This issue of Medical Clinics, guest edited by Dr. Eric Widera, is devoted to Palliative Care. Articles in this important issue include: Hospice and palliative care: an overview; Goals of care conversations in palliative care: A practical guide; The art and science of prognostication in palliative care; Recognizing and managing polypharmacy in advanced illness; Pain management in those with serious illness; Management of grief, depression, and suicidal thoughts in those with serious illness; Management of respiratory symptoms in those with serious illness; Management of gastrointestinal symptoms inadvanced illness; Management of urgent medical conditions at the end of life; Delirium at the end of life; Options of last resort: palliative sedation, Physician aid in dying and voluntary cessation of eating and drinking; Cannabis for symptom management; and Self-care of physicians caring for patients with serious illness.
Context: Older adults with advanced lung cancer experience high symptom burden at end of life (EOL), yet hospice enrollment often happens late or not at all. Receipt of medications to manage symptoms in the outpatient setting, outside the Medicare hospice benefit, has not been described.
Objectives: We examined patterns of symptom management medication receipt at EOL for older adults who died of lung cancer.
Methods: This retrospective cohort used the Surveillance, Epidemiology, and End Results—Medicare database to identify decedents diagnosed with lung cancer at age 67 years and older between January 2008 and December 2013 who survived six months and greater after diagnosis. Using Medicare Part B and D claims, we identified monthly receipt of outpatient medications for symptomatic management of pain, emotional distress, fatigue, dyspnea, anorexia, and nausea/vomiting. Multivariable logistic regression estimated associations between medication receipt and patient demographic characteristics, comorbidity, and concurrent therapy.
Results: Of the 16,246 included patients, large proportions received medications for dyspnea (70.7%), pain (62.5%), and emotional distress (49.4%), with lower prevalence for other symptoms. Medication receipt increased from six months to one month before death. Women and dual Medicaid enrolled were more likely to receive medications for pain, emotional distress, dyspnea, and nausea/vomiting. Receipt of symptom management medications decreased with increasing age and racial/ethnical minorities.
Conclusion: Symptom management medication receipt was common and increasing toward EOL. Lower use by males, older adults, and nonwhites may reflect poor access or poor patient-provider communication. Further research is needed to understand these patterns and assess adequacy of symptom management in the outpatient setting.
Death rattle occurs during the last days of life, and relatives of those afflicted frequently report that it is very distressful. However, there is no effective treatment for it. The purpose of this study was to investigate the perceptions of Japanese palliative care physicians in clinical practice in Japan. We conducted a nationwide survey of 268 physicians via an anonymous, self-report questionnaire. We assessed pharmacological and non-pharmacological management and anticholinergic agent choice. One hundred eighty-nine physicians (70.5%) returned the questionnaires. Fifty-five participants (29.1%) treating patients with Type-1 (real death rattle) and 36 participants (19%) treating patients with Type-2 (pseudo-death rattle) death rattle reported that they would frequently administer an anticholinergic agent. One-fourth would administer scopolamine butylbromide or scopolamine hydrobromide. In conclusion, more Japanese palliative care physicians thought that anticholinergic agents might be effective for treating Type-1 death rattle rather than Type-2. Further clinical trials of these agents are needed.
There is growing evidence that palliative care supports the needs of patients with advanced lung cancer. Early palliative care referral has been shown to improve quality of life, decrease symptom burden, and help patients better understand their illness. However, access to palliative care specialists is limited. All providers caring for patients with lung cancer should be able to manage basic symptoms and engage in routine discussions about goals of care, prognosis, and suffering. By developing primary palliative care skills, more patients, even those with earlier stages of lung cancer, benefit from better symptom management, communication, support, and quality of life.
Delirium is a prevalent acute neurocognitive condition in patients with progressive life-limiting illness. Delirium remains underdetected; a systematic approach to screening is essential. Delirium at the end of life requires a comprehensive assessment. Consider the potential for reversibility, illness trajectory, patient preference, and goals of care before proceeding with investigations and interventions. Management should be interdisciplinary, and nonpharmacologic therapy is fundamental. For patients with refractory and severe agitation or perceptual disturbance, judicious use of medication may also be required. Carers and family should be seen as partners in care and be involved in shared decision making about care.
Palliative medicine is specialized medical care for people with serious illness. Serious illness is one with high risk of mortality that negatively affects quality of life or function or is burdensome in symptoms, treatments, or caregiver stress. Palliative care improves symptom management and addresses the needs of patients and families, resulting in improved patient and caregiver quality of life and reduced symptom burden and health care utilization. Hospice is palliative care for patients with a prognosis of 6 months or less and is appropriate when goals are to avoid hospitalization and maximize time at home for patients who are dying.
Respiratory symptoms are common in patients living with serious illness, both in cancer and nonmalignant conditions. Common symptoms include dyspnea (breathlessness), cough, malignant pleural effusions, airway secretions, and hemoptysis. Basic management of respiratory symptoms is within the scope of primary palliative care. There are pharmacologic and nonpharmacologic approaches to treating respiratory symptoms. This article provides clinicians with treatment approaches to these burdensome symptoms.
