IPH response to Palliative and End of Life Care Strategy Consultation

Palliative care and end of life care is the active, holistic care of patients with advanced and progressive illness.  It is an integral part of the care delivered by all health and social care professionals, and indeed by families and carers, to those living with, and dying from any advanced, progressive and incurable conditions.  The Department of Health, Social Services and Public Safety (NI) issued a consultation document on a 5 year Strategy in December 2009.

Änderung des Therapieziels am Lebensende: Effekte einer Klinik-Leitlinie [Changing the treatment goal at the end of life: effects of a guideline at a hospital].

BACKGROUND AND OBJECTIVE: Deciding about treatment goals at the end of life is a frequent and difficult challenge to medical staff. As more health care institutions issue ethico-legal guidelines to their staff the effects of such a guideline should be investigated in a pilot project.¦PARTICIPANTS AND METHODS: Prospective evaluation study using the pre-post method. Physicians and nurses working in ten intensive care units of a university medical center in Germany answered a specially designed questionnaire before and one year after issuance of the guideline.¦RESULTS: 197 analyzable answers were obtained from the first (pre-guideline) and 251 from the second (post-guideline) survey (54 % and 58 % response rate, respectively). Initially the clinicians expressed their need for guidelines, advice on ethical problems, and continuing education. One year after introduction of the guideline one third of the clinicians was familiar with the guideline's content and another third was aware of its existence. 90% of those who knew the document welcomed it. Explanation of the legal aspects was seen as its most useful element. The pre- and post-guideline comparison demonstrated that uncertainty in decision making and fear of legal consequences were reduced, while knowledge of legal aspects and the value given to advance directives increased. The residents had derived the greatest benefit.¦CONCLUSION: By promoting the knowledge of legal aspects and ethical considerations, guidelines given to medical staff can lead to more certainty when making in end of life decision.

End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland

The National Council on Ageing and Older People (NCAOP) and the Irish Hospice Foundation (IHF) are pleased to present this report, End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland. The report details the results of research that focuses, for the first time in Ireland, on the quality oflife and quality of care at the end-of-life for older people in various care settings including acute hospitals, public extended care units, private nursing homes, voluntary nursing homes and welfare homes. The report provides a new model for care at the end-of-life which goes beyond specialist palliative care provision to embrace a compassionate approach that supports older people who are living with, or dying from, progressive, chronic and life-threatening conditions, and attends to all their needs: physical, psychological,social and spiritual. Download document here

End-of-Life Care for Older People - Conference Proceedings

The purpose of this report on seminar proceedings is to provide a focused andaccurate summary of the deliberations of the seminar.The main aim of the seminar was to provide a forum in which to consider the determinants of quality of life of older people at the end-of-life and to identify priority measures and policies to ensure the highest standards of end-of-life care for older people in acute and long-stay settings in Ireland. Download document here

End of life trajectories across conditions

The findings of Pinnock and colleagues’ study on the longitudinal perspectives of people with severe chronic obstructive pulmonary disease (COPD) have implications for other non-malignant conditions.To read the 'BMJ' news article in full.

End of life care standards for people with dementia

End of life care standards for people with dementiaThis project, funded under Call 1 of CARDI’s Grants Programme and led by Dr Suzanne Cahill, School of Social Work and Social Policy, Trinity College Dublin, highlights the need for guaranteed standards of care for older people with dementia at the end of their lives.The research recommends the introduction of standards as a matter of urgency because of the huge increases in the number of people affected, and the number likely to be affected in the future. It is estimated that the number of people with dementia in the Republic of Ireland will rise from 44,000 to 104,000 by 2036 and in Northern Ireland from 16,000 to 47,000 in 2051.The research draws attention to the importance of agreeing new standards in Ireland, North and South, by proposing guidelines to develop policies and practices that can reflect the best available throughout the world.Research Team:•������ Dr Suzanne Cahill, School of Social Work and Social Policy, Trinity College Dublin•������ Ms Daphne Doran, Quality Initiatives, Belfast•������ Dr Max Watson, University of Ulster and Northern Ireland HospiceResearch briefingFull report��

Medication use in patients with end of life dementia:Presentations

CARDI recently launched a new report (Friday 6 July 2012) which finds considerable uncertainty and variation in the medicines doctors say they would prescribe for patients with dementia at the end of life when presented with clinical scenarios. The all-Ireland research, led by a team at QUB, finds evidence that GPs and hospital physicians indicate they would continue with dementia medications and statins and actively prescribe antibiotics when there is limited evidence of benefits to patients with dementia at end of life.Links to presentations are below:Assessment of factors which influence decision-making regarding medication use in patients with dementia at the end of life: Prof Carmel HughesMedication use in patients with end of life dementia: Dr Shaun O'Keefe

