This paper is aimed at focusing on the writings and the experience of the Hospice movement Founder, Dame Cicely Saunders. The in-depth analysis carried out had the objective of verifying if "the way" of Cicely to understand, live and propose palliative care was still current and "beautiful", so that we can nowadays refer to her fascinating "Original Palliative Care". With "beauty" we mean, on the one hand, a way able to allow a personal path of research of the meaning of the disease and of the care, both for those who care and for those who are cared for. On the other hand, it seems to us that Cicely strongly suggests how this path can not be carried out alone, but is only possible within the context of a network of relationships and support, in a so called "relational autonomy", for the patient, included in a "care ethics". The authors believe that the work extensively documents as the overall approach of Cicely, traditional but always to be rediscovered, is still today the most convincing way of conception and action of palliative care.
PURPOSE: Early palliative care (EPC) has shown a positive impact on quality of life (QoL), quality of care, and healthcare costs. We evaluated such effects in patients with advanced gastric cancer.
METHODS: In this prospective, multicenter study, 186 advanced gastric cancer patients were randomized 1:1 to receive standard cancer care (SCC) plus on-demand EPC (standard arm) or SCC plus systematic EPC (interventional arm). Primary outcome was a change in QoL between randomization (T0) and T1 (12 weeks after T0) in the Trial Outcome Index (TOI) scores evaluated through the Functional Assessment of Cancer Therapy-Gastric questionnaire. Secondary outcomes were patient mood, overall survival, and family satisfaction with healthcare and care aggressiveness.
RESULTS: The mean change in TOI scores from T0 to T1 was - 1.30 (standard deviation (SD) 20.01) for standard arm patients and 1.65 (SD 22.38) for the interventional group, with a difference of 2.95 (95% CI - 4.43 to 10.32) (p = 0.430). The change in mean Gastric Cancer Subscale values for the standard arm was 0.91 (SD 14.14) and 3.19 (SD 15.25) for the interventional group, with a difference of 2.29 (95% CI - 2.80 to 7.38) (p = 0.375). Forty-three percent of patients in the standard arm received EPC.
CONCLUSIONS: Our results indicated a slight, albeit not significant, benefit from EPC. Findings on EPC studies may be underestimated in the event of suboptimally managed issues: type of intervention, shared decision-making process between oncologists and PC physicians, risk of standard arm contamination, study duration, timeliness of assessment of primary outcomes, timeliness of cohort inception, and recruitment of patients with a significant symptom burden.
CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov (NCT01996540).
Palliative sedation (PS) is performed in the terminally ill patient to manage one or more refractory symptoms. Proportional PS, which means that drugs can be titrated to the minimum effective dose, is the form most widely used. From a quarter to a third of all terminally ill patients undergo PS, with a quarter of these requiring continuous deep sedation. The prevalence of PS varies according to the care setting and case mix. The most frequent refractory physical symptoms are delirium and dyspnea, but PS is also considered for existential suffering or psychological distress, which is an extremely difficult and delicate issue to deal with. Active consensus from the patient and advanced care planning is recommended for PS. The decision-making process concerning the continuation or withdrawal of other treatments is not the same as that used for PS. The practice differs totally from euthanasia in its intentions, procedures, and results. The most widely used drugs are midazolam and haloperidol for refractory delirium, but chlorpromazine and other neuroleptics are also effective. In conclusion, some patients experience refractory symptoms during the last hours or days of life and PS is a medical intervention aimed at managing this unbearable suffering. It does not have a detrimental effect on survival.