Perinatal palliative care

Perinatal palliative care (PNPC) is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialized support to families from diagnosis through to birth, death, and bereavement. This chapter aims to address the challenging clinical, ethical, and practical issues specific to perinatal palliative care. It describes antenatal life-limiting diagnoses, the role of anticipatory bereavement care, a palliative care approach to pregnancy, and outlines the complex planning and models of care required to optimally provide for the baby, mother, and family throughout. This chapter ultimately aims to provide management strategies to guide multidisciplinary teams (MDT) to deliver high-quality PNPC to the family as a whole.

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Upside down solutions: palliative care and COVID-19

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002385 ◽

2020 ◽

pp. bmjspcare-2020-002385 ◽

Cited By ~ 1

Author(s):

Daniel Knights ◽

Felicity Knights ◽

Iain Lawrie

Keyword(s):

Palliative Care ◽

Symptom Control ◽

Well Being ◽

Models Of Care ◽

Resource Limited ◽

Relief Of Suffering ◽

Complex Decision Making ◽

Complex Decision ◽

Effective Use

The current COVID-19 pandemic is unprecedented and requires innovation beyond existing approaches to contribute to global health and well-being. This is essential to support the care of people at the end of their lives or who are critically ill from COVID-19 or other life-limiting illnesses. Palliative care (PC) is centred on effective symptom control, promotion of quality of life, complex decision-making, and holistic care of physical, psychological, social and spiritual health. It is ideally placed to both provide and contribute to care for patients, families, communities and colleagues during the pandemic. Where recovery is uncertain, emphasis should be on care and relief of suffering, as well as survival. Where healthcare resources and facilities come under intense pressure, lessons can be learnt from models of care in other settings around the world. This article explores how the field can contribute by ensuring that PC principles and practices are woven into everyday healthcare practice. We explore alternative ways of providing care under such pressure and discuss three areas of learning from resource-limited settings: (1) integration of palliative medicine into everyday practice, (2) simplification of biomedical management plus multidisciplinary teamwork and (3) effective use of volunteers.

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

Indian Journal of Palliative Care ◽

10.25259/ijpc_414_20 ◽

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.

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Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review

Paediatrics & Child Health ◽

10.1093/pch/pxz089 ◽

2019 ◽

Author(s):

Megan E Doherty ◽

Liam Power ◽

Robin Williams ◽

Nahal Stoppels ◽

Lynn Grandmaison Dumond

Keyword(s):

Palliative Care ◽

Chart Review ◽

Retrospective Chart Review ◽

Care Program ◽

Trisomy 13 ◽

Future Research ◽

Factors Affecting ◽

Paediatric Palliative Care ◽

Perinatal Palliative Care ◽

Limiting Condition

Abstract Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.

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Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents—What Clinicians Need to Know

Frontiers in Pediatrics ◽

10.3389/fped.2021.597519 ◽

2021 ◽

Vol 9 ◽

Author(s):

Victoria J. Kain

Keyword(s):

Palliative Care ◽

Review Article ◽

Religious Leaders ◽

Inclusion Criteria ◽

Fetal Diagnosis ◽

Religious Dimensions ◽

Perinatal Palliative Care ◽

Limiting Condition ◽

Perinatal Hospice ◽

Religious Considerations

For perinatal palliative care (PPC) to be truly holistic, it is imperative that clinicians are conversant in the cultural, spiritual and religious needs of parents. That cultural, spiritual and religious needs for parents should be sensitively attended to are widely touted in the PPC literature and extant protocols, however there is little guidance available to the clinician as to how to meet these needs. The objective of this review article is to report what is known about the cultural, spiritual and religious practices of parents and how this might impact neonates who are born with a life-limiting fetal diagnosis (LLFD). The following religions will be considered—Islam, Buddhism, Hinduism, Judaism, and Christianity—in terms of what may be helpful for clinicians to consider regarding rituals and doctrine related to PPC. Data Sources include PubMed, Ovid, PsycInfo, CINAHL, and Medline from Jan 2000–June 2020 using the terms “perinatal palliative care,” “perinatal hospice,” “cultur*,” and “religiou*.” Inclusion criteria includes all empirical and research studies published in English that focus on the cultural and religious needs of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or had received perinatal palliative care. Gray literature from religious leaders about the Great Religions were also considered. Results from these sources contributing to the knowledge base of cultural, spiritual and religious dimensions of perinatal palliative care are considered in this paper.

