Withholding Of Care Research Articles

Long-stay ICU patients with frailty: mortality and recovery outcomes at 6 months

BackgroundProlonged intensive care unit (ICU) stay is associated with physical, cognitive, and psychological disabilities. The impact of baseline frailty on long-stay ICU patients remains uncertain. This study aims to investigate how baseline frailty influences mortality and post-ICU disability 6 months after critical illness in long-stay ICU patients.MethodsIn this retrospective cohort study, we assessed patients hospitalized for ≥ 7 days in the ICU between May 2018 and May 2021, following them for up to 6 months or until death. Based on the Clinical Frailty Scale (CFS) at ICU admissions, patients were categorized as frail (CFS ≥ 5), pre-frail (CFS 3–4) and non-frail (CFS 1–2). Kaplan–Meier curves and a multivariate Cox model were used to examine the association between frailty and mortality. At the 6 month follow-up, we assessed psychological, physical, cognitive outcomes, and health-related quality of life (QoL) using descriptive statistics and linear regressions.ResultsWe enrolled 531 patients, of which 178 (33.6%) were frail, 200 (37.6%) pre-frail and 153 (28.8%) non-frail. Frail patients were older, had more comorbidities, and greater disease severity at ICU admission. At 6 months, frail patients presented higher mortality rates than pre-frail and non-frail patients (34.3% (61/178) vs. 21% (42/200) vs. 13.1% (20/153) respectively, p < 0.01). The rate of withdrawing or withholding of care did not differ significantly between the groups. Compared with CFS 1–2, the adjusted hazard ratios of death at 6 months were 1.7 (95% CI 0.9–2.9) for CFS 3–4 and 2.9 (95% CI 1.7–4.9) for CFS ≥ 5. At 6 months, 192 patients were seen at a follow-up consultation. In multivariate linear regressions, CFS ≥ 5 was associated with poorer physical health-related QoL, but not with poorer mental health-related QoL, compared with CFS 1–2.ConclusionFrailty is associated with increased mortality and poorer physical health-related QoL in long-stay ICU patients at 6 months. The admission CFS can help inform patients and families about the complexities of survivorship during a prolonged ICU stay.

Experiences of racial Trauma among perinatal women of color in seeking healthcare services

ObjectiveTo describe the experiences of perinatal Black, Indigenous, and other People of Color (BIPOC) women in healthcare interactions. MethodsWe conducted eight virtual focus groups with perinatal BIPOC women across the USA from November 2021 to March 2022. A semi-structured interview protocol was used, and focus groups were audio recorded and transcribed verbatim. Our team used reflexive thematic analysis to analyze the qualitative data and describe our findings. ResultsThree latent themes emerged related to racial trauma in healthcare interactions: (1) observations and experiences of anti-Black bias, (2) experiences of dismissal of pain and withholding of care, particularly among Black and Latinx patients, and (3) common race-based traumatic experiences across all BIPOC women, including a consistent lack of bodily autonomy and deferral to White people for decision-making. Recommendations from participants included more transparent communication and greater empathic care for all patients, with calls to specifically address anti-Black bias in healthcare treatment. ConclusionThe study's findings suggest that perinatal healthcare needs to reduce mental stress and exposure to racial trauma for perinatal BIPOC women. This study offers a discussion of implications for future training for healthcare providers and implications for addressing systemic racial disparities in perinatal mental health.

The Myth of Choice

The Myth of Choice

Patterns of Care in Hospitalized Vascular Surgery Patients at End of Life

There is limited literature reporting circumstances surrounding end-of-life care in vascular surgery patients. To identify factors driving end-of-life decisions in vascular surgery patients. In this cohort study, medical records were reviewed for all vascular surgery patients at a tertiary care university hospital who died during their hospitalization from 2005 to 2014. Patient, family, and hospitalization variables potentially important to influencing end-of-life decisions. Of 111 patients included (67 [60%] male; median age, 75 [range, 24-94] years), 81 (73%) were emergent vs 30 (27%) elective admissions. Only 15 (14%) had an advance directive. Of the 81 (73%) patients placed on comfort care, 31 (38%) had care withheld or withdrawn despite available medical options, 15 (19%) had an advance directive, and 28 (25%) had a palliative care consultation. The median time from palliative care consultation to death was 10 hours (interquartile range, 3.36-66 hours). Comparing the 31 patients placed on comfort care despite available medical options with an admission diagnosis-matched cohort, we found that more than 5 days admitted to the intensive care unit (odds ratio [OR], 4.11; 95% CI, 1.59-10.68; P < .001), more than 5 days requiring ventilator support (OR, 9.45; 95% CI, 3.41-26.18; P < .001), new renal failure necessitating dialysis (OR, 14.48; 95% CI, 3.69-56.86; P < .001), and new respiratory failure necessitating tracheostomy (OR, 23.92; 95% CI, 2.80-204; P < .001) correlated with transition to comfort care. Palliative care consultations may be underused at the end of life. A large percentage of patients were transitioned to comfort measures despite available treatment, yet few presented with advance directives. In high-risk patients, discussions regarding extended stays in the intensive care unit, prolonged ventilator management, and possible dialysis and tracheostomy should be communicated with patients and families at time of hospitalization and advance directives solicited.

