Covid-19 is officially a pandemic. It is a novel infection with serious clinical manifestations, including death, and it has reached at least 124 countries and territories. Although the ultimate course and impact of Covid-19 are uncertain, it is not merely possible but likely that the disease will produce enough severe illness to overwhelm health care infrastructure. Emerging viral pandemics “can place extraordinary and sustained demands on public health and health systems and on providers of essential community services.” Such demands will create the need to ration medical equipment and interventions.
[Début de l'article]
The Covid-19 pandemic has led to severe shortages of many essential goods and services, from hand sanitizers and N-95 masks to ICU beds and ventilators. Although rationing is not unprecedented, never before has the American public been faced with the prospect of having to ration medical goods and services on this scale.
[Début de l'article]
Background: There is increasing interest in expanding palliative care (PC) services in the community-based outpatient oncology clinic. However, there is a paucity of data on the economics of integrating palliative medicine in this setting.
Objective: Provide scheduling and financial data on PC physician encounters, charges, and reimbursement in a community-based oncology practice.
Design: Retrospective review of billing data and scheduling software at a single practice.
Setting: A community-based oncology practice comprised of 25 medical oncologists in 8 suburban offices. PC physicians were integrated into the practice.
Measurement: Billed PC physician charges were analyzed on an annual basis for a four-year period from initial start-up of the PC clinic on September 2, 2014 to August 31, 2018.
Results: During year 1, a single PC physician saw 483 new patients and 827 follow-up encounters in four different office locations. In year 2, he saw 471 new patients and 1229 follow-up encounters. Actual collected revenue for those 1700 encounters was $228,168. In year 3, a second PC physician was added and services were expanded to a total of six offices. In year 4, two PC physicians billed for 832 new encounters and 2450 follow-up encounters for a total collected revenue of $454,356.
Conclusions: In a suburban community-based oncology practice, a PC physician can support a substantial part of his or her cost to an oncology practice.
Advanced cancer patients are at an increased risk of developing depressive symptoms, which can lead to major depressive disorder and a poor quality of life. It is important that symptoms of depression to be addressed early and frequently throughout the trajectory of the disease process. Depression is underdiagnosed and therefore undertreated in advanced cancer patients. Clinicians often fail to perform regular depression screenings as recommended by the National Comprehensive Cancer Network. Depressive symptoms are overlooked as they tend to overlap with the effects of disease progression and cancer treatments. Patients' complaints of anorexia, chronic pain, and sleep disturbances do not necessarily trigger practitioners to perform depression screenings. African Americans with advanced cancer are at a higher risk of developing depression, but may not identify as depressed due to the stigma of mental health in the black community. Screening tools such as the 2- and 9-item Patient Health Questionnaire, Beck Depression Inventory II, Hospital Anxiety and Depression Scale, and the Distress Thermometer and Problem List are common brief instruments that can screen for depression. Providing early symptom relief of depressive symptoms through psychotherapy and pharmacologic interventions will benefit the patient, family, and caregivers while improving the quality of life throughout the trajectory of the illness.
Background: The Patient Dignity Question (PDQ) is a single question, which directly asks the patient, “What should I know about you as a person to help me take the best care of you that I can?” Research has demonstrated that the PDQ enhances quality health care within an inpatient palliative care setting; however, no research to date has examined the PDQ in an outpatient setting, particularly a psycho-oncology setting.
Objective: The PDQ was administered as part of routine clinical care in an outpatient psycho-oncology clinic to enhance patient-centered care.
Methods: Individuals diagnosed with cancer (n = 66) were referred for individual psychotherapy primarily for anxiety and/or depression. After gathering a thorough patient history during the initial psychology consult, patients were asked the PDQ as it was worded without further prompting. Patient responses were then qualitatively analyzed to measure the most common themes.
