Chapter 82: Intensive Talk: Delivering Bad News and Setting Goals of Care

One of the most important responsibilities of health care providers in the intensive care unit (ICU) is effective communication with seriously ill patients and their family members. Generally, ICU patients are unable to participate in medical decision-making. Therefore, discussions about prognosis and treatments are often held with family members. In this chapter, the term family member will be used to describe related family members, loved ones, or legal surrogates responsible for medical decision-making on behalf of the patient. The ICU family meeting should generally occur within 72 hours of ICU admission. Family meetings are associated with increased patient, family and provider satisfaction with the type of care received, and more preference congruent care. We outline key strategies for conducting meaningful and effective ICU family meetings.

Patients with an advance directive, or patients who participate in discussions with their doctor about their preferences for care as their disease progresses, receive less intensive care in the final weeks of life, are less likely to die in the hospital or ICU, and have improved quality of life.¹ Unfortunately, most patients in the ICU have not had prior discussions regarding their treatment preferences in the outpatient setting or on the medical and surgical floors with health care providers. These difficult conversations are therefore often left to members of the ICU team. Although earlier conversations about treatment preferences is preferred, studies show that patients and family members respond well to anyone with good communication skills, even if the provider does not have an established relationship with the patient or family. In fact, an ICU provider trained in effective communication may conduct a more successful family meeting than the primary physician.

Family satisfaction is directly impacted by effective communication strategies. Factors associated with increased satisfaction include high-quality communication, consistent information from all caregivers, use of empathetic statements, decision-making support, and family-centered care. Patient survival alone is not always correlated with increased family satisfaction.² The mnemonic VALUE has been developed to help providers better understand and manage family emotion during interactions and family meetings. The use of VALUE in a large ICU study during family meetings for patients who eventually died in the ICU showed that the surviving family members experienced less post-traumatic stress disorder, anxiety, and depression several months after the death of their loved one when these communication strategies were used. VALUE reminds us to value and appreciate what surrogates communicate (V), acknowledge emotion with reflective statements (A), listen (L), understand who the patient is as a person by asking open-ended questions (eg, “Can you tell me what kind of a person your mom was before she got sick?”) (U), and to elicit questions (E).³ This study highlights the importance of effective family meetings, not only for medical decision-making, but also for mitigating the suffering and bereavement of family members.⁴

Regardless of the intensity of treatments, palliative care should be fully integrated with intensive care and not separate from potentially life supporting therapies. In fact, the marketing of palliative care as “an extra layer of support to the ICU care already being provided” has increased access to palliative care. In one groundbreaking study, patients with stage IV lung cancer, who had concurrent palliative care with cancer-directed treatment, were less likely to die in the hospital or ICU and had a better quality of life with less depression. Although the patients in the concurrent palliative care arm received less intensive care at the end of life, they lived three months longer than the control group receiving conventional cancer care alone.⁵

The skill of effective communication is as important as the ability to place a central line or treat sepsis and similarly requires practice. There are several key principles for effective family meetings. These include being prepared for the meeting, mindful listening, allowing time for periods of silence, verbal expressions of empathy, avoidance of medical jargon, and ensuring that family members understand the information. These are described below.

Prior to the family meeting, the clinician should review all pertinent information. Prognostic information should be clarified using medical data resources such as eprognosis.org.⁶ The physician should consult with the bedside nurse, who often has key pieces of information about the patient’s care and about any nuances of family politics that may become evident in the family meeting. The nurse also plays a crucial role in reinforcing concepts discussed during the meeting and answering questions later from family members. Other team members may also be useful during the family meeting such as the ICU social worker or chaplain. The location of the meeting should be in a private space without the concern for interruptions, and all participants should be seated. If a room is not available, the meeting could occur at the end of a hall or an empty waiting room. It is imperative that all participants have the chance to be seated. Most successful meetings last about 30 minutes and those that run beyond this time frame may in fact lose their effectiveness as the ability for family members to take in new information is exhausted.

