Health Care Proxy Research Articles

Documentation of Decision-Making Capacity, Informed Consent, and Health Care Proxies: A Study of Surrogate Consent

Patients in the general hospital are routinely asked to make decisions about their medical care. However, some of them are unable to express a choice, understand the information provided, weigh the options, or make a decision for themselves; when this occurs, the task of making an appropriate medical decision is left to another-a substitute decision-maker (SDM). We sought to understand the practice patterns surrounding surrogate consent. We hypothesized that SDMs would be used frequently for patients with an altered mental status (AMS) but that there would be insufficient documentation of health care proxies (HCP) and of clinician assessment of a patient's decision-making capacity. A retrospective chart review was conducted on inpatients who underwent a lumbar puncture. The review assessed whether patients had a HCP in the record, if the patient's mental status was evaluated prior to obtaining informed consent, if the patient's capacity was addressed in this assessment, and whether a SDM was asked to provide the informed consent. Consistent with our hypotheses, we found that the majority of patients did not have documentation of a HCP in the record. We found that the mental status of all patients was assessed prior to the procedure, but that documentation regarding assessment of decision-making capacity was lacking. Our pilot investigation suggests that there is need for improvement in our evaluation and documentation of altered mental status and a patient's ability to make informed decisions. To this end, several quality-improvement suggestions are discussed.

A Social Work Perspective: Attitudes Toward End-of-Life Planning

This research examined social workers' attitudes toward end-of-life planning and related factors in a cross-sectional study (N = 844). Data were gathered on completion of a health care proxy, personal comfort, training experiences of social workers, and demographics. Attitudes toward end-of-life planning were related to personal completion of the health care proxy, personal comfort, and years of social work experience. These measures remained significant in all steps of the regression, regardless of practice grouping (health and aging or other than health and aging), suggesting the relative importance of personal rather than professional aspects. Respondents in the health and aging fields are older than those in other than health and aging, underscoring concerns about workforce issues in the field of aging.

Electronic Medical Record Reminders and Panel Management to Improve Primary Care of Elderly Patients

Most elderly patients do not receive recommended preventive care, acute care, and care for chronic conditions. We conducted a controlled trial to assess the effectiveness of electronic medical record (EMR) reminders, with or without panel management, on health care proxy designation, osteoporosis screening, and influenza and pneumococcal vaccinations in patients older than 65 years. Physicians were assigned to 1 of the following 3 arms: EMR reminder, EMR reminder plus panel manager, or control. We assessed completion of recommended practices during a 1-year period. Among patients who had not already received the recommended care, health care proxy was designated in 6.5% of patients in the control arm, 8.8% of the EMR reminder arm, and 19.7% of the EMR reminder plus panel manager arm (P=.002). Bone density screening was completed in 17.7% of patients in the control arm, 19.7% of the EMR reminder arm, and 30.5% of the EMR reminder plus panel manager arm (P=.02). Pneumococcal vaccine was given to 13.1% of patients in the control arm, 19.5% of the EMR reminder arm, and 25.6% of the EMR reminder plus panel manager arm (P=.02). Influenza vaccine was given to 46.8% of patients in the control arm, 56.5% of the EMR reminder arm, and 59.7% of the EMR reminder plus panel manager arm (P=.002). Results were similar when adjusted for individual physician performance in the preceding year, patient age, patient sex, years cared for by the practice, and number of visits. Electronic medical record reminders alone facilitated improvement in vaccination rates and, when augmented by panel management, facilitated further improvement in vaccination rates and boosted the rates of health care proxy designation and bone density screening. clinicaltrials.gov Identifier: NCT01313169.

