6 STEPS:NEWS & SUPPORT
What is known?
What want to know?
Respond to emotions
Plan and follow up
Clinician self reflection
Families say don’t tell
Hopes and wishes
VIDEO: You have cancer
VIDEO: Treatment fails
|THE DEMO VERSION DOES NOT FEATURE THE DOCCOM ASSESSMENT QUESTIONS NOR THE LEARNING MANAGEMENT SYSTEM|
|Welcome to DocCom Module 33:
"Delivering Bad News"
|by Timothy Quill M.D., Carly Dennis M.D., Anthony Caprio M.D., Catherine Gracey M.D.
|ACCREDITATION AND DISCLOSURE|
|Giving Bad News|
|Timothy Quill, MD |
University of Rochester
Carly Dennis, MD
University of Rochester
Anthony Caprio, MD
Carolinas Healthcare System
Catherine Gracey, MD
University of Rochester
Length: 60 min
|Disclosure|| Dr. Quill has no commercial relationships to disclose. |
Dr. Dennis has no commercial relationships to disclose.
Dr. Caprio has no commercial relationships to disclose.
Dr. Gracey has no commercial relationships to disclose.
Dr. Clark has no relationship to disclose.
Dr. Novack has no relationship to disclose.
Dr. Saizow has no relationship to disclose.
|Commercial Support||None; This project was made possible through the generous support of the Arthur Vining Davis Foundation.|
|Unlabeled Uses||Each faculty person presenting is requested to disclose any product that is not labeled for the use under discussion or that the product is still investigational. There are no off label uses.|
by Timothy Quill, M.D.
|The Patient's View|
|The Doctor's View|
At the conclusion of this module, you will be able to:
|Questions for Reflections:|
“Bad news” is not limited to life-threatening situations. Communicating bad news is an everyday event for clinicians. Balancing the emotional jolt with compassion instead of false hope or vague statements enables patients and families to derive maximum benefit from a trying experience.
Many clinicians find delivering bad news especially challenging when it involves a life-threatening illness. Some clinicians feel uncomfortable with the strong emotions that bad news can elicit both in themselves and their patients. Others feel inadequately prepared or inexperienced, or struggle with their desire to protect the patient and preserve hope, while simultaneously trying to be honest and develop realistic expectations.
Despite these challenges, bad news can be conveyed clearly and compassionately. Effectively breaking bad news can improve the patient’s and family’s ability to plan and cope, encourage realistic goals and autonomy, support the patient emotionally, strengthen the clinician-patient relationship, and foster collaboration among the patient, family, clinicians, and other professionals. For these reasons, effectively delivering bad news involves both conveying information and providing emotional support.
Remembering that whether news is “bad” is determined by the listener, not the giver, is an important facet of empathic communication. Anything that has the potential to change someone’s sense of self or health may be bad news, such as the new diagnosis of hypertension. Clinicians know that such conditions are common and usually easily treated and can easily forget what it means to a patient to hear that he needs to take a medication every day for the rest of his life. Also, the implication of the diagnosis may be very different for a patient if there is a family history of myocardial infarction or stroke.
|COMMUNICATE NEWS AND SUPPORT - A SIX-STEP PROTOCOL|
We outline and detail a six-step communication process that builds on what patients already know and what more they are ready to hear. The process respects the need for honesty and attention to individuals' needs to control the flow of facts and information, as well as to receive emotional support during a painful time.
1. Preparation and Planning
2. What does the patient know?
3. How much does the patient want to know?
4. Sharing the information
5. Provide emotional support
6. Establish a plan and follow up
|Step 1: Preparation and Planning|
Before delivering bad news, prepare yourself, prepare patients and families, choose an appropriate setting and allot time for full discussion.
Prepare yourself. Imagine how your patient might feel and anticipate typical emotional reactions. Acknowledge your own feelings so that interactions are not driven by your sadness, anger, remorse or guilt. Review basic information about the illness and treatment options. Rehearse what you will say. Consider bringing a colleague, perhaps a nurse or social worker, to provide support.
