scholarly journals The Experience of Decision Making in the Care of Children with Palliative Care Needs: The Experiences of Jordanian Mothers

2017 ◽  
Vol 40 (4) ◽  
pp. 240-256 ◽  
Author(s):  
Maha Atout ◽  
Pippa Hemingway ◽  
Jane Seymour
2018 ◽  
Vol 14 (12) ◽  
pp. e775-e785 ◽  
Author(s):  
Anjali V. Desai ◽  
Virginia M. Klimek ◽  
Kimberly Chow ◽  
Andrew S. Epstein ◽  
Camila Bernal ◽  
...  

Background: Prior work to integrate early palliative care in oncology has focused on patients with advanced cancer and primarily on palliative care consultation. We developed this outpatient clinic initiative for newly diagnosed patients at any stage, emphasizing primary (nonspecialist) palliative care by oncology teams, with enhanced access to palliative care specialists. Methods: We piloted the project in two medical oncology specialty clinics (for patients with myelodysplastic syndrome and GI cancer, respectively) to establish feasibility. On a visit-based schedule, patients systematically reported symptoms, information/decision-making preferences, and illness understanding. They also participated in discussions of their core values with their oncology nurse. Oncology teams were first responders to palliative care needs, whereas specialists were available for clinician support and direct patient consultation. Results: All 58 eligible patients were enrolled. In both clinics, patient self-reports documented a heavy symptom burden. Information/decision-making preferences and illness understanding levels varied across patients. Patients prepared new advance directives. Oncology nurses documented discussions of core values. Requests for palliative care consultation decreased over time as oncology teams embraced their primary palliative care role with coaching from the specialists. Clinic workflow and patient volume were maintained. Conclusion: Our pilot experience suggests that in outpatient oncology clinics, a structured, scheduled, and systematic approach is feasible to deliver palliative care to newly diagnosed patients with cancer at any stage and throughout their illness trajectory. This novel approach identified important, actionable palliative care needs, relying primarily on oncology teams to respond to these needs, while enhancing access to palliative care specialist input. Expansion to additional clinics will allow evaluation of scalability and generalizability, along with measurement of a broader range of important outcomes.


2021 ◽  
Vol 41 (05) ◽  
pp. 619-630
Author(s):  
Adeline L. Goss ◽  
Claire J. Creutzfeldt

AbstractThe palliative care needs of inpatients with neurologic illness are varied, depending on diagnosis, acuity of illness, available treatment options, prognosis, and goals of care. Inpatient neurologists ought to be proficient at providing primary palliative care and effective at determining when palliative care consultants are needed. In the acute setting, palliative care should be integrated with lifesaving treatments using a framework of determining goals of care, thoughtfully prognosticating, and engaging in shared decision-making. This framework remains important when aggressive treatments are not desired or not available, or when patients are admitted to the hospital for conditions related to advanced stages of chronic neurologic disease. Because prognostic uncertainty characterizes much of neurology, inpatient neurologists must develop communication strategies that account for uncertainty while supporting shared decision-making and allowing patients and families to preserve hope. In this article, we illustrate the approach to palliative care in inpatient neurology.


2021 ◽  
pp. 174749302110166
Author(s):  
Eileen Cowey ◽  
Markus Schichtel ◽  
Joshua Cheyne ◽  
Lorna Tweedie ◽  
Richard Lehman ◽  
...  

Background: Palliative care is an integral aspect of stroke unit care. In 2016, the American Stroke Association published a policy statement on palliative care and stroke. Since then there has been an expansion in the literature on palliative care and stroke. Aim: our aim was to narratively review research on palliative care and stroke, published since 2015. Results: The literature fell into three broad categories: a) scope and scale of palliative care needs, b) organisation of palliative care for stroke and c) shared decision making. Most literature was observational. There was a lack of evidence about interventions that address specific palliative symptoms or improve shared decision making. Racial disparities exist in access to palliative care after stroke. There was a dearth of literature from low and middle income countries. Conclusion. We recommend further research, especially in low and middle income countries, including research to explore why racial disparities in access to palliative care exist. Randomised trials are needed to address specific palliative care needs after stroke and to understand how best to facilitate shared decision making


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.


2021 ◽  
Author(s):  
Aoibheann Conneely ◽  
Jo-Hanna Ivers ◽  
Joe Barry ◽  
Elaine Dunne ◽  
Norma O’Leary ◽  
...  

Author(s):  
Abigail Sy Chan ◽  
Amit Rout ◽  
Christopher R. D.’Adamo ◽  
Irina Lev ◽  
Amy Yu ◽  
...  

Background: Timely identification of palliative care needs can reduce hospitalizations and improve quality of life. The Supportive & Palliative Care Indicators Tool (SPICT) identifies patients with advanced medical conditions who may need special care planning. The Rothman Index (RI) detects patients at high risk of acutely decompensating in the inpatient setting. SPICT and RI among cancer patients were utilized in this study to evaluate their potential roles in palliative care referrals. Methods: Advanced cancer patients admitted to an institution in Baltimore, Maryland in 2019 were retrospectively reviewed. Patient demographics, length of hospital stay (LOS), palliative care referrals, RI scores, and SPICT scores were obtained. Patients were divided into SPICT positive or negative and RI > 60 or RI < 60.Unpaired t-tests and chi-square tests were utilized to determine the associations between SPICT and RI and early palliative care needs and mortality. Results: 227 patients were included, with a mean age of 68 years, 63% Black, 59% female, with the majority having lung and GI malignancies. Sixty percent were SPICT +, 21% had RI < 60. SPICT + patients were more likely to have RI < 60 (p = 0.001). SPICT + and RI < 60 patients were more likely to have longer LOS, change in code status, more palliative/hospice referrals, and increased mortality (p <0.05). Conclusions: SPICT and RI are valuable tools in predicting mortality and palliative/hospice care referrals. These can also be utilized to initiate early palliative and goals of care discussions in patients with advanced cancer.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
In Gyu Song ◽  
Seung Yeon Kwon ◽  
Yoon Jung Chang ◽  
Min Sun Kim ◽  
Sung Hoon Jeong ◽  
...  

Abstract Background Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (PaPaS) was developed as a tool for screening pediatric patients for palliative care needs. The study aimed to evaluate the PaPaS as a reliable tool for primary care clinicians unfamiliar with palliative care. Methods This was a retrospective cohort study of patients referred to the pediatric palliative care teams in two tertiary hospitals in the Republic of Korea between July 2018 and October 2019. Results The primary clinical and pediatric palliative care teams assessed the PaPaS scores of 109 patients, and both teams reported a good agreement for the sum of the PaPaS score. Furthermore, the PaPaS scores correlated with those obtained using the Lansky performance scale. Although the mean PaPaS score was higher in the pediatric palliative care team, the scores were higher than the cut-off score for referral in both groups. Conclusion The PaPaS can be a useful tool for primary care clinicians to assess the palliative care needs of patients and their families.


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