BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.
METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.
RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.
CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.
BACKGROUND AND AIMS: Advance care planning (ACP) is communication about wishes and preferences for end-of-life care. ACP is not routinely used in any Norwegian hospitals. We performed a pilot study (2014-2017) introducing ACP on a thoracic medicine ward in Norway. The aims of this study were to explore which topics patients discussed during ACP conversations and to assess how patients, relatives and clinicians experienced the acceptability and feasibility of performing ACP.
METHODS: Conversations were led by a study nurse or physician using a semistructured guide, encouraging patients to talk freely. Each conversation was summarised in a report in the patient's medical record. At the end of the pilot period, clinicians discussed their experiences in focus group interviews. Reports and transcribed interviews were analysed using systematic text condensation.
RESULTS: Fifty-one patients participated in ACP conversations (41-86 years; 9 COPD, 41 lung cancer, 1 lung fibrosis; 11 women); 18 were accompanied by a relative. Four themes emerged: (1) disturbing symptoms, (2) existential topics, (3) care planning and (4) important relationships. All participants appreciated the conversations. Clinicians (1 physician and 7 nurses) participated in two focus group interviews. Reports from ACP conversations revealed patient values previously unknown to clinicians; important information was passed on to primary care. Fearing they would deprive patients of hope, clinicians acted as gatekeepers for recruitment. Although they reported barriers during recruitment, many clinicians saw ACP as pertinent and called for time and skills to integrate it into their daily clinical practice.
CONCLUSIONS: Patients, relatives and clinicians showed a positive attitude towards ACP. Focusing on present and future symptom control may be an acceptable way to introduce ACP. Important aspects for implementing ACP in this patient group are management support, education, training, feasible routines and allocated time to perform the conversations.
Advance care planning (ACP) is a communication process for mapping a patient's wishes and priorities for end-of-life care. In preparation for the introduction of ACP in Norway, we wanted to explore the views of Norwegian pulmonary patients on ACP. We conducted four focus group interviews in a Norwegian teaching hospital, with a sample of 13 patients suffering from chronic obstructive pulmonary disease, lung cancer or lung fibrosis. Analysis was by systematic text condensation. Participants' primary need facing end-of-life communication was "the comforting safety", implying support, information and transparency, with four underlying themes: 1) provide good team players; 2) offer conversations with basic information; 3) seize the turning point; and 4) balance transparency. Good team players were skilled communicators knowledgeable about treatment and the last phase of life. Patients preferred dialogues at the time of diagnosis and at different "turning points" in the disease trajectory and being asked carefully about their needs for communication and planning. Transparency was important, but difficult to balance. ACP for patients with life-threatening pulmonary disease should rest upon an established patient-doctor/nurse relationship and awareness of turning points in the patient's disease progression. Individually requested and tailored information can support and empower patients and their relatives.