Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes.
Design: quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression).
Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program.
Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment.
Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.
Background: An interdisciplinary palliative care team began exploring evaluation tools used to assess changes in the knowledge, skills, and attitudes of learners participating in clinical learning experiences on an interdisciplinary palliative care consult service. This article will review existing evaluation tools, examine the themes that emerge, discuss their strengths and limitations, and make recommendations for continued development in the field.
Methods and Findings: A literature search was performed using the MEDLINE database. Search terms included combinations of the following: interdisciplinary education, assessment/evaluation, and palliative care or palliative care assessment/test. Four hundred eighty-seven articles were captured during the initial search. Articles that focused on student readiness for interdisciplinary education and team self-assessments of current interdisciplinary collaboration practices were excluded. Nine articles were included in the review. Evaluation tools varied in terms of learner type, assessment type, and frequency. No tool was comprehensive in the assessment of knowledge, skills, and attitudes or truly interdisciplinary.
Conclusions: There is a lack of comprehensive and interdisciplinary evaluation tools in the published literature. Further research should be conducted to develop a tool that meets the needs of learners in clinical experiences within an interdisciplinary service.
BACKGROUND: Grieving and death rituals vary widely across cultures and are often influenced by geographical regions, religions, and local norms. Nursing rituals reflect the forms of cultural behaviour that assist in communicating traditional knowledge and practices. They help nurses maintain social order through cohesion and interaction.
AIM AND OBJECTIVES: Exploration of European and Middle Eastern intensive care nursing ceremonies and rituals surrounding care provided to patients after death has been carried out. The key question researchers asked was "Can you describe your practice of caring for a patient who has died?"
DESIGN: Prospective qualitative thematic analysis.
METHODS: This study used a prospective qualitative thematic analysis investigating nursing practice and rituals when caring for patients who have died in intensive care. The interviews were conducted face-to-face with nurses consenting to be interviewed for research purposes. During the interviews, researchers noted sentences and topics, which they later classified into categories and subcategories. The interview settings were international and national conferences, workshops, meetings, and seminars over a 2-year period. Thematic analysis was performed. This analysis allowed the researchers to understand and make sense of collective meanings and experiences of participants.
RESULTS: A total of 23 interviews with critical care nurses from 16 countries in Europe and Middle East were conducted. Through reflective and meaningful analytical interpretation, two main themes (with subthemes) emerged: sacredness and dignity. More similarities than differences among the nurses' experiences were found. Rituals included, opening a window, lighting a candle, blessing the deceased, and bereaving with the family.
CONCLUSIONS: Post-death ritual reflects local guidelines regulating the handling of the deceased body, culturally approved expressions of mourning, and acts to perform at specific times following death. Nursing rituals expressed here demonstrated the dignity, wherein nurses show towards the deceased and relationships between deceased and bereaved.
RELEVANCE TO CLINICAL PRACTICE: The investigators perceived nursing culture, beliefs, ceremonies, and rituals surrounding caring for patients who have died to be creative, spiritual, meaningful, and relevant for nurses.
The diagnosis of an aggressive, primary brain tumor is life altering for those affected and too often portends a poor prognosis. Despite decades of research, neither a cure nor even a therapy that reliably and dramatically prolongs survival has been found. Fortunately, there are a number of treatments that may prolong the life of select brain tumor patients although the symptom burden can sometimes be high. This article brings together neuro-oncologists, neurologists, and palliative care (PC) physicians to help shine a light on these diseases, their genetics, treatment options, and the symptoms likely to be encountered both from the underlying illness and its treatment. We hope to increase the understanding that PC teams have around these illnesses to improve care for patients and families.
OBJECTIVE: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty.
METHOD: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations.
RESULTS: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050).
CONCLUSIONS: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.
The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.
OBJECTIVE: Treatment limitation, as well as do-not-resuscitate (DNR) directives, are difficult but important to improve patients' quality of life and minimize dysthanasia. We aimed to study the approach to withholding, withdrawal, and DNR decisions, patients' characteristics, and process documentation in a general Intensive Care Unit (ICU) in Portugal.
METHODS: A retrospective analysis of data regarding the limitation of treatment decisions collected from previously-designed forms and complemented by medical record consultation.
RESULTS: A total of 1602 patients were admitted to the ICU between 2011 and 2016. DNR decisions were documented in 127 cases (7.9%). Patients with treatment limitations were older and had higher Simplified Acute Physiology Score II. The most frequent diagnosis preceding these decisions was sepsis (52.0%, n = 66); the most common main reason for limiting treatment was a poor prognosis of acute illness. Of the patients to whom a DNR was implemented, 117 (92.1%) died in the ICU (40.1% of the total number of ICU deaths), and hospital mortality was 100%. Participants in these decisions, as well as types of treatment withdrawn and their respective timings, were not registered in medical records.
CONCLUSION: Treatment limitation and DNR decisions were relatively common, in line with other Southern European studies, but behind Northern European and North American centers. Patients with these limitations were older and more severely ill than patients without such decisions. Documentation of these processes should be clear and detailed, either in specific forms or computerized clinical records; there is room for improvement in this area.
BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.
AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.
DESIGN: Nationwide population-based postbereavement survey.
PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.
RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.
CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.
Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The “Together for Short Lives” (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding the palliative care needs and symptoms of children within these TfSL groups will result in improved anticipation of clinical problems and tailored care. During this retrospective single-center cohort study, 198 children, adolescents, and young adults (CAYAs) were in PPC. Mean age at referral was 8.7 years (range 0.0–25.0), mean duration of care 355 days (range 1–2754). One hundred six (53.5%) CAYAs died during the study period. Sixty-five (32.8%) CAYAs were assigned to TfSL-1, 13 (6.6%) to TfSL-2, 49 (24.7%) to TfSL-3, and 71 (35.9%) to TfSL-4. Home visits were conducted on average every 9.6 days in TfSL-1, 18.9 days in TfSL-2, 31.7 days in TfSL-3, and 31.8 days in TfSL-4 (p value < 0.01).
Conclusions: Intensity of palliative care significantly differed between the TfSL groups. Neurological and gastrointestinal symptoms were most prominent across all TfSL groups. Symptom cluster analysis showed distinct clusters in TfSL-1 (cluster 1, fatigue/lack of appetite/nausea/somnolence; cluster 2, dyspnea/fear/myoclonus/seizures/spasticity) and TfSL-3/4 (cluster 1, spasticity; cluster 2, all other symptoms).
BACKGROUND: In the variegated legislative framework on advance directives, the first specific regulation in Italy on this issue came into force only in 2018.
RESEARCH OBJECTIVE: This qualitative study aimed to investigate the implications of the new Italian law on advance directives in clinical practice from the perspective of those who deal with this delicate ethical issue on an everyday basis, that is, Italian healthcare professionals.
RESEARCH DESIGN: A qualitative research design using semi-structured audio-recorded interviews was adopted. The data collection and analysis were performed according to the Grounded Theory approach.
PARTICIPANTS: Nineteen healthcare professionals (16 nurses, 3 physicians) working in a palliative care unit of a research and clinical institute in Italy.
ETHICAL CONSIDERATIONS: The study is part of the WeDistress HELL Project (WEllness and DISTRESS in HEalth care professionals dealing with end of Life and bioethicaL issues) approved by the Ethical Committee of ICS Maugeri - Institute of Pavia (Italy).
FINDINGS: The authors identified a main overall category, 'Pros and Cons of the Italian law on advance directives', composed of six constituent categories: Positive welcome, Self-determination and protection, Prompts for future betterment, Uncertainties, Lack of knowledge, and Neutrality and no suggestions.