Symptom management and end-of-life care are core skills for all physicians, although in ordinary times many anesthesiologists have fewer occasions to use these skills. The current coronavirus disease (COVID-19) pandemic has caused significant mortality over a short time and has necessitated an increase in provision of both critical care and palliative care. For anesthesiologists deployed to units caring for patients with COVID-19, this narrative review provides guidance on conducting goals of care discussions, withdrawing life-sustaining measures, and managing distressing symptoms.
The current coronavirus disease 2019 (COVID-19) pandemic has put significant strain on all aspects of health care delivery, including palliative care services. Given the high mortality from this disease, particularly in the more vulnerable members of society, it is important to examine how best to deliver a high standard of end-of-life care during this crisis. This case series collected data from two acute hospitals examining the management of patients diagnosed with COVID-19 who subsequently died (n = 36) and compared this with national and local end-of-life audit data for all other deaths. Our results demonstrated a shorter dying phase (38.25 hours vs. 74 hours) and higher rates of syringe driver use (72% vs. 33% in local audits), although with similar average mediation doses. Of note was the significant heterogeneity in the phenotype of deterioration in the dying phase, two distinct patterns emerged, with one group demonstrating severe illness with a short interval between symptom onset and death and another group presenting with a more protracted deterioration. This brief report suggests a spectrum of mode of dying. Overall, the cohort reflects previously described experiences, with increased frailty (median Clinical Frailty Scale score of 5) and extensive comorbidity burden. This brief report provides clinicians with a contemporaneous overview of our experience, knowledge, and pattern recognition when caring for people with COVID-19 and highlights the value of proactive identification of patients and risk of deterioration and palliation.
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 in-patients with confirmed COVID-19 referred to hospital palliative care. Patients (64 male, median [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-maximum dose/24h) were opioids (morphine, 10-30mg; fentanyl, 100-200mcg; alfentanil 500-1000 mcg) and midazolam (10-20mg). 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 dataset for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.
Although much focus has been on assessing the severity of COVID-19, general practitioners and other community based clinicians also need a working knowledge of symptom management. Symptoms of cough, fever, and breathlessness can be highly distressing even in those who do not have severe disease. Also, treatments for symptoms in severe COVID-19 will be needed for patients whose advance care plan or advance decision to refuse treatment includes a decision not to escalate treatment beyond home based care.
This article summarises key points from the National Institute for Health and Care Excellence (NICE) COVID-19 rapid guideline on managing symptoms (including at the end of life) in the community. The guideline is part of a series of rapid guidelines on COVID-19, developed in collaboration with NHS England and NHS Improvement using interim process and methods. Recommendations are based on evidence and expert opinion, and have been verified as far as possible by NICE.
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Sialorrhea, or relative excess of salivary excretion, is a vexing problem for many patients. This symptom is precipitated by dysfunction in one of two interrelated processes—salivary production and oropharyngeal clearance. While medications primarily precipitate the former, dysphagia, often due to neurologic dysfunction, often causes the latter. This overabundance of saliva coupled with difficulty swallowing can predispose patients to respiratory issues, infections, and poor quality of life. There are, however, a myriad of treatment options that have shown clinical efficacy in treating this dysfunction. The purpose of this article is to present some background and etiology behind sialorrhea as well as present treatment options—non-pharmacologic, pharmacologic, surgical, and radiotherapeutic—that can help to ameliorate symptoms and improve quality of life for patients.
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions.
Aim: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life.
Design: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797).
Data sources: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis.
Results: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals’ attitudes, hospice care, home care, families’ symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals’ demographics, treatment side effects, specialist support, healthcare professionals’ training, health services delivery, home care). Only one study included patients’ views.
Conclusion: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients’ perspective.
Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death.
Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents’ death.
Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis.
Results: nurses’ response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed.
Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
BACKGROUND: The purpose of palliative medicine is to optimize the quality of life of patients with incurable, progressive diseases. The care delivered in actual clinical practice is not uniform and often takes insufficient account of the currently available scientific evidence.
METHODS: In accordance with the methodological directives on systematic literature reviews and consensus-finding that have been issued by the German Oncology Guideline Program (Leitlinienprogramm Onkologie), a nationwide, representative group of experts updated the previously published seven chapters of the S3 (evidence-based and consensus-based) guideline and formulated new recommendations on a further eight topics in palliative care.
RESULTS: Non-drug options for the treatment of fatigue include aerobic exercise and psycho-educative methods, particularly cognitive behavioral therapy. Sleep disturbances can be treated with improved sleep hygiene and relaxation techniques, as well as with drugs: Z substances for short-term and sedating antidepressants for intermediate-term treatment. For nausea and vomiting, the first line of treatment consists of antidopaminergic drugs, such as haloperidol, or drugs with an antido- paminergic effect combined with a further receptor affinity, such as metoclopramide. For patients suffering from malignant intestinal obstruction (MIO), an important con- sideration for further treatment is whether the obstruction is complete or incomplete. Psychotherapeutic interventions are indicated for the treatment of anxiety.
