In the last decade, scientific literature provided solid evidence of cognitive deficits in amyotrophic lateral sclerosis (ALS) patients and their effects on end-life choices. However, moral cognition and judgment are still poorly investigated in this population. Here we aimed at evaluating both socio-cognitive and socio-affective components of moral reasoning in a sample of 28 ALS patients. Patients underwent clinical and neuropsychological evaluation including basic cognitive and social cognition measures. Additionally, we administered an experimental task including moral dilemmas, with instrumental and incidental conditions. Patients' performances were compared with a control group [healthy control (HC)], including 36 age-, gender-, and education-matched healthy subjects. Despite that the judgment pattern was comparable in ALS and HC, patients resulted less prone to carry out a moral transgression compared to HC. Additionally, ALS patients displayed higher levels of moral permissibility and lower emotional arousal, with similar levels of engagement in both instrumental and incidental conditions. Our findings expanded the current literature about cognitive deficits in ALS, showing that in judging moral actions, patients may present non-utilitarian choices and emotion flattening. Such a decision-making profile may have relevant implications in applying moral principles in real-life situations and for the judgment of end-of-life treatments and care in clinical settings.
OBJECTIVES: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care.
METHODS: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care.
RESULTS: In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL.
CONCLUSION: Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia.
Background: In 2017, the American College of Surgeons' Trauma Quality Improvement Program adopted a Palliative Care Best Practices Guidelines that calls for early palliative care for hospitalized injured patients.
Objective: To develop an educational intervention to address the palliative needs of injured patients.
Design: Palliative faculty presented a three-part monthly lecture series focused on core primary palliative skills, including the components of palliative care; conducting family conferences; communication skills for complex medical decision making; pain management; and, end-of-life planning. Additionally a palliative provider joined trauma team rounds every other week to highlight opportunities for enhanced palliative assessments, identify appropriate consults, and provide just-in-time teaching.
Setting: Urban, level-1 trauma center.
Measurements: Surgical residents completed a survey at the beginning and end of the academic year, during which the intervention took place. All survey questions were answered with a 5-point Likert scale. Rate of palliative care consultation was also tracked.
Results: There were statistically significant perceived improvements in goals-of-care discussions (initial discussion—4.30 vs. 3.52, p = 0.4; follow-up discussion—3.89 vs. 3.05, p = 0.021) and documentation (3.89 vs. 2.9, p = 0.032), incorporation of patient preferences into decision making (4.20 vs. 3.43, p = 0.04), discussion of palliative needs during rounds (4.30 vs. 2.81; p < 0.001) and care transitions (3.90 vs. 3.05, p = 0.008), respect for decisions to forgo life-sustaining treatments (4.40 vs. 3.52, p = 0.004), and identification of advance directives (4.11 vs. 3.05, p = 0.002) and surrogate decision maker (4.44 vs. 3.60, p = 0.015). The overall rate of palliative specialist consultation also increased (8.4% vs. 16.1%, p < 0.001).
Conclusion: Embedding primary palliative education into usual didactic and rounding time for an inpatient trauma team is an effective way to help residents develop palliative skills and foster culture change. Educational partnerships such as this may serve as an example to other trauma programs.
Background: Advance care planning (ACP) can help to enhance the care of patients with limited life expectancy. Despite physicians’ key role in ACP, the ways in which physicians estimate and communicate prognosis can be improved.
Aim: To determine how physicians in different care settings self-assess their performance in estimating and communicating prognosis to patients in palliative care, and how they perceive their communication with other physicians about patients’ poor prognosis.
Design & setting: A survey study was performed among a random sample of GPs, hospital physicians (HPs), and nursing home physicians (NHPs) in the southwest of the Netherlands (n = 2212).
Method: A questionnaire was developed that had three versions for GPs, HPs, and NHPs. Each specialism filled in an appropriate version.
Results: A total of 547 physicians participated: 259 GPs, 205 HPs, and 83 NHPs. In the study, 61.1% of physicians indicated being able to adequately estimate whether a patient will die within 1 year, which was associated with use of the Surprise Question (odds ratio [OR] = 1.65, P = 0.042). In the case of a prognosis of <1 year, 75.0% of physicians indicated that they communicate with patients about preferences regarding treatment and care, which was associated with physicians being trained in palliative care (OR = 2.02, P=0.007). In cases where patients with poor prognosis are discharged after hospital admission, 83.4% of HPs indicated that they inform GPs about these patients’ preferences compared with 29.0% of GPs, and 21.7% of NHPs, who indicated that they are usually adequately informed about the preferences.
