BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.
CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.
CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
BACKGROUND AND OBJECTIVE: Integration of specialist palliative care into routine oncologic care improves patients' quality of life and survival. NCCN cancer treatment guidelines are instrumental in standardizing cancer care; yet, it is unclear how palliative and hospice care are integrated in these guidelines. In this study, we examined the frequency of occurrence of "palliative care" and "hospice care" in NCCN guidelines and compared between solid tumor and hematologic malignancy guidelines.
MATERIALS AND METHODS: We reviewed all 53 updated NCCN Guidelines for Treatment of Cancer. We documented the frequency of occurrence of "palliative care" and "hospice care", the definitions for these terms if available, and the recommended timing for these services.
RESULTS: We identified a total of 37 solid tumor and 16 hematologic malignancy guidelines. Palliative care was mentioned in 30 (57%) guidelines (24 solid tumor, 6 hematologic). "Palliative care" was mentioned more frequently in solid tumor than hematologic guidelines (median 2 vs. 0, P=0.04). Among the guidelines that included palliative care in the treatment recommendation, 25 (83%) only referred to NCCN palliative care guideline. Specialist palliative care referral was specifically mentioned in 5/30 (17%) guidelines. Only 14/24 (58%) solid tumor guidelines and 2/6 (33%) hematologic guidelines recommended palliative care in the front line setting for advanced malignancy. Few guidelines (N=3/53, 6%) mentioned hospice care.
CONCLUSION: "Palliative care" was absent in almost half of NCCN cancer treatment guidelines and was rarely discussed in guidelines for hematologic malignancies. Our findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.
IMPLICATIONS FOR PRACTICE: Integration of specialist palliative care into routine oncologic care is associated with improved patient outcomes. NCCN Clinical Practice Guidelines in Oncology have an important role to standardize palliative care involvement for cancer patients. It is unclear how often palliative care referral is recommended in these guidelines. In this study involving 53 NCCN Guidelines for Treatment of Cancer, the researchers found that palliative care was not mentioned in over 40% of NCCN guidelines and was rarely discussed in guidelines for hematologic malignancies. These findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.
Advances in the treatment of cancer have improved both the quantity and quality of life for patients in recent years. Better supportive care, improved therapies to moderate side effects and symptom management, the understanding of molecular mechanisms, and the advent of targeted agents and immunotherapy have all improved the outcome for many cancer patients. Yet, the sad reality is that most patients will eventually succomb to their disease.
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CONTEXT: Palliative care referrals (PCR) improve symptom management, provide psychosocial and spiritual support, clarify goals of care and facilitate discharge planning. However, very late PCR can result in increased clinician distress and prevent patients and families from benefitting from the full spectrum of interdisciplinary care.
METHODS: Consecutive first-time inpatient PCR from September 1, 2013 to August 31, 2017 were identified to determine the frequency and predictors of referrals within 24 hours of death. We compared the clinical characteristics with a random sample of patients discharged alive or died more than 24 hours after first-time PCR as a control, stratified by year of consult in a 1:1 ratio.
RESULTS: Of 7,322 first-time PCR, 154 (2%) died within 24 hours of referral. These patients were older (p=0.003) and had higher scores for depression (p=0.0009), drowsiness (p=0.02) and shortness of breath (p=0.008) compared to a random sample of 153 patients discharged alive or died more than 24 hours after first-time PCR. Patients who received a PCR within 24 hours of death were more likely than the control group to have ECOG 4 (95% vs. 25%, p<0.0001), delirium (89% vs. 17%, p<0.0001), DNR code status (81% vs. 18%, p<0.0001), and hematologic malignancies (39% vs. 16%, p<0.0001). In the multivariate analysis, depression (OR 1.4, p=0.005), DNR code status (OR 9.1, p=0.003) and ECOG 4 (OR 9.8, p=0.003) were independently associated with first-time PCR within 24 hours of death.
