Contributors
Summary
Guideline development and use
Methods of guideline development
Literature review
Expert advisory panel
Target audience
How to use the guidelines
Grading of recommendations
Limitations of the guidelines
The guidelines
Timing of prognostic and end-of-life discussions
Preparation for the discussion
Physical and social setting
How to discuss prognosis and end-of-life issues
General strategies to facilitate hope and coping when discussing prognosis and end-of-life issues
Additional background information about specific content areas and issues
Role of self-care
Endorsing organisations
References
Contributors
Writing committee
Dr Josephine M Clayton (Chair) — Head of Department of Palliative Care, Royal North Shore Hospital, Sydney, NSW; Senior Lecturer and Cancer Institute NSW Research Fellow, Faculty of Medicine, University of Sydney, Sydney, NSW.
Dr Karen M Hancock — Project Coordinator and Research Associate, Medical Psychology Research Unit, University of Sydney, Sydney, NSW.
Professor Phyllis N Butow — Professor of Psychology, University of Sydney, Sydney, NSW.
Professor Martin H N Tattersall — Professor of Cancer Medicine, University of Sydney, Sydney, NSW.
Professor David C Currow — Professor of Palliative and Supportive Care, Flinders University, Adelaide, SA.
Correspondence: jclaytonATmed.usyd.edu.au
Australian and New Zealand Expert Advisory Group
| Dr Jonathan Adler, Palliative Care Physician | Professor Sanchia Aranda, Cancer Nursing |
| Dr Kirsten Auret, Palliative Care Physician | Dr Fran Boyle, Medical Oncologist |
| Dr Annette Britton, Geriatrician | Associate Professor Richard Chye, Palliative Care Physician |
| Dr Katy Clark, Palliative Care Physician | Associate Professor Patricia Davidson, Cardiac Nursing |
| Dr Jan Maree Davis, Palliative Care Physician | Professor Afaf Girgis, Behavioural Scientist |
| Dr Sara Graham, Carers NSW Representative/Advocate | Professor Janet Hardy, Palliative Care Physician |
| Ms Kate Introna, Palliative Care Nursing | Professor John Kearsley, Radiation Oncologist |
| Professor Ian Kerridge, Ethicist and Haematologist | Professor Linda Kristjanson, Palliative Care Nursing |
| Dr Peter Martin, Palliative Care Physician | Dr Amanda McBride, General Practitioner |
| Ms Anne Meller, Aged Care Nursing | Associate Professor Geoffrey Mitchell, General Practitioner |
| Dr Alison Moore, Linguist | Ms Beverley Noble, Cancer Voices Consumer Representative |
| Professor Ian Olver, Medical Oncologist | Ms Sharon Parker, Nursing, Clinical Trials Research |
| Associate Professor Matthew Peters, Respiratory Physician | Dr Peter Saul, Intensive Care Specialist |
| Associate Professor Cameron Stewart, Lawyer | Ms Lyn Swinburne, Breast Cancer Network Australia Consumer Representative |
| Dr Bernadette Tobin, Ethicist | Ms Kathryn Tuckwell, Linguist |
| Professor Patsy Yates, Palliative Care Nursing |
Prognostic and end-of-life communication is a vital skill for health care professionals caring for patients with progressive life-limiting illnesses, and their families. Expert opinion varies, and high-quality evidence on how best to discuss these issues with such patients and their caregivers is limited. These guidelines were developed to address these issues. The guidelines were developed through the following methods:
Systematic literature review of the best available evidence on discussion of prognosis and end-of-life issues;
Review of previous relevant guidelines and expert opinions in the literature; and
Refining of draft guidelines by an expert advisory panel.
The key recommendations of these guidelines are for health professionals to consider the recommendations conveyed by the acronym PREPARED.
Prepare for the discussion, where possible:
Confirm pathological diagnosis and investigation results before initiating discussion.
Try to ensure privacy and uninterrupted time for discussion.
Negotiate who should be present during the discussion.
Elicit patient and caregiver preferences:
Identify the reason for this consultation and elicit the patient’s expectations.
Clarify the patient’s or caregiver’s understanding of their situation, and establish how much detail and what they want to know.
Consider cultural and contextual factors influencing information preferences.
Provide information, tailored to the individual needs of both patients and their families:
Offer to discuss what to expect, in a sensitive manner, giving the patient the option not to discuss it.
Pace information to the patient’s information preferences, understanding and circumstances.
Use clear, jargon-free, understandable language.
Explain the uncertainty, limitations and unreliability of prognostic and end-of-life information.
Avoid being too exact with timeframes unless in the last few days.
Consider the caregiver’s distinct information needs, which may require a separate meeting with the caregiver (provided the patient, if mentally competent, gives consent).
Try to ensure consistency of information and approach provided to different family members and the patient and from different clinical team members.
Acknowledge emotions and concerns:
Explore and acknowledge the patient’s and caregiver’s fears and concerns and their emotional reaction to the discussion.
Respond to the patient’s or caregiver’s distress regarding the discussion, where applicable.
Be honest without being blunt or giving more detailed information than desired by the patient.
Do not give misleading or false information to try to positively influence a patient’s hope.
Reassure that support, treatments and resources are available to control pain and other symptoms, but avoid premature reassurance.
