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The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues†
Article first published online: 23 MAR 2005
Copyright © 2005 American Cancer Society
Volume 103, Issue 9, pages 1957–1964, 1 May 2005
How to Cite
Clayton, J. M., Butow, P. N. and Tattersall, M. H. N. (2005), The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer, 103: 1957–1964. doi: 10.1002/cncr.21010
See also pages 1965–75, this issue.
- Issue published online: 18 APR 2005
- Article first published online: 23 MAR 2005
- Manuscript Accepted: 6 JAN 2005
- Manuscript Revised: 21 DEC 2004
- Manuscript Received: 1 SEP 2004
- National Health and Medical Research Council on a Medical Postgraduate Research Scholarship
- terminally ill;
- palliative care;
- end-of-life issues
The difficulty of negotiating the concerns of family members while also respecting the needs of the patient adds complexity to the task of discussing prognosis and end-of-life (EOL) issues with terminally ill cancer patients. The informational needs of caregivers may be different from those of the patients themselves with regard to these topics. However, to the authors' knowledge, this issue has received relatively little research attention.
The authors conducted focus groups and individual interviews with 19 patients with far advanced cancer and 24 caregivers from 3 palliative care (PC) services in Sydney and 22 PC health professionals (HPs) from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Additional focus groups or individual interviews were conducted until no additional topics were raised. The participants' narratives were analyzed using qualitative methodology.
The participants had varying views regarding whether patients and caregivers should be told different information concerning prognosis and EOL issues. Three themes were identified from the transcripts regarding meeting the informational needs of both the patients and caregivers: 1) the importance of consistency and openness, 2) the specific information needed to care for the patient, and 3) the value of having separate discussions with the patient and caregiver. A desire to restrict the patient's access to information by the caregiver or vice versa was reported by the HPs to be one of the most challenging issues when discussing prognosis and EOL issues. Three themes were identified with regard to this issue: 1) autonomy versus protection, 2) negotiating family dynamics, and 3) difficulty using interpreters.
The results of the current study emphasized the importance of considering the distinct informational needs of caregivers, as well as those of the patient, when discussing prognosis and EOL issues. Cancer 2005. © 2005 American Cancer Society.
Discussing prognosis and end-of-life (EOL) issues with terminally ill cancer patients and their families is challenging for health professionals (HPs). The difficulty of negotiating the concerns of family members while also respecting the patient's rights and well-being adds complexity to this task. Clinicians frequently face the dilemma of how much to say and to whom?1 when communicating with terminally ill cancer patients and their families.
Family members play a key role in the care and support of terminally ill cancer patients. Families need information to enable them to care for their dying relative.2, 3 Conversely, many patients want less information about their illness as they become sicker.4 Thus, caregivers may want more explicit information concerning the dying process, for example, than patients. However, to our knowledge this area has received little previous attention in the literature.
The situation is complicated in multicultural societies. In Western cultures, in which autonomy reigns, the wishes of the patient receive priority over those of the family members with regard to what is told and to whom concerning prognosis.5, 6 Patients from other cultural backgrounds may prefer nondisclosure, or disclosure negotiated through the family, when life expectancy is short.7, 8
To our knowledge, little is known regarding what expert clinicians, terminally ill cancer patients, and their caregivers think about these issues. Palliative care (PC) HPs have particular interest and experience in this arena, in part due to the centrality of these issues to their clinical practice. Furthermore, they may be a self-selected group of people who have innate skills in this area. Therefore, the views of these HPs may have particular value not only in their own clinical setting, but for general oncology. The views of terminally ill cancer patients and caregivers, who are the target of such discussions, should arguably have the greatest influence on clinical practice. The objective of the current study was to explore the views of terminally ill patients, their caregivers, and those of PC HPs on questions such as: 1) do terminally ill patients and their caregivers have different informational needs with regard to the patient's prognosis?; 2) do PC HPs provide different information concerning prognosis and EOL issues to patients versus caregivers?; and 3) how do PC HPs manage the situation if the patient and/or caregiver attempt to protect each other by withholding information regarding the person's illness? Australia is an ideal setting in which to conduct such a study because of the established nature of PC practice in this country.9
MATERIALS AND METHODS
Specialist PC services in Australia are comprised of teams with a range of medical, nursing, and allied HPs and volunteers. PC medicine is a distinct medical specialty in Australia, with its own specific training program. Each PC 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. Unlike the eligibility criteria for hospice care in the U.S., patients can be referred at any time from diagnosis and many still receive antineoplastic treatment with palliative intent.10 Occasionally, patients who are receiving curative chemotherapy are seen by the PC service for symptom control. However, none of the patients participating in the current study had any chance of cure from their malignancy. Patients usually remain under the primary care of their family medical practitioner and often are concurrently receiving specialist care from both an oncologist and the PC team. 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 8–12 weeks.
