Hospices and palliative care for children: converging stories

2019 ◽  
Vol 130 (1) ◽  
pp. 81-88 ◽  
Author(s):  
Richard D W Hain
Keyword(s):  
Palliative Care ◽  
Palliative Medicine ◽  
Healthcare Providers ◽  
Specialist Palliative Care ◽  
Funding Formula ◽  
Published Research ◽  
Local Healthcare

Abstract Introduction Children’s hospices offer support to children and their families according to a model that is quite different from adult hospices and has evolved in parallel with specialist paediatric palliative medicine services. Sources of data Published research, Together for Short Lives. Areas of agreement The services hospices offer are highly valued by families. Areas of controversy It is not always clear that hospices can be described as ‘specialist’, which can make it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector. Growing points Children’s palliative care generally is poorly developed compared with the adult specialty, and local providers should work with hospices to help redress the inequity that children face in accessing specialist palliative care. Areas timely for developing research If hospices are to continue to be important providers of palliative care in children they must develop robust and fair relationships with local healthcare providers. That would be facilitated by development of a funding formula for children that properly acknowledges the part hospices already play in palliative care.

Trends in Published Palliative Care Research: A 15-Year Review

2020 ◽  
pp. 104990912094486
Author(s):  
Ambereen K. Mehta ◽  
Rishi Patel ◽  
Dheer Patel ◽  
Mellar P. Davis
Keyword(s):  
Palliative Care ◽  
Symptom Management ◽  
Palliative Medicine ◽  
The United States ◽  
Management Journal ◽  
Time Points ◽  
Professional Degree ◽  
Study Type ◽  
The Impact ◽  
Published Research

Background: There has been a call for palliative care (PC) published research to support the impact and need for more specialty PC services. Objective: The purpose of this study was to characterize research in PC over a 15-year period in 3 PC journals published in the United States. Design: The authors reviewed every issue of the Journal of Pain and Symptom Management, Journal of Palliative Medicine, and American Journal of Hospice and Palliative Medicine from 2004 through 2018. Studies included were original articles and brief reports. Study type (qualitative, quantitative), author (first and last), gender, and professional degree of the author (first and last) were recorded. Results: A total of 4881 articles were included in this study. The proportion of quantitative papers significantly increased across 3 time points from 63% to 67% to 78%. The proportion of women first authors increased across all 3 time points (54%, 2004-2008; 57%, 2009-2013; 60%, 2014-2018), and the proportion of women last authors increased across all time points (38%, 2004-2008; 44%, 2009-2013; 46%, 2014-2018). More than 40% of authors were physicians. Conclusions: Published PC studies are increasingly quantitative in design. Gender authorship is female dominant for the first authors and increasingly equal across genders for the last authors.

scholarly journals Specialist palliative medicine physicians and nurses accuracy at predicting imminent death (within 72 hours): a short report

2020 ◽  
Vol 10 (2) ◽  
pp. 209-212
Author(s):  
Nicola White ◽  
Fiona Reid ◽  
Victoria Vickerstaff ◽  
Priscilla Harries ◽  
Patrick Stone
Keyword(s):  
Palliative Care ◽  
Palliative Medicine ◽  
Prospective Observational Study ◽  
Secondary Data ◽  
Palliative Care Team ◽  
Terminal Phase ◽  
Short Report ◽  
Specialist Palliative Care ◽  
Imminent Death ◽  
The Difference

ObjectivesResearch suggests that clinicians are not very accurate at prognosticating in palliative care. The ‘horizon effect’ suggests that accuracy ought to be better when the survival of patients is shorter. The aim of this study was to determine the accuracy of specialist palliative care clinicians at identifying which patients are likely to die within 72 hours.DesignIn a secondary data analysis of a prospective observational study, specialist palliative care doctors and nurses (in a hospice and a hospital palliative care team) provided survival predictions (yes/no/uncertain) about which patients would die within 72 hours.ResultsSurvival predictions were obtained for 49 patients. A prediction from a nurse was obtained for 37/49 patients. A prediction from a doctor was obtained for 46/49 patients. In total, 23 (47%)/49 patients actually died within 72 hours of assessment. Nurses accurately predicted the outcome in 27 (73%)/37 cases. Doctors accurately predicted the outcome in 30 (65%)/46 cases. When comparing predictions given on the same patients (27 [55%]/49), nurses were slightly better at recognising imminent death than doctors (positive predictive value (the proportion of patients who died when the clinician predicted death)=79% vs 60%, respectively). The difference in c-statistics (nurses 0.82 vs doctors 0.63) was not significant (p=0.13).ConclusionEven when patients are in the terminal phase and close to death, clinicians are not very good at predicting how much longer they will survive. Further research is warranted to improve prognostication in this population.

