Assessing decision-making capacity at end of life

2014 ◽  
Vol 36 (4) ◽  
pp. 392-397 ◽  
Author(s):  
Elissa Kolva ◽  
Barry Rosenfeld ◽  
Robert Brescia ◽  
Christopher Comfort
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Making Capacity

scholarly journals Transitions in decision-making authority at the end of life: a problem of law, ethics and practice in deceased donation

2020 ◽  
pp. medethics-2020-106572
Author(s):  
Shih-Ning Then ◽  
Dominique E Martin
Keyword(s):  
Decision Making ◽  
Organ Donation ◽  
End Of Life ◽  
Decision Maker ◽  
Legal Authority ◽  
Time Of Death ◽  
Medical Decisions ◽  
Ethical Concerns ◽  
Decision Making Capacity ◽  
Practical Implications

Where a person is unable to make medical decisions for themselves, law and practice allows others to make decisions on their behalf. This is common at the end of a person’s life where decision-making capacity is often lost. A further, and separate, decision that is often considered at the time of death (and often preceding death) is whether the person wanted to act as an organ or tissue donor. However, in some jurisdictions, the lawful decision-maker for the donation decision (the ‘donation decision-maker’) is different from the person who was granted decision-making authority for medical decisions during the person’s life. To date, little attention has been given in the literature to the ethical concerns and practical problems that arise where this shift in legal authority occurs. Such a change in decision-making authority is particularly problematic where premortem measures are suggested to maximise the chances of a successful organ donation. This paper examines this shift in decision-making authority and discusses the legal, ethical and practical implications of such frameworks.

Advance Care Planning for Persons with Intellectual Disabilities

GeroPsych ◽  
2018 ◽  
Vol 31 (2) ◽  
pp. 87-95 ◽  
Author(s):  
Monika T. Wicki
Keyword(s):  
Decision Making ◽  
Intellectual Disabilities ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
End Of Life Decisions ◽  
Percent Agreement ◽  
Decision Making Capacity ◽  
Advance Care ◽  
Life Decisions

Abstract. As people live longer, they become more likely to die from prolonged, incurable, chronic illnesses occurring more frequently in old age. This study explores the usefulness, quality, and reliability of documented advance care planning interviews to determine the decision-making capacity of persons with intellectual disabilities (IDs). A volunteer sample of 60 persons rated the capacity to consent to treatment of four persons deciding on two end-of-life decisions. Sensitivity, specificity, and percent agreement were calculated. Interrater reliability was assessed using Fleiss’ κ and Krippendorff’s α. A Yates’ corrected χ2 was used to analyze differences in ratings between groups of raters. The sensitivity value was 62%; the specificity value was 95%. The percent agreement for all participants was 70%, Fleiss’ κ was 0.396, and Krippendorff’s α was 0.395. Of the participants, 72 found documented advance care planning discussions useful for diagnosing the decision-making capacity of people with IDs. The documented interviews helped to identify those persons with IDs who had the decision-making capacity. Documented interviews on end-of-life decisions could make a valuable contribution to fostering their self-determination in end-of-life issues.

Decision-making capacity at the end of life

2014 ◽  
Vol 23 (3) ◽  
pp. 133-136 ◽  
Author(s):  
Alyson L. Kepple ◽  
Pierre N. Azzam ◽  
Priya Gopalan ◽  
Robert M. Arnold
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Making Capacity

The Hands of Time

2021 ◽  
pp. 104990912110242
Author(s):  
Ariane Lewis
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Dynamics ◽  
Goals Of Care ◽  
Decision Making Capacity

When making decisions about goals-of-care for a patient who lacks decision-making capacity, surrogates sometimes have internal disagreements, particularly if there are complicated family dynamics. Here, I describe the evolution of end-of-life discussions for a patient who had a catastrophic stroke amongst a family who had preexisting discord.

scholarly journals 458 - End-of-life decision-making capacity in an elderly patient with schizophrenia and terminal cancer