Prepare the patient. When ordering a test or treatment, let the patient (and family) know the possible outcomes, including both benign possibilities and more serious ones. This allows the patient and family to prepare psychologically. They may disclose information about the meaning of a particular diagnosis or concerns about possible outcomes that will help you respond more accurately and compassionately. Determine whom the patient would like to invite as they hear the news. This might include family, surrogate decision makers or members of the interdisciplinary team, such as a nurse, social worker or chaplain.
Choose an appropriate setting. Create an environment conducive to effective communication, usually a quiet, private place with adequate seating. Be sure you are comfortably seated at eye level with the patient. Allot adequate time and avoid interruptions by arranging to hold telephone calls and pages. Patients appreciate evidence that you are giving them your full attention rather than rushing to the next appointment. A box of facial tissues should be handy.
|Step 2: What does the patient know?|
If family members or others you have not met are present, introduce yourself and determine their relationship to the patient.
After initial greetings, have the patient and family tell you what they already know. This provides a basic framework for a patient-centered discussion.
Then establish what the patient and family already know about the patient's health. Pay special attention to the emotional content of their response to your inquiry. A bad news conversation goes better when you can adjust the presentation of the news according to the participant's level of comprehension of the situation and their emotional state.
Questions might include:
Occasionally, a patient will fall silent and seem completely unprepared or unable to respond. To ease the situation and stimulate discussion, gently inquire further about what family and patient understand about the situation and recent tests or interventions. In rare circumstances, it may be better to reschedule the meeting for another time and invite additional support persons.
At times, patients may ask you to stop "beating around the bush" and give them the news. This signifies a readiness to move forward with steps 3 and 4.
|Step 3: How much does the patient want to know?|
Before actually delivering bad news, ask whether the patient is ready for discussion. Asking before telling is respectful and relationship-centered, even though patients may guess that the news is not good based on your tone and facial expression.
Ask a patient about general preferences for the handling of medical information and decision making early in the clinical relationship before significant information needs to be shared (this is ideally done in the pretest counseling period). This will help the clinician to avoid giving too much or too little information.
"If your condition turns out to be serious, do you want to know? If not, whom should we tell?" People handle information differently and each person has the right to voluntarily decline to receive information. A patient may designate someone else to communicate on his or her behalf. Ask the patient and family how they would like to receive information before telling them.
Possible questions include the following:
|Step 4: Sharing the information|
If information is clearly bad, precede it with a "warning shot." This will help to prepare the patient for the bad news they are about to receive ("I don't have good news..."). Share information in small amounts, using unambiguous but not insensitive language, giving patients time to respond to each element you are telling them.
Deliver the information in a sensitive but straightforward manner, using easily understood language. After giving the news, take time to pause and allow the patient (and family) time to digest the information. Avoid delivering all implications of the information in a steady monologue. Provide information in small chunks, pausing frequently to allow silence and time for patient and family to ask questions about each aspect. Do not use technical jargon or euphemisms (i.e. use the word "cancer," not "carcinoma" or "tumor"). Check often for understanding. Use silence and body language as tools to facilitate the discussion and do not minimize the severity of the situation. Well-intentioned efforts to "soften the blow" may lead to vagueness and confusion. Patients appreciate honesty and straightforwardness as long as it is delivered with compassion. Directness does not imply brutality or insensitivity.
You might choose to break bad news by using language like:
|Step 5: Provide emotional support|
Strong emotions usually accompany the reception of bad news. Respond to those patient and family feelings with legitimation and empathy. Reinforce your commitment to work through the process over time by answering questions and responding to feelings and distress.
Responses can be affective (tears, anger, anxiety, fear), cognitive (denial, blame, guilt, disbelief), spiritual (why me?), or even visceral (numbness, disorientation, fight/flight response). You must balance patients' and families' need for information with their need for emotional support. Remember that their responses may be directed at you as the "messenger" of bad news. Taking a patients' or families' anger or sadness personally will not only interfere with their ability to process this information, but also with your ability to maintain a meaningful relationship.
