Fliss Murtagh

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Trajectories of Kidney Function Decline in the 2 Years Before Initiation of Long-term Dialysis

BACKGROUND Little is known about patterns of kidney function decline leading up to the initiation of long-term dialysis. STUDY DESIGN Retrospective cohort study. SETTING & PARTICIPANTS 5,606 Veterans Affairs patients who initiated long-term dialysis in 2001-2003. PREDICTOR Trajectory of estimated glomerular filtration rate (eGFR) during the 2-year period before initiation of long-term dialysis. OUTCOMES & MEASUREMENTS Patient characteristics and care practices before and at the time of dialysis initiation and survival after initiation. RESULTS We identified 4 distinct trajectories of eGFR during the 2-year period before dialysis initiation: 62.8% of patients had persistently low level of eGFR < 30 mL/min/1.73 m2 (mean eGFR slope, 7.7 ± 4.7 [SD] mL/min/1.73 m2 per year), 24.6% had progressive loss of eGFR from levels of approximately 30-59 ml/min/1.73 m2 (mean eGFR slope, 16.3 ± 7.6 mL/min/1.73 m2 per year), 9.5% had accelerated loss of eGFR from levels > 60 mL/min/1.73 m2 (mean eGFR slope, 32.3 ± 13.4 mL/min/1.73 m2 per year), and 3.1% experienced catastrophic loss of eGFR from levels > 60 mL/min/1.73 m2 within 6 months or less. Patients with steeper eGFR trajectories were more likely to have been hospitalized and have an inpatient diagnosis of acute kidney injury. They were less likely to have received recommended predialysis care and had a higher risk of death in the first year after dialysis initiation. CONCLUSIONS There is substantial heterogeneity in patterns of kidney function loss leading up to the initiation of long-term dialysis perhaps calling for a more flexible approach toward preparing for end-stage renal disease.

Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care

Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines.

How many people need palliative care? A study developing and comparing methods for population-based estimates.

Background: Understanding the need for palliative care is essential in planning services. Aim: To refine existing methods of estimating population-based need for palliative care and to compare these methods to better inform their use. Design: (1) Refinement of existing population-based methods, based on the views of an expert panel, and (2) application/comparison of existing and refined approaches in an example dataset. Existing methods vary in approach and in data sources. (a) Higginson used cause of death/symptom prevalence, and using pain prevalence, estimates that 60.28% (95% confidence interval = 60.20%–60.36%) of all deaths need palliative care, (b) Rosenwax used the International Statistical Classification of Diseases and Related Health Problems–10th Revision (ICD-10) causes of death/hospital-use data, and estimates that 37.01% (95% confidence interval = 36.94%–37.07%) to 96.61% (95% confidence interval = 96.58%–96.64%) of deaths need palliative care, and (c) Gómez-Batiste used percentage of deaths plus chronic disease data, and estimates that 75% of deaths need palliative care. Setting/participants: All deaths in England, January 2006–December 2008, using linked mortality and hospital episode data. Results: Expert panel review identified changing practice (e.g. extension of palliative care to more non-cancer conditions), changing patterns of hospital/home care and multiple, rather than single, causes of death as important. We therefore refined methods (using updated ICD-10 causes of death, underlying/contributory causes, and hospital use) to estimate a minimum of 63.03% (95% confidence interval = 62.95%–63.11%) of all deaths needing palliative care, with lower and upper mid-range estimates between 69.10% (95% confidence interval = 69.02%–69.17%) and 81.87% (95% confidence interval = 81.81%–81.93%). Conclusions: Death registration data using both underlying and contributory causes can give reliable estimates of the population-based need for palliative care, without needing symptom or hospital activity data. In high-income countries, 69%–82% of those who die need palliative care.

Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease

Background: Patients with advanced renal failure are increasingly opting for conservative treatment, yet little is known of their palliative care needs. Methods: We performed a cross-sectional study, examining symptom burden and quality of life in patients with advanced renal failure (estimated GFR < 17 mL/min; n = 11). A contemporary cohort with terminal malignancy acted as comparators (n = 11). Symptom burden was scored using an extended Memorial Symptom Assessment Scale Short Form questionnaire. Quality of life was assessed using the Euroqol-5Q questionnaire. Demographic and pathological data, performance status and co-morbidity were also recorded. Results: Baseline characteristics were similar for the two groups. Symptom burden (renal 17; cancer 15; P =NS) and quality of life scores (renal 60; cancer 60; P =NS) were remarkably similar. Both groups reported high levels of psychological distress. Conclusions: Patients with advanced renal failure experience a symptom burden and impairment of quality of life similar to that of patients with terminal malignancy.

Understanding Symptoms in Patients with Advanced Chronic Kidney Disease Managed without Dialysis: Use of a Short Patient-Completed Assessment Tool

Background: It is often believed that patients with advanced chronic kidney disease (CKD) stage 4–5 have few symptoms, and that dying with renal disease is relatively symptom-free. But the symptom burden of patients managed conservatively (without dialysis), with potentially high levels of comorbidity and poor functional status, is unknown. This clinical audit evaluated the prevalence and severity of symptoms in conservatively managed CKD stage 4–5 patients. Methods: Symptom data was collected from all conservatively managed patients from 2 renal units referred to a new renal palliative care service over a 10-month period between April 2005 and January 2006. Data on symptom prevalence and severity was collected as part of their routine clinical care, using a modified version of the Patient Outcome Scale – symptom module (POSs). This patient-completed instrument identifies the presence and severity of 17 symptoms. Demographic data was also collected, including estimated glomerular filtration rate (eGFR) using the MDRD formula, primary renal diagnosis and comorbidity. Results: Symptoms were evaluated in 55 patients, with a mean age of 82 years (SD 5.5, range 66–96). eGFR ranged from 3 to 30 ml/min (median 11, mean 12.75). In patients with CKD stage 4–5, managed without dialysis, the symptom burden is high. The most prevalent symptoms reported were weakness (75%), poor mobility (75%), poor appetite (58%), pain (56%), pruritus (56%) and dyspnoea (49%). The total number of symptoms each individual patient experienced ranged from 1 to 14 (median 7, mean 6.8). Symptoms were frequently reported as moderate, severe, or overwhelming; in 54% of patients with poor mobility, 48% with weakness, 30% with itching, 31% with anorexia and 27% with pain. No significant association was demonstrated between the number of symptoms experienced and either severity of renal disease or comorbidity score. Conclusions: This structured clinical evaluation demonstrates the extent and severity of symptom burden in conservatively managed patients with CKD stage 4–5, and demonstrates the use of an appropriate clinical tool that can be used to assess the efficacy of treatment.

End-Stage Renal Disease: A New Trajectory of Functional Decline in the Last Year of Life

OBJECTIVES: To determine the functional trajectory in the last year of life in end‐stage renal disease managed without dialysis.

Trajectories of Illness in Stage 5 Chronic Kidney Disease: A Longitudinal Study of Patient Symptoms and Concerns in the Last Year of Life

