Consent Issues in the Management of Acute Ischemic Stroke

This position statement briefly reviews the principle of informed consent, the elements of decisional capacity, and how acute stroke may affect this capacity. It further reviews the role of surrogate decision-making, including advance directives, next of kin, physician orders for life-sustaining treatment, and guardianship. In some cases of acute stroke in which the patient lacks decisional capacity and no advance directives or surrogates are available, consent to treatment may be presumed. The document describes the rationale for this position and various considerations regarding its application to IV thrombolysis, neuroendovascular intervention, decompressive craniectomy, and pediatric stroke. The document also reviews consent issues in acute stroke research.

203 - Decisional capacity and advance care planning in older people who are incarcerated

There is a growing number of older people incarcerated across the United States. With a population of greater than 300 million, the US has 5% of the world’s population, yet incarcerates 25% of the world’s prisoners. From 2000 to 2005, the percentage of prisoners in federal and state correctional institutions who were 55 and older increased by 33%. According to the American Civil Liberties Union older prison population has climbed 1300% since the 1980s, with 125,000 inmates aged 55 or older incarcerated.Correctional facilities are the largest mental health institutions with 1 out of 5 individuals with serious mental health or substance use disorders. These facilities lack the capacity to provide long-term care for those with severe physical or mental health disorders even in the most ideal circumstances.Individuals within the criminal justice system have a higher burden of chronic physical and health disorders and have a lower life expectancy.Health care decision making is one area where patients in custody have autonomy in discussing advance directives, substitute decision makers and medical decision making. However, prisoners are at risk of suboptimal care, unmet palliative and end of life care needs, and lacking or inappropriate surrogates. Without documentation of advance directives or surrogates there are bureaucratic, practical, and legal barriers particularly for those without family or friends. In addition, some individuals involved in the correctional system’s only surviving family members may also be their victims, thus have a conflict of interest.This presentation will explore capacity and substitute decision making for individuals involved in the criminal justice system who have severe mental and physical health disorders. A case description will be used to illustrate a decision-making tree for patients who are incarcerated. As the world population continues to age, the number of older people who are incarcerated and unable to make healthcare decisions will continue to increase. In this special population, correctional system clinicians and providers need to be familiar with strategies to address the need for advance care planning before older people lose decisional capacity.

Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders

Background Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. Methods We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death. Results Support for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics. Conclusions Findings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.

Clinical Issues

All seriously ill persons should complete advance directives specifying indications for limiting future provision of food and fluids. AD’s for SED specify When oral intake is to be limited and What limitations are to be imposed. Two categories include: (1) withholding all assisted oral intake from a person who has lost decision-making capacity, and previously indicated her wish to not receive any assisted feeding, and (2) Comfort Feeding Only (CFO) which involves providing as much or as little food and fluid as the patient seems to desire. CFO has three subcategories: (a) “Self-feeding only”—limiting oral intake to what the patient is able to self-administer. (b) Both “self-feeding” and “caregiver assisted-feeding” in whatever amount the patient enjoys. (c) “Minimum Comfort Feeding Only” is a modification for those who had expressed a desire to SED but lost decisional capacity before implementation, but now seem to desire food or fluid.

Ethics Consultations in Neuro-Oncology

Background Management of patients with brain tumors can lead to ethical and decisional dilemmas. The aim of this study was to characterize ethical conflicts encountered in neuro-oncologic patients. Methods Retrospective review of ethics consultations performed upon patients with primary and metastatic brain tumors at a tertiary cancer center. An ethics consultation database was examined to characterize ethical conflicts, contextual factors, and interventions by the consultation team. Results Fifty consultations were reviewed; 28(56%) patients were women, median age 54 (range 4-86); 27(54%) patients had a primary central nervous system malignancy; 20(40%) had brain metastasis. At the time of consultations, 41(82%) patients lacked decisional capacity; 48(96%) had a designated surrogate decision maker; 3(6%) had an advance directive outlining wishes regarding medical treatment; 12(24%) had a Do Not Attempt Resuscitation (DNAR) order. Ethical conflicts centered upon management of end-of-life (EOL) circumstances in 37(72%) of cases; of these, 30 did not have decisional capacity. The most common ethical issues were DNAR status, surrogate decision making, and request for non-beneficial treatment. Consultants resolved conflicts by facilitating decision making for incapacitated patients in 30(60%) cases, communication between conflicting parties in 10(20%), and re-articulation of patients’ previously stated wishes in 6(12%). Conclusions Decisional capacity at EOL represents the primary ethical challenge in care of neuro-oncologic patients. Incomplete awareness among surrogate decision makers of patients’ prognosis and preferences contributes to communication gaps and dilemmas. Early facilitation of communication between patients, caregivers, and medical providers may prevent or mitigate conflicts and allow enactment of patients’ goals and values.

Research in Adults with Diminished Capacity

Informed consent is often identified as a condition of ethical research. Therefore, ethical challenges arise when conducting research with adults who lack the capacity to provide informed consent. In this chapter, the authors consider these challenges using two principal cases: adults with dementia and adults with acute, emergent health conditions. As this pair of cases shows, decisional capacity can be “diminished” in many ways, and a number of strategies are available to address diminished capacity. In this chapter, the authors highlight surrogate consent and the partial-involvement strategies of assent and dissent and note additional protections afforded to these vulnerable populations.