Incapacitated Patients Research Articles

A New Standard for Incapacitated Patient Decision Making: The Clinical Standard of Surrogate Empowerment

Founded upon the primacy of the principle of respect for autonomy, three methods of surrogate decision making traditionally have been promoted to help the family and friends of incapacitated patients. Unfortunately, the standards of advance directives, substituted judgment, and best interests are often inadequate in practice. Studies report that few patients have formal, written advance directives; that patients often change their minds about treatment over time; that many patients are simply not ready or willing to plan ahead--in part, because some patients and families simply don't believe in autonomy; that those patients who do plan ahead often do not communicate their plans; and that while some patients want their directives followed strictly, many prefer that their surrogates use judgment in making decisions. After reviewing articles describing a variety of alternative approaches, a new clinical standard of surrogate empowerment is proposed to reconcile and integrate these observations and concepts. The "procedure" for this clinical standard is presented.

Legal Briefing: POLST: Physician Orders for Life-Sustaining Treatment

This issue's "Legal Briefing" column covers recent legal developments involving POLST (physician orders for life-sustaining treatment.) POLST has been the subject of recent articles in JCE. It has been the subject of major policy reports and a recent New York Times editorial. And POLST has been the subject of significant legislative, regulatory, and policy attention over the past several months. These developments and a survey of the current landscape are usefully grouped into the following 14 categories: 1. Terminology. 2. Purpose, function, and success. 3. Status in the states. 4. Four legal routes of implementation. 5. Which professionals can authorize POLST? 6. Is the patient's signature required? 7. Can surrogates consent to for incapacitated patients? 8. If a POLST conflicts with an advance directive, which prevails? 9. Is offering POLST mandatory? 10. What are the duties of healthcare providers? 11. What is the role of electronic registries? 12. What is the role of the federal government? 13. International adoption. 14. Court cases.

Honoring Patient Care Preferences: Surrogates Speak

A growing body of evidence has pointed to the stressful experience surrounding surrogate decision-making on behalf of incapacitated patients. This study (N = 59) asked surrogates to speak about their experiences immediately after having made a life-sustaining treatment decision. Grounded theory analysis revealed four themes: (1) the emotional impact of the decision-making process on the surrogate; (2) the difficulty of watching a loved one's health deteriorate; (3) the importance of having a Living Will (LW) or other written/verbal instructions; and (4) the reliance on spirituality as a means of coping with the surrogate experience. Findings of this study suggest that engaging surrogates at the time of patient admission may be essential in order to clarify patient preferences and strengthen communication between surrogates and the interdisciplinary healthcare team.

‘In a twilight world’? Judging the value of life for the minimally conscious patient

The recent ruling from England on the case of M is one of very few worldwide to consider whether life-sustaining treatment, in the form of clinically assisted nutrition and hydration,...

Advance Care Planning Safeguards

The Authors Reply—Drs. Ahluwalia and Gordon are correct that I identified the goal of advance care planning as promoting the autonomy of decisionally incapacitated patients when they face choices about life-sustaining treatments.1 This is the primary objective of advance care planning as regularly stated in the clinical and popular literature, both historically and currently, and even as implied in parts of their letter. Congruence between patient values and the care they receive if mentally incapacitated at the end of life has been the litmus test for the success of advance care planning. However, such authors as Fried2 and Sudore3 have proposed other advance care planning goals, particularly promotion of earlier and better discussions about life-sustaining treatments among patients, their families, and their professional care givers. Earlier communication about such matters might lead to more frequent and deeper discussion about end-of-life care, and could be relevant to patients who are decisionally competent when facing choices about life-sustaining treatments. Theoretically, advance care planning could foster a clinician–patient relationship that better attends to patients’ values, goals, and preferences, while preparing patients and families to make better decisions when actually faced with end-of-life choices. However, as summarized in my article, poor quality of communication about advance care planning is common and potentially perilous for patients, while evidence for the effectiveness of advance care planning in promoting patient autonomy near the end of life is lacking,4 so this attractive new hypothesis requires careful study. Regardless of which goals of advance care planning are featured, safeguards, as reviewed in my article and by the authors, are needed to protect patients from a host of hazards from this procedure. Without improving the quality of advance care planning discussions (e.g., assuring the provision of understandable and accurate prognostic information that addresses functional outcomes) or figuring out what kinds of discussions are appropriate through different stages of health,5 we inadvertently may be doing harm.

