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BACKGROUND: The advance directive and lasting power of attorney are instruments to strengthen patients' autonomy. A hospital-based palliative care consultation service can advise patients and family members about these instruments. This study investigates the need for such consultation among patients with life-limiting illness. METHODS: This prospective observational study on intensive and non-intensive care units includes patients with a request for palliative care consultation. Patient-related factors were evaluated for their possible association with the presence or absence of advance directives or power of attorney. In addition, focus group interviews with members of the palliative care consultation team were carried out to identify barriers which prevent patients from drawing up such documents. RESULTS: A total of 241 oncological and 53 non-oncological patients were included with a median age of 67 years; 69 (23%) patients were treated in the intensive care unit (ICU). Overall, 98 (33%) patients had advance directives, and 133 (45%) had determined a legal health care proxy in advance. A total of 52 patients died in hospital (17.7%). Only age and relationship status were associated with directives. In interviews, the following barriers were identified: information deficit, concern regarding discontinuation of treatment, loss of autonomy and wish to avoid a burden for the family. CONCLUSION: The majority in this severely ill patient population lack advance directives. In order to remove barriers, more effective information and counseling is required about such directives. In particular, guidance should include potential clinical situations in which such directives are potentially beneficial.

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BACKGROUND: Living wills/advance directives (AD) are an important tool for specifying patient wishes regarding medical care in the case of future inability to consent. Since 2009, German legislation defines framework conditions for the creation and validity of such directives in § 1901a BGB. METHODS: An extensive literature search in an international and a German-language database was conducted to identify, analyze, and evaluate scientific articles on opportunities, risks, and problems in the creation and implementation of living wills. RESULTS: Between 10 and 40% of patients have an AD. Among the stipulations in the AD, the demand for sufficient pain therapy is very important. However, numerous problems in the preparation and implementation of ADs reduce their value in everyday clinical practice. In particular, unclear conditions of validity, unspecific instructions for action, and lack of availability of the directives prevent practitioners from determining the patient's will. Other fundamental problems include frequent patient ambivalence and clinical ethical dissent. In addition, the framework condition of unlimited coverage set by the law carries the risk that changes of opinion in the course of life or disease are not taken into account. CONCLUSION: Preparing an AD requires a high level of information, consultation, and time, as well as regular review or adjustment of its content. These factors are often not considered, thus complicating implementation and reducing the value of living wills. Possible solutions to these problems or alternative concepts for different patient settings are discussed in this review.

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Respect for the patient's right to self-determination and the professional medical assessment of the (continued) existence of a therapeutic prospect of success of the respective curative intervention ("indication") are the two central reference parameters of every medical therapeutic decision. This is particularly true in cases of a progressive, irreversible, fatal course of the disease. However, the assessment of the presumed will of the patient or the meaningfulness of curative (intensive care) prolongation of life frequently causes difficulties. The law cannot eliminate these doubts in each individual case; it does, however, provide a framework so that factually and ethically justified therapy decisions can be made in each case. In this function, this legal framework-no matter how much it must first be concretized in the respective decision case-demands strict observance. This also includes the most recent change in the law that went into effect on 1 January 2023, through the introduction of a statutory right of (emergency) representation for spouses.

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OBJECTIVES: Latino patients have been shown to engage in advance care planning (ACP) at much lower rates than non-Latino White patients. Coping strategies, such as the use of emotional support, may differentially relate to engagement in ACP among Latino and non-Latino patients. The present study sought to examine the moderating effect of ethnicity on the relationship between the use of emotional support as a coping strategy and completion of advance directives. METHODS: The present study employed a weighted sample (Nw = 185) of Latino and non-Latino White patient participants in Coping with Cancer III, an National Institutes of Health-sponsored, multisite, longitudinal, observational cohort study of patients with advanced cancer and their informal caregivers and oncology providers designed to evaluate Latino/non-Latino disparities in ACP and end-of-life cancer care. Main and interaction effects of Latino ethnicity and use of emotional support on patient use of advance directives were estimated as odds ratios. RESULTS: Use of emotional support was associated with dramatically lower do-not-resuscitate (DNR) order completion to a greater extent among Latino as compared to non-Latino patients (interaction AOR = 0.33, p = 0.005). Interaction effects were not statistically significant for living will or health-care proxy form completion. SIGNIFICANCE OF RESULTS: Use of emotional support is associated with lower odds of completing DNRs among Latino than among non-Latino patients. Seeking and/or receiving emotional support may deter Latino patients from completing DNR orders. Research is needed to address both emotional needs and practicalities to ensure high quality end-of-life care among Latino patients with cancer.

