Feeding, cachexia, and malnutrition in children’s palliative care

2021 ◽  
pp. 231-243
Author(s):  
Sanjay Mahant ◽  
Michelle Meiring ◽  
Adam Rapoport
Keyword(s):  
Palliative Care ◽  
Medical Condition ◽  
Psychosocial Interventions ◽  
Neurological Impairment ◽  
Basic Care ◽  
Parental Nutrition ◽  
Care Approach ◽  
Chronic Morbidity ◽  
Negative Feelings

Feeding a child is considered basic care. As such, when a medical condition impacts a child’s desire or ability to feed and grow, the concerns and negative feelings experienced by the family can be profound. This chapter reviews strategies to promote safe feeding in children, especially those with underlying neurological impairment, in an effort to optimize growth and overall quality of life. The indications and challenges with enterostomy tubes and total parental nutrition (TPN) are also discussed. The concept of ‘feeding for comfort’ at the end of life in children who no longer desire to feed or when feeding causes suffering are explored, as well as the medical and psychosocial interventions to address anorexia and cachexia. Lastly, while the authors wholeheartedly support steps to rectify global malnutrition, a palliative care approach is provided to this problem which continues to result in chronic morbidity and mortality in millions of children annually.

Anxiety Disorders in Palliative Care

2014 ◽  
pp. 19-28
Author(s):  
William S. Breitbart
Keyword(s):  
Palliative Care ◽  
Anxiety Disorders ◽  
Medical Condition ◽  
Terminally Ill ◽  
Adjustment Disorder ◽  
Assessment Tools ◽  
Pharmacological Agents ◽  
General Medical Condition ◽  
Severe Anxiety

Anxiety is common in palliative care patients and may significantly impact patients’ quality of life. Anxiety can have many etiologies resulting in different anxiety syndromes, ranging from adjustment disorder, anxiety resulting from general medical condition, to medication-induced anxiety disorders. Pre-existing anxiety disorders should also be taken into consideration in palliative care settings. Different screening and assessment tools have been used to improve recognition and assessment of anxiety in the terminally ill. Treatment of anxiety in this patient population includes use of a variety of pharmacological agents to relieve severe anxiety symptoms and use of psychotherapy interventions that have been shown to be safe and effective in the terminally ill. This chapter includes an overview of the prevalence, assessment, and management of anxiety disorders in palliative care settings.

scholarly journals Development and Progress of a Collaborative Learning Model for Quality Improvement in the Field of Palliative Care in India

2021 ◽  
Vol 27 ◽  
pp. 189-196
Author(s):  
Nandini Vallath ◽  
Michelle De Natale ◽  
Karl A Lorenz ◽  
Sushma Bhatnagar ◽  
Jake Mickelsen
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Symptom Control ◽  
Healthcare Quality ◽  
Quality Of Services ◽  
Care Approach ◽  
Spiritual Connectedness ◽  
Individual Service ◽  
Quality Evidence

Quality is central to healthcare and even more so in the field of palliative care. Palliative care approach is centered around discovering facets of care crucial to improving the quality of life of the patient; be it symptom control, emotional concerns, impact on social roles or reviving the sense of spiritual connectedness. Although there are essential and desirable standards for quality of services, the journey taken by a service, toward quality improvement (QI), is often complex and uncharted. It is up to individual service units to strive toward improvement and reach higher levels of quality. Evidence suggests using a structured methodology for successful improvement in healthcare quality, as most problems are complex and multifaceted. This article introduces the concept and application of QI methodology in the field of palliative care in India and provides an overview of the first cohort of QI projects, facilitated through an international collaborative. The sequence of training, the tools, and the key ingredients for success are enumerated.

The psychosocial experiences of older palliative patients while participating in a Living with Hope Program

2016 ◽  
Vol 14 (6) ◽  
pp. 672-679 ◽  
Author(s):  
Wendy Duggleby ◽  
Dan Cooper ◽  
Cheryl Nekolaichuk ◽  
Laura Cottrell ◽  
Jenny Swindle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Thematic Analysis ◽  
Psychosocial Interventions ◽  
Positive Outcomes ◽  
Psychosocial Experiences ◽  
Psychosocial Processes ◽  
Palliative Patients

