Bioethics for clinicians: 2. Disclosure.

In the context of patient consent, "disclosure" refers to the provision of relevant information by the clinician and its comprehension by the patient. Both elements are necessary for valid consent. Disclosure should inform the patient adequately about the treatment and its expected effects, relevant alternative options and their benefits and risks, and the consequences of declining or delaying treatment. The clinician''s goal is to disclose information that a reasonable person in the patient''s position would need in order to make an informed decision. Therefore, clinicians may need to consider how the proposed treatment (and other options) might affect the patient''s employment, finances, family life and other personal concerns. Clinicians may also need to be sensitive to cultural and religious beliefs that can affect disclosure.     

Freedom of Choice About Incidental Findings Can Frustrate Participants' True Preferences

Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic. In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over‐ and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice. Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade‐offs that are connected with the uncertain predictive value of genetic risk information.     

Advance directives: the views of health care professionals.

OBJECTIVES: This study examined the views and experiences of 20 physicians and 20 nurses at a major Canadian teaching hospital regarding the use of advance directives in clinical care. DESIGN: The participants were purposively drawn from four clinical specialties: family and community medicine, oncology, intensive care and geriatrics. Detailed interviews were conducted in person. Content analysis was used to code the data, which were further analysed with both quantitative and qualitative techniques. MAIN RESULTS: Thirty-nine of the 40 participants favoured the use of advance directives in clinical care; physicians had somewhat less positive attitudes than nurses toward such directives. Advance directives were thought by participants to be helpful in resolving disagreements between patients and their families about treatment options; in making patients more comfortable, both physically and psychologically, during the process of dying; and in opening up communication and trust among patients, their families and health care professionals. Concerns about the use of advance directives focused on the lack of clarity in some patients'' instructions, the absence of legal status for directives, the possible interference with a practitioner''s clinical judgement, the adequacy and appropriateness of patients'' information about their circumstances, and the type of intervention (passive or active) requested by patients. CONCLUSIONS: New regulations and legislation are making the use of advance directives more widespread. Health care professionals should participate in the development and implementation of these directives. Continuing professional education is essential in this regard.     

Randomised comparison of procedures for obtaining informed consent in clinical trials of treatment for cancer.

Methods of obtaining informed consent have evolved differently in Western countries without substantive information on the impact of these different practices on the patients. A randomised study was performed to compare two commonly adopted methods of seeking consent to randomised treatment: an individual approach at the discretion of each doctor and a uniform policy of total disclosure of all relevant information. The impact of both consent procedures on the patient''s understanding and anxiety levels and on the doctor-patient relationship was assessed by means of a questionnaire given soon after the consent interview. Fifty seven patients were assigned at random to two groups: to 29 patients an individual approach to seeking consent was adopted and to 28 patients all relevant information was given. Seven patients refused consent to randomised treatment, with slightly more refusals by patients in the total disclosure group (5 v 2, p = 0.25). The main effects of total disclosure of all information compared with an individual approach to seeking consent were: a better understanding of treatment and side effects and of research aspects of the treatments; less willingness to agree to randomised treatment; and increased anxiety. No significant differences were found in patients'' perceptions of the doctor-patient relationship. A repeat questionnaire given three to four weeks later no longer showed significant differences between the two groups.     

Research, Informed Consent, and the Limits of Disclosure

According to this paper, respect for informed consent implies that subjects should often be told a good deal more than ethical guidelines explicitly or implicitly require. Unless subjects are informed of the researchers' personal characteristics, views, and sponsors whenever they would be likely to consider them significant, their autonomy is being overridden. However, overriding subjects' autonomy is sometimes required by the interests of researchers in not being discriminated against or suffering intrusions into their privacy. This paper resolves the conflict between informed consent and the interests of researchers by recommending that (i) subjects generally should be told of the personal characteristics of researchers when relevant as part of the researchers' job and (ii) that subjects should be told of researchers' views when conceptually connected to the research and (iii) that subjects should almost always be told about sponsorship. While the paper explicitly limits the role of informed consent, these recommendations go significantly beyond most guidelines in their requirements about what information should be disclosed.     

Parents' difficulties and information needs in coping with acute illness in preschool children: a qualitative study.

