BACKGROUND: Pain and opioid management are core ambulatory palliative care skills. Existing literature on how to manage opioid misuse/use disorder excludes patients found in palliative care settings, such as individuals with serious illness or those at the end of life.
OBJECTIVES: We conducted an exploratory study to: (1) Identify the challenges palliative care clinicians face when prescribing opioids in ambulatory settings and (2) explore factors that affect opioid decision-making.
METHODS: We recruited palliative care clinicians who prescribe opioids in ambulatory settings, which included open-ended questions and was conducted online. Results were analyzed qualitatively using a content analysis-based approach.
RESULTS: Eighty-three palliative care clinicians (mostly MDs/DOs) participated. Challenges faced when prescribing opioids included clinician differences in approach to care (eg, transitioning from another clinician with more permissive opioid prescribing), medication access (eg, inadequate pharmacy supply), resource constraints (eg, access to mental health and addiction expertise), managing problems outside the typical palliative care scope (eg addiction). Participants also discussed factors that influenced their opioid prescribing decisions, such as opioid-related harms and risks that they need to weigh; they also spoke about the necessity of considering other factors like the patient's environment, disease, treatment, and prognosis.
CONCLUSION: This study highlights the challenge of opioid management in patients with serious illness, particularly when misuse or substance use disorder is present, and suggests areas for future research focus. Our next step will be to establish consensus on approaches to opioid prescribing decision-making and policy in seriously ill patients presenting to ambulatory palliative care.
BACKGROUND: Advance care planning (ACP) is well recognised as an important component of palliative care. However, there is still a need to explore ways in which it can become a part of routine practice, ensuring a timely and person-centred discussion.
OBJECTIVES: To explore patients newly diagnosed with advanced lung cancer and their family members' experiences of engaging in a person-centred and structured ACP discussion facilitated by palliative care nurses in an outpatient oncology clinic at the University Hospital of Iceland.
METHODS: An exploratory qualitative design employing semi-structured interviews and thematic analysis. The intervention included a structured ACP discussion, aided by a booklet.
RESULTS: Key themes emerged describing families' and patients' experiences and highlighted that the timing and approach of the ACP discussion was appropriate and helpful, even though the discussion was sensitive and difficult. Using a routine approach with a flexible structure normalised the discussion and made it easier for the patients to take the lead in the discussion.
CONCLUSIONS: ACP discussion can be part of an integrated palliative care and oncology service if implemented in a systematic way.
CONTEXT: Palliative care encompasses an interdisciplinary team, including mental health care professionals, to address psychological distress of cancer patients.
OBJECTIVES: To present the implementation of an outreach counseling program via videoconferencing or telephone to patients receiving care in an outpatient palliative care clinic and to compare patients using this service to those who only received psychological counseling in our outpatient clinic.
METHODS: We conducted a retrospective chart review of cancer patients seen for psychology counseling services in an outpatient supportive care center between June 2015 and March 2017.
RESULTS: We reviewed 2072 unique patients (52% of the total patients seen at the outpatient Supportive Care Center), who had 4567 total counseling encounters across outreach and outpatient settings. A total of 452 (22%) patients participated in a combination of outpatient and outreach counseling services. Patients who participated in outreach services had significantly more encounters (311 [69%] had two to five sessions) compared with those who had outpatient services only (1137 [70%] had one session only) (P < .001). Outreach patients also had shorter times between the initial and follow-up encounters (median 14 days) compared with those who had outpatient services only (median 30 days) (P < .0001).
CONCLUSIONS: Outreach telehealth counseling services was found to enhance palliative care patient access to psychological counseling. These services represent an additional modality for providing continuous psychological care.