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INTRODUCTION: Our study aims to (1) examine the perspectives of young adults toward Five Wishes, and (2) measure their preferences related to personal, emotional, spiritual, and medical choices in end-of-life care planning. METHODS: Data were collected using a structured survey questionnaire and Five Wishes. Participants include graduate students (n = 30) attending a university in New York State. Bivariate summary statistics were performed to address the study aims. RESULTS: The average age of the participants was 24 years old; 60% were female, 60% White, and 27% Black. In the case of permanent and severe brain damage without the expectation to wake up or recover, 63% of the participants do not want life-support treatment. In the event of a coma without expectation to wake up or recover, 53% do not want life-support treatment. When close to death, 80% want to have religious or spiritual readings and well-loved - poems read aloud. CONCLUSION: Young adults are capable of making their own decisions about appointing a health care proxy and making choices for their personal, emotional, spiritual, and medical care for the future. The present findings intend to make contributions to the research pertaining to end-of-life care that promotes population-based healthcare decision-making, education, and awareness among young adults.

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Background: Advance care planning conversations and preparations do not occur as frequently as they should. Framing advance care planning as a health behavior and an opportunity for community engagement can help improve community-dwellers' intentions to have discussions and preparations regarding facing serious illness, death and dying.Methods: A multi-setting confidential pre/post paper survey assessing advance care planning discussions and preparation intentions was given to community-dwelling citizens residing in the New York metropolitan area. Survey items were adapted from a previous end of life survey to include questions on chronic illnesses, important conversations, comfort levels and concerns about end of life. The intervention was a 1-hour presentation on advance care planning (importance, laws, effective communication and audience questions)Results: Our study found significant interest in discussing advanced care planning across age groups. There were significant changes for participant intentions regarding: having conversations with loved ones, a health care proxy or similar document and none; as well as differences in participant intentions for discussions with caregiver, family, friends, primary physician and no-one.Conclusion: Educating individuals on the importance of advance care planning may be effective in changing community dwellers' intentions to start the conversation and put advanced care planning measures in place.Abbreviations: ACP: Advance Care Planning; CHAT: Conversations Health and Treatments; EoL: End of Life; HCP: Health Care Proxy; MOLST: Medical Orders for Life-Sustaining Treatments; PCP: Primary Care Physician.

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INTRODUCTION: As use of electronic portal communication with healthcare teams increases, processes that effectively recognize messages that contain critical information are needed. This study aims to evaluate whether certain language and other characteristics of patient portal messages are associated with expressions of self-harm and suicidal ideation. METHODS: Using patient portal messages sent between 1 January 2013 and 30 June 2017, we searched for words and letter combinations 'suicid' (to identify words suicide and suicidal), 'depress' (for depression, depressed, depressing), 'harm himself' (or 'herself 'or 'myself'), 'hurt himself' ('herself' or 'myself'), 'kill', 'shoot', 'cutting', 'knife', 'gun', 'overdose', 'over dose' and 'jump'. RESULTS: Of 831,009 messages, 11,174 messages contained one or more search terms. We manually reviewed 7,736 messages for content expressing self-harm or suicidality. Of the reviewed messages, 3.2% indicated thoughts of self-harm or suicide and 2.2% of messages suggested active suicidality. Of those expressing any thoughts of self-harm or suicide, 13.4% mentioned a specific plan, 20% were passively suicidal. Messages indicating thoughts of self-harm and suicide were more common in patients who were unmarried, non-white and younger than 18 years. Factors significantly associated with thoughts of self-harm were messages addressed to psychiatry or containing the letter combinations 'suicide', 'die', 'depress' and 'harm/hurt my/her/himself'. DISCUSSION: Certain letter combinations and patient portal message characteristics may be associated with expressions of self-harm and suicide. These factors should be considered as we develop systems of effectively screening patient portal messages for critical clinical information.

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Introduction: Proxies can communicate with health care teams through patient portals either by using proxy login credentials or a patient's login credentials. The frequency of proxies using patient login credentials is unknown. Methods: A random selection of 3,000 portal messages sent in through adult patients' own portal account was reviewed for indicators (referring to the patient in the third person) that someone other than the patient was using the patient portal account. Results: Of the reviewed 3,000 portal messages sent through patient portal accounts, 221 (7.4%) appeared to be sent in by a proxy, 2,512 (83.8%) appeared to have been sent in by the patient and for 266 (8.9%) portal messages reviewed it was unclear who sent in the message. There was no difference in mean age between patients who had proxy messages sent through patient portal accounts versus proxy portal accounts. Patients who had proxies send messages through patient accounts were more likely to be married and male. Out of 221 manually reviewed messages apparently sent by proxies through patient portal accounts there were 113 (51%) where the proxy included their name and 56 (25.3%) where they reported their relationship to the patient. During the study period, 0.7% of total messages on adult patients were sent through proxy accounts. Discussion: Proxies appear to use patient portal accounts much more frequently than proxy accounts to communicate with the health care team on adult patients; however, when using patient accounts they only identify themselves approximately half of the time.