CONCLUSION: While only a small proportion of first-time PCR occurred in the last 24 hours of life, the patients had a significant amount of distress, indicating a missed opportunity for timely palliative care intervention. These sentinel events call for specific guidelines to better support patients, families and clinicians during this difficult time. Further research is needed to understand how to minimize very late PCR.
Background: Patients with cancer-related pain use opioids for nociceptive pain, while gabapentinoids are common to treat neuropathic pain. The simultaneous use of opioids with gabapentinoids has been associated with an increased risk of opioid-related death.
Objectives: Determine the frequency of combined use of gabapentinoids among patients receiving opioids for cancer-related pain. We also examined if concomitant use of opioids and gabapentinoids together was associated with increased scores of fatigue and drowsiness on the Edmonton Symptom Assessment Scale (ESAS) compared to patients on opioids.
Design: Retrospective study of patients on opioids and opioids plus gabapentinoids at their third visit to the outpatient Supportive Care Center.
Results: We found that 48% (508/1059) of patients were on opioids. Of these patients, 51% (257/508) were on opioids only, and 49% (251/508) were on opioids plus gabapentinoids. The median (interquartile range [IQR]) morphine equivalent daily dose for patients on opioids was 75 (45, 138) mg, and opioids plus gabapentinoids was 68 (38, 150) mg (p = 0.94). The median (IQR) gabapentinoid equivalent daily dose was 900 (300, 1200) mg. The median (IQR) for ESAS-fatigue in patients on opioids was 5 (3, 7), and opioids plus gabapentinoids was 5 (3, 7) (p = 0.27). The median (IQR) for ESAS-drowsiness in patients on opioids was 3 (0, 5), and opioids plus gabapentinoids was 3 (0, 6) (p = 0.11).
Conclusion: Almost 50% of advanced cancer patients receiving opioids for pain were exposed to gabapentinoids. Maximal efforts should be made to minimize potential complications from the concomitant use of opioids with gabapentinoids.
Background: The role of neuroleptics for terminal agitated delirium is controversial. We assessed the effect of three neuroleptic strategies on refractory agitation in patients with cancer with terminal delirium.
Methods: In this single-centre, double-blind, parallel-group, randomised trial, patients with advanced cancer, aged at least 18 years, admitted to the palliative and supportive care unit at the University of Texas MD Anderson Cancer Center (Houston, TX, USA), with refractory agitation, despite low-dose haloperidol, were randomly assigned to receive intravenous haloperidol dose escalation at 2 mg every 4 h, neuroleptic rotation with chlorpromazine at 25 mg every 4 h, or combined haloperidol at 1 mg and chlorpromazine at 12·5 mg every 4 h, until death or discharge. Rescue doses identical to the scheduled doses were administered at inception, and then hourly as needed. Permuted block randomisation (block size six; 1:1:1) was done, stratified by baseline Richmond Agitation Sedation Scale (RASS) scores. Research staff, clinicians, patients, and caregivers were masked to group assignment. The primary outcome was change in RASS score from time 0 to 24 h. Comparisons among group were done by modified intention-to-treat analysis. This completed study is registered with ClinicalTrials.gov, NCT03021486.
Findings: Between July 5, 2017, and July 1, 2019, 998 patients were screened for eligibility, with 68 being enrolled and randomly assigned to treatment; 45 received the masked study interventions (escalation n=15, rotation n=16, combination n=14). RASS score decreased significantly within 30 min and remained low at 24 h in the escalation group (n=10, mean RASS score change between 0 h and 24 h -3·6 [95% CI -5·0 to -2·2]), rotation group (n=11, -3·3 [–4·4 to -2·2]), and combination group (n=10, -3·0 [–4·6 to -1·4]), with no difference among groups (p=0·71). The most common serious toxicity was hypotension (escalation n=6 [40%], rotation n=5 [31%], combination n=3 [21%]); there were no treatment-related deaths.
