Older patients with late-stage COPD: Care and clinical decision-making. A qualitative study with perspectives of patients, nurses and physicians

摘要

Background: Chronic obstructive pulmonary disease (COPD) is the only disease whose ageadjusted mortality continues to increase. The disease trajectory for the patients involves years of chronic illness, interrupted with periods of exacerbation and acute ventilator failure. An acute exacerbation is life-threating and two-year survival rate for hyperacapnic respiratory failure following noninvasive ventilation is about 50 %. Acute exacerbation often requires decisions about whether or not to initiate noninvasive ventilation and mechanical ventilation. Limiting such treatment for patients with serious deterioration of chronic obstructive pulmonary disease is closely associated with end-of-life decision-making.Aim: The overall aim of this thesis was to explore the physicians’ and nurses’ considerations and values in the decision-making processes regarding noninvasive ventilation and mechanical ventilation for older patients with late-stage COPD. Moreover, the aim was to elucidate the patients’ illness experiences and elucidate their involvement in decision-making regarding noninvasive ventilation and mechanical ventilation.Methods: This thesis has employed a qualitative research design, using a hermeneutic phenomenological methodological approach. The empirical material is based on both focusgroup interviews conducted with 14 physicians (four groups) and 26 nurses (six groups) and individual interviews conducted with 12 patients with late-stage COPD. The healthcare personnel worked bedside in either intensive-or respiratory wards. The participating patients were all in the late stages of the disease (GOLD III-IV). The discussions in the focus group interviews focused on the health care personnel’s rationales, values and considerations in the decision-making process regarding noninvasive ventilation and mechanical ventilation for these older patients. In the individual interviews the discussions focus on the patients’ illness experiences and involvement in the decision-making process. A pilot study was conducted prior to the focus group studies.Findings: The findings of this study are presented in three papers, which highlighted complementary aspects of the same phenomenon, namely the decision-making processes regarding ventilation support for patients with late-stage COPD. The principle findings running through all three papers are that patients with late-stage COPD are rarely included in decision-making about the possible treatment options at the end of their lives.In Study I, the findings reveal that the decision-making process is medically and ethically challenging for physicians. The physicians considered themselves to be autonomous decisionmakers by virtue of their medical knowledge and their legal position of responsibility for the final decision regarding treatment and care options. The physicians had no systematic or planned communication strategy to involve the patients in decisions about treatment. Identified barriers for not involving the patients include the physician’s assessment of the acuteness of the actual situation, shortcomings in communication, and organizational difficulties.In Study II, the findings show that the nurses found themselves operating within a cureoriented biomedical treatment culture wherein they were unable to stand up for the caring values. Additionally, the findings imply that nurses need a stronger awareness of their legal and ethical responsibility as nurses to be able to advocate for their right and the right of their patients to be included in decision-making processes.Findings in study III show that the participating patients experienced life as fragile and burdensome, interrupted by unpredictable and frightening exacerbations of their disease. The patients needed predictability in terms of involvement, compassion and care. Even though healthcare legislation and ethical codes for both physicians and nurses include the obligation to ensure that patients are informed, and that their values and preferences are taken into consideration in decision-making processes, the results from this study uncover that this is not the case in practice.Conclusion: Overall, this thesis demonstrates that neither patients nor nurses are included decision-making processes regarding mechanical ventilation or noninvasive ventilation. This is unacceptable. To ensure improvements and to promote respect for the autonomy of patients, healthcare professionals should initiate discussion about the patient’s preferences regarding treatment, and their hopes and their worries about future life and possible death. Ideally, it should be initiated when the patient’s health condition is stable. This requires clear leadership providing and an interdisciplinary culture that ensures patient involvement.