2020 ◽  
Vol 32 (S1) ◽  
pp. 179-179
Author(s):  
C Kotzé ◽  
JL Roos
Keyword(s):  
Decision Making ◽  
Mental Illness ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Decision Making Capacity ◽  
Advance Care ◽  
End Of Life Decision

Medical practitioners are confronted on a daily basis with decisions about patients’ capacity to consent to interventions. To address some of the pertinent issues with these assessments, the end -of-life decision-making capacity in a 72-year old lady with treatment resistant schizophrenia and terminal cancer will be discussed.In the case discussed there were differences in opinion about the patients decision-making capacity. In light of this, the role of the treating clinician and importance of health-related values in capacity assessment are highlighted. It is recommended that the focus of these assessments can rather be on practical outcomes, especially when capacity issues arise. This implies that the decision-making capacity of the patient is only practically important when the treatment team is willing to proceed against the patient’s wishes. This shifts the focus from a potentially difficult assessment to the simpler question of whether the patient’s capacity will change the treatment approach.Compared to the general population, people with serious mental illness have higher rates of physical illness and die at a younger age, but they do not commonly access palliative care services and are rarely engaged in end-of-life care discussions. Older people with serious mental illness can engage in advance care planning. Conversations about end -of-life care can occur without fear that a person’s psychiatric symptoms or related vulnerabilities will undermine the process. Clinicians are also advised to attend to any possible underlying issues, instead of focusing strictly on capacity. Routine documentation of end-of-life care preferences can support future decision making for family and clinicians at a time when patients are unable to express their decisions.More research about palliative care and advance care planning for people with serious mental illness is needed. This is even more urgent in light of the COVID-2019 pandemic, as there are potential needs for rationing of health care in the context of scarce resources. Health services should consider recommendations that advanced care planning should be routinely implemented. These recommendations should not only focus on the general population and should include patients with serious mental illness.

Effects of Visual Aids for End-of-Life Care on Decisional Capacity of People With Dementia

2020 ◽  
Vol 29 (1) ◽  
pp. 185-200 ◽  
Author(s):  
Wan-Zu D. Chang ◽  
Michelle S. Bourgeois
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
External Support ◽  
Life Care ◽  
Visual Aids ◽  
Decisional Capacity ◽  
People With Dementia ◽  
Decision Making Capacity ◽  
Moderate Dementia

Purpose This study evaluated the decision-making capacity of persons with mild and moderate dementia on end-of-life care when using visual aids. A secondary purpose was to learn whether the judges naive to the experimental conditions would rate participants' decisional abilities as better when augmented by visual aids, thereby validating the behavioral changes due to the use of these external support. Method Twenty older adults with mild and moderate dementia demonstrated Understanding, Expressing a Choice, Reasoning, and Appreciation of 2 medical vignettes under 2 counterbalanced conditions: verbal alone or verbal with visual aids. Transcripts were analyzed and scored to measure decisional skills. Twelve judges rated participants' decisional abilities using a 7-point Likert scale. Results Participants demonstrated significantly better overall decisional capacity in Understanding, Reasoning, and Appreciation when supported by visual aids during the decision-making process. No significant differences between conditions were found in Expressing a Choice, the decisional skill Logical Sequence under Reasoning, and Acknowledgment under Appreciation. Overall, the judges' ratings validated these outcomes; the judges' ratings reflected greater agreement in the visual condition than in the verbal condition. Conclusions Findings indicated that visual aids (a) improved the decision-making capacity of individuals with dementia in comprehending medical information, employing supportive reasons, and relating this information to his or her own situation and (b) contain the potential for judges who majored or are majoring in speech-language pathology to reach a stronger consensus when determining the decision-making capacity of individuals with dementia.

Specific Ethical Issues at the End of Life (DRAFT)

2018 ◽  
Author(s):  
Robert C. Macauley
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Ethical Issues ◽  
Care Planning ◽  
High Burden ◽  
Code Status ◽  
Decision Making Capacity ◽  
Advance Care

A specific application of advance care planning has to do with determining the “code status” of a patient. Many of the terms used to document this status are misunderstood or carry unfortunate connotations, such as “DNR.” It is more appropriate to refer to a “Do Not Attempt Resuscitation” (DNAR), to emphasize the uncertainty as to whether attempted resuscitation will be successful. Code status is especially relevant to patients who “want everything,” which may include high-burden and low-benefit procedures. Time-limited trials and Do Not Escalate Treatment orders may be considered in those situations. There may also be situations when a patient’s refusal should be overridden, when the patient’s decision-making capacity is compromised.

