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BACKGROUND: Older people account heavily for palliative care needs at the population level and are growing in number as the population ages. There is relatively little high-quality data on symptom burden and quality of life, since these data are not routinely collected, and this group are under-recruited in primary research. It is unclear which measurement tools are best suited to capture burdens and experience. METHODS: We recruited a cohort of 221 patients aged 75 + years with poor prognosis who had an unplanned admission via the emergency department in a large urban hospital in England between 2019 and 2020. Risk of dying was assessed using the CriSTAL tool. We collected primary data and combined these with routine health records. Baseline clinical data and patient reported quality of life outcomes were collected on admission and reassessed within the first 72 h of presentation using two established tools: EQ-5D-5 L, EQ-VAS and the Integrated Palliative Outcomes Scale (IPOS). RESULTS: Completion rate was 68% (n = 151) and 33.1% were known to have died during admission or within 6 months post-discharge. The vast majority (84.8%) reported severe difficulties with at least one dimension of EQ-5D-5 L at baseline and improvements in EQ-VAS observed at reassessment in 51.7%. The baseline IPOS revealed 78.2% of patients rating seven or more items as moderate, severe or overwhelming, but a significant reduction (-3.6, p < 0.001) in overall physical symptom severity and prevalence was also apparent. No significant differences were noted in emotional symptoms or changes in communication/practical issues. IPOS total score at follow up was positively associated with age, having comorbidities (Charlson index score > = 1) and negatively associated with baseline IPOS and CriSTAL scores. CONCLUSION: Older people with poor prognosis admitted to hospital have very high symptom burden compared to population norms, though some improvement following assessment was observed on all measures. These data provide valuable descriptive information on quality of life among a priority population in practice and policy and can be used in future research to identify suitable interventions and model their effects.
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Cuidados Paliativos , Qualidade de Vida , Idoso , Humanos , Qualidade de Vida/psicologia , Estudos de Coortes , Carga de Sintomas , Assistência ao Convalescente , Medicina Estatal , Alta do Paciente , Hospitais , Inquéritos e QuestionáriosRESUMO
Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings.
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Prestação Integrada de Cuidados de Saúde , Insuficiência Renal Crônica , Insuficiência Renal , Humanos , Rim , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapia , Tratamento ConservadorRESUMO
The COVID-19 pandemic compounded isolation for patients through social distancing measures and staff shortages. We were concerned about the impact of COVID-19 on the quality of care provided at end-of-life in 2021 in a national cancer centre, and instigated the first ever review of the care of the dying. Quality of care was assessed retrospectively using a validated instrument developed by the United Kingdom's National Quality Board. Sixty-six patient deaths occurred in our cancer centre in 2021. The 'risk of dying' was documented in 65.2% of records. Palliative care services were involved in 77%, and pastoral care in 10.6%. What was important to the patient was documented in 24.2%. The 'quality-of-death' score was satisfactory for most but poor in 21.2%. Our study prompted change, including appointment of an end-of-life coordinator, development of a checklist to ensure comprehensive communication, expansion of the end-of-life committee to include junior doctors, and regular audit.
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Background: Pheochromocytoma is a tumor arising from adrenomedullary chromaffin cells. Five-year survival with malignant pheochromocytoma is <50%. Difficulty arises when prescribing for patients, given the potential to precipitate catecholamine crisis, a life-threatening emergency. Clinical Case: A 60-year-old woman presented with abdominal fullness and discomfort. Liver biopsy confirmed pheochromocytoma. Upper and lower abdominal pain was noted and described as "dragging" and "sharp" in nature. The Endocrine Society Clinical Practice guideline for management of pheochromocytoma recommends avoidance of morphine and codeine. Subcutaneous fentanyl was tolerated with good effect, and a continuous subcutaneous infusion was commenced. She was transitioned to a fentanyl patch and her pain was controlled. Conclusion: Symptom control in patients with pheochromocytoma remains challenging. Common opioid analgesics, dopamine-receptor antagonists, corticosteroids, and tricyclic antidepressants are medications known to precipitate a crisis. There is a lack of published research to support the safe prescribing of medications for these patients.