Explore and facilitate realistic goals and wishes, and ways of coping on a day-to-day basis, where appropriate.
Discussing prognosis and end-of-life issues has been identified as an important component of care by patients with progressive life-limiting illnesses, and their families.1,2 Being adequately informed is essential for such patients and their caregivers to participate in decisions about their treatment and care, to set goals and priorities, and to prepare for death. Clinicians need to provide information in a way that assists patients and their families to make appropriate decisions, be informed to the level that they wish, and cope with their situation. These guidelines have been prepared to assist clinicians with this difficult but important task.
The guidelines were developed using the following process:
The systematic review3 was conducted in conjunction with personnel of the systematic review section of the National Health and Medical Research Council (NHMRC) Clinical Trials Centre, in accordance with the principles and processes recommended by the Cochrane Review.4 Eligible studies were those that sampled adult patients who had an advanced progressive life-limiting illness with less than 2 years to live, including but not restricted to cancer, end-stage pulmonary disease, end-stage cardiac failure, and motor neurone disease; and/or the caregivers (including bereaved relatives) of such patients; and qualified health care professionals. More specifically for studies where patients formed the study group, the eligibility criteria included: patients in specialist palliative care or hospice settings (inpatient or community), and patients in any care setting with a diagnosis of an advanced life-limiting illness being treated with palliative intent and with a life expectancy of less than 2 years. Where samples were mixed (ie, potentially curable and advanced disease), studies were included if more than 50% of patients had an advanced life-limiting illness or where the results for such patients were provided separately. Studies where patients formed the study group were excluded if they involved patients with chronic diseases with likely life expectancy of greater than 2 years (such as dementia and multiple sclerosis), patients being treated with curative intent, or patients being cared for in an intensive care unit, or if it was not possible to determine what percentage of the study group was being treated with palliative intent or had a life expectancy of less than 2 years.
The medical literature was searched to identify relevant studies and reviews for the period between 1966 and November 2004. Searches were conducted via MEDLINE, CINAHL, EMBASE, Psycinfo and the Cochrane Register of Controlled trials (Central). Out of 4167 abstracts retrieved by electronic searches, and a further 127 abstracts identified by hand searching, 278 full manuscripts were considered for inclusion in the review. One hundred and fifty-one did not meet the eligibility criteria and four were duplicates; hence, 123 articles were included. Individual reviewers extracted data from each study using a standard format. Data extraction was checked by a second reviewer for 10% of studies to ensure consistency.
Most studies were descriptive, examining provider practices and patient and/or caregiver views, attitudes, knowledge and behaviour (Level IVa evidence according to the NHMRC 1995 ratings5). Such studies are not considered admissible evidence in the more recent NMHRC rating scale.6 These NHMRC rating scales are designed for research questions regarding interventions, diagnosis, aetiology, screening and prognostic factors, but are not readily applicable to the topic of these guidelines.
Relevant consensus guidelines and expert opinion were incorporated into the guidelines because of the lack of evidence for some topics. Consensus guidelines in similar areas were retrieved via hand searching and the search strategy for the systematic review. They were excluded from the systematic review because they were not studies. These guidelines included areas such as breaking bad news (n = 2), psychosocial clinical practice guidelines for women with breast cancer (n = 1), clinical practice guidelines for advanced breast cancer (n = 1), therapeutic guidelines for palliative care (n = 1), advance directives (n = 1) and end-of-life care (n = 1). These guidelines used a rigorous consensus-building process, with many commissioned by the Australian or New South Wales Government and endorsed by national peak bodies. Published expert opinion — the considered opinion of clinical experts (n = 12) regarding communication of prognosis and end-of-life issues with patients, and their families, with advanced life-limiting illnesses — was reviewed and cited for areas where there was a lack of studies or consensus.
An expert panel was convened, comprising 35 Australian and New Zealand health care professionals and consumers (nine palliative care medical specialists, three medical oncologists, three palliative care nurses, three consumers [including two cancer patients and one caregiver], two general practitioners, two psychosocial experts, two ethicists, two linguists, one oncology nurse, one cardiology nurse, one aged care nurse, one research nurse, one geriatrician, one respiratory physician, one radiation oncologist, one intensive care specialist, and one lawyer). The panel members were selected to reflect the multidisciplinary nature of care for patients with advanced progressive life-limiting illnesses. Representatives were selected on the basis of either their clinical expertise or a track record of publications on this topic. Consumer bodies, such as Carers NSW and Cancer Voices NSW, were approached and provided consumer representation. The guidelines were refined with the assistance of this expert panel using consensus methods (modified nominal group technique/Delphi method7).
This group was sent the guidelines by mail and asked to evaluate them (both by rating each individual point using a nominal scale and by providing suggested word changes and comments following critical review). The group then had a face-to-face meeting and discussed discrepancies of opinion and all items rated by at least 10% of the panel to be either “not important” or “somewhat important” (a score of 1 or 2 on a five-point scale where 3 was “important” and 5 was “essential”). Following the meeting, the research team refined the guidelines based on the recommendations of the expert panel. The final draft was sent again to the expert panel for a further round of feedback and final approval.
