Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices.

PURPOSE: CancerLinQ seeks to use data sharing technology to improve quality of care, improve health outcomes, and advance evidence-based research. Understanding the experiences and concerns of patients is vital to ensure its trustworthiness and success. METHODS: In a survey of 1,200 patients receiving care in four CancerLinQ-participating practices, we evaluated awareness and attitudes regarding participation in data sharing. RESULTS: Of 684 surveys received (response rate 57%), 678 confirmed cancer diagnosis and constituted the analytic sample; 54% were female, and 70% were 60 years and older; 84% were White. Half (52%) were aware of the existence of nationwide databases focused on patients with cancer before the survey. A minority (27%) indicated that their doctors or staff had informed them about such databases, 61% of whom indicated that doctors or staff had explained how to opt out of data sharing. Members of racial/ethnic minority groups were less likely to be comfortable with research (88% v 95%; P = .002) or quality improvement uses (91% v 95%; P = .03) of shared data. Most respondents desired to know how their health information was used (70%), especially those of minority race/ethnicity (78% v 67% of non-Hispanic White respondents; P = .01). Under half (45%) felt that electronic health information was sufficiently protected by current law, and most (74%) favored an official body for data governance and oversight with representation of patients (72%) and physicians (94%). Minority race/ethnicity was associated with increased concern about data sharing (odds ratio [OR], 2.92; P < .001). Women were less concerned about data sharing than men (OR, 0.61; P = .001), and higher trust in oncologist was negatively associated with concern (OR, 0.75; P = .03). CONCLUSION: Engaging patients and respecting their perspectives is essential as systems like CancerLinQ evolve.

Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.

BACKGROUND: Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap. OBJECTIVE: We aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences. METHODS: We conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey. RESULTS: After deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences. CONCLUSIONS: Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

BACKGROUND: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. OBJECTIVE: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. METHODS: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. RESULTS: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group's decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. CONCLUSIONS: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.

Patient Experiences, Trust, and Preferences for Health Data Sharing.

PURPOSE: Scholars have examined patients' attitudes toward secondary use of routinely collected clinical data for research and quality improvement. Evidence suggests that trust in health care organizations and physicians is critical. Less is known about experiences that shape trust and how they influence data sharing preferences. MATERIALS AND METHODS: To explore learning health care system (LHS) ethics, democratic deliberations were hosted from June 2017 to May 2018. A total of 217 patients with cancer participated in facilitated group discussion. Transcripts were coded independently. Finalized codes were organized into themes using interpretive description and thematic analysis. Two previous analyses reported on patient preferences for consent and data use; this final analysis focuses on the influence of personal lived experiences of the health care system, including interactions with providers and insurers, on trust and preferences for data sharing. RESULTS: Qualitative analysis identified four domains of patients' lived experiences raised in the context of the policy discussions: (1) the quality of care received, (2) the impact of health care costs, (3) the transparency and communication displayed by a provider or an insurer to the patient, and (4) the extent to which care coordination was hindered or facilitated by the interchange between a provider and an insurer. Patients discussed their trust in health care decision makers and their opinions about LHS data sharing. CONCLUSION: Additional resources, infrastructure, regulations, and practice innovations are needed to improve patients' experiences with and trust in the health care system. Those who seek to build LHSs may also need to consider improvement in other aspects of care delivery.

"I'm Being Forced to Make Decisions I Have Never Had to Make Before": Oncologists' Experiences of Caring for Seriously Ill Persons With Poor Prognoses and the Dilemmas Created by COVID-19.

PURPOSE: The COVID-19 pandemic has created a new set of problems for clinicians. This study examines the experiences of oncologists providing care to seriously ill persons near the end of life in the context of the COVID-19 pandemic. METHODS: Between January 2020 and August 2020, we conducted semistructured, in-depth individual interviews with 22 purposefully sampled oncologists from practices enrolled in the Michigan Oncology Quality Consortium. Deidentified transcripts of the interviews were examined using thematic analysis. RESULTS: Our respondents described several novel problems created by the COVID-19 pandemic, including: (1) ethical challenges, (2) the need to manage uncertainty-physically and emotionally-on the part of both patients and oncologists, and (3) the difficulty of integrating technology and communication for seriously ill persons. These problems were made more complex by features of the pandemic: resource scarcity (and the need to fairly allocate poor resources), delays in care, high levels of fear, and the increased importance of advance care planning. Nonabandonment served as a way to cope with increased stress, and the use of telemedicine became an increasingly important medium of communication. CONCLUSION: This study offers an in-depth exploration of the problems faced by oncologists as a result of the COVID-19 pandemic and how they navigated them. Optimal decision making for seriously ill persons with cancer during the COVID-19 pandemic must include open acknowledgment of the ethical challenges involved, the emotions experienced by both patients and their oncologists, and the urgent need to integrate technology with compassionate communication in determining patient preferences.

Governance of a Learning Health Care System for Oncology: Patient Recommendations.

PURPOSE: The learning health care system (LHS) was designed to enable real-time learning and research by harnessing data generated during patients' clinical encounters. This novel approach begets ethical questions regarding the oversight of users and uses of patient data. Understanding patients' perspectives is vitally important. MATERIALS AND METHODS: We conducted democratic deliberation sessions focused on CancerLinQ, a real-world LHS. Experts presented educational content, and then small group discussions were held to elicit viewpoints. The deliberations centered around whether policies should permit or deny certain users and uses of secondary data. De-identified transcripts of the discussions were examined by using thematic analysis. RESULTS: Analysis identified two thematic clusters: expectations and concerns, which seemed to inform LHS governance recommendations. Participants expected to benefit from the LHS through the advancement of medical knowledge, which they hoped would improve treatments and the quality of their care. They were concerned that profit-driven users might manipulate the data in ways that could burden or exploit patients, hinder medical decisions, or compromise patient-provider communication. It was recommended that restricted access, user fees, and penalties should be imposed to prevent users, especially for-profit entities, from misusing data. Another suggestion was that patients should be notified of potential ethical issues and included on diverse, unbiased governing boards. CONCLUSION: If patients are to trust and support LHS endeavors, their concerns about for-profit users must be addressed. The ethical implementation of such systems should consist of patient representation on governing boards, transparency, and strict oversight of for-profit users.

Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology.

PURPOSE: The expansion of learning health care systems (LHSs) promises to bolster research and quality improvement endeavors. Stewards of patient data have a duty to respect the preferences of the patients from whom, and for whom, these data are being collected and consolidated. METHODS: We conducted democratic deliberations with a diverse sample of 217 patients treated at 4 sites to assess views about LHSs, using the example of CancerLinQ, a real-world LHS, to stimulate discussion. In small group discussions, participants deliberated about different policies for how to provide information and to seek consent regarding the inclusion of patient data. These discussions were recorded, transcribed, and de-identified for thematic analysis. RESULTS: Of participants, 67% were female, 61% were non-Hispanic Whites, and the mean age was 60 years. Patients' opinions about sharing their data illuminated 2 spectra: trust/distrust and individualism/collectivism. Positions on these spectra influenced the weight placed on 3 priorities: promoting societal altruism, ensuring respect for persons, and protecting themselves. In turn, consideration of these priorities seemed to inform preferences regarding patient choices and system transparency. Most advocated for a policy whereby patients would receive notification and have the opportunity to opt out of including their medical records in the LHS. Participants reasoned that such a policy would balance personal protections and societal welfare. CONCLUSION: System transparency and patient choice are vital if patients are to feel respected and to trust LHS endeavors. Those responsible for LHS implementation should ensure that all patients receive an explanation of their options, together with standardized, understandable, comprehensive materials.

Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.

PURPOSE: We sought to generate informed and considered opinions regarding acceptable secondary uses of deidentified health information and consent models for oncology learning health care systems. METHODS: Day-long democratic deliberation sessions included 217 patients with cancer at four geographically and sociodemographically diverse sites. Patients completed three surveys (at baseline, immediately after deliberation, and 1-month follow-up). RESULTS: Participants were 67.3% female, 21.7% black, and 6.0% Hispanic. The most notable changes in perceptions after deliberation related to use of deidentified medical-record data by insurance companies. After discussion, 72.3% of participants felt comfortable if the purpose was to make sure patients receive recommended care (v 79.5% at baseline; P = .03); 24.9% felt comfortable if the purpose was to determine eligibility for coverage or reimbursement (v 50.9% at baseline; P < .001). The most notable change about secondary research use related to believing it was important that doctors ask patients at least once whether researchers can use deidentified medical-records data for future research. The proportion endorsing high importance decreased from baseline (82.2%) to 68.7% immediately after discussion (P < .001), and remained decreased at 73.1% (P = .01) at follow-up. At follow-up, non-Hispanic whites were more likely to consider it highly important to be able to conduct medical research with deidentified electronic health records (96.8% v 87.7%; P = .01) and less likely to consider it highly important for doctors to get a patient's permission each time deidentified medical record information is used for research (23.2% v 51.6%; P < .001). CONCLUSION: This research confirms that most patients wish to be asked before deidentified medical records are used for research. Policies designed to realize the potential benefits of learning health care systems can, and should be, grounded in informed and considered public opinion.

Interpretations of the Term "Actionable" when Discussing Genetic Test Results: What you Mean Is Not What I Heard.

In genomic medicine, the familiarity and inexactness of the term "actionable" can lead to multiple interpretations and mistaken beliefs about realistic treatment options. As part of a larger study focusing on public attitudes toward policies for the return of secondary genomic results, we looked at how members of the lay public interpret the term "medically actionable" in the context of genetic testing. We also surveyed a convenience sample of oncologists as part of a separate study and asked them to define the term "medically actionable." After being provided with a definition of the term, 21 out of 60 (35%) layperson respondents wrote an additional action not specified in the provided definition (12 mentioned "cure" and 9 mentioned environment or behavioral change) and 17 (28%) indicated "something can be done" with no action specified. In contrast, 52 surveyed oncologists did not mention environment, behavioral change, or cure. Based on our findings, we propose that rather than using the term "actionable" alone, providers should also say "what they mean" to reduce miscommunication and confusion that could negatively impact medical decision-making. Lastly, to guide clinicians during patient- provider discussion about genetic test results, we provide examples of phrasing to facilitate clearer communication and understanding of the term "actionable."

Physician Experiences and Understanding of Genomic Sequencing in Oncology.

The amount of information produced by genomic sequencing is vast, technically complicated, and can be difficult to interpret. Appropriately tailoring genomic information for non-geneticists is an essential next step in the clinical use of genomic sequencing. To initiate development of a framework for genomic results communication, we conducted eighteen qualitative interviews with oncologists who had referred adult cancer patients to a matched tumor-normal tissue genomic sequencing study. In our qualitative analysis, we found varied levels of clinician knowledge relating to sequencing technology, the scope of the tumor genomic sequencing study, and incidental germline findings. Clinicians expressed a perceived need for more genetics education. Additionally, they had a variety of suggestions for improving results reports and possible resources to aid in results interpretation. Most clinicians felt genetic counselors were needed when incidental germline findings were identified. Our research suggests that more consistent genetics education is imperative in ensuring the proper utilization of genomic sequencing in cancer care. Clinician suggestions for results interpretation resources and results report modifications could be used to improve communication. Clinicians' perceived need to involve genetic counselors when incidental germline findings were found suggests genetic specialists could play a critical role in ensuring patients receive appropriate follow-up.

Perspectives of Patients With Cancer on the Ethics of Rapid-Learning Health Systems.

Purpose To inform the evolving implementation of CancerLinQ and other rapid-learning systems for oncology care, we sought to evaluate perspectives of patients with cancer regarding ethical issues. Methods Using the GfK Group online research panel, representative of the US population, we surveyed 875 patients with cancer; 621 (71%) responded. We evaluated perceptions of appropriateness (scored from 1 to 10; 10, very appropriate) using scenarios and compared responses by age, race, and education. We constructed a scaled measure of comfort with secondary use of deidentified medical information and evaluated its correlates in a multivariable model. Results Of the sample, 9% were black and 9% Hispanic; 38% had completed high school or less, and 59% were age ≥ 65 years. Perceptions of appropriateness were highest when consent was obtained and university researchers used data to publish a research study (weighted mean appropriateness, 8.47) and lowest when consent was not obtained and a pharmaceutical company used data for marketing (weighted mean appropriateness, 2.7). Most respondents (72%) thought secondary use of data for research was very important, although those with lower education were less likely to endorse this (62% v 78%; P < .001). Overall, 35% believed it was necessary to obtain consent each time such research was to be performed; this proportion was higher among blacks/Hispanics than others (48% v 33%; P = .02). Comfort with the use of deidentified information from medical records varied by scenario and overall was associated with distrust in the health care system. Conclusion Perceptions of patients with cancer regarding secondary data use depend on the user and the specific use of the data, while also frequently differing by patient sociodemographic factors. Such information is critical to inform ongoing efforts to implement oncology learning systems.

Paradox of Prescribing Late Chemotherapy: Oncologists Explain.

PURPOSE: The value of chemotherapy for patients with cancer in the last weeks of life warrants examination. Late chemotherapy may not improve survival or quality of life but typically precludes hospice enrollment and may result in additional symptoms, increased use of other aggressive treatments, and worsening quality of life. Few studies have explored oncologists' rationales for administering chemotherapy near death. This study examines the self-reported factors that influence oncologists' decisions about late chemotherapy. METHODS: In-depth individual interviews were conducted with 17 oncologists through a semistructured interview guide. Interviews were audio recorded and transcribed verbatim. Transcripts were coded and analyzed using conventional content analysis, a qualitative method that allows the detection and analysis of patterns in the data. RESULTS: Clinical factors take priority in determining late chemotherapy decisions when clear treatment choices exist. When clinical factors are ambiguous, emotion becomes a highly salient influence. Oncologists view late chemotherapy to be patient driven and use it to palliate emotional distress and maintain patient hope even when physical benefit is unexpected. Oncologists experience unique and difficult challenges when caring for dying patients, including emotionally draining communication, overwhelming responsibility for life/death, limitations of oncology to heal, and prognostic uncertainty. These challenges are also eased by offering late chemotherapy. CONCLUSION: The findings reveal a nuanced understanding of why oncologists find it difficult to refuse chemotherapy treatment for patients near death. Optimal end-of-life treatment decisions require supportive interventions and system change, both of which must take into account the challenges oncologists face.

Weight gain in healthy pregnant women in relation to pre-pregnancy BMI, diet and physical activity.

OBJECTIVE: to explore gestational weight gain in healthy women in relation to pre-pregnancy Body Mass Index, diet and physical activity. DESIGN: a cross-sectional survey was conducted among 455 healthy pregnant women of all gestational ages receiving antenatal care from an independent midwife in the Netherlands. Weight gain was assessed using the Institute of Medicine (IOM) guidelines and classified as below, within, or above the guidelines. A multinomial regression analysis was performed with weight gain classifications as the dependent variable (within IOM-guidelines as reference). Independent variables were pre-pregnancy Body Mass Index, diet (broken down into consumption of vegetables, fruit and fish) and physical activity (motivation to engage in physical activity, pre-pregnancy physical activity and decline in physical activity during pregnancy). Covariates were age, gestational age, parity, ethnicity, family income, education, perceived sleep deprivation, satisfaction with pre-pregnancy weight, estimated prepregnancy body mass index, smoking, having a weight gain goal and having received weight gain advice from the midwife. FINDINGS: forty-two per cent of the women surveyed gained weight within the guidelines. Fourteen per cent of the women gained weight below the guidelines and 44 per cent gained weight above the guidelines. Weight gain within the guidelines, compared to both above and below the guidelines, was not associated with pre-pregnancy Body Mass Index nor with diet. A decline in physical activity was associated with weight gain above the guidelines (OR 0.54, 95 per cent CI 0.33-0.89). Weight gain below the guidelines was seen more often in women who perceived a greater sleep deprivation (OR 1.20, 95 per cent CI 1.02-1.41). Weight gain above the guidelines was seen less often in Caucasian women in comparison to non-Caucasian women (OR 0.22, 95 per cent CI 0.08-0.56) and with women who did not stop smoking during pregnancy (OR 0.49, 95 per cent CI 0.25-0.95). KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: a decline in physical activity was the only modifiable factor in our population associated with weight gain above the gain recommended by the guidelines. Prevention of reduced physical activity during pregnancy seems a promising approach to promoting healthy weight gain. Interventions to promote healthy weight gain should focus on all women, regardless of pre-pregnancy body mass index.

Are therapeutic motivation and having one's own doctor as researcher sources of therapeutic misconception?

BACKGROUND: Desire for improvement in one's illness and having one's own doctor functioning as a researcher are thought to promote therapeutic misconception (TM), a phenomenon in which research subjects are said to conflate research with treatment. PURPOSE: To examine whether subjects' therapeutic motivation and own doctor functioning as researcher are associated with TM. METHODS: We interviewed 90 persons with advanced Parkinson's disease (PD) enrolled or intending to enrol in sham surgery controlled neurosurgical trials, using qualitative interviews. Subjects were compared by motivation (primarily therapeutic vs primarily altruistic or dually motivated by altruistic and therapeutic motivation), and by doctor status (own doctor as site investigator vs not) on the following: understanding of purpose of study; understanding of research procedures; perception of chance of direct benefit; and recollection and perceptions concerning the risks. RESULTS: 60% had primarily therapeutic motivation and 44% had their own doctor as the site investigator, but neither were generally associated with increased TM responses. Overall level of understanding of purpose and procedures of research were high. Subjects responded with generally high estimates of probability of direct benefit, but their rationales were personal and complex. The therapeutic-motivation group was more sensitive to risks. Five (5.6%) subjects provided incorrect answers to the question about purpose of research, and yet, showed excellent understanding of research procedures. CONCLUSIONS: In persons with PD involved in sham surgery clinical trials, being primarily motivated by desire for direct benefit to one's illness or having one's own doctor as the site investigator were not associated with greater TM responses.

Sham surgery controls in Parkinson's disease clinical trials: views of participants.

BACKGROUND: Sham surgery controls are increasingly used in neurosurgical clinical trials in Parkinson's disease (PD) but remain controversial. We interviewed participants of such trials, specifically examining their understanding and attitudes regarding sham surgery. METHODS: We conducted semistructured qualitative interviews with participants of 3 sham surgery-controlled trials for PD, focusing on their understanding of sham design, their reactions to it, its impact on decision making, and their understanding of posttrial availability of the experimental intervention and its impact on decisions to participate. RESULTS: All subjects (n = 90) understood the 2-arm design; most (86%) described the procedural differences between the arms accurately. Ninety-two percent referred to scientific or regulatory reasons as rationales for the sham control, with 62% specifically referring to the placebo effect. Ninety-one percent said posttrial availability of the experimental intervention had a strong (48%) or some (43%) influence on their decision to participate, but only 68% understood the conditions for posttrial availability. CONCLUSIONS: Most subjects in sham surgery-controlled PD trials comprehend the sham surgery design and its rationale. Although there is room for improvement, most subjects of sham surgery trials appear to be adequately informed.

Comparison of enrollees and decliners of Parkinson disease sham surgery trials.

Concerns have been raised that persons with serious illnesses participating in high-risk research, such as PD patients in sham surgery trials, have unrealistic expectations and are vulnerable to exploitation. A comparison of enrollees and decliners of such research may provide insights about the adequacy of decision making by potential subjects. We compared 61 enrollees and 10 decliners of two phase II neurosurgical intervention (i.e., cellular and gene transfer) trials for PD regarding their demographic and clinical status, perceptions and attitudes regarding research risks, potential direct benefit, and societal benefit, and perspectives on the various potential reasons for and against participation. In addition to bivariate analyses, a logistic regression model examined variables regarding risks and benefits as predictors of participation status. Enrollees perceived lower risk of harm while tolerating higher risk of harm and were more action oriented, but did not have more advanced disease. Both groups rated hope for benefit as a strong reason to participate, whereas the fact that the study's purpose was not solely to benefit them was rated as "not a reason" against participation. Hope for benefit and altruism were rated higher than expectation of benefit as reasons in favor of participation for both groups. Enrollees and decliners are different in their views and attitudes toward risk. Although both are attracted to research because of hopes of personal benefit, this hope is clearly distinguishable from an expectation of benefit and does not imply a failure to understand the main purpose of research.

A cross cultural review of the ethical issues in dementia care in Kerala, India and The Netherlands.

BACKGROUND: The paper explores the diverse ethical issues in the care of persons with dementia, in the Netherlands and Kerala, India. These cross-cultural data are used to suggest newer ways for addressing the ethical issues in a mutually enhancing manner. METHODS: A thorough review of the literature focusing on ethical aspects of the care for persons with dementia. RESULTS: The medical paradigm is dominant in the Netherlands and awareness of dementia as an organic brain disease is low in Kerala. Institutionalized care is more common in the Netherlands and home-based care is the norm in Kerala. Institutional care is costly, whereas home-based care is stressful for caregivers. The advanced directive plays an influential role in the Netherlands, but this mechanism is yet to evolve in Kerala. The legal and social setting of the Netherlands has a strong influence on physician decision-making concerning end of life issues. In Kerala, discussion of these matters is nearly unknown. CONCLUSION: Limited awareness of dementia in Kerala should be addressed in public forums, which can then be used to garner governmental support. The predominantly institutional model of care-giving in the Netherlands and home-based care-giving in Kerala, each have their strengths; policy makers in both societies can usefully apply the values and merits inherent in both models. A culturally appropriate implementation of the advanced directive will have beneficial medical, social, and economic impacts in Kerala. The remarkable disparity between the Netherlands and Kerala in dealing with end-of-life issues will allow more philosophically and socially informed ways of addressing the ethical questions that arise in those situations.