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"Terminal diseases"
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Healthcare trajectories of aging individuals during their last year of life: application of process mining methods to administrative health databases
by
Langford-Avelar, Alexandra
,
Duc, Juliette
,
Bosson-Rieutort, Delphine
in
Administrative health data
,
Aged
,
Aged, 80 and over
2025
Context
World is aging and the prevalence of chronic diseases is raising with age, increasing financial strain on organizations but also affecting patients’ quality of life until death. Research on healthcare trajectories has gained importance, as it can help anticipate patients’ needs and optimize service organization. In an overburdened system, it is essential to develop automated methods based on comprehensive and reliable and already available data to model and predict healthcare trajectories and future utilization. Process mining, a family of process management and data science techniques used to derive insights from the data generated by a process, can be a solid candidate to provide a useful tool to support decision-making.
Objective
We aimed to
(1)
identify the healthcare baseline trajectories during the last year of life,
(2)
identify the differences in trajectories according to medical condition, and
(3)
identify adequate settings to provide a useful output.
Methods
We applied process mining techniques on a retrospective longitudinal cohort of 21,255 individuals who died between April 1, 2014, and March 31, 2018, and were at least 66 years or older at death. We used 6 different administrative health databases (emergency visit, hospitalisation, homecare, medical consultation, death register and administrative), to model individuals’ healthcare trajectories during their last year of life.
Results
Three main trajectories of healthcare utilization were highlighted:
(i)
mainly accommodating a long-term care center;
(ii)
services provided by local community centers in combination with a high proportion of medical consultations and acute care (emergency and hospital); and
(iii)
combination of consultations, emergency visits and hospitalization with no other management by local community centers or LTCs. Stratifying according to the cause of death highlighted that LTC accommodation was preponderant for individuals who died of physical and cognitive frailty. Conversely, services offered by local community centers were more prevalent among individuals who died of a terminal illness. This difference is potentially related to the access to and use of palliative care at the end-of-life, especially home palliative care implementation.
Conclusion
Despite some limitations related to data and visual limitations, process mining seems to be a method that is both relevant and simple to implement. It provides a visual representation of the processes recorded in various health system databases and allows for the visualization of the different trajectories of healthcare utilization.
Journal Article
Drivers of prognosis and clinical trajectories differ between COVID and non-COVID acute hypoxic respiratory failure
by
Levitt, Joseph E.
,
Moore, Andrew R.
,
Wilson, Jennifer G.
in
Aged
,
Automobile drivers
,
Comorbidity
2025
Examine non-respiratory comorbidities that may affect prognosis in acute hypoxic respiratory failure (AHRF) and respiratory trajectories, comparing those with COVID and non-COVID etiologies of AHRF.
This is a retrospective cohort study of patients with AHRF from COVID and non-COVID etiologies treated with high flow oxygen, noninvasive ventilation, or endotracheal intubation in ICUs in two United States hospitals.
We compared drivers of prognosis and respiratory trajectories between 241 patients with AHRF from COVID and 99 patients with non-COVID AHRF. Patients with COVID had a lower prevalence of major comorbidities or terminal illness (OR 0.14), neurologic disease (OR 0.19), goals of care limitations (OR 0.54), and shock (OR 0.11). A lower proportion of the COVID group were managed with invasive mechanical ventilation (IMV) early in their AHRF course (OR 0.15); however, fewer COVID patients had improvement in AHRF in the first 7 days (OR 0.49), and a greater proportion of COVID patients required IMV on day 14 (OR 2.57). Additionally, fewer COVID patients died or transitioned to comfort care within 14 days following AHRF onset (OR 0.24), and more COVID patients had severe hypoxemia at end-of-life (OR 2.42).
Patients with AHRF from COVID had fewer non-respiratory comorbidities or goals of care limitations, more prolonged respiratory failure and higher risk of mortality related to hypoxemia. These differences could explain why patients with COVID AHRF may experience greater benefit from disease-specific therapies targeting AHRF compared to patients with non-COVID AHRF.
Journal Article
Retrospective review of deaths in the Massachusetts department of corrections after passage of medical parole
by
Mushero, Nicole
,
Suh, Michelle
,
Kler, Jasdeep S.
in
Analysis
,
Bills, Legislative
,
Biostatistics
2025
Background
There are roughly 6,000 individuals incarcerated in the Massachusetts Department of Corrections (MADOC), and in 2025, 32% of these individuals were age 50 and older. Older incarcerated individuals have a higher burden of chronic disease, and caring for them is associated with higher healthcare costs. In 2018, Massachusetts passed legislation enabling medical parole, a process by which an individual can be released due to terminal illness or permanent incapacitation. Existing literature suggests medical parole is underutilized. The aim of this study was to characterize the cause of death of individuals in MADOC custody to determine potential medical parole eligibility and gaps in referrals.
Methods
We conducted a retrospective analysis of deaths of individuals in MADOC custody between 2021 and 2023 using death records obtained from MADOC and death certificates from the Massachusetts Vital Statistics Program. Cause of death was categorized through structured review of death certificates and supplemental MADOC medical documentation.
Results
Between January 1, 2021 and December 31, 2023, 87 individuals died in MADOC custody. The primary disease processes leading to death involved infection (28%), complications of chronic disease (25%), and cancer (22%). Nearly half (41.7%) of infection-related deaths were due to COVID-19. The most common causes of death categorized by primary organ system were cardiovascular conditions (26%) and respiratory conditions (25%). The majority of deaths were attributed to acute causes (58%).
Conclusions
In our study, nearly half of the population died in custody from a chronic condition or complications related to a chronic condition and could have been identified for medical parole eligibility. The majority of individuals died from acute causes, suggesting the need for an expedited review process and expanded eligibility criteria. A small number of correctional facilities and hospitals saw the majority of deaths, and these locations may be ideal targets for future interventions. Further work is needed to compare death data before and after the COVID-19 pandemic, assess barriers to utilization of medical parole, and explore other interventions to decrease the number of deaths in MADOC custody.
Journal Article
Predicting mortality dynamics in cancer patients: A machine learning approach to pre-death events
2025
Capturing the dynamic changes in patients’ internal states as they approach death due to fatal diseases remains a major challenge in understanding individual pathologies and improving end-of-life care. However, existing methods primarily focus on specific test values or organ dysfunction markers, failing to provide a comprehensive view of the evolving internal state preceding death. To address this, we analyzed electronic health record (EHR) data from a single institution, including 8,976 cancer patients and 77 laboratory parameters, by constructing continuous mortality prediction models based on gradient-boosting decision trees and leveraging them for temporal analyses. We applied Shapley Additive exPlanations (SHAP) to assess the contribution of individual features over time and employed a SHAP-based clustering approach to classify patients into distinct subtypes based on mortality-related feature dynamics. Our analysis identified three distinct clinical patterns in patients near death, with key laboratory parameters—including albumin, C-reactive protein, blood urea nitrogen, and lactate dehydrogenase—playing a critical role. Dimensionality reduction techniques demonstrated that SHAP-based patient stratification effectively captured hidden variations in terminal disease progression, whereas traditional stratification using raw laboratory values failed to do so. These findings suggest that machine learning-driven temporal analysis can reveal clinically meaningful state transitions that conventional approaches overlook, offering new insights into the heterogeneous nature of terminal disease progression. This framework has the potential to enhance personalized risk stratification and optimize individualized end-of-life care strategies by identifying distinct patient trajectories that may inform more targeted interventions.