CONCLUSION: Multiple studies have confirmed the benefit of the early integration of palliative care for achieving the goals of better symptom control and maintenance of derate quality of evidence supporting the management of certain symptoms in patients with incurable cancers.
BACKGROUND: Depressive disorders are common among cancer patients. Ketamine can quickly relieve depression, and its subcutaneous administration appears to be as effective as and probably safer than its standard intravenous administration. Herein, we report a case verifying the antidepressant effect of a subcutaneous esketamine formulation.
CASE PRESENTATION: A 65-year-old male with metastatic abdominal tumor reported sadness, weight loss, fatigue, hopelessness, insomnia, inattention, and reduced motivation. His scores on the visual analogical scale for pain and Montgomery-Asberg depression rating scale were 8/10 and 30/60, respectively.
POSSIBLE COURSES OF ACTION: Monoaminergic antidepressants are effective, but their response is slow for end-of-life care.
FORMULATION OF A PLAN: Esketamine was preferred because it possibly contributes to pain relief. It can repeatedly be infused intravenously, but was subcutaneously administered twice a week for safety reasons.
OUTCOME: The patient showed continuous mood improvement, achieving depression remission on day 7. Pain relief was observed but without stability. His vital signs remained stable, and he remained calm, without major complaints.
LESSONS FROM THE CASE: Repeated subcutaneous esketamine injections are possibly safe and effective in pain and depression relief in palliative care cancer patients.
VIEW ON RESEARCH PROBLEMS, OBJECTIVES, OR QUESTIONS GENERATED BY THE CASE: Placebo-controlled studies with similar cases are needed to establish efficacy and safety.
Opioids are an effective treatment for patients with intractable pain. Long-term administration of opioids for pain relief is being delivered by an increasing number of medical providers in the United States including primary care physicians and nonspecialists. One common complication of chronic opioid use is sleep-disordered breathing which can result in various morbidities as well as an increase in all-cause mortality. It is important for providers to understand the relationship between opioids and sleep-disordered breathing as well as methods to improve diagnosis and strategies for treatment. This review aims to update clinicians on the mechanism, diagnosis, and treatment of opioid-related sleep-disordered breathing in order to improve the quality of care for patients with chronic pain.
Background: Large, nationally representative studies of the association between quality of life and survival time in cancer patients in specialized palliative care are missing.
Aim: The aim of this study was to investigate whether symptoms/problems at admission to specialized palliative care were associated with survival and if the symptoms/problems may improve prediction of death within 1 week and 1 month, respectively.
Setting/participants: All cancer patients who had filled in the EORTC QLQ-C15-PAL at admission to specialized palliative care in Denmark in 2010–2017 were included through the Danish Palliative Care Database. Cox regression was used to identify clinical variables (gender, age, type of contact (inpatient vs outpatient), and cancer site) and symptoms/problems significantly associated with survival. To test whether symptoms/problems improved survival predictions, the overall accuracy (area under the receiver operating characteristic curve) for different prediction models was compared. The validity of the prediction models was tested with data on 5,508 patients admitted to palliative care in 2018.
Results: The study included 30,969 patients with an average age of 68.9 years; 50% were women. Gender, age, type of contact, cancer site, and most symptoms/problems were significantly associated with survival time. The predictive value of symptoms/problems was trivial except for physical function, which clearly improved the overall accuracy for 1-week and 1-month predictions of death when added to models including only clinical variables.
Conclusion: Most symptoms/problems were significantly associated with survival and mainly physical function improved predictions of death. Interestingly, the predictive value of physical function was the same as all clinical variables combined (in hospice) or even higher (in palliative care teams).
Background: Increased awareness of the clinical course of nursing home residents with advanced dementia and advance care planning (ACP) has become the cornerstone of good palliative care.
Objective: The aim of our study is to describe changes in ACP in the form of physician treatment orders (PTOs), symptom prevalence and possible burdensome interventions among nursing home (NH) residents who died between 2004–2009 and 2010–2013
Methods: Retrospective study
Results: The number of PTOs regarding forgoing antibiotics or parenteral antibiotics, forgoing artificial nutrition or hydration or forgoing hospitalisation doubled between 2004–2009 and 2010–2013 (38.1% vs. 64.9%, p < 0.001; 40.0% vs. 81.7%, p < 0.001; 28.1% vs. 69.5%, p < 0.001, respectively). PTOs were also done significantly earlier in 2010–2013 than in 2004–2009. The prevalence of distressing symptoms and possible burdensome interventions remained unchanged, although the prevalence of consistency with the PTOs was high.
Conclusion: Despite the increased number of PTOs, this had little effect on symptom prevalence and possible burdensome interventions experienced by NH residents in the last days of life.