This article will focus on the following objectives specific to end-of-life care for professional case management:
Discuss recent industry topics that influence care processes.
Explore the opioid epidemic's impact on pain management.
Identify terms associated with end-of-life and life-limiting care.
Understand types of advance directives and care defining tools.
Define the purpose of psychiatric advance directives.
Discuss the shifting diagnostic face.
Discuss how inclusion manifests for the lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) population.
Explore challenges working through adolescent decision making and treatment.
Review regulation and reimbursement shifts across the industry.
Identify the use of artificial intelligence.
Discuss the value of ethics committees in health care organizations.
Define the Four Cs of Care Considerations.
Identify ethical principles for consideration by the workforce.
As artificial intelligence (AI) spreads across clinical specialties, its potential to revolutionise health care at the individual and population levels has placed it alongside genomics as one of the frontiers in medicine. The promise that AI could help health systems and clinicians optimise patient care in core domains of diagnosis, prognosis, and treatment drives widespread interest and investment.
OBJECTIVES: Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators.
DESIGN: We conducted a retrospective observational study.
SETTING AND PARTICIPANTS: We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked.
MEASURES: We used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks.
RESULTS: In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%.
CONCLUSIONS AND IMPLICATIONS: Our study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.
Evaluating a patient with brain injury (traumatic or not traumatic) is challenging. Potential outcomes are often unclear as the manifestations of brain injuries evolve over time and can result in dynamic changes in conciousness. This can create confusion for prognostication and clinnical decision making. Appropriate classification of disorders of conciousness (DOC) involves a careful assessment of neurological function at the bedside and an understanding of the expected time frame during which neurological function can evolve. Although neurological assessment and diagnosis is the role of a neurologist, it is important for palliative care clinicians to understand the diagnosis so they can appropriately educate and counsel families. This Fast Fact aims to help clinicians understand the terminology around DOC. Prognosis in DOC will be discussed in a future Fast Fact.
Although death by neurologic criteria (brain death) is legally recognized throughout the United States, state laws and clinical practice vary concerning three key issues: (1) the medical standards used to determine death by neurologic criteria, (2) management of family objections before determination of death by neurologic criteria, and (3) management of religious objections to declaration of death by neurologic criteria. The American Academy of Neurology and other medical stakeholder organizations involved in the determination of death by neurologic criteria have undertaken concerted action to address variation in clinical practice in order to ensure the integrity of brain death determination. To complement this effort, state policymakers must revise legislation on the use of neurologic criteria to declare death. We review the legal history and current laws regarding neurologic criteria to declare death and offer proposed revisions to the Uniform Determination of Death Act (UDDA) and the rationale for these recommendations.
Palliative care is seeing cancer patients earlier in the disease trajectory with a multitude of chronic issues. Chronic non-malignant pain (CNMP) in cancer patients is under-studied. In this prospective study, we examined the prevalence and management of CNMP in cancer patients seen at our supportive care clinic for consultation. We systematically characterized each pain type with the Brief Pain Inventory (BPI) and documented current treatments. The attending physician made the pain diagnoses according to the International Association for the Study of Pain (IASP) task force classification. Among 200 patients (mean age 60 years, 69% metastatic disease, 1-year survival of 77%), the median number of pain diagnosis was 2 (IQR 1-2); 67 (34%, 95% CI 28-41%) had a diagnosis of CNMP; 133 (67%) had cancer-related pain; and 52 (26%) had treatment-related pain. In total, 12/31 (39%) patients with only CNMP and 21/36 (58%) patients with CNMP and other pain diagnoses were on opioids. There was a total of 94 CNMP diagnoses among 67 patients, including 37 (39%) osteoarthritis and 20 (21%) lower back pain; 30 (32%) were treated with opioids. In summary, CNMP was common in the timely palliative care setting and many patients were on opioids. Our findings highlight the need to develop clinical guidelines for CNMP in cancer patients to standardize its management.
INTRODUCTION: In observational studies with mortality endpoints, one needs to consider how to account for subjects whose interventions appear to be part of 'end-of-life' care.
OBJECTIVE: The objective of this study was to develop a diagnostic predictive model to identify those in end-of-life care at the time of a drug exposure.
METHODS: We used data from four administrative claims datasets from 2000 to 2017. The index date was the date of the first prescription for the last new drug subjects received during their observation period. The outcome of end-of-life care was determined by the presence of one or more codes indicating terminal or hospice care. Models were developed using regularized logistic regression. Internal validation was through examination of the area under the receiver operating characteristic curve (AUC) and through model calibration in a 25% subset of the data held back from model training. External validation was through examination of the AUC after applying the model learned on one dataset to the three other datasets.
