Health Care Proxy Research Articles

Doctor–Patient Partnership: Patients of Advanced Age Use Medical Diaries to Improve Coordination of Care

Coordination of care suffers when patients are treated by multiple physicians who do not communicate with each other. Medicare patients see about five different physicians a year, and patients with heart failure or diabetes see on average 13 physicians annually. The Institute of Medicine (2006) also notes that Medicare pays providers for the number of patients served rather than patient outcomes or coordination of care. Thus, few health care professionals have the time to volunteer for care coordination. If patients of advanced age are the first to realize their symptoms, then they are in the best position to coordinate their own health care. Some such patients may designate a family member or caretaker to serve this role, but many find taking on this responsibility for themselves both empowering and rewarding. To collect data and to communicate these data to health care providers, we propose that patients keep medical diaries. These are designed to summarize symptoms, test results, diagnoses, treatments, outcomes, and follow-ups. This proposal is based on the hypothesis that patients of advanced age record their test results in a timely way and communicate these data to their health care providers regularly. For patients, we assume that the diaries help them see the cause and effects of unhealthy behaviors. For instance, they may notice decreased blood pressure when they stop shaking salt on their food. Or their body weight may decrease when they omit sweets from their meals. We notice that such observations motivate patients to adopt healthy habits. As for families and caretakers, medical diaries bring them up to date with patients' symptoms, medications, and doctor appointments. In this way, family and caretakers help patients avoid duplicate testing and overmedication. Patients like to customize their medical diaries according to their personal tastes. In addition, we teach them that the following sections in the diary are useful to health care providers (see Appendix A): calendar of doctor appointments; chief concerns; diagnoses; medications and allergies; vaccinations; operations; dietary preferences; tobacco, alcohol, and drug dependence; exercise; healthcare proxy; advanced directives; medical policy statement; blood pressures; body weights; respiratory rates; temperature; teeth; mood; and test results. In this way, we teach patients to focus their efforts on tracking measures proven to save lives and improve health. For instance, we designed medical diaries to focus on evidence-based improvements in medication adherence, hepatitis vaccines, diabetes, substance abuse, inactivity, hypertension, obesity, hypercholesterolemia, HIV infection, depression, and cancer screening with Pap smears and colonoscopy (Farley, 2009). Critical questions about medical diaries are as follows: 1. Are the data recorded by patients true? 2. Is it fair to ask patients of advanced age to maintain diaries and coordinate their own health care? 3. Will medical diaries build goodwill and improve doctor- patient relationships? 4. Will the medical diary benefit all concerned, including the patient's family and home health aides? To address these questions and to illustrate how medical diaries improve patient care, let's consider four patient scenarios. Question 1. Are the data recorded by patients true? Case 1. I am a 95-year-old man with hypertension. On Thursday, 11/5, I didn't take my blood pressure pill because I was out of town. The next day at noon when I returned home, I took my pill. Then, on Saturday 11/7, while running to catch a bus, I felt chest discomfort for 1 minute that stopped as soon as I stepped onto the bus. On Sunday, 11/8, I took my BP pill at 7 a.m., but while walking up the hill to church, I had trouble breathing. However, as soon as I stand still I can breathe again. Such casual observations and concerns are often omitted during the physician's interview because the patient feels that these symptoms are not important and the physician seems too busy. …

A new law on advance directives in Germany

This article presents the new German law on advance directives from 1 September 2009. The history of the parliamentary process of this law is described, the present regulations are explained,...

Exploring Attitudes toward Advance Care Directives in Two Diverse Settings

Advance care directives (ACD) are not used equally by different ethnic groups in the United States. Theories regarding this difference include lack of access to health care, mistrust of the health care system, absence of surrogate decision makers, and universal lack of knowledge on this topic. Few studies have investigated attitudes toward advance care planning for future end-of-life decision-making in the Latino and Cambodian communities. Six focus groups were conducted, including a total of 20 Latino and 19 Cambodian patients of two community health centers. Focus groups were audiotaped, transcribed, and qualitatively analyzed to identify major themes regarding attitudes toward advance directives and engaging in discussion about advance care planning. Most patients did not have a health care proxy nor had discussed this topic with their doctor. Two broad themes were identified: integration of belief systems (including religion, suffering/destiny, and importance of quality of life) as well as process/preferences regarding decision-making (including family roles, provider roles, confusion/uncertainty regarding ACD, and openness to learning about ACD). In focus groups discussing end-of-life decision making among Latino and Cambodian patients, two main themes emerged: integration of belief systems and process/preferences regarding end-of-life care. In particular, efforts to improve completion of advance care directives in diverse populations should consider patients' emphasis on quality of life and destiny in end-of-life planning as well as the role of family consensus in decision-making.

