Background: Patients and their family have resistance in withholding parenteral nutrition (PN) when patient become unable to intake food in the end-of-life. We aimed to investigate whether the preference for PN is changed after receiving an individual education about the risk and benefit of PN. Additionally, we focused on the preferences of patients and their family and why they prefer it about the nutritional support in the end of life.
Methods: This is prospective study. Patients are eligible if they cannot tolerate oral intake and enteral feeding and have Palliative Performance Scale (PPS) =50% due to progressive cancer. After informed consent, investigators educated patients and family for an hour using the handouts. Then, patients decided if they will receive PN. Quality of life (QOL) was checked by European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL) weekly during 3 weeks. Symptoms related to fluid overloading or dehydration was surveyed weekly also. A social anthropologist participated as an observer or interviewer during whole process of this study.
Results: After education, 12 patients (80%) chose to keep receiving PN and 3 patients (20%) changed their decision from PN to minimal hydration among the 15 patients. More calories were administered to patients who chosen PN (median 1,042.2 vs. 324.3 Kcal/day, P<0.001) for initial 7 days. Overall survival, scores of QLQ-C15-PAL, and symptoms were not different with or without PN. According to the anthropologist, medical staffs regard PN as complex medical treatments, while patients and family recognize it as meal rather than medicine.
Conclusions: Most patients and family prefer to receive PN despite its potential harm and marginal benefit. An in-depth discussion about prognosis and aim of care must be preceded before a decision whether to receive PN can be made.
Although patient satisfaction scores have been used in the inpatient setting for more than a decade, they are new to the hospice and home care setting. Hospice organizations began tracking Consumer Assessment of Healthcare Providers & Systems (CAHPS) scores in 2017, and beginning in 2019, the scores became accessible by the public. The purpose of this quality improvement project was to determine whether improved communication techniques had a positive effect on CAHPS scores at an outpatient nonprofit hospice organization. The intervention was divided into 2 parts, improving communication among staff and improving education provided to patients and their caregivers. This pilot project was implemented over a 4-month period, and the CAHPS scores were compared with those from the 4 months before preceding implementation.
BACKGROUND: Cystic fibrosis (CF) is a life-limiting disease that results in premature death mainly due to respiratory failure. Literature suggests that for many people with CF end-of-life wishes are discussed too late or not at all, with most dying in hospital. The aim of this project was to improve end-of-life care for adults with CF.
DESIGN: Three improvement cycles were carried out over a 2-year period in one of the largest adult CF centres in Europe. The first cycle involved implementing regular multidisciplinary team (MDT) debriefs after a patient death with increased education. The second cycle involved codesigning a CF-specific advance care plan (ACP) with patients, families, bereaved relatives and experts across the UK, then implementing this into our service. The final cycle was designing a CF-specific end of life, online course for clinicians. Success was measured by: use of ACP and whether patients had died in their preferred location, patient feedback via a survey and satisfaction with the online course using a postcourse report.
RESULTS: The number of patients given the opportunity to discuss their end of life wishes increased from 10% to 85%. The number of patients who died in their preferred location increased from 7% to 85% over the 2-year project time. Patient feedback has been overwhelmingly positive. The key barrier has been changing MDT culture, overcoming this required the engagement of the whole team. The online course has been successful with 258 participants to date from 26 countries.
CONCLUSION: Education, staff support and a CF-specific ACP document empowered healthcare professionals to initiate difficult conversations to improve end-of-life care.
Importance: Despite requirements of informed consent, patients with advanced cancer often receive palliative chemotherapy (PC) without understanding that the likelihood of cure is remote.
Objective: To determine whether a PC educational video and booklet at treatment initiation could improve patients’ understanding of its benefits and risks.
Interventions: Regimen-specific PC videos and booklets presenting information about logistics, potential benefits, life expectancy (optional), adverse effects, and alternatives. Videos featured authentic patients sharing diverse experiences. After receiving treatment recommendations, research assistants distributed materials to patients for independent review.