The Canadian province of Quebec enacted in 2014 a legislation that permitted medical assistance in dying (MAID) under specific conditions and the rest of Canada followed suit in June 2016. In this article, which is the second in a set of case series of requests for MAID in Canadian psychiatry, we present the cases of two patients who made a request for MAID to their treating psychiatrist in an outpatient clinic. While one is advanced in age and suffering from intense physical and psychic pain with little if any psychiatric comorbidity, the other is a young and medically healthy woman who nonetheless suffers from extensive psychiatric comorbidity. This article discusses both cases in light of recent scientific literature and case law that is slowly emerging in Canada, focusing on the concepts of the end of life and its legal definition as well as psychic suffering and its management in those wishing to receive physician-assisted dying. In our conclusion, we stress the need to clarify the definition of treatment resistance, the necessity to determine each physician's role when many are involved, as well as the importance of treating psychic pain holistically, which can sometimes require going beyond standard psychiatric care.
Objectives: Recent evidences show that early integration of palliative care (PC) with oncology has a positive impact on patients' quality of life, quality of care and costs. However, there is no consensus on outpatient referral criteria. Based on real world data, the aim of this study was to identify timing and factors associated to PC referral in patients with thoracic malignancies, and to describe their clinical care pathway.
Material and Methods: This observational retrospective study included consecutive patients with thoracic cancer, seen for the first time at the Thoracic Medical Oncology outpatient Clinic (TMOC) of our institution, between Jan.01-Dec.31 2014. Patients were followed-up till death or Dec.31 2015. Clinical and demographic data were collected from the electronic patient records. Cox regression models were used to evaluate the association between time to Palliative care Outpatient Clinic (POC) referral and performance status (PS), disease stage and symptoms at inclusion.
Results: 229 patients were eligible. 98 of them (43%; 95%IC 36%–49%) were referred to the POC within a median of 30 days (IQR 4–188). 80/98 patients received simultaneous anticancer therapy and PC. Univariable analysis showed that the hazard ratio (HR) of being referred to POC was significantly higher for patients with worse PS (HR = 4.5), more advanced disease stage (HR = 3.1), pain (HR = 4.9), dyspnea (HR = 2.5) and cough (HR = 2.2). The multivariable model confirmed independent prognostic value for PS, disease stage and pain. On Dec.31, 2015, 25/98 patients were still alive, 8 were lost at follow up and 65 had died. Among the latter, 61% died with hospice or home care, and, in the last 30 days of life, 16% received chemotherapy and 29% were admitted to hospital.
Conclusions: Our results suggest considering symptom burden, PS and disease stage as screening criteria for referral to PC in patients with thoracic malignancies.
Introduction: Patients with serious illness often have pain, uncontrolled symptoms, and poor quality of life. Evidence continues to evolve regarding the role of cannabis to treat chronic pain, nausea, and anorexia. Little is known about how patients with serious illness perceive its benefits and harms. Given that an increasing number of clinicians across the United States are treating patients with medical cannabis, it is important for providers to understand patient beliefs about this modality. We assessed patient perceptions of benefits and harms of cannabis who obtained a medical cannabis card within an ambulatory palliative care (APC) practice.
Methods: We recruited patients with a medical cannabis card, allowing for legal possession of cannabis oil, from an APC practice in Georgia. All participants reported using cannabis products. Patients completed an online survey that included questions about their cannabis use, concurrent opiate or controlled medication use, and perceptions of benefits and harms of cannabis.
Results: All 101 patients invited to participate completed the survey. A majority had cancer (76%) and were married (61%), disabled or retired (75%), older than 50 years of age (64%), and men (56%). Most patients ingested (61%) or vaporized (49%) cannabis products. A majority of respondents perceived cannabis to be important for their pain (96%) management. They reported that side effects were minimally bothersome, and drowsiness was the most commonly reported bothersome harm (28%). A minority of patients reported cannabis withdrawal symptoms (19%) and concerns for dependency (14%). The majority of patients were using concurrent prescription opioids (65%). Furthermore, a majority of cancer patients reported cannabis as being important for cancer cure (59%).
Conclusion: Patients living with serious illnesses who use cannabis in the context of a multidisciplinary APC practice use cannabis for curative intent and for pain and symptom control. Patients reported improved pain, other symptoms, and a sense of well-being with few reported harms.
