Seeing is believing - healthcare professionals' perceptions of a complex intervention to improve care towards the end of life: A qualitative interview study.

BACKGROUND: Methods to improve care, trust and communication are important in acute hospitals. Complex interventions aimed at improving care of patients approaching the end of life are increasingly common. While evaluating outcomes of complex interventions is essential, exploring healthcare professionals' perceptions is also required to understand how they are interpreted; this can inform training, education and implementation strategies to ensure fidelity and consistency in use. AIM: To explore healthcare professionals' perceptions of using a complex intervention (AMBER care bundle) to improve care for people approaching the end of life and their understandings of its purpose within clinical practice. DESIGN: Qualitative study of healthcare professionals. Analysis informed by Medical Research Council guidance for process evaluations. SETTING/PARTICIPANTS: A total of 20 healthcare professionals (12 nursing and 8 medical) interviewed from three London tertiary National Health Service hospitals. Healthcare professionals recruited from palliative care, oncology, stroke, health and ageing, medicine, neurology and renal/endocrine services. RESULTS: Three views emerged regarding the purpose of a complex intervention towards the end of life: labelling/categorising patients, tool to change care delivery and serving symbolic purpose indirectly affecting behaviours of individuals and teams. All impact upon potential utility of the intervention. Participants described the importance of training and education alongside implementation of the intervention. However, adequate exposure to the intervention was essential to witness its potential added value or embed it into practice. CONCLUSION: Understanding differing interpretations of complex interventions is essential. Consideration of ward composition, casemix and potential exposure to the intervention is critical for their successful implementation.

Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle.

BACKGROUND: Clinical uncertainty is emotionally challenging for patients and carers and creates additional pressures for those clinicians in acute hospitals. The AMBER care bundle was designed to improve care for patients identified as clinically unstable, deteriorating, with limited reversibility and at risk of dying in the next 1-2 months. AIM: To examine the experience of care supported by the AMBER care bundle compared to standard care in the context of clinical uncertainty, deterioration and limited reversibility. DESIGN: A comparative observational mixed-methods study using semi-structured qualitative interviews and a followback survey. SETTING/PARTICIPANTS: Three large London acute tertiary National Health Service hospitals. Nineteen interviews with 23 patients and carers (10 supported by AMBER care bundle and 9 standard care). Surveys completed by next of kin of 95 deceased patients (59 AMBER care bundle and 36 standard care). RESULTS: The AMBER care bundle was associated with increased frequency of discussions about prognosis between clinicians and patients (χ(2) = 4.09, p = 0.04), higher awareness of their prognosis by patients (χ(2) = 4.29, p = 0.04) and lower clarity in the information received about their condition (χ(2) = 6.26, p = 0.04). Although the consistency and quality of communication were not different between the two groups, those supported by the AMBER care bundle described more unresolved concerns about caring for someone at home. CONCLUSION: Awareness of prognosis appears to be higher among patients supported by the AMBER care bundle, but in this small study this was not translated into higher quality communication, and information was judged less easy to understand. Adequately powered comparative evaluation is urgently needed.

Thinking ahead--the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study.

BACKGROUND: There is a need to improve end-of-life care for people with end-stage kidney disease, particularly due to the increasingly elderly, frail and co-morbid end-stage kidney disease population. Timely, sensitive and individualised Advance Care Planning discussions are acceptable and beneficial for people with end-stage kidney disease and can help foster realistic hopes and goals. AIM: To explore the experiences of people with end-stage kidney disease regarding starting haemodialysis, its impact on quality of life and their preferences for future care and to explore the Advance Care Planning needs of this population and the timing of this support. STUDY DESIGN: Semi-structured qualitative interview study of people receiving haemodialysis. Interviews were analysed using thematic analysis. Recruitment ceased once data saturation was achieved. SETTING/PARTICIPANTS: A total of 20 patients at two UK National Health Service hospitals, purposively sampled by age, time on haemodialysis and symptom burden. RESULTS: Themes emerged around: Looking Back, emotions of commencing haemodialysis; Current Experiences, illness and treatment burdens; and Looking Ahead, facing the realities. Challenges throughout the trajectory included getting information, communicating with staff and the 'conveyor belt' culture of haemodialysis units. Participants reported a lack of opportunity to discuss their future, particularly if their health deteriorated, and variable involvement in treatment decisions. However, discussion of these sensitive issues was more acceptable to some than others. CONCLUSION: Renal patients have considerable unmet Advance Care Planning needs. There is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory. However, an individualised approach is essential - one size does not fit all.