Journal Article
Diverging paths: how different countries have designed and implemented medically assisted dying
2025
Issue Several European countries are debating or have recently legalised assisted dying. This includes France and the UK, which introduced bills in 2024 with discussions ongoing. Assisted dying is already permitted in several European countries, including Austria, Belgium, the Netherlands, Spain, and Switzerland. While the study takes no position on whether assisted dying should be permitted, it aims to support policymakers currently debating assisted dying by examining how existing legislation has impacted patients, professionals, and services internationally. Description This analysis systematically reviews literature and policy documents from nine OECD countries where assisted dying is legal, published between 2010-2024. It examines how assisted dying is delivered, health professionals’ roles, and how access has evolved. Key issues explored: How have systems balanced safeguards and access? How is professional objection managed? What impact has assisted dying services had on patients, staff and service delivery? Results We found wide variation in how assisted dying is organised across systems. All countries have similar pathways, but wide variation exists regarding eligibility criteria (e.g., terminal illness vs. enduring suffering), safeguards (e.g., waiting periods), and assessment procedures. Despite growing uptake, assisted deaths remain a small proportion of overall deaths in countries where legal (0.1 to 5.3% in 2023). Lessons Implementation choices affect access, public trust, and professional involvement. Assisted dying can require major system changes, including new clinical training, data collection and monitoring infrastructure. Balancing safeguards with access is a challenge across countries, and the implications need to be carefully considered. Key messages • There is a broad spectrum of legislation and practice across countries that affect access to assisted dying services, what roles and responsibilities professionals hold, and how safeguards are upheld. • As more countries consider assisted dying legislation, the countries with implementation experience offer critical learning.
Journal Article
Uganda's “anti-homosexuality” bill already affecting care
2023
A copy of the bill obtained by The Lancet says that consensual sex between people born of the same sex can put someone in prison for life, and those attempting to “perform a sexual act” can be sentenced to a decade in prison. A person would face the death penalty for “aggravated homosexuality”, which includes a “serial offender” of consensual sex, as well as for same-sex relations with someone with a disability, with someone with mental illness, with someone of older age, if a person contracts a terminal illness, and if a person's partner is under the influence of alcohol, among other circumstances. Health-service providers said some people who are LGBTQ+ have already stopped seeking services after the bill's passing, and some health workers turned away patients due to homophobia or fear of penalties. Uganda hosted clinical trials of the long-lasting injectable drug cabotegravir used as PrEP for HIV and is on track to receive shipments through PEPFAR, said Mitchell Warren, Executive Director of AVAC, an HIV prevention organisation.
Journal Article
Finding A Voice For The Terminally III
2024
A patient with terminal illness reflects on the reluctance in health care to discuss death.
Journal Article
“The message hurts, but it would be worse if nothing was said” – Communicating severe illness and the imminence of death to patients with end stage heart failure and their families – A longitudinal interview study
by
Liljeroos, Maria
,
Pohl, Annika
,
Jaarsma, Tiny
in
Aged
,
Aged, 80 and over
,
Biology and Life Sciences
2025
Discussions about severe illness and the coming death do not often take place with patients with heart failure and their family. We therefore aimed to investigate how patients with end-stage heart failure and their family who discussed terminal illness and the imminence of death with a physician, experienced such communication, how they handled life emotionally and practically after said discussions, and if/how this changed over time.
A longitudinal interview study. Ten patients with end-stage heart failure and their closest kin were visited by a physician at home and discussed terminal illness during one visit and the imminence of death during another visit. They were interviewed three times about how they experienced the communication and how they handled life in this situation and in relation to the discussions. The interviews were analysed using qualitative thematic analysis by Braun and Clarke.
Two main themes and five subthemes were found. The first theme was 'an honest and clear message hurts, but it would be worse if nothing was said', and the subthemes included information on the experiences of communication, the desired level of communication by patients and family members and factors facilitating communication. The second theme was 'A clear message helps in handling life' with the subthemes of coping psychologically and practically. The findings indicate that for some patients and family members it was hard to have discussions about end-stage heart failure and the imminence of death. However, they found the discussions important and were happy that the information was not withheld from them. The discussions helped in handling life and most patients and family seemed to have found a way to accept and handle the situation. Practical planning often did not start until they heard from the physician that death could come soon.
This study confirms that patients and family members want and appreciate discussions about severe illness and the imminence of death and find them important. This can encourage physicians to change behaviour and engage in honest discussions, and to educate and train colleagues to do the same.
