When and How to Initiate Discussion About Prognosis and End-of-Life Issues with Terminally Ill Patients

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1 132 Journal of Pain and Symptom Management Vol. 30 No. 2 August 2005 Original Article When and How to Initiate Discussion About Prognosis and End-of-Life Issues with Terminally Ill Patients Josephine M. Clayton, MBBS(hons), FRACP, FAChPM, Phyllis N. Butow, Mclin Psych, MPH, PhD, and Martin H.N. Tattersall, MB BChir, MSc, FRACP, MD Medical Psychology Research Unit (J.M.C., P.N.B., M.H.N.T.), School of Psychology and Faculty of Medicine, University of Sydney; and Sacred Heart Palliative Care Service (J.M.C.), St. Vincent s Hospital, Sydney, New South Wales, Australia Abstract The aim of this study was to explore by whom, how, and when discussions about prognosis and end-of-life issues should be initiated with terminally ill patients, and the context in which these issues can be optimally discussed. Focus groups and individual interviews were conducted with 19 palliative care (PC) patients, 24 carers, and 22 PC health professionals (HPs). Participants had disparate views regarding by whom and when such discussions should be initiated, although a similar range of perspectives was expressed by all participant groups. Four main approaches were identified: wait for the patient/carer to raise the topic; HPs to offer all PC patients and their carers the opportunity to discuss the future (preferred by the majority of participants); HPs to initiate the discussion when the patient/family need to know; or HPs to initiate the discussion when the patient/family seem ready. Four themes emerged regarding the optimal context of the discussion: importance of the relationship with HP, clarifying the patient/carers understanding and how much detail they want to know, negotiating who should be present during the discussion, and who should deliver the information. Initiating prognostic discussions with terminally ill patients requires considerable skill and sensitivity. Communication skills training for HPs may be required to optimize such discussions. J Pain Symptom Manage 2005;30: U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Terminally ill, palliative care, communication, prognosis, end-of-life issues Introduction Optimal communication with health professionals (HPs) has been identified by patients and Address reprint requests to: Josephine M. Clayton, MBBS(hons), Medical Psychology Research Unit, Blackburn Building DO6, University of Sydney, Sydney, NSW 2006, Australia. Accepted for publication: February 23, U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. their families as a critical aspect of end-of-life (EOL) care. 1,2 Patients in developed countries are increasingly expressing a preference to be well informed about their diagnosis and prognosis and to be involved with decisions about their care. 3 5 Having a doctor who is willing to talk about dying and who is sensitive to when patients are ready to discuss this issue has been identified by patients and their families as one of the most important needs at the EOL. 2 However, not all patients want to be fully /05/$ see front matter doi: /j.jpainsymman