These guidelines were developed for use by all members of the health care team involved in the care of patients with progressive life-limiting illnesses, and their families, including GPs, specialist doctors and trainees (including palliative care, medical and radiation oncology, surgical oncology, geriatrics, haematology, respiratory medicine, cardiology, and neurology), junior medical staff, nurses, social workers, psychologists, psychiatrists, physiotherapists and occupational therapists. Some health care professionals (such as junior medical staff, generalist nurses and some allied health staff) may not feel it is their role to be giving detailed prognostic or end-of-life information to patients. However, the general principles in these guidelines are relevant for all health care professionals interacting with this patient population and their families at home or in hospital.
Discussions about prognosis and end-of-life issues can be conceptualised as a process of ongoing conversation over time, rather than a single discussion.8 Hence, the material in these guidelines is best covered with patients and caregivers over multiple consultations, depending on the clinical circumstances and information needs of the patient and caregivers. The response of patients and their caregivers will dictate the pace and volume of material to be discussed. Some of the issues (eg, likely symptoms and how they are treated, what will happen close to death) will be covered in different ways, or not at all, in the initial conversation compared with when the symptoms start appearing or accelerating. In the first instance, they can be discussed in general terms, and later in specific terms. It is important to give the patient and family an opportunity to have their information needs met regarding these topics, but at the same time to prevent overloading the patient and caregiver both informationally and emotionally.
The guidelines assume a relatively high level of knowledge, generic communication skills, and judgement. Maximum benefit in applying the guidelines by trainees or junior health care professionals may be facilitated by attending a basic communications skills workshop.9
Background information regarding some recommendations in the guidelines is given in the text. The recommendations themselves are presented in Boxes 1 to 16. Boxes 1 to 5 are relevant to all discussions of prognosis and end-of-life issues, and address the following topics: timing of the discussion, preparation for the discussion, physical and social setting, how to discuss prognosis and end-of-life issues, and general strategies to facilitate hope and coping. Boxes 6 to 16 are specific to certain content areas or issues. Useful phrases are given where applicable. It is suggested that you choose a phrase that fits your style and with which you feel comfortable. Some of the phrases can be adapted for your own use.
The recommendations detailed in Boxes 1 to 16 are graded as follows:
DS = descriptive study or studies;
CG = existing consensus guidelines;
EO = published expert opinion; and
RGP = recommended good practice based on the clinical and consumer consensus opinion of the expert advisory group and chief investigators.
The systematic literature review which informed these guidelines was limited to studies of patients, and/or their caregivers, with a known progressive life-limiting illness. The recommendations or suggested phrases may not be applicable to patients with debilitating chronic illnesses with a life expectancy of more than 2 years, patients having treatment with curative intent, and those in whom intensive care treatment would still have a reasonable chance of being effective. Likewise, end-of-life discussions with well elderly people, those in aged care facilities with uncertain disease trajectories, and patients in the early stages of dementia are beyond the scope of these guidelines.
All the articles included in the systematic review were written in English, and most of the patient and caregiver participants were from Anglo-Saxon backgrounds. Hence, some caution is required when interpreting these guidelines for patients from non-Anglo-Saxon backgrounds.
Discussing prognosis and end-of-life issues is difficult. Research has identified deficiencies in communication between health care professionals and patients regarding prognosis and end-of-life issues.10 Many health care professionals are uncomfortable discussing these topics.11,12 Reasons include perceived lack of training, stress, no time to attend to the patient’s emotional needs, fear of upsetting the patient, and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment.13-17 Such avoidance can lead to poorer patient satisfaction and psychological morbidity.18,19 If information provision is not honest and detailed, patients may perceive that health care professionals are withholding potentially frightening information.20,21 When cancer patients are not adequately informed of their prognosis, they are more likely to choose aggressive anticancer treatments22 and make decisions that they later regret.23 Therefore, it is in the patient’s best interests to offer such information rather than withhold it in an attempt to protect the patient from losing hope or being upset. Although many health care professionals believe introducing the topic will unnecessarily upset the patient and dispel any hope, evidence suggests that patients can engage in such discussions with minimal stress24 and maintain a sense of hope even when the prognosis is poor.8 In addition, awareness of prognosis is associated with greater satisfaction with care and lower depression levels in patients.18,19
Most patients from Western countries prefer some information regarding prognosis when first diagnosed with a life-limiting illness.25,30,31 However, this information can be difficult to comprehend at this time,32 and one study indicated that patients found the information distressing if they had not asked for it.25 In one study, most palliative care patient and caregiver participants felt that it was appropriate and important for the doctor or nurse to make this an accessible topic, because they may find it difficult to raise it themselves.15 Box 1 gives recommendations for when the health care professional should consider raising the topic, apart from when the patient initiates the discussion (eg, by asking a question).
