To investigate the effect of multidisciplinary interventions on pain management in cancer inpatients.
Four hundred thirty eight patients with cancer pain, who performed the multidisciplinary intervention were recruited. Before and after intervention, the Brief Pain Inventory (BPI) and the MD Anderson Symptom Inventory (MDASI) score as the primary endpoints and QOL scores as the secondary endpoint were all evaluated. To investigate the factors that led to different responses to multidisciplinary interventions, patients were classified as non-responders or responders.
Finally, 92 patients (63 male and 29 female) scheduled for cancer pain management by inter-professional team were studied. After individualized multidisciplinary therapy, both pain and symptom severity was improved, as demonstrated by lowered BPI worst and average pain scores, as well as symptom severity score measured by MDASI (P = .017, P = .003, and P = .011, respectively). The proportion of patients with mild pain increased regarding the BPI worst and average pain at baseline and after treatment (P < .05). The QOL analyses showed multidisciplinary interventions could significantly improve the function and symptom scores (P < .001). More patients in responder group received chemotherapy (58, 70.7%, P = .003), while fewer received mini-invasive therapy (6, 7.32%, P = .011).
Multidisciplinary interventions had certain beneficial effect on cancer pain management, especially in patients with moderate or severe pain.
The loss of a loved one causes the world and the place of the bereaved survivor in it to change irreversibly. A key aspect of the grieving process is the integration of the loss in the bereaved survivor’s life story, identity change, and a new future orientation through meaning attribution. Meaning attribution can have favourable or unfavourable effects on the grieving process and hence determines the extent to which a loss disrupts the bereaved survivor’s functioning. A framework of meaning attribution after loss is presented, comprising 17 determinants that fall into five categories: event-related, cultural, social, individual and relational determinants. Each determinant may lead to both positive and negative meanings, thereby facilitating or complicating the grieving process. The framework of meaning attribution highlights the importance of an integrated network for mental health care, spiritual care, and end-of-life care in the prevention and treatment of traumatic grief. It also emphasizes the support from relatives, collective rituals, cultural views, legal settlements, and other societal factors that may foster or impede adaptation to loss. The framework of meaning attribution informs research across a range of research themes, including specialist care for traumatic grief, a culturally sensitive care network for traumatic grief, and improving care for ambiguous loss in a global context.
Background: Palliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.
Aim: To identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.
Design: Within the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.
Setting/participants: Loved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.
Results: 993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.
Conclusions: It is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.
Trial registration number This study was registered at the German Clinical Trials Register (DRKS00013916).
OBJECTIVE: To know the facilities and difficulties the palliative care team professionals experience in the implementation process of advance healthcare directives.
METHOD: Exploratory-descriptive study with a qualitative approach, involving 51 professionals from seven palliative care teams in the state of Rio Grande do Sul, Brazil. The data were collected between December 2018 and April 2019 and discursive textual analysis was applied.
RESULTS: The facilities found were: the approach by the palliative care team; listening and respecting patients' wishes; effective communication between professionals, patients, and family members and resolution of difficult situations. The difficulties reported were: legal issues; the lack of knowledge of professionals about the subject; the lack of institutional protocols; the difficulty in talking about death and the family barrier.
CONCLUSION: Despite the perceived facilities and difficulties, palliative care professionals intend to work based on the patients' desires and will, aiming to offer dignity in the dying process.
Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
The following self-analysis contains key experiences of maternal grief over the course of the first 2 years following the death of a child, with specific examples and observations from bereaved mothers shared with the author. The references provide supporting evidence for commonality of the lived experience and observations. Therapeutic responses for clinicians give concrete direction for providing effective comfort. Self-care suggestions for mothers provide specific guidance for the readers. A 14-year retrospective epilogue puts the charged emotional description into a context of healing.
Introduction: It has been suggested that palliative care integrated into standard cancer treatment from the early phase of the disease can improve the quality of life of patients with cancer. In this paper, we present the protocol for a multicentre randomised controlled trial to examine the effectiveness of a nurse-led, screening-triggered, early specialised palliative care intervention programme for patients with advanced lung cancer.
Methods and analysis: A total of 206 patients will be randomised (1:1) to the intervention group or the control group (usual care). The intervention, triggered with a brief self-administered screening tool, comprises comprehensive need assessments, counselling and service coordination by advanced-level nurses. The primary outcome is the Trial Outcome Index of the Functional Assessment of Cancer Therapy (FACT) at 12 weeks. The secondary outcomes include participants’ quality of life (FACT-Lung), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), illness perception (Prognosis and Treatment Perceptions Questionnaire), medical service use and survival. A mixed-method approach is expected to provide an insight about how this intervention works.
