Shared decision making in inflammatory bowel disease: helping patients understand the tradeoffs between treatment options

The treatment of inflammatory bowel disease is becoming more complicated with new medications and new treatment paradigms. Although data are accumulating that the earlier use of immunomodulators and anti-tumor necrosis factor agents are more effective than the standard "step-up" pyramidal treatment algorithm, patients may not be comfortable with this more intensive therapeutic approach. The process of shared decision making engages patients in treatment decisions to optimize the chance that a chosen therapy matches their personal preferences for care. Decision aids are standard shared decision making tools, which are used to present evidence-based data in a patient-friendly manner to help patients with preference-sensitive decisions. Not all care decisions are preference-sensitive, and not all patients are interested in being part of a shared medical decision. The responsibility of the provider is to identify how much of a role patients want, and then determine which decisions need their input to provide the best patient-centered care. The overall goal is to involve patients in decisions so that they are educated about their options, confident in the plan, adherent to chosen therapy and ultimately have a better quality of life.     

Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives

BACKGROUND: Past research has documented that primary care physicians and family members are often inaccurate when making substituted judgments for patients without advance directives (ADs). This study compared the accuracy of substituted judgments made by primary care physicians, hospital-based physicians, and family surrogates on behalf of elderly outpatients and examined the effectiveness of ADs in improving the accuracy of these judgments. PARTICIPANTS AND METHODS: Participants were 24 primary care physicians of 82 elderly outpatients, 17 emergency and critical care physicians who had no prior experience with the patients, and a baseline comparison group of family surrogates. The primary outcome was accuracy of physicians' predictions of patients' preferences for 4 life-sustaining treatments in 9 hypothetical illness scenarios. Physicians made substituted judgments after being provided with no patient AD, patient's value-based AD, or patient's scenario-based AD. RESULTS: Family surrogates' judgments were more accurate than physicians'. Hospital-based physicians making predictions without ADs had the lowest accuracy. Primary care physicians' accuracy was not improved by either AD. Accuracy and confidence in predictions of hospital-based physicians was significantly improved for some scenarios using a scenario-based AD. CONCLUSIONS: Although ADs do not improve the accuracy of substituted judgments for primary care physicians or family surrogates, they increase the accuracy of hospital-based physicians. Primary care physicians are withdrawing from hospital-based care in growing numbers, and emergency medicine and critical care specialists most often are involved in decisions about whether to begin life-sustaining treatments. If ADs can help these physicians better understand patients' preferences, patient autonomy more likely will be preserved when patients become incapacitated.     

Cross-cultural similarities and differences in attitudes about advance care planning

OBJECTIVE: Culture may have an important impact on a patient's decision whether to perform advance care planning. But the cultural attitudes influencing such decisions are poorly defined. This hypothesis-generating study begins to characterize those attitudes in 3 American ethnic cultures. DESIGN: Structured, open-ended interviews with blinded content analysis. SETTING: Two general medicine wards in San Antonio, Texas. PATIENTS: Purposive sampling of 26 Mexican-American, 18 Euro-American, and 14 African-American inpatients. MEASUREMENTS AND MAIN RESULTS: The 3 groups shared some views, potentially reflecting elements of an American core culture. For example, majorities of all groups believed "the patient deserves a say in treatment," and "advance directives (ADs) improve the chances a patient's wishes will be followed." But the groups differed on other themes, likely reflecting specific ethnic cultures. For example, most Mexican Americans believed "the health system controls treatment," trusted the system "to serve patients well," believed ADs "help staff know or implement a patient's wishes," and wanted "to die when treatment is futile." Few Euro Americans believed "the system controls treatment," but most trusted the system "to serve patients well," had particular wishes about life support, other care, and acceptable outcomes, and believed ADs "help staff know or implement a patient's wishes." Most African Americans believed "the health system controls treatment," few trusted the system "to serve patients well," and most believed they should "wait until very sick to express treatment wishes." CONCLUSION: While grounded in values that may compose part of American core culture, advance care planning may need tailoring to a patient's specific ethnic views.     