Advance Care Planning Safeguards

To the Editors:—We read with interest the recent article by Dr. Billings.1 In the article, Dr. Billings defines the goal of advance care planning as promoting the autonomy of decisionally incapacitated patients in decision-making about life-sustaining treatment, and cites public fears about restricting life-sustaining treatment as evidence for implementing certain safeguards in advance care planning, such as erring on the side of preserving life when advance directives are unclear. However, a broader conceptualization of advance care planning as the process by which patients can receive preference-concordant care over the course of a serious illness,2 including but not limited to life-sustaining treatment, makes advance care planning relevant to more patients. We believe that this frame for advance care planning may shift public and political attention away from fears about restricting treatment, and toward increasing access to patient-centered care overall. Defining the goal of advance care planning as providing preference-concordant care through the trajectory of an illness requires a different set of safeguards, including 1) having early and repeated patient-provider discussions about values of care within the context of the patient’s illness trajectory; 2) identifying ways to usefully translate broad values into specific preferences at the time of decision-making; 3) encouraging a re-evaluation of documented preferences with changing clinical and personal circumstances; and 4) implementing a system-wide transportable and flexible method of preference documentation that more adequately reflects patients’ values than traditional advance directives. A first step in achieving this vision of advance care planning includes helping patients clarify and articulate their underlying values for care and thereby identifying specific treatment preferences. Clinicians might facilitate this goal with multiple, brief, discussions about patients’ reflections and feelings regarding health states, as personally experienced or observed.3 While the relevance of advance care planning might be most apparent when decisions about life-sustaining treatment need to be made, we suggest a focus on the process of consideration, evaluation and discussion of values and preferences rather than towards the life or death decision itself. Such a shift within the medical community in thinking and practice, we believe, will have the effect of positively shifting public opinion about advance care planning and would support patient-centered care in serious illness.

The facilitated values history: helping surrogates make authentic decisions for incapacitated patients with advanced illness.

Many patients who develop incapacitating illness have not expressed clear treatment preferences. Therefore, surrogate decision makers are asked to make judgments about what treatment pathway is most consistent with the patient's values. Surrogates often struggle with such decisions. The difficulty arises because answering the seemingly straightforward question, "What do you think the patient would choose?" is emotionally, cognitively, and morally complex. There is little guidance for clinicians to assist families in constructing an authentic picture of the patient's values and applying them to medical decisions, in part because current models of medical decision making treat the surrogate as the expert on the patient's values and the physician as the expert on technical medical considerations. However, many surrogates need assistance in identifying and working through the sometimes conflicting values relevant to medical decisions near the end of life. We present a framework for clinicians to help surrogates overcome the emotional, cognitive, and moral barriers to high-quality surrogate decision making for incapacitated patients.

Temperament and character in relation to sick leave duration in mentally disordered outpatients—the downside of novelty seeking and cooperativeness

In 1254 mentally disordered outpatients (941 women, 313 men) length of sick leave in the preceding 12 months was documented (median 2 weeks) and axis I and axis II disorder (SCID screening, clinical interview), psychological distress (SCL-90-R), work-related distress and personality (Temperament and Character Inventory (TCI)) were assessed. Compared to healthy controls (N=152) patients scored lower on self-directedness and higher on harm avoidance. Longer incapacitated patients were more often female. On the basis of absence duration (<2 weeks; ≥2<4 weeks; ≥4 weeks) male and female patients were analysed separately. Main findings showed that women longer on sick leave scored significantly higher on novelty seeking and cooperativeness. Further analysis yielded a significant contribution of personality dimensions, including novelty seeking and cooperativeness to work-related distress in women, explaining 21.5% of variance. An association between lower formal education, older age and duration of work incapacity could only be confirmed in male patients. Personality-based difficulties in adequate distancing from professional demands, as well as personality-based problems in interpersonal conflict management, are discussed as possible explanations for study findings.