Ethics and dissemination: This study has been approved by the Institutional Review Board of the National Cancer Center Japan (approval number: 2016-235). The findings will be disseminated through peer-reviewed publications and conference presentations and will be reflected on to the national healthcare policy.
Trial registration number UMIN000025491.
BACKGROUND: In the Arab and Islamic world, data on palliative and end-of-life (PEOL) care education are minimal.
OBJECTIVES: The current study's primary aim was to identify what PEOL care education is delivered to undergraduate nurses in Egypt and the teaching strategies used to deliver this education. A secondary aim was to assess the feasibility of using online surveys in nursing research in Egypt.
DESIGN: This is a cross-sectional survey.
SETTINGS: Ten randomly selected faculties of nursing across Egypt.
PARTICIPANTS: Nursing educators who were working at three academic departments; Medical-Surgical Nursing, Critical Care Nursing, and Gerontological Nursing; in the participating faculties.
METHODS: After face-to-face recruitment of participants, data were collected using an online questionnaire with an adjunctive use of paper questionnaires. The questionnaire assessed participants' and courses' characteristics, the inclusion of the PEOL Care Index content in the surveyed courses, and teaching strategies used to deliver this content.
RESULTS: A total of 95 nursing educators were involved in the current study (response rate = 86.4%). All participants were female, and 87.4% responded via online questionnaires. The overall coverage of the PEOL care content ranged from 76% to 100%. End-of-life care and spiritual care were the least frequently reported PEOL care topics; on average, by 19.6% and 36% of the educators, respectively. Lecture was the most frequently used teaching strategy, followed by clinical field practice (mean percentages of utilization: 77.7% and 53.6%, respectively).
CONCLUSIONS: In Egypt, most PEOL care topics are covered in undergraduate nursing curricula. Yet, educating these topics is predominantly theoretical. End-of-life care and spiritual care are the least frequently covered PEOL care topics. Online surveys are feasible for multisite curricular assessment, and this feasibility may be augmented by face-to-face recruitment of participants and adjunctive use of paper questionnaires.
Introduction: Healthcare professionals (HCPs) experience difficulties in timely recognising and directing palliative care (PC) needs of their patients with chronic heart failure (CHF). The aim of this study was to develop a comprehensive tool to enable HCPs in timely recognising and directing PC needs in CHF.
Methods: A four-stage mixed-method study was performed. Stage 1: identification of needs and questions of patients and families; stage 2: prioritisation and refinement of the needs and questions; stage 3a: testing and online feedback on V.1; stage 3b: selecting and refining care recommendations; stage 4: testing and review of V.2. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. In total, 16 patients, 12 family members and 54 HCPs participated.
Results: A comprehensive set of 13 PC needs was identified, redefined and tested. The resulting tool, called Identification of patients with HeARt failure with PC needs (I-HARP), contains an introduction prompt with open questions to start the conversation, 13 closed screening questions with additional in-depth questions, and recommendations on actions for identified needs.
Conclusion: I-HARP contains an evidence-based set of questions and palliative CHF care suggestions for HCPs in the Netherlands. The resulting tool, approved by HCPs, patients and family members, is a promising guidance for HCP to timely recognise and direct PC needs in CHF.
La loi Claeys-Léonetti modifie de manière importante les dispositions concernant la fin de vie. Elles ont pour objectif de mettre en avant les décisions et les choix des patients en rendant opposables leurs directives anticipées et en leur permettant d’opter pour une sédation profonde et continue maintenue jusqu’à la fin de la vie. Ces modifications mettent en jeu les pratiques des soignants, qu’ils soient médecins ou personnels soignants. Elles ont une répercussion particulière dans les Ehpad, où sont accueillis une grande proportion de sujets en perte d’autonomie et souvent dans l’incapacité d’énoncer leurs volontés. À partir d’un cas clinique, nous mènerons une réflexion sur les enjeux et les difficultés rencontrées afin de traiter cette situation où sont impliqués de nombreux intervenants.
Purpose: To evaluate factors associated with continuation of systemic anti-cancer therapy (SACT) after palliative care consultation, and SACT administration in the last 30 days of life, in outpatients with cancer referred to palliative care. Timing of referral was of particular interest.
Methods: Patient, disease, and treatment-related factors associated with SACT before and after palliative care, and in the last 30 days of life, were identified using 3-level multinomial logistic regression. Referral to palliative care was categorized by time from death as early (>12 months), intermediate (6-12 months), and late (=6 months).