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Objectives: As the homeless population ages, it is imperative to improve access to advance care planning (ACP) and document preferences in case medical decision-making capacity is lost. Methods: We implemented an ACP Project to discuss and document advance care plans with all patients aged 45 and older who received primary care at our adult Homeless Program clinics. Results: Over 14 months, ACP was discussed with 48% (n = 138) of the population and health care proxy (HCP) appointment with 91% (n = 125) of these patients. Most (62%; n = 77) appointed a HCP from personal relationships, though a significant minority (38%; n = 48) could not and were considered "surrogateless." End-of-life preferences varied. Approximately 20% of patients wanted to defer to a surrogate for each decision. Discussion: ACP is feasible in primary care for adults who have experienced homelessness and should be incorporated into routine care.

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BACKGROUND: Legal dispositions for advance care planning (ACP) are available but used by a minority of older adults in Switzerland. Some studies found that knowledge of and perception of those dispositions are positively associated with their higher usage. The objective of the present study is to test the hypothesis of an association between increased knowledge of ACP dispositions and a more positive perception of them. METHODS: Data collected in 2014 among 2125 Swiss community-dwellers aged 71 to 80 of the Lausanne cohort 65+ (Lc65+), a population-based longitudinal study on aging and frailty. Data collection was conducted through a questionnaire on knowledge, use and perception of lasting power of attorney, advance directives and designation of a health care proxy. Covariables were extracted from the Lc65+ database. Bivariable and multivariable regression analyses assessed the association between level of knowledge and perception. RESULTS: Half the participants did not know about legal dispositions for ACP; filing rates were 14% for advance directives, 11% for health care proxy and 6% for lasting power of attorney. Level of knowledge about the dispositions was associated with a more positive perception of them, even when adjusting for confounding factors. CONCLUSION: Although the direction of the association's causality needs more investigation, results indicate that better knowledge on ACP dispositions could improve the perception older people have of them. Communication on dispositions should take into account individual knowledge levels and address commonly enunciated barriers that seem to diminish with increased knowledge.

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CONTEXT: Little is known about advance care planning (ACP) among community-dwelling patients with dementia. OBJECTIVES: To describe aspects of ACP among patients with dementia and examine the association between ACP and health care proxy (HCP) acceptance of patients' illness. METHODS: Cross-sectional observational survey of 62 HCPs of patients with dementia (N = 14 mild, N = 48 moderate/severe), from seven outpatient geriatric and memory disorder clinics in Boston. Aspects of ACP included HCP's report of patients' preferences for level of future care, communication with HCP and physician regarding care preferences, and proxy preparedness for shared decision making. The association between ACP and HCP acceptance with patients' illness was examined using the Peace, Equanimity, and Acceptance subscale of the Cancer Experience Scale. RESULTS: Eleven percent of proxies believed that the patient would want life-prolonging treatment, 31% a time-limited trial of curative treatment, and 47% comfort-focused care. Thirty-one percent reported that the patient had communicated with their physician regarding preferences for care, and 77% had communicated with the HCP. Forty-four percent of HCPs wanted more discussion with the patient regarding care preferences. The HCP having discussed care preferences with the patient was associated with greater acceptance of the patient's illness (P = 0.004). CONCLUSION: Our findings support need for greater ACP discussions between patients and proxies. Discussions regarding goals of care are likely to benefit patients through delivery of care congruent with their wishes and HCPs in terms of greater acceptance of patients' illness.

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Questions from patients about pain conditions and analgesic pharmacotherapy and responses from authors are presented to help educate patients and make them more effective self-advocates. In response to a question about advance directives for a patient experiencing chronic pain, the authors discuss the importance of having legal documents in place.