Advance care planning and health care preferences of community-dwelling elders: the Framingham Heart Study

OBJECTIVE: The study objective was to describe self-reported advance care planning, health care preferences, use of advance directives, and health perceptions in a very elderly community-dwelling sample. METHODS: We interviewed surviving participants of the original cohort of the Framingham Heart Study who were cognitively intact and attended a routine research examination between February 2004 and October 2005. Participants were queried about discussions about end-of-life care, preferences for care, documentation of advance directives, and health perceptions. RESULTS: Among 220 community-dwelling respondents, 67% were women with a mean age of 88 years (range 84-100 years). Overall, 69% discussed their wishes for medical care at the end of life with someone, but only 17% discussed their wishes with a physician or health care provider. Two thirds had a health care proxy, 55% had a living will, and 41% had both. Most (80%) respondents preferred comfort care over life-extending care, and 71% preferred to die at home; however, substantially fewer respondents said they would rather die than receive specific life-prolonging interventions (chronic ventilator [63%] or feeding tube [64%]). Many were willing to endure distressing health states, with fewer than half indicating that they would rather die than live out their life in a great deal of pain (46%) or be confused and/or forgetful (45%) all of the time. CONCLUSIONS: Although the vast majority of very elderly community-dwellers in this sample appear to prefer comfort measures at the end of life, many said they were willing to endure specific life-prolonging interventions and distressing health states to avoid death. Our results highlight the need for physicians to better understand patients' preferences and goals of care to help them make informed decisions at the end of life.     

Resuscitating advance directives

Advance directives have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients. Many legal requirements and restrictions concerning advance directives are counterproductive. Requirements for witnessing or notarizing advance directives make it difficult for patients to complete a written directive during a physician visit. State laws that establish a hierarchy of family surrogates for incompetent patients who have not appointed a proxy are inflexible and may not apply to common clinical situations. Advance directives would be more useful if they emphasized discussing end-of-life care with physicians rather than completing a legal document. State laws should be revised to encourage patients to discuss advance directives with physicians and to complete them during an office visit. Such patient-physician discussions about end-of-life care can lead to more informed patient decisions. Procedures for written advance directives should be simplified. Patients should be able to designate health care proxies through oral statements to physicians. These reforms will encourage discussions between patients and physicians about advance directives and may lead to more informed decisions near the end of life.     

Quality Improvement in End-of-Life Critical Care

Patients, clinicians and policy makers are increasingly interested in measuring and improving the quality of health care at the end of life. The intensive care unit (ICU) is characterized by high mortality and frequent use of life-sustaining treatments, making critical care a natural target for these efforts. Indeed, multiple local and regional quality improvement efforts now specifically target the dying experience for ICU patients, patients at risk for ICU admission, and their families. These activities either target ICU caregivers through educational programs and quality incentives, or target patients and their families directly through palliative care and efforts to improve decisions around the end of life. Although these initiatives hold great promise, they also face inherent challenges-it is difficult to measure the quality of end-of-life care, we lack practical targets for affecting quality, and uncertain political climates can often preclude serious discussions about end-of-life care. Moreover, these programs may lead to unintended consequences, potentially negatively impacting the very care they seek to improve. Future innovations surrounding how we measure the quality of end-of-life care and paradigm shifts in the way we think about ICU quality may help us to fully realize the goal of improving the dying process for ICU patients.     

The development of outpatient Clinical Glidepaths

For clinicians who are struggling with the complexities of medical decision-making, practice guidelines and evidence-based medicine (EBM) have become increasingly popular and have potential to positively influence the practice of medicine. Nevertheless, they have their limitations. Guidelines are often rigid, based solely on age, and usually do not take into account a patient's comorbidities, life expectancy, and nonmedical preferences. EBM studies may not always include particular patient populations commonly seen by the geriatric clinician (e.g., studies on lipid-lowering agents or antihypertensive drug usually exclude the very old or patients who are frail, demented, or at the end of life). These limitations have made it difficult for geriatric clinicians to use these guidelines because of the need to individualize evaluation and treatment approaches and take into account the varied preferences of their older patients. The purpose of this paper is to present an alternative model of care for geriatric clinicians called The Clinical Glidepaths. The Clinical Glidepaths are outpatient tools intended to assist geriatric clinicians in their decision-making process. They are based on the following principles. (1) Clinicians need guidance concerning many different types of patients, not rigid guidelines based solely on age. (2) EBM should be used but has some limitations of which to be aware. (3) Clinical experience, which emphasizes individual outcomes instead of populations, is an important component of medical decisions. (4) There needs to be room for patient preferences in medical decision-making. (5) An approach to patients based on probable life expectancy and function, instead of age, will be more applicable and useful. (6) Making a useful tool will focus on common problems seen in every day geriatric practices.     