Results: The themes expressed by patients in response to the PDQ included Who I Am (59.7%), which referenced individual characteristics and core personality traits, What My Cancer Journey Has Been (21.7%) described how patients' lives have been impacted since receiving a cancer diagnosis, and What I Want to Achieve (18.4%) in which patients described what goals they wanted to achieve in their lives (both general and specific to psychotherapy).
Conclusions: Data from this small pilot study show promise that this brief assessment tool can be readily added to a psychological intake assessment and patients appreciated being asked about their personhood. Incorporating the PDQ into standard psychological care allows patients to be “seen” and helps us to acknowledge the person in the patient.
Surrogate health care decision making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, health care providers, and other members of the health care team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants is sought to assist with complex health care decision making. Clinical ethics consultation is designed to provide a more objective “outside” opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr K., a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and who lacks decisional capacity in regard to his own treatment decision making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.
The Edmonton Symptom Assessment System (Revised) (ESAS-r) contains 9 questions pertaining to symptoms/well-being. It is a standardized patient-reported assessment instrument, but inconsistently used in palliative care. Thus, a problem exists in knowledge translation regarding routine use of the ESAS-r in palliative practice. The objective was to understand clinicians' perspectives on the use of the ESAS-r in palliative care in hospitals and at home. Qualitative focus groups (n = 14 with 46 clinicians) and interviews (n = 24) elicited views regarding use of the ESAS-r in palliative practice. Interpretive description was used as a general approach to this qualitative analysis focused on understanding clinicians' views. Palliative clinicians presented multiple perspectives of the ESAS-r pertaining to their (1) underlying values, (2) disparate purposes, and (3) incommensurate responses toward use in daily practice. Benefits and challenges supported diversity within these themes, highlighting divergence among perspectives and complexity of integrating a standardized tool in patient care. Integration of the ESAS-r in palliative care requires (1) educational support for developing competence; (2) consideration of clinicians' existing, heterogeneous beliefs regarding the use of standardized assessment instruments; and (3) Consultation with multidisciplinary practitioners about optimal ways that ESAS-r results can be used in a person-centered approach to palliative care.
Lorsqu’un jeune étudiant en médecine décide de vivre, de l’intérieur, les joies et les peines d’un service de soins palliatifs, il fait un choix difficile. À distance de l’impératif thérapeutique, partant à la découverte des aspérités d’une humanité en suspens, Amaury Cinquin livre à Laennec une expérience forte. Durant ces semaines, il s’est exercé à l’empathie, a découvert des souffrances apparemment sans issue. Il s’est attaché à comprendre en quoi une certaine organisation institutionnelle permet à tous, soignants et patients, de mieux vivre des situations difficiles. Prenant du recul sur ses études et sa future pratique, il a quitté la Maison Jeanne-Garnier avec un autre regard sur la mort.
In this issue of JAMA, Lee and colleagues examine the association between Physician Orders for Life-Sustaining Treatment (POLST), which involve portable medical orders that document treatment limitations for out-of-hospital emergency care and for limiting overtreatment at the end of life. The authors studied adults with chronic life-limiting illnesses who were hospitalized within the last 6 months of life and who had completed a POLST before their last inpatient admission. Among 1818 patients enrolled, 656 (36%) had POLST orders for “full treatment” and 1162 had orders for either “limited additional interventions” (761 [42%]) or “comfort measures only” (401 [22%]). Among the combined latter 2 groups, 472 (41%) were admitted to the intensive care unit (ICU), 436 (38%) received POLST-discordant intensive care, and 204 (18%) received POLST-discordant life-sustaining treatments, defined as mechanical ventilation, vasoactive infusions, new renal replacement therapy, or cardiopulmonary resuscitation. Patients with cancer or dementia were less likely to receive POLST-discordant intensive care, whereas patients hospitalized for traumatic injuries were more likely to receive POLST-discordant intensive care. These results are sobering.
[Début de l'article]
Importance: Patients with chronic illness frequently use Physician Orders for Life-Sustaining Treatment (POLST) to document treatment limitations.
Objectives: To evaluate the association between POLST order for medical interventions and intensive care unit (ICU) admission for patients hospitalized near the end of life.
Design, Setting, and Participants: Retrospective cohort study of patients with POLSTs and with chronic illness who died between January 1, 2010, and December 31, 2017, and were hospitalized 6 months or less before death in a 2-hospital academic health care system.
Exposures: POLST order for medical interventions (“comfort measures only” vs “limited additional interventions” vs “full treatment”), age, race/ethnicity, education, days from POLST completion to admission, histories of cancer or dementia, and admission for traumatic injury.
Main Outcomes and Measures: The primary outcome was the association between POLST order and ICU admission during the last hospitalization of life; the secondary outcome was receipt of a composite of 4 life-sustaining treatments: mechanical ventilation, vasopressors, dialysis, and cardiopulmonary resuscitation. For evaluating factors associated with POLST-discordant care, the outcome was ICU admission contrary to POLST order for medical interventions during the last hospitalization of life.
Results: Among 1818 decedents (mean age, 70.8 [SD, 14.7] years; 41% women), 401 (22%) had POLST orders for comfort measures only, 761 (42%) had orders for limited additional interventions, and 656 (36%) had orders for full treatment. ICU admissions occurred in 31% (95% CI, 26%-35%) of patients with comfort-only orders, 46% (95% CI, 42%-49%) with limited-interventions orders, and 62% (95% CI, 58%-66%) with full-treatment orders. One or more life-sustaining treatments were delivered to 14% (95% CI, 11%-17%) of patients with comfort-only orders and to 20% (95% CI, 17%-23%) of patients with limited-interventions orders. Compared with patients with full-treatment POLSTs, those with comfort-only and limited-interventions orders were significantly less likely to receive ICU admission (comfort only: 123/401 [31%] vs 406/656 [62%], aRR, 0.53 [95% CI, 0.45-0.62]; limited interventions: 349/761 [46%] vs 406/656 [62%], aRR, 0.79 [95% CI, 0.71-0.87]). Across patients with comfort-only and limited-interventions POLSTs, 38% (95% CI, 35%-40%) received POLST-discordant care. Patients with cancer were significantly less likely to receive POLST-discordant care than those without cancer (comfort only: 41/181 [23%] vs 80/220 [36%], aRR, 0.60 [95% CI, 0.43-0.85]; limited interventions: 100/321 [31%] vs 215/440 [49%], aRR, 0.63 [95% CI, 0.51-0.78]). Patients with dementia and comfort-only orders were significantly less likely to receive POLST-discordant care than those without dementia (23/111 [21%] vs 98/290 [34%], aRR, 0.44 [95% CI, 0.29-0.67]). Patients admitted for traumatic injury were significantly more likely to receive POLST-discordant care (comfort only: 29/64 [45%] vs 92/337 [27%], aRR, 1.52 [95% CI, 1.08-2.14]; limited interventions: 51/91 [56%] vs 264/670 [39%], aRR, 1.36 [95% CI, 1.09-1.68]). In patients with limited-interventions orders, older age was significantly associated with less POLST-discordant care (aRR, 0.93 per 10 years [95% CI, 0.88-1.00]).
Conclusions and Relevance: Among patients with POLSTs and with chronic life-limiting illness who were hospitalized within 6 months of death, treatment-limiting POLSTs were significantly associated with lower rates of ICU admission compared with full-treatment POLSTs. However, 38% of patients with treatment-limiting POLSTs received intensive care that was potentially discordant with their POLST.
Le Colloque Yves Quenneville se tient aux deux ans dans différentes régions du Québec, le plus souvent sous l'égide d'une Maison ou d'une Unité hospitalière de soins palliatifs... Ce XVIIè colloque, organisé conjointement par la Maison Victor Gadbois de Beloeil et la Maison Michel Sarrazin de Québec, se tenait cette année du 25 au 27 septembre 2019.
[Extrait de l'article]
Les personnes hébergées en centre d'hébergement et de soins de longue durée (CHSLD) présentent des problèmes de santé complexes. Les infirmières qui oeuvrent dans ce milieu doivent désormais les accompagner dans les différentes transitions, allant de leur admission jusqu'aux soins palliatifs et de fin de vie. Les soins palliatifs offerts en CHSLD font face à une augmentation importante des taux de décès, ainsi qu'à la nécessité d'optimiser les compétences des infirmières pour répondre aux besoins des personnes qui y sont hébergées. La pratique réflexive (PR) en groupe apparaît comme une approche novatrice dont les résultats semblent positifs pour le développement des compétences professionnelles. A notre connaissance, aucune étude ne s'est intéressée à la PR dans un contexte de soins palliatifs en CHSLD. La présente étude vise donc à évaluer l'influence d'une intervention de PR en groupe sur la perception de compétence en soins palliatifs des infirmières (PCISP) en CHSLD.
BACKGROUND: Legal dispositions for advance care planning (ACP) are available but used by a minority of older adults in Switzerland. Some studies found that knowledge of and perception of those dispositions are positively associated with their higher usage. The objective of the present study is to test the hypothesis of an association between increased knowledge of ACP dispositions and a more positive perception of them.
METHODS: Data collected in 2014 among 2125 Swiss community-dwellers aged 71 to 80 of the Lausanne cohort 65+ (Lc65+), a population-based longitudinal study on aging and frailty. Data collection was conducted through a questionnaire on knowledge, use and perception of lasting power of attorney, advance directives and designation of a health care proxy. Covariables were extracted from the Lc65+ database. Bivariable and multivariable regression analyses assessed the association between level of knowledge and perception.
RESULTS: Half the participants did not know about legal dispositions for ACP; filing rates were 14% for advance directives, 11% for health care proxy and 6% for lasting power of attorney. Level of knowledge about the dispositions was associated with a more positive perception of them, even when adjusting for confounding factors.
CONCLUSION: Although the direction of the association's causality needs more investigation, results indicate that better knowledge on ACP dispositions could improve the perception older people have of them. Communication on dispositions should take into account individual knowledge levels and address commonly enunciated barriers that seem to diminish with increased knowledge.
BACKGROUND: Palliative medicine physicians are challenged by lack of guidance regarding effectiveness and dosing of cannabis products in the setting of their emerging popularity.
OBJECTIVE: The aim of this study was to describe early patterns of tetrahydrocannabinol (THC) and cannabidiol (CBD) use in Florida following passage of the state's first medical marijuana law. We describe here the perceived benefits, side effects, and beliefs expressed by patients in a single outpatient academic palliative medicine practice.
METHODS: A cross-sectional survey was performed of a sequential convenience sample of patients who presented to an outpatient academic palliative medicine clinic over a 3-month period.
RESULTS: In all, 24% (14/58) of respondents reported THC use, with half using THC on a daily basis. Patients reported improvements in pain, appetite, and nausea. In all, 71% (10/14) began using THC after the diagnosis of their chronic illness, and the most common form of usage was vaping. In all, 24% (14/58) of patients reported CBD use. Patients reported improvements in pain, and the most common form of usage was topical application. None of the patients had used CBD prior to the onset of their chronic illness. In all, 21% (3/14) of THC users and 21% (3/14) of CBD users thought that their substance was helping to cure their illness. Individual reported side effects in both groups were minimal.
CONCLUSIONS: Approximately a quarter of outpatient palliative care patients use THC or CBD, often on a daily basis. Palliative care providers should be aware of the frequency, diverse usage, and beliefs behind cannabis product use in this patient population.
Background: The therapeutic landscape in medical oncology continues to expand significantly. Newer therapies, especially immunotherapy, offer the hope of profound and durable responses with more tolerable side effect profiles. Integrating this information into the decision making process is challenging for patients and oncologists. Systemic anticancer treatment within the last thirty days of life is a key quality of care indicator and is one parameter used in the assessment of aggressiveness of care.
