Neurological disorders other than dementia

2015 ◽  
Author(s):  
Raymond Voltz ◽  
Stefan Lorenzl ◽  
Georg Nübling
Keyword(s):  
Palliative Care ◽  
Neurological Disorders ◽  
Controlled Trial ◽  
Scientific Evidence ◽  
Care Needs ◽  
Specific Symptom ◽  
Positive Effects ◽  
Care Approach ◽  
Palliative Care Needs ◽  
Lateral Sclerosis

The significance of a palliative care approach for patients with neurological disorders other than dementia is increasingly recognized. Whereas the care for these patients, for example, those with amyotrophic lateral sclerosis (ALS) or motor neuron disease, had been incorporated in the initial concept by Dame Cicely Saunders, recent scientific evidence supports this position. The need for palliative care in these patients is underpinned by their frequent wish for hastening death. This chapter describes palliative care approaches for a number of neurological disorders other than dementia. For ALS, palliative care management including specific issues such as respiratory insufficiency or malnutrition are fairly well established. Also, in parkinsonian syndromes, a lot of palliative care needs can be recognized and managed effectively. For patients with multiple sclerosis, the first randomized controlled trial showed clearly positive effects on symptoms as well as usage of health-care resources. The chapter also summarizes the drug use for specific symptom management, accounting for alternative application routes.

Neurological disorders other than dementia

2021 ◽  
pp. 996-1003
Author(s):  
Raymond Voltz ◽  
Stefan Lorenzl
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Neurological Disorders ◽  
Symptom Management ◽  
Scientific Evidence ◽  
High Rate ◽  
Positive Effects ◽  
Care Approach ◽  
Lateral Sclerosis

The significance of a palliative care approach for patients with neurological disorders other than dementia, such as patients with amyotrophic lateral sclerosis, was recognized by Dame Cicely Saunders in her conceptualization of hospice and is increasingly supported by scientific evidence. From the clinical perspective, the need for palliative care is underscored by the high rate of requests for hastening death. This chapter describes palliative care approaches for a number of neurological disorders other than dementia. For amyotrophic lateral sclerosis, the literature has focused on the management of respiratory insufficiency and malnutrition. For patients with multiple sclerosis, the first randomized controlled trials of palliative care show positive effects on symptoms and healthcare utilization. For populations with parkinsonian syndromes, the literature discusses many interventions that can reduce suffering and improve quality of life. This literature is summarized and specific recommendations for symptom management are presented.

scholarly journals What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Psychological Needs ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Complex Needs ◽  
Sequential Explanatory ◽  
Palliative Care Needs

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.

scholarly journals 96 Estimation of palliative care needs of people experiencing homelessness using mortality data and cause-of-death

2021 ◽  
Author(s):  
Aoibheann Conneely ◽  
Jo-Hanna Ivers ◽  
Joe Barry ◽  
Elaine Dunne ◽  
Norma O’Leary ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cause Of Death ◽  
Mortality Data ◽  
Care Needs ◽  
Palliative Care Needs

Palliative Referrals in Advanced Cancer Patients: Utilizing the Supportive and Palliative Care Indicators Tool and Rothman Index

2021 ◽  
pp. 104990912110178
Author(s):  
Abigail Sy Chan ◽  
Amit Rout ◽  
Christopher R. D.’Adamo ◽  
Irina Lev ◽  
Amy Yu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Length Of Hospital Stay ◽  
Inpatient Setting ◽  
Advanced Cancer Patients ◽  
Care Needs ◽  
Early Palliative Care ◽  
Code Status ◽  
Palliative Care Needs

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.

scholarly journals Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
In Gyu Song ◽  
Seung Yeon Kwon ◽  
Yoon Jung Chang ◽  
Min Sun Kim ◽  
Sung Hoon Jeong ◽  
...  
Keyword(s):  
Palliative Care ◽  
Retrospective Cohort ◽  
Pediatric Patients ◽  
Palliative Care Team ◽  
Pediatric Palliative Care ◽  
Care Needs ◽  
Palliative Care Teams ◽  
Primary Care Clinicians ◽  
Palliative Care Needs ◽  
Screening Scale

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.

scholarly journals A New Approach to the Identification of Palliative Care Needs and Advanced Chronic Patients among Nursing Home Residents

2021 ◽  
Vol 18 (6) ◽  
pp. 3171
Author(s):  
Ana A. Esteban-Burgos ◽  
María José Lozano-Terrón ◽  
Daniel Puente-Fernandez ◽  
César Hueso-Montoro ◽  
Rafael Montoya-Juárez ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
Statistical Significance ◽  
Nursing Home Residents ◽  
Cross Sectional Study ◽  
Care Needs ◽  
Chronic Patients ◽  
Cross Sectional ◽  
Surprise Question ◽  
Palliative Care Needs

Background: Proper planning of Palliative Care in nursing homes requires advanced knowledge of the care needs that residents show. The aim of the study was to evaluate Palliative Needs and other conditions such as fragility, complexity, and prognosis and also to suggest new indicators for the establishment of the resident’s advanced chronic condition. Methods: Cross-sectional study conducted in 149 nursing homes Complex Chronic residents evaluated by trained professionals. Palliative Care Needs, assessed by the NECPAL ICO-CCOMS© tool, and fragility, case and palliative complexity and prognosis were evaluate through a comprehensive assessment. Descriptive analyses and association measures were performed setting the statistical significance at 0.05. Results: More than 50% of the residents had positive Surprise Question and other Palliative Needs and were classified as Advanced Chronic Patients. Distress and/or Severe Adaptative Disorder was the most frequent need shown by the residents and significant differences in levels of frailty and other characteristics, were found between the Positive and the Negative Surprise Question Groups. Statistically significant correlations were also found between aspects of both groups. Conclusions: Nursing homes residents show Palliative Needs regardless of the response to the Surprise Question of the NECPAL tool. Other characteristics such as presence of an intermediate level of frailty are suggested as a new perspective to identify advanced chronic patients among nursing homes residents.

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