OBJECTIVES: To identify and explore difficulties parents experience with acute illness in young children and the information they seek to help them. DESIGN: Qualitative study using semi-structured one t one and group interviews with parents of preschool children. SETTING: Disadvantaged inner city community. SUBJECTS: 95 parents of preschool children. RESULTS: Parents felt disempowered when dealing with acute illness in their children because of difficulties making sense of the illness. Central to parents'' difficulties were their experiences of inadequate information sharing by their general practitioners and variations in their doctors'' decisions and behaviour. Disparity between parents'' beliefs and expectations about illness and treatment and professionals'' behaviour further frustrated parents'' attempts to understand illness. Parents expressed a need for a range of accessible and specific information to support them through their negotiation of children''s illness. CONCLUSIONS: Communication with parents requires greater recognition of parents'' difficulties. Professionals have considerable potential to empower parents by sharing more information and skills. Such information should be consistent and address parents'' concerns, beliefs, and expressed needs if this potential is to be realised.     

Public Opinion about the Importance of Privacy in Biobank Research

Concerns about privacy may deter people from participating in genetic research. Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted. Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them. However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately. Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back. Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank. Assuring research participants that their privacy will be protected to the best of researchers'' abilities may increase participants'' acceptance of consent for broad research uses of biobank data by a wide range of researchers.     

Information needs of cancer patients in west Scotland: cross sectional survey of patients' views.

OBJECTIVE: To assess the needs of patients with cancer for information about their condition. DESIGN: Cross sectional survey of patients'' views by means of semistructured interview with questionnaire. SETTING: A regional cancer centre and two university hospitals in west Scotland. SUBJECTS: 250 (93%) of 269 cancer patients invited to participate in study who were selected by age, sex, socioeconomic status, and tumour site to be representative of cancer patients in west Scotland. MAIN OUTCOME MEASURES: Patients'' need to know whether they had cancer, the medical name of their illness, progress through treatment, how treatment works, side effects, chances of cure, and treatment options. RESULTS: 79% (95% confidence interval 73% to 84%) of patients wanted as much information as possible, and 96% (93% to 98%) had a need or an absolute need to know if they had cancer. Most patients also wanted to know the chance of cure (91% (87% to 94%)) and about side effects of treatment (94% (90% to 97%)). When the replies were cross tabulated with patients'' age, sex, deprivation score, and type of treatment there was a linear trend for patients from more affluent areas to want more information and those from deprived areas to want less. There was a strong preference for diagnosis of cancer to be given by a hospital doctor (60% (53% to 66%). CONCLUSION: Almost all patients wanted to know their diagnosis, and most wanted to know about prognosis, treatment options, and side effects.     

Legal obligation of physicians to disclose information to patients.

Obtaining a patient''s consent is a routine daily process for physicians, although many are unaware of the scope of this legal obligation. In 1980 the Supreme Court of Canada changed the law relating to informed consent; promotion of patient autonomy shifted the focus from a standard of professional disclosure to one of a "reasonable patient." Physicians have a legal obligation to disclose to patients specific information, the scope of which is determined by a court on the basis of a reasonable patient''s expectation and the circumstances of the case. This gives rise to many controversies in the practice of clinical medicine. It is difficult for physicians to know which treatment risks require disclosure, since this is decided by a court in a retrospective analysis of the evidence. Will the court recognize exceptions to the duty of disclosing information? If several health care professionals are involved in a patient''s care who has the duty to disclose information? Can this duty be delegated? This paper provides physicians with guidelines that are consistent with the promotion of patient autonomy and comply with the doctrine of informed consent. In addition, it suggests ways of improving awareness of the doctrine and procedures to ease its application.     

Psychiatric illness in inpatients with neurological disorders: patients' views on discussion of emotional problems with neurologists.

The prevalence of psychiatric morbidity in inpatients with neurological disorders and the extent to which it is detected by neurologists were measured by using a two stage model of psychiatric assessment and from information recorded in the patients'' medical notes. The prevalence of psychiatric morbidity was estimated as 39%, of which 72% was unrecognised by the neurologists. Only a minority of patients with an uncertain physical diagnosis had a psychiatric illness, showing the error in assuming that a patient''s physical symptoms arise from a psychological disturbance if an organic aetiology cannot be determined. When the patients were interviewed on their discharge from hospital they were divided on whether they had wished to discuss their mood with neurologists while they were in hospital. The reasons that they gave suggested that interactions between patients and doctors and the lack of ward facilities for private consultations with doctors are important determinants of hidden psychiatric morbidity in medical inpatients.     

