A Danish study evaluated end-of-life (EOL) discussions relating to incurable lung cancer from the perspectives of patients, family caregivers, and outpatient oncology nurses. Their findings demonstrate that such discussions are often limited. These results were published in the Journal of Family Nursing.
The researchers noted that 7% of deaths in Denmark are associated with lung cancer, and palliative chemotherapy is the treatment option provided in many cases. Therefore, they set out to review the implementation of EOL discussions in the context of palliative chemotherapy.
In this study, researchers used participant observation and informal and semi-structured interviews with patients and/or family caregivers, and focus group interviews with nurses at a Danish teaching hospital’s outpatient oncology clinic offering general palliative care. Patient participants had non-small cell lung cancer, small cell lung cancer, or mesothelioma and were being treated with second-line palliative chemotherapy.
Of the 28 participants, 9 were patients, 8 were family caregivers, and 11 were oncology nurses. Three themes regarding EOL discussions were prevalent: content of EOL discussions, timing of EOL discussions, and challenges in EOL discussions.
A content-related issue that emerged was EOL discussions often focused on treatment rather than other practicalities associated with end of life. For example, discussions with the oncologist focused on how long treatment would last or conversations with healthcare providers focused on treatment side effects. The nurses reported not engaging in discussions of existential matters with family members present. They were often not the initiators of EOL discussions and felt they should do so only if patients seemed ready for the discussion.
The nurses generally reported EOL discussions were initiated later than they should be and should be offered on a continual basis throughout the palliative treatment process. The nurses also expressed a sense that family members may not be ready for such discussions.
Family members reported feeling that initiating EOL discussions was difficult. One participant expressed that doing so felt like they were “giving up.” They were concerned that initiating these discussions would cause pain for other family members.
Also noted, treatment rooms seemed unsuitable for these discussions based on observations of both nurses and family members.
Lack of continuity of care also was a challenge for patients and family members in terms of possibly having difficult discussions with unfamiliar staff. Nearly all family caregivers stressed that continuity of care was an important factor for both EOL discussions and providing a sense of calm. Nurses reported having many tasks that would interfere with EOL discussions. Family members and nurses both noted that nurses seemed pressured for time.
“Our findings emphasize that end-of-life discussions between patients, family caregivers, and nurses were seldom initiated and, when they were, it was often too late,” the researchers concluded.
Ikander T, Dieperink KB, Hansen O, Raunkiær M. Patient, family caregiver, and nurse involvement in end-of-life discussions during palliative chemotherapy: a phenomenological hermeneutic study. J Fam Nurs. Published online September 22, 2021. doi:10.1177/10748407211046308