Design, Setting, and Participants: Multicenter randomized clinical trial of patients with advanced colorectal or pancreatic cancer starting first-line or second-line PC in 5 US cancer centers with enrollment from June 2015 to September 2017 and follow-up to December 2019.
Main Outcomes and Measures: The primary outcome was accurate expectations of chemotherapy benefits at 3 months, defined as responding “not at all likely” to “What is your understanding of how likely the chemotherapy is to cure your cancer?” (from the Cancer Care Outcomes Research and Surveillance study). Secondary outcomes included understanding of adverse effects, decisional conflict (SURE test), regret (Decisional Regret Scale), and distress (Functional Assessment of Cancer Therapy–General emotional well-being subscale).
Results: Among 186 patients with advanced colorectal or pancreatic cancer who were starting first-line or second-line PC (94 randomized to usual care, 92 to intervention; mean [SD] age, 59.3 [12.6] [range, 28-86] years; 107 [58%] male; 118 [63.4%] colorectal and 68 [36.6%] pancreatic cancer), most patients wanted “a lot” of information or “as much information as possible” about adverse effects (149, 80.1%), likelihood of cure (148, 79.6%), and prognosis (148, 79.6%). Among the intervention arm, 59 (78%) reviewed the booklet and 30 (40%) reviewed the video within 2 weeks. The primary outcome did not differ between intervention and control arms (52.6%; 95% CI, 40.3%-65.0%; vs 55.5%; 95% CI, 45.1%-66.0%). Accurate adverse effect understanding was more common among intervention than control patients (56.0%; 95% CI, 44.3%-67.7%; vs 40.2%; 95% CI, 29.5%-50.9%; P = .05), although this did not meet the threshold for statistical significance. The intervention did not increase distress, despite frank prognostic information. Other secondary outcomes were similar.
Conclusions and Relevance: Provision of an educational video and booklet did not alter patients’ expectation of cure from PC. Alternative delivery strategies, such as integration with nurse teaching, could be explored in future studies.
OBJECTIVE: Communication and patient-centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour "starting a conversation about palliative care with a professional carer" from the perspective of people with incurable cancer.
METHODS: A qualitative study using semi-structured face-to-face interviews with 25 people with incurable cancer: 13 not (yet) receiving palliative care and 12 receiving palliative care; 4 started the conversation themselves. Determinants related to the defined behaviour were matched with concepts in existing behavioural theories.
RESULTS: Both positive and negative stances towards starting a conversation about palliative care with a professional carer were found. Influencing behavioural factors were identified, such as knowledge (e.g. about palliative care), attitude (e.g. association of palliative care with quality of life) and social influence (e.g. relationship with the professional carer). We modelled the determinants into a behavioural model.
CONCLUSION: The behavioural model developed helps to explain why people with incurable cancer do or do not start a conversation about palliative care with their professional carer. By targeting the modifiable determinants of the model, promising interventions can be developed to help patients taken the initiative in communication about palliative care with a professional carer.
Background: Patients with advanced cancer and their caregivers have substantial misperceptions regarding hospice, which contributes to its underuse.
Methods: The authors conducted a single-site randomized trial of a video educational tool versus a verbal description of hospice in 150 hospitalized patients with advanced cancer and their caregivers. Patients without a caregiver were eligible. Intervention participants (75 patients and 18 caregivers) viewed a 6-minute video depicting hospice. Control participants (75 patients and 26 caregivers) received a verbal description identical to the video narrative. The primary outcome was patient preference for hospice. Secondary outcomes included patient and/or caregiver knowledge and perceptions of hospice, and hospice use.
Results: Between February 2017 and January 2019, approximately 55.7% of eligible patients (150 of 269 eligible patients) and 44 caregivers were enrolled. After the intervention, there was no difference noted with regard to patients' preferences for hospice (86.7% vs 82.7%; P = .651). Patients in the video group reported greater knowledge regarding hospice (9.0 vs 8.4; P = .049) and were less likely to endorse that hospice is only about death (6.7% vs 21.6%; P = .010). Among deceased patients, those assigned to the intervention were more likely to have used hospice (85.2% vs 63.6%; P = .01) and to have had a longer hospice length of stay (median, 12 days vs 3 days; P < .001). After the intervention, caregivers assigned to view the video were more likely to prefer hospice for their loved ones (94.4% vs 65.4%; P = .031), reported greater knowledge concerning hospice (9.7% vs 8.0%; P = .001), and were less likely to endorse that hospice is only about death (0.0% vs 23.1%; P = .066).