Three groups believed to have important input were sampled: 1) PC patients, 2) caregivers of PC patients, and 3) HPs working in the PC setting. Patients and caregivers were eligible to take part if they were: 1) age > 18 years, 2) English-speaking, 3) well enough to take part in a focus group or interview, 4) able to provide informed consent, and 5) referred to a specialist PC service and diagnosed with an incurable and progressive illness, or the caregiver of such a patient. Sampling was aimed at achieving a diverse group of participants from different socioeconomic and cultural backgrounds; therefore, three PC services in Sydney with different population bases were approached to participate. Patients and caregivers were recruited from these services via hospitals, PC units, and the community.
PC doctors and community nurses identified suitable patients and caregivers and sought their approval to be contacted by a researcher. Patients and caregivers were then telephoned and invited to participate in the study.
The HP participants were all currently working in PC and had at least 2 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 technique11 was used in which the initial participants were asked to suggest other HPs who may be willing to participate in an interview. Suitable HPs were contacted by an investigator and invited to participate.
All participants received an information sheet and provided written consent.
Data Collection and Analysis
Focus groups of four to eight participants, supplemented by individual interviews with those unable to attend a focus group, were held separately with patients and caregivers and conducted by a PC physician (J.C.) and a clinical psychologist (P.B.) experienced in qualitative research methods. HPs were given a semistructured individual interview, either face to face or over the telephone, conducted by the first author (J.C.). The discussion format for the interviews and focus groups is outlined in Table 1. In this article, we are reporting the views of the participants regarding the different informational needs of patients compared with caregivers with regard to prognosis and EOL issues, whether these discussions should be held with the patient and caregiver together or separately, and the situation when families are trying to withhold information from the patient and vice versa. Results of the other discussion items outlined in Table 1 will be reported elsewhere. Sociodemographic data regarding participants were collected via a brief questionnaire at the end of the interview or focus group.
|Discussion format for health professionals|
|Discussions about the future in a palliative care setting are often difficult. I am referring not only to discussions regarding life expectancy but also the likely symptoms that a patient may face in the future and the likely made 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 the caregivers 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 circumstances do you think this is appropriate?|
|• When discussing the future with a palliative care patient or their caregivers, is there any way of communicating hope?|
|• If a palliative care patient (or their caregiver) 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 caregivers|
|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 caregivers 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 caregivers: or the person you care for or with you the caregiver) at certain times?|
The focus groups and telephone interviews were audiotaped and fully transcribed. Data analysis was informed by qualitative methodology.12 The transcripts were read and individual points identified by the facilitators, using the participants' own language when possible. These were discussed by both facilitators to ensure the 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.
Twenty-four caregivers took part in 3 focus groups (21 participants) and 3 individual telephone interviews. Nineteen patients took part in 3 focus groups (14 participants) and 5 individual telephone interviews. The demographic characteristics of the patients and caregivers are shown in Table 2.
|Characteristic||Caregivers participating in focus group/individual interviews (n = 24)||Patients participating in focus group/individual interviews (n = 19)|
|Median age (yrs) (range)||53 (23–71)||68 (36–83)|
|School certificate or below||9||3|
|Completed high school but not tertiary||1||5|
|Patient's underlying diagnosis|
|Primary site of malignancy|
|Median time since referral of patient to palliative care (range)||14 weeks (2 weeks–2.5 years)||12 weeks (3 weeks–2 years)|
|Current residence of patient|
|Home or home of family/friends||18||16|
|Inpatient palliative care unit||5||2|
|Caregiver's relationship to patient|
Twenty-two PC HPs were interviewed including 13 physicians (7 specialist PC physicians and 6 senior PC registrars in training), 4 nurses, and 5 allied health staff (an occupational therapist, a physiotherapist, a social worker, a bereavement counselor, and a pastoral care worker). The HPs worked at 10 different PC services in 2 Australian states (New South Wales, South Australia) in a variety of settings including a teaching hospital, and community and inpatient PC units (many HP participants saw patients in a combination of these settings). There was a range of PC experience among the HPs with 7 HPs (32%) having > 10 years' experience (mean of 8.3 years, with a standard deviation of 4.9 years).
Three themes were identified from the transcripts regarding meeting the informational needs of both the patients and caregivers: 1) the importance of consistency and openness, 2) the specific information needed to care for the patient, and 3) the value of having separate discussions with the patient and caregiver. A desire to restrict the patient's access to information by the caregiver or vice versa was reported by HPs to be one of the most challenging issues when discussing prognosis and EOL issues. Three themes were identified with regard to this challenge: 1) autonomy versus protection, 2) negotiating family dynamics, and 3) difficulty using interpreters. Summaries of these themes are presented below; participant quotes are available from the corresponding author on request.
Meeting the Informational Needs of Both Patients and Caregivers
Importance of consistency and openness
When discussing prognosis and EOL issues, many HPs said they would encourage open discussion with the patient and family together, unless the patient was confused or death was imminent. HPs stated that caregivers frequently have difficulty discussing EOL issues in front of the patient because they want to protect them. Likewise, the patient may wish to protect the caregiver. In these situations, HPs said they would explore the reasons behind any shielding of information and urge that it be shared. All HPs emphasized the importance of providing consistent information to the patient and caregiver, provided the patient gives consent for this information to be disclosed to the caregiver. This helps to maintain trust and prevent barriers from forming between the patient and family.
Likewise, some patients and caregivers said that it was important for the caregiver to be told consistent information, so that both patient and caregiver had the same understanding of what to expect. They believed this made it easier for them to talk openly about the future.
Specific information needed to care for the patient
Several HPs and caregivers stated that patients and caregivers have different needs for information concerning EOL issues and prognosis. The specific informational needs of caregivers were often emphasized. For example, caregivers may want information regarding how much time to take off work, what is involved in caring for a dying person at home, how to tell when the patient has died, and what needs to be done after they die. In addition, many HPs said they may provide more information to caregivers than the patient regarding potential complications around the time of death (e.g., seizures). Similarly, many caregivers said they needed this information to be prepared, whereas they felt the patient would want more general information concerning prognosis and EOL issues. They believed it could be cruel for the patient to be told details or information regarding potential perideath complications. Some caregivers said the person they were caring for did not want to know about their prognosis but had given their permission for the caregiver to discuss it with the PC team. Some patients confirmed this, saying they did not want to know their prognosis but were happy for their family to know. Patients did not provide specific details concerning what type of information would be useful for them versus their caregivers to know.
Value of having separate discussions with the patient and caregiver
Several HPs said although it is important not to give conflicting information, it may be very helpful to have separate one–to-one discussions with patients and their caregivers regarding prognosis and EOL issues because this makes it easier to explore their unique concerns and informational needs. Having separate conversations allowed honesty without worrying about what the other party was feeling. Some nurses said it is useful to have the discussion initially with both the patient and caregiver present and then a separate discussion with only the caregiver focused on the caregiver's needs. The importance of obtaining the patient's permission first to discuss their condition with family members was emphasized unless the patient was gravely ill or incapacitated.
Some HPs said caregivers are often more capable of having frank discussions concerning prognosis than the patient. In addition, a few physicians said that it is psychologically easier for them to discuss prognosis with the family than with the patient. Conversely, some HPs said it is occasionally the family members who are less able to cope with prognostic information than the patient.
Many caregivers and some patients wanted to have a discussion with the HP alone regarding EOL issues. They wanted to raise issues that may be difficult to discuss in front of the other, such as what may occur around the time of death and how the other person is coping. In contrast, some caregivers were concerned that it was unethical to discuss the patient's prognosis without the patient present. Although many patients said they would be happy for the HP to have a separate discussion with family members regarding their condition, most said they would want to give permission first. In addition, some patients believed they could cope with prognostic information better than their family. Conversely, some patients said it was important to have the support of someone in their family with them during these discussions because of the potential distress that they may feel.
A Desire to Restrict the Patient's Access to Information by the Caregiver or Vice Versa
Autonomy versus protection
The situation in which a family asks the HP to withhold the diagnosis or prognosis from the patient, who often but not always is from a non-English-speaking background, was described by HPs as a delicate balance of the families' versus the patient's right to information, autonomy, nonmaleficence, and confidentiality. Information regarding prognosis and diagnosis was not viewed as being owned by the patient but rather as having an effect on the entire family. The HPs approached this situation in different ways. Some said they would try and encourage the family to have an open conversation and acknowledge the condition of the patient. These HPs attempt to explain to families that patients are often aware they have a terminal prognosis, and that it can be very frightening and isolating for them not to talk about it. Other HPs said they would clarify beforehand what the family wanted the patient to know, and reassure the family that they would respect this wish and not raise the issue with the patient. However, they would warn families that if the patient asked them a direct question they would answer it honestly. One physician said he reassured families that if the patient asked questions concerning their prognosis he would ensure that the family was present when he gave the answers. A few HPs said they would use a combination of approaches, encouraging the family to have an open conversation but also clarifying what they wanted the patient to know and negotiating what is actually discussed. Some physicians stated the reason why they respected the wishes of family members with regard to how much information is given to the patient is that it may be important for their bereavement. For example, so family members feel they have fulfilled their duty to protect the patient from potentially distressing information.
The situation in which a patient sought to withhold information from family members was reported less frequently by HPs and was not seen as a dilemma because of the patient's right to confidentiality. It became a challenging issue when it affected the family's ability to care for the patient (e.g., if the patient did not want their spouse or immediate family members to be informed of their terminal prognosis).
A few caregivers expressed a need to protect the patient from being given distressing news by HPs and emphasized the patient's right not to know this information. Some patients believed it would be taking away their rights if a physician discussed information about them, including bad news, with their family but not with them. One patient said he believed it was up to the family to decide what information was given to the patient.
Negotiating family dynamics
HPs raised the ethical dilemma that is encountered when different family members have different opinions regarding how much information should be given to the patient. It may be easier for the HP to listen to the most assertive family member to keep the peace, but it may not be in the best interest of the patient. Most HPs suggested family conferences in this situation and emphasized the skill needed to facilitate an equal voice for all involved. Other HPs suggested negotiating a family spokesperson who would then makes decisions and communicate information to the rest of the family; the choice of spokesperson may be based on patient preferences or involve a more complex process if the patient is confused. Patients and caregivers did not raise this issue.
Difficulty with the use of interpreters
The added complexity of using interpreters when discussing prognosis and EOL issues was frequently mentioned by HPs. Some HPs said that families are occasionally very reluctant to use an official interpreter and insist on translating themselves. HPs believed this was because the family wanted to act as an informational gatekeeper. However, some HPs commented that the families might be concerned about confidentiality if the official interpreter was a member of their local community. One caregiver whose father did not speak English highlighted the difficulties when interpreters provide a more positive message than the physician. Patients did not raise this issue. However, all the patient participants in the current study spoke English.
The current study suggests that terminally ill cancer patients and their caregivers have very different needs for information concerning prognosis and EOL issues. The caregiver requires more detailed information than the patient about the dying process. In other cases, although less frequently reported by participants in the current study, the patient may desire more details concerning their prognosis than the caregiver. Although many participants emphasized the importance of open discussion and consistent information, it may not be possible to meet the informational needs of both the patient and their family members without having additional individual discussions. This allows the HP to explore the individual concerns and informational needs without the barrier of patient/caregiver protectiveness. All participant groups emphasized the issues of confidentiality and sensitivity with regard to obtaining the patient's permission prior to talking with the caregiver.
Previous studies have emphasized the caregiver's need for information.1, 13 This need is often unmet. For example, Jones at al.14 found that, of 181 caregivers of cancer patients who had died at home in the U.K., only 112 (62%) had received the information that they needed regarding the patient's illness. Similarly, Merrouche et al.15 reported that approximately 40% of family members were dissatisfied with the information they received concerning terminally ill cancer patients.
The needs of caregivers are particularly important in PC. First, families often serve as the primary caregivers and are the major source of support to the dying person. Promoting the caregiver's needs may have a positive impact on the patient's quality of life. Second, from a community health perspective, the caregiver's experience of caring for the dying patient may have consequences for their subsequent bereavement.16 This in turn can affect the health and well-being of the caregiver.16, 17
The issue of caregiver protectiveness regarding the provision of information to the patient has been documented previously.18 Although the majority of patient participants in the current study agreed that it was important for their family to receive information about their illness, only one patient approved of their family influencing the information that the patient was given regarding prognosis. This finding is similar to that noted in the previous literature.5 In a study by Noone et al.19 comparing the attitudes of elderly patients and their relatives toward telling the truth about cancer, 83% of patients wanted to be told the truth. However, only 55% of matched relatives wanted the patient to be informed. Therefore, patient information preferences cannot be predicted accurately by talking to relatives. Unfortunately, to our knowledge, literature from culturally diverse populations is limited.7, 8
The dilemma of how to respond to a family's request to withhold information from a patient has been identified frequently in both the medical and nursing literature.20–25 To our knowledge, there have been very few empiric studies performed to date in culturally diverse populations. HP participants in the current study, many of whom worked in multicultural parts of Australia, reported this to be a frequent and challenging occurrence. Likewise, Anderlik et al.20 surveyed 122 physicians from a major cancer center in the U.S. and found that 57% had received at least 1 family request to withhold information concerning prognosis from a patient during the preceding 12-month period. HP participants in the current study had various suggestions for how to handle this scenario. All said they would explain to the families that they prefer or felt obligated to answer direct patient questions honestly, but varied with regard to how much they tried to facilitate an open discussion with the patient. Suggestions by HP participants included clarifying the concerns of the caregiver and how much they wanted the patient to know, explaining the advantages of being open with the patient and the costs of the patient not being informed, and then negotiating what is actually discussed. Some HPs said they would reassure families that they would not raise the topic with the patient. It is interesting to note that none of the HPs said they would actively explore the patients' understanding of their illness and inquire about their preferences for information in this situation unless either the family consented or there was a pressing need to do so.
The reasons why HP participants were reluctant to actively explore the preferences of the patients in this situation are not clear. Perhaps they were fearful of upsetting the family and alienating them from PC. Conversely, many of the HP participants expressed a desire to be culturally sensitive and to respect that the patient and their family may have different views with regard to truth telling and patient autonomy. Both the caregiver and HP participants highlighted difficulties with using professional interpreters, another factor that contributes to the complexity of this situation. The issue of the interpreter themselves restricting the patient's access to information, as raised by one caregiver in the current study, warrants further investigation.
Various approaches have been proposed regarding the situation of caregivers trying to restrict a patient's access to information. Anderlik et al.20 reported that 4% of cancer specialists surveyed “always” abided a family's request to withhold prognostic information from a patient, 25% did so “most of the time,” and 43% did so only “occasionally.” Although to our knowledge no other empiric studies exist, various authors have offered recommendations. Maguire et al.22 suggested the following steps for when a family member is trying to withhold the truth from the patient. First, speak with the relative and acknowledge their request; then explore and validate the reasons for it and establish the emotional cost of the patient not being informed. Next, enter into a contract with the relative that you will not tell the patient but will explore their understanding by speaking with them separately. Finally, establish the patient's level of awareness by asking a directive question and exploring the cues given; if the patient is obviously aware of their condition, then confirm this and seek permission to convey this to the family. More recently, Maguire and Piceathly26 suggested a joint meeting with the patient and the family to facilitate a greater understanding of the situation and to discuss the current concerns of both rather than holding a separate meeting with the patient. Maguire and Piceathly26 also recommended reassuring caregivers that if it does not appear that the patient wants to know his prognosis, it will not be thrust on him. In contrast, Freedman23 recommended finding out from the patient what they want to know and offering to tell them the truth at whatever level of detail they desire. Likewise, Taboada and Bruera21 suggested sensitively exploring and respecting the preferences of the patient.
Limitations and applicability of findings
Qualitative methodology dictates small sample sizes. The use of qualitative methods such as those used in the current study is common in exploratory studies and can generate hypotheses and provide rich descriptive information regarding a phenomenon. However, it is difficult to make assumptions concerning the generalizability of the data obtained using such methodology.
The sample in the current study is limited to English-speaking patients and caregivers (some of the caregivers were caring for patients from non-English-speaking backgrounds) from three different PC services in an urban setting in Sydney in which the patient had an underlying illness of advanced cancer. The patient and caregiver participants therefore may not be representative of Australia's culturally diverse population. The educational background of the caregiver group was higher than that of the general population. All patients and caregivers had been referred to a PC service, were willing to receive ongoing follow-up from the PC team, and had been in contact with the PC service for a relatively long time (median, 12–14 weeks; range, 2 weeks to 2.5 years). Therefore, participants may have been more accepting of a palliative approach to their illness and therefore held different views with regard to discussing prognosis and EOL issues than those patients with incurable cancer outside a PC setting. We obtained each patient's and caregiver's views on only one occasion. It is likely that the views of patients and caregivers views regarding discussing prognosis and EOL issues evolved over time.
The HP participants came from various disciplines and from several different PC centers in Australia servicing culturally diverse populations in mainly urban settings. However, the views of PC HPs may differ from those providers caring for terminal patients in other settings.
Overall, the findings of the current study highlight the importance of checking the individual needs of both the patients and caregivers for information concerning prognosis and EOL issues, because they are often different. The value of having separate as well as joint discussions with the patient and caregiver about these issues was identified.
HP participants had useful suggestions for how to handle the situation of a family request to avoid discussions concerning prognosis and EOL issues with patients, most commonly those from non–English-speaking backgrounds. Training in formal communication skills may enhance the confidence of the HPs in sensitively eliciting patient preferences for information and decisionmaking in this challenging situation, including giving the patient the option of disclosure and decision-making negotiated through the family.
The authors thank all the patient, caregiver, and health professional participants for giving their time and energy to this study, and to the staff of the involved palliative care services who assisted with patient identification. They also thank Professor Robert Arnold from the University of Pittsburgh for contributing helpful comments to an earlier version of the article.
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