disease. They are also obliged to support the children's other parent/other adults afflicted by disease. Several studies report that children and youth need adapted support to handle their grief.[3,4,5] That the life situation is trying for patients with advanced cancer with small children is shown in a recent study, parents describe their worries for their children, and the most troublesome issue was what happens to the children.[6]

Difficulties for Nurses

According to a review by Ettema et al,[7] existential loneliness is difficult to articulate, is underreported, and creates great suffering for patients and their relatives. A study by Browall et al[8] examined nurses' experiences in dealing with patients' needs by talking about existential questions that arise close to death. This study reported that nurses are often able to meet the patients' needs. The included nurses believed that it was their responsibility to talk about these issues, with both patients and their relatives. To care and become close to young patients who are living with the knowledge that they could soon die and leave their family and the social context is difficult.[9] To be the professional in this kind of situation can often be very stressful and exhausting. The definition of patients in midlife in the present study is patients with a very trying life situation with children living at home and still are in working age.

Interaction Between the Nurse and the Patient and Patient's Family

The patient and their family have an effect on each other throughout the course of the disease, and their feelings oscillate between hope and despair. Many families make an effort to spend quality time together, and there is a new awareness of the shortness of time. Some families have difficulties in dealing with this, and conflicts and hard feelings can emerge, which are often pushed away. In such situations, the nurse can be of some help to the patients and family to cope with the situation. For the nurse, to judge when, and how much, to intervene in difficult family situations is challenging and needs careful consideration.[9,10] That the nurses consider themselves as guests in the patients home[11] or as visiting strangers[9] also impacts the interaction in other ways than working in institutional care. A study by Milberg and Strang[12] showed that sharing the responsibility for the care of their dying family member with palliative expertise and gaining support act as protections against feelings of powerlessness and helplessness in relatives. The availability of the SPHCT is extremely important to relatives as it increases their sense of security and the possibility for the patients to be in their home environment. Most studies have been done on patients' feelings and satisfaction with palliative care; less attention has been given to the nurses' feelings and experiences. Furthermore, nursing in hospital settings has been extensively studied compared with the home care environment.[9]

Theoretical Framework

The capability to care, even in demanding situations, has been described as important and is a capability that also strengthens nurses in their professional role.[13] Ekedahl and Wengström[13,14] have developed a model including key concepts such as stress, coping, significant experiences, assessments, and life orientation. The concept of significance, or significant experiences, implies that people strive and care for something. The feelings and beliefs are associated with feelings of self-worth, importance, and value. Events become stressful when they influence something that people care about, that is, has a significant value. Stress is an individual experience where different events affect the person in varying degrees. The individual appraises the stressful situation and knows what kind of resources is available; the individual has the right to define what is stressful. In the model, coping strategies are placed in 4 different levels: the individual, the group, the organization, and the culture at work. The model uses 3 different types of assessments: primary, secondary, and tertiary. The primary evaluation, the first part of the assessment, attempts to estimate how big the threat is to the significant value. The secondary assessment estimates the resources that are available or that are missing from the current situation. The tertiary assessment is about preserving the significance in the least demanding manner. Life orientation, in this model, consists of 3 aspects, the largest of which is referred to as "Caritas,"[15] which is a central concept for the nurse in the care of the patient and means the desire to do good deeds. The second aspect is of a more general nature; it is not specifically linked to the nursing profession but is about humanity and what it means to be a human being. The third is referred to as the "religious/existential sector" where our existential view has its roots.

Purpose of the Study

The study aimed to highlight nurses' experiences of caring for midlife patients in specialized palliative home care and investigate the coping strategies the nurses use to deal with this.