Conclusions: A hospice video did not significantly impact patients' preferences for hospice care. Patients with advanced cancer and their caregivers who were assigned to view the video were more informed regarding hospice and reported more favorable perceptions of hospice. Patients were more likely to use hospice and to have a longer hospice length of stay.
Background: Nurses feature prominently in promoting advance care planning (ACP), but only a limited amount of relevant research has been conducted from the nurses' viewpoint, and little is known about the nurses' knowledge of and their willingness to promote ACP in China.
Aims: The aims of this study were to investigate oncology nurses' knowledge of and their willingness to promote ACP, and to explore associated factors.
Methods: A multi-centre study was conducted to investigate 350 nurses in the oncology departments of four university hospitals in southwestern China. Cluster sampling was used in data collection, which involved three categories of questionnaires concerning demographic characteristics, knowledge about ACP and willingness to promote ACP. Chi-squared tests and multiple linear regression were employed in data analysis.
Results: Some 293 valid questionnaires were collected, among which, 60.1% of respondents never received palliative care education, 89.1% never received training about ACP and 72.7% had not even heard of ACP. Nurses with higher position titles ( 2=18.41, p<0.001) and longer working experience ( 2=12.25, p=0.001) were more likely to have received palliative care education; nurses with higher educational background levels ( 2=12.91, p<0.001), higher position titles ( 2=9.77, p=0.003) and longer working experience ( 2=7.92, p=0.006) were more likely to have learned about ACP; nurses with higher position titles had more access to relevant training ( 2=5.10, p=0.03). Furthermore, whether the nurse had ‘heard about ACP’ (B=3.113, p=0.018) and ‘received training about ACP’ (B=3.894, p=0.04) were both associated with their willingness to promote ACP.
Conclusions: The findings of this study indicated that oncology nurses were highly inclined to promote ACP, but limited by their lack of knowledge and understanding of it. Therefore, a systematic and adequate training programme about ACP for nurses is an urgent requirement to effectively enhance the implementation of ACP in China.
Background: Heart failure (HF) impacts 6.2 million American adults. With no cure, therapies aim to prevent progression and manage symptoms. Inclusion of palliative care (PC) helps improve symptoms and quality of life. Heart failure guidelines recommend the inclusion of PC in HF therapy, but referrals are often delayed.
Objective: Introduce PC to patients with HF and examine the impact on PC consults, readmission, mortality, and intensive care unit (ICU) transfers.
Methods: Patients (n = 60) admitted with HF to an academic hospital were asked to view a PC educational module. A number of PC consults, re-admissions, mortality, and transfers to the ICU were compared among participants and those who declined.
Results: Nine patients in the intervention group (n = 30) requested a PC consult ( P = .042) versus 2 in the usual care group (n = 30; P = .302). There was no statistically significant difference in readmissions, mortality, or ICU transfers between groups.
Conclusions: Palliative care education increases the likelihood of PC utilization but in this short-term project was not found to statistically impact mortality, re-admissions, or transfers to higher levels of care.
Les difficultés financières, l’absence de couverture sociale et la pénurie médicale contribuent à ce que, en Ouganda, de nombreux malades et leurs familles soient livrés à eux-mêmes. Pourtant les équipes soignantes et les associations se mobilisent pour diffuser la culture palliative dans le respect des diversités culturelles. Très autonomes dans leur expertise clinique, les infirmières dispensent des soins et vont à la rencontre des patients à domicile.
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.
Background: Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.
Methods: This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.
Discussion: The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.