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Neoplasias das Glândulas Suprarrenais , Feocromocitoma , Humanos , Feminino , Pessoa de Meia-Idade , Fentanila/uso terapêutico , Feocromocitoma/tratamento farmacológico , Feocromocitoma/diagnóstico , Neoplasias das Glândulas Suprarrenais/tratamento farmacológico , Neoplasias das Glândulas Suprarrenais/diagnóstico , Analgésicos Opioides/uso terapêutico , Dor Abdominal/tratamento farmacológicoRESUMO
OBJECTIVE: To explore the impact of the death of a patient in the haemodialysis unit on fellow patients. METHODS: We interviewed patients on dialysis in a tertiary dialysis centre using semistructured interviews. We purposively sampled patients who had experienced the death of a fellow patient. After interviews were transcribed, they were thematically analysed by independent members of the research team using inductive analysis. Input from the team during analysis ensured the rigour and quality of the findings. RESULTS: 10 participants completed the interviews (6 females and 4 males with an age range of 42-88 years). The four core themes that emerged from the interviews included: (1) patients' relationship to haemodialysis, (2) how patients define the haemodialysis community, (3) patients' views on death and bereavement and (4) patients' expectations around death in the dialysis community. Patients noticed avoidance behaviour by staff in relation to discussing death in the unit and would prefer a culture of open acknowledgement. CONCLUSION: Staff acknowledgement of death is of central importance to patients on haemodialysis who feel that the staff are part of their community. This should guide the development of appropriate bereavement support services and a framework that promotes the provision of guidance for staff and patients in this unique clinical setting. However, the authors acknowledge the homogenous sample recruited in a single setting may limit the transferability of the study. Further work is needed to understand diverse patient and nurse experiences and perceptions when sharing the knowledge of a patient's death and how they react to loss.
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Luto , Assistência Terminal , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Unidades Hospitalares de Hemodiálise , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Diálise RenalRESUMO
BACKGROUND: COVID-19 has tragically resulted in over 2.5 million deaths globally. Despite this, there is a lack of research on how to care for patients dying of COVID-19, specifically pharmacological management of symptoms. AIM: The aim was to determine the dose ranges of pharmacological interventions commonly used to manage symptoms in adult patients dying of COVID-19, establish how effectiveness of these interventions was measured, and whether the pharmacological interventions were effective. DESIGN: This was a rapid systematic review with narrative synthesis of evidence, prospectively registered on PROSPERO (ID: CRD42020210892). DATA SOURCES: We searched MEDLINE, EMBASE, CINAHL via the NICE Evidence Health Databases Advanced Search interface; medRxiv; the Cochrane COVID-19 Study Register; and Google Scholar with no date limits. We included primary studies which documented care of patients dying of COVID-19 under the care of a specialist palliative care team. RESULTS: Seven studies, documenting the care of 493 patients met the inclusion criteria. Approximately two thirds of patients required a continuous subcutaneous infusion with median doses of 15 mg morphine and 10 mg midazolam in the last 24 h of life. Four studies described effectiveness by retrospective review of documentation. One study detailed the effectiveness of individual medications. CONCLUSIONS: A higher proportion of patients required continuous subcutaneous infusion than is typically encountered in palliative care. Doses of medications required to manage symptoms were generally modest. There was no evidence of a standardised yet holistic approach to measure effectiveness of these medications and this needs to be urgently addressed.