Prospective assessment of symptom burden interfering with decision making during the end-of-life phase of high-grade glioma patients.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 90-90
Author(s):  
Tobias Walbert ◽  
Lonnie Schultz ◽  
Joel Phillips
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Karnofsky Performance Status ◽  
Performance Status ◽  
Symptom Burden ◽  
High Grade Glioma ◽  
Special Focus ◽  
High Grade ◽  
Karnofsky Performance Status Score ◽  
Decision Making Capacity

90 Background: To date it is unclear when patients with high grade glioma (HGG) lose their capacity to make decisions during the end-of-life (EoL) phase. EoL symptoms have not been prospectively assessed. The goal of this prospective single center study was to assess the symptom burden in terminal HGG patients with a special focus on symptoms related to decision making capacity during the last 3 months of life. Methods: Patients with HGG, failing 3rd line therapy, showing clinical and/or radiological progression with a Karnofsky Performance Status score < 60 were eligible for enrollment. A baseline MD Anderson Symptom Inventory Brain Tumor Module (MDASI-BT) was performed upon enrollment. Patients or surrogates received bi-weekly telephone calls to repeat the MDASI-BT. Calls continued until death, or refusal to participate. Symptoms were stratified by weeks prior to death. Mixed models were used to assess for symptom and interference changes over time. Overall time effect was tested at the 0.05 level. If significant, pairwise comparisons of the time groups were done. Testing level was set at 0.01 to take into account the large number of comparisons. Results: Symptom scores of 52 patients are available for analysis. Symptoms involved in decision making such as speaking, concentrating, drowsiness (all p < 0.001), and understanding (p < 0.011) started to decline severely 12 weeks prior to death. The cognitive construct (understanding, remembering, speaking, concentrating) was significantly impaired during the last 2 weeks of life and started to deteriorate after week 12 (p < 0.001). The decision making composite score (understanding, speaking, concentrating, fatigue, drowsiness) showed the same pattern (p < 0.001). Overall disease burden also significantly increases within the last 2 weeks of death. Conclusions: Patients with HGG have a high symptom burden during the active EoL phase, increasing significantly during the last 12 weeks prior to death. Symptoms interfering with decision making capacity increase after week 12 and reach their peak 2 weeks prior to death. These findings stress the importance of early initiation of palliative care and advance care planning in patients with HGG.

Artificial nutrition and hydration at the end of life: Ethics and evidence

2006 ◽  
Vol 4 (2) ◽  
pp. 135-143 ◽  
Author(s):  
LINDA GANZINI
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Artificial Nutrition ◽  
Artificial Nutrition And Hydration ◽  
Medical Treatments ◽  
Legal Principles ◽  
Feeding Tubes ◽  
Endoscopic Gastrostomy ◽  
Decision Making Capacity ◽  
Nutrition And Hydration

The case of Terri Schiavo resulted in substantial media attention about the use of artificial nutrition and hydration (ANH) especially by percutaneous endoscopic gastrostomy (PEG). In this article, I review ethical and legal principles governing decisions to choose or forgo ANH at the end of life, including issues of autonomy and decision-making capacity, similarities and differences between ANH and other medical treatments, the role of proxies when patients lack decision-making capacity, and the equivalence of withholding and withdrawing treatment. Evidence for palliative or life-sustaining benefits for ANH are reviewed in three disease processes: amyotrophic lateral sclerosis (ALS), cancer, and dementias, including Alzheimer's disease. Although more recent studies suggest a possible palliative role for ANH in ALS and terminal cancer, feeding tubes do not appear to prolong survival or increase comfort in advanced dementia of the Alzheimer's type.

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