This quality improvement project utilized a risk stratification process and an advance care planning (ACP) tool to identify patients at high risk of death and prompt ACP discussions and documentation of health care preferences in the electronic health record. Inherent uncertainty in heart failure (HF) prognostication and provider time constraints impede initiation of timely ACP discussions. In an effort to mitigate these obstacles, the Seattle Heart Failure Model was utilized to calculate mortality risk for 195 patients in an ambulatory HF clinic. Next, a HF-specific ACP tool, developed for this project, was used to prompt and guide ACP discussions with patients determined to have a prognosis of life expectancy of 3 years or less. The project yielded a 35% completion of ACP tools over 3 months, with 100% of these entered into the electronic health record. Postimplementation surveys suggest clinic staff believe a comprehensive and systematic approach to ACP services facilitates timely ACP discussions and decision making in the outpatient setting.
Palliative care services offered in the United States have grown substantially since the year 2000. These types of services have been shown to improve a patient's quality of life when presented with a serious or life-threatening disease or illness. An important characteristic of a quality palliative care service is the presence of an interdisciplinary team to utilize different areas of expertise to address multiple aspects of patient care. An important member of this team is the pharmacist. The services presented in this interprofessional education and practice guide describe pharmacist-delivered palliative care services offered in an institutional ambulatory palliative care setting from 2012 to 2018.
Introduction: Palliative care is recommended for patients with life-limiting illnesses; however, there are few standardized protocols for outpatient palliative care visits. To address the paucity of data, this article aims to: (1) describe the elements of outpatient palliative care that are generalizable across clinical sites; (2) achieve consensus about standardized instruments used to assess domains within outpatient palliative care; and (3) develop a protocol and intervention checklist for palliative care clinicians to document outpatient visit elements that might not normally be recorded in the electronic heath record.
Methods: As part of a randomized control trial of nurse-led telephonic case management versus specialty, outpatient palliative care in older adults with serious life-limiting illnesses in the Emergency Department, we assessed the structural characteristics of outpatient care clinics across nine participating health care systems. In addition, direct observation of outpatient palliative care visits, consultation from content experts, and survey data were used to develop an outpatient palliative care protocol and intervention checklist.
Implementation: The protocol and checklist are being used to document the contents of each outpatient palliative care visit conducted as a part of the Emergency Medicine Palliative Care Access (EMPallA) trial. Variation across palliative care team staffing, clinic session capacity, and physical clinic model presents a challenge to standardizing the delivery of outpatient palliative care.
The palliative care patient is definitely a unique type of patient. Due to the complexity of the symptoms requires a holistic therapeutic approach. Modern methods of treatment in palliative and hospice care underline an important role of physio, kinesiotherapy and pharmacological treatment coexistence. The rehabilitation reduces clinical symptoms, accompanying the basic disease and increases the quality of life of palliative patients and their families. It becomes an inseparable element of treatment, both in outpatient care as well as in stationary care and home care. Due to the high dynamics onset of cancer in the group of geriatric patients there is a need for a broader analysis of the topic. The goal of palliative care is to achieve the best possible quality of life for patients and their families.
Background: There is a growing preference for the use of marijuana for medical purposes, despite limited evidence regarding its benefits and potential safety risks. Legalization status may play a role in the attitudes and preferences toward medical marijuana (MM).
Objectives: The attitudes and beliefs of cancer patients in a legalized (Arizona) versus nonlegalized state (Texas) regarding medical and recreational legalization and medical usefulness of marijuana were compared.
Settings/Subjects: Two hundred adult cancer patients were enrolled from outpatient Palliative Care centers at Banner MD Anderson Cancer Center in Gilbert, AZ (n = 100) and The University of Texas MD Anderson Cancer Center in Houston, TX (n = 100).
Design and Measurements: Adult cancer patients seen by the Palliative Care teams in the outpatient centers were evaluated. Various physical and psychosocial assessments were conducted, including a survey of attitudes and beliefs toward marijuana.