If the consultation is planned, it is important to provide consistent, accurate information by reading clinical records, speaking with health care professionals, and researching the literature to obtain up-to-date knowledge.17,28,33-35 It is helpful for health care professionals to be aware of their own feelings of grief, anxiety or guilt (including fears about holding the discussion), particularly if they have known the patient for some time. These are normal responses, and self-acknowledgement may avoid projecting feelings or biases onto the patient or caregiver.36
Good interaction between the patient and health care professional is fundamental to effective communication,43 and patients facing a progressive life-limiting illness place great emphasis on the relationship with their health care professional.2 Most patients prefer the information to come from a confident expert (ie, not delegated to the most junior person on the team).1,25,37-40,44 While having a long-term relationship is important for many patients in discussing prognostic and end-of-life issues, even the first consultation may be a time when some issues can be comfortably explored.15,35,38,45
Although it may be beneficial to provide support and ensure continuity of care by having another health care professional present,37,44,46 some patients are not in favour of this approach.31 Some research suggests that some patients wish to receive information from a different health care professional or another person (eg, priest),15 indicating that the health care professional needs to negotiate who delivers the information. Most but not all patients want to have a family member or friend with them.25,34,35 This should be ascertained.
Trust can be built by using an empathic, patient-centred style.41 Good generic communication skills involve using eye contact (if culturally appropriate); using appropriate body language such as an open posture; sitting close to the patient; active listening such as nodding or making noises of agreement or encouragement to indicate understanding; reflecting empathically; and showing compassion by using a warm, caring, and respectful manner.1,2,25,37,39,44,47,49 An empathic, patient-centred style also involves using open-ended questions with an emotional content. This approach has been shown to elicit greater expression of feelings compared with the use of closed questions.71 These open-ended questions can be asked before discussing prognosis, palliative care or end-of-life issues so that the patient’s concerns, goals and values can be determined.72 It can also help create an atmosphere where the patient is treated as a “whole person” (as well as the family) and feels that the health care professional is interested in and sensitive to their problems and feelings.73
Establishing the patient’s and caregiver’s understanding of the situation helps establish a common ground from which to start the discussion.74 In initial consultations, the health care professional could elicit patient understanding when obtaining the patient’s illness history (eg, by allowing them to tell their story and asking focussed or open-directive questions to clarify certain points).73 When the patient is well known to the health care professional, it may be more appropriate to consider summarising what has happened with their illness so far, before moving on to the current situation and clarifying the patient’s understanding.
There is evidence that doctors are not good at predicting patients’ information preferences, and tend to underestimate patients’ need for information.75-77 Doctors frequently perceive that the patient has a greater awareness or understanding than the patient reports.22,77-81 Patients with cancer and other life-limiting illnesses frequently have misunderstandings about their illness, prognosis and goals of treatment.22,77,79,80 Some of the reasons may be to do with patients’ tendencies to forget 40%–50% of the information given to them by doctors;82 they may find it difficult to absorb information if they are distressed; they may not understand the language or jargon used, particularly if the information is not communicated clearly;83,84 and they may deny or subconsciously block-out information that they find unacceptable80,85 as a way of coping with their illness.86 Additionally, doctors may withhold information, particularly if there are family requests for information to be imparted through the family rather than doctor to patient, as is the case in some cultures.55,57
Many studies suggest that most patients (at least from Western countries) have high information needs concerning prognosis and life expectancy;2,15,25,31,39,60,87-90 however, a sizable minority do not want full disclosure.31 Many patients and caregivers want information about the likely illness trajectory, treatment options and what they may accomplish, life expectancy, likely future symptoms, and what to expect around the time of death.8,25,60,61,88,90-93 However, patients may experience conflict between wanting to know and fearing bad news.61
Although most patients have high information needs, the different types of prognostic and end-of-life information may be preferred over a series of consultations or at different times, depending on the context and the patient’s stage of illness.26 Evidence suggests that patients may want less prognostic detail about their illness as they become sicker, while caregivers may want more information, especially as death approaches.25,52 Younger and more educated patients may want more detailed information.28,31,49,87,94 Some patients may never want some types of information. For example, while most patients in Western cultures want to be informed that their lifespan will be limited by their illness, some patients do not want to be given the likely timeframe.1,26,42,61,95 Patients from some cultural backgrounds may prefer non-disclosure, or disclosure negotiated through the family, when life expectancy is short.55,57
It is not possible to make assumptions about individuals’ information needs based on their demographic characteristics or cultural background. It is important to tailor information to individual needs, as preferences for the amount, type and timing of information vary.
Many health care professionals have difficulty in disclosing a limited life expectancy while maintaining the patient’s hope, yet patients, caregivers and health care professionals have identified hope as an integral component of prognostic and end-of-life discussions.2,25,42,60,61,63,97,98 These studies also emphasise the importance of balancing honesty with hope and empathy. There are different views of what constitutes an honest approach. Some studies of patients with advanced illness have found that accurate information is equated with honesty, but it was important that this was not combined with bluntness or too much hard factual or detailed information.42,98 Others have defined honesty as a straightforward or direct approach.2,25
Several studies have addressed the construct of hope within the end-of-life context. Hope can take a variety of forms, ranging from the hope of a miracle cure to the hope of a peaceful death, and patients may simultaneously hope for a cure as well as acknowledge the terminal nature of the illness. Some patients may avoid enquiring about progress or symptoms in order to maintain hope for the future.42,91 Patients have reported obtaining a sense of hope from relationships, beliefs and faith, maintaining dignity, finding inner peace, thinking about meaningful events in their lives, having symptom control and reassurance that pain will be controlled, and enjoying a sense of humour, including occasional humour from the health care professional.31,60 In addition, studies have found that hope can be maintained by having a health care professional who is knowledgeable and offers to answer all of the patient’s questions, offers hope for new developments in treatment, treats the patient as a “whole person”, acknowledges difficulties in giving prognostic estimates, presents information about palliative care at a rate that the patient can assimilate, and respects alternative treatments.25,31,99,100
In the setting of an advanced progressive life-limiting illness, the main goals of disease-specific treatments are to improve the length and quality of life. It is important that the patient understands that cure is not a treatment goal, but that there may be treatments that can slow the progression of the disease or provide symptom relief. Discussion should be informed and focus on the balance between the potential effectiveness of treatments on prolonging life versus the side effects. It is important that the patient has the opportunity to be involved in the decision-making process, according to their desired level of involvement.46
When patients hear news of lack of treatment response, clinicians should be prepared for a wide range of emotions such as sadness, anger or despair.109 It is important that such news be given in an empathic way, and the continued availability of supportive and symptomatic care is emphasised.
The World Health Organization defines palliative care as:
an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.112
A “palliative approach” is an approach to care used by primary health care services and providers in accordance with the definition of palliative care outlined above.113 “Specialist palliative care services” refers to multidisciplinary health care services whose “substantive work is with patients who have a life limiting progressive illness”.110 Specialist palliative care services are not available in all parts of Australia, especially in rural areas. In addition, not all patients with advanced progressive life-limiting illnesses require specialist palliative care services — some may be cared for most appropriately by their primary care providers.113 For patients with more complex palliative care needs (eg, those requiring specialist assessment or ongoing input for management of physical, psychological, spiritual or social issues), referral to specialist palliative care services, where available, is appropriate at any time from the first diagnosis of a progressive life-limiting illness. Patients may only need to see a specialist palliative care service initially for a limited time to assist in the management of a particular problem, such as uncontrolled pain. As the patient’s illness progresses, he or she may need referral to community palliative care services or to an inpatient palliative care unit for terminal care.
In comparison to conventional care, specialist palliative care services improve patient and caregiver satisfaction, provide better pain and symptom control, reduce caregiver anxiety, and increase the likelihood of the patient being cared for during the terminal phase in their place of choice.114 However, referral to specialist palliative care services may evoke fears of impending death, helplessness and abandonment in the patient if this is not communicated sensitively and effectively by the health care team.
Various approaches to phrasing life expectancy have been reported in the context of an advanced progressive life-limiting illness: days versus weeks versus months, likelihood of being alive for certain events, rough range, and probabilistic (eg, 10% and 50% survival). However, whether one approach is superior to others has not been examined. Consistent findings in the literature are that it is important to avoid being exact with timeframes unless in the final days of life, and to explain the unreliability of making survival predictions. However, research has found that patients may prefer being asked if they would like a rough idea of their life expectancy.15,42 Two studies have found that patients may prefer words or numbers to explain the prognosis instead of descriptive tools such as pie charts and graphs.26,35
The possibility of uncontrolled pain in the future concerns many people, so it is important to offer reassurance that pain can be controlled in the vast majority.8,25,49,61
It is not clear whether it is appropriate for the health care professional to discuss uncommon but potentially problematic symptoms (eg, seizures and suffocation, or bleeding) and what to do should these occur.8,20,26,53,88,101 The benefits (of forewarning a patient or caregiver and having procedures in place) versus the potential harm (of worrying the patient or caregiver to a point of unnecessary distress about the possibility of the situation, albeit unlikely, occurring) need to be considered. Caregivers may need more specific information than the patient about how to care for the patient as the illness progresses25,53,119 and how to get help when complications arise at home.
Advance care planning refers to discussion of treatment decisions and choices and goals of care at the end of life, and the patient’s wishes for medical care in the future if they are no longer able to be involved in the discussion. The possible benefits of advance care planning are that it may help patients ensure that, when they are no longer able to make decisions for themselves, they receive the kind of treatment and care they would prefer. In addition, advance care planning may relieve the burden of decision making for caregivers, and facilitate open communication between patients and caregivers.120,125,129
An advance directive is a statement (either made orally or in writing) by a person that outlines their wishes for future health and personal care. The directive generally becomes effective when the person is unable to make his or her own decisions. Advance directives130 are legally binding in Australia, either at common law or under statutes. The Australian Capital Territory, Northern Territory, Queensland, South Australia and Victoria have statutory schemes for advance directives. In the other states, the law of advance directives is governed by common law. Although the evidence suggests that people are willing to write such documents,131 they may have little effect on treatment decisions, including decisions to resuscitate.132-134
In some jurisdictions, a person can make an enduring medical power of attorney, or appoint someone as an enduring guardian, whereby a family member or other trusted person is appointed to make health decisions on the person’s behalf should the person lose the mental capacity to make his or her own decisions. Even in the absence of such an appointment, all Australian jurisdictions have guardianship arrangements that recognise the authority of people close to the patient to make medical treatment decisions on that person’s behalf in the event of lack of decision-making capacity. Including these substitute decisionmakers in discussions has been shown to improve the effectiveness of advance care planning.135,136
In-depth discussion of advance directives and enduring medical powers of attorney are beyond the scope of these guidelines. The status of advance directives and the status and responsibilities of representatives of incompetent patients is complex and varies from jurisdiction to jurisdiction. Legal advice may need to be sought.
It is important for health care providers to ensure that cardiopulmonary resuscitation (CPR) is not attempted inappropriately in someone who is dying an expected death, by documenting “do not attempt CPR” in the medical records.122,128,137,138 If ambulance transfers are being arranged, paramedics will also need to be informed in the manner required by the local ambulance service (check local policies and procedures).
There is considerable debate about the appropriateness of discussing CPR orders with dying patients. Some guidelines recommend that CPR should always be discussed with the patient (or family if the patient is incompetent).146 Other guidelines state that there is no ethical obligation either to perform or to discuss CPR when it is judged to be clinically futile.144,147 There is no common law requirement in Australia to attempt treatment, even life-prolonging treatment, which is judged to be of insufficient therapeutic benefit (“clinically futile”) or is overly burdensome.44,127,148,149 However, the use of the terms “clinical futility” and “medical futility” is also controversial, as it has been argued that such terms are not capable of objective definition and may give rise to disputes between the treatment team and the patient’s family.150 There is little research evidence to guide policies about whether it is desirable to discuss “no CPR” orders with dying patients before documentation. One Australian study of patients with cancer provides support from the patient’s viewpoint that CPR is not preferable when death is imminent and inevitable.151 Another study found that some patients prefer to defer the timing of the decision to the doctor and do not wish to discuss the topic.152
Decisions about whether to offer or provide CPR should be made on an individual basis on the grounds of likely benefit versus likely burden. Nevertheless, in situations where it is clear that the patient is dying from a far-advanced progressive life-limiting illness and the clinician has decided that CPR is not to be performed on the basis of clinical futility (ie, negligible chance of survival with or without CPR and burdens of CPR far outweigh the benefits), then it should not be presented to patients or their caregivers as if it were an appropriate treatment option.153 This does not mean that it should not be discussed (such discussions may still be an important part of terminal care), but mostly in these circumstances patients and families should not be asked to make a decision regarding CPR.
Specific discussions about CPR are recommended before documenting “no CPR” orders in the following circumstances:
when the illness trajectory is uncertain (ie, CPR may not be clinically futile, for example a patient at an earlier stage of their illness or if a potentially reversible complication of treatment occurs);
in response to a patient or caregiver request or question about CPR; and
when the patient has made it clear that he or she wishes to be informed of all decisions made about their medical care.
There are other circumstances where the responsible clinician may decide that it is not appropriate to have a specific discussion about CPR with a dying patient or the family, before documenting a “no CPR’ order in the medical record, including:
the patient is aware that he or she is dying and has already expressed a wish for care that is aimed at comfort rather than prolonging life;
the patient prefers not to discuss end-of-life care and requests that the doctor or caregiver make any decisions relating to his or her health care; and
the patient is clearly in the terminal phase of a progressive life-limiting illness and the doctor thinks that the harm of the discussion may outweigh the benefits.154,155
However, not discussing “no CPR” orders with patients or caregivers in this latter circumstance may be open to contest and requires very careful consideration. Specific recommendations about whether to discuss CPR before documenting “no CPR” orders in such circumstances are beyond the scope of these guidelines. Health care professionals should refer to relevant professional and institutional codes of ethics and policies, and to relevant judgments and statutory law, for advice on this matter.
Box 12 gives recommendations for communication about CPR should the clinician decide that such a discussion is appropriate. If discussing CPR, it is important to check that patients are aware of the poor success rate of CPR in patients with their condition. When patients and families are made aware of the facts, they are less likely to request CPR.156
When it is judged inappropriate to discuss “no CPR” orders with a particular patient or the family, the reason it has not been specifically discussed should be documented in the patient’s medical records.153
Once the patient is approaching the terminal phase of the illness, or earlier depending on the patient’s or caregiver’s information need, it is important to explore specific issues related to the process of death and dying, as many patients and caregivers hold misconceptions about what is likely to happen, and may hold unnecessary fears.1,8 Some studies show that patients and caregivers may have differing information needs as the patient’s illness progresses.8,25,53 Caregivers may prefer more detailed information about the dying process, potential complications and immediate post-death arrangements than patients.8,25,53
The information preferences and autonomy of the patient are paramount, yet it is vital to include family members in discussions surrounding the transition from curative to palliative care.163 The difficulty of negotiating the concerns of family members while also respecting the patient’s wellbeing and autonomy adds complexity to the task of discussing prognosis and end-of-life issues in a palliative care setting. There is also the potential complicating factor of requests by family members (often a culturally related issue, as discussed above) to withhold information from the patient. Various approaches have been reported in studies of mainly health care professionals’ views and in the empirical literature regarding these issues. No studies have been conducted to evaluate benefits of one approach over another. As for all issues, it is important to make repeated efforts to help family members understand the patient’s condition.145 These guidelines present various ways of addressing these issues based on research, expert opinion and other guidelines. A combination of approaches, or different approaches depending on the circumstances, may be appropriate.
It is important to address conflict rather than avoid it, so that patients and families have the opportunity to share in decision making and be satisfied with care. As for all sections in these guidelines, the use of empathy is important in helping patients and family members feel respected and understood. Research shows that patients who feel understood and listened to are more prepared to accept their doctor’s recommendation.164
In the context of palliative care, denial may be defined as “an unconscious mechanism aimed at negating a disease-oriented threat to the integrity of personhood and daily life”.165 It may involve avoidance of reality. The use of denial by patients is not always counterproductive to their wellbeing. It can reduce psychological distress and help them absorb the consequences of life-threatening information in a manageable and self-determined timeframe.165 It is not problematic if it does not affect the patient’s ability and desire to seek and accept help.165 However, patients or family members may request medically futile treatments because of refusal to accept the diagnosis or prognosis of a life-limiting illness. Such treatments may have side effects that interfere with quality of life and the completion of unfinished business when time is limited. In this case, denial is a problem that the health care professional should address.
Patient requests for medically futile treatments may represent denial or a lack of prognostic understanding. It is important to determine the reason for the request before giving new information.
At the end of the discussion, it is important to reflect on how the discussion went and how it could be improved next time, as well as recognising the emotional impact of the discussion on oneself and the need for self-care. Discussing prognosis and end-of-life issues in patients with advanced life-limiting illnesses is not easy. Eliciting patients’ and caregivers’ emotional concerns and responding empathically involves giving of oneself emotionally, and can take its toll. Not only do health care professionals have to deal with the patient’s emotions and concerns, but potentially their own feelings of failure, helplessness and frustration arising from advancing illness, which may be compounded by stresses in their private lives.166,167 If health care professionals are to be encouraged to discuss prognosis and end-of-life issues with people who have advanced life-limiting illnesses, it is important to acknowledge the need for support and self-care of the health care professionals. Such support includes debriefing with colleagues, encouraging the development of strong collaborative team relationships, and providing communication skills training.74
1 Timing of discussion
2 Preparation for the discussion
3 Physical and social setting
“Some people like to bring someone who is close to them to the appointment.” “Is there anyone else you would like to be here with you while we talk?” “If there are things that you might prefer to discuss with me alone I’d be happy to organise that.” |
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If planning a discussion: “Are you comfortable having another member of my team present when we discuss your results?” |
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“I would be very happy to discuss . . . with you. We won’t have enough time today to address that properly. Is it all right if I come back [state when]?” |
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4 How to discuss prognosis and end-of-life issues
“This has been a tough time for you and your family, and you have faced the challenges of this illness with great courage.” |
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“Do you have any questions or other concerns?” “Some people are worried about things that may or may not happen in the future. It can help to talk about this.” “I am very happy to talk to you about any concerns or questions you have about this now or later. Is there anything you would like to ask me today about this?“ “Often people with conditions like yours have got a lot of questions that are sometimes scary, or sometimes they’re not certain if they want to know the answer. Often the thing they fear or believe is worse than how it really is. So if there’s anything you want to know, feel free to ask me and I’ll answer as best as I can.” |
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“What is your understanding of your health situation and what is likely to happen?” “Do you have thoughts about where things are going with your illness?” |
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“Can you summarise to me what the doctors have explained to you about your illness? Do you think, or did they mention, the illness may affect your health in the future?” |
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“I am very happy to answer that, but do you mind telling me what made you ask that question?” |
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“What worries you most about . . . [eg, what may happen]?” “What frightens you about all of this?” |
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“How much would you like to know?” “Some people like to know everything that is going on with them and what may happen in the future, others prefer not to know too many details. What do you prefer?” “I am happy to give you as much information as I can based on what you want to know.” |
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“It is also important for [name of caregiver] to have the opportunity to find out the things [he/she] needs to know to be able to take care of you. Are you happy for me to speak with [him/her] about your medical condition?” “Is it OK with you if I tell your [relative/caregiver] what I’ve discussed with you?” “Often [daughters/sons] like to ask detailed questions. Is it okay if I answer your [son’s/daughter’s] questions? Is there anything I should not discuss?” “How do you think [patient] is going?” “What concerns do you have at the moment?” “What do you understand is likely to happen to [name of patient]?” “What information will best help you to cope with your caregiving role?” |
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“Can you please help me to understand what I need to know about your beliefs and practices to take the best care of you?”54 “Is there someone else you would like me to involve or speak to?” |
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“Every person is different. I can only tell you what usually happens to people in your situation, not exactly what will happen to you.” “I know that often people expect doctors to know what is going to happen, but in truth we can often only take educated guesses and can often be quite wrong about what the future holds, and especially how long it is. What we can be sure about is . . . and what we don’t know for sure is . . .” |
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“A lot of people find it hard not knowing what will happen next or when. Is this something you find difficult?” |
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“I want to talk about three things today: the test results; what this will mean for you; and the treatment that is possible. And you might have some things to discuss too. Now, the test results . . . Do you have any questions so far?” |
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“Doctors sometimes forget and use words that may not be understood. Please stop me if I am doing this.” |
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“It sounds like this information is different from what you expected, and I think it would be upsetting for anyone.”58 |
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“These are important issues. Would you like to speak to a member of the hospital support staff such as a pastoral caregiver?” “. . . is clearly really important to you. Would it be [useful/helpful] to explore these issues further? Who might be the right person you can do this with?” “Would you like to talk to someone about spiritual matters?” “What are the things in life that give you strength and sustain you?” “Are your beliefs being challenged by your current experiences?” |
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“Have I given you the information you need [at this point/so far]?” “To make sure we are on the same wavelength, I want to check your understanding of what we have discussed.” “Is there anything I’ve said that you’d like me to go over?” “We’ve spoken about an awful lot just now. It might be useful to summarise what we’ve said . . . Is there anything from that that you don’t understand or want me to go over again?” “Do you feel you’ve understood everything that you’ve been told? Is there anything you would like me to go over again? After all, some of this is pretty technical.” |
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“Is there anything else you would like to discuss?” “Is there anything from our previous discussions that you would like to revisit?” “Don’t hesitate to ask me again about any of the issues we have discussed today.” |
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“So, we’ve talked about . . . at length and also talked quickly about . . . Is that your recollection as well?” |
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5 General strategies to facilitate hope and coping during prognostic and end-of-life discussions
“Our team [or whoever applicable] will do our best to support you throughout this illness.” “I [or our team or whoever applicable] will do whatever [I/we] can to assist you in whatever lies ahead for you.” If the patient is no longer able to come for outpatient follow-up: “I will be available to discuss your care with your [GP/community nurse/palliative care team] even if you are not able to come and see me in the clinic.” |
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“We’ve been talking about some treatments that are really not going to be effective now and that we don’t recommend you use. But there are a lot of other things we can still do to help and support you and make sure you are as comfortable as possible.”41 “Although this type of chemotherapy has not been useful, there are other treatments we can use to make you more comfortable.” “The aim of treatment is changing more towards maximising your function and comfort.” “I cannot give you any specific treatment to make this illness go away, but there is a lot we can offer to help you cope with it.” |
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“We have a lot of ways to relieve [pain/nausea/dyspnoea] and other symptoms.” “We will do everything we can to ensure you are as comfortable as possible.” “We cannot promise that you will have no pain. However, we can control almost all of the pain almost all of the time.” |
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“What are your most important [hopes/expectations] about the future?” “As you think about the future and that you may not have a very long time to live, what is most important to you? Are there any aspects of your life that you want to attend to?”51 “Have you any unfinished business?” “What are the things you most want to invest your time and energy in?” “What are the things you want to do in the time you have?” “Is there any particular event that you are looking forward to?” |
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“Some of my patients tell me it helps to try to take one day at a time, and live for the moment as much as possible.” “You will have good days and bad days.” “Many people find that it helps them to cope by trying to maintain some [sense of normality/normal life] or having a routine.” “Be kind to yourself and do the fun things — it doesn’t have to be all about your illness.” |
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“I have no problem with you exploring alternative treatments. They are not my area of expertise. However, if the treatments were a magic bullet, we would be aware and we would also use them. I know they are usually expensive.” “Everything has benefits and burdens. What are you hoping this therapy will achieve?” “You must do whatever you feel is important, but remember that none of these things have been proven to work (or we would be using them) and many are very expensive.” |
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6 Commencing or changing disease-specific treatments
7 Cessation of disease-specific treatments
8 Introducing specialist palliative care services
9 Discussing life expectancy
10 Discussing future symptoms and symptom management
11 Advance care planning
12 “No CPR” orders
13 Discussing the process of death and dying
14 Requests by family members to withhold prognostic or end-of-life information from the patient
15 Dealing with conflicts (eg, differing family opinions, conflicts between doctor and patient or doctor, patient and caregiver)
16 Dealing with denial or expectations that are not consistent with clinical evidence (eg, requests for medically futile treatments)
“What is your understanding of what is likely to happen with your illness and future treatment options?” |
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“While we are hoping that things will go well with treatment . . . or be possible for . . . to occur, if by some chance you didn’t get better, what would be the most important things that you would want or need to do while you are still able to?” “I wish too that this disease would get better. If we cannot make that happen, what other shorter-term things would you like to achieve?” “Have you thought about what might happen if things don’t go as you wish? Sometimes having a plan that prepares you for the worst makes it easier to focus on what you hope for most.”41 “I know you are hoping that the treatment will work well, but I feel it is important to talk about ‘what if’.” |
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“I can see that you really want to get better and I would like that too. Are there ever times when you have darker moments and don’t feel that things are going so well? Can you tell me what is on your mind during those times?” |
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“That would be wonderful if . . . were to occur, wouldn’t it? Are there times when it doesn’t seem so sure? Would you like to talk about that?” |
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“Sometimes it helps to talk these difficult things through with another experienced doctor. Would you like me or your GP to ask for a second opinion?” |
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These recommendations can also be applied to those in Box 6. |
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Endorsing organisations
Australasian Society of HIV Medicine
Australian and New Zealand Society of Palliative Medicine
Australasian Chapter of Palliative Medicine, Royal Australasian College of Physicians
Australian College of Rural and Remote Medicine
Australian General Practice Network
Australian Society of Geriatric Medicine
Cancer Voices Australia
Cardiac Society of Australia and New Zealand
Clinical Oncological Society of Australia
Motor Neurone Disease Association of Australia
Palliative Care Australia
Palliative Care Nurses Australia
Royal Australian College of General Practitioners
Royal College of Nursing, Australia
Thoracic Society of Australia and New Zealand
- Josephine M Clayton
- Karen M Hancock
- Phyllis N Butow
- Martin H N Tattersall
- David C Currow
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