6675 Collaborative management of suspected anencephaly as part of perinatal palliative care

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

San Diego Hospice and the Institute for Palliative Medicine created one of the earliest perinatal palliative care programs in the country. Only four studies have reported outcomes for pregnant women referred to perinatal palliative care services for potentially lethal prenatal diagnoses. To learn: (1) who is referred for perinatal palliative care at San Diego Hospice; (2) what happens after referral to perinatal palliative care; and (3) what happens after delivery for this population. This was an exploratory retrospective electronic chart review of all patients referred to a home perinatal palliative program. Sixty-six women were referred to the San Diego Hospice and the Institute for Palliative Care home perinatal palliative care program between October 2006 and August 2012. Mean age was 31 years. The majority of women were Hispanic, Christian/Catholic, married, with full prenatal care, and previous children. Average gestational age at referral was 27 (18-39] weeks. Thirty-two cases were referred for Trisomy 13, Trisomy 18, or anencephaly. Palliative care services were given over a mean 45 (0-132) days and 3 (0-12) visits prior to delivery. Most women completed a birth plan prior to delivery, chose palliative treatment only, and made final arrangements with the palliative team. Forty-one deliveries resulted in a liveborn infant. Twelve liveborn infants survived past 72 hours and were admitted to pediatric hospice care. One-third of women met with the palliative care team only once or twice prior to delivery, indicating a need for earlier referral to provide more comprehensive palliative care.

To identify the attitudes, knowledge and practices regarding advance care planning (ACP) in palliative care. A nationwide online survey was distributed to Australian palliative care services associated with the Palliative Care Outcomes Collaboration (n=105). Seventy-three health professionals (HPs) and 59 service managers completed the survey. Regarding ACP, 51% of service managers reported relevant policies and procedures were in place in their service and 44% included ACP in job descriptions. Most HPs were confident in undertaking ACP, including initiating discussions with patients and complying with documents; however, only 44% reported receiving ACP specific training. Although 58% of HPs reported having conversations about ACP with more than 11 patients in the past 6 months, only 44% of managers report that it is offered to most patients. Thirty per cent of HPs were aware of others not adhering to patient wishes in the past 6 months and only 43% of HPs (and 37% of managers) believed ACP is done well within their service. This first national survey examining ACP in palliative care services demonstrates there is a need to improve systems to support ACP and to understand circumstances in which ACP wishes are not followed.

<h3>Background</h3> Patients with end-stage liver disease (ESLD) are an underserved population, with a high symptom and caregiver burden, who commonly die in hospital. Data suggests ESLD typically makes up 1% of a hospital based palliative care service (PCS) caseload(1). <h3>Method</h3> We describe an innovative service development aiming to improve palliative care provision in ESLD, within a single UK centre providing tertiary level hepatology care, through: • Identification of palliative care need through routine PCS attendance of weekly hepatology departmental grand round • Earlier holistic assessment by PCS • Implementation of a monthly combined hepatology-PCS MDT meeting <h3>Results</h3> 44 patients were reviewed by the PCS over a 6 month period (April-September 2025), making up almost 10% of referrals to this hospital-based PCS over the time period (44/467). • 36 (82%) were seen as inpatients and 8 as outpatients • Median age was 64 years(range 34-94) • Following holistic PCS assessment of the 36 inpatients: o 16 (44%) died in hospital o 10 (28%) were discharged home o 5 (14%) were discharged to hospice o 4 (11%) were discharged to a care home o 1 (3%) was discharged from ongoing PCS review • Of the 14 patients discharged home or to a care home: o 13/14 (93%) had a DNACPR decision documented o 10/14 (71%) had an Emergency Health Care Plan (established regional document) o 10/14 (71%) had advance care planning (ACP) discussions documented on PCS discharge letter o 1 declined ACP discussions • Preferred place of care was identified for 83% (30/36) inpatients assessed and achieved in 26/30 (87%). • When preferred place of death was known, it was achieved in 75% deaths (n=24). <h3>Conclusion</h3> This service development has markedly improved identification of patients with ESLD and palliative care need, rates of holistic assessment and ACP. There remains a need to identify patients with ESLD earlier in their disease trajectory.