Coping styles, health status and advance care planning in patients with hematologic malignancies

This study evaluated whether measures of psychological well-being, including coping style, are associated with advance care planning (ACP). Data were from the Hematology Communications Study (HEMA-COMM), a prospective observational study of physician–patient communication in patients with hematologic malignancies. ACP was defined as having a living will, having a health care proxy, discussing life support with family or friends and discussing life support with a doctor or nurse. A total of 293 patients participated: only 45 (15%) had all the elements of ACP; 215 (73%) had at least one element of ACP, while 33 (11%) did not engage in ACP. In multivariate analysis, specific coping styles but not other measures of psychosocial well-being were associated with having written ACP. Verbal ACP was associated with patient-reported health and physician estimate of life expectancy. Our study suggests that tailoring ACP discussions to a patient's coping style may increase engagement in ACP.

Prehospital HMG Co-A reductase inhibitor use and reduced mortality in hemorrhagic shock due to trauma

3-Hydroxy-3-methyl-glutaryl Co-A reductase inhibitors (HMG Co-A reductase inhibitors, statins) are commonly used medications for the control of serum cholesterol. Recent data suggests that these medications also modify the inflammatory pathways in sepsis, septic shock, and hemorrhagic shock due to ruptured abdominal aortic aneurysms. Statin use in hemorrhagic shock due to trauma, however, has conflicting data, with one study showing improvement, but only in certain subsets of patients. We retrospectively reviewed the medical records of patients from our institution's trauma registry database from January 2000 to December 2008. We included patients with an age greater than 45years and an Injury Severity Score (ISS) greater than 15 with evidence of shock as follows: hypotension, elevated serum lactate, base deficit, metabolic acidosis, or objective evidence of end-organ malperfusion. We excluded patients with devastating head injury, patients with pre-existing advance directives directing against life-sustaining measures, patients for whom family or health care proxies withdrew support in 24h or less, and patients who succumbed to their injuries in the first 24h in the hospital. We compared age, gender, mortality, statin use, aspirin use, and Sequential Organ Failure Assessment (SOFA) scores. Mortality in the group without prehospital statin use was 38.1% (95% confidence interval [CI]: 28.4-48.8%) and mortality in the group with prehospital statin use was 8.3% (95% CI: 2.13-22.5%, P=0.0009). The absolute risk reduction was 29.8% and the relative risk reduction was 78.1%. Survivors were statistically significantly younger than nonsurvivors in the group without prehospital statin use, but not in the group with documented prehospital statin use. There was no similar benefit to aspirin use. There were no significant differences in the SOFA scores, hospital length of stay (HLOS), or intensive care unit length of stay (ICU LOS) between statin users and nonusers. Prehospital HMG Co-A reductase use was associated with improved survival in a population with severe trauma and evidence of ongoing hemorrhagic shock.

Physicians' Involvement with the New York State Health Care Proxy

This study examined physicians' attitude, involvement, and perceived barriers with the health care proxy. A cross sectional, correlational design was used to survey practicing physicians (N = 70). Physicians had positive attitudes toward the health care proxy and indicated that the most significant barriers to health care proxy completion were patient discomfort in discussing the topic, patient knowledge about the health care proxy, and timing of discussions. Physician involvement with the health care proxy included supporting patients' wishes on the health care proxy, initiating discussions with patients about the New York State (NYS) health care proxy, and advocating for patients' rights about the health care proxy. A multiple regression analysis was conducted to understand the factors that predicted overall physician involvement. End-of-life training was a significant predictor. Implications for training and education of physicians and multidisciplinary work with health care professionals, including social workers and nurses, are discussed.

Protecting Participants of Clinical Trials Conducted in the Intensive Care Unit

Research in the intensive care unit (ICU) raises a number of scientific and ethical challenges. Potential participants in critical care studies are likely to be considered particularly vulnerable-they may lack sufficient capacity to make informed decisions about trial participation, their health care proxies may lack legal authority to enroll them in research trials or may not know their true intent, and the life-threatening nature of the illness may make them or their surrogates more susceptible to therapeutic misconception. Because of this, critical care investigators must exercise extreme caution when designing and conducting studies in the ICU. In this article, we review the key literature addressing the various scientific and ethical issues raised by critical care research, including questions of equipoise and the selection of control groups, informed consent, therapeutic misconception, conflict of interest, and quality improvement projects. We also describe the current status of key policy or regulatory initiatives designed to address these issues, particularly in light of recent controversies involving critical care studies like the ARDSNet trial.