Conclusion: The majority of physicians indicated that they believe they can adequately estimate patients’ limited life expectancy and that they discuss patients’ preferences for care. However, more physicians should be trained in communicating about patients’ poor prognosis and care preferences.
Objectives: To describe individual views, wishes, and preferences for end of life care and to report UK anaesthetists' personal perspectives.
Methods: The ‘bigconversations’ questionnaire was developed by modifying an existing framework for end of life discussions. An online cross-sectional survey of UK anaesthetists was then conducted using the questionnaire in January 2019.
Results: The bigconversations questionnaire was validated as measuring the important aspects of end of life care by an expert panel and was found to have moderate test–retest reliability. Responses were received from 760/1913 (40%) of those invited to take part. Overall, 698/760 (92%) of respondents wished to be well informed about their condition and prognosis and 518/760 (68%) wanted to be heavily involved in decision-making about their health. Meanwhile, 639/760 (84%) of respondents would choose to forego treatment aimed at prolonging life should that life be of poor quality. The desire to spend time with family was a theme which arose from the qualitative analysis.
Conclusion: This study provides the first systematic description of UK doctors', specifically anaesthetists', personal preferences for end of life care. Broad trends were identified: to be well informed; to avoid high-intensity medical treatments if terminally unwell; to spend remaining time with family and friends; and to be symptom-free and well cared for. However, a substantial minority expressed different, indeed opposite, opinions. This variation highlights that good quality end of life care must be driven by discussion of an individual's values, wishes, and preferences.
BACKGROUND: Many patients receive unwanted, low-value, high-intensity care at the end of life because of poor communication with health care providers. Our aim was to evaluate the feasibility of using a physician assistant and an electronic tool to facilitate discussions about goals of care.
METHOD: We conducted a pilot study for the intervention (physician assistant-led discussion using an electronic tool) from Apr. 1 to Aug. 31, 2019. Patients aged 79 years or older admitted to the Royal Victoria Hospital (Barrie, Ontario) with either (i) no documented resuscitation preferences or (ii) a request for life-sustaining treatments in the event of a life-threatening illness were eligible for the intervention. The goal of this study was to complete more than 30 interventions. The primary outcomes included the proportion of consenting eligible patients, the time required and the proportion of patients changing their resuscitation preferences.
RESULTS: A total of 763 patients met the inclusion criteria, with 337 eligible for the intervention. Of these, 49 cases were contacted for consent, and 37 interventions were completed (75.5%, 95% confidence interval [CI] 61.1%-86.6%). On average, the intervention required 50 minutes (standard deviation 21) to complete. Overall, 31 interventions resulted in a change in resuscitation preferences (83.7%, 95% CI 68.0%-93.8%), with 22 patients choosing to forgo any access to life-sustaining treatments in the event of a life-threatening illness (59.4%, 95% CI 42.1%-75.2%).
INTERPRETATION: In this pilot study, the intervention was completed in a minority of eligible patients and required substantial time; however, it led to many changes in resuscitation preferences. Before designing a study to evaluate its impact, the intervention needs to be revised to make it more efficient to administer.
Life-sustaining treatments (LSTs) and end-of-life (EOL) care's goal for prolonging one's life are defined as aggressive EOL care among critically ill patients. They have limited effects and add unnecessary financial burden to advanced cancer patients. A questionnaire survey was conducted to collect information on demographics, disease conditions, preference for LSTs, and goal of EOL care among advanced cancer patients of comprehensive grade-A tertiary hospitals in Wuhan, mainland China. Most patients preferred to accept LSTs when they were in a critical condition, including cardiopulmonary resuscitation (89.9%), mechanical ventilation support (85.7%), nasogastric tube feeding (84.1%), blood transfusion (89.8%), general surgery (87.5%), and hemodialysis (85.8%). Most (88%) preferred prolonging life as the goal of EOL care. Logistic regression showed common influencing factors were participants who completed junior high/high school or below and were financially adequate had higher reference for aggressive EOL care. Patients whose physician had accurately disclosed prognosis; however, showed a decrease trend for aggressive EOL care. Most advanced cancer patients preferred to accept aggressive EOL care. Discussions about prognosis disclosure among physicians and patients should be improved. Education about LSTs' limitations and comfort-oriented care's benefits should be promoted among the advanced cancer patients in mainland China.
CONTEXT: As part of its Life Sustaining Treatment (LST) Decisions Initiative (LSTDI) the Veterans Health Administration (VA) in January 2017 began requiring electronic documentation of goals of care and preferences for Veterans with serious illness and at high risk for life-threatening events.
OBJECTIVES: To evaluate whether goals of "to be comfortable" were associated with greater palliative care (PC) use and lesser acute care use.
METHODS: We identified Veterans with VA inpatient or nursing home stays overlapping July 2018--January 2019, with LST templates documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). From template documentation, we identified a "to be comfortable" goal. Using VA and Medicare data we determined PC use (consultations and hospice) and hospital, intensive care unit (ICU) and emergency department (ED) use 7 and 30 days before death. Multivariate logistic regression examined the associations of interest.
RESULTS: Sixty-four percent of the 18,163 Veterans had comfort-care goals; 80% with comfort-care goals received hospice and 57% PC consultations (versus 57% and 46% [respectively] for decedents without comfort-care goals). In adjusted analyses, comfort care documented on the LST template prior to death was associated with significantly lower odds of hospital, ICU and ED use near the end of life. In the last 30 days of life Veterans with a comfort care goal had 44% lower odds (adjusted odds ratio 0.57; 95% CI: 0.51, 0.63) of being hospitalized.
CONCLUSION: Findings support the VA's commitment to honoring of Veterans' preferences post introduction of its LSTDI.
KEY MESSAGE: This study examines the association between comfort care goals and care near the end of life for Veteran decedents cared for after the Veterans Health Administration's Introduction of its Life-Sustaining Treatment Decisions Initiative. Findings show Veteran decedents with comfort care goals received care that appears concordant with their preferences.
Background: Patients and their family have resistance in withholding parenteral nutrition (PN) when patient become unable to intake food in the end-of-life. We aimed to investigate whether the preference for PN is changed after receiving an individual education about the risk and benefit of PN. Additionally, we focused on the preferences of patients and their family and why they prefer it about the nutritional support in the end of life.
Methods: This is prospective study. Patients are eligible if they cannot tolerate oral intake and enteral feeding and have Palliative Performance Scale (PPS) =50% due to progressive cancer. After informed consent, investigators educated patients and family for an hour using the handouts. Then, patients decided if they will receive PN. Quality of life (QOL) was checked by European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL) weekly during 3 weeks. Symptoms related to fluid overloading or dehydration was surveyed weekly also. A social anthropologist participated as an observer or interviewer during whole process of this study.
Results: After education, 12 patients (80%) chose to keep receiving PN and 3 patients (20%) changed their decision from PN to minimal hydration among the 15 patients. More calories were administered to patients who chosen PN (median 1,042.2 vs. 324.3 Kcal/day, P<0.001) for initial 7 days. Overall survival, scores of QLQ-C15-PAL, and symptoms were not different with or without PN. According to the anthropologist, medical staffs regard PN as complex medical treatments, while patients and family recognize it as meal rather than medicine.
Conclusions: Most patients and family prefer to receive PN despite its potential harm and marginal benefit. An in-depth discussion about prognosis and aim of care must be preceded before a decision whether to receive PN can be made.
Background: Portable Orders for Life-Sustaining Treatment (POLST) are increasingly utilized to assist patients approaching the end of life in documenting goals of care. We evaluated the association of POLST, resource utilization, and costs to 1 year among injured older adults requiring emergency services.
Methods: This was a retrospective cohort of injured older adults =65 years with continuous Medicare fee-for-service coverage transported by emergency medical services (EMS) in 2011 across 4 counties in Oregon. Data sources included EMS, Medicare claims, vital statistics, and state POLST, inpatient and trauma registries. Outcomes included hospital admission, receipt of aggressive medical interventions, costs, and hospice use. We matched patients on patient characteristics and comorbidities to control for bias.
Results: We included 2116 patients of which 484 (22.9%) had a POLST form prior to 911 contact. Of POLST patients, 136 (28.1%) had orders for full treatment, 194 (40.1%) for limited interventions, and 154 (31.8%) for comfort measures. There were no significant associations for care during the index event. However, in the year after the index event, patients with care limitations had higher adjusted hospice use (limited interventions OR 1.7 [95% CI: 1.2–2.6]; comfort OR, 2.0 [95% CI: 1.3–3.0]) and lower adjusted post-discharge costs (no POLST, $32,399 [95% CI: 30,041–34,756]; limited interventions, $18,729 [95% CI: 12,913–24,545]; and comfort $15,593 [95% CI: 12,091–19,095]). There were no significant associations for all other outcomes.
Conclusions: Care limitations specified in POLST forms among injured older adults transported by EMS are associated with increased use of hospice and decreased costs to 1 year.
In Japan, many adults prefer to die at home; however, few have their preferences actually come true. While discussions regarding place of death preferences (DPDPs) are important for older adults, they are poorly documented. Therefore, we investigated the factors associated with older Japanese men and women having DPDPs. We used cross-sectional survey data collected for the Japan Gerontological Evaluation Study (JAGES). We applied multivariable logistic regression analysis to calculate the odds ratio (ORs) of having DPDPs separately between men (n = 2,770) and women (n = 3,038) aged = 75 years. We considered 17 potential factors associated with having DPDPs, which were classified as either demographic, healthcare, family, or community factors. Among participants, 50.1% had DPDPs: 1,288 men (44.3%) and 1,619 women (55.7%). Older adults, DPDPs were associated with 5 additional factors; e.g. having a primary care physician (ORs = 1.47 [men] and 1.45 [women]), as were those who gave family and friends advice (ORs = 1.26 [men] and 1.62 [women]), and having people who listened to their concerns (ORs = 1.70 [men] and 1.81 [women]). Among men, DPDPs were associated with 3 additional factors; e.g. humorous conversations with their spouse (OR = 1.60). Among women, only one factor—reading newspapers (OR = 1.43) was associated with having DPDPs. Social networks with primary care physicians, family members, and friends may be important factors in promoting DPDPs. These gender-based differences in older adults relating to DPDPs should be considered when developing interventions to promote advance care planning that includes DPDPs.
There is limited evidence on the relationships of preference for end-of-life life-sustaining treatments [LSTs] and diagnostic contexts like heart failure [HF] or cancer, and patient attitudes toward and perceived susceptibility to use advance directives [ADs]. Thus, this study aimed to compare attitudes and perceived susceptibility between HF patients and community-dwelling patients with cancer, and examine the associations of these variables with their preference for each LST (cardiopulmonary resuscitation [CPR], ventilation support, hemodialysis, and hospice care). Secondary data were obtained from 36 outpatients with HF (mean age, 65.44 years; male, 69.4%) and 107 cancer patients (mean age, 67.39 years; male, 32.7%). More patients with HF preferred CPR than cancer patients (41.7% and 15.9%, 2 = 8.88, P = 0.003). Attitudes and perceived susceptibility were similar between the two diagnostic cohorts. HF patients and those with more positive attitudes had greater odds of preferring CPR (odds ratio [OR] = 3.02, confidence interval [CI] = 1.19, 7.70) and hospice care (OR = 1.14, CI = 1.06, 1.23), respectively. HF diagnosis and AD attitudes increased the preference for CPR and hospice care, respectively. This suggests that it is important to gain positive attitudes toward ADs and consider diagnostic context to facilitate informed decision-making for LSTs.
Health Science students in Spain and Bolivia should be trained in the management of the processes of death and dying of patients. The aim of this study was to examine the degree of training, self-perceived safety and preferences in relation to the care of terminal and non-terminal patients. It was a descriptive, cross-sectional, multicenter study with students of Medicine, Nursing and Physiotherapy in Spain and Bolivia. The following variables were evaluated: care preparation and emotional preparation to caring for terminally ill and non-terminally ill patients, the Death Attitude Profile Revised (PAM-R) and the Bugen Scale for Facing Death. The self-perceived preparation of students for caring for terminally ill patients can be considered "fair" (mean 2.15, SD 0.756), and this was also the case for their perceived emotional preparation (mean 2.19, SD 0.827). In contrast, the score obtained for their preparedness for treating non-terminal patients was higher (mean 2.99 and 3.16, respectively). Working with terminally ill patients, including terminal or geriatric cancer patients, was the least preferred option among future health professionals. The results obtained show a limited preference for end-of-life care and treatment, highlighting a lack of preparation and motivation among health science students in Spain and Bolivia for working with these patients.
BACKGROUND: It is not clear how lay people prioritize the various, sometimes conflicting, interests when they make surrogate medical decisions, especially in non-Western cultures. The extent such decisions are perspective-related is also not well documented.
METHODS: We explored the relative importance of 28 surrogate decision-making factors to 120 Middle-Eastern (ME) and 120 East-Asian (EA) women from three perspectives, norm-perception (N), preference as patient (P), and preference as surrogate decision-maker (S). Each respondent force-ranked (one to nine) 28 opinion-items according to each perspective. Items' ranks were analyzed by averaging-analysis and Q-methodology.
RESULTS: Respondents' mean (SD) age was 33.2 (7.9) years; all ME were Muslims, 83% of EA were Christians. "Trying everything possible to save patient," "Improving patient health," "Patient pain and suffering," and/or "What is in the best interests of patient" were the three most-important items, whereas "Effect of caring for patient on all patients in society," "Effect of caring for patient on patients with same disease," and/or "Cost to society from caring for patient" were among the three least-important items, in each ME and EA perspectives. P-perspective assigned higher mean ranks to family and surrogate's needs and burdens-related items, and lower mean rank to "Fear of loss" than S-perspective (p<0.001). ME assigned higher mean ranks to "Medical facts" and "Surrogate own wishes for patient" and lower mean rank to "Family needs" in all perspectives (p<0.001). Q-methodology identified models that were relatively patient's preference-, patient's religious/spiritual beliefs-, or emotion-dependent (all perspectives); medical facts-dependent (N- and S-perspectives), financial needs-dependent (P- and S-perspectives), and family needs-dependent (P-perspective).
CONCLUSIONS: 1) Patient's health was more important than patient's preference to ME and EA women; society interest was least important. 2) Family and surrogate's needs/ burdens were more important, whereas fear of loss was less important to respondents as patients than as surrogate decision-makers. 3) Family needs were more important to EA than ME respondents, the opposite was true for medical facts and surrogate's wishes for patient. 4) Q-methodology models that relatively emphasized various surrogate decision-making factors overlapped the ME and EA women' three perspectives.
Purpose: Social support is an important factor in reducing caregiver burden, however, accessing social support via traditional means is often challenging for family caregivers of hospice patients. Online support groups may offer an effective solution. The present study sought to understand dynamics of online social support among family and other informal (e.g., friends) caregivers of hospice cancer patients in an online social support group. The primary aim of the study was to identify types of online social support and support-seeking behaviors, with a secondary aim to understand informal hospice caregivers’ preferences for social support.
Method: Data used in this study were collected as part of a federally funded randomized clinical trial of an informal hospice cancer caregiver support intervention. Findings are based on directed and conventional content analysis of support group members' posts and comments—including text and images—and a sample of caregivers’ exit interviews.
Results: Analyses demonstrated that the majority of online support provided by group members was emotional support, followed by companionship support, appraisal support, and informational support. Instrumental support was rarely provided. Support was primarily elicited in an indirect manner through self-disclosure and patient updates, with few overt requests for support.
Conclusions: Findings suggest online social support groups can be a valuable resource for informal caregivers who are in need of emotional support and lack the ability to access face-to-face support groups. Clinical implications of this research to healthcare systems regarding the importance of incorporating nurses and other medical professionals as co-facilitators of online support groups are discussed.
BACKGROUND: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care.
AIM: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians.
DESIGN: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout.
SETTING/PARTICIPANTS: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited.
RESULTS: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences.
CONCLUSION: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time.
The current study explores the end-of-life (EOL) preferences of a national representative sample of adults aged 55 and older in Switzerland and shows how these preferences vary by respondents' sociodemographic characteristics and the linguistic region in which they live. Many of the presented EOL attributes are considered as (very) important by a large majority of the older population in Switzerland with significant variations across sociodemographic groups. Specifically, gender is related to psychosocial aspects of EOL, age to the importance attached to avoiding being a burden on the society, and education levels to preferences regarding overtreatment and advance care planning. The results highlight the importance of a personalized, holistic and interdisciplinary approach to EOL and EOL care, since social, psychological, organizational and physical aspects of EOL are rated as (very) important with significant differences in EOL preferences across sociodemographic groups.
BACKGROUND: Cystic fibrosis (CF) is a life-limiting disease that results in premature death mainly due to respiratory failure. Literature suggests that for many people with CF end-of-life wishes are discussed too late or not at all, with most dying in hospital. The aim of this project was to improve end-of-life care for adults with CF.
DESIGN: Three improvement cycles were carried out over a 2-year period in one of the largest adult CF centres in Europe. The first cycle involved implementing regular multidisciplinary team (MDT) debriefs after a patient death with increased education. The second cycle involved codesigning a CF-specific advance care plan (ACP) with patients, families, bereaved relatives and experts across the UK, then implementing this into our service. The final cycle was designing a CF-specific end of life, online course for clinicians. Success was measured by: use of ACP and whether patients had died in their preferred location, patient feedback via a survey and satisfaction with the online course using a postcourse report.
RESULTS: The number of patients given the opportunity to discuss their end of life wishes increased from 10% to 85%. The number of patients who died in their preferred location increased from 7% to 85% over the 2-year project time. Patient feedback has been overwhelmingly positive. The key barrier has been changing MDT culture, overcoming this required the engagement of the whole team. The online course has been successful with 258 participants to date from 26 countries.
CONCLUSION: Education, staff support and a CF-specific ACP document empowered healthcare professionals to initiate difficult conversations to improve end-of-life care.
Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient's preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients.