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1.
Interdisciplinary care of children with trisomy 13 and 18.
Weaver, MS, Anderson, V, Beck, J, Delaney, JW, Ellis, C, Fletcher, S, Hammel, J, Haney, S, Macfadyen, A, Norton, B, et al
American journal of medical genetics. Part A. 2021;(3):966-977
Abstract
Children with trisomy 13 and 18 (previously deemed "incompatible with life") are living longer, warranting a comprehensive overview of their unique comorbidities and complex care needs. This Review Article provides a summation of the recent literature, informed by the study team's Interdisciplinary Trisomy Translational Program consisting of representatives from: cardiology, cardiothoracic surgery, neonatology, otolaryngology, intensive care, neurology, social work, chaplaincy, nursing, and palliative care. Medical interventions are discussed in the context of decisional-paradigms and whole-family considerations. The communication format, educational endeavors, and lessons learned from the study team's interdisciplinary care processes are shared with recognition of the potential for replication and implementation in other care settings.
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2.
Nutrition and gastroenterological support in end of life care.
Schütte, K, Middelberg-Bisping, K, Schulz, C
Best practice & research. Clinical gastroenterology. 2020;:101692
Abstract
Malnutrition and the broad spectrum of cancer cachexia frequently occur in patients with malignant disease of all tumour stages and impact on survival and quality of life of patients. Structured screening for the risk of malnutrition with validated tools and nutritional assessment are the prerequisite for adequate nutritional support in cancer patients. In patients receiving tumour directed therapy, the patients diet should meet the requirements to give optimal support, while later on comfort feeding is part of symptom focused palliation. The basis of nutritional support in a malnourished patient is nutritional counselling, and nutritional support can be offered within a step-up approach meeting the patient's needs. A combination of nutritional support with interventions targeting metabolic changes and physical exercise is suggested to treat cancer cachexia.
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3.
Supportive and palliative care for people with respiratory problems and preexisting serious mental illness.
Peryer, G, Barnes, S, Farquhar, M
Current opinion in supportive and palliative care. 2020;(3):190-196
Abstract
PURPOSE OF REVIEW People living with serious mental illness are at a higher risk of developing respiratory problems that can lead to increased morbidity and early mortality. This review aimed to identify recent advances in care provision for people with respiratory problems and preexisting serious mental illness to ease symptom burden and reduce the risk of premature mortality. RECENT FINDINGS Intervention-based studies in this area are scarce. The evidence reviewed originated from observational studies. Concluding comments from the synthesis suggest there are specific needs for proactive screening of respiratory function as part of routine physical health checks across care settings for people living with serious mental illness, more stringent monitoring of comorbid chronic lung conditions and increased attention in reducing the frequency respiratory infections. Integrated services across care settings are needed to support people with serious mental illness to limit the impact of modifiable lifestyle factors known to be detrimental to respiratory health, such as smoking. SUMMARY Key priorities are identified to improve accessibility and inclusivity of respiratory care pathways for people living with serious mental illness to support early detection and proactive monitoring of respiratory problems to help reduce the risk of early mortality.
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4.
Supportive care in cancer-a MASCC perspective.
Olver, I, Keefe, D, Herrstedt, J, Warr, D, Roila, F, Ripamonti, CI
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2020;(8):3467-3475
Abstract
The term 'supportive care' arose from the medical oncology literature predominantly in the context of managing the toxicities of cancer treatment but embraces all symptom management through treatment and survivorship. Supportive care should be patient-centred with good communication which includes family and carers and applies across the cancer experience from diagnosis, treatment, survivorship to end of life care. Supportive care encompasses physical and functional, psychological, social and spiritual well-being to improve the quality of life. Supportive care must be evidence-based and thus further research is essential. Supportive care requires screening for some symptoms and tools for patients to report their outcomes. Supportive care has to accommodate new physical toxicities, emotional distress as well as financial toxicity. Supportive care is often delivered by medical oncologists but any organ-related specialist, geriatrician, palliative care clinician, pain specialist, nutritionist, psycho-oncologist, social worker, physiotherapist, nurse or allied health worker who is required to relieve a patient's symptoms or side effects may be involved in a multidisciplinary way. The field is evolving to embrace technology such as eHealth and mHealth capabilities which will enhance integrated care.
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5.
Integration of palliative, supportive, and nutritional care to alleviate eating-related distress among advanced cancer patients with cachexia and their family members.
