OBJECTIVES: There is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.
METHODS: We provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.
RESULTS: Different models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.
CONCLUSIONS: ACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.
BACKGROUND: Prior to national spread, the Department of Veterans Affairs implemented a pilot of the life-sustaining treatment decisions initiative (LSTDI) to promote proactive goals of care conversations (GoCC) with seriously ill patients, including policy and practice standards, an electronic documentation template and order set, and implementation support.
AIM: To describe a 2-year pilot of the LSTDI at 4 demonstration sites.
DESIGN: Prospective observational study.
SETTING/PARTICIPANTS: A total of 6664 patients who had at least one GoCC.
RESULTS: Descriptive statistics characterized patient demographics, goals of care, LST decisions, and risk of hospitalization or mortality among patients with at least one GoCC. Participants were on average 71.4 years old, 93.2% male, 87.1% white, and 64.7% urban; 27.3% died by the end of the pilot period. Fifteen percent lacked decision-making capacity (DMC). Nonmutually exclusive goals included to be cured (7.6%), to prolong life (34%), to improve/maintain quality of life (61.5%), to be comfortable (53%), to obtain support for family/caregiver (8.4%), to achieve life goals (2.1%), and other (10.5%). Many GoCCs resulted in a do not resuscitate (DNR) order (58.8%). Patients without DMC were more likely to have comfort-oriented goals (77.3% vs 48.8%) and a DNR (84% vs 52.6%). Chart abstraction supported content validity of GoCC documentation.
CONCLUSION: The pilot demonstrated that standardizing practices for eliciting and documenting GoCCs resulted in customized documentation of goals of care and LST decisions of a large number of seriously ill patients and established the feasibility of spreading standardized practices throughout a large integrated health care system.
CONTEXT: Few studies have examined how clinicians assess decision-making capacity for research in the last weeks of life.
OBJECTIVE: We examined the decision-making capacity for participation in a research study and its association with clinician impression and delirium among cancer patients with days to weeks of life expectancy.
METHODS: Patients admitted to our Palliative and Supportive Care Unit (PSCU) were approached for a prospective observational study. We assessed for their decision-making capacity based on clinical impression of physician and nurse, Memorial Delirium Assessment Scale (MDAS) and the MacArthur Competency Assessment Tool for Clinical Research (MacCAT-CR).
RESULTS: Among the 206 patients, 131 patients (64%) did not require MacCAT-CR assessment because they were overtly delirious or unresponsive; 37 (18%) patients were alert but did not complete the MacCAT-CR assessment for other reasons and 38 patients (18%) completed the MacCAT-CR assessment. Among these 38 patients, 5 (13%) were incapable and had normal albeit significantly higher MDAS scores compared to those who were capable (1.8 vs. 4.2, P=0.002). Compared against MacCAT-CR and MDAS, the overall agreement with capacity assessment with a clinician was 88% (95% CI 82-93%) for physicians and 90% (95% CI 82-94%) for nurses. The area-under the receiver-operating characteristics curve was 0.93 (95% CI 0.88-0.96) for physicians and 0.94 (95% CI 0.89-0.97) for nurses, suggesting high discrimination.
CONCLUSION: A majority of patients in the PSCU lacked decision-making capacity for participation in clinical research. Clinician impression had high accuracy. Few patients with normal MDAS were found to be incapable with MacCAT-CR assessment.
In the September issue of the American Journal of Bioethics, Kious and Battin present their arguments on why physician aid-in-dying (PAD) due to severe suffering should also be allowed in non-terminal psychiatric diseases. The authors argue that a crucial aspect of PAD is the assessment of the decision-making capacity. Furthermore, they elaborate on the incompatibility of current PAD regulations and compulsory treatment because of suicidality, emphasizing differences between European, Canadian, and US-American policies. They differentiate between possible pathways the discussion about laws and policies concerning medically assisted dying could lead to. Firstly, keep the status quo, requiring a terminal illness, without considering the suffering caused by mental illness. Secondly, a change toward a partial opening of PAD for people with mental illness if their decision-making capacity is intact. This approach would require a change in policies regarding assisted dying while at the same time changing the involuntary civil commitment practices. The third approach devises a metric to measure suffering. While allowing patients who reach the threshold of unbearable suffering to access PAD, people with lower scores of suffering would fall under the policies of involuntary civil commitment and treatment. This third approach poses difficult questions concerning the nature of an instrument to determine suffering, the definition of suffering and its thresholds, and about the authority of the gatekeeper determining whether a person qualifies for PAD.
