Beyond striae cutis: A case report on how physical skin complaints unveiled end-of-life total experience.

BACKGROUND: End-of-life is a unique and multidimensional experience, and physical complaints can reveal other areas of distress. METHOD: A case report of a woman with terminal cancer with painful and deforming skin striae cared by a multidisciplinary team. RESULTS: After initially treating her physical pain, other end-of-life psychosocial, spiritual, and existential aspects could be addressed. SIGNIFICANCE OF RESULTS: Physical distress can unveil other essential areas of end-of-life experience when multidisciplinary teams caring for the terminally ill patients use holistic approaches.

The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors.

OBJECTIVE: Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit. METHOD: Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020. RESULTS: Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93-0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42-11.57]), shortness of breath (OR = 3.35; 95% CI [1.09-10.31]), well-being (OR = 7.64; 95% CI [1.63-35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09-+inf]); feeling anxious (OR = 11.11; 95% CI [2.51-49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10-298.29]); will-to-live (OR = 39.53; 95% CI [4.85-321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85-116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30-12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91-0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31-125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26-47.38]) predicted DfD. SIGNIFICANCE OF RESULTS: Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.

"Truly holistic?" Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients.

OBJECTIVE: Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation. METHOD: The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018-January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question "Are you depressed?" (SQD), (3) the question "Do you feel anxious?" (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL). RESULTS: Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively). SIGNIFICANCE OF RESULTS: There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.

Repeated filling of elastomeric infuser pumps for home-based subcutaneous medications: a case series.

BACKGROUND: Several medical devices have been developed for continuous subcutaneous drug infusion for home palliative care (HPC), such as elastomeric infuser pumps (EIP). There is no evidence on the repeated filling of EIP for continuous subcutaneous delivery for HPC. AIM: A clinical case series report of terminally-ill patients cared for in HPC, with repeated filling of EIPs for home-based subcutaneous medications. METHODS: A retrospective analysis of each patient's EIP-related entries in an anonymised database regarding: 1) EIP general functioning aspects; 2) clinical aspects: symptom control and local skin complications. Overall and per-patient cost-saving was also calculated. FINDINGS: A total of 10 cases were analysed (four 50-hour EIP and six 30-hour EIP). All EIPs had a mean number of refillings (standard deviation (SD), mode) of 1.6 ((0.5), 2); with 3.2 drugs on average used in each EIP ((1.4), 4). Approximate total mean (SD) usage time for both types of EIP was 87 (29) hours; and all EIP were used, on average (SD), 49 (23) hours more than its labelled duration. All EIPs showed a complete reservoir deflation between refilling. Only one patient had a minor skin complication and no symptom aggravation was observed, except for two cases with mild anxiety and agitation. Cost-saving analysis for the complete case series showed that EIP refillings saved, on average, €24 per-patient and a total of nearly €240, for both types of infuser pumps. CONCLUSION: This preliminary study suggests that refilling is safe and reduces cost. Future research on EIP refilling using controlled and systematic methodologies are warranted.