Results: Of the 337 patients, 240 (71.2%) received SACT for advanced cancer; of these, 126 (52.5%) received SACT only prior to palliative care while 114 (47.5%) also received SACT afterward. Only 35/337 (10.4%) received SACT in the last 30 days of life. On multivariable analysis, factors associated with continuing SACT after palliative care consultation were a cancer diagnosis for <1 year (OR 3.09, p = 0.01), breast primary (OR 11.88, p = 0.0008), and early (OR 28.8, p < 0.001) or intermediate (OR 6.67, p < 0.001) referral timing. No factors were significantly associated with receiving SACT in the last 30 days versus earlier, but the median time from palliative care referral to death in those receiving SACT in the last 30 days versus stopping SACT earlier was 1.78 versus 4.27 months.
Conclusion: Patients who received SACT following palliative care consultation were more likely to be referred early; however, patients receiving SACT in their last 30 days tended to be referred late.
INTRODUCTION: Current research on prostate cancer is heavily focused on early detection and new treatments. There is a lack of research on the overall morbidity prostate cancer survivors face and the amount of healthcare treatment they receive toward the end of their lives. Identifying these care needs will allow appropriate healthcare modeling, resource allocation and service re-design to ensure higher quality care toward the end of life. The aim of this study is to quantify and analyze the use of healthcare services by patients dying with but not necessarily of prostate cancer.
METHODS: All patients who died with a diagnosis of prostate cancer during a 2-year period at a single hospital were included. Data on outpatient attendances, elective and emergency admissions and palliative care involvement in the 12 months prior to death were collected.
RESULTS: A total of 77 patients were included and of these, 60 (78.0%) had 545 scheduled appointments with 473 (86.8%) attendances. More non-attendances occurred in the last 6 months of life; 56 vs 16, p < 0.001. Nurse led clinics doubled in the last 6 months of life, 117 vs 66. There were 173 admissions from 63 (81.8%) patients resulting in 1816 days inpatient stay. This averaged to 2.7 admissions per patient for 10.5 days per episode. 32 (41.6%) patients were seen by palliative care resulting in 192 visits in total. 78 (40.6%) were inpatient and 114 (59.4%) were community reviews.
CONCLUSIONS: In the last year of life, prostate cancer patients use a considerable amount of healthcare resources. Understanding this clinical and economical burden is important for healthcare remodeling to provide better quality care that is cost effective.
Background: Timely palliative care in frail older persons remains challenging. Scales to identify older patients at risk of functional decline already exist. However, factors to predict short term mortality in older hospitalized patients are scarce.
Methods: In this prospective study, we recruited patients of 75 years and older at the department of cardiology and geriatrics. The usual gait speed measurement closest to discharge was chosen. We used the risk of dying within 1 year as parameter for starting palliative care. ROC curves were used to determine the best cut-off value of usual gait speed to predict one-year mortality. Time to event analyses were assessed by COX regression.
Results: On the acute geriatric ward (n = 60), patients were older and more frail (assessed by Katz and iADL) in comparison to patients on the cardiology ward (n = 82); one-year mortality was respectively 27 and 15% (p = 0.069). AUC on the acute geriatric ward was 0.748 (p = 0.006). The best cut-off value was 0.42 m/s with a sensitivity and specificity of 0.857 and 0.643. Slow walkers died earlier than faster walkers (HR 7.456, p = 0.011), after correction for age and sex. On the cardiology ward, AUC was 0.560 (p = 0.563); no significant association was found between usual gait speed and survival time.
Conclusions: Usual gait speed may be a valuable prognostic factor to identify patients at risk for one-year mortality on the acute geriatric ward but not on the cardiology ward.
Si le deuil compliqué est aujourd’hui une entité clinique reconnue chez l’adulte, il reste encore particulièrement difficile à appréhender chez l’enfant, tout comme le sont les autres complications du deuil. Dans le présent article, nous rappelons d’abord la spécificité du deuil chez l’enfant. Puis, nous évoquons ce qu’il en est des complications du deuil infantile. Et finalement, nous abordons les perspectives de prises en charge possibles de ces enfants et de leurs proches dans ces contextes si spécifiques de deuil compliqué.
Objectives: The aim of this work is to describe the multidisciplinary model of intervention applied and the characteristics of some COVID-19 patients assisted by the hospital palliative care unit (UCP-H) of an Italian hospital in Lombardy, the Italian region most affected by the COVID-19 pandemic.
Methods: A retrospective study was conducted on patients admitted to the A. Manzoni Hospital (Lecco, Lombardy Region, Italy) and referred to the UCP-H between 11 March 2020 and 18 April 2020, the period of maximum spread of COVID-19 in this area. Data were collected on the type of hospitalisation, triage process, modality of palliative care and psychological support provided.