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Seventy-five percent of Americans support the idea of Advance Directives (ADs) but less than 20% complete one, resulting in increased hospitalization costs, unwanted treatment, and difficult family decisions. Engaging community resources for public education may be effective for increasing understanding and completion of ADs. This project focused on workers in an agency serving older adults. A training program was developed with the goal of increasing their understanding of the process and benefits of Health Care Proxies (HCPs) and ADs through hands-on experience, increasing relevant skills and willingness to discuss with consumers, and to implement an agency protocol increasing documentation of HCPs for consumers. After a small proof-of-concept pilot, all staff members were asked to participate in the educational program. The pilot program delivery found increased staff knowledge as well as motivation to complete HCPs among the staff themselves and their own families. This program resulted in increased staff knowledge of EOL documents, willingness to engage in EOL discussions, and an increase in documented HCPs. This program has relevance for workers in other agencies as they engage older consumers to encourage completion of ADs. This experiential approach to staff education increased their understanding and willingness to initiate EOL discussion with consumers.

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The Basse-Normandie palliative care nurses' group carried out a survey regarding nurses' knowledge of the health care proxy and advance directives. The study revealed a lack of connection between these two arrangements, poor knowledge about advance directives but an understanding of the role of the health care proxy. How, therefore, can patients be effectively informed? How should they be supported in this process of determining themselves the conditions of their end of life?

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Learning how to speak with patients about end-of-life topics is often anxiety provoking for medical trainees. However, it also provides a unique opportunity for personal growth. The surprising reward of having such a conversation is presented in this reflection.

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PURPOSE: The French law allows the persons of age to appoint a trusted person and to draft advance directives in case they are one day in a condition that prevents them from expressing their will regarding their health care. Our study objective was to assess patients' and relatives' knowledge and collecting their opinion regarding these means of expression of their will. METHODS: An anonymous survey by self-administered questionnaire was conducted in the admission offices of the University Hospital of Nancy in April 2011. The questions focused on trusted person and anticipated directives. RESULTS: We collected 367 answers, 61.8% of which were females. Average age of respondents was 48.7 years old (standard deviation: 15.6). Three fourths of respondents were informed of their possibility to appoint a trusted person and were able to establish the difference between a trusted person and a contact person. Respondents mainly chose their spouse (52%). They thought that the trusted person's opinion takes precedence over the family's or relatives' one (64.7%), given that this opinion is based on indications previously provided by the patient (74.8%). The majority of people surveyed were ignorant of the possibility to draft advance directives but were glad of it (57.5%). They would include herein their refusal of unreasonable obstinacy (75.8%), their wishes to withhold/withdraw of some treatments, to stop active treatments in case of high odds of chronic coma or vegetative state (52.8%) or their will to donate organ after death (50.6%). More than three fourths of the patients wished to include these informations on their health care card chip. CONCLUSION: Legal means of expression of the patient's wishes and are not systematically known by the population. The possibility to appoint a trusted person is much more known than that to draft advance directives. After the release in December 2012 of the Sicard report regarding the end of life in France, an important information campaign of the general public remains to be undertaken.

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OBJECTIVE: To examine the current status of advance directives (ADs) and do-not-resuscitate (DNR) orders among patients with terminal cancer in palliative care units (PCUs) in Japan. METHODS: We conducted a retrospective chart review of the last 3 consecutive patients who died in 203 PCUs before November 30, 2010. RESULTS: The percentages of patients who had ADs during the final hospitalization for cardiopulmonary resuscitation, mechanical ventilation, intravenous fluid administration, tube feeding, antibiotic administration, and who had appointed a health care proxy were 47%, 46%, 42%, 19%, 18%, and 48%, respectively. Seventy-six percent of the patients had a DNR order. Of the patients with decision-making capacity, 68% were involved in the DNR decision. CONCLUSIONS: These findings may reflect positive changes in patients' attitudes toward ADs, in Japan.

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INTRODUCTION: The prevalence of use of any advance directives was 26% in 112 patients hospitalized in a cardiac care unit (CCU)/intensive care unit (ICU) in an academic medical center. MATERIAL AND METHODS: We investigated in 2 community hospitals the prevalence of use of advance directives (AD), health care proxy (HCP), legal guardian (LG), and living will (LW) in 512 patients hospitalized in a CCU/ ICU approached for AD and HCP. RESULTS: The use of AD was 22%, of HCP was 19%, of LG was 16%, and of LW was 5%. CONCLUSIONS: The use of AD was 22%, of HCP was 19%, of LG was 16%, and of LW was 5% in patients hospitalized in a CCU/ICU. Educational programs on use of AD and of HCP need to be part of cardiovascular training programs and of cardiovascular continuing medical education.