Evaluating the Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies

Objectives

To establish the views of research volunteers on the consent process; to explore their views on the consent process in different research scenarios; to inform debate on emerging models of consent for participation in research.

Design, Setting and Participants

2,308 adult volunteers from the TwinsUK Registry (www.twinsuk.ac.uk) completed an online survey about their views on the consent process for use of their DNA and medical information in research. Their views on the re-consenting process in different scenarios were assessed.

Results

The majority of volunteers preferred to be informed of the identity of the main researcher of a study in which they are participating, which is contrary to current practice. Over 80% were willing to complete the consent process online instead of face to face. On the whole, respondents did not view their DNA differently from their medical information with regard to the consent process. Research participants were more willing to give broad consent to cover future research if their DNA was to be used by the original researcher than by another researcher, even if the disease under investigation varied, in contrast to the traditional ‘gold standard’ whereby specific consent is required for all new research projects.

Discussion

In some scenarios, research participants reported that they would be comfortable with not signing a new consent form for future research uses of their data and DNA, and are comfortable with secure, online consent processes rather than traditional face-to-face consent processes. Our findings indicate that the perceived relationship between research participants and researchers plays an important role in shaping preferences regarding the consent process and suggest that this relationship is not captured by traditional consent processes. We argue that the development of new formats of consent should be informed by empirical research on volunteers’ perceptions and preferences regarding the consent process.     

Medical disclosure and refugees. Telling bad news to Ethiopian patients.

The strong value in American medical practice placed on the disclosure of terminal illness conflicts with the cultural beliefs of many recent refugees and immigrants to the United States, who often consider frank disclosure inappropriate and insensitive. What a terminally ill person wants to hear and how it is told are embedded in culture. For Ethiopians, "bad news" should be told to a family member or close friend of the patient who will divulge information to the patient at appropriate times and places and in a culturally approved and recognized manner. Being sensitive to patients'' worldviews may reduce the frustration and conflict experienced by both refugees and American physicians.     

Patients’ attitudes to the summary care record and HealthSpace: qualitative study

Objective To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care.Design 103 semistructured individual interviews and seven focus groups.Setting Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation.Participants Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme.Methods Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances.Results Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person’s level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for “vulnerable groups.” Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness.Conclusion Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The “implied consent” model for creating and accessing a person’s SCR should be revisited, perhaps in favour of “consent to view” at the point of access.     

Legal Liability to Volunteers in Testing New Drugs

Scientists test new drugs by giving them to volunteers. In spite of every precaution, the drug may harm the volunteer. Under Canadian law, can he recover damages against any of the persons connected with the test? He cannot succeed against the scientist if the latter had made complete disclosure of the risks and had then obtained the volunteer''s free consent. Where the subject of a test is a child or one of unsound mind, the guardian''s consent probably does not protect the scientist from a possible claim by the subject. Where a married woman is a volunteer, her husband''s consent is unnecessary. The volunteer cannot succeed against his family physician who referred him to the scientist unless the physician took an active part in an experiment that was conducted negligently or without a proper consent. The volunteer cannot succeed against the maker unless he has negligently prepared the drug or given misleading information.     

A report from Japan: choices of Japanese patients in the face of disagreement

Background: Patients in different countries have different attitudes toward self-determination and medical information. Little is known how much respect Japanese patients feel should be given for their wishes about medical care and for medical information, and what choices they would make in the face of disagreement.
Methods: Ambulatory patients in six clinics of internal medicine at a university hospital were surveyed using a self-administered questionnaire.
Results: A total of 307 patients participated in our survey. Of the respondents, 47% would accept recommendations made by physicians, even if such recommendations were against their wishes; 25% would try to persuade their physician to change their recommendations; and 14% would leave their physician to find a new one.
Seventy-six percent of the respondents thought that physicians should routinely ask patients if they would want to know about a diagnosis of cancer, while 5% disagreed; 59% responded that physicians should inform them of the actual diagnosis, even against the request of their family not to do so, while 24% would want their physician to abide by their family's request and 14% could not decide. One-third of the respondents who initially said they would want to know the truth would yield to the desires of the family in a case of disagreement.
Interpretations: In the face of disagreement regarding medical care and disclosure, Japanese patients tend to respond in a diverse and unpredictable manner. Medical professionals should thus be prudent and ask their patients explicitly what they want regarding medical care and information.     