DISCUSSION: The Italian law n. 219/2017 on advance directives was seen as a legal instrument possessing both strengths and weaknesses, but able to guarantee the patient's self-determination and support healthcare professionals in providing care according to patients' wishes.
CONCLUSION: An understanding of the healthcare providers' perspective may support the discussion on advance directives and bridge the gaps that currently persist in handling ethical issues.
Sexuality, as one of the determinants of quality of life, includes different subjective dimensions related to identity, communication and intimacy. According to the World Health Organization (WHO), sexuality is a central aspect of being human throughout life and encompasses sex , gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction".
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BACKGROUND: Intensive care to facilitate organ donation (ICOD) has been defined as the initiation or continuation of intensive care measures in patients with a devastating brain injury (DBI) in whom treatment for curative purposes is deemed futile, and who are considered possible organ donors, with the aim of offering donation after brain death (DBD) inside their end-of-life care plans. We describe the effect on the donation and transplantation activity of the implementation of ICOD protocol at a university hospital.
METHODS: Retrospective analysis (2015-2018) of demographics and outcomes of all patients with a DBI, in whom ICOD was considered as part of their end-of-life care in Vall d'Hebron University Hospital, Barcelona.
RESULTS: Of the 983 possible donors evaluated, ICOD was considered in 206 (21%), of whom 115 (55.8%) were medically unsuitable for donation. Family consent was obtained for 69 (76%) of the remaining patients. Refusal rate was twice as high when nontherapeutic ventilation was required for organ donation (34%) vs patients previously ventilated (13.6%) (P = .02). Patients subject to ICOD died in a median of 2 days (1-3 d) and 88.4% became actual donors (39 after brain death; 22 after circulatory death). Nine (17.6%) donors were finally not utilized. ICOD contributed to 29% (ranging from 27.7% in 2015 to 31.6% in 2018) of the 208 actual donors and 26% of the 603 organs transplanted.
CONCLUSIONS: ICOD is well-accepted by families and offers the donation option to an increasing number of patients at our hospital. It provides an important and sustained increment of the organ pool for transplantation.
BACKGROUND: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of use.
METHODS: We analyzed the 2005-2011 National Inpatient Sample, a representative, cross-sectional sample of US hospital admissions. Our study cohort comprised 10 960 hospitalizations of children with cancer and high in-hospital mortality risk. Survey-weighted regression models were constructed to determine associations of person- and hospital-level characteristics with PC involvement and healthcare costs.
RESULTS: Overall, 4.4% of hospitalizations included PC involvement. In regression models invoking stepwise variable selection, a shorter length of stay (PC vs no PC; mean: 23.9 vs 32.6 days), solid cancer (solid vs hematologic vs brain cancer; PC use: 7.4% vs 2.8% vs 5.5%), and older age (PC vs no PC; mean: 10.2 vs 8.9 years) were associated with PC use. PC utilization was also associated with lower overall and daily hospital costs.
CONCLUSIONS: One in 20 pediatric inpatients with cancer and high mortality risk receives PC, with differential utilization by socio-economic groups. These results have significant implications for public health resource allocation and the delivery of pediatric PC as high-value care. Future research should focus on the development of new tools to help physicians assess when PC is appropriate for their patients.
PURPOSE: We aimed to explore the value of palliative resection or radiation of primary tumor for metastatic esophageal cancer (EC) patients.
METHODS: Surveillance, Epidemiology, and End Results database was used for identifying metastatic EC patients. The patients were divided into resection and nonresection groups. And patients without resection were divided into radiation and nonradiation groups. Propensity score matching (PSM) analyses were adopted to reduce the baseline differences between the groups. Cancer specific survivals (CSSs) and overall survivals (OSs) were compared by Kaplan-Meier (K-M) curves. Multivariable analyses by COX proportion hazards model were performed to identify risk factors for CSS and OS. Predictive nomograms were conducted according to both postoperative factors and preoperative factors.
