End-of-life Medical Care Research Articles

Knowledge gaps, attitudes, and practices regarding end-of-life medical care among physicians in an academic medical center

<b>Introduction:</b> End-of-life medical care (ELMC) plans and do-not-resuscitate (DNR) decision-making are usually affected by multiple factors compared to other medical care decisions.<b> </b>ELMC and DNR policy implementation are still diversified and heterogeneous, especially in Saudi Arabia, because policymakers have adopted no guidelines. Thus, this study investigated physicians’ knowledge, attitude, and practice regarding ELMC and DNR.<br /> <b>Methods:</b> A cross-sectional study design was adopted. Three hundred physicians working at King Fahad Hospital of the University, Khobar, Saudi Arabia, were randomly selected and administered an anonymous self-administered questionnaire using the Likert scale. Data analysis was carried out using SPSS 23.0.<br /> <b>Results: </b>Of 300 distributed questionnaires, 264 (88%) were completed and analysed. Knowledge gaps and negative attitudes were observed, a quarter of the participants were opposed to issuing a DNR order, and 29.0% considered DNR as equal to euthanasia as they practice. The participants’ patient age and religious factors were the most critical factors in the ELMC plan and DNR decision. The physician’s level of acceptance regarding a set of ELMC interventions and DNR decisions showed heterogenicity and uncertainty among participants.<br /> <b>Conclusions:</b> The ELMC plan and DNR decision-making should be appropriately addressed in the medical residents’ training programs to bridge the knowledge gap and the physicians’ negative attitudes during their practice. Additionally, there is a need to update and unify the DNR policies at the national level, considering the patient’s right to be informed and involved actively during the decision process making. Finally, more prospective research is needed for the global standardization of ELMC.

Advance care planning (ACP) to promote receipt of value-concordant care: Results vary according to patient priorities.

Benefits of advance care planning (ACP) have recently been questioned by experts, but ACP is comprised of discrete activities. Little is known about which, if any, ACP activities are associated with patients' greater likelihood of receiving value-concordant end-of-life (EoL) care. To determine which ACP activities [Do-Not-Resuscitate (DNR) order completion, designation of a healthcare proxy (HCP), and/or EoL discussions with physicians], individually and in combination, are associated with the greatest likelihood of receiving value-concordant care, and how results may vary based on patient-reported EoL care priorities. Data from 2 federally-funded, multisite, prospective cohort studies of EoL cancer care from 2002-2019 were analyzed. Cancer patients (N = 278) with metastatic disease refractory to chemotherapy were interviewed for a baseline assessment and followed prospectively until death. Interviews regarding patient priorities occurred a median of 111 days prior to death; data regarding EoL medical care were collected post-mortem from caregiver interviews and medical record abstraction. Patients who 1) prioritized life-extending care, and then received life-extending care (or avoided hospice care), or 2) prioritized comfort-focused care, and then avoided life-extending care (or received hospice care) in the last week of life, were coded as receiving value-concordant care. After inverse propensity score weighting, the ACP combination associated with the largest proportion of patients receiving value-concordant care was DNR, HCP, and EoL discussions (87% vs. 64% for no ACP activities; OR = 3.91, p = 0.006). In weighted analyses examining each ACP activity individually, DNR orders were associated with decreased likelihood of life-extending care (89% vs. 75%; p = 0.005) and EoL discussions were associated with increased likelihood of hospice care (77% vs. 55%; p = 0.002) among patients prioritizing comfort. ACP activities were not significantly associated with increased likelihood of receiving value-concordant care among patients prioritizing life-extension. For patients who prioritize comfort, EoL discussions with physicians and completion of DNR orders may improve odds of receiving value-concordant EoL care. For patients who prioritize life-extension, ACP does not appear to improve odds of receiving value-concordant EoL care.

INDIVIDUALS' KNOWLEDGE ABOUT A LOVED ONE’S END-OF-LIFE CARE WISHES IS ASSOCIATED WITH THEIR OWN ADVANCE CARE PLANNING

Abstract Despite evidence that ACP can improve quality of life for both patient and family, it remains underutilized. Only 37% US adults have a complete advance directive (Kuldeep et al., 2017). Existing studies primarily examined factors associated with patients’ ACP engagement but very few explored ACP among patients’ family. The goal of this study is to examine whether individuals’ knowledge about a loved one’s end-of-life (EOL) care preferences is associated with their ACP engagement. Data are from the US arm of the 2015 Four-Country Survey on Aging and End-of-Life Medical Care. The sample included N=609 adults who experienced the death of a family or close friend in the past 5 years.Three binary dependent variables were measured by different facets of ACP: having a serious conversation about EOL medical care wishes (1) with loved ones, (2) with doctors and (3) documenting those wishes. The primary independent variable was participants’ knowledge about their deceased family’s EOL treatment wishes.Three separate logistic regression models were used. Individuals who had a greater knowledge about their loved one’s EOL treatment wishes were twice as likely to have a conversation with family about their own EOL wishes (OR=2.32, P< 0.001) and documented wishes than those who didn’t(OR=2.03, P< 0.05). Results have direct implications for clinicians who work with families in EOL care settings. They may have opportunities to engage individuals – other than patients – in ACP. Focusing the experience of involvement in a loved one’s EOL care may be an effective strategy to enhance ACP engagement.

Knowledge, awareness, and attitude of health professions student's towards end-of-life patient care

Objectives: Provision of ethical medical care is the totem pole of the health-care system and to make appropriate decisions while providing the end-of-life (EOL) care is essential for all physicians. The aim of this study was to assess the knowledge, awareness, and attitude of health professions students (HPSs) about the bioethics of EOL medical care. Methodology: This cross-sectional study was carried out in all colleges of our University for Health Sciences, Jeddah Campus from September 2019 to December 2019. A predesigned and validated questionnaire about end of life patient care was adopted to achieve the purpose of the study. Results: A total of 522 students responded to this survey, of them, 290 (55.6%) were male, while 232 (44.4%) were female with a ratio of 1:1.25. Also, 226 (43.3%) of the respondents were from College of Medicine (COM), 142 (27.2%) from College of Health Professions (COSHP), 86 (16.5%) from College of Applied Medical Sciences (CAMS), and 68 (13.0%) from College of Nursing (CON). 44.9% of the males and 52.6% of females had a disagreement with the statement that patient has the right to end his or her own life of which 24.8% of COM, 27.9% of CAMS, 35.3% of CON, and 26.85% of COSHP strongly disagreed (P Conclusions: The awareness about the bioethical concepts of EOL care was good among the HPSs of KSAU-HS, however this study identifies a need of introducing the bioethical concepts of palliative care in the curriculum.

EP19.02: Red herrings in gynecology: a cautionary tale

We present a case where a non-gynecological malignancy was missed due to a large pelvic mass which was thought to account for the patient's symptoms. Mrs X was referred due to a large palpable mass which on ultrasound appeared to be arising from her bladder. On questioning, she had abdominal discomfort, weight loss and dysphagia as well as urinary incontinence. An MRI scan of her abdomen and pelvis was requested, however as it was apparent that her mass was a large 15cm left ovarian cyst, and the abdominal MRI was not performed. Her case was discussed at a gynecological oncology MDT and a laparoscopic bilateral salpingo-oophrectomy was performed. Her surgery was uncomplicated, and histology showed a benign serous cystadenoma. Despite the removal of her cysts, she continued to have dysphagia, and a referral to general surgery was done. She was assessed and an endoscopy was performed with benign findings. Days after her endoscopy results, Mrs X collapsed at home and passed away shortly after. A post mortem revealed that Mrs X died due to an internal bleed caused by metastatic pancreatic cancer. Her large ovarian cyst had falsely reassured her clinicians that she did not have a malignancy. As a result, Mrs X and her family were oblivious to her terminal condition and she was denied end of life medical care. It is important to keep confounders in mind when the investigations, and clinical picture do not correlate. Supporting information can be found in the online version of this abstract Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.

Failure of the Current Advance Care Planning Paradigm: Advocating for a Communications-Based Approach.

The purpose of advance care planning (ACP) is to allow an individual to maintain autonomy in end-of-life (EOL) medical decision-making even when incapacitated by disease or terminal illness. The intersection of EOL medical technology, ethics of EOL care, and state and federal law has driven the development of the legal framework for advance directives (ADs). However, from an ethical perspective the current legal framework is inadequate to make ADs an effective EOL planning tool. One response to this flawed AD process has been the development of Physician Orders for Life Sustaining Treatment (POLST). POLST has been described as a paradigm shift to address the inadequacies of ADs. However, POLST has failed to bridge the gap between patients and their autonomous, preferred EOL care decisions. Analysis of ADs and POLST reveals that future policy should focus on a communications-based approach to ACP that emphasizes ongoing interactions between healthcare providers and patients to optimize EOL medical care to the individual patient.

Clergy religious beliefs and ICU utilization at the end of life.

223 Background: High religious community spiritual support is associated with greater aggressive interventions at the end of life (EOL). At EOL, half of U.S. patients are visited by clergy. The relationship of clergy religious beliefs about EOL care to dying congregants’ EOL medical decisions is unknown. Methods: This is an NCI-funded study of 1,665 U.S. clergy randomly-selected from a comprehensive database of 368,408 U.S. congregations and administered a survey 8/2014-2/2015; 1,005 responded (60%). Clergy reported endorsement of religious beliefs about congregants’ EOL care (RBEC), including miracles, sanctity of life, divine sovereignty, and redemptive suffering. Clergy reported on their last experience in spiritual caregiving to a dying congregant, including congregant’s care location in the final week. The primary outcome was any ICU care in the final week of life. Multivariable analyses (MVA), controlling for clergy age, gender, race, region, and congregational income, assessed the relationship of clergy RBEC to any congregant ICU care in the last week. Results: Most (86%) clergy affirmed belief in a miraculous cure; 54% agreed that the congregant should accept every medical treatment out of religious obligations. A minority of clergy affirmed that belief in divine sovereignty relieved congregants of future medical decisions (28%) and that they should endure medical procedures because suffering is God’s test (27%). In MVA, higher RBEC scores were associated with a greater likelihood of any ICU utilization in the last week (AOR=1.28, p=.02), with belief in divine sovereignty being the strongest predictor (AOR 2.1, p=.005). Predictors of having greater RBEC scores included being Hispanic (AOR=3.35, p<.001) or black (AOR=3.0, p<.001), as compared to white, and being Pentecostal (AOR=3.54, p<.001) or Evangelical (AOR=2.12, p<.001) as compared to clergy self-identified as liberal. Conclusions: A majority of clergy endorse religious beliefs regarding their dying congregants’ EOL medical care; these beliefs are associated with greater ICU care in the final days of life for congregants. Future research is needed to determine religiously-consistent approaches to clergy EOL education to mitigate aggressive interventions at the EOL.

Future Time Perspective and End-of-Life Planning in Older Adults.

This study explores the extent to which cognitive processes, specifically perceptions of one's distance to death, are associated with informal and formal advance care planning (ACP) in a sample of older adults. Data come from the New Jersey End-of-Life (EOL) study, a survey of 305 adults aged 55-91. Binary logistic regression models evaluate the odds that someone conducted ACP. Persons who perceive remaining life span to be expansive or limited have significantly lower odds of formally planning for the EOL, relative to those in the middle category. Death anxiety and having a family confidante partially explain these associations. The association between future time perspective (FTP) and discussions is not statistically significant. Practitioners may consider individuals' FTPs when discussing preferences for EOL medical care.

Provision of Spiritual Support to Patients With Advanced Cancer by Religious Communities and Associations With Medical Care at the End of Life

Previous studies report associations between medical utilization at the end-of-life (EoL) and religious coping and spiritual support from the medical team. However, the influence of clergy and religious communities on EoL outcomes is unclear. To determine whether spiritual support from religious communities influences terminally ill patients' medical care and quality of life (QoL) near death. A US-based, multisite cohort study of 343 patients with advanced cancer enrolled from September 2002 through August 2008 and followed up (median duration, 116 days) until death. Baseline interviews assessed support of patients' spiritual needs by religious communities. End-of-life medical care in the final week included the following: hospice, aggressive EoL measures (care in an intensive care unit [ICU], resuscitation, or ventilation), and ICU death. End-of-life QoL was assessed by caregiver ratings of patient QoL in the last week of life. Multivariable regression analyses were performed on EoL care outcomes in relation to religious community spiritual support, controlling for confounding variables, and were repeated among high religious coping and racial/ethnic minority patients. Patients reporting high spiritual support from religious communities (43%) were less likely to receive hospice (adjusted odds ratio [AOR], 0.37; 95% CI, 0.20-0.70 [P = .002]), more likely to receive aggressive EoL measures (AOR, 2.62; 95% CI, 1.14-6.06 [P = .02]), and more likely to die in an ICU (AOR, 5.22; 95% CI, 1.71-15.60 [P = .004]). Risks of receiving aggressive EoL interventions and ICU deaths were greater among high religious coping (AOR, 11.02; 95% CI, 2.83-42.89 [P < .001]; and AOR, 22.02; 95% CI, 3.24-149.58 [P = .002]; respectively) and racial/ethnic minority patients (AOR, 8.03; 95% CI, 2.04-31.55 [P = .003]; and AOR, 11.21; 95% CI, 2.29-54.88 [P = .003]; respectively). Among patients well-supported by religious communities, receiving spiritual support from the medical team was associated with higher rates of hospice use (AOR, 2.37; 95% CI, 1.03-5.44 [P = .04]), fewer aggressive interventions (AOR, 0.23; 95% CI, 0.06-0.79 [P = .02]) and fewer ICU deaths (AOR, 0.19; 95% CI, 0.05-0.80 [P = .02]); and EoL discussions were associated with fewer aggressive interventions (AOR, 0.12; 95% CI, 0.02-0.63 [P = .01]). Terminally ill patients who are well supported by religious communities access hospice care less and aggressive medical interventions more near death. Spiritual care and EoL discussions by the medical team may reduce aggressive treatment, highlighting spiritual care as a key component of EoL medical care guidelines.

ASSESSING PATIENT VALUES FIRST: CREATING A PLATFORM FOR ADVANCE CARE PLANNING (ACP) IN THE ADULT ONCOLOGY POPULATION

BackgroundPatients, families and health care providers can be apprehensive about having end-of-life (EOL) conversations in Oncology. However, asking patients about personal values regarding their healthcare goals creates a platform for...

Consenso informato. Una riflessione filosofico-giuridica sul tema

The paper frames the issue from the philosophy of law's viewpoint to determine the current "state of health" of informed consent starting from some critical areas (like the physician-patient relationship, illnesses with poor prognosis and the endof life medical care, genetics, clinical research and practice) and from its legal sources (like judicial decisions). The author's claim is that informed consent does not need to be weakened in this historical period in order to strenghten solidarity and trust to achieve common goals for all human beings. Instead, she aims at proving that trust and solidarity should be placed in a participatory and cooperative scenario which should be fed by the respect, at the highest levels, of individual self-determination, and therefore of informed consent.

Personalized end-of-life care: Associations between patient preferences and treatment intensity near death

6516 Background: Medical treatment at the end-of-life (EOL) should be responsive to patient values, but research shows it may instead reflect the regional supply of health services and/or physician practice patterns. We sought to determine whether patients' preferences are associated with EOL medical care and place of death. Methods: Coping with Cancer is an NCI/NIMH-funded, multi-site prospective, longitudinal cohort study of patients with advanced cancer, conducted from September 2002-February 2008. Analyses were based upon 317 deceased patients interviewed at baseline and followed until death, a median of 4.4 months later. EOL care was obtained from chart review, and regressed on patients' baseline preferences for life-extending therapy. Analyses were adjusted for significant confounds; i.e., socio-demographics, cancer type, patient denial, EOL discussion, do-not resuscitate (DNR) order, and treatment center. A sub-analysis examined EOL care within three different medical centers to determine whether patients' preferences and treatment intensity varied by region/practice type. Results: 90 of 317 patients (28.4%) reported a desire to receive life-extending therapy at baseline. Patients' preferences did not differ by proximity to death or performance status, but patients who preferred life-extending therapy had higher rates of denial (75.0% vs. 55.6%, p = 0.002) and were less likely to report having an EOL conversation (24.4% vs. 48.9%, p = 0.0002) or a DNR order (24.4% vs. 48.9%, p &lt; 0.0001). These patients were more likely to undergo ICU admission (AOR 4.6, 95% CI 1.9–11.1) and ventilation (AOR 3.0, 95% CI 1.2–7.3), and die in an ICU (AOR 6.7, 95% CI 2.4–18.7) instead of at home (AOR 0.6, 95% CI 0.3–0.9). A sub-analysis of patients treated at Yale, Parkland, and New Hampshire Oncology-Hematology confirmed that patients' preference for life-extending treatment was associated with higher rates of ICU admission in all three centers. Conclusions: Advanced cancer patients' treatment preferences may play a more important role in determining the intensity of medical care at the EOL than previously recognized. Future research should determine whether these preferences are informed and thus reflect patients' true values for EOL care. No significant financial relationships to disclose.

Organ donation, patients’ rights, and medical responsibilities at the end of life*

The 2006 revision of the Uniform Anatomical Gift Act (UAGA) attempts to enhance the availability of organs in part by granting new authority to organ procurement organizations over patients who are near death and may be candidates for donation after death while limiting patients' end of life (EOL) decisional authority through advance directives or surrogates. To examine the revised UAGA that may alter the ethics and law of EOL medical care in the United States. To analyze the revised UAGA in light of established legal and ethical standards. We evaluated the 2006 UAGA and accompanying commentary. Case law and ethics literature regarding informed consent and EOL care, state laws and regulations concerning advance directives and medical licensure, and literature concerning the fiduciary obligations of physicians were reviewed and compared with the 2006 UAGA and its 2007 amendment. We examined the legal and medical ethics literature to evaluate the 2006 UAGA and its 2007 amendment. The 2006 UAGA reflects the important public policy goal of making more organs available for transplantation. However, it transfers authority over EOL decisions from patients or surrogates to organ procurement organizations, which is inconsistent with EOL U.S. common law and the ethical and legal standards that govern medicine. The extent of informed consent transferred to organ procurement organizations at the time of signing a donor registry card is legally and ethically uncertain under the UAGA. As states consider enacting the 2006 UAGA, further revisions should be considered to balance the public policy goals of increasing the availability of donated organs with truly informed and voluntary EOL decisions for patients. Further revision of the 2006 UAGA is necessary to respect patients' civil liberties and the professional integrity of physicians who have legally and ethically recognized fiduciary duties to their dying patients.

End-of-Life Care in Israel—The Dying Patient Law, 2005

After years of political stalemate on the issue of end-of life medical care in Israel, the Knesset enacted the Dying Patient Law in 2005. This Article argues that the new law manifests a paradigm shift in the normative framework regulating end-of-life treatment in Israel, from a patient right approach based on the principle of autonomy, to a physician duty approach based on the principle of the sanctity of life. In so doing the law created a complex web of formal procedural rules and culturally unique legal artifices, which amount to a maze of medicolegal technocracy. The technocratic maze conceals substantive restrictions on rights to patient autonomy which had been recognized in the former case law in relation to the withholding and withdrawal of medical treatment. In particular, under the new law, the request of a competent patient to withdraw artificial respiration may not be respected, and the advance directives of an incompetent patient to withhold artificial nutrition are of no effect. Beyond a question of constitutionality, the Article suggests that the underlying approach of the law to death and dying is an unskillful response to the challenges that have arisen from life extending technology.

Healthcare resource consumption in terminal care.

Recent developments in healthcare have raised important ethical challenges. One of the trends is the increasing attention to patient autonomy for medical decision making. Patients are exercising greater authority to refuse medical treatment and to seek medical treatment that may end life. Another important trend is that end of life medical care has become increasingly expensive. Further, changes in reimbursement for medical care may create incentives for providers to deny heroic treatment. This article reviews issues relevant to these developments. We consider the issue of medical futility, the role of advance directives, and the international movement toward the legalisation of euthanasia. We suggest that futile medical treatment should not be offered and that advance directives should he used. However, review of the literature suggests that advance directives may not reduce medical costs. The effect of managed care upon advance directives, denial of heroic care and euthanasia is not known at this time.