2 Vol. 30 No. 2 August 2005 Discussing Prognosis & EOL Issues: Initiation 133 informed or to discuss their prognosis. 6,7 Hence a blanket policy of discussing prognosis and EOL issues with all dying patients may not serve their interests. Choosing how and when to raise EOL issues with terminally ill patients is difficult for HPs. Previous studies suggest that many patients feel it is up to the doctor to initiate discussion of EOL issues, 8,9 yet doctors may be reluctant to raise the topic for fear of upsetting the patient. In general medical settings, EOL conversations often do not occur or are conducted poorly. 10,11 Communicating EOL issues has been previously discussed in the literature, but mainly in the form of individual authors clinical experience and recommendations The views of patients and carers, who are the target of such discussions, should arguably have the greatest influence on clinical practice. To our knowledge, no previous studies have systematically examined terminally ill patients, their carers, and palliative care (PC) HPs views on this issue. The aim of this study was to explore PC patients, carers, and HPs views on by whom, how, and when discussions about prognosis and EOL issues should be initiated, and the context in which these issues can optimally be discussed. Methods Sample Specialist PC services are well established in Australia 16 and comprise teams with a range of medical, nursing, and allied HPs and volunteers. Each service commonly provides consultations across a variety of settings, including tertiary referral and district hospitals, inpatient PC units, and the community in homes, hostels, and nursing homes. Approximately 90% of referred patients have an underlying diagnosis of advanced cancer; the proportion of non-cancer diagnoses is increasing and is as high as 30% in some centers. 17 Patients are referred any time from diagnosis and many are still receiving antineoplastic treatment with palliative intent. The mean length of time that patients are referred prior to death varies in different services; for the services participating in the current study, this figure is approximately 8 to 12 weeks. Three groups felt to have important input were sampled: a) PC patients, b) carers of PC patients, and c) HPs working in PC. Patients and carers were eligible to take part if they were: 1) over 18 years of age, 2) English speaking, 3) well enough to take part in a focus group or interview, 4) able to give informed consent, and 5) referred to a specialist PC service and diagnosed with an incurable and progressive illness, or the carer of such a patient. Because sampling was aimed at achieving a diverse group of participants from different socioeconomic and cultural backgrounds, three PC services in Sydney with different population bases were approached to participate. Patients and carers were recruited from these services via hospitals, PC units and the community. PC doctors and community nurses identified suitable patients and carers and sought their approval to be contacted by a researcher. Patients and carers were then telephoned and invited to participate in the study. The HP participants were all currently working in PC and had at least two years experience in this area. Participants were selected across a range of disciplines and from various PC centers to ensure that relevant views were represented. A snowballing technique was used. 18 Suitable HPs were contacted by an investigator and invited to participate. All participants received an information sheet and gave written consent. Data Collection and Analysis Focus groups of 4 8 participants, supplemented by individual interviews with those unable to attend a focus group, were held separately with patients and carers, and were conducted by a PC physician (JC) and a clinical psychologist (PB) experienced in qualitative research methods. HPs were given a semi-structured individual interview either face to face or over the telephone, conducted by the first author (JC). The discussion format for the interviews and focus groups is outlined in Appendix 1. In this article, we report participants views regarding who should initiate prognostic discussions in PC consultations and the context in which these issues can optimally be discussed. Results of the other discussion items outlined in Appendix 1 will be reported elsewhere. Sociodemographic data about participants were collected via a brief questionnaire at the end of the interview or focus group.

3 134 Clayton et al. Vol. 30 No. 2 August 2005 The focus groups and telephone interviews were audiotaped and fully transcribed. Data analysis was informed by qualitative methodology. 19 The transcripts were read and individual points identified by the facilitators, using the participants own language where possible. These were discussed by both facilitators to ensure consistency of interpretation and were organized into mutually exclusive categories. Further focus groups and/or telephone interviews were conducted until no additional topics were raised. The final categories were reviewed by all investigators and any discrepancies were resolved. The study was approved by the ethics committees of participating institutions. Results Participants Twenty-four carers took part in 3 focus groups (21 participants) and 3 individual telephone interviews. Three additional carers declined to participate in either an interview or a focus group (all said they were too busy). Nineteen patients took part in 3 focus groups (14 participants) and 5 individual telephone interviews. Four additional patients declined to participate in either an interview or a focus group (either unwell or unstated reasons). The demographic characteristics of patients and carer participants are shown in Table 1 (demographic details of patients and carers who refused to participate are unavailable, because consent for this information was not obtained). Twenty-two PC HPs were interviewed, including 13 doctors (7 specialist physicians and 6 senior registrars in training), 4 nurses, and 5 allied health staff (an occupational therapist, physiotherapist, social worker, bereavement counselor, and pastoral care worker). One additional PC HP (a specialist physician) was invited to participate, but declined for unstated reasons. The HPs worked at 10 different PC services in two states of Australia in a variety of settings including teaching hospital, community, and inpatient PC units (many mixed). There was a range of PC experience among the HPs, with seven (32%) having more than 10 years experience (mean 8.3, S.D 4.9 years). Table 1 Demographic and Disease Characteristics of Patient and Carer Participants Carers Patients Participating Participating in Focus in Focus Group/ Group/ Individual Individual Interviews Interviews Characteristic (n 24) (n 19) Age Sex Male 8 8 Female Education School certificate or 9 3 below Completed high school 1 5 but not tertiary Tertiary education Underlying diagnosis of patient Advanced cancer Other 1 0 Who and When to Initiate Discussions About Prognosis and Eol Issues Patients, carers, and HP participants had diverse views regarding who and when to initiate discussions about prognosis and EOL issues. In general, participants preferred one of four main approaches: wait for the patient/carer to raise the topic; HPs to offer all PC patients and their carers the opportunity to discuss the future; HPs to initiate the discussion when the patient/family needs to know; or HPs to initiate the discussion when the patient/family seems ready. Summaries of these approaches are outlined below; participants quotes are shown in Fig. 1. Wait for the Patient or Carer to Raise the Topic. Some patients, carers, and a few HPs felt it should be up to patient and/or carer to initiate the discussion. These HPs said they would be directed entirely by patient or carer questions and would not normally offer to discuss the topic. The reasons why HPs said they may be reluctant to raise the discussion included fear of upsetting the patient or imposing information on the person that they are not ready to hear. In addition, some doctors said the inherent uncertainty of prognostic predictions made them concerned about volunteering inaccurate estimates that may only scare the