RESULTS: A total of 7982 metastatic EC patients were selected for our analyses. After PSM, 978 patients were included in the survival analyses comparing palliative resection and nonresection. The CSS and OS for patients underwent palliative resection were significantly longer than those without resection (median CSS: 21 months vs 7 months, P < .001; median OS: 20 months vs 7 months, P < .001). In the overall population without resection, 654 patients were matched for radiation and nonradiation groups. And K-M curves showed that patients with radiation had longer CSS and OS than those without radiation (median CSS: 11 months vs 6 months, P < .001; median OS: 10 months vs 6 months, P < .001). Nomograms were generated for prediction of 1-, 2-, and 3-year CSS and OS. All C-indexes implied moderate discrimination and accuracy. And all nomograms had good calibration.
CONCLUSION: Palliative resection or radiation of primary tumor could prolong CSS and OS of metastatic EC patients.
Some end-of-life aspects have become a significant political and social issue such as elderly care and euthanasia. But hardly anything is known about how the general public in Germany thinks about death and dying more generally. Therefore, we conducted a representative online survey (N = 997) regarding 21 end-of-life aspects. Differences between subgroups were analyzed by conducting analyses of variance and Tukey honestly significance difference post hoc tests and by performing t tests. The findings revealed that the general public is open to engaging with topics of death, dying, and grief and that death education might even be promoted for children. Most participants appraised dealing with the finitude of life as part of a good life, but few have contemplated death and dying themselves so far. Attitudes and perceptions were related to age, subjective health, religious denomination, and gender. The survey provides useful implications for community palliative care, death education, and communication with dying people.
Background: Many older people with serious chronic illnesses experience complex health problems for which palliative care is indicated. We aimed to examine the quality of primary palliative care for people aged 65–84 years and those 85 years and older who died non-suddenly in three European countries.
Methods: This is a nationwide representative mortality follow-back study. General practitioners (GPs) belonging to epidemiological surveillance networks in Belgium (BE), Italy (IT) and Spain (ES) (2013–2015) registered weekly all deaths in their practices. We included deaths of people aged 65 and excluded sudden deaths judged by GPs. We applied a validated set of quality indicators.
Results: GPs registered 3496 deaths, of which 2329 were non-sudden (1126 aged 65–84, 1203 aged 85+). GPs in BE (reference category) reported higher scores than IT across almost all indicators. Differences with ES were not consistent. The score in BE particularly differed from IT on GP–patient communication (aged 65–84: 61% in BE vs 20% in IT (OR=0.12, 95% CI 0.07 to 0.20) aged 85+: 47% in BE vs 9% in IT (OR=0.09, 95% CI 0.05 to 0.16)). Between BE and ES, we identified a large difference in involvement of palliative care services (aged 65–84: 62% in BE vs 89% in ES (OR=4.81, 95% CI 2.41 to 9.61) aged 85+: 61% in BE vs 77% in ES (OR=3.1, 95% CI 1.71 to 5.53)).
Conclusions: Considerable country differences were identified in the quality of primary palliative care for older people. The data suggest room for improvement across all countries, particularly regarding pain measurement, GP–patient communication and multidisciplinary meetings.
PURPOSE: Clinical data warehouses (cDWHs) and cancer registry databases have enabled researchers to conduct clinical analytics with structured electronic health record data. However, these secondary electronic health record sources are often limited in scope because they do not capture the clinical information needed to understand complex clinical questions. Thus, we evaluated the effect of additional curation of data.
MATERIALS AND METHODS: Clinical data sets of 149 patients with prostate cancer with biochemical recurrence after radical prostatectomy treated with salvage or palliative radiotherapy between 2008 and 2017 from our institutional cDWH and Gießener Tumor Documentation System (GTDS) were linked (data warehouse [DWH] population) for analyzing treatment outcomes. The linked data sets were manually curated (manual postprocessing [MPP], eg, incorporate data from established urologists). The primary outcomes were the impact on data quality of treatment outcomes and the time spent on data curation.
RESULTS: We obtained significantly more information on disease progression and patient survival (nonsignificant) when using curated data; the biochemical progression-free survival rate at 5 years for the DWH and DWH plus MPP populations was 63% v 30% (P = .001) and the overall survival rate was 84% v 81% (P = .479), respectively. The median deviation of completeness and the median concordance of clinical data values were 21.47% (range, 55.38%-100%) and 95.00% (range, 63.40%-100%), respectively. We spent 121 hours, 42 minutes on data curation, with most time required for laboratory values, accounting, for a total of 45 hours, 20 minutes (37.26%).
CONCLUSION: Our analysis indicates that time-to-event outcomes for patients with prostate cancer cannot be extracted using secondary data sources (cDWH plus GTDS) only. Outcomes data differed between the electronic data (DWH) and the second manual extraction (DWH plus MPP) because of a lack of follow-up data. When using such unique database resources, only baseline characteristics can reliably be extracted.
Background: Older patients with traumatic brain injury (TBI) have higher mortality and morbidity than their younger counterparts. Palliative care (PC) is recommended for all patients with a serious or life-limiting illness. However, its adoption for trauma patients has been variable across the nation. The goal of this study was to assess PC utilization and intensity of care in older patients with severe TBI. We hypothesized that PC is underutilized despite its positive effects.
Materials and methods: The National Inpatient Sample database (2009-2013) was queried for patients aged =55 y with International Classification of Diseases, Ninth Revision codes for TBI with loss of consciousness =24 h. Outcome measures included PC rate, in-hospital mortality, discharge disposition, length of stay (LOS), and intensity of care represented by craniotomy and or craniectomy, ventilator use, tracheostomy, and percutaneous endoscopic gastrostomy.
Results: Of 5733 patients, 78% died in hospital with a median LOS of 1 d, and 85% of the survivors were discharged to facilities. The overall PC rate was 35%. Almost 40% of deaths received PC, with nearly half within 48 h of admission. PC was used in 26% who had neurosurgical procedures, compared with 35% who were nonoperatively managed (P = 0.003). PC was associated with less intensity of care in the entire population. For survivors, those with PC had significantly shorter LOS, compared with those without PC.
Conclusions: Despite high mortality, only one-third of older patients with severe TBI received PC. PC was associated with decreased use of life support and lower intensity of care. Significant efforts need to be made to bridge this quality gap and improve PC in this high-risk population.
BACKGROUND: Authors of expert guidelines and consensus statements recommend that decisions at the end-of-life (EOL) be discussed before and after implantation of an implantable cardioverter defibrillator (ICD) and include promotion of shared decision-making. The purpose of this study was to describe experiences, attitudes, and knowledge about the ICD at EOL in ICD recipients and to compare experiences, attitudes, and knowledge in ICD recipients with and without heart failure (HF). We further sought to determine factors associated with having discussions about EOL.
METHODS AND RESULTS: Using a national registry in Sweden of all ICD recipients (n=5355) in 2012, an EOL questionnaire, along with other ICD-related measures, was completed by 2403 ICD recipients. Of the participants, 1275 (n=53%) had HF. Their responses in the knowledge, experience, and attitude domains were almost identical to those without HF. Forty percent of patients with and without HF did not want to discuss their illness trajectory or deactivation of their ICD ever. In logistic regression analyses, we found that having had an ICD shock (OR, 2.05; CI, 1.64-2.56), having high levels of anxiety (OR, 1.41; CI, 1.04-1.92), and having high levels of ICD concerns (OR, 1.53; CI, 1.22-1.92) were the only significant predictors of having discussions with providers about EOL scenarios (P<0.001 for full model).
CONCLUSIONS: HF was not a predictor of having an EOL conversation. Further research is needed to determine if attitudes related to not wanting to discuss EOL interfere with good quality of life and of death, or if shared decision-making should be encouraged in these individuals.
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.
METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.
RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.
CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.