Methods: A retrospective review of medical records of all patients previously treated at Goulburn Valley Health oncology department who died between 1 January 2015 and 30 June 2018 was conducted. Information collected related to patient demographics, diagnosis, treatment, and hospital care within the last 30 days of life. These results were presented to the cancer services meeting and a quality improvement intervention program was instituted. A second retrospective review of medical records of all patients who died between 1 July 2018 and 31 December 2018 was conducted in order to measure the effect of this intervention.
Results: The initial audit period comprised 440 patients. 120 patients (27%) received treatment within the last 30 days of life. The re-audit period comprised 75 patients. 19 patients (25%) received treatment within the last 30 days of life. Treatment rates of chemotherapy reduced after the intervention in contrast to treatment rates of immunotherapy which increased. A separate analysis calculated the rate of mortality within 30 days of chemotherapy from the total number of patients who received chemotherapy was initially 8% and 2% in the re-audit period. Treatment within the last 30 days of life was associated with higher use of aggressive care such as emergency department presentation, hospitalisation, ICU admission and late hospice referral. Palliative care referral rates improved after the intervention.
Conclusion: This audit demonstrated that a quality improvement intervention can impact quality of care indicators with reductions in the use of chemotherapy within the last 30 days of life. However, immunotherapy use increased which may be explained by increased access and a better risk benefit balance.
Objectives: This study examines different combinations of informal and formal care use of older adults and investigates whether these combinations differ in terms of need for care (physical and psychological frailty) and enabling factors for informal and formal care use (social and environmental frailty).
Methods: Using cross-sectional data from the Belgian Ageing Studies (survey, N = 38,066 community-dwelling older adults), Latent Class Analysis (LCA) is used to identify combinations of informal and formal care use. Bivariate analyses are used to explore the relationship between the different combinations of care use and frailty.
Results: Latent Class Analysis (LCA) identified 8 different types of care use, which vary in combinations of informal and formal caregivers. Older adults who are more likely to combine care from family and care from all types of formal caregivers are more physically, psychologically and environmentally frail than expected. Older adults who are more likely to receive care only from nuclear family, or only from formal caregivers are more socially frail than expected.
Conclusions: Older adults with a higher need for care are more likely to receive care from different types of informal and formal caregivers. High environmental frailty and low social frailty are related with the use of care from different types of informal and formal caregivers. This study confirms that informal care can act as substitute for formal care. However, this substitute relationship becomes a complementary relationship in frail older adults. Policymakers should take into account that frailty in older adults affects the use of informal and formal care.
BACKGROUND: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care.
OBJECTIVE: Conduct a MT intervention to determine intervention acceptability and initial effects on ratings of pain, worry reduction, and quality of life.
DESIGN: Pre-post single group pilot study.
SETTING/SUBJECTS: Eight children with cancer (age 10-17) and one of their parents were recruited from a palliative care service.
PROCEDURE/MEASUREMENTS: Baseline (one week prior to intervention): demographics, MT expectations, QOL, and pain measures. Intervention (one month): MT was provided once per week, with children's pain and worry ratings occurring immediately before and after each MT session. Follow Up (4-6 weeks after baseline): QOL, pain, and MT/study acceptability questionnaires.
RESULTS: Participants reported significant decreases in pain following two MT sessions, and worry following one session. No significant changes in pain symptoms and QOL were found between baseline and follow up. Participants positively endorsed the study and the MT intervention, and there were no adverse effects reported.
CONCLUSIONS: MT may lead to immediate decreases in pain and worry in children with cancer who are receiving palliative care, however the effects may not be sustained long term. Difficulties regarding protocol feasibility including recruitment and study compliance remain important considerations for future work.
CONTEXT: Many cancer patients are referred to palliative care (PC) outpatient clinics but do not attend consultations, which increases the difficultly of integrating PC in a timely manner.