Results: 146 COVID-10 patients were referred to the UCP-H. Of these, 120 died during the observation time (82%) while 15 (10.2%) improved and were discharged from the UCP-H care. 93 had less favourable characteristics (rapid deterioration of respiratory function, old age, multiple comorbidities) and an intensive clinical approach was considered contraindicated, while 48 patients had more favourable presentations. Mean follow-up was 4.8 days. A mean of 4.3 assessments per patient were performed. As to respiratory support, 94 patients were treated with oxygen only (at different volumes) and 45 with Continuous Positive Airway Pressure (CPAP).
Conclusion: The ongoing pandemic highlighted the need for dedicated palliative care teams and units for dying patients. This work highlights how palliative medicine specialist can make a fundamental contribution thanks to their ability and work experience in an organised multiprofessional context.
Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.
Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.
Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).
Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.
PURPOSE: To examine the effect of education on nursing personnel's knowledge and attitudes regarding the use of hand massage, breathing techniques, and essential oils with hospice and palliative care patients.
BACKGROUND: Unrelieved, end of life pain is common among hospitalized patients on hospice and palliative care units. Integrative care techniques such as hand massage, breathing techniques, and essential oils can be available to use with these individuals. Nursing personnel are often unaware of other techniques that are not a traditional pharmacology approach to pain.
METHODS: A quasi-experiment was conducted to evaluate the effect of an educational intervention on nursing personnel's knowledge and attitudes regarding the use of three integrative care techniques (hand massage, breathing techniques, and essential oils) with hospice and palliative care patients in an acute care setting. Data on knowledge and attitudes were collected pre- and postintervention.
RESULTS: Following the intervention, improvements in nursing personnel's attitudes and knowledge toward the use of the three techniques were found.
CONCLUSION: Results of this study suggest that education of nursing personnel may positively influence knowledge and attitudes toward providing hand massage, breathing techniques, and essential oil for end of life patients.
Objective: The purpose of this study was to explore healthcare provider-perceived challenges to HBPC patient referral and elicited providers’ feedback for overcoming these challenges.
Methods: We conducted a qualitative study using semi-structured interviews with 25 Medicaid managed care providers (primary care physicians, nurse practitioners, and care managers) working in the greater Los Angeles area. Our interview protocol elicited providers’ knowledge and awareness of palliative care; perceived barriers to HBPC referral; and suggestions for overcoming these barriers. We analyzed verbatim transcripts using a grounded theory approach.
Results: Themes related to referral barriers included providers’ lack of palliative care knowledge and clarity regarding referral processes, provider reluctance to refer to HBPC, and provider culture. Providers also identified patient-level barriers, including financial barriers, reluctance to have home visits, health literacy, cultural barriers, and challenges related to living situations. Themes related to methods for overcoming challenges included increased HBPC education and outreach to providers, specifically by HBPC agency staff.
Conclusions: Findings from this study underscore the need for additional palliative care education for Medicaid healthcare providers. They point to the need for novel strategies and approaches to address the myriad barriers to patient identification and referral to HBPC.
Background: With increasing cost of healthcare in our aging society, a consistent pain point is that of end-of-life care. It is particularly difficult to prognosticate in non-cancer patients, leading to more healthcare utilisation without improving quality of life. Additionally, older adults do not age homogenously. Hence, we seek to characterise healthcare utilisation in young-old and old-old at the end-of-life.
Methods: We conducted a single-site retrospective review of decedents under department of Advanced Internal Medicine (AIM) over a year. Young-old is defined as 65–79 years; old-old as 80 years and above. Data collected was demographic characteristics; clinical data including Charlson Comorbidity Index (CCI), FRAIL-NH and advance care planning (ACP); healthcare utilisation including days spent in hospital, hospital admissions, length of stay of terminal admission and clinic visits; and quality of end-of-life care including investigations and symptomatic control. Documentation was individually reviewed for quality of communication.
Results: One hundred eighty-nine older adult decedents. Old-old decedents were mostly females (63% vs. 42%, p = 0.004), higher CCI scores (7.7 vs 6.6, p = 0.007), similarly frail with lower polypharmacy (62.9% vs 71.9%, p = 0.01). ACP uptake was low in both, old-old 15.9% vs. young-old 17.5%. Poor prognosis was conveyed to family, though conversation did not result in moderating extent of care.
Old-old had less healthcare utilisation. Adjusting for sex, multimorbidity and frailty, old-old decedents had 7.3 ± 3.5 less hospital days in their final year. Further adjusting for cognition and residence, old-old had 0.5 ± 0.3 less hospital admissions. When accounted for home care services, old-old spent 2.7 ± 0.8 less hospital days in their last admission.
Conclusion: There was high healthcare utilisation in older adults, but especially young-old. Enhanced education and goal-setting are needed in the acute care setting. ACP needs to be reinforced in acute care with further research to evaluate if it reduces unnecessary utilisation at end-of-life.