The Henrietta Lacks legacy grows

Now that the NIH has reached an agreement with Henrietta Lacks''s family concerning the use of the HeLa cell line, what lessons can we learn about informed consent and the unforeseen use of biological samples?On 7 August 2013, the US National Institutes of Health (NIH) announced that it had reached an agreement with the descendants of Henrietta Lacks concerning NIH-funded uses of the HeLa cell line [1], which, over the past 60 years has been featured in tens of thousands of experiments all over the world, and even in outer space.The origin of these cells, although never a secret, did not become well known until the 2010 publication of Rebecca Skloot''s book The Immortal Life of Henrietta Lacks. As was the practice of the time, Henrietta Lacks was not asked for permission to use samples of her tumour for research. For several decades, her family knew nothing about the HeLa cell line or its genetic tie to Henrietta Lacks—and to themselves. Henrietta Lacks''s contribution was little recognized and her family received no benefits from the widespread use of the cell line.On 11 March 2013, a team of researchers from The European Molecular Biology Laboratory (EMBL), led by Lars Steinmetz, published an article about the genomic characteristics of the one strain of the HeLa cell line [2]. Following current practice, they posted the whole genome sequence on-line, intending for it to serve as a resource to help other researchers; they did not intend or expect to set off an ethical controversy.But they did. Articles in the scientific press raised questions about publishing the genome sequence of the HeLa cell line [3], because although it had mutated enormously over the past 60 years, the data did provide some genomic information about Henrietta Lacks and, probabilistically, about her living descendants. As a result, Rebecca Skloot, on behalf of the Lacks family, raised concerns about their privacy.In the meantime, although the EMBL team had followed existing laws and regulations in its use of the HeLa samples, it responded to the controversy. The authors wrote to the Lacks family through Rebecca Skloot, apologizing for any distress the publication had caused, removed the sequence data from the internet, and offered to work with the family to find ways to make this potentially scientifically valuable information available while protecting the family''s interests and acknowledging Henrietta Lacks''s crucial role. At Steinmetz''s request, we conducted a bench-side ethics consult and provided some advice to the team as it strove to deal with this situation.The 7 August agreement between the NIH and the Lacks family resulted from discussions between Francis Collins and family members. It requires that any HeLa genomic information from NIH-associated studies be deposited in NIH''s ‘database of genotypes and phenotypes'' (dbGaP). A HeLa Genome Data Access Working Group made up of three scientists, two members of the Lacks family and one bioethicist will review requests to use the data, making recommendations to the Advisory Committee to the Director, and ultimately to the NIH Director. All publications that have used the data must include a specific acknowledgement of Henrietta Lacks and her family.This compromise is a reasonable resolution to an unusually extreme example of the increasing conflict between researchers'' need for broad availability of data (and samples) and legitimate privacy and autonomy interests of the people who are the sources of biological research materials and data. Unlike most research in recent decades, until this agreement, no one ever gave any permission for Henrietta Lacks'' tumour cells to be used for research. And the source of the HeLa cells is not only identifiable, but famous.However, the agreement is not completely enforceable. The Director of the NIH only has power over the NIH and the work it funds. We hope researchers not funded by NIH will abide by the agreement, both out of respect for the Lacks family and to help build trust among millions of other research subjects, but this cannot be guaranteed.A bigger issue is the many other human samples and data sets that are broadly accessible to researchers and sometimes the public. Some come with no consent, some have some consent, but few have actual and honest informed consent to be used for any purpose by any researchers or for data to be publicly available online. And although most are stripped of individual identifiers, that is cold comfort in an era of common breaches of data confidentiality and the use of other data sets to re-identify ‘anonymized'' data and samples [4].We cannot set up new administrative committees for every set of human data or biological samples. What we can do—and must do—is to make sure that, going forward, donors have knowingly made clear how they can, and cannot, be used. In addition, we must acknowledge that genomic information is no longer truly anonymous. These changes will require new understandings between researchers and research participants. The HeLa agreement provides a way to resolve that dilemma in an exceptional case; we now need to manage that conflict in common cases.One last note. Steinmetz and the EMBL group apologized to the Lacks family and took down the genomic data whilst a resolution could be explored. Jay Shendure and his group agreed to hold up publication of their similar paper [5] for the same end. The NIH seriously reached out to the family to make an agreement happen. And the Lacks family agreed. We think these acts—of consideration, patience and understanding, acknowledging and respecting the important role of research donors and participants—show an understanding of the underlying interests that researchers and research participants share. That all sides could find common ground in this most extraordinary case is perhaps the best result, and lesson, of the controversy.     