The development and piloting of the REnal specific Advanced Communication Training (REACT) programme to improve Advance Care Planning for renal patients.

BACKGROUND: In recent years, the End-Stage Kidney Disease population has increased and is ever more frail, elderly and co-morbid. A care-focused approach needs to be incorporated alongside the disease focus, to identify those who are deteriorating and improve communication about preferences and future care. Yet many renal professionals feel unprepared for such discussions. AIM: To develop and pilot a REnal specific Advanced Communication Training (REACT) programme to address the needs of End-Stage Kidney Disease patients and renal professionals. DESIGN: Two-part study: (1) development of the REnal specific Advanced Communication Training programme informed by multi-professional focus group and patient survey and (2) piloting of the programme. SETTING/PARTICIPANTS: The REnal specific Advanced Communication Training programme was piloted with 16 participants (9 renal nurses/health-care assistants and 7 renal consultants) in two UK teaching hospitals. RESULTS: The focus group identified the need for better information about end-of-life phase, improved awareness of patient perspectives, skills to manage challenging discussions, 'hands on' practice in a safe environment and follow-up to discuss experiences. The patient survey demonstrated a need to improve communication about concerns, treatment plans and decisions. The developed REnal specific Advanced Communication Training programme was acceptable and feasible and was associated with a non-significant increase in confidence in communicating about end-of-life issues (pre-training: 6.6/10, 95% confidence interval: 5.7-7.4; post-training: 6.9/10, 95% confidence interval: 6.1-7.7, unpaired t-test - p = 0.56), maintained at 3 months. CONCLUSION: There is a need to improve end-of-life care for End-Stage Kidney Disease patients, to enable them to make informed decisions about future care. Challenges include prioritising communication training among service providers.

How common are palliative care needs among older people who die in the emergency department?

OBJECTIVE: To determine the prevalence and nature of palliative care needs in people aged 65 years or more (65+) who die in emergency departments (EDs). METHODS: This was a retrospective analysis of routine hospital data from two EDs in South London. Patients aged 65+ living in the hospitals' catchment area who died in the ED during a 1 year period (2006-2007) were included. Palliative care needs identified by diagnosis and symptoms, and problems likely to benefit from palliative care documented in clinical records 3 months prior to the final ED attendance were extracted. RESULTS: Over 1 year, 102 people aged 65+ died in the ED, frequently following an acute event (n = 90). 63.7% presented out of hours. 98/102 were admitted by ambulance, over half (n = 59) from home. Half (n = 50) had attended the same ED or been admitted to the same hospital in the previous 12 months. Over half (58/102) presented with diagnoses that signalled palliative care need. Of these, 29 had recorded symptoms a week before death and 28 had complex social issues 3 months prior to death. Only eight were known to palliative care services. CONCLUSIONS: There is considerable palliative care need among older people who ultimately died in the ED, of whom only a minority were known to palliative care services in this study. Previous ED and hospital admission suggest opportunities for referral and forward planning. More older people in need of palliative care must be identified and managed earlier to avoid future undesired admissions and deaths in hospital.

Characteristics, Symptom Management, and Outcomes of 101 Patients With COVID-19 Referred for Hospital Palliative Care.

Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 inpatients with confirmed COVID-19 referred to hospital palliative care. Patients (64 men, median [interquartile range {IQR}] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]) were most frequently referred for end-of-life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23), and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median [range] dose/24 hours) were opioids (morphine, 10 [5-30] mg; fentanyl, 100 [100-200] mcg; alfentanil, 500 [150-1000] mcg) and midazolam (10 [5-20] mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family, and clinicians. At March 30, 2020, 75 patients had died; 13 been discharged back to team, home, or hospice; and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum data set for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.

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.

The Second Conversation project: -Improving training in end of life care communication among junior doctors.

Junior doctors describe a need for greater support and training in end of life care (EoLC) communication skills. The Second Conversation project was designed by a multi-professional steering group as a workplace based training intervention for junior doctors to improve their skills and confidence in undertaking EoLC conversations. Qualitative interviews were carried out with 11 junior doctors and five senior doctors across two sites who took part in, or facilitated, a 'second conversation'. This is a three-step training intervention that involves 1) observation - the junior doctor observes an EoLC conversation between a senior doctor and patient/caregiver; 2) direct experience - the junior doctor undertakes a follow-up second conversation with the patient/caregiver; and 3) reflection - the junior doctor discusses and reflects on the experience with a senior colleague. Interviews were analysed using framework analysis and findings informed iterative changes to the intervention and its implementation using 'Plan, Do, Study, Act' cycles. Benefits that were identified included the flexibility of the intervention and its positive impact on the confidence and skills of junior doctors. The Second Conversation was felt to be of most value to newly qualified doctors and worked well on wards where length of stay was longer and EoLC conversations frequently happen. Further evaluation and exploration of patient and caregiver experiences is required.

Symptoms in advanced renal disease: a cross-sectional survey of symptom prevalence in stage 5 chronic kidney disease managed without dialysis.

BACKGROUND: Numbers of patients with stage 5 chronic kidney disease (CKD) managed conservatively (without dialysis) are increasing steadily but prevalence and severity of symptoms in this population are not yet known. AIM: To describe symptom prevalence, symptom severity, and total symptom burden in patients with stage 5 CKD managed conservatively. METHOD: A cross-sectional survey of patients with stage 5 CKD managed conservatively, in three U.K. renal units. Symptoms were assessed using the patient-completed Memorial Symptom Assessment Scale Short Form (MSAS-SF), with additional renal symptoms. RESULTS: Sixty-six patients were recruited (response rate, 62%), with mean age 82 years (standard deviation [SD] +/- 6.6), and mean estimated glomerular filtration rate 11.2 mL/min (SD +/- 2.8). Symptoms reported by more than one third or 33% of patients were (95% confidence intervals shown in parentheses): lack of energy, 76% (66%-84%); pruritus, 74% (65%-82%); drowsiness, 65% (54%-74%); dyspnea, 61% (50%-70%); edema, 58% (47%-66%); pain, 53% (42%-63%); dry mouth, 50% (39%-60%); muscle cramps, 50% (39%-60%); restless legs, 48% (38%-58%); lack of appetite, 47% (37%-58%); poor concentration, 44% (34%-54%); dry skin, 42% (32%-53%); sleep disturbance, 41% (32%-51%); and constipation, 35% (26%-45%). Mean number of symptoms reported on MSAS-SF was 11.58 (SD +/- 5.2), with an additional 2.77 (SD +/- 1.7) renal symptoms. Symptoms were also most severe in the more prevalent symptoms. Pain was an exception, with disproportionately greater severity (32% of all patients reported moderate/severe pain). CONCLUSION: This study demonstrates that patients with stage 5 CKD have considerable symptom control needs, similar to advanced cancer populations, but with different patterns of individual symptoms and severity, particularly pain. Implications for palliative care, hospice, and nephrology services in planning and providing care are discussed.

Supporting patients with uncertain recovery: the use of the AMBER care bundle in an acute hospital.

OBJECTIVES: Patients who are deteriorating, with uncertain recovery and with a short prognosis often have complex needs. The AMBER care bundle systematically manages these patients by promoting consistent communication and care planning. To describe how the AMBER bundle is applied in a UK hospital. To identify factors affecting the use of the AMBER bundle in patients who subsequently died. To gain preliminary data with regard to potential markers of deterioration in groups less frequently supported by AMBER METHODS: Retrospective review of electronic case notes for all deaths over 11 months on five inpatient wards where AMBER was implemented. RESULTS: N=149. Median age 80, IQR 72-87. Admission diagnoses: cancer (25%), non-cancer (31%), multimorbidity (44%). 38% were supported by AMBER. Patients with cancer were more frequently supported by AMBER (62% vs 30% p<0.001). Illness trajectory was defined a priori as 'predictable gradual' (40%), 'predictable rapid' (22%), 'unpredictable' (21%) or 'sudden death' (17%). 'Predictable gradual' deterioration resulted in more frequent support by AMBER (62% vs 21%, p<0.001). Patients were supported by AMBER after median 10 days of admission (IQR 5-17 days), and died median 9 days later (IQR 3-15 days). Patients with multimorbidity or unpredictable deterioration were less frequently supported by AMBER. Potential markers of deterioration were acute kidney injury, delirium, falls and comorbidity. CONCLUSIONS: The use of the AMBER care bundle is affected by illness trajectory and diagnosis. Future work should clarify predictors of deterioration in patients with an unpredictable course.