Advance Care Planning In Adults with Sickle Cell Disease (SCD)

AbstractAbstract 391Advance Care Planning (ACP) is the process by which patients, families and health care practitioners consider their values and goals and express preferences for future care. Written ACP includes living wills, designation of a health care proxy, and do not resuscitate (DNR) orders. ACP provides a legal framework for end-of-life decisions and aligns patient's care with his/her end-of-life decisions if their decision-making ability becomes compromised. The high mortality and potential for unexpected deadly complications among sickle cell disease (SCD) patients, suggests that end-of-life care conversations between patients, family members and providers should be a necessary and helpful aspect of routine health care. Despite the early mortality of SCD patients, there is a lack of information regarding: 1) use of ACP in this population; 2) need for ACP as perceived by patients; and 3) psychosocial impact of ACP information. We therefore performed a study with a three-fold purpose: 1) to determine patient's perceived need for ACP information and their experiences with ACP: thoughts, wishes, and comfort discussing ACP; 2) to explore how an informational intervention designed to teach patients how to understand and complete ACP changes patients' perception of need and comfort discussing ACP and 3) to examine the impact of ACP information on patient perceptions of disease controllability. We hypothesized that when asked about ACP planning, most SCD adults would indicate thinking about ACP issues, but a significant portion of this population would not have completed advance directives and/or indicated specific end-of-life wishes. All 70 subjects -47 (67%) females and 23 males- completed a Pre-Informational Questionnaire (Pre-Q), 60 requested and received the ACP education session, and 62 completed the Post-Informational Questionnaire (Post-Q). Mean age for the patients studied was 38.07 years (females 40.3, males 33.6). Sickle genotypes were as follows: HgbSS / Sβ0thal genotype: 45 (64%), HgbSC 16 (23%), and HgbSβ+thal 9 (13%). Sixty one (87% of the subjects), reported not having written decisions for end-of-life medical treatment. All 9 patients with written decision were females. The mean age was significantly different (p=.0128) between those with written decisions (52 yrs, 32 – 77 yrs) and those without (35 yrs, 18–60 yrs). Fifty-four of those who completed the Post-Q reported not having written ACPs when enrolled in the study. Mean time between completion of Pre-Q and Post-Q was 11.6 weeks (range 3 – 41).Sixty one patients requested ACP information. The mean age of those who did not want ACP information was 34.7, while the mean age of those who did was 38.6. All patients who had written ACPs requested more information.We conclude that the majority of adult SCD patients studied do not have written advance directives (87%). This represents a large proportion of patients with chronic illness and high health services utilization but with unknown ACP wishes. About half (46%) of patients report having specific wishes about medical treatment if becoming very ill while an equal number are unsure, which shows a dichotomy regarding self-identified ACP decision making. There is a need for increasing SCD patient awareness and use of ACP. Further studies will help define how to address this need in SCD and similar chronically ill populations Disclosures:No relevant conflicts of interest to declare.

Planning for Future Care Needs: Experiences of Unmarried Heterosexual and Sexual Minority Women

This study examined the experiences of legally unmarried, middle-aged and older sexual minority (e.g., lesbian, bisexual) and heterosexual women in planning for future care needs and long-term assistance. A total of 215 women (90 sexual minority women and 125 heterosexual women) 41–78 years of age completed a survey about long-term care planning strategies, including: (1) executing a will; (2) naming a health care proxy; (3) purchasing long-term care insurance; and (4) discussing potential living arrangements with at least one family member. Overall, 18.5% of women reported completing zero of the strategies, and 3.4% reported completing all four. Over half (59%) had completed at least two strategies. Women were most likely to have executed a will (68%) and named a health care proxy (61%). Both sexual minority women and heterosexual women were most likely to have talked to a family member of choice, rather than a biological family member about living with them if they were unable to care for themselves. Currently, serving as a health care proxy was an important correlate for having made long-term care plans and was particularly important for sexual minority women. Women who are not in traditional marriage relationships tend to adopt long-term care planning strategies that legally clarify and establish the nature of their important relationships.

Advance Care Planning by Unmarried Women of Different Sexual Orientations: The Importance of Social Support

We examined social support as a facilitator of advance care planning in unmarried women of different sexual orientations. Survey participants consisted of 215 women, 90 who reported a preference for partnering with women (WPW) and 125 for partnering with men (WPM). Our findings indicate that the association between social support and advance care planning was mixed. Specifically, social support had no significant impact on executing a will for either WPW or WPM. Among WPW, naming a health-care proxy was associated with reporting a partner who provided social support. For WPM, having a partner for social support was not associated with naming a health-care proxy. These insights help in the understanding of women's advance care planning.

