Diagnosis Of Terminal Illness Research Articles

Did the Palliative Care Outcomes Collaboration (PCOC) program lead to improved end-of-life care quality and reduced non-beneficial treatments?

Palliative Care Outcomes Collaboration (PCOC) is an internationally recognized program developed in Australia. Taiwan became the first country in Asia to implement PCOC in 2020. There is little research on the impact of PCOC in Asia. We sought to examine the effects of the Taiwan PCOC on palliative outcomes. The study analyzed the impact of PCOC with a retrospective cohort design. The hypotheses were that PCOC could improve end-of-life care quality and reduce non-beneficial treatments. The study enrolled patients with terminal illnesses from the inpatient palliative care units. General characteristics of participants were collected. Exclusion criteria were people without a diagnosis of terminal illness, aged 20 and younger, or with missing data. The study collected 1,121 patients, 555 in the PCOC comparison group and 566 in the intervention group. Most patients were with terminal cancer (88.58%). The rates of hospital deaths in the PCOC and non-PCOC groups were 68.73% vs. 74.95% (P = 0.021). A multivariable logistic regression model, adjusting for age, sex, Charlson comorbidity index, and terminal cancer status, was utilized. The PCOC intervention significantly decreased hospital deaths (OR = 0.26, 95%CI 0. 16-0.41, P < 0.001). PCOC in Taiwan significantly reduced hospital deaths among terminal patients, possibly due to effective symptom management and improved communication via the use of patient-reported outcomes. Further research is needed to support PCOC implementation in Asia and investigate collaboration programs' impact on end-of-life care quality and non-beneficial treatments.

Antibiotics in the end-of-life phase in pediatric oncological patients with a diagnosis of terminal illness: a dilemma.

Pediatric cancer patients in the final phase of life receive antibiotics empirically. The decision to start, maintain, or stop the antibiotic administration as part of care at this stage is a dilemma. We conducted a retrospective, descriptive, cross-sectional study including cancer patients in the final phase of life, hospitalized during the last 5 to 7 days of life. We included demographic variables, diagnoses, days of hospitalization, cultures, antibiotics used, prevalent symptoms in the last week of life, and principal diagnosis at the time of death, and performed descriptive statistics and a chord diagram. Twenty-two patients were included; 18 (81.81%) received antibiotic treatment. The mean age was 8.75 years. The predominant pathologies were central nervous system tumors in seven patients (31.81%). Of the total, 18 (81.81%) had an infectious diagnosis reported as bloodstream infection, followed by pneumonia in three (13.63%). The main cause of death was respiratory failure (40.9%). Of the 18 patients with an infectious diagnosis, 16 (88.88%) received empiric therapy. Predominant factors for antibiotic use were more than 7 days of hospitalization (75%), ICU admission (100%), invasive devices (88.8%), and aminergic support (100%). The predominant symptoms were dyspnea (68.18%), pain (50%), and fever (40.9%), which persisted in nine (60%), two (18.18%), and five (55.5%) patients, respectively. The lack of guidelines for antibiotic administration leads to excessive and potentially unnecessary use, which can lead to discomfort, prolonged hospitalization, bacterial resistance, excessive cost, and suffering without symptom control.

Grief, Loss and Bereavement. Understanding Concepts, Clinical Manifestations and Cultural Considerations at End of Life.

The weight of grief is heavy on both patients with terminal illness, and their loved ones. We are now aware that grief is not limited to the time of death-grief reactions begin to occur at the time of diagnosis of terminal illness and evolve over time, impacting the patient and family unit in a variety of ways. Loss of what life "could have been" with better health, decline in physical functioning due to illness, and loss of identity and role within the family or community all play a part in the grieving process.

Palliative radiation therapy in bladder cancer: a matter of dose, techniques and patients’ selection

Palliative care privileges comfort over healing, with the main intent on management of symptoms such as pain or bleeding. Usually palliative cares are reserved for patients with a diagnosis of terminal illness with less than 6-month life expectancy when the curative treatments are no longer possible (1).

