How to tell patients they’re likely to die
Health care professionals often have difficulty facilitating hope and coping strategies when managing end-of-life issues. Advising a limited life expectancy has an obvious impact on the patients, caregivers and their networks ability to remain optimistic.
To overcome this health care professionals can offer to answer questions, discuss promising new treatments, treat the patient as a “whole person”, discuss the limitations of end-of-life estimates, present information about palliative care and advice on other alternative treatments. Often this information will need to be staggered to avoid overwhelming the patient.
If a patient’s health is deteriorating a time will come in which discussing death and dying becomes important. In the terminal phase the patient and their caregivers may hold unnecessary or misplaced misconceptions about the process of dying. This discussion can do much to alleviate anxiety.
Patients’ information needs differ with context, prognostic stage and distribution rates. Though most patients will prefer being kept highly informed and appraised of treatment options this need will differ in relation to the context of their own health and their stage in the prognostic cycle. Further, whilst some patients may prefer an “all-at-once” approach to information, others will prefer it to be dispersed across a series of touch points in a more “piecemeal” approach.
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.
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.
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:
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Systematic literature review of the best available evidence on discussion of prognosis and end-of-life issues;
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Review of previous relevant guidelines and expert opinions in the literature; and
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The key recommendations of these guidelines are for health professionals to consider the recommendations conveyed by the acronym PREPARED.
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Confirm pathological diagnosis and investigation results before initiating discussion.
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Try to ensure privacy and uninterrupted time for discussion.
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Negotiate who should be present during the discussion.
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Develop rapport.
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Show empathy, care and compassion during the entire consultation.
Elicit patient and caregiver preferences:
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Identify the reason for this consultation and elicit the patient’s expectations.
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Clarify the patient’s or caregiver’s understanding of their situation, and establish how much detail and what they want to know.
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Consider cultural and contextual factors influencing information preferences.
Provide information, tailored to the individual needs of both patients and their families:
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Offer to discuss what to expect, in a sensitive manner, giving the patient the option not to discuss it.
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Pace information to the patient’s information preferences, understanding and circumstances.
- Use clear, jargon-free, understandable language.
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Explain the uncertainty, limitations and unreliability of prognostic and end-of-life information.
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Avoid being too exact with time frames unless in the last few days.
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Consider the caregiver’s distinct information needs, which may require a separate meeting with the caregiver (provided the patient, if mentally competent, gives consent).
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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:
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Explore and acknowledge the patient’s and caregiver’s fears and concerns and their emotional reaction to the discussion.
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Respond to the patient’s or caregiver’s distress regarding the discussion, where applicable.
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Be honest without being blunt or giving more detailed information than desired by the patient.
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Do not give misleading or false information to try to positively influence a patient’s hope.
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Reassure that support, treatments and resources are available to control pain and other symptoms, but avoid premature reassurance.
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Explore and facilitate realistic goals and wishes, and ways of coping on a day-to-day basis, where appropriate.
Encourage questions and further discussions:
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Encourage questions and information clarification; be prepared to repeat explanations.
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Check understanding of what has been discussed and if the information provided meets the patient’s and caregiver’s needs.
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Leave the door open for topics to be discussed again in the future.
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Write a summary of what has been discussed in the medical record.
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Speak or write to other key health care providers involved in the patient’s care. As a minimum, this should include the patient’s general practitioner