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COVID-19 , Adulto , Humanos , Morfina , Cuidados Paliativos , Estudos Retrospectivos , SARS-CoV-2RESUMO
BACKGROUND: Calciphylaxis is a rare condition usually seen in patients with end-stage renal disease. Pain is a hallmark of this condition and can be extremely difficult to control. Anecdotal data suggests that pain management in calciphylaxis is challenging with variable approaches across the United Kingdom (UK) and internationally. A knowledge and practice survey was conducted to establish current practice in the management of pain in patients with calciphylaxis, in the UK. Based on the results and clinical experience the authors suggest a clinical practice guideline. METHODS: An online questionnaire was circulated among physicians (renal and palliative care) involved in the management of pain in calciphylaxis. The questionnaire included a mix of open-ended questions and questions with drop down options. RESULTS: One hundred and six clinicians responded to the survey of which 60 (57%) respondents were from palliative medicine; the remaining 46 (43%) were from renal medicine. 31 (30%) respondents across both specialties had not encountered any patients with a diagnosis of calciphylaxis (renal-2, palliative care-29). A referral to the palliative care team was undertaken by 18% of renal physicians, 32% referred to the pain team and 50% referred to both. Only 3% of the palliative medicine respondents indicated that they had received a referral from the renal team at the time of diagnosis. Opioids were the preferred initial drug of choice for the management of all types of pain. Paracetamol was universally selected as the preferred first-choice adjuvant agent for management of all types of pain. The importance of advance care planning was highlighted with 72% undertaking advanced care planning discussions often or most of the time. CONCLUSION: There was wide variation in the current practice of pain management in patients with calciphylaxis, with variation between renal specialists and palliative care specialists. Referral to specialists in pain management is not universal despite the severe nature of the pain experienced by patients with calciphylaxis. The data generated has facilitated the development of a clinical practice guideline to support complex pain management in a group of patients with multiple comorbidities.
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Analgésicos não Narcóticos/uso terapêutico , Analgésicos Opioides/uso terapêutico , Calciofilaxia/terapia , Falência Renal Crônica/terapia , Dor/tratamento farmacológico , Padrões de Prática Médica , Acetaminofen/uso terapêutico , Planejamento Antecipado de Cuidados , Amitriptilina/uso terapêutico , Analgésicos/uso terapêutico , Dor Irruptiva/tratamento farmacológico , Dor Irruptiva/etiologia , Calciofilaxia/etiologia , Gabapentina/uso terapêutico , Humanos , Falência Renal Crônica/complicações , Nefrologia , Dor/etiologia , Manejo da Dor , Dor Processual/tratamento farmacológico , Medicina Paliativa , Pregabalina/uso terapêutico , Encaminhamento e Consulta , Inquéritos e Questionários , Reino UnidoRESUMO
OBJECTIVES: Optimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC. METHODS: An electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams. RESULTS: 35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge. CONCLUSIONS: Few members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.
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Introduction Experience with the use of patient-reported outcome measures such as EQ-5D and the symptom module of the Palliative care Outcome Scale-Renal Version (POS-S Renal) as mortality prediction tools in hemodialysis is limited. Methods A prospective survival study of people receiving hemodialysis (N = 362). The EQ-5D and the POS-S Renal were used to assess symptom burden and self-rated health (with a self-rated component). Participants were followed from instrument completion to death or study end. Competing risks survival analysis was used to evaluate associations with time to death, with renal transplant as a competing risk. Findings 32% (N = 116) of participants died over a median (25th-75th centile) of 2.6 (1.41-3.38) years. Factors most notably associated with mortality adjusted hazard ratio (95%CI) included: lower EQ VAS score 2.7 (1.4, 5.2) P = 0.004 (lowest tertile), higher POS-S Renal score 2.4 (1.3, 4.3) P = 0.004 (highest tertile), and lower EQ-5D score 2.6 (1.3, 5.3) P = 0.01 (lowest tertile) as well as the presence of: "problems with mobility?" 2 (1.1, 3.3) P = 0.01, or "problems with usual activities?" 2.1 (1.4, 3.3), P < 0.001. After age adjustment area under the receiver operating curves (AUC) (95%CI) for mortality were: 0.71 (0.62, 0.79) for EQ VAS score, 0.71 (0.63, 0.80) for POS-S Renal-S Renal score, and 0.76 (0.68, 0.84) for EQ-5D score. AUC 95%CI was highest for our fourth model at 0.79 (0.72, 0.86) comprised of individual elements from both instruments and established risk factors. Discussion EQ VAS scores and predictive models based on combinations of elements from the POS-S Renal and EQ-5D instruments may aid in mortality discrimination and possibly in the delivery of supportive care services.