Journal Article
Deactivation of Implantable Cardioverter Defibrillator in Patients With Terminal Diagnoses
2019
Implantable cardioverter defibrillators (ICDs) prevent sudden cardiac death. However, in patients with terminal illnesses, these devices may disrupt the dying process. This study was undertaken to review our current strategies surrounding device deactivation. A retrospective chart review was performed at Kingston Health Sciences Centre of patients with an ICD who died from 2015 to 2018. Data collected included patient demographics, clinical details surrounding device implantation, patient co-morbidities leading to deactivation, time to deactivation, physical place of deactivation, and device programming information. Ethics approval was obtained from the Queen's University Health Sciences Research Ethics Board. A total of 49 patients were included for analysis. Mean age at the time of death was 77.5 years (range: 57 to 94 years) and 12.2% (6/49) were women. The indications for ICD implantation were primary prevention of sudden cardiac death in 69.4% (34/49) and secondary prevention in 30.6% (15/49). Deactivation as part of end-of-life care was performed in 32.7% of patients (16/49). Deactivations occurred in clinic in 6.1% (3/49) of patients, on hospital inpatient wards in 12.2% (6/49) of patients, and in critical care settings in 14.2% (7/49) of patients. The remaining 67.3% (33/49) of patients died with fully functioning devices in place. The most prevalent terminal diagnoses were metastatic cancer (22.4%) and end-stage congestive heart failure (20.4%). On average, patients had their devices deactivated 13 months (range: 0 to 62 months) after their terminal diagnosis was established. Once a patient was documented as Do Not Resuscitate (DNR), deactivation was discussed and carried out within a mean time of 38 days (range: 0 to 400 days). Seven patients had their device active for more than 1 month after being documented as DNR. Ten patients (20.4%) received ICD shocks after their terminal diagnosis, 9 received shocks in the month before death, and 2 received shocks after formal DNR orders were in place. Approximately one-third of patients with ICDs received deactivation of their cardioversion/defibrillation therapies as part of their end-of-life care plan. A relatively high proportion of patients (20%) received an ICD shock in the last month of life. In conclusion, addressing device programming needs, including deactivation of cardioversion/defibrillation therapies, should be considered in the context of a patient's goals of care in every patient with an ICD who has a co-existing life-limiting diagnosis.
Journal Article
Ethical Issues of Dementia Directives for Stopping Eating and Drinking
2024
Background: Nutrition care has been at the centre stage of major medical controversies that contributed to shape the clinical ethics field and to redefine patients healthcare rights. Numerous US court cases from the 80s (Herbert, Hier, Conroy, Bouvia, Brophy, Cruzan) consisted of clinical dilemmas specifically about artificial nutrition support (ANS) treatment decisions. These cases established that ANS had to be considered as any other life-sustaining treatment, despite its particular nature of being related to a basic physiological need. Therefore, ANS ought to generate greater benefits than burdens for the patients clinical situation to be worth of consideration in care plan (proportionality principle) and also could be withheld/withdrawn accordingly to patients wishes about how to lead a fulfilled and dignified life (selfdetermination principle). Yet, controversy about nutrition care still remains nowadays. It has shifted to oral feeding care dilemmas, as a growing number of dementia patients advocates wish to enforce wills of stopping eating and drinking by advance directives (SED by AD). Aim: To reflect with the audience on the ethical issues related to SED by AD. Summary: SED is a well recognized and established end-oflife option for mentally capable individuals experiencing a terminal illness. The main issue is whether or not this will should be binding when a patient loses his decisional capacity, which emphasised an ethical tension between anticipated consent and immediate consent to oral feeding support. SED by AD is viewed as a potential breach to end life where euthanasia remains illegal or when its provisions are too limiting for dementias specificities. Discussion: The subject of SED by AD provides us greater insights to think critically about the burden of food modifications brought benevolently to fight malnutrition among elders, but that also might prolong unnecessarily and unwantedly the experience of a life of sufferings with an incurable illness.
Journal Article