Massachusetts E-Health Project Increased Physicians’ Ability To Use Registries, And Signals Progress Toward Better Care

The ability to generate and use registries--lists of patients with specific conditions, medications, or test results--is considered a measure of physicians' engagement with electronic health record systems and a proxy for high-quality health care. We conducted a pre-post survey of registry capability among physicians participating in the Massachusetts eHealth Collaborative, a four-year, $50 million health information technology program. Physicians who participated in the program increased their ability to generate some types of registries--specifically, for laboratory results and medication use. Our analysis also suggested that physicians who used their electronic health records more intensively were more likely to use registries, particularly in caring for patients with diabetes, compared to physicians reporting less avid use of electronic health records. This statewide project may be a viable model for regional efforts to expand health information technology and improve the quality of care.

Agreement Between Older Persons and Their Surrogate Decision-Makers Regarding Participation in Advance Care Planning

To examine agreement between older persons and their surrogates regarding participation in advance care planning (ACP). Observational cohort study. Community. Persons aged 65 and older and the individual they identified as most likely to make treatment decisions on their behalf. Older persons were asked about participation in four activities: completion of living will, completion of healthcare proxy, communication regarding views about life-sustaining treatment, and communication regarding views about quality versus quantity of life. Surrogates were asked whether they believed the older person had completed these activities. Of 216 pairs, 81% agreed about whether a living will had been completed (κ=0.61, 95% confidence interval (CI) 0.51-0.72). Only 68% of pairs agreed about whether a healthcare proxy had been completed (κ=0.39, 95% CI 0.29-0.50), 64% agreed about whether they had communicated regarding life-sustaining treatment (κ=0.22, 95% CI 0.09-0.35), and 62% agreed about whether they had communicated regarding quality versus quantity of life (κ=0.23, 95% CI 0.11-0.35). Although agreement between older persons and their surrogates regarding living will completion was good, agreement about participation in other aspects of ACP was fair to poor. Additional study is necessary to determine who is providing the most accurate report of objective ACP components and whether agreement regarding participation in ACP is associated with greater shared understanding of patient preferences.

Advance Directives in an Oncologic Intensive Care Unit: A Contemporary Analysis of their Frequency, Type, and Impact

Our objective was to provide a contemporary analysis of the prevalence, types, and impact of advance health care directives in critically ill cancer patients. We retrospectively reviewed all intensive care unit (ICU) admissions (January 1, 2006 to April 25, 2008) at an oncologic center and identified all patients who completed a living will (LW), or health care proxy (HCP), or neither prior to ICU admission. Demographics, clinical data, end-of-life (EOL) parameters and outcomes were compared among three groups: LWs, HCPs, and no LW or HCP. Of 1,333 ICU admissions, 1,121 patients (84%) were included for analysis: 176 patients (15.7%) had LW, 534 (47.6%) had HCP and 411 (36.7%) had no LW or HCP. Patients with LW were significantly more likely to be older and white as compared to patients with HCP alone, or no LW or HCP. There were no significant demographic differences between patients with HCP or no LW or HCP. Patients with HCP alone, or no LW or HCP, were significantly more likely to have Medicaid than patients with LW. There were no differences noted in ICU care, EOL management, or outcomes among the three groups. The prevalence of LWs in patients admitted to our oncologic ICU is low. More than half of the remaining patients had designated HCPs. Older age and white race were associated with the presence of LWs. However, the presence of LWs or HCPs did not influence ICU care, EOL management or outcomes at our institution.

Mental health and exposure to patient distress among families of nursing home residents with advanced dementia.