RESULTS: The models showed excellent performance characteristics. Internal validation resulted in AUCs ranging from 0.918 (95% confidence interval [CI] 0.905-0.930) to 0.983 (95% CI 0.978-0.987) for the four different datasets. Calibration results were also very good, with slopes near unity. External validation also produced very good to excellent performance metrics, with AUCs ranging from 0.840 (95% CI 0.834-0.846) to 0.956 (95% CI 0.952-0.960).
CONCLUSION: These results show that developing diagnostic predictive models for determining subjects in end-of-life care at the time of a drug treatment is possible and may improve the validity of the risk profile for those treatments.
Medical treatment reduces diagnostic risk, increases therapeutic risk and lowers the probability of death. This paper analyzes the effects of initial health, wealth and the probability of death on the propensity to treat under diagnostic and therapeutic risk. It shows that treatment propensity increases with the probability of death, but can decrease with the severity of illness. The effect of wealth depends on the cross-derivative of the utility function with respect to health and wealth. These results have implications for treatment decisions at the end of life.
The diagnosis of brain death (BD) is legally and medically accepted. Recently, several high-profile cases have led to discussions regarding the integrity of current criteria, and many physiologic problems have been identified to support the necessity for their reevaluation. These include a global variability of the criteria, the suggestion of a clinical “hierarchy,” and the resultant approximation of BD. Further ambiguity has been exposed through case reports of reversible BD, and an inconsistent understanding from physicians who are viewed as experts in this domain. Meeting BD criteria clearly does not equate to a physiologic “death” of the brain, and a greater community perspective should be considered as the dialogue moves forward.
In 2010, the American Academy of Neurology (AAN) published updated official guidelines for specific practices involved in the determination of death by neurologic criteria for adult patients, otherwise known as brain death. Most states, however, do not have laws mandating the standard adoption of the AAN guidelines. The responsibilities for creating and implementing brain death determination policies thus falls on individual hospitals. As a result, significant variability in practice exists between hospitals and even between providers. This review highlights the ways in which and the extent to which adult brain death determination varies across the US, while also making the case that such persistent levels of heterogeneity call for improvements in standardizing training in brain death determination.
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
Despite the popularity, success, and growth of programs of organ donation after the circulatory determination of death (DCDD), a long-standing controversy persists over whether the organ donor is truly dead at the moment physicians declare death, usually following five minutes of circulatory and respiratory arrest. Advocates of the prevailing death determination standard claim that the donor is dead when declared because of permanent cessation of respiration and circulation. Critics of this standard argue that while the cessation of respiration and circulation may be permanent, it may not be irreversible at the moment death is declared because, if cardiopulmonary resuscitation were performed, it might succeed. And because irreversibility of cessation of respiration and circulation is required by both the statute and the biological concept of death, the donor must be alive. Who is correct?
Making two related distinctions clarifies the cause of the disagreement over whether the DCDD donor is dead and points to a possible resolution. First, in a determination of death, there is an important distinction between the permanent and the irreversible cessation of circulation and respiration—two associated phenomena that are often confounded. Second, there is an important distinction between the medical practice standard for death determination, in which physicians certify the permanent cessation of vital functions as sufficient for death declaration, and the underlying biological concept of death that requires the irreversible cessation of vital functions because death, by definition, is an irreversible event.
Ce numéro comprend les articles suivants : brain death at fifty: exploring consensus, controversy, and contexts ; would a reasonable person now accept the 1968 Harvard brain death report? A short history of brain death ; a path not taken: beecher, brain death, and the aims of medicine ; Beecher dépassé: fifty years of determining death, legally ; a conceptual justification for brain death ; brain death: a conclusion in search of a justification ; conceptual issues in DCDD donor death determination ; DCDD ddonors are not dead ; uncontrolled DCD: when should we stop trying to save the patient and focus on saving the organs? ; a defense of the dead donor rule ; the dead donor rule as policy indoctrination ; the public's right to accurate and transparent information about brain death and organ transplantation ; brain death and the law: hard cases and legal challenges ; rethinking brain death as a legal fiction: is the terminology the problem? ; respecting choice in definitions of death ; imposing death: religious witness on brain death ; death: an evolving, normative concept ; lessons from the case of Jahi McMath ; the case of Jahi McMath: a neurologist's view ; revisiting death: implicit bias and the case of Jahi MMath.