Pause and give the patient and family time to react instead of trying to limit emotion. Balance their shock with compassion. Euphemisms or vague statements might lead to confusion and are may not be perceived as comforting. Be prepared to support them through a broad range of reactions.
Basic communication skills are useful to respond to emotions (DocCom Modules 6 and 13) Use the PEARLS mnemonic:
Avoid saying, ”I understand what you are going through.” No one can truly understand what another person is going through. Remind patients and families that strong emotional responses are normal. Have a box of tissue available. Some patients may express their emotions nonverbally, so be aware of how a patient looks as well as what they say. Some patients may initially “shut down,” perhaps feeling overwhelmed by emotion or by internal reflection about the personal meaning of the news.
Quietly listening and "being with" a patient in distress is a helpful nonverbal expression of caring. Consider touching the patient in an appropriate, reassuring manner.
Allow time for the patient and family to express all of their immediate feelings. Don’t rush them. Once the emotion is fully expressed, most people will be able to move on. A shared understanding of the news and its meaning enhances the clinician-patient relationship and facilitates future decision-making and planning.
Don't be afraid of silence. If you find yourself talking too much and the encounter becomes a monologue, pause and respond to the emotions they have expressed ("You seem overwhelmed...") or count silently to 20 in your head. Stopping or slowing yourself helps patients experience your presence and support at a time when they cannot absorb all the information.
If the early discussion is very emotional, suggest that the patient may have many questions that you will address at a subsequent visit. If the patient's initial response is all intellectual, suggest that they may notice strong emotions when they go home and to call with any concerns.
|Step 6: Establish a plan and follow-up|
Establish plans for the next steps. This may include gathering additional information, performing further tests and telling other family members. Arrange for appropriate referrals and discuss potential sources of emotional and practical support such as, family, friends, social worker, spiritual counselor, professional therapist, hospice or home health agency. Reassure patients and family that you will be actively engaged in an ongoing plan to help. Indicate how patients and family can reach you to answer additional questions. Encourage the patient and their family to keep a list of questions as they arise after the initial discussion. Establish a specific time for a follow-up appointment or phone call.
Assess patients' safety and ensure that they will not be overwhelmed when they leave. Are there medical concerns that need immediate attention? Is a patient able to drive home alone? Is a patient distraught, feeling desperate or suicidal? Is there someone at home to provide support?
Information sharing is the primary goal during an initial conversation. Patients and families may or may not be able to make major medical decisions. You will probably have an opinion about what decisions could or should be made, but it is far more important that you provide support for their decisions (or non-decisions) and maintain a therapeutic relationship. This ensures both that the patient and family feel respected and increases the likelihood that you will be able to provide guidance in the future.
|SOME SPECIFIC SITUATIONS|
Clinicians often experience negative, difficult and conflicting feelings when they disclose bad news. Emotions may include loss of control, a fear of death, guilt or loneliness, and, at times, more complex and less discernible feelings. The scope and intensity of emotion varies with the patient, the disease, past experience and family attitudes. Acknowledge and accept the legitimacy of your own feelings so that you can be fully present and conduct a respectful discussion.
Take time to explore your own reactions to bad news conversations. What did the discussion bring up about your own life and your own family? It may be possible to take time right after a meeting with the patient to do this, or you may have to wait until the workday is finished. Some people find it helpful to discuss their feelings with a trusted colleague; some journal or meditate. If you remove all identifying information, it is permissible and often important to discuss your feelings and reactions with a close family member or friend.
|When families say "don’t tell"|
Most patients eventually want to know their diagnosis and prognosis. Listen carefully to requests to withhold information. Assess whether the request makes sense within the family system, culture or patient values, and respond accordingly..
Clinicians have a legal obligation to obtain informed consent from patients for procedures and for treatments. It is challenging when family members ask the clinician not to tell the patient the diagnosis or other important information, as effective therapeutic relationships generally require a meaningful alliance with families. Ask them why they don’t want you to tell the patient. Inquire about what they are afraid you will say or what their experience has been with bad news rather than saying abruptly, "I have to tell the patient." Inquire whether there is a personal, cultural or religious context for their concern. Offer to talk to the patient together and ask how much information is desired about the situation and what questions there might be.