Advanced Care Planning and Palliative Care in the Heart Failure Population

Introduction It is well recognised that patients with Parkinson’s disease (PD) have significant symptom burden in advanced stages of their disease. Integration of movement disorder and palliative care services has been limited by concerns about resource and sustainability. We present our experience of establishing a movement disorders palliative care multidisciplinary meeting. Method In 2019 we established a multidisciplinary virtual bimonthly meeting between movement disorders and palliative care specialists. Referrals were accepted from movement disorder specialists, community Parkinson’s practitioners and palliative care specialists. Referring clinicians all actively applied primary palliative care approaches within their existing services. Aims of the meeting were to facilitate holistic management of complex needs, support advance care planning (ACP) and consider referral to specialist palliative care services. Result 37 patients in total were discussed over a 2-year period (although the service was limited for a time due to COVID pressures). On average 3 new patients were discussed per meeting. Reasons for referral included motor and non-motor symptoms, support with ACP, medication advice, caregiver concerns and emotional distress. Meeting outcomes included medication adjustments, expediting reviews, hospice support, carer support, and referral to other services. Since the meetings started 23 (62%) patients have died. Of these, 30% died in hospital compared with the national average of 43.4%. The average between discussion at the meeting and death was 139 days. The meeting has generated education opportunities, triggered joint assessments and a professionals’ framework for the palliative management of patients with a movement disorder. Conclusions We present the experience of an MDT embedded within an early integrated palliative care service for movement disorders. The MDT has strengthened partnership working and findings suggest that alongside active primary palliative care, specialist palliative care for PD can be sustainable and resource efficient in a UK setting.

Public Awareness and Perceptions of Palliative and Comfort Care

Compassionate Technology: Palliative Care Telemedicine in the Rural Hospital Setting (QI741)

The report by Morita et al regarding late referrals to specialized palliative care services in Japan provides a unique perspective on this topic, with great significance to other countries. The primary end point of the study was the bereaved family members’ perceptions of the appropriateness of the timing of referrals of patients to palliative care units. Previous literature has primarily measured the effectiveness of palliative care referrals from the perspective of the primary care physician. It is of value to address this question from the perspective of family caregivers, as those truly most impacted by these referral patterns. Previous literature has documented late referrals to hospice or palliative care services as being attributable to physicians wanting to avoid referring patients to palliative care “too early.” Oncology settings echo the beliefs of “it’s not time” or “we’re not ready for that yet.” This reluctance is commonly expressed by patients, family caregivers, and primary care providers in cancer care and other serious illnesses. The families in this study who perceived referrals as having come early or very early were so few that they were excluded from the final analysis. The data reported by these authors is not dissimilar to the situation in the United States, where the average length of stay in hospice is 50 days, and median stay is only 21 days. The National Hospice and Palliative Care Organization reported in 2002 that 34.7% of those served by hospice died within 7 days or less of referral. One can well imagine how compromised palliative care can be when instituted only days before death. This report from Japan speaks to the critical role of communication in advancing palliative care. The regression analysis reported by the authors revealed independent determinants of family perception of late referrals. Interestingly, these determinants included family belief before admission that palliative care shortens the patient’s life, insufficient advance discussion about end-of-life care, and families’ perception of insufficient preparation for the changes in the patient’s condition. Programs in the United States such as the End of Life Physician Education Curriculum (EPEC) and the End of Life Nursing Education Consortium (ELNEC) have emphasized content of communication as the essential foundation of quality across dimensions of care including pain and symptom management, addressing ethical issues, cultural considerations, and advanced care planning. The National Hospice and Palliative Care Organization in the United States has frequently described hospice as “the difficult choice”—the choice that no one wants to make. For decades, our society has demonstrated that discussions of death and dying, hospice, and palliative care are topics to be avoided at all costs. It is again an interesting dichotomy that death, the topic we most avoid, is also the one that is inevitable for us all. Yet, the wisdom shared by the family caregivers in this study described palliative care as exceeding their expectations. The authors are to be commended for asking these expert family caregivers for advice, as illustrated in the recommendations provided in their Table 5. These 182 family caregivers reported that earlier cooperation of palliative care and oncology physicians would be helpful. The recommendations offered by these families support close collaboration between oncologists and palliative care specialists, rather than simply a swift transfer from one provider to the other as the patient’s condition declines. The recommendations also included having oncologists with improved knowledge of palliative care, allowing patients to receive medical treatments within the palliative care unit, oncologists’ continued participation in patient care, and the possibility of a “trial admission” to the palliative care unit. Each of these recommendations is applicable to other countries and settings. We at the City of Hope National Medical Center are currently participating in research titled “Simultaneous Care.” This project is supported by the National Cancer Institute (Dr Fred Myers, principal investigator, UC Davis Medical Center) and is a multisite study involving UC Davis, City of Hope National Medical Center, The Johns Hopkins University Cancer Center, and the University of Southern California to evaluate a model strategy by which JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 23 NUMBER 12 APRIL 2