The effect of suffering among patients with advanced dementia on their family members' mental health has not been investigated. To describe family members' exposure to distressing symptoms among nursing home (NH) residents with advanced dementia and associations between such exposure and family members' mental health. Data were obtained from an 18-month prospective cohort study of NH residents with advanced dementia and their family member health care proxies (HCPs). Exposure to resident symptoms and associated fear and helplessness was measured quarterly using the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) scale (range 0-120). HCP mental health was assessed quarterly using the Composite International Diagnostic Interview Short Form (CIDI-SF) (depression), K6 (psychological distress, range 0-24), and SF-12(®) mental health subscale. Seven hundred seventy-nine SCARED scale assessments were completed by 225 HCPs. The most frequent distressing symptoms were the following: feeling the resident had had enough (33.2%), choking (21.1%), and pain (18.9%). The symptoms eliciting the greatest fear were thinking the resident was dead and seeing them choke. A sense of helplessness was highest when the resident was observed to be in pain or choking. Family members with SCARED scores >0 were more likely to meet criteria for depression on the CIDI-SF (adjusted odds ratio [AOR] 2.59, 95% confidence interval [CI] 1.14, 5.85), have a K6 score >0 (AOR 2.31, 95% CI 1.55, 3.43), and have lower SF-12 scores (adjusted parameter estimate -1.51, 95% CI -2.56, -0.47). Family member exposure to distressing symptoms experienced by their loved ones with advanced dementia is not uncommon and is associated with worse mental health.

Rupture of the Posteromedial Papillary Muscle Leading to Partial Flail of the Anterior Mitral Leaflet