State University of New York Upstate Medical University College of Medicine

State University of New York Upstate Medical University College of Medicine

Focus on Patient Management: Responsibly Managing Psychiatric Inpatient Refusal of Medical or Surgical Diagnostic Work-Up

Focus on Patient Management: Responsibly Managing Psychiatric Inpatient Refusal of Medical or Surgical Diagnostic Work-Up

Guardianship Concerns in New York State

According to the U.S. Census Bureau, approximately 330 Americans turn 60 years of age each and every hour. Thus goes the aging of the baby-boomer generation, those Americans born between 1946 and 1964 (U.S. Census Bureau, 2006, 2009). Of course, the consequence of our aging is the aging of our parents and aunts and uncles. Today, most families have at least one member in the late eighties or early nineties, unheard of a mere 30 years ago. These numbers will place a demand on many resources. For certain, estate planning will become a priority for most everyone, no longer for a select few. It is simple enough to have an attorney prepare a health care proxy, living will, or power of attorney. Such documents are customarily prepared by attorneys as a complement to the preparation of a will. Many law offices consider the aforementioned as a package and strongly suggest that clients execute all documents. When prepared comprehensively and executed properly, the result of that planning is as follows: a principal delegates authority to an agent to make health care decisions or property management decisions for that person in the event that the principal is incapable of making those decisions. Recently, in response to the need to protect the elderly (in ever-increasing numbers) and for clarity, the rules for the preparation and execution of powers of attorney have been substantially modified in New York (General Obligations Law, 2009). All practitioners should review this new statute carefully before drafting a power of attorney. In the prior statute, only the principal was required to sign and have the signature acknowledged; now, both the principal and the agent must sign and have their respective signatures acknowledged. Major gift-giving authority may be delegated only by rider, that rider must be signed by the principal, and the signature must be acknowledged and witnessed by two witnesses, neither of whom may be a donee. There are additional changes, and I urge all to thoroughly familiarize themselves with those changes before drafting a power of attorney. Ordinarily, principals designate an agent to make decisions in the event that they cannot make them themselves, and the document that memorializes those directions is accepted by the health care provider or financial institution, as the case may be. At times, there may be a dispute about the authenticity of the document, but, normally when such a document is prepared by an attorney who supervises the execution, it will withstand scrutiny. More commonly, problems arise from the failure of the individual to have any document at all. Therein lies a very expensive, labor-intensive, and emotionally frustrating problem. Frequently, the only solution is to commence a guardianship proceeding. In guardianship, a person is appointed to make health care or financial decisions - or both - on behalf of an individual who is deemed incapacitated by family or friends or an independent business relation. THE PETERS FAMILY Earlier this year, I was retained by the Peters family (name changed) to assist Margaret Peters in her application to the court to be appointed guardian of the person and property of her brother, Matthew Simpson, a 92-year-old man who had had a devastating stroke. Margaret assured me that she and her brother were close and that they had a long-term, loving relationship. On speaking with both my client and her brother, it became clear that Matthew was not about to consent to anything. He stated, unequivocally, that his goal was to return to his apartment and continue as he had been prior to the stroke despite his extremely compromised condition. Since the stroke, both his physical and his mental health had been profoundly affected: he is no longer able to climb steps, is inappropriately paranoid and argumentative, has short-term memory loss in the extreme, and is undernourished and not capable of remembering to take his many medications for conditions related to his advanced age and physical and mental illnesses. …

Taking Control of Alzheimer's Disease: A Training Evaluation

The purpose of the current study was to evaluate a training program for persons with early-stage Alzheimer's disease and their care partners. Care partners were mailed two surveys, one for themselves and one for the person with dementia. Domains covered in the training included an overview of cognitive disorders, treatment of symptoms including medications, research updates and opportunities, memory and safety enhancement techniques, legal and financial planning, driving, ways to stay active, becoming an advocate, and communication. The results indicate a high level of participant satisfaction and impact on current lifestyles. Lifestyle changes such as diet, physical and mental exercises were likely to be made in tandem, by the person with dementia and the care partner together. Further, the results provide insights into the perceptions of the care partners and the persons with dementia as they learn about the disease and live through its progression. The program had positive impacts for the person with dementia and for the care partner in increasing knowledge of Alzheimer's disease, providing comfort with sharing the diagnosis, personal planning, and in decision making. Although many had taken important decision-making actions prior to the training, an additional twenty percent prepared or revised their wills, health care proxies, durable powers of attorney, or medical directives and looked into asset protection after participating in the training.