BACKGROUND AND OBJECTIVES The illness trajectory in the last year of life in advanced (stage 5) chronic kidney disease is poorly understood. Mapping the trajectory of patient-centered outcomes could facilitate better care. The objectives of this study were to determine trajectories of symptoms and wider health-related concerns in the last year of life in stage 5 chronic kidney disease, managed without dialysis. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS A longitudinal symptom survey in three UK renal units was used, using the Memorial Symptom Assessment Scale-Short Form and core Palliative Care Outcome Scale. Average (using mean scores over time) and individual (using individual scores over time, with visual graphical analysis) trajectories were mapped. RESULTS Seventy-four patients (mean age, 81 ± 6.8 years) were recruited; 49 died during follow-up. Average trajectories showed moderate symptom distress and health-related concerns, with marked increase in the last 2 months of life. Visual graphical analysis enabled stable, increasing, or fluctuant individual trajectories to be identified. The proportion following these trajectories varied between outcome measures; regarding symptoms, 50% followed a stable pattern, 24% increased, and 21% fluctuated compared with 26%, 57%, and 21%, respectively, for health-related concerns. Inter-rater agreement in grouping trajectories was high (κ statistic, 0.80 and 0.86, respectively). CONCLUSIONS In the 2 months before death, patients reported a sharp increase in symptom distress and health-related concerns. Health care should anticipate and address this increase, which may indicate the patients is approaching death. Considerable individual variation and flexibility/responsiveness of care is important: one size of service does not fit all.

Symptom management for the adult patient dying with advanced chronic kidney disease: A review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group

Abstract Improvement in end-of-life-care is required for patients dying with chronic kidney disease (CKD). The UK government now recommends that tools such as the Liverpool Care Pathway for the Dying Patient (LCP) be used to enhance the care of those patients dying with CKD. The LCP was originally developed for patients dying with terminal cancer, however has been shown to be transferable to patients dying with heart failure or stroke. On this background, in 2005 a UK National Renal LCP Steering Group was formed. The aim was to determine whether or not the generic LCP was transferable to patients dying with CKD. An Expert Consensus sub-group was established to produce evidence-based prescribing guidelines to allow safe and effective symptom control for patients dying with renal failure. These guidelines were finalised by the Expert Consensus group in August 2007 and endorsed by the Department of Health in March 2008. A literature search on symptom control and end-of-life care in renal failure was performed. A summary of the evidence was presented at a National Steering Group meeting. Opinions were given and provisional guidelines discussed. A first draft was produced and individually reviewed by all members of the Expert Group. Following review, amendments were made and a second draft written. This was presented to the entire National Steering Group and again individual comments were taken into consideration. A third and fourth draft were written and individually reviewed, before the guidelines were finalised by the Expert Consensus group. Patients dying with advanced CKD suffer symptoms similar to patients dying of cancer. The Renal LCP prescribing guidelines aim to control the same symptoms as the generic LCP: pain, dyspnoea, terminal restlessness and agitation, nausea and respiratory tract secretions. The evidence for the production of the guidelines is discussed and how a consensus was reached. A summary of the guidelines is given and the complete guidelines document is available via the Marie Curie Palliative Care Institute, Liverpool website.

The use of opioid analgesia in end-stage renal disease patients managed without dialysis: recommendations for practice.

The numbers of patients dying with end-stage renal disease (ESRD), particularly those managed conservatively (without dialysis) or withdrawing from dialysis is increasing rapidly in developed countries. There is growing awareness of the extensive symptom control needs of these patients. Pain is a common problem, and has been both under-recognized and under-treated. It is challenging to manage, largely because of the constraints very poor renal function places on use of medication. Although pharmacological reviews of opioid use in renal failure have been published, there is a need for clinical recommendations to aid palliative and renal specialists in providing effective pain control. This review describes the pharmacological evidence for and against the use of the different opioid medications, and translates this into clinical recommendations for ESRD patients managed conservatively, not for those on dialysis for whom there are different pharmacological considerations. Acetaminophen (paracetamol) is recommended at Step 1 of the World Health Organization ladder. Of the Step 2 analgesics, tramadol is the least problematic, although dose reduction and increased dosing interval are required, and caution should be exercised. Of the Step 3 analgesics, fentanyl, alfentanil and methadone are recommended. There is limited evidence for buprenorphine, although theoretical reasons why it may be a good choice for these patients. Hydromorphone and oxycodone cannot be recommended because of extremely limited evidence, although each is likely a better choice than morphine or diamorphine. Morphine and diamorphine themselves are not recommended because of known accumulation of potentially toxic metabolites.