HomeCirculationVol. 123, No. 9Rupture of the Posteromedial Papillary Muscle Leading to Partial Flail of the Anterior Mitral Leaflet Free AccessResearch ArticlePDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissionsDownload Articles + Supplements ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toSupplemental MaterialFree AccessResearch ArticlePDF/EPUBRupture of the Posteromedial Papillary Muscle Leading to Partial Flail of the Anterior Mitral Leaflet Michael G. Fradley and Michael H. Picard Michael G. FradleyMichael G. Fradley From the Department of Medicine, Division of Cardiology, Massachusetts General Hospital, Boston. Search for more papers by this author and Michael H. PicardMichael H. Picard From the Department of Medicine, Division of Cardiology, Massachusetts General Hospital, Boston. Search for more papers by this author Originally published8 Mar 2011https://doi.org/10.1161/CIRCULATIONAHA.110.984724Circulation. 2011;123:1044–1045An 86-year-old woman with a history of hypertension presented with acute onset of chest pain and evidence of shock (hypotension and tachycardia). For the preceding 2 weeks, she had been experiencing intermittent nausea and vomiting; proton pump inhibitors did not improve her symptoms. The ECG showed ST elevations in the inferior leads and ST depressions in leads V1 and V2, with reciprocal ST depressions in leads I and aVL, suggesting an acute inferoposterior infarction (Figure 1). Physical examination also revealed a new 2/6 holosystolic murmur at the apex and significant bilateral rales. She was taken emergently to the cardiac catheterization laboratory, where 100% thrombotic occlusion of the middle right coronary artery was revealed (Figure 2A). A left ventriculogram revealed severe (4+) mitral regurgitation with a normal-sized left atrium (Figure 2B). An intra-aortic balloon pump was placed, and she was transferred to the cardiac intensive care unit. A transthoracic echocardiogram revealed normal right and left ventricular size and function, with evidence of inferior and posterior wall hypokinesis. The estimated pulmonary artery systolic pressure was significantly elevated at 77 mm Hg. Most important, however, the echocardiogram confirmed both severe mitral regurgitation with rupture of the posteromedial papillary muscle and partial flail of the anterior mitral leaflet (Figure 3A through D; Movies I through III in the online-only Data Supplement). Unfortunately the patient's clinical status continued to worsen. She was deemed extremely high risk for surgery, and her healthcare proxy confirmed her do-not-resuscitate/do-not-intubate status. She expired several hours later despite maximal hemodynamic support.Download figureDownload PowerPointFigure 1. Twelve-lead surface ECG showing ST elevations in leads II, III, and aVF and ST depressions in leads V1, V2, I, and aVL, suggesting acute inferoposterior myocardial infarction.Download figureDownload PowerPointFigure 2. A, Right coronary artery angiogram demonstrating midvessel occlusion (arrow). B, Left ventriculogram, right anterior oblique view, demonstrating severe mitral regurgitation. LA indicates left atrium; LV, left ventricle; and Ao, aorta.Download figureDownload PowerPointFigure 3. Transthoracic echocardiogram images in the parasternal long-axis (A and B) and apical 2-chamber (C) views demonstrating the ruptured posteromedial papillary muscle (arrow) and partial flail/prolapse of the anterior mitral leaflet (arrowhead). D, Transthoracic echocardiogram, parasternal long-axis view with color Doppler, demonstrating severe mitral regurgitation. LA indicates left atrium; LV, left ventricle; and RV, right ventricle.Acute mitral regurgitation caused by papillary muscle rupture is a rare but life-threatening complication of myocardial infarction. Patients typically present with an inferior infarction with the right coronary artery as the culprit. They also tend to be older and have a preserved ejection fraction. Rupture typically occurs within 5 days of the infarct.1 It is postulated that the preserved contractility exerts increased stress on an already compromised papillary muscle, eventually leading to rupture.2This case highlights the importance of understanding mitral valve anatomy. The valve itself comprises an anterior and a posterior leaflet. Valvular competence is maintained by the 2 papillary muscles (anterolateral and posteromedial) that are attached to the leaflets via the chordae tendinae. Typically, the anterolateral muscle is a single large structure, whereas the posteromedial muscle can have 1 to 3 heads.3 The 2 papillary muscles send chordae tendinae to both leaflets of the mitral valve; as a result, either leaflet can be affected by rupture of either papillary muscle. Blood supply to the anterolateral muscle is supplied by both the left anterior descending and circumflex arteries, whereas the posteromedial muscle is supplied only by the right coronary artery. Rupture of the posteromedial muscle is more common because of its single blood supply.4Echocardiography is useful in the diagnosis of papillary muscle rupture with a sensitivity of 65% to 85%.4 Although it may be easy to identify prolapse or flail of the dysfunctional leaflet and the direction of the regurgitant jet on echocardiography, these findings do not reliably predict the affected papillary muscle, and direct visualization of the rupture is necessary for definitive diagnosis.DisclosuresNone.FootnotesThe online-only Data Supplement is available with this article at http://circ.ahajournals.org/cgi/content/full/123/9/1044/DC1.Correspondence to Michael Fradley, MD, Massachusetts General Hospital, Boston, MA 02114. Email [email protected]org

Life Imitates Work

Life Imitates Work

Ethical and Legal Views Regarding Deactivation of Cardiac Implantable Electrical Devices in Patients With Hypertrophic Cardiomyopathy

Little is known about patients' views surrounding the ethical and legal aspects of managing pacemakers (PMs) and implantable cardioverter-defibrillators (ICDs) near the end of life. Patients with hypertrophic cardiomyopathy (HC) are at heightened risk of sudden cardiac death and are common recipients of such devices. Patients with HC recruited from the membership of the Hypertrophic Cardiomyopathy Association were surveyed about their clinical histories, advance care planning, legal knowledge, and ethical beliefs relating to the withdrawal of PM and ICD therapy. The mean age of the 546 patients was 49.1 years, 47% were women, and 57% had ICDs. Only 46% of the respondents had completed an advance directive, only 51% had a healthcare proxy, and cardiac implantable electrical devices (CIEDs) were commonly not addressed in either (92% and 58%, respectively). Many patients characterized deactivating PMs or ICDs as euthanasia or physician-assisted suicide (29% for PMs and 17% for ICDs), and >50% expressed uncertainty regarding the legality of device deactivation. Patients viewed deactivation of ICDs and PMs as morally different from other life-sustaining therapies such as mechanical ventilation and dialysis, and these views varied substantially according to the CIED type (p <0.0001). The respondents expressed concerns regarding clinical conflicts related to religion, ethical and legal uncertainty, and informed consent. In conclusion, patients who have, or are eligible to receive, CIEDs might require improved advance care planning and education regarding the ethical and legal options for managing CIEDs at the end of life.