Background: Isometric paravertebral muscle training (IPMT) may improve mobility, pain, and quality of life (QOL) in cancer patients with spinal metastases. However, this regimen remains unproven in patients with unstable spinal metastases (USM), a population at high risk for clinical exacerbation with such interventions. Thus, we conducted this exploratory, non-blinded, randomized controlled trial (NCT02847754) to evaluate the safety/feasibility of IPMT and secondarily assess pain, bone density, pathologic fracture rate, and QOL.
Methods: All patients had histologically/radiologically confirmed USM (per Taneichi score) and underwent non-operative management with 5–10 fractions of palliative radiotherapy (RT). Randomization (1:1) groups were IPMT (intervention, INT) or muscle relaxation (control, CON); both lasted 15 min/day and started concurrently with radiotherapy. The primary endpoint was feasibility (completion of training programs three months post-RT). Secondary endpoints were pain response (Visual Analog Scale) and opioid consumption, bone density and pathologic fracture rate, and QOL (European Organization for Research and Treatment of Cancer, EORTC questionnaires).
Results: Sixty patients were randomized and 56 received protocol therapy. Mean survival in both groups was 4.4 months. There were no adverse events with either training regimen. Altogether, =80% of the planned sessions were completed by 55% (n = 16/29) in CON and 67% (n = 18/27) in INT. Regarding the post-radiotherapy home-based training, =80% of planned sessions were completed by 64% (n = 9/14) of the INT cohort. There were no differences in pain scores, opioid consumption, or bone density between arms (p > 0.05 for all). No difference was observed between groups regarding new pathological fractures (INT: n = 1 vs. CON: n = 3) after three months (p = 0.419). There were no QOL differences between arms (all parameters p > 0.05).
Conclusions: IPMT is potentially feasible for high-risk USM patients. Future trials adequately powered for relevant endpoints are thus recommended.
Only 2.3% of patients at a Midwest home healthcare (HH) agency had documented advance directives (ADs), compared with 28% nationally. Of concern, this HH agency lacked standardized procedures for advance care planning (ACP) leading to inadequate staff knowledge regarding end-of-life, avoidable hospital readmissions, and delayed transitions into hospice care. Lack of ADs is directly correlated to higher hospital readmission rates and lower hospice length of stay. The purpose of this initiative was to develop evidence-based procedures using the Respecting Choices ACP model to: 1) educate staff, 2) increase ACP conversations offered and completed among high-risk patients, 3) increase Practitioner Orders for Life-Sustaining Treatment (POLST) rates, 4) reduce 60-day hospital readmissions, and 5) support hospice care admissions. Staff received discipline-specific education on ACP/ADs. The Knowledge-Attitudinal-Experiential Survey on Advance Directives (KAESAD), assessed staff ACP/AD knowledge, confidence, and experiences. Standardized electronic medical record tools were created to track ACP conversations, POLST rates, 60-day hospital readmissions, and hospice admissions. Paired t-test and chi-square analyses compared changes pre- and post implementation. The KAESAD survey was analyzed for 75 staff (100%) and demonstrates improvement in knowledge, confidence, and experiences. Data also demonstrate increases in: ACP offered 6% to 80% (p < .001); ACP conversations completed 4% to 31% (p < .001); POLST rates 26% to 43.6% (p = .059); decreased 60-day hospital readmissions 40% to 20% (p = .025); whereas hospice care admissions was not impacted ranging from 10% to 5.5% (p = .381). Respecting Choices serves as an effective ACP framework to improve ACP conversations, POLST rates, and hospital readmissions.
Advance care planning (ACP) is an increasingly important topic in primary care as more patients with multiple comorbidities and chronic diseases are living longer owing to advances in medical treatment. Family physicians are well positioned to guide ACP discussions given the longitudinal care they provide, yet many physicians, including resident physicians, feel uncomfortable directing these conversations. In this article we will describe ACP and its importance, as well as present a framework that we have developed to guide the ACP process.
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Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
Background: In-Home Supportive Services (IHSS) cares for millions of Medicaid-eligible older adults who are often homebound and socially isolated. Advance care planning (ACP) can be challenging for this population, and IHSS programs may play an important role.
Objective: To explore the feasibility of an IHSS ACP program for frail older adults.