Amano, K, Baracos, VE, Hopkinson, JB
Critical reviews in oncology/hematology. 2019;:117-123
Abstract
Advanced cancer patients with cachexia and their families can suffer from eating-related distress. This complex entity encompasses patients' struggle to nourish themselves, emotional and social consequences of their inability to maintain food intake, and profound disturbance in family relationships. With evidence-based nutritional care, as well as symptom management to enable food intake, cachexia can be mitigated to some degree. In addition, patients and families require psychosocial support and education to understand and cope with this condition. Only by taking an integrated approach can health care teams alleviate eating-related distress, improve quality of life (QOL), reduce interpersonal conflicts, and alter perceptions of nutritional neglect for patients and families. However, few studies have investigated eating-related distress among patients and families. The aim of this narrative review is to describe what is known about eating-related distress and the roles of integrated palliative, supportive, and nutritional care in improving QOL of patients and families.
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6.
Palliative Management of Gastric and Esophageal Cancer.
Halpern, AL, McCarter, MD
The Surgical clinics of North America. 2019;(3):555-569
Abstract
In patients with advanced esophageal or gastric cancer, it is highly likely that palliation of symptoms will become a focus of treatment. Dysphagia and obstruction are the most common complaints, and many of these patients can be treated with endoscopic interventions to alleviate symptoms. Bleeding, perforation, and nutritional issues are common problems. Attempts at palliation should be guided by thoughtful discussions regarding patients' goals of care. Owing to the high morbidity and mortality in patients with limited life expectancy, a strategy of working from the least invasive to the most invasive interventions should be guided by the patient's goals.
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7.
Image-Guided Palliative Interventions.
Requarth, JA
The Surgical clinics of North America. 2019;(5):921-939
Abstract
This article reviews a few surgical palliative care procedures that can be performed by surgeons and interventional radiologists using image-guided techniques. Treatment of recurrent pleural effusions, gastrostomy feeding tube maintenance, percutaneous cholecystostomy, and transjugular intrahepatic portosystemic shunts (TIPS) with embolotherapy of bleeding stomal varices is discussed.
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8.
A hunger for hunger: a review of palliative therapies for cancer-associated anorexia.
Childs, DS, Jatoi, A
Annals of palliative medicine. 2019;(1):50-58
Abstract
Cancer-associated anorexia, or loss of appetite, is prevalent, distressing to patients and their families, and associated with poorer outcomes in patients with advanced cancer. A well-defined therapeutic strategy remains to be defined. We present here a review of appetite loss in cancer patients with a summary of how best to manage this symptom.
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9.
Conservative management for patients with chronic kidney disease refusing dialysis.
Castro, MCM
Jornal brasileiro de nefrologia. 2019;(1):95-102
Abstract
Estimates suggest that 20-30% of the deaths of patients with chronic kidney disease with indication to undergo dialysis occur after refusal to continue dialysis, discontinuation of dialysis or inability to offer dialysis on account of local conditions. Contributing factors include aging, increased comorbidity associated with chronic kidney disease, and socioeconomic status. In several occasions nephrologists will intervene, but at times general practitioners or family physicians are on their own. Knowledge of the main etiologies of chronic kidney disease and the metabolic alterations and symptoms associated to end-stage renal disease is an important element in providing patients with good palliative care. This review aimed to familiarize members of multidisciplinary care teams with the metabolic alterations and symptoms arising from chronic kidney disease treated clinically without the aid of dialysis.
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10.
Enhancing the decision-making process when considering artificial nutrition in advanced dementia care.
De, D, Thomas, C
International journal of palliative nursing. 2019;(5):216-223
Abstract
BACKGROUND Nutritional problems often manifest during late-stage dementia, and some families may request to instigate artificial nutrition and hydration (ANH) therapies. In the US, an estimated one-third of nursing home patients with a severe cognitive impairment have artificial feeding tubes inserted. Fear that a relative could experience extreme hunger or thirst if they are not mechanically fed tends to be the main driver behind family's requests to implement artificial or enteral feeding methods. In contrast, artificial hydration is rarely given to older people with dementia in the UK and this practice of non-intervention tends to apply across all healthcare and hospice type environments. AIM: This literature review aims to evaluate the evidence to support the use and non-use of ANH. METHOD A literature review was undertaken to examine the evidence around ANH for patients with dementia to offer support to families or carers contemplating feeding choices. CONCLUSION This paper challenges the implementation of invasive ANH worldwide. It highlights how resorting to ANH does not necessarily lead to improvements in comfort, survival or wound healing. The risk of aspiration does not appear to significantly alter either.