Sweet Everlasting Voices1

In this article I examine voices within the personal context of an uncanny coincidence, when my mother's sudden diagnosis of terminal illness and my own voice and performance practice began to overlap and resonate in a way that was completely unexpected, yet strangely helpful. In reflecting on this time and the memories of her voice and others, I also consider the practice of singing to the dying from a time when Hebridean islanders used death croons to ease the path of the dying, to present day examples (including pioneering projects such as The Chalice of Repose) and I weigh the value of 'lost voices' restored to us through recording. I make observations on the effect those voices have upon us whether of family members, or voices of the famous and celebrated, and discuss what can be discerned through listening, that maybe is less apparent through looking.

Disclosure of cancer diagnosis in China: the incidence, patients' situation, and different preferences between patients and their family members and related influence factors.

PurposeThe purpose of this study was to investigate the disclosure incidence of cancer diagnosis to patients before chemotherapy, to survey the attitudes of the patients and their families and related influencing factors toward disclosure of cancer diagnosis, and to compare the anxiety and depression levels between the disclosure and non-disclosure patients.Participants and methodsA prospective cohort study was conducted at a tertiary hospital in China. A consecutive series of patients who had been diagnosed with malignancy by pathology and their family member were included in our study from March 2017 to December 2017. Patients’ situation, preferences, and their family members’ preferences were investigated by a self-designed questionnaire following a semi-structured interview. The Chinese version of HADS for anxiety and depression was used to test the patients’ psychological distress. Binary logistic regression was used to analyze the related influencing factors of patients’ disclosure of their diagnosis.ResultsA total of 124 pairs of patients and their family members were analyzed. Of the 124 patients, 47 (37.90%) patients knew about their cancer diagnosis and 77 (62.10%) patients did not know about their cancer diagnosis before chemotherapy. There were more patients than family members who wanted the patients to be informed about the diagnosis of terminal illness (91.9% vs 53.2%, P<0.01). Binary logistic regression analysis showed that patients with university education (odds ratio [OR], 15.322; 95% confidence interval [CI], 1.781–131.781; P<0.05), patients having equal or above average annual income (OR, 5.170; 95% CI, 1.842–14.514; P<0.01) were more likely informed about cancer diagnosis before chemotherapy. Higher anxiety level was found in diagnosis non-disclosure group (P<0.05) and no significant difference in depression score between two groups (P>0.05).ConclusionMore than half of the patients did not know their exact diagnosis before chemotherapy in China. Educational level and economic status may be influencing factors for the disclosure of cancer diagnosis. Patients and their family members had different preferences toward diagnosis disclosure.

The Use of Humor in Palliative Care: A Systematic Literature Review.

Humor has its own place in the context of medicine. Nevertheless, its acceptance by terminal stage patients and health-care professionals has not been studied in depth and is not free from controversy. To understand the significance, appropriateness, and pertinence of the use of humor in palliative care and to analyze its applicability. A narrative systematic review was undertaken and included in PROSPERO. Online searches were carried out on PUBMED, PSYCINFO, EBSCO (CINHAL), EMBASE, SCIELO, SCOPUS, TESEO, WEB of SCIENCE, and COCHRANE between their launch date and December 31, 2015, complemented with manual searches with queries to experts. A total of 156 studies were identified, which were then filtered in pairs by means of an established hierarchy, selecting studies that discussed the use of humor specifically in palliative care from all perspectives and designs, and finally published in Spanish, English, French, or Portuguese. Critical reading of all the selected studies took place, with no exclusions due to quality evaluation. Thirty-four studies were included. Five main topics were identified: (1) definition of humor, (2) use and functions of humor in palliative care, (3) how to use humor, (4) when not to use humor, and (5) humor before and after the diagnosis of terminal illness. Humor plays an unquestionable role in palliative care, but its use needs training and appropriate use.