After discussion with the patient, it may ultimately be decided that details of diagnosis, prognosis and/or treatment will be discussed only with the family. Hiding the diagnosis or important information about prognosis or treatment is neither ethical nor legally acceptable unless the patient has previously indicated that they want no information. These situations may require significant negotiation. In particularly difficult cases, support from the institutional ethics committee or palliative care consultants may be helpful.
|When language is a barrier|
The six-step protocol for communicating bad news can be used when the patient and clinician do not speak the same language. The assistance of an experienced translator who understands medical terminology and is comfortable translating bad news is required. Do not use family members or untrained bilingual people as translators, because this could confuse their roles in the family unit and may violate confidentiality. Also, family members may have personal agendas and responsibilities that lead to miscommunication during translation.
Inform translators about the nature of the discussion before beginning the interview. If they are not experienced medical translators, reassure them their role is only to translate. Verify that they will be comfortable translating the news you are about to give.
Arrange seating in a triangular fashion so that you can face and speak directly to the patient, yet still turn to look at the translator. Speak in short segments, and then give the translator time to convey the information. Verify that the patient and family understand and check for an emotional response.
Patients and family members frequently ask about prognosis. There are many motivations for this request. Some want to have a sense of their future, so they can plan their lives. Others are terrified and hope that you will reassure them that things are not so serious.
Before directly answering questions about prognosis, inquire about reasons for asking. Questions might include:
Consider the implications of prognostic information you provide. Patients who wish to plan their lives may want detailed information, while those who are terrified may do better with more general answers. Specific answers such as “You probably have about six months” are always risky, because they produce disappointment if the time proves to be less and anger or frustration if you have underestimated the patient's lifespan.
Consider giving a range of time that encompasses an average life expectancy
Good studies show that lifespan estimates, even by the most experienced clinicians, are seldom on target, and often differ from reality by many months, or even years. Clinicians tend to be optimistic in an attempt to preserve hope, and ungrounded optimism fosters a false hope and unrealistic expectations. Always caution patients and families that unexpected surprises can happen. Suggest that it is generally advisable to get critical affairs in order so they won’t be as vulnerable in case things progress sooner rather than later. Reassure them that you will be available to help with issues and support them throughout their illness, whatever happens. Clarify what can be realistically expected and distinguish this from what might be wished for, or what is most feared. Identify the miraculous for what it is—something that happens exceedingly rarely. It may be helpful to say something like “we need to both hope for the best, while we simultaneously plan for the worst. We can’t predict surprises and should plan in case something happens sooner than we are hoping for.”
Always promptly inform families of a grave turn of events. When patients do die, most agree that it is preferable to present death notification in person. If no family is present in the facility, however, telephone notification is often preferable to delay. If using the telephone, call as soon as possible.
Prepare carefully for a telephone notification, following the steps below:
Not telling the news over the telephone?
In rare circumstances, it may be appropriate to ask family members to come to the hospital, rather than telling them about a death by telephone. Factors to consider in deciding whether the risk of potential harm from abrupt disclosure of death warrants delaying notification include the following:
The notifier must decide whether to describe the patient as gravely ill and request that the contact person come to the hospital immediately. If you decide to delay disclosure of the death, make immediate admission of such nondisclosure as soon as you meet the family (e.g. "I'm sorry for not telling you right away over the phone" then give your reason for doing so).
“I am so sorry that this happened to you.” is generally intended as an empathic expression of sorrow, acknowledging and sharing the sadness and unfairness of the situation. By expressing sorrow, clinicians express their human feelings of connection to the patient – that the patient’s loss has touched them as a person. Clinicians must remain aware that genuine expressions of sorrow can be misinterpreted, and should not be made prematurely.
If “I’m sorry” is said prematurely the statement may shortcut a deeper understanding. Patients’ and families’ own expression of loss may be limited. Perhaps better to begin with “tell me the most difficult part…” (or similar) before expressing empathy with “I’m sorry”.