Using Standardized Patients to Educate Medical Students about Organ Donation

Medical students at Mount Sinai School of Medicine participated in an intervention designed to promote knowledge and improved communication skills related to cadaveric organ donation. The intervention required students to interact with a standardized patient for approximately 10 minutes and respond to questions posed about organ donation in a primary care context. A coding scheme for communication content was developed based upon students' accuracy and missed opportunities for educating patients. Data are presented for 2007 and 2008 first-year medical students (N=170) and results indicate several areas of students' missed opportunities for patient education including: (1) logistics of the state health care proxy, (2) timing of funeral arrangements, and (3) ability to choose organs for transplantation. The value of using standardized patients for communication training and health education/promotion is discussed.

Contextual and family factors associated with negative assessment of children's health

The health and well-being of children are intimately linked to their families' physical, emotional and social circumstances. Evaluation of children's health has most often been based on parental responses. This work investigates whether proxy health, family context and household factors are associated with child's poor health reported by parental figures. Data of 32,688 children of three age-strata (0-5; 6-11; 12-17 years) were obtained from a representative survey in Brazil in 2003. The analyses used generalized estimation equations to examine the association between having a bad health evaluation and the following factors grouped as: children/adolescents characteristics, history of child's health care use, proxy characteristics and family and household factors. Over 60% of the questionnaires were answered by the child's mother, with no significant difference among age groups. The proportion of children who had their health rated as bad decreased with age and was greater among males in all age groups (9.7%; 7.5%; 6.7% vs. 6.8%; 6.6%; 6.3%). The final model shows that household income per capita is inversely related to child's bad health in all age groups. Additionally, parent/proxy bad self-rated health is strongly and directly associated with child's bad health and is not explained by measures of the child's health or by the proxy's lack of education or a family's low income. The number of medical visits by the child in past year is also inversely associated with bad health. Results reinforce the importance of the household context to child's health and the association between parental figures and child health.

The Challenge of Applying Advance Directives in Hospital Practice

Critically ill elderly patients facing crucial decisions about their future medical treatment routinely come under the care of hospital physicians who may have no previous relationship with them or their families. The majority of patients for whom this sort of decision must be made are unable to participate in decision making because of dementia, delirium, or both. They are desperately ill, often with a new medical problem with which they have had little time to come to terms. Hospital physicians must rely on advance directives—either a living will, health care proxy, or both—to make decisions. Translating advance directives into practice is a challenging and complex process that is best approached carefully and systematically.

Advance directives and do-not-resuscitate orders in patients with cancer with metastatic spinal cord compression: advanced care planning implications.

Communication about end-of-life decisions is crucial. Although patients with metastatic spinal cord compression (MSCC) have a median survival time of 3 to 6 months, few data are available concerning the presence of advance directives and do-not-resuscitate (DNR) orders in this population. The objective of this study was to determine presence of advance directives and DNR order among patients with MSCC. We retrospectively reviewed data concerning advance directives for 88 consecutive patients with cancer who had MSCC and required rehabilitation consultation at The University of Texas M. D. Anderson Cancer Center from September 20, 2005 to August 29, 2008. We characterized the data using univariate descriptive statistics and used the Fisher exact test to find correlations. The mean age of this patient population was 55 years (range, 24-81). Thirty patients (33%) were female. Twenty patients (23%) had a living will, 27 patients (31%) had health care proxies, and 10 patients (11%) had either out-of-hospital DNR order and/or dictated DNR note. The median survival time for these patients was 4.3 months. Despite strong evidence showing short survival times for MSCC patients, it seems many of these patients are not aware of the urgency to have an advance directive. This may be an indicator of delayed end-of-life palliative care and suboptimal doctor-patient communication. Using the catastrophic event of a diagnosis of MSCC to trigger communication and initiate palliative care may be beneficial to patients and their families.