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Diálise Renal/métodos , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida , Diálise Renal/mortalidade , Inquéritos e Questionários , Análise de SobrevidaRESUMO
CONTEXT: The international cohort of hemodialysis patients is aging and increasing in number. Nephrologists have a therapeutic relationship with their patients that may span decades. Often overlooked components of chronic disease management include symptom control and assessment of health-related quality of life (HRQoL). OBJECTIVES: This study describes the symptom profile of a large cohort of patients with end-stage renal disease on hemodialysis in England and Ireland and evaluates how symptom burden and other factors influence quality-of-life scores. METHODS: A prospective cross-sectional observational study of hemodialysis patients was conducted in Ireland and England during 2011 and 2012. Two validated clinical tools were used to determine HRQoL and symptom burden. Demographic and clinical data were examined, and regression analysis was used to determine associations with HRQoL scores. RESULTS: A total of 893 patients on hemodialysis (mean [SD] age 64 [16] years) had a high symptom burden and poor HRQoL compared with population norms. Specifically, 64% of patients reported pain (95% confidence interval 61%-67%) and 79% reported weakness (95% confidence interval 75%-81%). A total of 43 percent of patients reported between six and 10 symptoms in the week preceding the survey. HRQoL was significantly and independently associated with poor mobility and pain and remained significant after adjusting for variations in clinical characteristics. Being listed on a transplant wait-list register was positively associated with HRQoL. CONCLUSION: These findings illustrate the high symptom burden and poor HRQoL of the hemodialysis population. Emphasis during clinical reviews on pain assessment and on assessing mobility plus interventions, such as pain management and physiotherapy/occupational therapy, are practical ways for renal teams to help improve patients' quality of life.
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Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Qualidade de Vida , Diálise Renal/psicologia , Idoso , Efeitos Psicossociais da Doença , Estudos Transversais , Inglaterra/epidemiologia , Feminino , Humanos , Irlanda/epidemiologia , Falência Renal Crônica/mortalidade , Falência Renal Crônica/fisiopatologia , Masculino , Pessoa de Meia-Idade , Dor/mortalidade , Dor/fisiopatologia , Dor/psicologia , Cuidados Paliativos/psicologia , Testes Psicológicos , Análise de Regressão , Índice de Gravidade de DoençaAssuntos
Antipruriginosos/uso terapêutico , Prurido/tratamento farmacológico , Talidomida/uso terapêutico , Idoso , Antipruriginosos/efeitos adversos , Carcinoma Pulmonar de Células não Pequenas/complicações , Evolução Fatal , Feminino , Humanos , Imunossupressores/efeitos adversos , Imunossupressores/uso terapêutico , Neoplasias Pulmonares/complicações , Cuidados Paliativos , Prurido/etiologia , Risco , Talidomida/efeitos adversos , Resultado do TratamentoRESUMO
With advances in cancer management, patients are living with the long-term sequelae of both cancer and its treatment. This era of cancer survivorship poses unique challenges to the interdisciplinary cancer team in terms of management and prevention of treatment-related toxicities. This paper describes the case of a 55-year-old patient with neurocognitive disturbance as a result of prophylactic cranial irradiation (PCI). Five years after a diagnosis of small cell lung cancer, she is now an inpatient at a specialist palliative care unit. The current evidence for PCI and for potentially modifiable risk factors for neurocognitive disturbance as a consequence of PCI is explored.