scholarly journals National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project

2022 ◽  
Vol 21 (1) ◽  
Author(s):  
C. Bausewein ◽  
F. Hodiamont ◽  
N. Berges ◽  
A. Ullrich ◽  
C. Gerlach ◽  
...  

Abstract Background In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program ‘Palliative care in Pandemics’ (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). Methods Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. Discussion For a future “pandemic preparedness” national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

Author(s):  
Robert M. Arnold

Despite the growth of specialty palliative care over the past twenty years, the experience of most seriously ill patients in America has not changed. Although some have argued that the solution to this problem is to increase specialist palliative care (SPC), the author argues that this is a mistake. The growth of SPC may distract attention from solutions that are more likely to improve care for most seriously ill patients. SPC may decrease the quality and quantity of palliative care provided by nonspecialists by allowing the health care system to continue to deny death and “ghetto-izing” and deskilling generalist palliative care. This chapter presents these two arguments and tries to determine what changes are required to ensure that all seriously ill patients receive good palliative care, regardless of who provides the care.


2019 ◽  
Vol 33 (8) ◽  
pp. 1114-1124 ◽  
Author(s):  
Alice M Firth ◽  
Suzanne M O’Brien ◽  
Ping Guo ◽  
Jane Seymour ◽  
Heather Richardson ◽  
...  

Background: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care. Aim: To identify the core components that characterise and differentiate existing models of specialist palliative care in the United Kingdom. Design: Mixed-methods study: (1) semi-structured interviews to identify criteria, (2) two-round Delphi study to rank/refine criteria, and (3) structured interviews to test/refine criteria. Setting/participants: Specialist palliative care stakeholders from hospice inpatient, hospital advisory, and community settings. Results: (1)  Semi-structured interviews with 14 clinical leads, from eight UK organisations (five hospice inpatient units, two hospital advisory teams, five community teams), provided 34 preliminary criteria. (2)  Delphi study: Round 1 (54 participants): thirty-four criteria presented, seven removed and seven added. Round 2 (30 participants): these 34 criteria were ranked with the 15 highest ranked criteria, including setting, type of care, size of service, diagnoses, disciplines, mode of care, types of interventions, ‘out-of-hours’ components (referrals, times, disciplines, mode of care, type of care), external education, use of measures, bereavement follow-up and complex grief provision. (3)  Structured interviews with 21 UK service leads (six hospice inpatients, four hospital advisory and nine community teams) refined the criteria from (1) and (2), and provided four further contextual criteria (team purpose, funding, self-referral acceptance and discharge). Conclusion: In this innovative study, we derive 20 criteria to characterise and differentiate models of specialist palliative care – a major paradigm shift to enable accurate reporting and comparison in practice and research.


2017 ◽  
Vol 103 (6) ◽  
pp. F573-F576 ◽  
Author(s):  
Des L McMahon ◽  
Marie Twomey ◽  
Maeve O’Reilly ◽  
Mary Devins

ObjectiveTo analyse the referral patterns of perinatal patients referred to a specialist palliative care service (SPCS), their demographics, diagnoses, duration of illness, place of death and symptom profile.DesignA retrospective chart review of all perinatal referrals over a 4-year period to the end of 2015.SettingA consultant-led paediatric SPCS at Our Lady’s Children’s Hospital, Crumlin, Dublin, and the Coombe Women & Infants University Hospital, Dublin.Results83 perinatal referrals were received in a 4-year period. Chromosomal abnormalities accounted for 35% of diagnoses, congenital heart disease 25%, complex neurological abnormalities 11% and renal agenesis 4%. 22 referrals (26.5%) were made antenatally, with 61 (73.5%) postnatally. Of the postnatal referrals, 27 (44%) were asymptomatic on referral. An opioid medication was recommended (regularly or as required) in 46 cases. Symptom control was achieved without dose titration in 43 of these cases (93%). Of 47 deaths in this group referred postnatally, 22 of these (47%) died at home with support from community teams. Discharge home for best supportive care required complex interagency communication and cooperation.ConclusionsPerinatal palliative care requires effective multidisciplinary work, whether delivered in the inpatient setting or in the community. With appropriate support, end-of-life care can be delivered in the community.


2016 ◽  
Vol 19 (7) ◽  
pp. 720-727 ◽  
Author(s):  
Leanne Monterosso ◽  
Gail M. Ross-Adjie ◽  
Ian R. Rogers ◽  
Freya M. Shearer ◽  
Jeremy R. Rogers

Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.


2006 ◽  
Vol 4 (1) ◽  
pp. 13-24 ◽  
Author(s):  
SHANE SINCLAIR ◽  
SHELLEY RAFFIN ◽  
JOSE PEREIRA ◽  
NANCY GUEBERT

Objective:Although spirituality as it relates to patients is gaining increasing attention, less is known about how health care professionals (HCP) experience spirituality personally or collectively in the workplace. This study explores the collective spirituality of an interdisciplinary palliative care team, by studying how individuals felt about their own spirituality, whether there was a shared sense of a team spirituality, how spirituality related to the care the team provided to patients and whether they felt that they provided spiritual care.Methods:A qualitative autoethnographic approach was used. The study was conducted in a 10-bed Tertiary Palliative Care Unit (TPCU) in a large acute-care referral hospital and cancer center. Interdisciplinary team members of the TPCU were invited to participate in one-to-one interviews and/or focus groups. Five interviews and three focus groups were conducted with a total of 20 participants.Results:Initially participants struggled to define spirituality. Concepts of spirituality relating to integrity, wholeness, meaning, and personal journeying emerged. For many, spirituality is inherently relational. Others acknowledged transcendence as an element of spirituality. Spirituality was described as being wrapped in caring and often manifests in small daily acts of kindness and of love, embedded within routine acts of caring. Palliative care served as a catalyst for team members' own spiritual journeys. For some participants, palliative care represented a spiritual calling. A collective spirituality stemming from common goals, values, and belonging surfaced.Significance of results:This was the first known study that focused specifically on the exploration of a collective spirituality. The culture of palliative care seems to foster spiritual reflection among health care professionals both as individuals and as a whole. While spirituality was difficult to describe, it was a shared experience often tangibly present in the provision of care on all levels.


2010 ◽  
Vol 71 (9) ◽  
pp. 1687-1691 ◽  
Author(s):  
Kevin Brazil ◽  
Sharon Kassalainen ◽  
Jenny Ploeg ◽  
Denise Marshall

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