Improving care for patients whose recovery is uncertain. The AMBER care bundle: design and implementation.

INTRODUCTION: Despite preferences to the contrary, 53% of deaths in England occur in hospital. Difficulties in managing clinical uncertainty can result in delayed recognition that a person may be approaching the end of life, and a failure to address his/her preferences. Planning and shared decision-making for hospital patients need to improve where an underlying condition responds poorly to acute medical treatment and there is a risk of dying in the next 1-2 months. This paper suggests an approach to improve this care. INTERVENTION: A care bundle (the AMBER care bundle) was designed by a multiprofessional development team, which included service users, utilising the model for improvement following an initial scoping exercise. The care bundle includes two identification questions, four subsequent time restricted actions and systematic daily follow-up. CLINICAL IMPACT: This paper describes the development and implementation of a care bundle. From August 2011 to July 2012, 638 patients received care supported by the AMBER care bundle. In total 42.8% died in hospital and a further 14.5% were readmitted as emergencies within 30 days of discharge. Clinical outcome measures are in development. CONCLUSIONS: It has been possible to develop a care bundle addressing a complex area of care which can be a lever for cultural change. The implementation of the AMBER care bundle has the potential to improve care of clinically uncertain hospital patients who may be approaching the end of life by supporting their recognition and prompting discussion of their preferences. Outcomes associated with its use are currently being formally evaluated.

Improving care for patients whose recovery is uncertain. The AMBER care bundle: design and implementation.

INTRODUCTION: Despite preferences to the contrary, 53% of deaths in England occur in hospital. Difficulties in managing clinical uncertainty can result in delayed recognition that a person may be approaching the end of life, and a failure to address his/her preferences. Planning and shared decision-making for hospital patients need to improve where an underlying condition responds poorly to acute medical treatment and there is a risk of dying in the next 1-2 months. This paper suggests an approach to improve this care. INTERVENTION: A care bundle (the AMBER care bundle) was designed by a multiprofessional development team, which included service users, utilising the model for improvement following an initial scoping exercise. The care bundle includes two identification questions, four subsequent time restricted actions and systematic daily follow-up. CLINICAL IMPACT: This paper describes the development and implementation of a care bundle. From August 2011 to July 2012, 638 patients received care supported by the AMBER care bundle. In total 42.8% died in hospital and a further 14.5% were readmitted as emergencies within 30 days of discharge. Clinical outcome measures are in development. CONCLUSIONS: It has been possible to develop a care bundle addressing a complex area of care which can be a lever for cultural change. The implementation of the AMBER care bundle has the potential to improve care of clinically uncertain hospital patients who may be approaching the end of life by supporting their recognition and prompting discussion of their preferences. Outcomes associated with its use are currently being formally evaluated.

How common are palliative care needs among older people who die in the emergency department?

OBJECTIVE: To determine the prevalence and nature of palliative care needs in people aged 65 years or more (65+) who die in emergency departments (EDs). METHODS: This was a retrospective analysis of routine hospital data from two EDs in South London. Patients aged 65+ living in the hospitals' catchment area who died in the ED during a 1 year period (2006-2007) were included. Palliative care needs identified by diagnosis and symptoms, and problems likely to benefit from palliative care documented in clinical records 3 months prior to the final ED attendance were extracted. RESULTS: Over 1 year, 102 people aged 65+ died in the ED, frequently following an acute event (n=90). 63.7% presented out of hours. 98/102 were admitted by ambulance, over half (n=59) from home. Half (n=50) had attended the same ED or been admitted to the same hospital in the previous 12 months. Over half (58/102) presented with diagnoses that signalled palliative care need. Of these, 29 had recorded symptoms a week before death and 28 had complex social issues 3 months prior to death. Only eight were known to palliative care services. CONCLUSIONS: There is considerable palliative care need among older people who ultimately died in the ED, of whom only a minority were known to palliative care services in this study. Previous ED and hospital admission suggest opportunities for referral and forward planning. More older people in need of palliative care must be identified and managed earlier to avoid future undesired admissions and deaths in hospital.