BackgroundThe prevalence of dementia is increasing worldwide and many people with the condition require some level of palliative care. However, the trajectories of function and symptom burden in palliative care services at the end of life remain unclear. This study aimed to describe and compare the longitudinal trajectories of function and symptom burden among patients with dementia between hospital versus palliative community care services in the last two weeks of life.MethodsA retrospective cohort study used data from the Australian Palliative Care Outcomes Collaboration. Patients with dementia who died between 1 January 2013 and 31 December 2020 from the Australian Palliative Care Outcomes Collaboration. Four validated clinical instruments were used to collect outcomes on each individual’s function and symptom distress and severity. Multilevel models were used to estimate the differences in clinical trajectories between hospital and community-based palliative care in the last two weeks of life.ResultsPatients with dementia tended to have low levels of distress for most symptoms but increasing levels of functional impairment. There were no or only marginally significant differences in the symptom trajectories between the community and hospital groups (OR ranged from 0.57 to 1.97). Although clinical trajectories of function were relatively similar between two groups, statistically higher functional indicators were observed for people when admitted to community palliative care services (OR = 0.42 and 2.27, respectively).ConclusionsOur findings suggest that community-based palliative care services can be as effective as hospital-based care for many patients with dementia nearing the end of life. With appropriate support for families, community-based care could serve as a viable alternative to hospital-based care for some patients in the final stages of dementia.

e24110 Background: Palliative care (PC) improves symptom burden, patient and family distress and quality of life of patients with advanced illnesses. Previous evidence has shown that non-physician providers (NPP) can be effective in delivering care with minimal physician support. NPP-led PC interventions could potentially address gaps in the workforce and provide access to PC services. The overall objective of this systematic review is to evaluate the effectiveness of NPP-led PC interventions in the management of adults with cancer. Methods: We searched ten electronic databases up to October 2018 for randomized or cluster control trials that evaluated NPP-led interventions in both adults receiving end of life care for advanced malignancies and/or their caregivers. NPPs included nurses, advanced practitioners, social workers or case-worker. Interventions included symptom management, hospice care, advance care planning (ACP) or decision support. We recorded the following outcomes: quality of life, patient symptoms (anxiety, depression, pain or distress), satisfaction with care and ACP. Study quality was assessed using the Cochrane risk of bias tool version 2.0. Results: Overall 5,241 publications were screened, resulting in 207 publications that underwent full text review. 13 studies (n = 2,007 participants) included only patients with diagnoses of cancer and an additional 2 studies (n = 396 participants) focused on mixed diagnoses of advanced illness, including cancer. Only 2 studies focused on both caregivers and patients. A nurse was the lead provider in 13 studies, and an advance practitioner in 2 studies. The NPP-led interventions were mostly psychosocial with four also providing symptom management. Interventions mostly consisted of education, care coordination information and support. A total of 3 studies focused solely on ACP, while 2 additional studies addressed this as part of the planned intervention. Nine studies reported quality of life outcomes and seven studies reported on anxiety and depression. There was considerable heterogeneity among the studies with respect to the nature of the intervention and the diagnoses of the study participants. All but one of the studies examined had high risk of bias, mostly due to issues related to missing outcome data or measurement of the outcome. Conclusions: In the setting of changing models of population health care delivery, the results of this systematic review could provide evidence for implementation of non-physician-led palliative care services outside of clinical trials.