Results: The majority of individuals support legalization of marijuana for medical use (Arizona 92% [85–97%] vs. Texas 90% [82–95%]; p = 0.81) and belief in its medical usefulness (Arizona 97% [92–99%] vs. Texas 93% [86–97%]; p = 0.33) in both states. Overall, 181 (91%) patients supported legalization for medical purposes whereas 80 (40%) supported it for recreational purposes (p < 0.0001). Patients preferred marijuana over current standard treatments for anxiety (60% [51–68%]; p = 0.003). Patients found to favor legalizing MM were younger (p = 0.027), had worse fatigue (p = 0.015), appetite (p = 0.004), anxiety (p = 0.017), and were Cut Down, Annoyed, Guilty, and Eye Opener-Adapted to Include Drugs (CAGE-AID) positive for alcohol/drugs (p < 0.0001).
Conclusion: Cancer patients from both legalized and nonlegalized states supported legalization of marijuana for medical purposes and believed in its medical use. The support for legalization for medical use was significantly higher than for recreational use in both states.
BACKGROUND: Although the effectiveness of early palliative care for patients with advanced cancer has been demonstrated in several trials, there has been no detailed published description of an early palliative care intervention.
METHOD: In this paper, we delineate the iterative conception and systematic evaluation of a complex intervention called team-based outpatient early palliative care (TO-EPC), and describe the components of the intervention. The intervention was developed based on palliative care theory, review of previous palliative care interventions and practice guidelines. We conducted feasibility testing and piloting of TO-EPC in a phase 2 trial, followed by evaluation in a large cluster randomised trial and qualitative research with patients and caregivers. The qualitative research informed the iterative refinement of the intervention.
RESULTS: Four principles and four domains of care constitute a conceptual framework for TO-EPC. The main domains of care are: coping and support, symptom control, decision-making and future planning. The main principles are that care is flexible, attentive, patient-led and family-centred. The most prominent domain for the initial consultation is coping and support; follow-up visits focus on symptom control, decision-making to maximise quality of life and future planning according to patient readiness. Key tasks are described in relation to each domain.
CONCLUSION: The description of our intervention may assist palliative care teams seeking to implement it, researchers wishing to replicate or build on it and oncologists hoping to adapt it for their patients.
CONTEXT: Understanding the magnitude and risk-factors for symptom burden of cancer patients at the end-of-life is critical to guiding effective patient- and system-level interventions.
OBJECTIVES: We aimed to estimate the prevalence of severe patient-reported symptoms among cancer outpatients during the six months before death and to identify patient groups at a higher risk for reporting severe symptoms.
METHODS: This was a retrospective cohort study of cancer decedents at regional cancer centers from 2010-2016. Patient-reported Edmonton Symptom Assessment System (ESAS) scores from the last six months-of-life were linked to administrative databases. The proportion of patients reporting severe symptom scores (>7) for anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and overall wellbeing during the six months before death was described. Multivariable modified Poisson regression analyses were used to identify risk-factors for reporting severe symptom scores.
RESULTS: 22,650 of 39,084 cancer decedents had =1 symptom record in the last six months of life, resulting in 92,757 ESAS assessments. Severe scores were highest for tiredness (56%), lack of appetite (46%), and impaired wellbeing (45%). The proportion of patients reporting severe symptom scores was stable before progressively increasing at 3 months prior to death. Elderly, women, patients with high comorbidity, immigrants, living in urban areas or with high material deprivation were at increased risk of reporting severe scores.
CONCLUSIONS: Despite an integrated symptom screening program, rates of severe patient-reported symptom scores prior to death were high for cancer outpatients. Patient subgroups at increased risk of severe symptom burden may benefit from targeted interventions. Ongoing review of routinely collected symptom data may be used to assess the supportive care needs and guide targeted interventions at the health-system level.
BACKGROUND: The concurrent use of opioids with benzodiazepines (BZD) or nonbenzodiazepine sedatives (S) recently was found to be associated with an increased risk of overdose death compared with the use of opioids alone. In the current study, the authors examined the frequency and trend of concurrent opioid/BZD-S use and its associated risk factors among patients with cancer.