OBJECTIVES: To evaluate the frequency, causes and profile of missing first-time consultations in a PC outpatient clinic.
METHODS: Data from advanced cancer patients who were scheduled for first-time visits to the PC Outpatient Clinic from September 2018 to August 2019 were analyzed. Missed consultation (MC) was defined as a non-performed consultation with no prior notice of cancellation and missed opportunity of palliative care (MOPC) was defined as a non-performed consultation regardless of being notified in advance. The causes of the absence were identified by telephone using a standardized form. Logistic regression models were used to identify the profile of patients who MOPC.
RESULTS: 1,468 patients were scheduled for first-time visits to the PC Outpatient Clinic; MC = 21.7% (n=275) and MOPC = 32.5% (n=478). Of the total number of patients who MOPC, 86 (18%) were later seen in a median time (p25-p75) of 29.5 days (7.0 -66.5). The most common cause of MOPC was death before consultation (n=92, 29.8%). Referral to PC using a standardized protocol (OR: 0.787, p=0.044) and residence in distant cities (OR: 2.394, p<0.001) were independently associated with MOPC.
CONCLUSIONS: Approximately one third of patients eligible for PC miss the opportunity to be included earlier; only 18% of them are consulted later. Use of standardized referral protocols may help to reduce these absence rates.
This study aims at evaluating the symptom response, response duration, and toxicity of single dose palliative liver radiotherapy (RT) for symptomatic HCC patients. We reviewed unresectable HCC patients treated with palliative RT in our institution. Eligible patients were unsuitable or refractory to trans-arterial chemoembolization (TACE) and stereotactic body radiotherapy (SBRT), with an index symptom of pain or abdominal discomfort. The primary outcome was the percentage of patients with clinical improvement of index symptom at 1 month. Secondary outcomes were response duration, toxicities, alpha-feto protein (AFP) response, and radiological response. Fifty-two patients were included in the study. The index symptom was pain in 34 patients (65.4%), and abdominal discomfort (34.6%) in 18 patients. At 1 month, 51.9% of patients had improvement of symptoms. Median time to symptom progression was 89 days (range: 12-392 days). Treatment was well tolerated with only 2 patients (3.8%) developing grade 3 GI toxicities. AFP response, radiological response rate, and disease control rate at 3 months were 48.6%, 15.1%, and 54.5% respectively. Half of the patients had improvement of index symptoms after receiving palliative liver RT with median response duration of 3 months. The treatment was well tolerated with minimal toxicities.
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an unsuccessful resuscitation, including parental perspectives.
METHODS: Clinicians from different backgrounds participated in a standardized, videotaped, simulated neonatal resuscitation in the presence of parent actors. The infant remained pulseless; participants communicated with the parent actors before, during, and after discontinuing resuscitation. Twenty-one evaluators with varying expertise (including 6 bereaved parents) viewed the videos. They were asked to score clinician-parent communication and identify the top communicators. In open-ended questions, they were asked to describe 3 aspects that were well done and 3 that were not. Answers to open-ended questions were coded for easily reproducible behaviors. All the videos were then independently reviewed to evaluate whether these behaviors were present.
RESULTS: Thirty-one participants' videos were examined by 21 evaluators (651 evaluations). Parents and actors agreed with clinicians 81% of the time about what constituted optimal communication. Good communicators were more likely to introduce themselves, use the infant's name, acknowledge parental presence, prepare the parents (for the resuscitation, then death), stop resuscitation without asking parents, clearly mention death, provide or enable proximity (clinician-parent, infant-parent, clinician-infant, mother-father), sit down, decrease guilt, permit silence, and have knowledge about procedures after death. Consistently, clinicians who displayed such behaviors had evaluations >9 out of 10 and were all ranked top 10 communicators.
CONCLUSIONS: During a neonatal end-of-life scenario, many simple behaviors, identified by parents and providers, can optimize clinician-parent communication.