Need(le)less Worry

Incapacitated patients must be treated in their best interests according to the Mental Capacity Act 2005. As a result of this statute, the General Medical Council has advised that the testing of incapacitated source patients for HIV following occupational needlestick injury is unlawful. In this article, the reasons for the introduction of the Act are outlined and the impact of the legislation on the profession discussed. It is argued that it is in the patient's medical best interests to know if they are HIV positive so that they can be treated appropriately whilst they are incapacitated on ICU and begin timely medical therapy. It is in their social, emotional, cultural and religious best interests to be tested so that they can alleviate the anxiety of the injured healthcare worker, change their behaviour to avoid further spread and contribute to wider society as a ‘good egg’. It is concluded that the GMC has misunderstood the meaning of best interests and that their advice should be revised to allow testing to occur.

Jam today: the law and ethics of covert medication

Covert administration of medication has always been controversial and has not always been specified in care plans, it should be limited to incapacitated patients where the treatment is necessary and in best interests, or else authorised by mental health legislation or an appropriate court declaration. A lot of nursing and HCA practice that involves putting medication in food or drink may not actually be disguising it from the patient at all. The NMC guidelines do not refer to the Mental Capacity Act and are due for review, meanwhile the Maudsley Prescribing Guidelines are recommended. It is vital that HCAs and APs who administer or assist with medication understand their legal and ethical authority for hiding it, and reviewing the reasons with the wider team.

Communication Commentary: Psychiatric Advance Directives

Communication Commentary: Psychiatric Advance Directives

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.

The Facilitated Values History: Helping Surrogates Make Authentic Decisions for Incapacitated Patients with Advanced Illness

The Facilitated Values History: Helping Surrogates Make Authentic Decisions for Incapacitated Patients with Advanced Illness

Emergency Management of Acute Ischemic Stroke in Incapacitated Patients Who Have No Surrogate Decision Makers

When hospitalized patients with acute ischemic stroke are unable to make their own medical decisions, clinicians usually turn to advance directives and the patient's close family members and friends to define the patient's wishes and expectations regarding treatment and prognosis. In many jurisdictions, if there is no surrogate for an incapacitated patient, an emergency ethics or risk management consultation is advisable and is usually done with a representative of the hospital's law office. The ethics team can represent the patient's interests by hearing the recommendations of the treating physicians and then deciding whether their recommended treatment plan is ethically permissible and in the patient's interests. Depending on the jurisdiction, it is sometimes necessary for the courts to appoint a guardian for incapacitated patients who have no surrogate decision makers available.

Mental health legislation and human rights in England, Wales and the Republic of Ireland

In 2005, the World Health Organization (WHO) published its Resource Book on Mental Health, Human Rights and Legislation (Geneva: WHO) presenting a detailed statement of human rights issues which need to be addressed in national legislation relating to mental health. The purpose of this paper is to determine the extent to which revised mental health legislation in England, Wales (2007) and Ireland (2001) accords with these standards (excluding standards relating solely to children or mentally-ill offenders). Legislation in England and Wales meets 90 (54.2%) of the 166 WHO standards examined, while legislation in Ireland meets 80 standards (48.2%). Areas of high compliance include definitions of mental disorder, relatively robust procedures for involuntary admission and treatment (although provision of information remains suboptimal) and clarity regarding offences and penalties Areas of medium compliance relate to competence, capacity and consent (with a particular deficit in capacity legislation in Ireland), oversight and review (which exclude long-term voluntary patients and require more robust complaints procedures), and rules governing special treatments, seclusion and restraint. Areas of low compliance relate to promoting rights (impacting on other areas within legislation, such as information management), voluntary patients (especially non-protesting, incapacitated patients), protection of vulnerable groups and emergency treatment. The greatest single deficit in both jurisdictions relates to economic and social rights. There are four key areas in need of rectification and clarification in relation to mental health legislation in England, Wales and Ireland; these relate to (1) measures to protect and promote the rights of voluntary patients; (2) issues relating to competence, capacity and consent (especially in Ireland); (3) the role of “common law” in relation to mental health law (especially in England and Wales); and (4) the extent to which each jurisdiction wishes to protect the economic and social rights of the mentally ill through mental health legislation rather than general legislation. It is hoped that this preliminary analysis of mental health legislation will prompt deeper national audits of mental health and general law as it relates to the mentally ill, performed by multi-disciplinary committees, as recommended by the WHO.

Mired in confusion: making sense of the Deprivation of Liberty Safeguards

There is uncertainty about how to identify deprivation of liberty and the interface of the Mental Health Act and Mental Capacity Act Safeguards. OBJECTIVE To increase current understanding by exploring how an expert legal panel interpret existing case law relating to deprivation of liberty in the clinical setting. Design Clinical vignettes of real patients were used to explore lawyers' thinking about important factors that: (1) distinguish lawful restriction from deprivation of liberty and (2) govern the choice between safeguard regimes when there is deprivation of liberty. The relative importance of such factors was discussed in a consensus meeting using a modified nominal group approach. Participants and setting Six eminent barristers and solicitors with expertise in mental health law attended a consensus meeting after making individual judgements about vignettes describing the situations of 28 incapacitated patients who had been admitted informally to a range of psychiatric inpatient units in South East London. Lawyers attributed key importance to a patient's 'freedom to leave' and suggested that patients' subjective experiences should be considered when identifying deprivation of liberty. CONCLUSIONS Clarification of deprivation of liberty and its safeguards will develop with future case law. Based on current available case law, the lawyers' expert views represented a divergence from Code of Practice guidance. We suggest that clinicians give consideration to this.

Advance care planning under the Mental Capacity Act 2005 in primary care.

The past two decades have seen substantial change in the way medicine is practised in the UK, with a decisive shift away from paternalistic medicine. This has involved an increasing emphasis on the rights, views, and choices of patients, and on respect for their autonomy in decision making with regards to their health care. At the same time, however, has come the recognition that there are situations where patients are unable to make decisions for themselves; that is, where they lack capacity. Introduced in April 2007, the Mental Capacity Act 2005, in addition to defining the test for mental incapacity, is primarily intended to address this problem, establishing a framework for decision making on behalf of incapacitated patients, aiming to ensure that all decisions are made in such patients' best interests. In doing so, it places on statutory footing various elements of anticipatory decision making or advance care planning (ACP). Already practised for some time in the US, Canada and Australia, ACP is based on the belief that personal autonomy in decision making should be preserved wherever possible, and aims to give patients a way to continue to exercise their autonomy once they are unable to make decisions for themselves. ACP is now strongly promoted in UK healthcare policy,1 with professional guidance governing its use from both the Royal College of Physicians (RCP)2 and the General Medical Council (GMC).3 A means of clarifying decision making while empowering patients and enhancing choice,4 it may also provide financial benefits in reducing inappropriate hospital admissions and use of services.5,6 This article examines the concept of ACP as described in the Mental Capacity Act 2005 and recent professional guidance, looking at evidence of its benefits as well as providing practical information on its use, in order to …

Mental Capacity Act 2005 and Research

This article is the second of two describing the impact of the Mental Capacity Act on the practice of intensive care medicine in the UK. This article concentrates on the impact on clinical research. Intrusive research in incapacitated patients that does not involve trials of medicines or non-identifiable data is covered by the Act. Research must have Ethics Committee approval and must have some chance of benefiting the research subject or provide information about the disease without causing risk to the patient or being unduly invasive or restricting the patient's freedom. It is the responsibility of those engaged in clinical research to be aware of the requirements of the Act and to interpret and implement it appropriately.

The Best Interest Standard: Both Guide and Limit to Medical Decision Making on Behalf of Incapacitated Patients

In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to "guide" parents in making medical treatment decisions for their children. But he argues that the BIS is inappropriately used as a "limiting" standard to determine when to override those decisions. Specifically, Diekema contends that the BIS "does not represent the best means for determining when one must turn to the state to limit parental action." He argues that this limiting function should be served by the harm principle instead of by the BIS. I contend that we should not reassign the BIS's limiting function to the harm principle. In this article I make two arguments to support my position. First, the BIS has effectively served, and can serve, both guiding and limiting functions. Second, the harm principle would be an inadequate substitute. It cannot serve the limiting function as well as the more robust BIS.

The ethics of informed consent in Alzheimer disease research

Clinical research on Alzheimer disease (AD) is much needed but requires the participation of patients with substantial cognitive impairment who have difficulty providing informed consent. Despite decades of debate, policies regulating such research are not well-defined. Although numerous studies have underscored the difficulties of obtaining informed consent for clinical research from patients compromised by AD, there is also increasing evidence that such individuals and their surrogates can make decisions about research participation that are consistent with the patients' values. Policy discussions and future research should consider how the ethical reservations about enrolling incapacitated patients in research could be mitigated by developing ways to promote the congruence between surrogates' decisions and patients' values.