Applying the Transtheoretical Model to Health Care Proxy Completion

For many, an important health decision is whether or not to document end-of-life wishes using an advance directive (e.g., health care proxy). To date, interventions targeting this health behavior have had little effect on increasing advance directive completion rates. Health behavior models, such as the transtheoretical model (TTM) could be useful for understanding the health decision-making processes used along a continuum, from no intention to complete an advance directive to completing one and discussing it with an appointed advocate. To explore the applicability of the TTM for a previously understudied health behavior-completing a health care proxy (HCP). Four established TTM measures for completing a HCP (stages of change, processes of change, decisional balance, and self-efficacy) were administered to 566 adults with coverage from 1 of 2 health insurance companies. Separate analyses of variance were used to test the relationships between the independent variable (stages of change) and dependent variables (processes of change, decisional balance, self-efficacy scores). Consistent with other TTM research both the experiential and the behavioral processes of change revealed the lowest scores in the precontemplation stage peaking in the preparation stage. The pattern of pros and cons was replicated from previous TTM studies, with the 2 scores crossing over just prior to the preparation stage. Self-efficacy scores incrementally increased across the stages of change with the largest effect evident from the precontemplation to preparation stage. The models developed from this study can be used to guide the development of stage-based interventions for promoting health care proxy completion.

Uncooperative Mrs. Adams Got Her Way

Uncooperative Mrs. Adams Got Her Way

Patient and Caregiver Perspectives on the Hospice Enrollment Decision (763)

1.Describe patient-family-healthcare provider dynamics that precede hospice decision-making.2.Identify issues that are important for discussions with healthcare providers at key transition points (eg, goals of care or care needs change).3.Explain the series of decisions that hospice patients and their families encounter during the hospice enrollment process. Background. Although the number of people who receive hospice care in the United States has increased every year since the inception of the Medicare Hospice Benefit, the median length of stay hovers around 21 days and 35.4% die within 7 days of admission (NHPCO, 2009). The factors that contribute to short utilization of hospice and the barriers to earlier admissions are not well understood. Research objectives. The purpose of this prospective study was to investigate, in real time, how hospice patients and their informal caregivers make the decision to enroll in hospice. Methods. In-depth interviews were conducted with 37 hospice patients and 56 informal caregivers. Interviews were audio taped, transcribed and coded to identify emergent themes. Results. Hospice decisions were made individually by either the patient (2%), a family caregiver (29%), or by the physician (21%) and collaboratively in 48% of the situations with input from both the family and healthcare providers. Previous knowledge of or experience with hospice (either directly or indirectly) positively influenced patient and family decision-making about hospice enrollment. Three descriptive profiles of events that precede the hospice enrollment decision emerged: (1) Transitional decisions: continued treatment and rehospitalization are no longer desired; (2) Care management decisions: care has become complex and difficult; and (3) Terminal stage decisions: recognition that death is imminent. The decision to enroll in hospice is followed by a series of additional decisions: meeting increasing care needs, advance care planning (e.g., healthcare proxy and DNR), and desired location of death (eg, hospice inpatient unit or nursing home). Conclusion. The hospice enrollment decision is an ongoing process rather than one moment in time. Implications for research, policy, or practice. The results suggest that straightforward patient-family-provider communication about care transitions that are occurring and can be forecast on the trajectory of advanced illness as well as previous experience are key to the decision to utilize hospice care.

