Issues related to providing quality pediatric palliative care in the community
Child; Humans; Pediatrics; Health; Insurance; Palliative Care/standards; Community Health Services/standards; Home Care Services/standards; Hospice Care/standards; Quality of Health Care/standards; Reimbursement
The medical practitioner in the community is in a unique position to assist children and their families from the time of diagnosis with a life-threatening condition through to the end of life. The purpose of this article is to inform medical practitioners who care for children with complex, chronic, and life-limiting conditions about pediatric palliative care in the community. It is intended as a guide to improve understanding about (1) the misconceptions and barriers surrounding the provision of care in the community for children with chronic, complex, and life-limiting conditions; (2) the availability of services for care in the community; (3) challenges concerning out-of hospital do-not-attempt-resuscitation orders for children; and (4) reimbursement issues that impact the provision of care.
2007
Carroll JM; Torkildson C; Winsness JS
Pediatric Clinics Of North America
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.06.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.06.002</a>
End-of-life content in treatment guidelines for life-limiting diseases
Humans; United States; Non-U.S. Gov't; Research Support; Palliative Care/standards; Chronic Disease/therapy; Disease Management; Terminal Care/standards; Hospice Care/standards; Practice Guidelines/standards
BACKGROUND: Clinical guidelines are systematically developed statements that influence medical practice, education, and funding. Guidelines represent the consensus of leaders, often based on systematic reviews of the literature, regarding the "state of the art." OBJECTIVE: To assess the degree to which end-of-life care is integrated into nationally developed guidelines for chronic, noncurable, life-limiting diseases. DESIGN: Four compendia were reviewed: The Healthcare Standards Directory ECRI, 2001; the Clinical Practice Guidelines Directory, 2000 edition; the National Guidelines Clearinghouse, (guideline.gov); and the National Library of Medicine's MEDLINE database on the OVID platform for guidelines on nine chronic diseases (chronic obstructive pulmonary disease, end-stage liver disease, amyotrophic lateral sclerosis, congestive heart failure, dementia, cerebrovascular accident, end-stage renal disease, cancer [breast, colon, prostate, lung], and human immunodeficiency virus). They were assessed by two reviewers for end-of-life content in 15 domains (e.g., epidemiology of death, symptom management, spiritual, family roles, and settings of care), the presence of eight specific terms dealing with palliative care, integration of palliative care information into the guideline, and descriptive variables. SETTING/SUBJECTS: Not available. MEASUREMENTS: Each guideline was examined and rated on a 0-2 scale (0, absent content; 1, minimal content; 2, helpful content) using 15 end-of-life content domains. Scores from domains were summed and classified into 3 categories: 4 or less, minimal; 5-12, moderate; and more than 12, significant content. Results: Ten percent of guidelines had significant palliative care content, 64% had minimal content, and 26% had moderate content. The least addressed domains dealt with spirituality, ethics, advocacy and family roles. When guidelines that dealt solely with prevention, acute exacerbations or complications of an illness, or specific treatment modalities were excluded 28% and 16% of these general guidelines (n = 58) had moderate and significant palliative care content, respectively, compared to 24% and 0% of all nongeneral guidelines. Similar results were found when analyzing the data by disease course or treatment focus. Only 14% of guidelines advised physicians to consider palliative care at a specific point in the disease course. Ninety-one percent of the guidelines mentioned death, dying, end of life, mortality, or terminal illness but only 36% mentioned palliation or hospice. CONCLUSION: Current national guidelines on nine chronic, life-limiting illnesses offer little guidance in end-of-life care issues despite a recent increase in attention to this aspect of medical care.
2004
Mast KR; Salama M; Silverman GK; Arnold RM
Journal Of Palliative Medicine
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2004.7.754" target="_blank" rel="noreferrer">10.1089/jpm.2004.7.754</a>
Palliative care: rapid redesign to support systemwide quality improvement
Humans; Leadership; Length of Stay; Program Development; Outcome Assessment (Health Care); Patient Satisfaction; Hospitals; Catholicism; Palliative Care/organization & administration; Family/psychology; Midwestern United States; Hospice Care/standards; Hospital Restructuring; Institutional Management Teams; Multi-Institutional Systems/organization & administration; Multi-Institutional Systems/standards; Palliative Care/standards; Practice Guidelines as Topic; Religious/organization & administration; Religious/standards; Total Quality Management/organization & administration
Large-scale change techniques and rapid redesign methodologies were used to improve the quality of care delivered to patients at the end of life in a large, multihospital healthcare delivery system. By bringing key stakeholders from across the system together at a symposium to formulate the vision and critical criteria for palliative care programs, as well as to develop a flexible set of design tools, each region in the system could respond to the unique needs of its own community. Hospice length of stay for the system improved by 100% in the year after the systemwide symposium.
2002
Thomas MB; Quinn C
Journal For Healthcare Quality
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/01445442-200201000-00006" target="_blank" rel="noreferrer">10.1097/01445442-200201000-00006</a>
Palliative and hospice care needed for children with life-threatening conditions
Child; United States; Practice Guidelines; Human; Pediatrics/standards; Hospice Care/standards; Palliative Care/standards
2000
Stephenson J
Journal Of The American Medical Association
2000
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Journal Article
Implementation and evaluation of a quality improvement process to improve pain management in a hospice setting
Program Development; Program Evaluation; Non-U.S. Gov't; Administration; retrospective studies; Human; Support; Nursing Audit; Hospice Care/standards; Outcome and Process Assessment (Health Care)/organization &; Pain/nursing; Total Quality Management/organization & administration
The purpose of this article is to describe the implementation and evaluation of a quality improvement process to improve pain management in a hospice setting. A retrospective chart audit of 702 patient visits pre- and 536 patient visits post-implementation of quality improvement strategies measured five aspects of pain management: complaints of pain, severity of pain, changes in patient's pain medication regime required, patient and family teaching, and use of complementary therapies. Of these measures a significant change was found in the documentation of pain assessment, recognition of changes required in the medication regime, and patient and family teaching.