CARDI Research Brief: Medication use in patients with dementia at the end of life

��Palliative care and medication use are important issues in dealing with end-of-life stage dementia. As research into palliative care for patients with advanced dementia has been limited to date, CARDI funded a project, led by Dr. Carole Parsons of Queen’s University Belfast, as part of its grants programme. This project aimed to evaluate the extent to which patient-related factors influenced clinical decision-making with regard to medication use in patients with endstagedementia. This research brief presents a summary of the findings from the full report, Assessment of factors which influence physician decisionmaking regarding medication use in patients with dementia at the end of life (Parsons, et al., 2012).Read the research brief here: Medication use in patients with dementia at the end of lifeRead the press release here

Guidance on starting end of life care conversations with people affected by dementia

Dementia UK, as a member of the Dying Matters coalition, contributed to a new leaflet that discusses how to begin conversations around end of life care for people with dementia. Aimed at GPs and families who have recently received a dementia diagnosis, this leaflet provides at-a-glance information about having this very necessary conversation and includes information about when to talk about it and tips about what to say. Download the leaflet

Interventions for promoting the use of advance directives for end-of-life decisions in adults (protocol)

To assess the effects of interventions for promoting the use of advance directives (ADs) about end-of-life decisions of adults

Désir de mort, désir de vie et fin de vie [Desire to die, desire to live at the end of life]

Since a couple of years, physicians are confronted with an increasing request of end of life patients asking for a dying facilitated process. The reasons for this are multiple and complex. Existential suffering, increased by depression, a feeling of loss of meaning or dignity and/or being a burden, seems to be a significant factor. Social isolation and physical symptoms seem to be only contributory. The identification of "protecting elements" such as spiritual well-being or a preserved sense of dignity offers new opportunities for care. Providing a space for dialogue by exploring the patient's expectations and fears, his knowledge of care options available at the end of life, his own resources and difficulties frequently contribute to decrease suffering.

Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians.

Objectives Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. Methods The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital in Germany. The transcripts were subjected to qualitative content analysis. Results Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Conclusion Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment.

End of Life Conversations, October 2003

A short course designed for adult study groups Prepared by the Curriculum Task Force of the End-of-Life Care Coalition of Central Iowa

How Much Chemotherapy Are Patients With Advanced Pancreatic Cancer Receiving at the End of Life?

Background: Advanced pancreatic adenocarcinoma (APC) is a chemoresistant cancer with poor prognosis. We evaluated the use of chemotherapy in the last months of life.Methods: Retrospective analysis of patients with APC treated from 1993 to 2010 at the Oncology Institute of Southern Switzerland. Clinical and laboratory parameters starting from 28 days prior to the last administration of chemotherapy were recorded, including ECOG performance status, presence of ascites, haemoglobin (Hb), white blood cell (WBC) count, platelets, total bilirubin, albumin, LDH, C-reactive protein (C-rp) and Ca 19.9.Results: The characteristics of the 231 patients were: males/females 53%/47%; metastatic/locally advanced disease 80%/20%; median age 66 years (range 32−85). Median overall survival calculated from diagnosis was 6.1 months (95% CI: 5.1−7.2); death was due to disease progression in all cases. At last chemotherapy administration, ECOG performance status was 0−1 in 38% and 2−3 in 62%. Fifty-nine percent of pts received first-line chemotherapy only (gemcitabine in 70%; gemcitabine-based doublets or 5FU in 30%), whilst 32%, 8% and 1% had second- (5FU 37%; oxaliplatinbased doublets 57%; phase I trial 6%), third- and fourth-line therapy (single agent or phase I trial), respectively. The interval between last chemotherapy administration and death was <4 weeks in 24%, _4−12 weeks in 47% and >12 weeks in 29%. Table 1 summarizes the proportion of patients treated according to the interval between last chemotherapy and death refered to chemotherapy line. Median survival from last chemotherapy delivery to death was 7.5 weeks (95% CI 6.7−8.4). In univariate analysis, presence of ascites, elevated WBC, total bilirubin, LDH, C-rp and Ca 19.9, and reduced albumin were found to predict shorter survival (p < 0.05 for each). However, none of them was an independent predictor in the multivariate analysis.Conclusions: A significant proportion of patients with APC received chemotherapy in the last months of life. In our study, none of the clinical and laboratory parameters recorded 28 days priorto the last chemotherapy delivery were found to predict survival.