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Surrogate health care decision making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, health care providers, and other members of the health care team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants is sought to assist with complex health care decision making. Clinical ethics consultation is designed to provide a more objective “outside” opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr K., a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and who lacks decisional capacity in regard to his own treatment decision making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.
Patients' right to decide what happens to their bodies, especially around the end of life, is enshrined in legislation across the world, but questions often arise about whether a patient is capable of meaningfully participating in such decisions. Because of uncertainties about capacity, care providers and administrative agencies often must decide whether to honor, or even to elicit, patients' wishes. General decision-making capacity has been well studied, but few clear protocols exist for ascertaining capacity at the end of life. Without clear guidelines about how to assess capacity, medical staff may ignore assessment and operate from invalid assumptions. In the interests of protecting patients' agency, we propose a straightforward protocol for assessing capacity to make decisions about end-of-life interventions.
In an opinion paper published in this journal, Dr. Ely makes several statements on the legislation and clinical practice with regard to end-of-life care and organ donation in countries with a euthanasia law, that are not only untrue, but involve serious accusations, including the suggestion that physicians might no longer be on the side of healing, and murder. He insinuates that, now or in the near future, incapacitated patients could or will be euthanized for the purpose of organ harvesting, like they were used for protein food in some obscure science fiction novel. It will be clear to most readers that what Dr. Ely describes as imminent practice is indeed fiction.
OBJECTIVE: Despite the clinical, ethical, and legal magnitude of end-of-life decision-making, the capacity of terminally ill patients to make the medical decisions they often face is largely unknown. In practice, clinicians are responsible for determining when their patients are no longer competent to make treatment decisions, yet the accuracy of these assessments is unclear. The purpose of this study was to explore decision-making capacity and its assessment in terminally ill cancer patients.
METHODS: Fifty-five patients with advanced cancer receiving inpatient palliative care and 50 healthy adults were administered the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) to evaluate decision-making capacity with regard to the four most commonly used legal standards: Choice, Understanding, Appreciation, and Reasoning. Participants made a hypothetical treatment decision about whether to accept artificial nutrition and hydration for treatment of cachexia. Participants' physicians independently rated their decision-making capacity.
RESULTS: Terminally ill participants were significantly more impaired than healthy adults on all MacCAT-T subscales. Most terminally ill participants were able to express a treatment choice (85.7%), but impairment was common on the Understanding (44.2%), Appreciation (49.0%), and Reasoning (85.4%) subscales. Agreement between physician-rated capacity and performance on the MacCAT-T subscales was poor.
CONCLUSIONS: The use of the MacCAT-T revealed high rates of decisional impairment in terminally ill participants. Participants' physicians infrequently detected impairment identified by the MacCAT-T. The findings from the present study reinforce the need for engagement in advance care planning for patients with advanced cancer.
The goal of this Fast fact is to explain the role of a surrogate decision maker, how to guide patients in the selection of a surrogate, and how decision making proceeds if the patient has never selected a surrogate before becoming incapacitated.
Medicine aims to relieve patient suffering and cure illness. To relieve suffering is the heart of what doctors do. However, respect for individual autonomy and self-determination are fundamental principles in Western medical ethics and decision-making, often expressed as a desire for control over the timing and manner of death. Patients who become demented often formulate advance euthanasia and assisted suicide directives. Dealing with such request is quite complex because of the specific medical and conflicting ethical questions they raise. Some specific medical and ethical issues arise regarding these substantive requirements when evaluating the euthanasia request of a person suffering from dementia. In jurisdictions that allow euthanasia, the most fundamental prerequisite for a person to make autonomous decisions is capacity. Whether anyone with moderate or severe dementia, and even some with mild dementia, could be deemed to be competent by these criteria is debatable, but during the course of their disease people with dementia sooner or later lose their capacity to make self-determined decisions.
In a landmark judgment in the English Court of Protection, the judge (Charles J) found it to be in the best interests of a minimally conscious patient for clinically assisted nutrition and hydration (CANH) to be withdrawn, with the inevitable consequence that the patient would die. In making this judgment, it was accepted that the patient's level of consciousness - if CANH were continued and rehabilitation provided - might improve, and that he might become capable of expressing emotions and making simple choices. The decision to withdraw treatment relied on a best interests decision, which gave great weight to the patient's past wishes, feelings, values and beliefs, and brought a 'holistic' approach to understanding what this particular patient would have wanted. We draw on our own experience of supporting families, advocating for patients and training healthcare professionals in similar situations to consider the implications of the published judgment for policy and practice with patients in prolonged disorders of consciousness and their families.