The need for safeguards in advance care planning

The recent uproar about Medicare “death panels” draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally incapacitated patient when choices about life-sustaining treatments are encountered, but the safety of this procedure has not received deserved scrutiny. Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients’ wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. Key targets for research include: how to improve completion rates for person wanting advance care directives, especially among minorities; more effective and standardized approaches to advance care planning discussions, including how best to present prognostic information to patients; methods for training clinicians and others to assist patients in this process; and systems for assuring that directives are available and up-to-date.     

Ethical issues in the chronically critically ill patient

The chronically critically ill are a challenging population of patients. Their mortality rate is high and expected functional status is low. The physician responsible for the care of these patients often is conflicted because the gains experienced by these patients may be small or absent whereas the pressure by society to use medical resources better is great. This pressure leads to the need for making difficult decisions on issues ranging from the initiation of acute care to withholding and withdrawing of care at the end of life. By understanding the ethical principles that govern decision-making, the physician can guide patients and their families toward realistic expectations.     

Shared Decision Making and Effective Communication in Heart Failure—Moving from “Code Status” to Decisional Readiness

Despite advances in treatment options, heart failure (HF) remains a progressive, symptomatic, and terminal disease for a large number of patients. The need for enhanced discussions regarding prognosis and goals of care has been recognised by multiple professional societies and public health policy, yet these conversations rarely occur in a timely manner. Shared decision making (SDM) is the process through which clinicians and patients work toward treatment decisions that are aligned with the patients’ values, goals, and preferences. SDM is especially appropriate when treatments carry an uncertain benefit and potential risk, and it emphasises the fact that neither medical evidence nor patient values alone can determine the best treatment for a patient. The foundation of these discussions should focus on a general understanding of disease trajectory and prognosis, with a clear acknowledgment of prognostic uncertainty. These discussions should include not only the risks of death but also the potential burden of worsening symptoms and decreased quality of life. The goal of these discussions should not be to rule in or rule out specific therapies in a future hypothetical scenario, but instead to prepare our patients and their loved ones to make “in-the-moment” treatment decisions when faced with an acute decompensation, taking into context the state of their illness at that time.     

Sexuality and Aging:

Previous research has been conducted regarding preferences of physicians for life-sustaining treatments for themselves, but there is a dearth of data on personal use of advance directives (ADs) by geriatricians specifically. Using a phone survey, we contacted all graduates of the geriatric fellowship program to assess their personal use of advance directives and their personal preferences for life-sustaining treatment. Of the 124 living graduates of the Parker Jewish Institute for Health Care and Rehabilitation, 70 agreed to participate. One third of respondents had established ADs for themselves, with higher rates in women than men (p = .054). Older geriatricians were significantly more likely to have advance directives (exact trend test yields, p < .0001). In general, respondents did not inform their health care providers about their desires for end-of-life care. This study revealed that the majority of fellowship-trained geriatricians did not formally establish advance directives for themselves. Further research is needed to determine whether physicians who establish advance directives for themselves are more likely to encourage their patients to do so.     

Associations of Advance Directive Knowledge,Attitudes, and Barriers/Benefits With Preferences for Advance Treatment Directives Among Patients With Heart Failure and Their Caregivers

BackgroundPatients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers.Methods and ResultsSeventy-one patient (mean age: 68 years)–caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087–0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care.ConclusionThe dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.     

Strategies for culturally effective end-of-life care

As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.     

Giving up on the objective of providing goal-concordant care: Advance care planning for improving caregiver outcomes

The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.     

Improving the long-term care referral process: insights from patients and caregivers

Large increases in the need for long-term care (LTC) services are expected as baby boomers age. Little has been published about patient and caregiver preferences for information about LTC. However, our qualitative research findings suggest that potential consumers may find it difficult to obtain accurate and timely information about LTC programs and services. In-person, semistructured interviews were conducted with 47 subjects, including patients (n = 25) within 90 days of their referral to a LTC placement (including NH, assisted living, home care, and community) and their caregivers (n = 22). Interview questions addressed the events that seemed to trigger their need for a LTC referral, the resources they used to become more informed about LTC options and the issues they confronted with the LTC referral process. Qualitative analyses identified a number of patient and informal caregiver-reported barriers to making decisions about LTC services, including insufficient information about LTC programs and community resources, unclear funding requirements and inadequate funding, and difficulty knowing how to plan for LTC or make LTC decisions. A potential solution may be an online LTC Guide designed to provide accurate information about the range of LTC services, with an emphasis on home and community-based services. This Guide was developed to address the gap in comprehensive LTC information identified in the findings of this study.     

