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: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care.
OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale.
METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool.
RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed.
CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.
OBJECTIVES: In non-gynecologic cancers, clinical trial participation has been associated with aggressive care at the end of life. The objective of this investigation was to examine how trial participation affects end of life outcomes in patients with ovarian cancer.
METHODS: In a retrospective review of women diagnosed with ovarian cancer at our institution between January 2010 and December 2015, we collected variables identified by the National Quality Forum as measures of aggressive end of life care including chemotherapy in the last 14 days of life, intensive care unit (ICU) admission in the last 30 days of life, or death in the acute care setting. Trials investigating medications but not surgical interventions were included. The primary outcome of this study was the association between trial participation and the National Quality Forum measures of aggressive end of life care in ovarian cancer decedents. Data were analyzed with univariable and multivariable parametric and non-parametric testing, and time to event outcomes were analyzed using the Kaplan-Meier method and Cox's proportional hazard models.
RESULTS: Among 391 women treated for ovarian cancer, 62 patients (16%) participated in a clinical trial. Patients enrolled in clinical trials were more likely to have chemotherapy administered within 14 days of death; however, no association was found with other metrics of aggressive care at the end of life including the initiation of a new chemotherapy regimen in the last 30 days of life, ICU admissions, and death in an acute care setting. Among patients with recurrent ovarian cancer, median overall survival for trial participants was 57 months compared with only 31 months in non-trial participants (p<0.001).
CONCLUSIONS: In patients with ovarian cancer, clinical trial enrollment is associated with chemotherapy administration within 14 days of death, but not other measures of aggressive care at the end of life. Given the importance of clinical trial participation in improving care for women with ovarian cancer, this study suggests that concerns regarding aggressive care prior to death should not limit clinical trial participation.
Nous proposons une réflexion autour de l'accompagnement éducatif de personnes affectées par une maladie grave incurable accueillies en Maison d'accueil spécialisée. Dans l'objectif de problématiser la rencontre entre deux champs professionnels, celui des soins palliatifs et celui du handicap, nous proposons quelques repères nécessaires pour penser et construire la pratique professionnelle dans ce contexte.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.
Introduction: Intravenous lidocaine is an option for intractable pain caused by advancing cancer and wound care. We report a case of intractable cancer pain and wound care pain managed with concurrent use of lidocaine administered as a twice daily intravenous bolus in addition to continuous intravenous infusion.
Case Description: A 31-year-old male with rapidly progressing locally advanced squamous cell cancer affecting the gluteal area developed extensive painful and purulent ulcerating wounds affecting the coccyx, superior gluteal cleft, and buttocks. Laboratory tests were within normal limits, except for low albumin results. The patient's Palliative Performance Score was 60%. A trial of intravenous lidocaine 150 mg administered twice daily before dressing changes improved analgesia according to the patient's report. For additional improvement, a continuous intravenous infusion of lidocaine 1 mg/minute was initiated, in addition to the twice daily bolus infusions of lidocaine. The patient's pain score with dressing changes improved from 8–10 of 10 to 4–5 of 10 within 24 hours after initiation of the continuous intravenous lidocaine infusion. Lidocaine infusion was administered for a period of 45 days with targeted lidocaine blood levels not exceeding 5 mcg/mL. Twice daily lidocaine bolus infusions before dressing changes were administered for a total duration of 63 days. The lidocaine continuous intravenous infusion was discontinued on day 45 of therapy as a potential contributing factor to central nervous system adverse effects and in anticipation of transition to a subacute rehabilitation facility.
Discussion: Intravenous lidocaine added to the efficacy of standard analgesic medications and nerve block procedures in our patient. This case demonstrates increasing blood lidocaine levels with continuous intravenous infusion despite stable clinical parameters and laboratory markers of major organ function. Monitoring lidocaine levels is a prudent course of action to identify drug accumulation with administration of lidocaine by continuous intravenous infusion.
BACKGROUND: Diagnosis and treatment of incurable cancer as a life-changing experience evokes difficult existential questions.
AIM: A structured reflection could improve patients' quality of life and spiritual well-being. We developed an interview model on life events and ultimate life goals and performed a randomized controlled trial to evaluate the effect thereof on quality of life and spiritual well-being.
DESIGN: The intervention group had two consultations with a spiritual counselor. The control group received care as usual. EORTC QLQ-C15-PAL and the FACIT-sp were administered at baseline and 2 and 4 months after baseline. Linear mixed model analysis was performed to test between-group differences over time.
PARTICIPANTS: Adult patients with incurable cancer and a life expectancy >=6 months were randomized in a 1:1 ratio to the intervention or control group.
RESULTS: A total of 153 patients from six different hospitals were included: 77 in the intervention group and 76 in the control group. Quality of life and spiritual well-being did not significantly change over time between groups. The experience of Meaning/Peace was found to significantly influence quality of life (beta = 0.52, adj. R(exp2) = 0.26) and satisfaction with life (beta = 0.61, adj. R(exp2) = 0.37).
CONCLUSION: Although our newly developed interview model was well perceived by patients, we were not able to demonstrate a significant difference in quality of life and spiritual well-being between groups. Future interventions by spiritual counselors aimed at improving quality of life, and spiritual well-being should focus on the provision of sources of meaning and peace.
BACKGROUND: Goal setting is recognised as an important way of supporting people to live as actively as possible until death. However, there is little agreement about how goal setting should be handled or delivered by health professionals in everyday practice.
AIM: To investigate health-care practitioners' understanding and practice of patient-centred goal setting in a hospice.
METHODS: A comparative case study of 10 healthcare practitioners in one hospice. Non-participant observations (n=28), semi-structured interviews (n=10) and case-note analysis (n=67) were undertaken. Data were analysed using framework analysis.
RESULTS: Participants viewed goal setting as part of routine practice. However, goal setting focused around what was seen as important from the health practitioner's perspective, rather than being patient-centred. Participants' goal-setting practice was implicit and opportunities to support patients to pursue goals were missed. Participants emphasised problem solving and alleviating symptoms rather than focusing on patient priorities and establishing patient-centred goals.
CONCLUSION: While goal setting is valued, it is practiced in an implicit, practitioner-centred and inconsistent manner. A more explicit, person-centred goal setting process may support practitioners more consistently in helping patients to identify their priorities and enhance their quality of life.
BACKGROUND: People who engage in advance care planning (ACP) are more likely to receive health care that is concordant with their goals at the end of life. Little discussion of ACP occurs in primary care.
OBJECTIVE: The objective of this study was to describe primary care clinicians' perspectives on having ACP conversations with their patients.
METHODS: We conducted a survey of family physicians and non-physician clinicians in primary care in 2014-2015. We compared family physicians and non-physician clinicians on willingness, confidence, participation and acceptability for other clinicians to engage in six aspects of ACP (initiating, exchanging information, decision coaching, finalizing plans, helping communicate plans with family members and other health professionals) on scales from 0 = not at all/extremely unacceptable to 6 = very/all the time/extremely acceptable.
RESULTS: The response rate was 72% (n = 117) among family physicians and 69% (n = 64) among non-physician clinicians. Mean ratings (standard deviation [SD]) of willingness were high (4.5 [1.4] to 5.0 [1.2] for physicians; 3.4 [1.8] to 4.6 [1.6] non-physician clinicians). There was little participation (mean ratings 2.4 [1.7] to 2.7 [1.6] for physicians, 1.0 [1.5] to 1.4 [1.7] for non-physician clinicians). Non-physician clinicians rated confidence statistically significantly lower than physicians for all ACP aspects. Acceptability for non-physician clinician involvement was high in both groups (mean acceptability ratings greater than 4).
CONCLUSION: Current engagement of primary care clinicians in ACP is low. Given the high willingness and acceptability for non-physician clinician involvement, increasing the capacity of non-physician clinicians could enable uptake of ACP in primary care.
OBJECTIVES: Patients with indicators for palliative care, such as those with advanced life-limiting conditions, are at risk of futile cardiopulmonary resuscitation (CPR) if they suffer out-of-hospital cardiac arrest (OHCA). Patients at risk of futile CPR could benefit from anticipatory care planning (ACP); however, the proportion of OHCA patients with indicators for palliative care is unknown. This study quantifies the extent of palliative care indicators and risk of CPR futility in OHCA patients.
METHODS: A retrospective medical record review was performed on all OHCA patients presenting to an emergency department (ED) in Edinburgh, Scotland in 2015. The risk of CPR futility was stratified using the Supportive and Palliative Care Indicators Tool. Patients with 0-2 indicators had a 'low risk' of futile CPR; 3-4 indicators had an 'intermediate risk'; 5+ indicators had a 'high risk'.
RESULTS: Of the 283 OHCA patients, 12.4% (35) had a high risk of futile CPR, while 16.3% (46) had an intermediate risk and 71.4% (202) had a low risk. 84.0% (68) of intermediate-to-high risk patients were pronounced dead in the ED or ED step-down ward; only 2.5% (2) of these patients survived to discharge.
CONCLUSIONS: Up to 30% of OHCA patients are being subjected to advanced resuscitation despite having at least three indicators for palliative care. More than 80% of patients with an intermediate-to-high risk of CPR futility are dying soon after conveyance to hospital, suggesting that ACP can benefit some OHCA patients. This study recommends optimising emergency treatment planning to help reduce inappropriate CPR attempts.
OBJECTIVES: To determine the effectiveness of advance care planning (ACP) in frail older adults.
DESIGN: Cluster randomized controlled trial.
SETTING: Residential care homes in the Netherlands (N=16).
PARTICIPANTS: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation.
INTERVENTION: Adjusted Respecting Choices ACP program.
MEASUREMENTS: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics.
RESULTS: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found.
CONCLUSIONS: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.
Patients at end of life often express a desire to travel, and many have requests that go unfulfilled. Studies show that a majority of patients have a desire to return to their place of birth to die when presented with the option, yet goals-of-care conversations do not routinely include travel desires for numerous reasons. Patients faced with a life-limiting illness are at greater risk of depression, withdrawal, denial, anger, and feelings of helplessness. When palliative care teams assist patients with end-of-life travel, they empower them with a greater sense of control over the dying process. Improving goals-of-care conversations regarding medical travel begins with well-developed communication skills and a knowledge of available options. This article primarily focuses on the recommendation of medical travel as a goals-of-care comfort measure for the palliative care patient.
BACKGROUND: Older adults prefer comfort over life-sustaining care. Decreased intensity of care is associated with improved quality of life at the end-of-life (EOL).
OBJECTIVES: This study explored the association between advance directives (ADs) and intensity of care in the acute care setting at the EOL for older adults.
METHODS: A retrospective, correlational study of older adult decedents (N = 496) was conducted at an academic medical center. Regression analyses explored the association between ADs and intensity of care.
RESULTS: Advance directives were not independently predictive of aggressive care but were independently associated with referrals to palliative care and hospice; however, effect sizes were small, and the timing of referrals was late.
CONCLUSION: The ineffectiveness of ADs to reduce aggressive care or promote timely referrals to palliative and hospice services, emphasizes persistent inadequacies related to EOL care. Research is needed to understand if this failure is provider-driven or a flaw in the documents themselves.
BACKGROUND: Antimicrobial treatment is common at end of life. A treatment escalation/limitation plan (TELP) offers the opportunity to avoid non-beneficial treatment in critically ill patients. Our aim was to evaluate antimicrobial prescribing in terminally ill patients, and assess whether it was modified using a TELP.
METHODS: Appropriateness of antimicrobial treatment was audited using a priori criteria in 94 consecutive hospital deaths. Prescribing in patients whose death was expected/unexpected, and who had a TELP with/without a 'ceiling' for antimicrobials, were compared.
RESULTS: Twenty three of 94 patients (24.5%) were receiving antimicrobials at time of death. This was not influenced by evidence of infection or whether death was expected. The use of a TELP (n = 81) with an antimicrobial 'ceiling' (28 with, 53 without) was associated with a significant reduction in antimicrobials administered (28.6% vs 81.1%; p < 0.0005).
CONCLUSIONS: Many complex factors contribute to antimicrobial misuse at end of life. An appropriately constructed TELP reduces inappropriate prescribing.
BACKGROUND: Patient-centered care for older adults with CKD requires communication about patient's values, goals of care, and treatment preferences. Eliciting this information requires tools that patients understand and that enable effective communication about their care preferences.
METHODS: Nephrology clinic patients age = 60 years with stage 4 or 5 nondialysis-dependent CKD selected one of four responses to the question, "If you had a serious illness, what would be important to you?" Condensed versions of the options were, "Live as long as possible;" "Try treatments, but do not suffer;" "Focus on comfort;" or "Unsure." Patients also completed a validated health outcome prioritization tool and an instrument determining the acceptability of end-of-life scenarios. Patient responses to the three tools were compared.
RESULTS: Of the 382 participants, 35% (n=134) selected "Try treatments, but do not suffer;" 33% (n=126) chose "Focus on comfort;" 20% (n=75) opted for "Live as long as possible;" and 12% (n=47) selected "Unsure." Answers were associated with patients' first health outcome priority and acceptability of end-of-life scenarios. One third of patients with a preference to "Focus on comfort" reported that a life on dialysis would not be worth living compared with 5% of those who chose "Live as long as possible" (P<0.001). About 90% of patients agreed to share their preferences with their providers.
CONCLUSIONS: Older adults with advanced CKD have diverse treatment preferences and want to share them. A single treatment preference question correlated well with longer, validated health preference tools and may provide a point of entry for discussions about patient's treatment goals.
While terminal palliative care focuses primarily on the management of symptoms of immediate dying, early palliative care provides an opportunity for the patient and his loved ones to understand the trajectory of the illness, to receive support for coping with the diagnosis, increase the quality of decision-making to match the patients values and preferences. The emphasis is on realistic expectations of the outcome of treatment and timely anticipation of further disease course. The paper focuses on an overview of the evidence of palliative and supportive interventions, comparing the different trigger mechanisms for palliative intervention and presents the content of the intervention of the palliative team. The establishment and integration of the consultative palliative team in the tertiary hospital is described. An illustrative care report describes the goals of care conversation and its impact on advance care planning. Palliative care is widely accepted and recommended standard of high quality care for seriously ill patients. In the Czech Republic, it is necessary to extend its availability for patients hospitalized in acute care setting.
INTRODUCTION: Two-thirds of chronically ill patients do not have an advance directive. The primary aim of this study was to develop an intervention to increase the documentation of advance directives in elderly adults in an internal medicine resident primary care clinic. The secondary aims were to improve resident confidence in discussing advance care planning and increase the number of discussions.
METHODS: The study was a pre- and postintervention study. The study intervention was a 30-minute educational session on advance care planning. Study participants were patients aged 65 years and older who were seen in an internal medicine residency primary care clinic over a 6-month period and internal medicine residents. Clinic encounters were reviewed for the presence of advance care planning discussions before and after the intervention. Resident confidence was measured on a Likert scale.
RESULTS: Two hundred ninety-five eligible patients were seen in the clinic from January 1, 2017, to June 30, 2017, and included in the analysis performed between 2017 and 2018. The mean number of documented advance care planning discussions increased from 2.24 (95% confidence interval [CI]: 1.0-4.9) during the preintervention period to 8.94 (95% CI: 5.94-13.24]) during the postintervention period (P = .0011). Following the intervention, residents overall reported increased confidence in discussing advance care planning.
CONCLUSION: A relatively modest intervention to increase advance care planning discussions is feasible in an internal medicine primary care clinic and can improve the confidence of residents with end-of-life discussion.
OBJECTIVES: Advance care planning (ACP) is essential for patient-centred care in the last phase of life. There is little evidence available on the safety of ACP. This study characterises and explores patient safety incidents arising from ACP processes in the last phase of life.
METHODS: The National Reporting and Learning System collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports, April 2005-December 2015. Mixed-methods, combining structured data coding, exploratory and thematic analyses were undertaken to describe incidents, underlying causes and outcomes, and identify areas for improvement.
RESULTS: We identified 70 reports in which ACP caused a patient safety incident across three error categories: (1) ACP not completed despite being appropriate (23%, n=16). (2) ACP completed but not accessible or miscommunicated between professionals (40%, n=28). (3) ACP completed and accessible but not followed (37%, n=26). Themes included staff lacking the knowledge, confidence, competence or belief in trustworthiness of prior documentation to create or enact ACP. Adverse outcomes included cardiopulmonary resuscitation attempts contrary to ACP, other inappropriate treatment and/or transfer or admission.
CONCLUSION: This national analysis identifies priority concerns and questions whether it is possible to develop strong system interventions to ensure safety and quality in ACP without significant improvement in human-dependent issues in social programmes such as ACP. Human-dependent issues (ie, varying patient, carer and professional understanding, and confidence in enacting prior ACP when required) should be explored in local contexts alongside systems development for ACP documentation.