Design: Semistructured focus groups.
Setting/Subjects: ifty IHSS stakeholders (20 administrators, 9 case managers, 13 in-home caregivers, and 8 clients) participated in 10 focus groups in San Francisco.
Measurements: Qualitative thematic content analysis by two independent coders.
Results: Four main themes emerged: (1) Unmet needs: patients' wishes unknown during a medical crisis, lack of education/training for clients and staff; (2) Barriers: conflict of interest and potential medical overreach of IHSS caregivers, lack of billing avenues, time limitations, and cultural, literacy, and language barriers; (3) Facilitators: leveraging established workflows, available technology, and training programs; and (4) Implementation: use a tailored, optional approach based on clients' readiness, focus on case managers not caregivers to prevent conflict of interest; use established intake, follow-up, and training procedures; consider cultural and literacy-appropriate messaging; and standardize easy-to-use procedures, simple scripts, and educational guides, within established workflow to support case managers.
Conclusions: An IHSS ACP program is important and feasible for Medicaid-eligible, frail older adults. Implementation suggestions for success by IHSS stakeholders include focusing on case managers rather than in-home caregivers to prevent conflict of interest; tailoring programs to clients' readiness, literacy, and language; creating educational programs for IHSS staff, clients, and community; and standardizing easy-to-use guides and procedures into IHSS workflows.
STUDY DESIGN: Retrospective Analysis of a Quality Improvement Program.
PURPOSE: To describe the development, implementation, and outcomes of an inpatient rehabilitation-based Short Stay Family Training (SSFT) program for patients with life-limiting conditions.
BACKGROUND: Patients with terminal illnesses often have functional limitations that prohibit discharge home after hospitalization, but their condition limits their ability to participate in rehabilitation in an inpatient setting.
METHODS AND MEASURES: After a needs assessment, an interdisciplinary team developed an SSFT program to empower patients, caregivers, and family members by giving them the tools to be independent in caring for a patient with a life-limiting condition. Patients qualifying for the program were tracked in terms of acute care physical therapy and occupational therapy discharge recommendations, diagnosis, inpatient rehabilitation unit length of stay (LoS), caregiver involvement, and discharge location. Data were retrospectively analyzed from patients over the first 16 months.
RESULTS: Since program implementation, 30 patients and their family members participated in the program. Overall, these patients experienced decreased LoS, increased discharge to home, and increased palliative care involvement in the plan of care.
CONCLUSION: Short Stay Family Training is a viable alternative to traditional inpatient rehabilitation to allow patients with life-limiting conditions to discharge home safely with caregiver support.
Background: In Canada, there is a growing need to develop community-based, culturally appropriate palliative care for Indigenous people living in First Nations communities. The public health approach to palliative care, which emphasizes community-based initiatives, is especially relevant in First Nations communities because care is grounded in their distinct social and cultural context. Central to the public health approach are educational strategies that strengthen communities' capacity to care for their vulnerable members as they die. This paper presents community-based research conducted with First Nations communities in Canada that aimed to assess and address local palliative care educational needs to improve community capacity in palliative care.
Methods: Participatory action research (PAR) was conducted with four First Nations communities in Canada over a six-year period (2010-2016). The research occurred in three phases. Phase 1: focus groups, interviews and surveys were employed to assess community specific needs and resources. Phase 2: recommendations were developed to guide the PAR process. Phase 3: educational resources were created to address the identified educational needs. These resources were implemented incrementally over 4 years. Ongoing process evaluation was employed, and revisions were made as required.
Results: Educational needs were identified for patients, families, community members and internal and external health care providers. A wide and comprehensive range of educational resources were created to address those needs. Those culturally appropriate educational resources are available in a very accessible and useable workbook format and are available for use by other Indigenous people and communities.
Conclusions: This research provides an example of the public health approach and offers implementation strategies around palliative care education. This paper contributes to the international literature on the public health approach to palliative care by presenting a case study from Canada that includes: conducting a culturally appropriate assessment of educational needs, creating recommendations, facilitating development and implementation of educational resources in the community to improve community capacity in palliative care.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.