4 Vol. 30 No. 2 August 2005 Discussing Prognosis & EOL Issues: Initiation 135 Fig. 1. Participant quotes regarding who and when to initiate discussions about prognosis and EOL issues.

5 136 Clayton et al. Vol. 30 No. 2 August 2005 Fig. 1. Continued patient. A few patients and carers spoke of the patient s right to be protected and not have painful discussions about prognosis. One patient said it would be intrusive if the doctor offered to discuss prognosis. Offer All PC Patients and Their Carers the Opportunity to Discuss the Future. Some physicians tell patients and their carers early on that they are happy to answer questions about the future at any stage. Other physicians said they endeavor to raise issues about the future indirectly or provide a space for it to come up in the conversation. Several doctors and nurses said that it was important for the doctor, or the nurse if they were to be the primary HP seeing the patient, to offer to discuss prognosis and EOL issues with PC patients and their carers. These doctors and nurses perceived a great fear among patients and their families in discussing

6 Vol. 30 No. 2 August 2005 Discussing Prognosis & EOL Issues: Initiation 137 these issues. They said patients and carers may find it difficult to initiate the discussion themselves and needed permission to feel comfortable in raising the topic. In addition, there was a sense of professional responsibility in giving patients and their families the opportunity to talk about EOL issues so they could decide how they wished to spend their remaining lives, be adequately prepared, make arrangements within the family for their care, and be less fearful. Peoples unspoken fears about dying were felt to be frequently worse than reality. Some allied health staff said they wouldn t offer to prognosticate themselves but may explore the patient s understanding of their situation. However, the allied HPs mostly felt it was appropriate for doctors to offer to discuss prognosis and to proactively make this an accessible topic for patients. Most patients and carers said they thought it would be alright for the doctor to offer to discuss prognosis provided they had the option of saying they did not want this information. Some patients and carers said that it is important that the doctor knows you and is sensitive, then it would be acceptable for him or her to offer to discuss prognosis. Of note, no patients, carers, or HPs felt that the doctor or nurse should bring up the facts out of the blue without checking first whether the patient or carer wanted this information, as it was felt to be important to respect people s right not to know. Initiate the Discussion When the Patient and/or their Family Need to Know. The main underlying theme in this category was avoidance of harm. Some doctors said they would only offer to discuss EOL issues if the patient had unrealistic expectations and/or there was an important decision to be made or if patient was rapidly deteriorating. Likewise, all nurses said they would be more comfortable raising a discussion about EOL issues or prognosis if they perceived a particular reason to do so. That is, when the HP perceived that the patient or their family could be harmed by not knowing their prognosis. Examples of the latter include when a patient was making plans for a holiday in the distant future when it was obvious that they may not live this long. In this circumstance, they gently enquire about the persons understanding of their situation and suggest that they take their holiday sooner rather than later. One physician said he would only offer to discuss prognosis or EOL issues if it was necessary for an immediate clinical decision, such as the need for a do not resuscitate order. In addition, the nurses said they would talk about the future with patients or families for the purposes of discharge planning when there had not been open acknowledgment that the person was dying and it was not clear how they would manage at home. Initiate the Discussion When the Patient and/or their Family Seem Ready. Some patients, carers, and HPs said that HPs should initiate the discussion when they think the patient is ready. These patients, carers, and HPs said the doctor or nurse has to use their intuition, common sense, or judgment to gauge when the person is ready (for example, by being sensitive and responsive to verbal or non-verbal cues from the patient). Setting the Scene Four themes were raised regarding the optimal context of discussions about prognosis and EOL issues: importance of the relationship with HP, clarifying the patient/carers understanding and how much detail they want to know, negotiating who should be present during the discussion, and who should deliver the information. Summaries of these themes are presented below; participants quotes are shown in Fig. 2. Relationship with Health Professional. Most HPs emphasized the importance of knowing the patient as a person and developing a trusting and caring relationship so that the person would feel comfortable discussing their future. Some HPs felt that the doctor/patient relationship was the key to having effective discussions about dying and prognosis. The importance of listening and providing emotional support, while not feeling that you have to solve all problems, was highlighted. The value of having a calm, unhurried, warm, and gentle manner was raised in particular by allied health staff. Some doctors pointed out that the HP themselves needs to be comfortable in discussing EOL issues that is, they have the knowledge base and have faced their own mortality. The use of humor was also mentioned by a few HPs.

