Advance care planning in life-threatening pulmonary disease: a focus group study

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

Advance care planning in life-threatening pulmonary disease: a focus group study

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

Feasibility and acceptability of introducing advance care planning on a thoracic medicine inpatient ward: an exploratory mixed method study

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

Disseminated <i>Mycobacterium avium</i> complex infection in a woman with anti-interferon-gamma autoantibodies

Defects in the interleukin-12/interferon-gamma (IFN-γ) pathway and anti-IFN-γ antibodies have been associated with severe nontuberculous mycobacteria (NTM) infections. Consequently, disseminated NTM infections should prompt investigations for immunodeficiency. Herein, we report a case of a treatment refractory and ultimately disseminated and fatal Mycobacterium avium complex infection in a 71-year-old woman of Thai origin. Simultaneously, she had recurrent Salmonella kentucky cultured from stool samples and chronic perianal HSV-2 lesions. Late in the course of disease, anti–IFN-γ autoantibodies were demonstrated. Clinical studies investigating immunomodulating therapy and treatment among patients with anti-IFN-γ autoantibodies are lacking and, in this case, treatment seemed of a more palliative nature