AbstractObjective:Several studies have reported the effectiveness of a variety of psychosocial interventions in increasing levels of hope in palliative care patients. The experience of palliative patients while participating in these interventions is unknown. Understanding these experiences would provide a rich understanding of how the interventions work to foster hope. The purpose of the present study was to describe the psychosocial processes that participants with advanced cancer receiving palliative care experienced when taking part in a Living with Hope Program (LWHP).Method:In the context of a study evaluating the LWHP, data were collected from 13 dyads (persons with advanced cancer and their caregivers) at two timepoints (one week apart). A thematic qualitative analysis of 52 open-ended audiotaped interviews was conducted that focused on the psychosocial processes that occurred during the LWHP.Results:The average age of palliative participants was 67 (SD = 6.6) and of their family caregivers 61 years of age (SD = 13.9). A thematic analysis suggested that the participants experienced the following psychosocial processes while participating in the LWHP: (1) reminiscing, (2) leaving a legacy, (3) positive reappraisal, and (4) motivational processes. These processes are the mechanisms by which the LWHP fosters the positive outcomes of increasing hope and improving quality of life. As well, the finding of motivational processes suggested that the LWHP may also increase life satisfaction, which is an outcome of motivational processes.Significance of the results:The findings from our study underscore the importance of uncovering the psychosocial processes through which the LWHP works to foster hope. They will assist in making revisions to the intervention that will increase its effectiveness, as well as providing a better understanding of hope in persons with advanced cancer.

scholarly journals A palliative care approach in psychiatry: clinical implications

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Mattias Strand ◽  
Manne Sjöstrand ◽  
Anna Lindblad
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Psychiatric Disorders ◽  
Patient Centeredness ◽  
Palliative Approach ◽  
Clinical Scenarios ◽  
Care Approach ◽  
Life Threatening ◽  
Treatment Refractory

Abstract Background Traditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely disabling, and potentially life-threatening nature of psychiatric disorders, there are neither palliative care units nor clinical guidelines on palliative measures for patients in psychiatry. Main text This paper contributes to the growing literature on a palliative approach in psychiatry and is based on the assumption that a change of perspective from a curative to a palliative approach could help promote patient-centeredness and increase quality of life for severely ill patients in psychiatry as well as in somatic medicine. To exemplify this, we offer three different clinical scenarios: severe and enduring anorexia nervosa, treatment-refractory schizophrenia, and chronic suicidality and persistent self-injury in borderline personality disorder. Conclusion We emphasize that many typical interventions for treatment-refractory psychiatric disorders may indeed be of a palliative nature. Furthermore, introducing traditional features of palliative care, e.g. so-called goals of care conversations, could aid even further in ensuring that caregivers, patients, and families agree on which treatment goals are to be prioritized in order to optimize quality of life in spite of severe, persistent mental disorder.

Palliative care and quality of life for people with dementia: medical and psychosocial interventions

2015 ◽  
Vol 27 (10) ◽  
pp. 1623-1634 ◽  
Author(s):  
Ladislav Volicer ◽  
Joyce Simard
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Psychosocial Interventions ◽  
Course Of Illness ◽  
Medical Interventions ◽  
People With Dementia ◽  
Dementing Illness ◽  
Definition Of ◽  
Severity Of Dementia

ABSTRACTBackground:Despite mounting evidence that principles of palliative care are appropriate in care for individuals with dementia they are often not applied. As a result, patients with dementia are often exposed to burdensome interventions that have little or no benefit and are not provided with psychosocial treatments.Methods:Recommendations for applying palliative care principles in caring for people with dementia are provided, based on the WHO definition of palliative care, our clinical experience and some key literature reports.Results:People with a diagnosis of an irreversible dementia such as Alzheimer's disease (AD) and their families are rarely informed that this is a terminal disease and palliative care principles are not discussed with them. They are applicable early in the course of illness when the person can still make end-of-life decisions. Palliative care can be used in conjunction with other therapies and services, such as hospice care that provide relief from pain and other distressing symptoms. The care should include keeping people with dementia involved in meaningful activities which decrease or eliminate behavioral symptoms of dementia.Conclusions:Educating families and professionals about palliative care is important as many professionals and non-professionals believe that this approach intends to hasten death, instead of affirming life and regarding dying as a normal process. Living, not just existing, with a dementing illness involves encouraging the person to continue to be involved in meaningful activities. Medical interventions should be compatible with goals of care and balance benefits and burdens for each intervention taking into consideration severity of dementia.