The EMDR Integrative Group Treatment Protocol for Patients With Cancer

Experiencing cancer is a peculiar stressor within the infrastructure of posttraumatic stress disorder (PTSD) because this debilitating disease involves ongoing stressors and is both acute and potentially chronic. The experience can include a wide range of associated adverse events, such as tumor detection, diagnosis, severity of disease, and prognosis; aggressive treatment; disfigurement and bodily dysfunction; side effects of treatment; impaired physical, social, and occupational functioning; and sometimes, recurrence and diagnosis of terminal illness. This article provides a detailed description of the clinical application of the Eye Movement Desensitization and Reprocessing (EMDR) Integrative Group Treatment Protocol (EMDR-IGTP) Adapted for Adolescents and Adults Living with Ongoing Traumatic Stress for the patients with cancer. This protocol administers the eight phases of EMDR individual treatment to a group of patients using an art therapy format (i.e., drawings) and the butterfly hug (a self-administered bilateral stimulation method to process traumatic material). A previous study (Jarero et al., 2015) showed that after 6 sessions of EMDR-IGTP, there was a significant decrease in PTSD symptoms related to the diagnosis and treatment of different types of cancer in adult women. Effects were maintained at 90-day follow-up. In this article, we discuss how this protocol can be used to effectively provide intensive EMDR treatment to large groups of patients, and we provide detailed instructions for its provision to address one of the major psychological dimensions of cancer: the ongoing traumatic stress responses experienced by patients with cancer. A clinical example illustrates the treatment process.

The Leader as Artist

The Leader as Artist

Actitud de los usuarios de centro de salud ante el diagnóstico de enfermedad terminal

To calculate the prevalence of users who want to know their diagnosis of terminal illness and to analyse the factors determining their decision. Descriptive, observational, cross-sectional study. Six lists belonging to two Health Districts in Asturias Health Area III. On-demand users of the clinic, over 17 years old, selected by systematic randomized sampling stratified according to the number of consultations at the centre. Through a questionnaire composed by the researchers and face-to-face interviews, social and personal variables and attitudes to a diagnosis of terminal illness were collected. The sample consisted of 388 people. A descriptive analysis and population calculations were made, with a logistical regression analysis to identify associated variables. 70.6% of those questioned (95% CI, 66%-75.1%) wanted to know their diagnosis, mainly on the basis of their right to the information (35.1%; 95% CI, 29%-40.6%). Most of these wanted to be informed by the doctor (81.9%; CI, 77.5%-86.5%). The variables significantly linked to a positive reply were: male (OR, 1.91; CI, 1.1%-3.4%), age (OR, 0.97; CI, 0.95%-0.99%), religious beliefs (OR, 0.2; CI, 0.1%-0.8% for believers), fear of pain and disability (OR, 3.8; CI, 1.2%-12%), and having previously thought about wanting to be informed (OR, 2.2; CI, 1.2%-4%). This last variable achieved the highest partial correlation coefficient (R, 0.12). Most users want to be informed of a diagnosis of terminal illness. The profile of the patient who wants to know the truth is: young male, non-believer, and someone whose main fears of terminal illness are pain and disability. The variable with most influence on the positive reply was having posed the question previously.

The Oregon Report Don't Ask, Don't Tell

In a public document,[1] an article in the New England Journal of Medicine,[2] a National Press Club briefing, and visits to various congressional offices, the Oregon Health Division (OHD) has argued that assisted suicide is being carried out safely under the state's Death with Dignity Act. Unfortunately, the report is marked by its failure to address the limits of the information it has available, overreaching its data to draw unwarranted conclusions. Most striking, and least justified, is its contention without substantiating patient data that patients who were assisted in suicide were receiving adequate end-of-life care. In fact, we know nothing about the physical, psychological, and existential needs of the patients requesting assisted suicide. We know little of the capabilities of the physicians who are responding to those requests. And we know nothing of the context in which these patients live and are cared for. We opposed the legislation, but since it was passed both advocates and opponents share a responsibility to see to it that the law is administered so as to best protect patients. If insufficient data is being obtained in a flawed monitoring process, everyone should be concerned. Limited Data The data OHD has collected is largely epidemiological: the assisted suicide cases were divided between men and women, the median age of the patients was sixty-nine, all the patients were white, all but two of them had cancer, and the patients who chose assisted suicide were more likely to be divorced or never to have married. Physicians participating in assisted suicide are not asked to provide OHD with significant medical information about their patients. They are merely asked to check off a list on an OHD form indicating that such statutory requirements as a written request for a lethal dose of medication, a fifteen-day waiting period, and consultation with another physician have been met. Only one line is provided for both diagnosis and prognosis, although a diagnosis of terminal illness and prognosis of death within six months are the essential requirements for assisted suicide in the state. The form does not inquire on what basis the physician made the medical diagnosis--for example, review of x-rays, written material, pathology reports, or other information. Nor are physicians asked to report on what basis they made the prognosis--what tables they have used, what experts they have consulted. The form does not even inquire as to the patient's reasons for requesting assisted suicide. The data do not make it possible to know what transpired in any particular case. To supplement the meager information required by formal reporting, OHD asked physicians who participated in assisted suicide to respond in person or by phone to a questionnaire that was also given to physicians of a comparison (control) group of patients who died of similar illnesses without assisted suicide. OHD does not tell us who asked the questions, what their training was, and whether any follow-up questions were asked. But the questionnaire (published on the Internet)[3] and the report show that this effort was also flawed. Missing medical information was not asked for or provided. In the absence of medical data, how does OHD reach its conclusion that patients received adequate end-of-life care? From the facts--derived from the physician questionnaire--that the proportion of patients who had advance directives and were enrolled in hospice programs was comparably high for both the case and comparison groups, and that neither worry about pain control nor financial concerns drove patients' requests for assisted suicide. But neither advance directives nor enrollment in a hospice program provides proof of competent assessment and treatment--the essential components of adequate care--any more than does patients' apparent silence about palliative care or financial concerns. Such figures cannot substitute for direct knowledge of patients and their illnesses. …

