Patient perspectives on states worse than death: A qualitative study with implications for patient-centered outcomes and values elicitation

Background: Seriously ill patients rate several health outcomes as states worse than death. It is unclear what factors underlie such valuations, and whether consideration of such states is useful when making medical decisions. Aim: We sought to (1) use qualitative approaches to identify states worse than death, (2) identify attributes common to such undesirable health states, and (3) determine how participants might use information on these states in making medical decisions. Design: Qualitative study of semi-structured interviews utilizing content analysis with constant comparison techniques. Setting, Participants: We interviewed adults age 65 or older with serious illnesses after discharge home from one of two urban, academic hospitals. Eligible patients were purposively sampled to achieve balance in gender and race. Results: Of 29 participants, 15 (52%) were female, and 15 were white (52%), with a median age of 72 (interquartile range 69, 75). Various physical, cognitive, and social impairments were identified as states worse than death. The most commonly reported attributes underlying states worse than death were perceived burden on loved ones and inability to maintain human connection. Patients believed information on states worse than death must be individualized, and were concerned their opinions could change with time and fluctuations in health status. Conclusions: Common factors underlying undesirable states suggest that for care to be patient-centered it must also be family-centered. Patients’ views on using states worse than death in decision making highlight barriers to using avoidance of such states as a quality measure, but also suggest opportunities for eliciting patients’ values.

Effect of COVID-19 Infection in the Patients with Diabetes Mellitus

Background: Coronavirus is pandemic virus infection which has recently affected the globe, and as a result, in patients with non-communicable diseases, the associated morbidity and death are substantially greater. One of the most common non-communicable diseases linked to worsening clinical conditions in corona virus patients is diabetes mellitus (dm). Covid-19 is a zoonotic illness that was firstly found in wuhan city of china, and is now recognized a zoonotic disease that spreads from moist animals to people in 2019. The disease has a low fatality rate and only affects the most seriously ill patients. Approximately 80% of the cases involve patients who are seriously to moderately ill. Since the outbreak of the disease, the number of people who have died has continuously increased. Summary: The aim for this study is to determine the receptors involved in diabetes and the pathogenetic relationship btw. Covid-19 and diabetes. Both diseases are characterized by inflammation and the release of inflammatory markers. The roles of angiotensin-converting enzyme molecule and dipeptidyl peptidase in covid-19 and diabetes have been investigated. The effects of glucocorticoids and catecholamines, invasion of pancreatic islet cells, medications used to treat covid-19, and hence the lockdown policy, may have a deleterious impact on diabetes patients' glucose control. The results of covid-19 research involving diabetic and non-diabetic patients were also examined. Various medication trials, such as the dapagliflozin and linagliptin trials are still being conducted to see if certain medications are suitable for diabetic people with covid-19. Conclusion: Diabetes is a risk factor for covid-19 patients, according to the data, leading to their severity and mortality. This article also contains guidelines and recommendations that may be useful in the management and avoidance of diabetic individuals who are infected with covid-19.

Patient–physician conversations about life-sustaining treatment: Treatment preferences and participant assessments

Objective In 2019, the Danish parliament issued legislation requiring Danish physicians to clarify and honor seriously ill patients’ treatment preferences. The American POLST (Physician Orders for Life-Sustaining Treatment) document could be a valuable model for this process. The aim of the study was to examine patients' preferences for life-sustaining treatment and participant assessment of a Danish POLST form. Methods The study is a prospective intervention based on a pilot-tested Danish POLST form. Participant assessments were examined using questionnaire surveys. Patients with serious illness and/or frailty from seven hospital wards, two general practitioners, and four nursing homes were included. The patients and their physicians completed the POLST form based on a process of shared decision-making. Results A total of 95 patients (aged 41–95) participated. Hereof, 88% declined cardiopulmonary resuscitation, 83% preferred limited medical interventions or comfort care, and 74% did not require artificial nutrition. The preferences were similar within age groups, genders, and locations, but with a tendency toward younger patients being more in favor of full treatment and nursing home residents being more in favor of cardiopulmonary resuscitation. Questionnaire response rates were 69% (66/95) for patients, 79% (22/28) for physicians, and 31% (9/29) for nurses. Hereof, the majority of patients, physicians, and nurses found that the POLST form was usable for conversations and decision-making about life-sustaining treatment to either a high or very high degree. Significance of results The majority of seriously ill patients did not want a resuscitation attempt and opted for selected treatments. The majority of participants found that the Danish POLST was usable for conversations and decisions about life-sustaining treatment to either a high or a very high degree, and that the POLST form facilitated an opportunity to openly discuss life-sustaining treatment.

Patient Portal Use Near the End-of-Life

Use of patient portals, personal health information websites linked to electronic health records, in seriously ill populations is unknown, as is use by caregivers. We described portal use patterns among adults with serious illness nearing end-of-life and their caregivers within Kaiser Permanente Colorado. Inclusion criteria were: 1) seriously ill patients (defined by KP’s “Care Group”), □18 years of age, who were registered for the portal, and died between 1/1/2016-6/30/2019; and 2) caregivers of these patients, □18 years of age, registered for a proxy account. Data included user characteristics and portal use metrics summarized monthly over the 12-month period prior to death. Models included an unadjusted linear trend of the days used by month using a generalized estimating equation Poisson model with a log link and an autoregressive correlation structure of order 1. We identified 6,517 seriously ill patients with portal registrations; 163 of these patients had proxy caregivers. Patient users were 77 years old, mostly frail and White, and caregivers were predominantly female. Average days of use among patients was 42.4 days and <1 day among their caregivers. Number of days used significantly increased by 0.7% per month from twelve months to one month prior to death (95% CI: 0.4%-1.0%; p-value <.0001) and peaked 3 months prior to the patient’s death. Average use was high in comparison to previous portal research and suggests that as the patient approaches death portal use increases. Future research should explore how portals may serve as indicators for identifying and addressing end-of-life care needs.

Qualitative Document Analysis of Patient’s Healthcare Trajectory With and Without Palliative Care

Palliative care is important to the care of seriously ill patients to support the patient and family. Palliative care is often timely in the inpatient setting, but delayed in outpatient care, leading to missed opportunities. Identifying when to engage patients with palliative care in outpatient settings has been challenging. As part of a larger quality improvement project to increase access to palliative care, a qualitative sub-study was completed to identify missed palliative care engagement opportunities in patient’s healthcare trajectories. A document analysis of patients notes from a convenience sample of 20 recently deceased patients who received care within the Veteran Affairs healthcare system (VAHCS) was completed. Patients were sorted into four categories that emerged from initial analysis: cancer/palliative, non-cancer/palliative, cancer/non-palliative, and non-cancer/non-palliative. Two qualitative analysts reviewed the notes, paying particular attention to notes preceding or following seminal healthcare events. Patients in the cancer/non-palliative category were more likely to decline preventive care, engage less with the VAHCS health care or only interacted with the VAHCS for specific needs (e.g., determine VA health benefits). Similarly, non-cancer/non-palliative care patients were more likely to use a mix of VAHCS and outside healthcare, with inpatient care occurring outside of the VAHCS. For non-palliative care patients, seminal healthcare events were less likely to occur in the VAHCS. Thus, identifying opportunities to engage patients with palliative outside of seminal healthcare events may be important to increasing patient access within the VAHCS.

Reluctance to Accept Palliative Care and Recommendations for Improvement

Although insurance companies are increasingly paying for home-based palliative care (HBPC), enrollment remains low. To identify patient and caregiver perceived barriers to HBPC and their recommendations for overcoming these barriers, we conducted semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on HBPC services; positive and negative aspects of the palliative program explanation; and suggestions for improving HBPC messaging. Seventeen patients and eight caregivers who were eligible for a randomized controlled trial of HBPC were interviewed. Themes related to HBPC referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that HBPC referrals come from healthcare providers or insurance companies and presenting HBPC more clearly. Findings reinforce the need for palliative care education among seriously ill patients and the importance of delivering palliative care information and referrals from trusted sources.

Explaining Gender Differences in Depressive Symptoms Among Caregivers of Older Patients With Critical Illness

The aging of baby boomers makes caring for the elderly an increasingly important topic. As rising cost of health care, the care for seriously ill patients has gradually shifted from hospitals to families, particularly in the countryside. Along with growing demand for informal care, informal caregivers are at increased risk of depression. The aim of this study was to explore the potential protective factors or risk factors associated with depressive symptoms of caregivers for patients with critical illness (45 to 93 years of age) across gender groups, explain their different pathways of influence, and elucidate targeted measures to improve their outcomes (N=518). Results from the statistical model showed that the paths of effect from care needs to caregiver depressive symptoms differed between male and female informal caregivers. Care needs were not significantly associated with depression symptoms among informal caregivers, for either men or women. Care hours of more than 12 hours per day and financial difficulties at home are risk factors for depressive symptoms in caregivers, with significance of OR=3.42; 95%CI,1.97 to 5.94; P=0.000 and OR=2.98; 95%CI, 1.46 to 6.05; p=0.003, respectively. For male caregivers, years of caregiver education and the feel relied upon by relative's were both protective factors, whereas Job-Caregiving conflict, was a risk factor (P<0.05). For female caregivers, caregiver burden and higher caregiver age were its risk factors (P<0.05). These important findings demonstrate that to be effective in reducing depressive symptoms among informal caregivers, both cointerventions and triage interventions by gender are warranted.

Factors of feasibility: an interview study of physicians’ experiences of expanded access to investigational drugs in three countries

Seriously ill patients who have exhausted all approved treatment regimens and who cannot be enrolled in clinical trials may resort to expanded access programmes in order to gain access to unapproved, investigational drugs. It seems that in some countries, expanded access to investigational drugs is offered in clinical practice on a more routine basis than in other countries. This study is the first to investigate the experiences of physicians with expanded access to investigational drugs in different healthcare systems, with a focus on factors that facilitate or hinder expanded access. Semi-structured interviews (n = 36) were carried out with medical specialists in the Netherlands (n = 14), Turkey (n = 9) and the United States of America (n = 13), and analysed thematically. This study identifies five sets of factors pointed out by physicians that determine the degree to which expanded access to investigational drugs is deemed feasible in clinical practice: the suitability of investigational treatments, the application process, hospital policies, support by pharmaceutical companies, and funding and reimbursement arrangements. Based on the interviews conducted, we conclude that, while legally allowed and technically possible, expanded access is not always feasible for—and not always considered an option by—treating physicians. This is mainly due to lack of familiarity with expanded access, the extensive time and effort required for the application process, willingness or ability of pharmaceutical companies to supply the drugs, and funding issues.

Patient and physician perspectives on engaging in palliative and healthcare trials: a qualitative descriptive study

Background Researchers are encountering increasing challenges in recruiting participants for palliative and healthcare research. This paper aims to understand challenges to and methods for engaging physicians and seriously ill patients and their caregivers in research studies. Methods Between October 2019 to July 2020, we conducted qualitative interviews with 25 patients, proxies, and caregivers participants who were eligible for a randomized controlled trial of home-based palliative care and 31 physicians from participating accountable care organizations. Using thematic analysis, we analyzed participants’ responses to identify concepts and key ideas within the text. From these initial concepts, core themes around barriers to research and preferred research recruitment approaches were generated. Results Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers’ offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events. Conclusions Findings demonstrated that although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a consistent barrier to research involvement.