Maternal health: time for a radical reappraisal

Maternal health: time for a radical reappraisal

Ethnic disparities in end-of-life care after subarachnoid hemorrhage.

It is common for patients who die from subarachnoid hemorrhage to have a focus on comfort measures at the end of life. The potential role of ethnicity in end-of-life decisions after brain injury has not been extensively studied. Patients with subarachnoid hemorrhage were prospectively followed in an observational database. Demographic information including ethnicity was collected from medical records and self-reported by patients or their family. Significant in-hospital events including do-not-resuscitate orders, comfort measures only orders (CMO; care withheld or withdrawn), and mortality were recorded prospectively. 1255 patients were included in our analysis: 650 (52 %) were White, 387 (31 %) Hispanic, and 218 (17 %) Black. Mortality was similar between the groups. CMO was more commonly observed in Whites (14 %) compared to either Blacks (10 %) or Hispanics (9 %) (p = 0.04). In a multivariate analysis controlling for age and Hunt-Hess grade, Hispanics were less likely to have CMO than Whites (OR, 0.6; 95 %CI, 0.4-0.9; p = 0.02). Of the 229 patients who died, 77 % of Whites had CMO compared to 54 % of Blacks and 49 % of Hispanics (p < 0.01). In a multivariate analysis, Blacks (OR, 0.3; 95 %CI, 0.2-0.7; p < 0.01) and Hispanics (OR, 0.3; 95 %CI, 0.2-0.6; p < 0.01) were less likely to die with CMO orders than Whites. After subarachnoid hemorrhage, Blacks and Hispanics are less likely to die with CMO orders than Whites. Further research to confirm and investigate the causes of these ethnic differences should be performed.

Does diagnosis influence end-of-life decisions in the neonatal intensive care unit?

To determine the influence of physiological status and diagnosis at the time of death on end-of-life care. Retrospective descriptive study in a regional referral level IV neonatal intensive care unit (NICU) of infants who died from 1 January 1999 to 31 December 2008. Infants were categorized based on diagnosis (very preterm, congenital anomalies or other) and level of stability. Primary outcome was level of clinical service provided at end of life (care withheld, care withdrawn or full resuscitation). From 1999 to 2008, there were 414 deaths in the NICU. Congenital anomaly was the leading diagnosis at the time of death, representing 45% of all deaths. Comparing mode of death, very preterm newborns were more likely than infants with congenital anomalies to have received cardio-pulmonary resuscitation (CPR) at the time of death (26% vs 13%, P < 0.01) and were significantly more unstable (75% vs 52%, P < 0.01). Infants aged 22 to 24 weeks were mostly unstable and significantly more likely to receive CPR than infants with any other diagnosis. Over the 10-year period, very preterm infants were more likely to be physiologically unstable and to receive CPR at the time of death than infants with any other diagnosis. This finding was especially true for infants at the edge of viability (22 to 24 weeks). These differences in end-of-life care suggest that the quality of life and medical futility may be viewed differently for the least mature infants.

Persistent vegetative state after traumatic brain injury - a case report and review of the literature

Persistent vegetative state (PVS) is a chronic neurological disorder of consciousness, in which patients appear to be awake, but show no behavioural evidence of awareness. It cannot be diagnosed with certainty and misdiagnosis is very frequent. Its management has become one of the most controversial and emotive issues in medical ethics and medical law over the past few decades. The results of recent neuroimaging studies along with well-documented reports of significant late recovery of some PVS patients have challenged the long-held view that restoration of function in the severely traumatic brain injury (TBI) patients is not possible. Some clinicians believe that PVS is a misused term with the potential consequences of withdrawal and withholding of care, and tendency towards less aggressive management. Further naming these patients as “vegetative” has been misinterpreted by many groups that the patient is no more a human but “vegetable” like. Recently there has been an attempt to replace PVS by new, more appropriate name "Unresponsive Wakefulness Syndrome" (UWS). As opposed to brain death, PVS is not recognized by statute as death in any legal system. The context within which end of life decisions are being made for these patients has led to outrage especially if decisions were made to terminate hydration and nutrition. We present a case of young boy who is in a PVS following TBI with the aim to review some of the contemporary issues regarding their management. DOI: http://dx.doi.org/10.3329/bjms.v13i3.19159 Bangladesh Journal of Medical Science Vol.13(3) 2014 p.358-365

How Infants Die in the Neonatal Intensive Care Unit

To determine whether trends toward decreasing use of cardiopulmonary resuscitation at the time of death and increasing frequency of forgoing life-sustaining treatment had continued, as few studies quantifying mode of death for hospitalized infants have been conducted in the last 10 years. Retrospective descriptive study. Regional referral neonatal intensive care unit. Infants who died from January 1, 1999, to December 31, 2008. Infants were categorized into following categories: (1) very preterm (≤32 weeks' gestation); (2) congenital anomaly; and (3) other. The primary outcome was level of clinical service provided at the end of life (care withheld, care withdrawn, or full resuscitation). For 10 years, 414 neonatal patients died. Of these, 61.6% had care withdrawn, 20.8% had care withheld, and 17.6% received cardiopulmonary resuscitation. The percentage of deaths that followed withholding of treatment rose by 1% per year (P=.01). Most of this change was accounted for by withholding of therapy in the very premature group. During the 10-year period, the primary mode of death in this regional referral neonatal intensive care unit was withdrawal of life-sustaining support. When death is imminent or medical care is considered futile, the approach is thought to provide a peaceful, controlled setting. Significant increase in withholding of care suggests improved recognition of medical futility and desire to provide a peaceful death.

Principles versus procedures in making health care coverage decisions: addressing inevitable conflicts

It has been suggested that focusing on procedures when setting priorities for health care avoids the conflicts that arise when attempting to agree on principles. A prominent example of this approach is "accountability for reasonableness." We will argue that the same problem arises with procedural accounts; reasonable people will disagree about central elements in the process. We consider the procedural condition of appeal process and three examples of conflicts over coverage decisions: a patients' rights law in Norway, health technologies coverage recommendations in the UK, and care withheld by HMOs in the US. In each case a process is at the center of controversy, illustrating the difficulties in establishing procedures that are widely accepted as legitimate. Further work must be done in developing procedural frameworks.

Vote on Elder Justice Act Expected by Year-End

Mitchel L. Zoler is with the Philadelphia bureau of Elsevier Global Medical News. PHILADELPHIA — The Elder Justice Act should finally reach a floor vote in the House and Senate in the current Congress, Robert B. Blancato said at a conference sponsored by the American Society for Aging. The Elder Justice Act was introduced in February 2003 and, in each of the two sessions since then, versions of the legislation were introduced in the Senate and House, with a bill clearing the Senate Finance Committee. Still, the measure never got through the full Senate or House, although it appears set for a Senate vote by the end of this year, according to Mr. Blancato, a lobbyist and consultant and the national coordinator of the Elder Justice Coalition in Washington. “It's been a little hard to convince people” that elder abuse is a problem, he said in an interview. “There is still an element of denial in Washington about elderly abuse, neglect, and exploitation.” Despite what Mr. Blancato calls a “growing problem of elder abuse, neglect, and exploitation,” less than 2% of what the Federal government spends on abuse prevention in the United States goes to fight elder abuse, Mr. Blancato said. Elder abuse, neglect, and exploitation manifest as beatings, abandonment, financial exploitation, sexual assault, and the withholding of care. The Elder Justice Act is designed to create the infrastructure and resources to prevent, detect, treat, understand, intervene in, and prosecute elder abuse, neglect, and exploitation. The bipartisan legislative effort, which is sponsored by six senators and 43 representatives of Congress, calls for several initiatives that will attempt to achieve these goals, including the following: ▸ The creation of Offices of Elder Justice at the Departments of Justice and Health and Human Services. ▸ The creation of an Elder Justice Resource Center and Library. ▸ The funding of Centers of Excellence to enhance research, including studies to track the incidence and prevalence of elder abuse in the United States. ▸ The development of new ways to detect elder abuse, neglect, and exploitation. Additional interventions that would be created by the act include funding for adult protective services, better uniformity of services for the abused elderly throughout the United States, dedicated funding for training, and more thorough identification and reporting of abuse episodes. Among other things, supporters of the legislation say it would include grants and tax incentives to bolster recruitment in long-term care. It also would give incentives for workers who remain in the field for more than five years to help address retention issues. One provision also seeks continuing training and development. The American Medical Directors Association has said it is still reviewing the legislation. Current statistics on the prevalence and incidence of elder abuse, neglect, and exploitation are uncertain because they require that episodes be reported to appropriate authorities. Nevertheless, the National Center on Elder Abuse estimates that 3%–5% of the elderly population has been abused. Experts estimate about that about 5 million cases of elderly financial abuse occur each year. And the rate of reported episodes of all types of abuse is rising as well. There was a 19% increase in reported cases during 2003–2004, according to Mr. Blancato.

