scholarly journals How Do Patients with Life-Limiting Illness and Caregivers Want End-Of-Life Prognostic Information Delivered? A Pilot Study

Healthcare ◽  
2021 ◽  
Vol 9 (7) ◽  
pp. 784
Author(s):  
Ebony T. Lewis ◽  
Kathrine A. Hammill ◽  
Maree Ticehurst ◽  
Robin M. Turner ◽  
Sally Greenaway ◽  
...  

We aimed to identify the level of prognostic disclosure, type of prognostic information and delivery format of prognostic communication that older adults diagnosed with a life-limiting illness or caregivers prefer to receive. We developed and pilot tested an open-ended survey to 15 older patients and caregivers who had experience in health services for life-limiting illness either for a relative, friend or themselves. Five hypothetical clinical scenarios of prognostic options were presented to ascertain preferences. The preferred format to receive prognostic information was verbal delivery by the clinician with a written summary. Photos and videos were less favoured, and a table with numbers/percentages was least preferred. Distress levels to the prognostic scenarios were low, with the exception of a photo. We conclude that older patients/caregivers want end-of-life prognostic information delivered the traditional way, verbally by clinicians. Options to deliver prognostic information may vary across patient groups but empower clinicians in introducing end-of-life discussions with patients/caregivers. Our study illustrates the feasibility of involving terminal patients and caregivers in research that contributes to eliciting prognostic preferences. Further research is needed to understand whether the prognostic preferences of hospitalized patients with life-limiting illness differ.

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Justyna Mika ◽  
Joanna Tobiasz ◽  
Joanna Zyla ◽  
Anna Papiez ◽  
Małgorzata Bach ◽  
...  

AbstractIn the DECODE project, data were collected from 3,114 surveys filled by symptomatic patients RT-qPCR tested for SARS-CoV-2 in a single university centre in March-September 2020. The population demonstrated balanced sex and age with 759 SARS-CoV-2( +) patients. The most discriminative symptoms in SARS-CoV-2( +) patients at early infection stage were loss of taste/smell (OR = 3.33, p < 0.0001), body temperature above 38℃ (OR = 1.67, p < 0.0001), muscle aches (OR = 1.30, p = 0.0242), headache (OR = 1.27, p = 0.0405), cough (OR = 1.26, p = 0.0477). Dyspnea was more often reported among SARS-CoV-2(-) (OR = 0.55, p < 0.0001). Cough and dyspnea were 3.5 times more frequent among SARS-CoV-2(-) (OR = 0.28, p < 0.0001). Co-occurrence of cough, muscle aches, headache, loss of taste/smell (OR = 4.72, p = 0.0015) appeared significant, although co-occurrence of two symptoms only, cough and loss of smell or taste, means OR = 2.49 (p < 0.0001). Temperature > 38℃ with cough was most frequent in men (20%), while loss of taste/smell with cough in women (17%). For younger people, taste/smell impairment is sufficient to characterise infection, whereas in older patients co-occurrence of fever and cough is necessary. The presented study objectifies the single symptoms and interactions significance in COVID-19 diagnoses and demonstrates diverse symptomatology in patient groups.


2017 ◽  
Vol 35 (30) ◽  
pp. 3417-3424 ◽  
Author(s):  
Rong Wang ◽  
Amer M. Zeidan ◽  
Stephanie Halene ◽  
Xiao Xu ◽  
Amy J. Davidoff ◽  
...  

Purpose Little is known about the patterns and predictors of the use of end-of-life health care among patients with acute myeloid leukemia (AML). End-of-life care is particularly relevant for older adults with AML because of their poor prognosis. Methods We performed a population-based, retrospective cohort study of patients with AML who were ≥ 66 years of age at diagnosis and diagnosed during the period from 1999 to 2011 and died before December 31, 2012. Medicare claims were used to assess patterns of hospice care and use of aggressive treatment. Predictors of these end points were evaluated using multivariable logistic regression analyses. Results In the overall cohort (N = 13,156), hospice care after AML diagnosis increased from 31.3% in 1999 to 56.4% in 2012, but the increase was primarily driven by late hospice enrollment that occurred in the last 7 days of life. Among the 5,847 patients who enrolled in hospice, 47.4% and 28.8% started their first hospice enrollment in the last 7 and 3 days of life, respectively. Among patients who transferred in and out of hospice care, 62% received transfusions outside hospice. Additionally, the use of chemotherapy within the last 14 days of life increased from 7.7% in 1999 to 18.8% in 2012. Patients who were male and nonwhite were less likely to enroll in hospice and more likely to receive chemotherapy or be admitted to intensive care units at the end of life. Conversely, older patients were less likely to receive chemotherapy or have intensive care unit admission at the end of life, and were more likely to enroll in hospice. Conclusion End-of-life care for older patients with AML is suboptimal. Additional research is warranted to identify reasons for their low use of hospice services and strategies to enhance end-of-life care for these patients.