Hospice Use and Outcomes in Nursing Home Residents with Advanced Dementia

To identify characteristics of nursing home (NH) residents with advanced dementia and their healthcare proxies (HCPs) associated with hospice referral and to examine the association between hospice use and the treatment of pain and dyspnea and unmet needs during the last 7 days of life. Prospective cohort study. Twenty-two Boston-area NHs. Three hundred twenty-three NH residents with advanced dementia and their HCPs. Data were collected at baseline and quarterly for up to 18 months. Hospice referral, frequency of pain and dyspnea, and treatment of these symptoms was ascertained. HCPs reported unmet needs during the last 7 days of the residents' lives for communication, information, emotional support, and help with personal care. Twenty-two percent of residents were referred to hospice. After multivariable adjustment, factors associated with hospice referral were nonwhite race, eating problems, HCP's perception that the resident's had less than 6 months to live, and better HCP mental health. Residents in hospice were more likely to receive scheduled opioids for pain (adjusted odds ratio (AOR)=3.16; 95% confidence interval (95% CI)=1.57-6.36) and oxygen, morphine, scopolamine, or hyoscyamine for dyspnea (AOR=3.28, 95% CI=1.37-7.86). HCPs of residents in hospice reported fewer unmet needs in all domains during the last 7 days of the residents' life. A minority of NH residents with advanced dementia received hospice care. Hospice recipients were more likely to received scheduled opioids for pain and symptomatic treatment for dyspnea and had fewer unmet needs at the end of life.

Sweeping Changes to New York’s Powers of Attorney

On January 27, 2009, Governor Paterson signed into law legislation enacting sweeping changes to New York State's statutory form of power of attorney. 1 The legislation took effect on September 1, 2009, and has focused attention on this relatively simple but key component of an individual's estate, tax, and disability planning. Technical amendments to the statute were enacted in 2010, effective as of September 12, 2010. This article addresses the use and forms of powers of attorney and discusses in detail the changes to the statutory form contained in the legislation. POWERS OF ATTORNEY GENERALLY A power of attorney is a written document that confers on a person (called an or attorney-in-fact) or two or more people acting jointly or separately the power to act on behalf of another person (called the principal) in a potentially wide range of matters. Under a power of attorney, the agent is authorized to manage some part or of the principal's financial and personal affairs during periods of temporary or permanent illness or disability. It is an essential document in most estate plans and when planning for the possibility of disability. The power of attorney can also be used at other times, such as when the principal is traveling or for the sake of convenience, particularly for the elderly or infirm, even if the principal is otherwise competent and free of illness. Who May Act as an Attorney-in-Fact? Any legally competent individual of at least 18 years of age may grant a power of attorney or serve as an attorney-in-fact, regardless of the relationship between the principal and the agent. (Contrast this with a health care proxy where certain persons, such as the principal's health care providers, cannot serve in that capacity.) A principal may name more than one agent and direct whether each agent may act on his or her own or must act in conjunction with one or more other agents. It is also possible to appoint an alternate agent should the first agent or agents named cease to act. Scope of the Agent's Authority Each state has its own laws governing the form and scope of a power of attorney. Powers of attorney can be detailed, lengthy documents laying out each and every power conferred on the attorney-in-fact. These documents are the creatures of common law (i.e., nonstatutory) principles of agency, and they are generally effective to confer authority on the agent without enabling legislation. In addition, many states, including New York, have created short-form powers of attorney in which a statutorily mandated form references specific categories of powers that may be conferred on an agent. 2 In New York's case, the General Obligations Law provides a description of what is covered by each category. There are few areas in which an attorney-in-fact cannot act if properly authorized by the principal. The principal may pick and choose among the powers or confer of them. It is also possible to add powers to the form or to limit the scope of particular powers, provided that the modifications are not inconsistent with the other provisions of the form. 3 For example, New York's statute in effect prior to September 1, 2009 (the old law), conferred powers in the areas of real estate transactions, chattel and goods transactions, bond, share and commodity transactions, banking transactions, business operating transactions, insurance transactions, estate transactions, claims and litigation, personal relationships and affairs, benefits from military service, records, reports and statements, retirement benefit transactions, gifts to a spouse and descendants up to $10,000, tax and other matters. 4 If the principal confers authority on the attorney-in-fact as to all other matters, then the agent is authorized to act as the principal's alter ego with respect to any and things not enumerated elsewhere in the statute. 5 As discussed in this article, the newly amended statute (the new law) permits certain additional powers to be conferred on the agent, although it limits other powers. …

Maine Is Still My Best Medicine: An Update on the Path From Sibling to Sibling–Parent

Three years ago, I wrote about my relationship with my sister Amelia, a person with mild intellectual disability. Specifically, I wrote about my struggle to accept, but more important to implement, the social model of disability in my life as her combined sibling–parent figure. At that time, we were doing well. In many ways, we are still doing well...but life has changed a lot on my own path from sibling to sibling–parent. How different things are now compared with 2 years ago when I wrote, ‘‘The Maine Effect, or How I Finally Embraced the Social Model of Disability’’ (Cameron, 2008). Our family coined the phrase ‘‘the Maine effect’’ when referring to Amelia’s enjoyment at the Maine camp each summer. In my essay, I noted that ‘‘the self-inflicted bloody noses, hair pulling, skin-picking and otherwise violent tantrums that we feared on a moment-by-moment basis at home were but rare visitors at the lake, replaced instead by what felt to us like ‘a clear sky and a calm soul’’’ (p. 56). Since that time, our father’s disability has worsened significantly and all formal parental roles and responsibilities are now mine. I am the agency contact, the underwear buyer, the doctor’s visit companion, the health care proxy, and the representative payee. It has been a rough adjustment for everyone involved—my parents, my husband, Amelia, all of the social service system workers involved in our case—and for me too. Our father’s worsening health is very hard for Amelia to cope with and has made the transition into this new phase of our sibling relationship all the more difficult (e.g., ‘‘You’re not Daddy!’’ has become a common refrain). Dad’s illness is Amelia’s selfdescribed reason for a number of new psychiatric hospitalizations, despite an uptick in therapy appointments, more time with my husband and me at our home, and maintenance of the formerly magic level of Risperdal. Recently, I sat with Amelia in the psychiatric emergency room, waiting to hear if her group home would be taking her back in after a particularly bad incident. She had landed there after engaging in an impromptu home invasion in her group home’s neighborhood, replete with the entire police department of her town showing up. Amelia looked at me sheepishly and said, ‘‘But you are still going to take me to Maine, right? Maine is still my best medicine.’’ Making the connection between bad behavior and consequences has never worked in the long term for Amelia. I also cannot stomach the thought of denying her the happiness and fulfillment she seems to find in the Maine wilderness. Although my father cannot travel with the family to our camp anymore, the Maine camp is still in place, still wild and remote, and still ripe with the possibility of living life one’s own way. However, both the tax burden and the upkeep of the ramshackle, ‘‘off of the grid,’’ more-than-rural hideout are fast approaching the realm of what is financially and emotionally impossible for me to maintain. I have accepted the reality that I am not able to continue this tradition for Amelia, at least not in the exact vein of the way my parents did. Sitting at her bedside in the emergency room as she dozed, I took a moment for myself, thinking ‘‘I need to find a new way to keep her ‘Maine medicine’ going.’’ I reflected on our last summer in Maine. At the start of the trip, I had spent the best part of a day in the local emergency room as a result of her pneumonia on top of both a vaginal infection and a nasty intestinal infection. The doctors and nurses we met with had urged me to do my best to keep her very clean to reduce the chance of reinfection. * Note. ‘‘Liz Cameron,’’ PhD, a pseudonym, is an assistant professor of social work. ‘‘Amelia Cameron,’’ also a pseudonym, lives and works in her community. Both sisters hope to continue enjoying Maine and its medicine—the Maine effect—for as long as possible. INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 48, NUMBER 6: 478–479 | DECEMBER 2010