End-of-life decisions: a cohort study of the withdrawal of all active treatment in intensive care units in the United Kingdom

To describe the epidemiology of active treatment withdrawal in a nationally representative cohort of intensive care units (ICUs) focusing on between-unit differences. Cohort study in 127 adult general ICUs in England, Wales and Northern Ireland, 1995 to 2001. 118,199 adult admissions to ICUs. The decision to withdraw all active treatment was made for 11,694 of 118,199 patients (9.9%). There were a total of 36,397 deaths (30.8%) before discharge from hospital, and 11,586 (31.8%) of these occurred after the decision to withdraw active treatment, with no change over time (p=0.54). Considerable variation existed between units regarding the percentage of ICU deaths that occurred after the decision to withdraw active treatment (1.7-96.1%). Median time to death after the decision to withdraw active treatment was 2.4 h; 8% survived more than 24 h. After multilevel modelling, the factors independently associated with the decision to withdraw active treatment were: older age, pre-existing severe medical conditions, emergency surgery or medical admission, cardiopulmonary resuscitation in the 24 h prior to admission, and ventilation or sedation/paralysis in the first 24 h after admission. Substantial between unit variability remained after accounting for case-mix differences in admissions. Although we were unable to examine partial withdrawal or withholding of care in this study, we found that the withdrawal of all active treatment is widespread in ICUs in the United Kingdom. There was little change in this practice over the period examined. However, there was considerable variation by unit, even after accounting for patient factors and differences in size and type of ICU, suggesting improved guidelines may be useful to facilitate uniform decision making.

Awareness and use of advance directives in the spinal cord injured population.

Research was conducted through the use of semi-structured patient interviews. Subjects were recruited through the Saskatchewan branch of the Canadian Paraplegic Association (CPA) and through the clinical practice of the primary investigator. A total of twenty-one patients were interviewed. A qualitative outcome analysis was performed on information collected. Advance directives (or living wills) serve to communicate the wishes of individuals in the event that they should no longer be capable of making those wishes known. This can include directives on issues such as resuscitation status and withdrawal or withholding of care. The goal of this study was to determine the present level of knowledge and interest of spinal cord injured (SCI) patients on the topic of advance directives, and to determine what specific issues they felt need to be addressed in such a document in this population. The study was performed in Saskatoon, Saskatchewan, Canada. Although design and analysis were done in a tertiary care centre, the interviews themselves were conducted in the homes of the participants. The results show that spinal cord injured patients have some knowledge of what is involved in the preparation of an advance directive and that they feel these documents are important. A relatively small percentage have completed their own written directives but a large percentage planned to do so after completing this survey. There is some disagreement about when after the injury the topic should first be discussed. Information about medical conditions which are more likely to arise following a SCI should be included in an SCI-specific document. A template for an SCI-specific living will (the SCIAD) is provided.

Advance directives: from the perspective of the patient and the physician.

American physicians and patients share some common ground in their perspectives on advance directives. The majority in both groups strongly endorse the use of these documents. Both groups believe it is the physician's responsibility to initiate the discussion about advance directives. However, a gap between the two perspectives can be defined. In end-of-life decision making, physicians balance the ethical principle of patient autonomy with other principles such as appropriate withholding of care in the setting of futility. Patients' preferences for end-of-life care are most influenced by expected outcomes. Physicians tend to be selective in their indications for initiating a discussion about advance directives, according to clinical factors. In contrast, most patients want to discuss advance directives with their physician under all circumstances.

The Risk of Redefining Rationing

<h3>To the Editor.</h3> —I respond to a problem in the article by Drs Hadorn and Brook on definition of terms and "The Health Care Resource Allocation Debate."¹Hadorn and Brook state that the "use of the word rationing has clearly transcended its original meaning." I agree that clear definition of terms is necessary for discussion participants. I disagree with altering the meaning of clearly defined terms, particularly when misconceptions are perpetuated. The authors first review some erroneous concepts about rationing and give examples of inappropriate use of the word rationing such as "deliberate curtailment" and "rationing through inconvenience." They then redefine<i>rationing</i>as "toleration of inequitable access to beneficial services" with the modification "withholding of care duly deemed necessary." The remainder of the article answers some of the necessary questions about who they think should be given the authority to make the subjective decisions on equity, benefit, and necessity.

Withdrawing and withholding treatment in intensive care

A major goal of intensive care units should be to provide an environment in which death may occur with dignity if cure is impossible. The key issues in providing such an environment are the establishment of consensus that cure is impossible, and the provision of a resource person who has been a major participant in efforts to cure the patient. This person leads discussion with the patient or relatives, seeking concurrence rather than permission when the withdrawing or withholding of care is under consideration. We present problems which may arise in facilitating a dignified demise, and a practical approach to these problems.