1998
Duggleby W; Alden C
American Journal Of Hospice & Palliative Medicine
1998
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Journal Article
Relationships between symptom relief, quality of life, and satisfaction with hospice care
Female; Male; Pain Measurement; Cohort Studies; Prospective Studies; Aged; Outcome Assessment (Health Care); Australia; Non-U.S. Gov't; P.H.S.; U.S. Gov't; Human; quality of life; Patient Satisfaction; Support; Patient Care; Hospice Care/standards
Hospices were founded to alleviate suffering at the end of life. Quality improvement in hospices should, therefore, target patients' subjective assessments of their care and its outcomes. However, little is known about the relationships among subjective measures of care among hospice patients. The aim was to assess the relationships between hospice patients' physical and psychological symptoms, quality of life, and satisfaction with inpatient care. This was achieved with a prospective cohort study of 42 patients admitted to an Australian hospice's inpatient service during a two-month study period. The Edmonton symptom assessment system, McGill quality of life questionnaire, and a new measure of patients satisfaction with hospice inpatient care were used. It was shown that while there were marked variations in symptoms and quality of life scores, most patients were satisfied with their care. Satisfaction on the day after admission was lower among patients with worse quality of life scores (r = -0.40, P = 0.008), but there was no correlation with symptoms (r = -0.12, P = 0.43). Among the 26 patients (62%) with at least one subsequent inpatient interview, satisfaction was correlated with both worse quality of life (r = -0.51, P = 0.01) and symptoms (r = -0.41, P = 0.05). The symptom, quality of life, and satisfaction scales all had sufficient precision to identify patients with significant changes between the two interviews. It can be concluded that satisfaction with hospice care was associated with quality of life more than symptoms, although symptoms became important later during inpatient stays. Patients can assess their care and can provide valuable information for improving palliative care.
1998
Tierney RM; Horton SM; Hannan TJ; Tierney WM
Palliative Medicine
1998
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Journal Article
Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates
Female; Humans; Male; Young Adult; Adult; Aged; Middle Aged; Pilot Projects; Feasibility Studies; Australia; Urinary Retention; 80 and over; retrospective studies; Palliative Care/standards; Hospice Care/standards; Accidental Falls; Confusion; Hyperglycemia; Hypoglycemia; Hypotension
BACKGROUND: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are mostly attributed to disease progression. OBJECTIVES: The aim of this study was to assess the feasibility of symptomatic adverse events in hospice and palliative care and assessing their incidence. METHODS: A retrospective, consecutive cohort of notes from a specialist palliative care inpatient service was surveyed by a clinical nurse consultant for symptomatic adverse events: falls, confusion, decreased consciousness, hypo- and hyperglycaemia, urinary retention, and hypotension. Demographic and clinical factors were explored for people at higher risk. RESULTS: Data were available on the most recent admissions of 65 people, generating >900 inpatient days. Fifty people (78%) had events precipitating admission, of whom 31 (62%) had at least one further event during admission. Eleven of 15 people who were admitted without an event experienced at least one during their admissions. Only 4 did not have an adverse event. During their stay, there were 0.13 (standard deviation [SD] = 0.19) events per patient per day. No drug-drug or drug-host events were noted. No clinical or demographic factors predicted groups at higher risk. CONCLUSIONS: This pilot highlights the feasibility of collecting, and ubiquity of, symptomatic adverse events, and forms a baseline against which future interventions to decrease the frequency or intensity can be measured. Given the frailty of hospice and palliative patients, any adverse event is likely to accelerate irreversibly their systemic decline.
Currow DC; Agar MR; To TH; Rowett D; Greene A; Abernethy AP
Journal Of Palliative Medicine
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2010.0392" target="_blank" rel="noreferrer">10.1089/jpm.2010.0392</a>
“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.
Adolescent; Child; Clinical Competence/standards; Education Medical/standards; Female; Focus Groups; Health Services Research; Hospice Care/standards; Humans; Male; Pediatrics/education; Pediatrics/standards; Physician-patient Relations
Education And Training; Hospice Care; Pediatrics; Palliative Care; Qualitative Research
Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical education of children and parents using hospice services has not yet been fully explored.
OBJECTIVES:
(1) To explore perceptions of what medical students must learn to become 'good doctors' among children, parents and staff in a hospice. (2) To collaborate with children/parents and staff to develop educational materials based on their lived experiences for medical students. (3) To assess feasibility of student-led action research in a children's hospice to develop research skills.
METHODS:
Prospective ethical approval received. Volunteer children (n=7), parents (n=5) and staff (n=6) were recruited from a children's hospice. Data were generated in audio-recorded semistructured focus groups, individual interviews and/or activity workshops. Participants discussed what newly qualified doctors' needed to care for children with life-limiting conditions. Audio data were transcribed and combined with visual data for thematic analysis. Findings were refined by participant feedback. This paper presents thematic findings and educational material created from the project.
RESULTS:
Thematic analysis identified six learning themes: (1) treat children as individuals; (2) act as a person before being a doctor; (3) interpersonal communication; (4) appreciate the clinical environment; (5) learn from children, parents and other staff; (6) how to be a doctor as part of a team. The student researcher successfully developed qualitative research skills, coproducing materials with participants for sharing learning derived from lived experiences.
CONCLUSIONS:
All participants were willing and able to make valuable contributions, and believed that this was a worthwhile use of time and effort. Further work is required to understand how best to integrate the experiences of children in hospices into medical education.
Spalding J; Yardley S
Bmj Supportive & Palliative Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).