Ego development in the face of death: How being HIV positive affects movement through Erikson's adult stages of development

Erikson's epigenetic model of psychosocial development posits that each of eight stages unfolds in a particular sequence, and each becomes the primary issue of concern at specified times in the life cycle. Erikson does not address, nor could any empirical studies be located, exploring how the emergence of these eight stages might be affected by a diagnosis of terminal illness. The purpose of this study was to understand how an HIV-positive diagnosis affected movement through Erikson's stages of development. In-depth interviews were conducted with a sample of 18 HIV-positive men and women under 45 years of age. Analysis of the qualitative data revealed three findings regarding Erikson's stages: (1) The fifth stage of idenitity versus role confusion was revisted and the sense of self is redefined; (2) the three adulthood stages of intimacy versus isolation, generativity versus stagnation, and ego integrity versus depair were dealt with simulataneously and, in most cases, resolved favorably; and (3) intimacy and generativity enabled and supported the resolution of the tasks of identity and ego integrity.

Assessing medical care of dying residents in nursing homes.

Although approximately one of five people in the United States die in nursing homes (NHs), little has been written about their quality of dying, including the quality of terminal medical care. The purpose of this study is to review actual medical practices in NHs to suggest factors important for delivering good quality terminal care. Four NHs were surveyed for management of residents who died in 1992. A convenience sample of charts of newly admitted and longer term residents were abstracted for demographic variables, death, diagnostic categories, and various laboratory and other parameters. Charts of those residents who died were further reviewed using indicators of quality medical care, such as presence of advance directives, control of pain, and control of dyspnea, based upon recent published clinical practice guidelines for terminal care in NHs. Three hundred and seventy-one charts were abstracted. Forty-one charts documented the resident's death. We found that NHs without regulatory difficulties usually had expected deaths that were managed approximately as measured by terminal medical care quality indicators. NHs with a history of regulatory difficulties had a higher prevalence of residents who died suddenly and unexpectedly, often with problems in the quality of care as measured by the same indicators. There was a correspondence between physician certification, antemortem diagnosis of terminal illness, and appropriate terminal care. We conclude that physicians are able to recognize impending death and redirect the medical care of dying NH residents toward goals of terminal care management. This is more likely to occur in a NH environment that places greater emphasis upon total quality management. We suggest that another indicator in providing good NH terminal care is the physician's performance in predicting a short life expectancy.

Dying, death, and grief

PREVIEWA diagnosis of terminal illness is like a stone thrown into the pool of a patient's life. The grief that ripples out from that “stone” begins with the diagnosis and continues through the illness and death, affecting the patient, his or her family and friends, and even the caregivers. Distinguishing normal grief from abnormal grief or a mood disorder is an essential skill for family physicians, and open, supportive communication is the most critical management tool.

Terminal care: coping with dying and bereavement.

This article explores the likely processes which patients and families undergo from the diagnosis of terminal illness to the loss of a loved one. The author argues that only by understanding these processes can nurses hope to offer appropriate care and support to affected individuals