2001 ◽  
Vol 8 (6) ◽  
pp. 533-543 ◽  
Author(s):  
Eun-Shim Nahm ◽  
Barbara Resnick

With the advancement of medical technology, various life-sustaining treatments are available at the end of life. Older adults should be encouraged to establish their end-of-life treatment preferences (ELTP) while they are physically and mentally able to do so. The purpose of this study was to explore ELTP among older adults and to compare those preferences in a subset of individuals who had reported their ELTP in a survey completed the previous year. This was a descriptive study of 191 older adults living in a continuing care retirement community. Approximately half of the participants did not want cardiopulmonary resuscitation, to be put on a respirator, or to receive dialysis. The findings in this study suggest that many older adults do not want aggressive interventions at the end of life, but choose rather those measures that will keep them comfortable. Moreover, treatment choices may change over time. Health care providers should initiate discussions about ELTP at regular intervals (yearly) to assist older adults in dictating their end-of-life care.


CJEM ◽  
2018 ◽  
Vol 20 (S1) ◽  
pp. S77-S77
Author(s):  
J. Gravel ◽  
M. deVries ◽  
D. Horn ◽  
S. McLeod ◽  
C. Varner

Introduction: Emergency department (ED) providers are frequently challenged with how best to treat acute pain in older patients, specifically when non-opioid analgesics are insufficient or contraindicated. Studies have documented older patients presenting to the ED with painful conditions are less likely to receive pain medications than younger patients, and this inadequate pain control has been associated with increased risk of delirium and longer hospital stays. As there are no guidelines informing best practice of analgesia in the older adult population, emergency physicians often report uncertainty regarding the ideal choice of opioid analgesic. The objective of this study was to compare the efficacy of opioid analgesics for acute pain in older adults (70 years) in the ED. Methods: Electronic searches of Medline, EMBASE, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and CINAHL were conducted and reference lists were hand-searched. Randomized controlled trials (RCTs) comparing the efficacy of 2 or more opioid analgesics for acute pain in older patients (70 years) in ambulatory settings (i.e., EDs, clinics) were included. Two reviewers independently screened abstracts, assessed quality of the studies, and extracted data. Results: After screening titles and abstracts of 1297 citations, the full-texts of 63 studies were reviewed, and 1 study met the inclusion criteria. This study allocated patients to receive either single dose of 0.0075-mg/kg IV hydromorphone versus 0.05-mg IV morphine and found no clinical or statistical difference between the two treatments in older adults presenting to an urban academic ED with acute, severe pain. Conclusion: The lack of published research in this area demonstrates a significant gap in the existing knowledge of the comparative efficacy of opioid analgesics in this growing patient population and that well-designed RCTs are urgently needed.


Healthcare ◽  
2020 ◽  
Vol 8 (3) ◽  
pp. 282
Author(s):  
Petra Čičak ◽  
Sanja Thompson ◽  
Sanja Popović-Grle ◽  
Vladimir Fijačko ◽  
Jasmina Lukinac ◽  
...  

Despite the progressive nature of chronic obstructive pulmonary disease (COPD), its association of high morbidity and mortality with severe COPD, and the view that discussions between patients and clinicians about palliative care plans should be grounded in patients’ preferences, many older patients do not receive timely end-of-life care (EOLC) discussions with healthcare professionals (HPs), potentially risking inadequate care at the advanced stages of the disease. The aim of this pilot study was to evaluate EOLC discussions and resuscitation issues as a representative and illustrative part within EOLC in older patients with COPD in the University Hospital Center Osijek, Slavonia (Eastern Region), Croatia, as such data have not yet been explored. The study was designed as cross-sectional research. Two groups of participants, namely, patients at least 65 years old with COPD and healthcare professionals, were interviewed anonymously. In total, 83 participants (22 HPs and 61 patients with COPD) were included in the study. According to the results, 77% of patients reported that they had not had EOLC discussions with HPs, 64% expressed the opinion that they would like such conversations, and the best timing for such discussion would be during frequent hospital admissions. Furthermore, 77% of HPs thought that EOLC communication is important, but only 14% actually discussed such issues with their patients because most of them felt uncomfortable starting such a topic. The majority of older patients with COPD did not discuss advanced care planning with their HPs, even though the majority of them would like to have such a discussion. EOLC between HPs and older patients with COPD should be encouraged in line with patients’ wishes, with the aim to improve their quality of care by anticipating patients’ likely future needs in a timely manner and thereby providing proactive support in accordance with patients’ preferences.


2021 ◽  
Vol 12 ◽  
pp. 204209862110193
Author(s):  
Shakti Shrestha ◽  
Roshan Giri ◽  
Hari Prasad Sapkota ◽  
Siddhartha Sharma Danai ◽  
Ahsan Saleem ◽  
...  

Introduction: Older adults continue to receive potentially inappropriate medications necessitating the need for medication optimization, by deprescribing. To ensure a holistic approach to deprescribing, it is essential to understand the perception of older adults towards deprescribing. This study aimed to assess the attitude of older ambulatory patients towards deprescribing and to identify factors predicting their willingness to deprescribe. Methods: A cross-sectional survey was conducted in central Nepal between March and September 2019 among 385 older ambulatory care patients (aged ⩾65 years) who were taking at least one regular medicine. The perception of patients towards deprescribing was assessed using the revised Patients’ Attitudes Towards Deprescribing (rPATD) questionnaire via a face-to-face interview method. Descriptive statistics were performed to describe patients’ characteristics and their attitudes towards deprescribing. A multivariate logistic regression analysis was used to determine predictors of the willingness of older ambulatory patients towards deprescribing. Results: The median [interquartile range (IQR)] age of patients was 72 (8) years. Nearly three in five patients (64.9%) had hypertension, with 11.2% having polypharmacy. More than half of the patients (57.4%) would be willing to stop one or more of their regular medicines if their doctor said it was possible to do so. Regression analysis showed that age [odds ratio (OR) 0.946; 95% CI 0.913, 0.981; p = 0.003] and concerns about stopping medicine score (OR 0.541; 95% CI 0.334, 0.876; p = 0.013) were predictors of the willingness of the older patients towards deprescribing. Conclusion: One in two older ambulatory care patients in Nepal would be willing to have one or more of their medicines deprescribed. The factors predicting their willingness to deprescribe are their age and concerns about stopping medicines. Clinicians should consider discussing the possibility of deprescribing with older patients for the prevention of potential medication-related harms. Plain Language Summary What do older Nepalese patients think about withdrawal or dose reduction of an inappropriate medication? Introduction: Research suggests that older adults (aged ⩾65 years) continue to receive medications that have the potential for harm rather than a benefit. This necessitates the need for withdrawal or dose reduction of such inappropriate medications, the process known as deprescribing. Understanding what older patients think about this process could be a stepping-stone to the general approach for its implementation. Data on deprescribing is lacking from Nepal. Therefore, we designed a survey to explore the attitude of older patients towards deprescribing and factors that could predict their willingness to deprescribe. Methods: This study was conducted between March to September 2019 among 385 older patients who were taking at least one regular medicine and were visiting selected hospitals of Nepal for outpatient services. We performed a face-to-face interview to assess the attitude of patients towards deprescribing using a validated tool called revised Patients’ Attitudes Towards Deprescribing (rPATD) questionnaire that quantified the response through scoring. The data were subjected to statistical analysis to determine the attitudes of Nepalese older patients towards deprescribing and to develop a model to predict their willingness to deprescribe. Results: The average age of the participant was 72 years with 65% having hypertension and 11% using more than five medications. Our data suggested that one in two older Nepalese patients would be willing to stop one or more of their regular medications if their doctors said it was possible to do so. Their willingness to deprescribe could be predicted from their age and concerns about stopping medications. Conclusion: Clinicians should consider discussing the possibility of deprescribing with older patients for the prevention of potential medication-related harms.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11546-11546
Author(s):  
Erin Moth ◽  
Belinda Emma Kiely ◽  
Andrew James Martin ◽  
Vasi Naganathan ◽  
Stephen A. Della-Fiorentina ◽  
...  

11546 Background: We sought older adults’ preferred and perceived roles in decision-making about palliative chemotherapy; their decision-making priorities; and information received and desired. Methods: Patients aged ≥65 years with incurable cancer who had discussed palliative chemotherapy with an oncologist and made a decision about whether or not to receive palliative chemotherapy were invited to complete a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale (CPS). Associations with preferred decision-making role were examined using Wilcoxon rank sum tests. Factors important in making a decision about chemotherapy, and receipt of and desire for information were described. Results: The 179 respondents had a median age of 74 years (range 65 to 92 years). Most were male (114, 64%) and had chosen to receive chemotherapy (148, 83%). Half (92, 52%) were vulnerable by the Vulnerable Elders Survey-13 (score ≥3). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36%, and matched the preferred role for 63% of patients. Preference for an active role was associated with being single/widowed (p = 0.004, OR 1.49) and declining chemotherapy (p = 0.02, OR 2). Factors ranked most important when making a decision about chemotherapy (n = 159) were “doing everything possible” (30%), “my doctor’s recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy, though fewer had received quantitative prognostic information (49%) than desired this (67%). Conclusions: Older adults showed varied preferences for involvement in decision-making about palliative chemotherapy, and most played the role that they preferred. To facilitate shared decision-making, oncologists should seek patients’ decision-making preferences, priorities and information needs when discussing palliative chemotherapy.


Healthcare ◽  
2020 ◽  
Vol 8 (1) ◽  
pp. 38 ◽  
Author(s):  
Blanka Klimova ◽  
Petra Maresova ◽  
Sunwoo Lee

This current study was sought to explore how older adults’ adaptation of information and communication technology (ICT) devices was associated with their preference for e-Health services. A total of 224 Czech older adults aged 60+ were analyzed for the study. The sample comprised 21% male and 79% female. A self-reported survey questionnaire was employed to assess the prevalence of the use of ICT devices and the Internet and general preference for e-Health services. A series of t-tests were performed between and within two groups divided into e-Health supporters and non-supporters. The results indicated that nearly half of the respondents preferred to use the Internet for searching for health-related information. We found that older adults’ use of ICT devices and educational level was significantly associated with the selection of the e-Health services. However, gender, household type, and the place for a residence did not count additional variance for the preferred e-Health services. For those who express willingness to receive the e-Health service, the preferred e-Health services should be implemented across relevant health domains. To do so, health professionals ought to provide the necessary equipment and educational programs that help older adults better access and adapt to e-Health services.


2020 ◽  
Vol 10 (1) ◽  
pp. 91
Author(s):  
Ana I. González-González ◽  
Christine Schmucker ◽  
Julia Nothacker ◽  
Edris Nury ◽  
Truc Sophia Dinh ◽  
...  

Unpredictable disease trajectories make early clarification of end-of-life (EoL) care preferences in older patients with multimorbidity advisable. This mixed methods systematic review synthesizes studies and assesses such preferences. Two independent reviewers screened title/abstracts/full texts in seven databases, extracted data and used the Mixed Methods Appraisal Tool to assess risk of bias (RoB). We synthesized findings from 22 studies (3243 patients) narratively and, where possible, quantitatively. Nineteen studies assessed willingness to receive life-sustaining treatments (LSTs), six, the preferred place of care, and eight, preferences regarding shared decision-making processes. When unspecified, 21% of patients in four studies preferred any LST option. In three studies, fewer patients chose LST when faced with death and deteriorating health, and more when treatment promised life extension. In 13 studies, 67% and 48% of patients respectively were willing to receive cardiopulmonary resuscitation and mechanical ventilation, but willingness decreased with deteriorating health. Further, 52% of patients from three studies wished to die at home. Seven studies showed that unless incapacitated, most patients prefer to decide on their EoL care themselves. High non-response rates meant RoB was high in most studies. Knowledge of EoL care preferences of older patients with multimorbidity increases the chance such care will be provided.


Crisis ◽  
2010 ◽  
Vol 31 (2) ◽  
pp. 109-112 ◽  
Author(s):  
Hui Chen ◽  
Brian L. Mishara ◽  
Xiao Xian Liu

Background: In China, where follow-up with hospitalized attempters is generally lacking, there is a great need for inexpensive and effective means of maintaining contact and decreasing recidivism. Aims: Our objective was to test whether mobile telephone message contacts after discharge would be feasible and acceptable to suicide attempters in China. Methods: Fifteen participants were recruited from suicide attempters seen in the Emergency Department in Wuhan, China, to participate in a pilot study to receive mobile telephone messages after discharge. All participants have access to a mobile telephone, and there is no charge for the user to receive text messages. Results: Most participants (12) considered the text message contacts an acceptable and useful form of help and would like to continue to receive them for a longer period of time. Conclusions: This suggests that, as a low-cost and quick method of intervention in areas where more intensive follow-up is not practical or available, telephone messages contacts are accessible, feasible, and acceptable to suicide attempters. We hope that this will inspire future research on regular and long-term message interventions to prevent recidivism in suicide attempters.


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