Discussions about palliative sedation in hospice: Frequency, timing and factors associated with patient involvement

Abstract

Objective To investigate whether and when palliative sedation was discussed with hospice patients with cancer and/or with their families and factors associated with patient involvement in such discussions. Methods Medical records of all patients with cancer who died in an Italian hospice in 2014–2015 (N = 326) were retrospectively reviewed. Multiple logistic regression was used to assess the association between patients’ characteristics and palliative sedation discussion with the patient versus palliative sedation discussion only with the family. Results Palliative sedation discussion was in 51.8% of the cases reported in the record. In most of the cases, discussions were conducted pre‐emptively. Palliative sedation was used for 67.3% of the patients who were involved in the discussion and for 32.7% of the patients when the topic was discussed only with the family. Patient involvement in palliative sedation discussions was negatively associated with living with others (OR 0.34, CI 0.15; 0.77), and positively associated with awareness of prognosis (OR 5.61, CI 2.19; 14.33) and days of survival after hospice admission (OR 3.41, CI 1.55; 7.51). Conclusion Policies encouraging patient involvement in palliative care decision‐making, including palliative sedation, should be implemented and their adoption should be carefully examined. Prospective studies addressing this topic are needed.

Patient‐centredness in acute stroke care – a qualitative study from the perspectives of patients, relatives and staff

“…IVT or EVT indication for patients with severe pre‐stroke conditions or patients for whom a good clinical outcome is unlikely was discussed as problematic by staff members. Further research is needed to investigate how physicians can be better supported in these critical cases not covered by guidelines and whether patient (representative) involvement could potentially support this, as has been explored for palliative and end‐of‐life care [20‐24]. Patient (representative) involvement in guideline development has been recommended and trialled for various conditions [25‐32], and several countries use patient (representative) committees for guideline development in stroke as well.…”

Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives

“…On the one hand, CDS is traditionally regarded as a ‘last resort’ medical decision, for which a physician is ultimately responsible 2–4,6 . On the other hand, there is strong agreement that the key to improvement of end‐of‐life care is to make the care consistent with patient preferences by an individualized process of decision‐making 26,27 . In our study, respondents often said that the decision was eventually made by the patient or relative, the latter in the case of cognitive impairment of the patient.…”

“…[2][3][4]6 On the other hand, there is strong agreement that the key to improvement of end-of-life care is to make the care consistent with patient preferences by an individualized process of decision-making. 26,27 In our study, respondents often said that the decision was eventually made by the patient or relative, the latter in the case of cognitive impairment of the patient. Many saw the role of physicians mainly as advising on available end-of-life care options, and on the right timing for CDS initiation.…”

“…All respondents recruited via the UMCU patient panel (26) were included as patients, as they all received care for a variety of serious illnesses at the UMCU and therefore in a situation in which they had contemplated or discussed the option of CDS. Twenty-six respondents had experience as a relative of a patient for whom CDS was considered (5) or performed (31) and some respondents reported on more than one CDS case.…”