The Rewards of Family Communication

The Rewards of Family Communication

A literature review: Advance directives and patients with implantable cardioverter defibrillators

The purpose of this literature review is to describe the severity of and susceptibility for negative outcomes in patients with implantable cardioverter defibrillators (ICDs) who lack advanced directives. A comprehensive review of literature was conducted with articles selected from CINAHL, Pubmed, Ovid, Medline, evidence-based medicine, evidence-based nursing, and the Web of Science from 1990 to the present. Key words such as ICD, randomized controlled trials, case studies, advanced directives, end-of-life, living will, health care proxy, and durable power of attorney were used to identify specific studies. Advanced directives are becoming an essential part of care for the ICD population. The recommendations in the literature suggest that clinicians should initiate end-of-life discussions with their patients when they are healthy. The patients' preferences should be discussed often in patient care in case they would like changes made to their advance directive as their condition changes. Implementation of advanced directives in patients' medical care will need to be encouraged in the event of illness. Advanced practice nurses can provide clear explanations of patients' treatment choices in outpatient and inpatient settings.

Marriage and Bourgeois Respectability

Feminist critics of the institution of marriage point to its tendency to reproduce and solidify a gendered division of labor, norms of dependency and protection, and mandated monogamy. While I support the feminist call for a decoupling of state benefits, such as rights to health care and legal proxy, from the institution of marriage in light of discrimination against same-sex couples who are denied the right to marry, in this essay I draw attention to a separate but related issue. I focus here on what I consider one of the most troubling aspects of marriage for feminists, one highlighted by Simone de Beauvoir in her classic and still timely critique of marriage in The Second Sex (1952): the fact that marriage automatically confers bourgeois respectability on its participants. Even as we oppose antigay marriage legislation and recognize that marriage can protect vulnerable parties by guaranteeing health care, equity upon divorce, tax benefits, and so forth, feminists must continue to refuse the bourgeois respectability that is so deeply linked with the institution of marriage. Having the state accord legitimacy to some kinds of intimate relationships and consensual sex, but not others, goes against basic ideas of feminist freedom articulated most convincingly, I argue, by Beauvoir. While arguing this position, however, I will also ask whether only the relatively privileged are able to refuse the bourgeois respectability that marriage promises.

Effectiveness of preventive oral health care in Hispanic children living near US–Mexico border

The effect of preventive oral healthcare on dental caries in Hispanic children in a school district near the US-Mexico border in Texas was studied. We collected socioeconomic and demographic data for enrolled students through a written survey of parents. The information was linked to screening data for students in the same school that had been collected during a previously completed teledentistry demonstration project. The presence of dental sealants served as a proxy for preventive oral healthcare. We compared the effect of sealant presence on caries. The student population was 97.5% Hispanic and 82% were economically disadvantaged. Forty-four percent of the children in our study sample had caries. The prevalence of sealants was 19%; 32% is the national average. The results of regression models confirm the hypothesis that preventive services significantly reduce the occurrence of dental caries (OR = 0.241, P < 0.01). Higher household income (OR = 0.437, P < 0.05) and parent health insurance (OR = 0.497, P < 0.05) were also associated with reduced caries incidence. Our study suggests that preventive services reduce the incidence of caries in Hispanic children in the study population.

When In Loco Parentis Gets a Little Crazy

When In Loco Parentis Gets a Little Crazy

Mood and Anxiety Symptoms among Advanced Cancer Patients: Kids Matter (720)

Objectives 1. Recognize that patients with metastatic spinal cord compression have limited life span. 2. Recognize that very low percentage of patients with metastatic spinal cord compression had advanced care plan in a tertiary cancer center. 3. Discuss the urgency to initiate an earnest and close dialogue between the treating physician and his patient. I. Background. End-of-life communication is crucial because most U.S. hospitals implement cardiopulmonary resuscitation (CPR) in the absence of do-not-resuscitate directives (DNRs). Metastatic spinal cord compression (MSCC) has a median survival time of 3e6 months; yet there is little DNR utilization data in this population. II. Research Objectives. The objective of this study was to determine DNR utilization patterns in cancer patients with MSCC. III. Methods. A retrospective database analysis (March 2003eJune 2008) of DNR data for 88 cancer patients who had MSCC and required rehabilitation consultation at M. D. Anderson Cancer Center (MDACC) was performed. IV. Results. The mean age of this patient population was 54-years-old (range 14e81). Thirty patients were female (33%), 20 patients (23%) had a living will, 27 patients (31%) had identified a healthcare proxy, and 5 patients (6%) had DNR directives. The median survival for these patients was 4.2 months. V. Conclusion. Even with strong evidence showing the median life span of MSCC patients is 3e6 months; it seems many patients are not aware of the urgency to have an advance directive. This may be an indicator of delayed end-of-life palliative care and suboptimal doctor-patient communication. Using this catastrophic event to trigger communication and initiate palliative care may be beneficial. VI. Implications for Research, Policy, or Practice. Clinicians can be better equipped with evidence on cancer patients’ prognosis and apply it when initiating end-of-life conversations with cancer patients.