7 138 Clayton et al. Vol. 30 No. 2 August 2005 Fig. 2. Participant quotes regarding the optimal context of discussions about prognosis and EOL issues. Patient and carers strongly emphasized the importance of being comfortable with their HP when discussing prognosis. They said that it is vital for the HP to show compassion and respect and to ensure that adequate support is present. Some patients spoke of the devastating

8 Vol. 30 No. 2 August 2005 Discussing Prognosis & EOL Issues: Initiation 139 Fig. 2. Continued

9 140 Clayton et al. Vol. 30 No. 2 August 2005 effect of having bad news broken when the doctor did not show any signs of compassion. Clarify the Patient s/carer s Understanding and How Much Detail They Want to Know. Regardless of whether the patient or carer initiates the discussion about prognosis or whether the HP raises it or offers to discuss it, all of the doctors and nurses and most of the allied HPs stated that it is important to clarify the patients understanding of their prognosis and explore exactly what how much detail they want to know before launching in with an extended explanation about what to expect. For example, many HPs said they had made the mistake of answering what they thought was the patient s question about prognosis only to find out that the patient hadn t wanted all the information that had been given. Some HPs also said they asked the patient what they thought was the answer to their question, for example, how long they had to live or what may happen. In the process of doing this, the patient may answer the question themselves, and, therefore, the HP just has to confirm what they are saying. A few HPs said they do this but also reassure the patient that they will give their honest opinion afterwards without modifying it according to what the patient says. Some carers also said it is important for HPs to clarify what the patient is asking and whether they really want to know the answer, but patients did not raise this issue. However, all patients, carers, and HPs said that it is important to tailor the information to the individual patient s preference and be aware that this may change over time. Negotiate Who Should be Present During the Discussion. Some HPs stated that it is important to make sure that family members are present when discussing bad news. However, other HPs said that either the patient or carer may be more likely to raise EOL issues on their ownbecause eachis tryingto protecttheother. In addition, it can sometimes be easier to have more in-depth discussions one to one. Most patients and carers wanted someone from their immediate family present but one patient was angry when her initial diagnosis was disclosed in front of her son, as she felt she should be the one to tell him. Some patients said they valued being able to discuss sensitive topics, such as dying, on their own with a PC HP, because they did not want to worry their family about these issues. In general, participants felt that it was important to negotiate who should be present when bad news was given, for example when discussing new test results. On the other hand it was a different situation when the patient asked a direct question about their prognosis in the context of an established relationship with their HP. In the latter situation the patient is already choosing the time to ask the question. Negotiate Who Should Deliver the Information. Most patients and carers, if they wanted to have the discussion at all, wanted to discuss prognosis and EOL issues with a doctor or nurse. However, one carer said her husband wanted their priest and not the doctor to deliver any bad news and had requested this be documented in the medical record. Another patient requested that the family be told first and for the family, not the doctor, to be the one to tell him. Discussion This study revealed varying and sometimes disparate views among the patients, carers, and HP participants regarding who should initiate discussions about prognosis and EOL issues. However, provided the patient and/or carer is given the option not to hear the prognosis and discuss EOL issues and the topic is broached in a sensitive manner, most participants felt that it was appropriate and important for the doctor or nurse to make this an accessible topic, because the patient might find it difficult to raise it themselves. In addition, there may be adverse consequences if the patient and their family do not have the opportunity to discuss these issues and adequately prepare for their death. On the other hand, there were some participants who were reluctant for the doctor or nurse to initiate the topic for fear of harming the patient if they were not ready to think about these issues. Of note, although participants in the current study had different opinions regarding who should initiate the discussion, a similar range of perspectives was expressed by patients, carers, and HPs. In general, this was seen as a very difficult and important issue. HPs described it as a balancing act, where you need

10 Vol. 30 No. 2 August 2005 Discussing Prognosis & EOL Issues: Initiation 141 to constantly listen, assess, and weigh up the benefits versus potential harm of raising the topic in each individual situation. The findings in this study contrast to those of Miyaji, 20 who found that the majority of physicians interviewed report giving prognostic information to dying patients on a wants to know basis only, where the absence of questioning is interpreted as a sign of the patients unwillingness to know. However, the physicians in Miyaji s study comprised general medical and surgical doctors from only one hospital in the USA, and patients and carers views were not examined. Perhaps PC HPs are in general more willing than general physicians/surgeons to raise the topic of dying. However, the fact that some PC HPs in the current study were also reticent about raising EOL issues with patients suggests that this remains a challenging and difficult area. Whereas one patient in the current study felt it could be intrusive for the doctor or nurse to offer to discuss prognosis and EOL issues, the majority felt that this would be helpful. In support of the notion of HPs offering to discuss prognosis and EOL issues is the finding that many patients do not request the information that they want about prognosis without prompting. 21,22 Offering this information allows reticent patients to express their needs without forcing information on those who do not wish to receive it. A recent survey 23 found that about 1 in 5 patients with incurable cancer do not wish to discuss prognosis. Butow et al. 3 found that patients wish for information declined as their illness worsened. In the current study, patients varied in the amount of information that they would want regarding prognosis and EOL issues. Together these findings stress the importance of clarifying with patients how much detail they want to know. There were a variety of views expressed by participants regarding the appropriate timing and indications for initiating discussions about prognosis and EOL issues. HPs views on this ranged from a proactive approach of raising it early on with all patients, to using their intuition regarding when the patient/carer may be ready, to initiating the discussion when it becomes apparent that by not raising the topic there could be potential harm (for example when the patient has potentially damaging unrealistic expectations or is rapidly deteriorating). Patients and carers, on the other hand, mostly said that the doctor or nurse needs to be guided by their common sense or intuition about the timing of raising the topic. Although no studies have previously examined the issue of appropriate timing of EOL and prognostic discussions in a PC setting, the views of some participants in the current study are consistent with recent recommendations in the literature 12,13 that HPs should offer to discuss EOL issues routinely with all seriously ill patients. Regarding the preferred context for the discussion, all participant groups strongly emphasized the importance of the HP/patient or carer relationship. This could be difficult for PC HPs, who have been referred patients very late in the course of their illness, leaving little time to build relationships with patients before the issue of discussing dying becomes paramount. Interestingly, none of the participants raised this as an issue or said that prognosis should not be discussed on the first visit. Perhaps the necessary rapport and trust can be developed relatively quickly in this setting. There was a wide divergence of needs and wishes expressed by patients regarding whether they would prefer to be on their own or have their partner or family present during discussions about prognosis and EOL issues, suggesting that clarification and negotiation is essential. Our findings regarding the optimal context for prognostic and EOL discussions in a PC setting are similar to those of a study of patients and HPs views on communicating prognosis to patients with newly diagnosed metastatic cancer. 24 Themes identified in this study included communication within a caring, trusting, long-term relationship, and open and repeated negotiations for patient preferences for information. Limitations and Applicability of Findings Qualitative methodology dictates small sample sizes. The use of qualitative methods such as those used in the current study are common in exploratory studies and can generate hypotheses and provide rich descriptive information about a phenomenon. However, it is difficult to make assumptions about the generalizability of data obtained using such methodology. The sample in this study is limited to Englishspeaking patients and carers (some of the carers were caring for patients from non-english

11 142 Clayton et al. Vol. 30 No. 2 August 2005 speaking backgrounds) from three different PC services in an urban setting in Sydney with an underlying illness of mainly advanced cancer. The patient and carer participants may therefore not be representative of Australia s culturally diverse population and issues specific to certain cultural groups have not been explored. The educational background of the carer and patient participants was higher than the general population. Therefore, the views of people with lower educational backgrounds may be underrepresented. The HP participants, however, came from various disciplines and from several different PC centers in Australia servicing culturally diverse populations in mainly urban settings. Implications and Future Research The diversity of views expressed by the participants in this study indicates that it is difficult to be prescriptive regarding if and when prognosis and end-of-life discussions should be initiated with PC patients and their families. Overall, however, the findings suggest that it is better to err on the side of ensuring that prognosis and EOL issues are accessible topics for terminally ill patients and their families, that is, provided that HPs are sensitive about the way they raise the subject and first explore the patients understanding. The importance of clarifying exactly what patients want to know was highlighted by this study. One can not assume that a patient who has been referred to PC is aware they are dying or wants a lot of prognostic information. Prognostic data have many purposes and if one does not know exactly what is being asked and why, one cannot respond appropriately. A wider survey of PC patients, carers, and HPs is needed to assess the generalizability of these findings, particularly with regard to who should initiate and the optimal timing of the discussion. Despite having extensive clinical experience in PC, only a small number of the HP participants in this study had received formal communication skills training. Perhaps the HPs who were reluctant to initiate EOL conversations with patients would be more comfortable in doing so if they had formal and specific communication skills training regarding discussing EOL issues. The fact that many patients and carers suggested that HPs need to use their intuition to know when PC patients are ready to discuss prognosis and EOL issues also emphasizes the need for communication skills training programs. HP communication skills do not reliably improve with experience alone. A large number of studies have demonstrated that relatively brief training programs can result in considerable improvement in communication skills, 25 and that these skills are maintained. 26 Acknowledgments The authors are grateful to all the patient, carer, and HP participants for giving their time and energy to this study, and to the staff of the involved PC services who assisted with patient identification. They also acknowledge Professor Robert Arnold, from the University of Pittsburgh, USA, for contributing helpful comments to an earlier version of the manuscript. The authors also thank the National Health and Medical Research Council for providing support to JMC with a Medical Postgraduate Research Scholarship. References 1. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284: Wenrich MD, Curtis JR, Shannon SE, et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 2001;161: Butow PN, Maclean M, Dunn SM, et al. The dynamics of change: cancer patients preferences for information, involvement and support. Ann Oncol 1997;8: Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study of UK cancer centres. Br J Cancer 2001; 84: Fallowfield LJ. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 2002;16: Leydon G, Boulton M, Moynihan C, et al. Cancer patient s information needs and information seeking behaviour: in depth interview study. BMJ 2000;320: Fried T, Bradley E, O Leary J. Prognosis communication in serious illness: perception of older patients, caregivers and clinicians. J Am Geriatr Soc 2003;51:

12 Vol. 30 No. 2 August 2005 Discussing Prognosis & EOL Issues: Initiation Emanuel L, Barry M, Stoeckle J, et al. Advance directives for medical care: a case for greater use. N Engl J Med 1991;324: Smucker W, Ditto P, Moore K, et al. Elderly outpatients respond favourably to a physician-initiated advance-directive discussion. J Am Board Fam Pract 1993;6: SUPPORT investigators. A controlled trial to improve care for seriously ill hospitalized patients: the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. JAMA 1995; 274: Hofmann JC, Wenger NS, Davis RB, et al. Patient preferences for communication with physicians about end-of-life decisions. Ann Intern Med 1997; 127: Quill TE. Initiating EOL discussions with seriously ill patients. Addressing the Elephant in the room. JAMA 2000;284: Larson D, Tobin D. End-of-life conversations, evolving practice and theory. JAMA 2000;284: Baile WF, Glober GA, Lenzi R, et al. Discussing disease progression and end-of-life decisions. Oncology (Huntingt) 1999;13: Balaban RB. A physician s guide to talking about end-of-life care. J Gen Intern Med 2000;15: Maddocks I. Palliative care in the 21st century. Med J Aust 2003;179(6S):S4 S Currow D. Australia: state of palliative service provision J Pain Symptom Manage 2002;24: Rice PL, Ezzy D. Qualitative research methods: a health focus. Melbourne: Oxford University Press, Pope C, Mays N. Qualitative research in health care. 2nd ed. London: BMJ Books, Miyaji N. The power of compassion: truth-telling among American doctors in the care of dying patients. Soc Sci Med 1993;36: Kaplowitz SA, Campo S, Chui WT. Cancer patients desire for communication of prognosis information. Health Commun 2002;14: Brown RF, Butow PN, Dunn SM, Tattersall MH. Promoting patient participation and shortening cancer consultations: a randomised trial. Br J Cancer 2001;85: Hagerty R, Butow P, Ellis P, et al. Cancer patients preferences for communication in the metastatic setting. J Clin Oncol 2004;22: Butow PN, Dowsett S, Hagerty R, Tattersall MHN. Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer 2002;10: Fellowes D, Wilkinson S, Moore P. Communication skills training for health care professionals working with cancer patients, their families and/or carers. Cochrane Database Syst Rev 2003;2:CD Wilkinson S, Bailey K, Aldridge J, Roberts A. A longitudinal evaluation of a communication skills programme. Palliat Med 1999;13: Appendix 1 Focus Group and Individual Interview Discussion Format Discussion Format for Health Professionals Discussions about the future in a palliative care setting are often difficult. I am referring not only to discussions about life expectancy but also the likely symptoms that a patient may face in the future and the likely mode of death. How do you tend to approach questions about the future from palliative care patients? How do you tend to approach questions about the future from carers of palliative care patients? How do you think information about the future should be portrayed during a palliative care consult? Do you ever initiate discussion about the future during a palliative care consult? In what circumstancesdoyouthinkthisisappropriate? When discussing the future with a palliative care patient or their carers, is there any way of communicating hope? If a palliative care patient (or their carer) asked about their life expectancy: What words would you use? What sort of time frames would you give (if any)? Would you give any statistics? Would you draw survival graphs or use any other aids? What advice would you give to palliative care trainees regarding discussion of the future? Discussion Format for Patients and Carers Prognosis refers to likely future developments and life expectancy. What information do you think is important for your palliative care doctor to tell you (or the person you care for) about your (their) prognosis? (not necessarily during the first consult) What information do you think is important for a palliative care doctor to tell

13 144 Clayton et al. Vol. 30 No. 2 August 2005 carers about the prognosis of the person they care for? How do you think information about prognosis should be portrayed during a palliative care consult? Who should initiate discussion about prognosis during a palliative care consult? Should palliative care doctors offer to discuss prognosis with you (for carers: or the person you care for or with you the carer) at certain times?