METHODS: Data regarding the frequency and trend of concurrent opioid/BZD-S use were extracted for 1500 randomly selected patients referred to the outpatient palliative care clinic at The University of Texas MD Anderson Cancer Center between the calendar years of 2011 and 2016. To explore associated risk factors, the authors compared the demographic and clinical predictors of 418 patients each in the concurrent opioid/BZD-S group and opioids-only group.
RESULTS: In 2011, at the time of referral to the palliative care clinic, 96 of 221 patients with cancer (43%) were prescribed concurrent opioids/BZD-S. This rate progressively declined to 67 of 217 patients (31%) by 2016 (P = .0008). Patients in the concurrent opioid/BZD-S group had a higher percentage of females (233 individuals; 55% [P = .007]) and whites (323 individuals; 77% [P = .002]), and patients reported higher scores regarding depression (P = .0001), anxiety (P = .0001), drowsiness (P = .048), and worst feeling of well-being (P = .001). The morphine equivalent daily dose was significantly higher in concurrent opioid/BZD-S group (median of 67.5 mg/day [interquartile range (IQR), 30-135 mg/day] vs 60 mg/day [IQR, 30-105 mg/day]; P = .034). Multivariate analysis demonstrated that anxiety (P = .0001), white race (P = .0092), and poor Eastern Cooperative Oncology Group performance status (P = .0017) were significantly associated with concurrent use.
CONCLUSIONS: The concurrent use of opioids with BZD-S has declined but continues to be frequent among patients with cancer. Anxiety, white race, and poor Eastern Cooperative Oncology Group performance status were associated with its use. More research is needed to explore which medications can replace these agents.
PURPOSE: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the outpatient and home settings. As integrated PPC/pediatric oncology becomes the standard of care, novel pediatric palliative oncology (PPO) outpatient models are emerging. The optimal PPO model is unknown and likely varies on the basis of institutional culture, resources, space, and personnel.
METHODS: We review five institutions' unique outpatient PPO clinical models with their respective benefits and challenges. This review offers pragmatic guidance regarding PPO clinic development, implementation, and resource allocation.
RESULTS: Specific examples include a floating clinic model, embedded disease-specific PPC experts, embedded consultative or trigger-based supportive care clinics, and telehealth clinics.
CONCLUSION: Organizations that have overcome personnel, funding, and logistical challenges can serve as role models for centers developing PPO clinic models. In the absence of a one-size-fits-all model, pediatric oncology and PPC groups can select, tailor, and implement the model that best suits their respective personnel, needs, and capacities. Emerging PPO clinics must balance the challenges and opportunities unique to their organization, with the goal of providing high-quality PPC for children with cancer and their families.
Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty.
Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice.
Design/Measurements: Utilizing chart abstractions, we characterize the clinic population served, clinical service utilization, visit activities, and symptom burden as assessed using the Integrated Palliative Care Outcome Scale-Renal (IPOS-R), and patient satisfaction.
Results: Among the 55 patients served, mean patient age was 72.0 years (standard deviation [SD] = 16.7), 95% had chronic kidney disease stage IV or V, and 46% had a Charlson Comorbidity Index >8. The mean IPOS-R score at initial visit was 16 (range = 0–60; SD = 9.1), with a mean of 7.5 (SD = 3.7) individual physical symptoms (range = 0–15) per patient. Eighty-seven percent of initial visits included an advance care planning conversation, 55.4% included a medication change for symptoms, and 35.5% included a dialysis decision-making conversation. Overall, 96% of patients who returned satisfaction surveys were satisfied with the care they received and viewed the KPC program positively.
Conclusions: A model of care that integrates palliative care with nephrology care in the ambulatory setting serves high-risk patients with serious kidney disease. This KPC program can potentially meet documented gaps in care while achieving patient satisfaction. Early findings from this program evaluation indicate opportunities for enhanced patient-centered palliative nephrology care.