Interpretation: Our data provide preliminary evidence that the three strategies of neuroleptics might reduce agitation in patients with terminal agitation. These findings are in the context of the single-centre design, small sample size, and lack of a placebo-only group.
Funding: National Institute of Nursing Research.
The COVID-19 pandemic is expected to surpass the healthcare system’s capacity to provide intensive care to all patients who deteriorate as a result of the disease. This poses a unique challenge to healthcare teams of rationing care during pandemic when resources are scarce. Healthcare providers will need to acquire new skills in care decision making and effective symptom control for patients who do not receive life-saving measures. In this review, we describe some of the important palliative care considerations that need to be incorporated into COVID-19 pandemic planning. The main aspects to be considered include decision algorithms for rationing care, training on effective symptoms management, alternative delivery methods of palliative care services such as telemedicine and finally death and bereavement support for surviving family members who are likely to be isolated from their loved one at the moment of death.
Objective: Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation.
Method: The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL).
Results: Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%). Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively).
Significance of results: There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.
Context: Limited access to opioids for cancer patients has been reported as a potential unintended consequence of recent regulations restricting opioid use and prescribing practices. To our knowledge, there are a limited number of peer-reviewed studies that evaluate cancer patients’ perceived difficulties when filling their opioid prescription. To understand these difficulties, we surveyed patients receiving opioids in our outpatient Supportive Care Center (SCC).
Objectives: The primary objective of this study was to evaluate cancer patients’ perceptions of overall difficulties when filling their opioid prescription. Secondary objectives included determining associations between patient characteristics and difficulty, and comparing difficulty between filling opioid and non-opioid prescriptions.
Methods: Cancer patients receiving opioids that had been seen two times or more at our SCC were asked to complete a survey. The information collected included patient demographics, clinical characteristics, and patients’ experiences filling their opioid prescription.
Results: The patients’ median age was 60 years; 54% were female and 69% were white. Forty-four patients (32%) reported that they have experienced difficulty filling their opioid prescription. More than 25% of those 44 patients perceived difficulty from interactions with the pharmacy/pharmacist. Forty-six patients (33%) reported more difficulty filling their opioid prescriptions than filling their non-opioid prescriptions.
Conclusions: This study provides evidence that patients with cancer visiting our SCC perceived difficulties obtaining their opioid prescriptions. The results suggest that negative interactions with the pharmacy/pharmacist contributes to their perceived difficulty. Additional research is needed to further characterize the contributors of the difficulties cancer patients face in filling their opioid prescriptions.
BACKGROUND: The International Association for Hospice and Palliative Care (IAHPC) developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief.
AIM: The objective of this paper is to present the research behind the new definition.
METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In phase one, 38 PC experts evaluated the components of the World Health Organization (WHO) definition and suggested new/revised ones. In phase two, 412 IAHPC members in 88 countries expressed their level of agreement with the suggested components. In phase three, using results from phase two, the expert panel developed the definition.
RESULTS: The consensus-based definition is "Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers." The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to palliative care.
CONCLUSIONS: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering, and those who believe that PC describes the care of those with a very limited remaining life span.
Patients with cancer have an increased risk of developing severe forms of coronavirus disease 2019, and patients with advanced cancer who are followed at home represent a particularly frail population. Although with substantial differences, the challenges that cancer care professionals have to face during a pandemic are quite similar to those posed by natural disasters. We have already managed the oncological home care service in L’Aquila (middle Italy) after the 2009 earthquake. With this letter, we want to share the procedures and tools that we have started using at the home care service of the Tuscany Tumor Association during the coronavirus disease 2019 pandemic.
Objective: Meeting the preferences of patients is considered an important palliative care outcome. Prior studies reported that more than 80% of patients with terminally ill cancer prefer to die at home. The purpose of this study was to determine place-of-death preference among palliative care patients in the outpatient centre and the palliative care unit (PCU) of a comprehensive cancer centre.