Healthcare providers’ views and experiences of non-specialist palliative care in hospitals: A qualitative systematic review and thematic synthesis

2020 ◽  
Vol 34 (5) ◽  
pp. 605-618 ◽  
Author(s):  
Mary Nevin ◽  
Geralyn Hynes ◽  
Valerie Smith
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Acute Care ◽  
Care Delivery ◽  
Healthcare Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Thematic Synthesis ◽  
Qualitative Systematic Review ◽  
Palliative Care Needs

Background: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients’ disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed. Aim: To synthesise the evidence on healthcare providers’ views and experiences of non-specialist palliative care in hospitals. Design: A qualitative systematic review and thematic synthesis using Thomas and Harden’s thematic synthesis framework. Data sources: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers’ views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews. Results: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers’ views and experiences. Four major analytical themes emerged; ‘Understanding of Palliative Care’, ‘Complexities of Communication’, ‘Hospital Ecosystem’ and ‘Doctors and Nurses – a Different Lens’. Conclusions: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals.

Tinjauan sistematis: Efektifitas Palliative Home Care untuk Pasien dengan HIV/AIDS

1970 ◽  
Vol 5 (1) ◽  
Author(s):  
Linlin Lindayani ◽  
Nenden Nur Asriyani Maryam
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Palliative Medicine ◽  
Cochrane Library ◽  
Palliative Home Care ◽  
Hiv Aids

Asuhan palitif untuk pasien dengan HIV/AIDS merupakan elemen inti dari asuhan pasien dengan HIV/AIDS. Asuhan paliatif yang berbasis home care saat ini menjadi elemen penting yang digunakan di berbagainegara. Akan tetapi, tidak ada studi atau tinjauan sebelumnya yang menganalisis efektifitas dari asuhanpaliatif yang berbasis home care pada pasien dengan HIV/AIDS. Tujuan dari tinjauan sistematik ini adalahuntuk mengevaluasi efektivitas Palliative Home Care untuk pasien dengan HIV/AIDS terhadap nyeri,pengendalian gejala, meningkatkan kualitas hidup, meningkatkan kepuasan asuhan, dan efektivitas biaya.Pencarian awal terbatas dilakukan di MEDLINE dan CINAHL. Kedua database tersebut dipilih denganpertimbangan bahwa keduanya merupakan database terbesar di bidang kesehatan dan kedokteran. Kemudiastrategi pencarian lainnya dilakukan pada database lain meliputi: Cochrane Library, UpToDate, Ovid, AIDSCare, Journal of Palliative Care, dan Journal of Palliative Medicine. Studi yang diterbitkan dalam Bahasa Inggrisdan tahun 2000-2016 dipertimbangkan untuk dimasukkan dalam tinjauan ini. Data diekstrak oleh penulis dandiringkas menggunakan alat ekstraksi data dari JBI (Joanna Briggs Institute). Kami menemukan 4 studi yangmasuk kedalam kriteria tinjauan kami, satu studi randomizes control trial dan tiga studi prospectively control.Hasil dari tinjauan ini menunjukkan bahwa Palliative Home Care terbukti efektif dalam mengontol nyeridan gejala-gelaja lain, mempertahankan dan meningkatkan kualitas hidup pasien, tingginya kepuasan daripasien dan kelurga terhadap asuhan Palliative Home Care berkisar 93% - 96% dan lebih cost-effectivenessdibandingkan dengan Hospital-Based Palliative Care. Dengan demikian, penting untuk mengembangkanPalliative Home Care untuk pasien dengan HIV/AIDS terutama untuk negara dengan sumber daya yang terbatas.

Images of the Hospice

2017 ◽  
Author(s):  
Alan Baron ◽  
John Hassard ◽  
Fiona Cheetham ◽  
Sudi Sharifi
Keyword(s):  
General Public ◽  
Palliative Medicine ◽  
Healthcare Professionals ◽  
Hospice Care ◽  
Care Work ◽  
Dirty Work ◽  
Key Stakeholders ◽  
Host Organization ◽  
Local Healthcare

This chapter looks ‘outside’ the Hospice at issues of the organization’s image. The authors talked to staff, volunteers, and members of the general public, as well as to a number of key stakeholders in the local healthcare community, in order to gauge their views on the host organization. The analysis examines the problems associated with the image of hospices and discusses attempts of staff and volunteers to ‘dispel the myths’ about the nature of hospice care work—a form of labour which potentially runs the risk of being characterized as ‘dirty work’. The chapter then examines how the Hospice is seen in the eyes of other healthcare professionals and discusses the choice of palliative medicine as a career for junior medics. Finally it discusses a degree of ‘confusion’ that staff and volunteers claim exists in the minds of GPs and consultants in specialist cancer hospitals about the role of hospices.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

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