Advance Directives: theoretical concept and practical significance in the USA

The article examines on the basic of empirical data the discrepancy between the theoretical demand and the practical role of advance directives. Often advance directives have no influence on medical decision-making in clinical care of critically ill patients. The vague language of the widely used standard living wills and the lack of physician-patient communication in the process of delivering an advance directives are contributing factors. However, many physicians even disregard patients' preferences in concrete and meaningful living wills at the end of life. Besides the lack of information many even seriously ill patients do not deliver an advance because they misjudge their medical prognosis and life expectancy. Often the communication between patients and doctors are blocked because they expect from the each other the first step to talk about end of life decisions and advance directives. In this context physicians claim lack of time, training in communication skills and their discomfort in talking about death and dying with their patients.     

Dialysis: prolonging life or prolonging dying? Ethical, legal and professional considerations for end of life decision making

There are over 7,000 people on dialysis in Australia and this is predicted to increase due to the ageing population and the high incidence of diabetes mellitus. Discontinuation of dialysis is the second most frequent cause of death in dialysis patients in Australia. Risk factors for the discontinuation of dialysis include: co-morbidities (especially diabetes mellitus) and being older. Because the decision to discontinue dialysis is a major life choice, collaborative decision making should be encouraged, and the patient needs assurances of the continuation of care and kindness, a palliative care plan, and the alleviation of suffering. Patients decide to discontinue dialysis because of an unacceptable quality of life, depression and a chronic failure to thrive. Health professionals need to support end of life decision making using an ethical decision framework. A review of current literature was undertaken and revealed a paucity of information in regard to palliation in those with end stage renal disease who had discontinued dialysis. The fear of dying, pain, suffering, and abandonment that a patient and/or their family may perceive as being associated with death may create barriers to decisions to discontinue with dialysis treatments. Therefore health care personnel should provide information with honesty to allow patients to predict their quality of life and death. Support for the patient and family during the dying period should be multi-disciplinary, with clear and timely communication between all members of the team.     

What outcomes matter to patients?

OBJECTIVE: This study estimates the relative value to patients of physical, mental, and social health when making treatment decisions. Despite recommendations to use patient preferences to guide treatment decisions, little is known about how patients value different dimensions of their health status. DESIGN: Cross-sectional data from quasi-experimental, prospective study. SETTING: Forty-six primary care clinics in managed care organizations in California, Texas, Minnesota, Maryland, and Colorado. PATIENTS: Consecutive adult outpatients (n = 16,689) visiting primary care providers. MEASUREMENTS AND MAIN RESULTS: Medical Outcomes Study 12-Item Short Form (SF-12) health-related quality of life and patient preferences for their current health status, as assessed by standard gamble and time trade-off utility methods, were measured. Only 5% of the variance in standard gamble and time trade-off was explained by the SF-12. Within the SF-12, physical health contributes substantially to patient preferences (35%-55% of the relative variance explained); however, patients also place a high value on their mental health (29%-42%) and on social health (16%-23%). The contribution of mental health to preferences is stronger in patients with chronic conditions. CONCLUSIONS: Patient preferences, which should be driving treatment decisions, are related to mental and social health nearly as much as they are to physical health. Thus, medical practice should strive to balance concerns for all three health domains in making treatment decisions, and health care resources should target medical treatments that improve mental and social health outcomes.     

Resident approaches to advance care planning on the day of hospital admission

BACKGROUND: Advance care planning is the process of establishing a patient's goals and preferences for future care. Previous research has demonstrated a need to improve patient-physician communication around advance care planning. A critical time for advance care planning conversations is the day of admission to the hospital. METHODS: A survey of internal medicine residents was administered at Duke University Medical Center and the Brigham and Women's Hospital, 2 major academic teaching centers. Residents were questioned about their approaches to advance care planning on their last on-call admitting day. RESULTS: Of 347 residents solicited, 292 (84.1%) participated in the survey. Residents reported that they established preferences for cardiopulmonary resuscitation (CPR) with 70.5% of patients, established a health care proxy with 33.7% of patients, discussed goals and values concerning end-of-life care with 32.0% of patients, and asked 35.6% of patients if they had an advance directive. Although 89.0% of residents had observed an advance care planning discussion model, only 66.4% had received teaching and 36.6% had received feedback about advance care planning conversations. In multivariable analysis, having received feedback about advance care planning conversations was associated with a higher percentage of conversations about health care proxy and goals and values related to the end of life. CONCLUSIONS: Residents discuss patient preferences for CPR on the day of admission with most patients. Preparing residents, particularly through feedback, may improve communication around other elements of advance care planning.