Methods: A cross-sectional anonymous questionnaire was administered to patients with advanced cancer and caregivers (PCU and outpatient centre) between August 2012 and September 2014. PCU patients responded when there was no delirium and the primary caregiver responded when the patient was unable to respond. In the case of outpatients, dyads were assessed. The survey was repeated 1 month later.
Results: Overall, 65% preferred home death. There was less preference for home death among PCU patients (58%) than among outpatients (72%). Patient and caregiver agreement regarding preferred place of death for home was 86%. After 1 month, outpatients were significantly more likely than PCU patients to have the same preferred place of death as they had 1 month earlier (96% vs 83%; p=0.003).
Conclusions: Although home was the preferred place of death in our group of patients with advanced cancer and their caregivers, a substantial minority preferred hospital death or had no preference. We speculate that PCU patients’ higher preference for hospital death is likely related to more severe distress because they had already tried home care. Personalised assessment of place of death preference for both patient and caregiver is needed.
Palliative Care (PC) physicians are vulnerable for burnout given the nature of practice. The burnout frequency may be variable and reported between 24 to 38 % across different countries.
OBJECTIVE: The main objective of our study was to determine the frequency of burnout among PC physicians participating in PC Continuing Medical Education (CME) course.
METHODS: A survey including the Maslach Burnout Inventory (MBI) - General along with 41 custom questions were administered to determine the frequency of burnout among physicians attending the 2018 Hospice and Palliative Medicine (HPM) Board Review Course.
RESULTS: Of 110 physicians, 91 (83%) completed the survey. The median age was 48 years with 65% being females, 81% married, 46% in community practice, 38% in practice for 6–15 years. PC was practiced =50% of the time by 62%, and 76% were doing clinical work. About 73 (80%) reported that PC is appreciated at their work, 58 (64%) reported insurance to be a burden, and 58 (64%) reported that the electronic medical record was a burden. About 82 (90%) felt optimistic about continuing PC in future. Maslach Burnout Inventory results suggest that 35 (38%) participants reported at least one symptom of burnout. Only being single/separated showed trend toward significance with burnout (P = 0.056).
CONCLUSION: Burnout among PC physicians who attended a board review course was 38%. Being single/separated showed trend towards association with burnout. Physicians who choose to attend CME may have unique motivating characteristics allowing them to better cope with stress and avoid burnout.
CONTEXT: Few studies have examined how clinicians assess decision-making capacity for research in the last weeks of life.
OBJECTIVE: We examined the decision-making capacity for participation in a research study and its association with clinician impression and delirium among cancer patients with days to weeks of life expectancy.
METHODS: Patients admitted to our Palliative and Supportive Care Unit (PSCU) were approached for a prospective observational study. We assessed for their decision-making capacity based on clinical impression of physician and nurse, Memorial Delirium Assessment Scale (MDAS) and the MacArthur Competency Assessment Tool for Clinical Research (MacCAT-CR).
RESULTS: Among the 206 patients, 131 patients (64%) did not require MacCAT-CR assessment because they were overtly delirious or unresponsive; 37 (18%) patients were alert but did not complete the MacCAT-CR assessment for other reasons and 38 patients (18%) completed the MacCAT-CR assessment. Among these 38 patients, 5 (13%) were incapable and had normal albeit significantly higher MDAS scores compared to those who were capable (1.8 vs. 4.2, P=0.002). Compared against MacCAT-CR and MDAS, the overall agreement with capacity assessment with a clinician was 88% (95% CI 82-93%) for physicians and 90% (95% CI 82-94%) for nurses. The area-under the receiver-operating characteristics curve was 0.93 (95% CI 0.88-0.96) for physicians and 0.94 (95% CI 0.89-0.97) for nurses, suggesting high discrimination.
CONCLUSION: A majority of patients in the PSCU lacked decision-making capacity for participation in clinical research. Clinician impression had high accuracy. Few patients with normal MDAS were found to be incapable with MacCAT-CR assessment.