Symptoms in the month before death for stage 5 chronic kidney disease patients managed without dialysis.

CONTEXT: There is little evidence on the symptoms experienced by those with advanced (Stage 5) chronic kidney disease (CKD), managed without dialysis, as they approach death. As palliative care extends to noncancer illnesses, understanding symptom prevalence and severity close to death will clarify which symptom interventions are most needed and which elements of (largely cancer-driven) models of palliative care best translate into end-of-life care for this population. OBJECTIVES: To determine symptom prevalence and severity in the last month of life for patients with Stage 5 CKD, managed without dialysis. METHODS: Longitudinal symptom survey in three U.K. renal units, using the patient-completed Memorial Symptom Assessment Scale-Short Form (MSAS-SF). We calculated the prevalence of individual symptoms (with 95% confidence intervals [CI] to reflect sample size), plus MSAS-SF subscales, in the month before death. Comparison is made with previously published data on symptoms in the last month of life in advanced cancer, also measured using the MSAS-SF. RESULTS: Seventy-four patients (mean age: 81 years; standard deviation [SD]: 6.8) were recruited (response rate: 73%); 49 (66%) died during follow-up (mean age: 81 years; SD: 5.7). "Month before death" symptom data were available for 43 (88%) of the 49 participants who died. Median time of data collection was 18 days from death (interquartile range: 12-26 days). More than half had lack of energy (86%; 95% CI: 73%-94%), itch (84%; 70%-93%), drowsiness (82%; 68%-91%), dyspnea (80%; 66%-90%), poor concentration (76%; 61%-87%), pain (73%; 59%-85%), poor appetite (71%; 57%-83%), swelling arms/legs (71%; 57%-83%), dry mouth (69%; 55%-82%), constipation (65%; 50%-78%), and nausea (59%; 44%-73%). Levels of distress correspond to prevalence, with the exception of dyspnea, which was disproportionately more distressing. The median number of symptoms reported was 16.6 (range: 6-27), rising to 20.4 (range: 7-34) if additional renal symptoms were included. On average, psychological distress was moderate (mean MSAS-PSYCH: 1.55) but with wide variation (SD: 0.50; range: 0.17-2.40), suggesting diverse levels of individual distress. The prevalence of both physical and psychological symptoms and the number reported were higher than those in advanced cancer patients in the month before death. CONCLUSION: Stage 5 CKD patients have clinically important physical and psychological symptom burdens in the last month of life, similar or greater than those in advanced cancer patients. Symptoms must be addressed through routine symptom assessment, appropriate interventions, and with pertinent models of end-of-life care.

The experiences of donor families in the hospice.

OBJECTIVES: This study explored the experiences, attitudes and feelings of relatives who consented to donation of corneas of a loved one who had died of cancer. DESIGN: Semi-structured interviews were conducted by a single researcher and qualitatively analysed for systematic identification of themes. SETTING AND PARTICIPANTS: Two specialist palliative care units in Southern England participated. The names of donor families were obtained via transplant coordinators, the local eye bank and hospice records. Ten donor families were interviewed, four to 12 months after their relative's death. RESULTS: The majority of interviewees had thought the deceased was ineligible for donation due to cancer or old age. Approaches regarding donation were generally made by nurses and described as sensitive by relatives. Very few family members would otherwise have considered or raised the subject. Almost all were glad they had agreed to donation although few felt it directly affected their bereavement. A range of motivations for consent was encountered but decisions were very much easier if the deceased's wishes were already known. Most favoured an opt-out system or the right of the family to decide if the deceased's wishes were not known. CONCLUSIONS: Corneal donation is possible for patients dying from cancer. This study indicates that it is generally regarded positively by donor family members. Education of the public and health professionals is necessary to highlight both the eligibility criteria and the need for donation. Families should be encouraged to discuss donation to facilitate respecting individuals' wishes. In the absence of a known decision from the deceased, health professionals should be aware of their responsibility to discuss the issue with the family.