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Covert treatment raises a number of ethical and practical issues in psychiatry. Viewpoints differ from the standpoint of psychiatrists, caregivers, ethicists, lawyers, neighbours, human rights activists and patients. There is little systematic research data on its use but it is quite certain that there is relatively widespread use. The veil of secrecy around the procedure is due to fear of professional censure. Whenever there is a veil of secrecy around anything, which is aided and abetted by vociferous opposition from some sections of society, the result is one of two: 1) either the activity goes underground or 2) it is reluctantly discarded, although most of those who used it earlier knew it was needed. Covert treatment has the dubious distinction of suffering both such secrecy and disapproval.Covert treatment has a number of advantages and disadvantages in psychotic disorders. The advantages are that it helps solve practical clinical problems; prevents delays in starting treatment, which is associated with clinical risks and substantial costs; prevents risk of self-destructive behaviour and/or physical assault by patient; prevents relapse; and prevents demoralization of staff. The disadvantages are that it maybe used with malafide intent by caregivers with or without the complicity of psychiatrists; it may be used to force conformity in dissenters; and the clinician may land himself in legal tangles even with its legitimate use. In addition, it may prevent insight, encourage denial, promote unhealthy practices in the treating staff and prevent understanding of why noncompliance occurs in the first place.Some support its use in dementia and learning disorders but oppose it in schizophrenia. The main reason is that uncooperative patients of schizophrenia (and related psychoses) are considered to be those who refuse treatment but retain capacity; while in dementia and severe learning disorder, uncooperative patients are those who lack capacity. This paper disputes this contention by arguing that although uncooperative patients of schizophrenia (and related psychoses) apparently retain capacity, it is limited, in fact distorted, since they lack insight. It presents the concept of insight-unconsciousness in a patient of psychosis. Just as an unconscious patient has to be given covert medical/surgical treatment, similarly an insight-unconscious patient with one of the different psychoses (in the acute phase or otherwise) may also have to be given covert treatment till he regains at least partial insight. It helps control psychotic symptoms and assists the patient in regaining enough insight to realize he needs treatment. Another argument against covert treatment is that people with schizophrenia have the capacity to learn and therefore can learn that they are required to take medications, but if medications are given covertly it may well fuel their paranoia. However, it should be noted that the patient who has lack of insight cannot learn unless he regains that insight, and he may need covert treatment to facilitate this process. Covert treatment can fuel the paranoia, true, but it can also control the psychotic symptoms sufficiently so that regular treatment can be initiated. In a patient who refuses to accept that he is sick and when involuntary commitment is not an option to be considered, covert treatment is the only option, apart from physical restraint. Ultimately, a choice has to be made between a larger beneficence (control of symptoms and start of therapy) and a smaller malevolence (necessary therapy, but without the patient's knowledge and consent).A number of practical clinical scenarios are outlined wherein the psychiatrist should adopt covert treatment in the best interests of the patient. Ethical issues of autonomy, power, secrecy and malafide intent arise; each of these can be countered only by non-malfeasance (above all, do no harm) under the overarch of beneficence (even above that, dare to care). An advance directive with health care proxy that sanctions covert treatment is presented. Questions raised by the practical clinical scenarios are then answered.THE CONCLUSIONS ARE AS FOLLOWS: covert treatment, i.e, temporary treatment without knowledge and consent, is seldom needed or justified. But, where needed, it remains an essential weapon in the psychiatrist's armamentarium: to be used cautiously but without guilt or fear of censure. However, the psychiatrist must use it very judiciously, in the rarest of rare cases, provided: i) he is firmly convinced that it is needed for the welfare of the patient; ii) it is the only option available to tide over a crisis; iii) continuing efforts are made to try and get the patient into regular psychiatric care; iv) the psychiatrist makes it clear that its use is only as a stop-gap; v) he is always alert to the chances of malevolence inherent in such a process and keeps away from conniving or associating with anything even remotely suspicious; and vi) he takes due precautions to ensure that he does not land into legal tangles later.The need of the hour is to explore in greater detail the need and justification for covert treatment, to lay out clear and firm parameters for its legitimate use, follow it up with standard literature and, finally, to establish clinical practice guidelines by unconflicted authors.The term "covert treatment" is preferable to "surreptitious prescribing"; they should not be used synonymously, the latter term being reserved for those cases where there is malafide intent.

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More than 2 years have passed since legislation was first proposed in New York to remedy the absence of legal authority for family members who must make important health care decisions for incapacitated loved ones who have left no advance directives. This legislation, the "Family Health Care Decisions Act," included standards for surrogate decision-making and safeguards for surrogate decisions about the use of life-sustaining treatments. This article argues in favor of the legislation and discusses the concerns presented in opposition.

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