PC-FACS

Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or existing advance care plans (ACP). Methods Three projects included local education, regional data collection and contribution to national debate. • An ACP in PICU simulation programme for clinicians in our large quaternary centre. • A clinical audit to identify children with pre-existing LLCs with and without ACPs retrieved to PICU by a regional retrieval service in southeast England and who died during the admission for which they were transferred. • A national review article engaging palliative care teams and intensivists in considering the current landscape for children with LLC in PICU and analysing the ACP as part of a means to improved care. Results All three projects identified significant areas for further work. The education project outcome was positive, identifying a particular need for ongoing training in handling complex conversations around death and dying. The clinical audit found that the overwhelming majority of patients with LLCs retrieved had no ACP in place. The review piece was more reflective and generated considerable debate amongst the PICU community. Conclusions ACP and end of life care planning is vital for children with LLCs, their families and those who care for them in PICU. There is significant unmet need and significant will to improve the quality of the conversations and services we offer these children and their families and to increase the numbers offered timely ACPs.

Research Article| April 01 2012 Parents’ Experiences with Life-threatening Fetal Diagnosis AAP Grand Rounds (2012) 27 (4): 43. https://doi.org/10.1542/gr.27-4-43 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Twitter LinkedIn Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Parents’ Experiences with Life-threatening Fetal Diagnosis. AAP Grand Rounds April 2012; 27 (4): 43. https://doi.org/10.1542/gr.27-4-43 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search nav search search input Search input auto suggest search filter All PublicationsAll JournalsAAP Grand RoundsPediatricsHospital PediatricsPediatrics In ReviewNeoReviewsAAP NewsAll AAP Sites Search Advanced Search Topics: fetus, palliative care Source: Côté-Arsenault D, Denney-Koelsch E. “My baby is a person”: parents’ experiences with life-threatening fetal diagnosis. J Palliat Med. 2011; 14(12): 1302– 1308; doi: https://doi.org/10.1089/jpm.2011.0165Google Scholar Researchers at the University of Rochester interviewed eight parents faced with the experience of a lethal fetal diagnosis. The researchers’ goal was to better understand the experience and needs of parents in this context in order to help improve perinatal palliative care programs. A convenience sample of pregnant women and their partners referred to a perinatal palliative care program at one of two New York State perinatal centers was recruited to participate in audiotaped interviews. Inclusion criteria included pregnant mothers whose baby had a postbirth life expectancy of 2 months or less and who intended to continue the pregnancy. The audiotaped interviews were conducted during the pregnancy or postbirth and lasted 45 to 75 minutes. Interview questions were open-ended and began with asking the parents to tell the story of the pregnancy and their response to their baby’s diagnosis. Additional interview topics included other people’s reactions to their baby’s diagnosis, their interactions with medical providers during the course of the pregnancy, and their perception of the value of palliative care interventions. Initially, thematic analysis was conducted on the tapes and transcripts of the interviews by each investigator independently. Subsequently, the investigators analyzed the interviews together in order to reach consensus on a final list of themes. Of seven eligible families, five agreed to participate (3 couples and 2 women). Fetal diagnoses of the five infants included Trisomy 18, hypoplastic left heart syndrome, renal agenesis, and multiple genitourinary malformations. Four of five infants died prior to, during, or shortly after birth; the fifth infant was born live in a better than anticipated condition. Themes fell into two dominant dimensions: Personal Pregnancy Experience (how the parents personally felt) and Interactions with Others (how parents felt they were treated by others). Themes in the Personal Pregnancy dimension included grieving multiple losses (eg, the loss of the normal pregnancy, of the healthy baby, of the parent role), arrested parenting (eg, interruption of excitement and anticipation of the birth, decorating of home nursery), and “My Baby is a Person” (eg, naming the baby, acknowledging the personhood of the baby). In the dimension of Interactions with Others, themes included fragmented health care (eg, addition of several specialists), disconnected family and friends (eg, social awkwardness, unhelpful helpfulness), and utter aloneness (sense of being isolated and alone). Parents reported that the perinatal palliative care team was helpful in explaining prognosis and treatment options, and in providing emotional support. The authors conclude that parents facing a lethal fetal diagnosis have a need to feel like real parents and for their baby to be considered a real person — with a name and a life, no matter how short. Further, they believe a palliative care approach can be helpful to families with a lethal fetal diagnosis by providing empathic counseling about advance care planning,... You do not currently have access to this content.

BackgroundThe 2009 European Society of Cardiology Position statement on Palliative Care in Heart Failure concluded that palliative care should be considered part of comprehensive care provision over the whole disease...