BACKGROUND, AIM, AND HYPOTHESIS: This randomized controlled trial aimed to compare the impact of a physician's attire on the perceptions of patients with cancer of compassion, professionalism, and physician preference. Our hypothesis was that patients would perceive the physician with formal attire as more compassionate than the physician wearing casual attire.
MATERIALS AND METHODS: One hundred five adult follow-up patients with advanced cancer were randomized to watch two standardized, 3-minute video vignettes with the same script, depicting a routine physician-patient clinic encounter. Videos included a physician in formal attire with tie and buttoned-up white coat and casual attire without a tie or white coat. Actors, patients, and investigators were all blinded to the purpose and videos watched, respectively. After each video, patients completed validated questionnaires rating their perception of physician compassion, professionalism, and their overall preference for the physician.
RESULTS: There were no significant differences between formal and casual attire for compassion (median [interquartile range], 25 [10-31] vs. 20 [8-27]; p = .31) and professionalism (17 [13-21] vs. 18 [14-22]; p = .42). Thirty percent of patients preferred formal attire, 31% preferred casual attire, and 38% had no preference. Subgroup analysis did not show statistically significant differences among different cohorts of age, sex, marital status, and education level.
CONCLUSION: Doctors' attire did not affect the perceptions of patients with cancer of physician's level of compassion and professionalism, nor did it influence the patients' preference for their doctor or their trust and confidence in the doctor's ability to provide care. There is a need for more studies in this area of communications skills.
Clinical trial identification number. NCT03168763
IMPLICATIONS FOR PRACTICE: The significance of physician attire as a means of nonverbal communication has not been well characterized. It is an important element to consider, as patient preferences vary geographically, are influenced by cultural beliefs, and may vary based on particular care settings. Previous studies consisted of nonblinded surveys and found increasing confidence in physicians wearing a professional white coat. Unfortunately, there are no randomized controlled trials, to the authors' knowledge, to confirm the survey findings. In this randomized, blinded clinical trial the researchers found that physician's attire did not affect patients' perception of the physician's level of compassion and professionalism. Attire also did not influence the patients' preferences for their doctor or their trust and confidence in the doctor's ability to provide care.
BACKGROUND: This study examined the changes in outpatient palliative care services at US cancer centers over the past decade.
METHODS: Between April and August 2018, all National Cancer Institute (NCI)-designated cancer centers and a random sample of 1252 non-NCI-designated cancer centers were surveyed. Two surveys used previously in a 2009 national study were sent to each institution: a 22-question cancer center executive survey regarding palliative care infrastructure and attitudes toward palliative care and an 82-question palliative care program leader survey regarding detailed palliative care structures and processes. Survey findings from 2018 were compared with 2009 data from 101 cancer center executives and 96 palliative care program leaders.
RESULTS: The overall response rate was 69% (140 of 203) for the cancer center executive survey and 75% (123 of 164) for the palliative care program leader survey. Among NCI-designated cancer centers, a significant increase in outpatient palliative care clinics was observed between 2009 and 2018 (59% vs 95%; odds ratio, 12.3; 95% confidence interval, 3.2-48.2; P < .001) with no significant changes in inpatient consultation teams (92% vs 90%; P = .71), palliative care units (PCUs; 26% vs 40%; P = .17), or institution-operated hospices (31% vs 18%; P = .14). Among non-NCI-designated cancer centers, there was no significant increase in outpatient palliative care clinics (22% vs 40%; P = .07), inpatient consultation teams (56% vs 68%; P = .27), PCUs (20% vs 18%; P = .76), or institution-operated hospices (42% vs 23%; P = .05). The median interval from outpatient palliative care referral to death increased significantly, particularly for NCI-designated cancer centers (90 vs 180 days; P = 0.01).
CONCLUSIONS: Despite significant growth in outpatient palliative care clinics, there remain opportunities for improvement in the structures and processes of palliative care programs.
Palliative care has evolved over the past five decades as an interprofessional specialty to improve quality of life and quality of care for patients with cancer and their families. Existing evidence supports that timely involvement of specialist palliative care teams can enhance the care delivered by oncology teams. This review provides a state-of-the-science synopsis of the literature that supports each of the five clinical models of specialist palliative care delivery, including outpatient clinics, inpatient consultation teams, acute palliative care units, community-based palliative care, and hospice care. The roles of embedded clinics, nurse-led models, telehealth interventions, and primary palliative care also will be discussed. Outpatient clinics represent the key point of entry for timely access to palliative care. In this setting, patient care can be enhanced longitudinally through impeccable symptom management, monitoring, education, and advance care planning. Inpatient consultation teams provide expert symptom management and facilitate discharge planning for acutely symptomatic hospitalized patients. Patients with the highest level of distress and complexity may benefit from an admission to acute palliative care units. In contrast, community-based palliative care and hospice care are more appropriate for patients with a poor performance status and low to moderate symptom burden. Each of these five models of specialist palliative care serve a different patient population along the disease continuum and complement one another to provide comprehensive supportive care. Additional research is needed to define the standards for palliative care interventions and to refine the models to further improve access to quality palliative care.
Palliative care is seeing cancer patients earlier in the disease trajectory with a multitude of chronic issues. Chronic non-malignant pain (CNMP) in cancer patients is under-studied. In this prospective study, we examined the prevalence and management of CNMP in cancer patients seen at our supportive care clinic for consultation. We systematically characterized each pain type with the Brief Pain Inventory (BPI) and documented current treatments. The attending physician made the pain diagnoses according to the International Association for the Study of Pain (IASP) task force classification. Among 200 patients (mean age 60 years, 69% metastatic disease, 1-year survival of 77%), the median number of pain diagnosis was 2 (IQR 1-2); 67 (34%, 95% CI 28-41%) had a diagnosis of CNMP; 133 (67%) had cancer-related pain; and 52 (26%) had treatment-related pain. In total, 12/31 (39%) patients with only CNMP and 21/36 (58%) patients with CNMP and other pain diagnoses were on opioids. There was a total of 94 CNMP diagnoses among 67 patients, including 37 (39%) osteoarthritis and 20 (21%) lower back pain; 30 (32%) were treated with opioids. In summary, CNMP was common in the timely palliative care setting and many patients were on opioids. Our findings highlight the need to develop clinical guidelines for CNMP in cancer patients to standardize its management.
Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
Background: Few studies have examined meaning in life, a novel existential outcome, in patients with advanced cancer across countries.
Objectives: We examined differences in meaning in life across 5 countries and identified factors associated with meaning in life.
Methods: This is a pre-planned secondary analysis of a prospective longitudinal multicenter observational study of patients with advanced cancer. Meaning in life was assessed using a validated scale which examined four domains of meaning: values, purpose, goals, and reflection. The total score ranged from 8 to 32, with a higher score indicating greater meaning in life.
Results: Among 728 patients, the median meaning in life score was 25/32 (interquartile range 23, 28). There was no significant difference in the total meaning in life score among 5 countries (P = 0.11), though there were differences in domain sub-scores. In the univariate analysis, patients with higher intensity of physical symptoms by ESAS score (pain, fatigue, drowsiness, dyspnea, insomnia), depression, anxiety, spiritual pain, and financial distress had significantly lower meaning in life. However, patients with higher levels of education, who were married, and who had higher optimism had significantly higher meaning in life. In the multivariate analysis, higher total meaning in life scores were significantly associated with greater optimism (multivariate estimate = 0.33, p < 0.001), lower depression (- 0.26, < 0.001), spiritual pain (- 0.19, < 0.001), and financial distress (- 0.16, < 0.001).
Conclusion: Country of origin was not a determinant of meaning in life. However, meaning in life was significantly associated with optimism, depression, spiritual pain, and financial distress, underscoring the multidimensional nature of this construct and potential opportunities for improvement in addressing meaning in life of patients with advanced cancer.