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Present and Future of Parkinson’s Disease in Spain: PARKINSON-2030 Delphi Project

Brain Sciences ◽

10.3390/brainsci11081027 ◽

2021 ◽

Vol 11 (8) ◽

pp. 1027

Author(s):

Diego Santos García ◽

Marta Blázquez-Estrada ◽

Matilde Calopa ◽

Francisco Escamilla-Sevilla ◽

Eric Freire ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

New Technologies ◽

Management Strategies ◽

Multidisciplinary Teams ◽

Modified Delphi ◽

Advanced Stages ◽

Diagnostic Capacity ◽

Socio Economic Impact

Parkinson’s disease (PD) is a chronic progressive and irreversible disease and the second most common neurodegenerative disease worldwide. In Spain, it affects around 120.000–150.000 individuals, and its prevalence is estimated to increase in the future. PD has a great impact on patients’ and caregivers’ lives and also entails a substantial socioeconomic burden. The aim of the present study was to examine the current situation and the 10-year PD forecast for Spain in order to optimize and design future management strategies. This study was performed using the modified Delphi method to try to obtain a consensus among a panel of movement disorders experts. According to the panel, future PD management will improve diagnostic capacity and follow-up, it will include multidisciplinary teams, and innovative treatments will be developed. The expansion of new technologies and studies on biomarkers will have an impact on future PD management, leading to more accurate diagnoses, prognoses, and individualized therapies. However, the socio-economic impact of the disease will continue to be significant by 2030, especially for patients in advanced stages. This study highlighted the unmet needs in diagnosis and treatment and how crucial it is to establish recommendations for future diagnostic and therapeutic management of PD.

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Physicians’ decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015

BMC Palliative Care ◽

10.1186/s12904-021-00811-5 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Saila Haapasalmi ◽

Reetta P. Piili ◽

Riina Metsänoja ◽

Pirkko-Liisa I. Kellokumpu-Lehtinen ◽

Juho T. Lehto

Keyword(s):

Decision Making ◽

Palliative Care ◽

Legal Protection ◽

Postal Survey ◽

Advanced Dementia ◽

Background Factors ◽

Physician Decision Making ◽

Care Approach ◽

Life Threatening ◽

The Impact

Abstract Background Physicians’ decision-making for seriously ill patients with advanced dementia is of high importance, especially as the prevalence of dementia is rising rapidly, and includes many challenging ethical, medical and juridical aspects. We assessed the change in this decision-making over 16 years (from 1999 to 2015) and several background factors influencing physicians’ decision. Methods A postal survey including a hypothetical patient-scenario representing a patient with an advanced dementia and a life-threatening gastrointestinal bleeding was sent to 1182 and 1258 Finnish physicians in 1999 and 2015, respectively. The target groups were general practitioners (GPs), surgeons, internists and oncologists. The respondents were asked to choose between several life-prolonging and palliative care approaches. The influence of physicians’ background factors and attitudes on their decision were assessed. Results The response rate was 56%. A palliative care approach was chosen by 57 and 50% of the physicians in 1999 and 2015, respectively (p = 0.01). This change was statistically significant among GPs (50 vs 40%, p = 0.018) and oncologists (77 vs 56%, p = 0.011). GPs chose a palliative care approach less often than other responders in both years (50 vs. 63% in 1999 and 40 vs. 56% in 2015, p < 0.001). In logistic regression analysis, responding in 2015 and being a GP remained explanatory factors for a lower tendency to choose palliative care. The impact of family’s benefit on the decision-making decreased, whereas the influence of the patient’s benefit and ethical values as well as the patient’s or physician’s legal protection increased from 1999 to 2015. Conclusions Physicians chose a palliative care approach for a patient with advanced dementia and life-threatening bleeding less often in 2015 than in 1999. Specialty, attitudes and other background factors influenced significantly physician decision-making. Education on the identification and palliative care of the patients with late-stage dementia are needed to make these decisions more consistent.

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Palliative care referral practices and perceptions: The divide between metropolitan and non-metropolitan general practitioners

Palliative & Supportive Care ◽

10.1017/s1478951511000058 ◽

2011 ◽

Vol 9 (2) ◽

pp. 181-189 ◽

Cited By ~ 13

Author(s):

Claire E. Johnson ◽

Afaf Girgis ◽

Christine L. Paul ◽

David C. Currow

Keyword(s):

Palliative Care ◽

General Practitioners ◽

Advanced Cancer ◽

Terminal Illness ◽

Symptom Control ◽

Physical Symptoms ◽

Care Physician ◽

Self Report ◽

Psychosocial Needs ◽

Consultative Service

AbstractObjective:Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).Method:Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.Results:Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.Significance of results:Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

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