Below are several ways that the empathic expression “I’m sorry…” can be misinterpreted by patients or families. By paying careful attention to the patient’s verbal and nonverbal response to the clinician’s saying “I’m sorry”, misunderstandings can be identified and corrected quickly if they occur.
|Hopes and Wishes|
Patients frequently make statements about hope during a discussion regarding bad news. Sometimes they say they hope to get well or to live a normal life span, and at other times they may describe feeling a complete lack of hope. Honesty should prevent clinicians from giving false hope, yet denying all hope is just as damaging. The parallel requirement for honesty and hope present a communication dilemma in bad news conversations.
An adequate discussion of hope reflects the fact that goals necessarily change as situations alter. For example, instead of hoping for a long life, focus the patient on hoping for quality of life, freedom from suffering or living until a certain milestone, if this is plausible. A more general type of hope is a sense that things will get better and that the patient will find peace. Ask patients what they are hoping for and help them to reframe their hopes into something they are likely to receive. (DocCom Modules 32, 34) Speaking of "wishes" allows patients and clinicians to express a fleeting hope that the patient's circumstances could be different, to join together and temporarily suspend reality.
“I wish we had more effective treatment for your condition.”
“I wish I had some other kind of news to give you.”
“I wish things had turned out better for you.”
By characterizing statements as wishes, the clinician underscores that what is being hoped for is unlikely. This expression, “I wish we had more effective treatment for your condition,” is different from saying something hopeful that may not be connected to reality, such as, “I hope we can find effective treatment.” Whether such statements represent true hope or false hope depends both on the genuineness of the statement, and on the reality of whether effective treatments are available. Do not say, “We are hoping to find more treatment for your condition,” unless there is a reasonable chance of finding such treatment. Instead, express your hope as a wish that simultaneously acknowledges the fact that it is unrealistic. “I wish that we had more effective treatments that we could offer you.” Statements in the form of wishes acknowledge your limited ability to control medical matters and your regret that medicine is not more powerful and effective.
Wish statements are most helpful when they begin a conversation. After such a wish statement, patients might be invited to share their sadness and loss more fully by being asked “What has been the hardest part?” or “As you look to the future, what is your biggest worry?”
Once wishes and disappointments are fully explored, the patient, family, and clinician must begin a search together for new forms of hope and direction that are consistent with the patient’s values. Medicine’s ability to cure or control disease is but one avenue of hope. The search for hope in other dimensions may include living successfully with the disease rather than curing it, exploring experimental therapy (only those which have not been shown ineffective), being free of pain or other symptoms, achieving closure with family members, exploring spiritual or religious issues, or any of a number of personal short-term goals.
|Learning to deliver bad news with honesty, compassion and attention to individual needs and preferences is a core clinical skill that will only improve if you practice and attend carefully to the impact of your bad news conversations with patients and families|
“I just couldn’t believe he was talking about me.”
(A young patient reflecting back on receiving the diagnosis of gastric cancer.)
Clinicians have the privilege and task of delivering bad news almost every day. Sometimes the news is bad no matter who is receiving it (gastric cancer), and other times it is experienced as bad because of personal experience (hypertension in a patient whose parent had a disabling stroke). Following a deliberate, six-step process allows the clinician to become prepared, allows the patient to control the flow of information, suggests ways of responding to the emotions that inevitably accompany bad news and suggests strategies for joining with the patient to create an individualized initial care plan.
|Timothy Quill M.D., Carly Dennis, M.D., Anthony Caprio M.D., Catherine Gracey M.D.,|
|Dennis Novack M.D., Bill Clark M.D., Ron Saizow M.D.|
|Christof Daetwyler M.D.|
|Robyn George (Patient), Frank Gallagher (Husband)|
Clinician on camera:
|Timothy Quill M.D.|
Video Director and Producer:
|Christof Daetwyler M.D.|
Video Camera, Light and Sound:
|George Zeiset B.A.|
Video Assoc. Director:
|Dennis Novack M.D.|
5.0 - 1/10/2019 - Authors' revision
33: Delivery of Bad News - by Timothy Quill MD, Anthony Caprio MD, Catherine Gracey MD, Margaret Seaver MD