The organ transplantation enterprise is morally flawed. "Brain-dead" donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed-or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death-unresponsiveness, brainstem areflexia, and apnea-are still living, from a physiological perspective. Therefore, removing vital organs from a heart-beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement.
When The Ad Hoc Committee of Harvard Medical School to Examine the Definition of Brain Death began meeting in 1967, I was a graduate student, with committee member Ralph Potter and committee chair Henry Beecher as my mentors. The question of when to stop life support on a severely compromised patient was not clearly differentiated from the question of when someone was dead. A serious clinical problem arose when physicians realized that a patient's condition was hopeless but life support perpetuated body function. Thus, the committee stated that its first purpose was to deal with the burdens on patients and families as well as on hospitals and on patients needing hospital beds occupied by comatose patients. They intuited the strategy of "defining" these patients as dead, thus legitimating treatment stoppage. They noted that this would also serve a second purpose. Although the dead donor rule had not yet been clearly articulated, they claimed that defining patients as dead would also address controversy over obtaining organs for transplant. My mentors' discussions related to my interest in the intersection between questions primarily of medical fact (When has a human brain irreversibly ceased functioning?) and nonmedical questions of social policy (Should we treat individuals with dead brains and beating hearts as dead humans?). It quickly became clear that most committee members did not appreciate the interplay of these questions.
The determination of death by neurological criteria-"brain death"-has long been legally established as death in all U.S. jurisdictions. Moreover, the consequences of determining brain death have been clear. Except for organ donation and in a few rare and narrow cases, clinicians withdraw physiological support shortly after determining brain death. Until recently, there has been almost zero action in U.S. legislatures, courts, or agencies either to eliminate or to change the legal status of brain death. Despite ongoing academic debates, the law concerning brain death has remained stable for decades. However, since the Jahi McMath case in 2013, this legal certainty has been increasingly challenged. Over the past five years, more families have been emboldened to translate their concerns into legal claims challenging traditional brain death rules. While novel, these claims are not frivolous. Therefore, it is important to understand them so that we can address them most effectively.
From the start, I followed the case of Jahi McMath with great interest. In December 2013, she clearly fulfilled the diagnostic criteria for brain death. As a neurologist with a special interest in chronic brain death, I was not surprised that, after she was flown to New Jersey, where she became statutorily resurrected and was treated as a comatose patient, Jahi's condition quickly improved. In 2014, her family reported that she sometimes responded to simple motor commands. I shared the general skepticism regarding these reports, assuming that the family was in denial and was misinterpreting spinal myoclonus (a rapid, involuntary twitch generated by the spinal cord) as volitional. The family had noticed that when Jahi's heart rate was above eighty beats per minute, she was more likely to respond, as though the heart rate reflected some sort of inner level of arousal. So they began to make video recordings. I have been privileged to be entrusted with copies of these recordings, forty-eight of which proved suitable for assessing alleged responsiveness. All have been certified by a forensic video expert as unaltered. The first thing that struck me was that the great majority of the alleged responses were not spinal myoclonus. In fact, they did not resemble any type of spontaneous, involuntary movement described in patients paralyzed from high spinal cord lesions.
Since the 1960s, organ procurement policies have relied on the boundary of death-advertised as though it were a factual, value-free, and unobjectionable event-to foster organ donation while minimizing controversy. Death determination, however, involves both discoveries of facts and events and decisions about their meaning (whether the facts and events are relevant to establish a vital status), the latter being subjected to legitimate disagreements requiring deliberation. By revisiting the historical origin of the dead donor rule, including some events that took place in France prior to the report by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, I want to recall that those who first promoted the DDR did not take into account any scientific rationale to support the new proposed criteria to determine death. Rather, through a process of factual re-semantization, they authorized themselves to decide about the meaning of death in order to implicitly prioritize the interests of organ recipients over those of dying people.
Frailty is a complex age-related clinical condition characterised by a decline in physiological capacity across several organ systems, with a resultant increased susceptibility to stressors. Because of the heterogeneity of frailty in clinical presentation, it is important to have effective strategies for the delivery of care that range across the continuum of frailty severity. In clinical practice, we should do what works, starting with frailty screening, case identification, and management of frailty. This process is unarguably difficult given the absence of an adequate evidence base for individual and health-system interventions to manage frailty. We advocate change towards individually tailored interventions that preserve an individual's independence, physical function, and cognition. This change can be addressed by promoting the recognition of frailty, furthering advancements in evidence-based treatment options, and identifying cost-effective care delivery strategies.