Clinical evaluation of the Mood and Symptom Questionnaire (MSQ) in a day therapy unit in a palliative support centre in the United Kingdom

2008 ◽  
Vol 6 (1) ◽  
pp. 51-59 ◽  
Author(s):  
Elizabeth Chapman ◽  
Judith Whale ◽  
Annette Landy ◽  
David Hughes ◽  
Margaret Saunders
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Care Center ◽  
Psychosocial Interventions ◽  
Physical Symptoms ◽  
Clinical Tool ◽  
Psychological Issues ◽  
Training Tool ◽  
Symptom Questionnaire

ABSTRACTObjective:To evaluate the use of the Mood and Symptom Questionnaire (MSQ) within a program of structured psychosocial interventions in a Supportive and Palliative Care Center. Palliative care patients have a range of psychological symptoms as well as physical symptoms. Considerable expertise in controlling pain and fear of pain, other physical symptoms, and psychosocial distress has been built up in hospices and palliative care units. This expertise can be used even at late stages in the patient's illness to improve quality of life.Method:We evaluated the usefulness of the MSQ to record patient responses, as an aid to patient/staff discussions, and as a staff-training tool. The questionnaire consisted of visual analog scales completed by the patient with a staff member present. Using the tool increased the opportunities for staff and patients todiscussproblematic psychosocial issues. Where possible, we obtained data at two time points and compared the responses.Results:The MSQ was rapidly accepted as a clinical tool in the day therapy setting by staff and the patients. Theprocessof completing the questionnaire encouraged patients to face and discuss difficult issues. Discussion of the issues raised on the questionnaire had a wider effect, influencing interactions and communications through the unit and facilitating wider discussion of other nonpain symptoms. The medical psychotherapist associated with the unit used the MSQ responses as a training tool to increase staff awareness and knowledge and understanding of psychological issues related to the patients' total pain experience by discussing the questionnaires with them.Significance of results:The use of this tool helped to identify some psychological issues that proved relatively straightforward to address once uncovered. Patients benefited from this opportunity when their remaining time was relatively short. Their quality of life at the end of their lives was improved.

scholarly journals Prognosis does not change the landscape: palliative home care clients experience high rates of pain and nausea, regardless of prognosis

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicole Williams ◽  
Kirsten Hermans ◽  
Tara Stevens ◽  
John P. Hirdes ◽  
Anja Declercq ◽  
...  
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Clinical Symptoms ◽  
Assessment Data ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
Significant Difference ◽  
Care Approach ◽  
Sectional Analysis

Abstract Background Most individuals who typically receive palliative care (PC) tend to have cancer and a relatively short prognosis (< 6 months). People with other life-limiting illnesses can also benefit from a palliative care approach. However, little is known about those who receive palliative home care in Ontario, Canada’s largest province. To address this gap, the goal of this project was to understand the needs, symptoms and potential differences between those with a shorter (< 6 months) and longer prognosis (6+ months) for individuals receiving PC in the community. Methods A cross-sectional analysis was conducted using interRAI Palliative Care (interRAI PC) assessment data collected between 2011 and 2018. Individuals with a shorter prognosis (< 6 months; n = 48,019 or 64.1%) were compared to those with a longer prognosis (6+ months; n = 26,945) across several clinical symptoms. The standardized difference (stdiff), between proportions, was calculated to identify statistically meaningful differences between those with a shorter and longer prognosis. Values of the stdiff of 0.2 or higher (absolute value) indicated a statistically significant difference. Results Overall, cancer was the most prevalent diagnosis (83.2%). Those with a shorter prognosis were significantly more likely to experience fatigue (75.3% vs. 59.5%; stdiff = 0.34) and shortness of breath at rest (22.1% vs. 13.4%; stdiff = 0.23). However, the two groups were similar in terms of severe pain (73.5% vs. 66.5%; stdiff = − 0.15), depressive symptoms (13.2% vs. 10.7%; stdiff = 0.08) and nausea (35.7% vs. 29.4%; stdiff = 0.13). Conclusions These results highlight the importance of earlier identification of individuals who could benefit from a palliative approach to their care as individuals with a longer prognosis also experience high rates of symptoms such as pain and nausea. Providing PC earlier in the illness trajectory has the potential to improve an individual’s overall quality of life throughout the duration of their illness.

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.

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