Palliative care providers must seek to improve quality of life despite their patients' life-threating diseases, based on the concept of total pain, which includes physical, psychological and spiritual pain. Understanding the relationship between spiritual coping and psychological symptoms (especially depressive symptoms) could help healthcare teams better address patients' needs. Across-sectional survey with aconvenient sample of ambulatory palliative care patients investigated their psychological pain through the Hospital Anxiety and Depressive (HAD) scale and their use of spirituality using the Brief Religious/spiritual coping (BriefRCOPE) scale. Alinear regression model, using the HADS-depression as outcome variable and the BriefRCOPE as the independent variable, adjusting for confounding variables, investigated the possible association between these variables. Due to methodological limitations, just 40 out 130 potential participants were assessed, with 40percent showing depressive symptoms. In regression model, depressive and anxiety symptoms were significantly associated with each other (p = 0.037 and 0.015, respectively) and negative religious/spiritual coping was associated with depressive symptoms (p = 0.033). This study found asignificant relationship between psychological pain and negative spiritual coping mechanisms. Palliative care professionals should be trained to address patients' total pain and spiritual needs, supporting their ability to cope with their suffering.
OBJECTIVE: To determine factors influence place of death (POD) for end-stage cancer patients and investigate how the healthcare utilization mediates on the effect of socioeconomic status (SES) on POD.
DESIGN: A population-based, retrospective study from July 2015 to June 2017.
SETTING: Yichang, China.
PARTICIPANTS: 894 end-stage cancer patients.
MAIN OUTCOME MEASURE: POD.
RESULTS: Patients of hospital death experience more inpatient hospitalization services (IHS) and emergency department visits. Patients enrolled in the New Rural Cooperative Medical Scheme (OR = 7.60, P < 0.001) and Urban Employee Basic Medical Insurance (OR = 28.0, P < 0.001) have higher rates of hospital death than those in the Urban Resident-based Basic Medical Insurance. Living with spouse (OR = 1.72, P = 0.019) and receiving higher education (OR = 1.92, P = 0.004), increase the likelihood of hospital death by 72% and 92%, respectively. The probability of hospital death will increase by 14% and decrease by 4% per IHS and outpatient services occur, respectively. Outpatient services (Z = -2.28, P < 0.001), and IHS (Z = 2.17, P < 0.001) mediate 1.81% and 1.89%, respectively, of the effect of health insurance on POD. The overall effect of the mediators is non-statistically significant (Z = 0.09, P = 0.825).
CONCLUSION: POD is mainly driven by SES. The relationship between health insurance and POD is partly mediated by outpatient services and IHS, respectively. The results corroborated that hospital and home services should be coherently bridged. Furthermore, benefit packages for end-stage cancer patients could be redesigned.
Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
PURPOSE: Person-Centered Oncologic Care and Choices (P-COCC) combines an advance care planning (ACP) value-focused patient interview with a care goal video decision aid. Our randomized study showed that P-COCC was acceptable but increased participant distress, compared with video-alone and usual care study arms. This mixed methods approach explores the ACP values in the P-COCC arm and their relationship to the distress phenomenon.
METHODS: Qualitative thematic analysis of the 46 audio-recorded P-COCC interview transcripts with advanced gastrointestinal cancer patients was performed by multiple reviewers. Quantitative (Likert scale) changes in ACP values were compared across study arms. ACP themes and value change were analyzed in participants with increased distress.
RESULTS: Transcript analysis resulted in thematic saturation and identified eight distinct themes on ACP values relating to end-of-life wishes, communication needs, and psychosocial supports. Of 98 participants (33 P-COCC, 43 videos, 22 usual care) who completed the change in value measure, there was no difference detected with P-COCC compared with either video (p = 0.052) or usual care (p = 0.105) arms alone, but P-COCC led to a frequency distribution of more change in personal values compared with the other study arms combined (p = 0.043). Among the subset of P-COCC participants with increased distress, there was no statistical relationship with change in values.
CONCLUSIONS: The ACP paradigm P-COCC both informs and supports patients in individualized, value-based decision-making. Distress is not associated with changes in ACP values and may be a necessary, at least transient, byproduct of discussing sensitive but pertinent topics about end-of-life medical care.