Informed Consent — A Reappraisal of Patients' Reactions

In response to the November 1972 ruling of the California Supreme Court requiring complete, detailed disclosure of risks for procedures and treatments, a survey was made of the reactions of one hundred patients to this decision. A fictional man was described with a clinical diagnosis of brain tumor, and then the procedure for cerebral angiography and all of that procedure''s potential complications were described. The majority of the patients surveyed responded that this complete disclosure of risks helped them in making an intelligent decision about giving consent for the procedure. However, 50 percent of these patients would have withheld consent for the procedure on learning of the complications. Although physicians would have reacted differently, it is certainly the patients'' right to make the choices they did.     

Patients' Perception of Quality of Pre-Operative Informed Consent in Athens,Greece: A Pilot Study

Background

We sought to perform a study to record and evaluate patients'' views of the way surgeons communicate informed consent (IC) in Greece.

Methodology/Principal Findings

A prospective pilot study was carried out in Athens from 9/2007 to 4/2008. The study sample was extracted from patients, operated by eight different surgeons, who volunteered to fill in a post-surgery self-report questionnaire on IC. A composite delivered information index and a patient-physician relationship index were constructed for the purposes of the analysis. In total, 77 patients (42 males) volunteered to respond to the questionnaire. The delivered information index scores ranged from 3 to 10, the mean score was 8, and the standard deviation (SD) was 1.9. All patients were aware of their underlying diagnosis and reason for surgery. However, a considerable proportion of the respondents (14.3%) achieved a score below or equal to 5. The patient-physician relationship scores ranged from 0 to 20, the mean score was 16 and the standard deviation (SD) was 4.3. The better the patient-physician relationship, the more information was finally delivered to the patient from the physician (Spearman''s rank-order correlation coefficient was 0.4 and p<0.001). Delivered information index was significantly higher among participants who comprehended the right to informed consent, compared to participants who did not (p<0.001), and among participants who were given information regarding other possible therapeutic options (p = 0.001). 43% of the respondents answered that less than 10 minutes were spent on the consent process, 58.4% of patients stated that they had not been informed about other possible therapeutic choices and 28.6% did not really comprehend their legal rights to IC.

Conclusions

Despite the inherent limitations and the small sample size that do not permit to draw any firm conclusions, results indicate that a successful IC process may be associated with specific elements such as the patient-physician relationship, the time spent by the physician to inform the patient, a participant''s comprehension of the right to IC and the provision of information regarding other possible therapeutic options.     

Disclosure of genetic information obtained through research

The rapid expansion of information and knowledge of genetics has implications for the question of whether, and under what circumstances, information discovered in the course of genetic research should be conveyed to research participants and/or their relatives. The aim of this paper is to propose an ethically defensible solution to a specific case example illustrating this problem. To do this we reviewed the literature to find answers to the following three questions: (1) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to research participants? (2) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to the relatives of research subjects? and (3) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research about former research participants who are now deceased? Our conclusion is that current U.S. federal guidelines governing the use of human subjects in research, as well as much of the current literature, do not adequately address the familial dimension inherent in genetic research, are virtually silent on the issue of sharing information of relevance to family members, and do not protect the deceased. It is our belief that this omission needs to be corrected and that explicit guidance on this issue needs to be provided to institutional review boards and researchers alike.     

What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study

Objective To obtain feedback from patients receiving palliative care and their relatives from various ethnic backgrounds about their experiences of the disclosure process and their satisfaction with information sharing during the illness.Design A qualitative study with semistructured single interviews.Setting Perth, Western Australia, and Winnipeg, Manitoba, Canada.Participants 72 participants registered with palliative care: 21 patient-family dyads in Perth and 14 dyads and 2 patients in Winnipeg.Results Participants described their experiences in great detail. The analysis indicates that in information sharing the process is as important as the content. The timing, management, and delivery of information and perceived attitude of practitioners were critical to the process. This applied to information interactions at all stages of the illness. Main content areas mentioned related to prognosis and hope. Hope can be conveyed in different ways. Secondary information from various sources is accessed and synthesised with the primary information. All patients, regardless of origin, wanted information about their illness and wanted it fully shared with relatives. Almost all patients requested prognostic information, and all family members respected their wishes. Information was perceived as important for patient-family communication. Information needs of patient and family changed and diverged as illness progressed, and communication between them became less verbally explicit.Conclusions Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers.