scholarly journals Formazione in Cure Palliative: un passo decisivo verso la qualità del fine vita

2013 ◽  
Vol 62 (1) ◽  
Author(s):  
Adriana Turriziani ◽  
Carlo Barone ◽  
Alessandra Cassano

Le Cure Palliative sono una risposta alla crescente necessità di assistenza per i malati affetti da patologie inguaribili, la cui presa in carico è spesso gravata dall’inadeguatezza della rete sociale e familiare, dalla scarsità delle risorse a loro destinate e dalla carenza formativa degli operatori sanitari. Sebbene il percorso istituzionale di questa nuova disciplina sia a buon punto, la conoscenza dei suoi principi fondanti è ancora molto limitata sia da parte dei cittadini sia, ancora più sorprendentemente, da parte degli stessi operatori, che ancora vedono nelle Cure Palliative una medicina della consolazione e della frustrazione. Al contrario, questa disciplina trova il proprio centro nella dignità dell’uomo fino alla fine della vita, proponendosi di rispondere in maniera globale a tutti i suoi bisogni e a quelli del nucleo familiare. Se il centro di tale risposta assistenziale è l’uomo, allora è necessario rendere lo stesso paziente in grado di identificare le proprie necessità ed entrare così nel processo decisionale sulla propria cura. Per giungere a questo tipo di relazione di cura, sinergica e consapevole, e ad una reale condivisione delle responsabilità si deve necessariamente passare attraverso una progressiva presa di coscienza della condizione di malato. Tale percorso deve essere guidato in primis da un medico formato in tal senso. Chi si avvicina al fine vita ha infatti bisogno di cure di alta qualità, che rispondano a tutte le sfere della persona coinvolte nella malattia, di continuità nell’assistenza e di relazioni terapeutiche stabili e mature. Parimenti, anche l’operatore che vive l’assistenza al fine vita deve avere gli strumenti adeguati per non danneggiarsi e lasciarsi sopraffare dall’intensità di queste relazioni. Da questo contesto nasce la necessità di un Master di studi che sviluppi competenze specialistiche e colmi il vuoto formativo in modo uniforme come primo passo verso un profondo e necessario cambiamento culturale. ---------- Palliative Care is an answer to the growing need of care for patients suffering from incurable diseases, whose management is often burdened by the inadequacy of the social and family networks, by limited resources and poor training of health workers. Although the institutional pathway of this new discipline is on its way, the knowledge of its founding principles is still very limited both among citizens and, even more surprisingly, among the same operators, who still see Palliative Care as a “consolation and frustration medicine”. On the other hand, this discipline focuses on the dignity of men till the end of life, trying to give a global answer to all their needs and those of their families. If the center of the health care response is the human being, then it should be the same patient to be able to identify his needs and thus to enter into the decision-making process. In order to achieve this level of care relationship, synergistic and aware, and a real sharing of responsibilities, patients must go through a gradual understading of their own disease condition. A trained physician should guide patients through this foundamental journey. In fact, people approaching the end of life do indeed need high quality care, which should meet all their inner spheres, but also continuity of care and stable and mature therapeutic relationships. Similarly, every health worker who lives patients’ end of life should have proper tools not to be damaged and not to be overwhelmed by the intensity of these relationships. In this context, a Master in Palliative Care is meant to develop specialized skills and fill the educational gap and it should be the first step towards a deep and claimed cultural change in our country.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 83-83
Author(s):  
Rebecca M. Prince ◽  
Shuyin Liang ◽  
Mantaj Brar ◽  
Stephanie Ramkumar ◽  
Adena Scheer ◽  
...  

83 Background: Increasing recognition that high-quality end of life care is essential has resulted in internationally endorsed metrics allowing assessment of interventions at the end of life. Median survival for mCRC patients has improved to more than 24 months resulting in increased opportunity to undergo interventions for symptom relief at the end of life. We explored patterns of palliative interventions (chemotherapy, radiotherapy, surgery, endoscopy, drainage procedures) and outcomes in mCRC patients. Methods: A retrospective review was undertaken of all mCRC patients referred to the palliative care service from 2000 to 2010 at a tertiary cancer center in Toronto, Canada. Descriptive statistics, survival analysis and regression were employed. Results: A total of 542 patients were included of whom 52.8% were male, mean age was 62.8 years and 44.6% had stage 4 disease at diagnosis. Over the course of their disease 93.9% had an intervention at any time after their diagnosis including 27.5% of patients undergoing palliative surgery, 77% of patients had an intervention in the last year of life and 19.1% had an intervention in the last 30 days of life. The percentage of patients receiving interventions within the last 14 days of life were 1.23% for chemotherapy, 4.6% for radiotherapy, 0.5% for surgery, 10.4% for endoscopy and 23% drainage procedures. The mean time between referral to palliative care and death was 7 months (SD 10.4). For patients who received chemotherapy, the mean time between last chemotherapy and death was 9.5 months (SD 14.9). Overall survival for patients who did not receive chemotherapy was 28 months (SD 33) compared with 40 months (SD 32) for those who received chemotherapy. Regression analysis for risks of dying within 30 days of chemotherapy was limited by a low event rate. Increasing age was significantly associated with a lower risk of dying within 30 days of chemotherapy. Conclusions: In their final months of life, palliative mCRC patients undergo a significant number of interventions aiming to improve quality of life. These require considerable multi-disciplinary input with ramifications for quality care, planning for service provision and funding.


2021 ◽  
Vol 15 ◽  
pp. 263235242110513
Author(s):  
Claude Chidiac ◽  
Kate Grayson ◽  
Kathryn Almack

Background: Despite national policy recommendations to enhance healthcare access for LGBT+ (lesbian, gay, bisexual, transgender, and those who do not identify as cisgender heterosexual) people, education on LGBT+ issues and needs is still lacking in health and social care curricula. Most of the available resources are focused on primary care, mental health, and sexual health, with little consideration to broader LGBT+ health issues and needs. The limited available educational programmes pertaining to LGBT+ individuals outside the context of sexual or mental health have mainly focused on cancer care or older adults. Aim: To support palliative care interdisciplinary teams to provide LGBT+ affirmative care for people receiving and needing palliative and end-of-life care. Methods: A 1½-h workshop was developed and evaluated using Kotter’s eight-step process for leading change. Across four hospices, 145 health and social professionals participated in the training. A quasi-experimental non-equivalent groups pre–post-test design was used to measure self-reported levels of knowledge, confidence, and comfort with issues, and needs and terminology related to LGBT+ and palliative care. Results: There was a significant increase in the reported levels of knowledge, confidence, and comfort with issues, needs, and terminology related to LGBT+ and palliative care after attending the training. Most participants reported that they would be interested in further training, that the training is useful for their practice, and that they would recommend it to colleagues. Conclusion: The project illustrates the importance of such programmes and recommends that such educational work is situated alongside wider cultural change to embed LGBT+-inclusive approaches within palliative and end-of-life care services.


2019 ◽  
Vol 1 (2) ◽  
pp. 4-16
Author(s):  
Helen Hudson ◽  
Amélie Perron ◽  
David Kenneth Wright

Due to the criminalization of marginalized people, many markers of social disadvantage are overrepresented among prisoners. With an aging population, end of life in prison thus becomes a social justice issue that nurses must contend with, engaging with the dual suffering of dying and of incarceration. However, prison palliative care is constrained by the punitive mandate of the institution and has been critiqued for normalizing death behind bars and appealing to discourses of individual redemption. This paper argues that prison palliative has much to learn from harm reduction. Critical reflections from harm reduction scholars and practitioners hold important insights for prison palliative care: decoupled from its historical efforts to reshape the social terrain inhabited by people who use drugs, harm reduction can become institutionalized and depoliticized. Efforts to address the harms of substandard palliative care must therefore be interwoven with the necessarily political work of addressing the injustice of incarceration.


2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 168-168
Author(s):  
Jessica Ann Reifer Hildebrand ◽  
Renuka Bhan

168 Background: Recent studies have observed that starting Palliative Care (PC) soon after diagnosis for patients with advanced cancer improves quality of life, end of life (EOL) care, and possibly survival. Consequently, it has been recommended that combined standard oncology care and PC should be considered early in the course of illness for patients with advanced cancer. It has been posited that patients enrolled in early PC receive less aggressive care at the EOL and consequently spend fewer healthcare dollars. We sought to compare the aggressiveness of care received by those enrolled in early PC to those enrolled in late PC. Methods: A retrospective chart review of patients diagnosed with stage III or IIII colorectal cancer (CRC) at New Hanover Regional Medical Center between 2009 through 2011 was performed. Patients who were enrolled in PC within 30 days of diagnosis were compared to those enrolled later. Aggressiveness of care given during the last 30 days of life was assessed by: hospitalizations, ED visits, days spent in the ICU, chemotherapy received in the last 14 days of life, and death in the hospital. Results: 186 patients were identified for the study, and 89 met inclusion criteria. We found no significant difference in the aggressiveness of care received by those enrolled in early PC (46.7%) versus later PC (47.8%) (p = 1.00). In fact, almost half of all patients with advanced cancer received some form of aggressive care within the last 30 days of life. While those enrolled in late PC more frequently received chemotherapy, were admitted to the ICU, and died in the hospital, the differences were not statistically significant. Whether or not these differences account for cost savings in the early PC group has yet to be determined. Conclusions: Our study found that patients were just as likely to receive aggressive care at the EOL regardless of whether or not they were enrolled in early PC. This finding was unexpected given the goals and philosophy of PC groups. While early PC has been recommended as a quality care measure, patient and physician factors may limit its effectiveness. For example, patients, while receptive to certain aspects of PC, still desire a cure. Similarly, physicians feel compelled to treat patients aggressively.


2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 45-45
Author(s):  
Yasmin Karimi ◽  
Vasu Divi ◽  
Sandy Srinivas ◽  
Andrea Segura Smith ◽  
Jennifer Hansen ◽  
...  

45 Background: 22% of US patients with cancer die in a hospital setting. As part of an effort to reduce unexpected inpatient (inpt) mortality, we reviewed records of all inpt cancer deaths at Stanford Hospital and reported findings to the treatment teams. Methods: Deaths with a cancer related ICD 9/10 code between 5/2017 and 6/2019 were reviewed by a multidisciplinary team. Findings and potential opportunities for improvement were communicated to the pt’s primary outpt oncologist, inpt oncologists and other involved providers. Observed to expected (O:E) mortality for the year prior to the intervention (5/2016–4/2017), Year 1 (5/2017–4/2018) and Year 2 (5/2018–4/2019) of the intervention were compared with two sided t test, α=0.05 (Vizient Inc, Irving TX). Changes in supportive care utilization and end of life care between cases reviewed in Year 1 and Year 2 were compared with chi square analysis. Results: There were 236 inpatient deaths reviewed. The median age was 64 years; 76% had solid tumors; 68% had metastatic disease; 33% had a previous inpt admission; 34% received chemotherapy in the last 2 weeks of life. Median length of stay was 7 days and 37% were admitted to the intensive care unit (ICU). The O:E mortality ratio significantly decreased between the year prior to intervention and Year 2 (0.95 vs. 0.69; p = .019), and Years 1 and 2 (0.90 vs. 0.69; p = .003). There was no noted difference in number of palliative care consults or resuscitation status at the time of death between Years 1 and 2. There was an increased frequency of advance care plan documentation on admission in Year 2 (p = .007). Conclusions: Cancer pts who die in the hospital have high rates of recent hospitalizations, chemotherapy/radiation use in the last 2 weeks of life and ICU admissions. Decrease in O:E is likely multifactorial. Potential factors are improved documentation of comorbidities, increased access to palliative care services, and facilitation of hospice referrals which were partially driven by results of our reviews and resulting awareness around end of life care. Work is ongoing to standardize documentation of goals of care conversations in the electronic medical record and employ lay health workers for earlier end of life discussions.


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