Start the meeting by introducing everyone in the room and explaining the role of each provider. About half of the meeting time should be spent actively listening to family members. During a 30-minute family meeting, the clinician should be listening for 15 minutes and allow time for questions. This can be hard for some clinicians but listening rather than talking is critically important for an effective meeting and may even mitigate the risk of post-traumatic stress disorder, anxiety, and depression for survivors. Participants feel validated and suffer less guilt later. There may also be periods of silence when family members are grappling with difficult news. The clinician should respect the need to absorb this information and allow time for silence before moving on with an empathetic statement such as: “I know this news is very difficult for you to hear.” Verbal expressions of empathy include statements such as: “I wish I had better news about your mom.” “I wish his condition could improve.” These verbal expressions recognize and legitimize the emotions being felt by family members while creating a relationship of trust with the provider.

Communication should also avoid medical jargon. Phrases like “the prognosis is grim” or “her ARDS is preventing weaning” are meaningless to most lay people and can hijack a well-intentioned family meeting. Instead a clinician could say: “I am worried he is beginning to die.” “The scarring in his lungs is preventing him from being able to breathe without the life support machine. I’m concerned his lungs may not get better. We will have to make some difficult decisions in the next few days about what to do.” Difficult news can be introduced with a sentence in preparation such as: “Unfortunately I have some bad news to share with you about your father.”

To ensure that family members have understood the information, a simple framework for the meeting is ASK–TELL–ASK.

1. ASK—Ask the patient and family member about their own understanding of medical condition and prognosis. This can be done with a question such as:

   “Can you tell me what you know about your mom’s condition so far?”

   “What have the doctors told you about your brother?”

   “So I can better understand, can you tell me what you know about your cancer and what is likely to happen now?”

   “What do you think is going on with your son?” “Can you tell me how you came up with this information?”

2. TELL—Provide information about the medical condition, treatment options, and prognosis. Deliver the news in language that is simple and easy to understand. Avoid all medical jargon. Generally, it is advised to summarize the medical condition and major problems to be discussed during the family meeting. Keep in mind that family members are stressed and may have limited ability to understand large blocks of information at one time. Give two or three bits of information at a time and pause to allow families to absorb the information and in case clarifying questions arise. Provide information about treatment options, including risks and benefits for each treatment.

   When discussing therapeutic options, it is important to include palliative options in addition to disease-directed therapies, if appropriate, and to frame palliative care as a treatment option. This can be done with statements such as:

   “Since the dementia is very advanced, and your mom has not been able to come off the breathing machine, we have two options for our next steps. We can remove the breathing machine and keep her comfortable or we can place a more permanent breathing tube in her neck called a tracheostomy which would allow her to go to a nursing home on the breathing machine in about a week.”

   When discussing prognosis, always include the range of possible outcomes, given the uncertainty with each individual patient. For example, one might provide information for life expectancy in hours to days, days to weeks, weeks to months, or months to a year at the most. This can be done with statements such as:

   “Most patients who have cancer in the lung and liver who are in the ICU for serious infection and low blood pressure like your grandmother die within days to a week.”

3. ASK—Provide an opportunity for questions and expressions of emotion. Agree on a plan for next steps. Examples are:

   Can you tell me what you’re most worried about right now?

   Given what we’ve just talked about, what is most important to you now?

   What do you think should be done now?

   I wish I had better news for you. How can I help you cope right now?

   Structure and reliability can be useful tools to better help families cope with grief and despair. To conclude the meeting, summarize the treatment plan and set up a time for follow-up discussions when appropriate. For example:

   So we discussed that we will do a 48 hour trial on the breathing machine with antibiotics for the pneumonia and emphysema. We’ll meet again here in two days at 4 PM to re-evaluate how things are going. Is that okay with you?

   We will wait for the priest to come later this morning. We will remove the breathing tube and stop the kidney dialysis after his visit and when your other children arrive sometime later today. We will continue to do everything possible to keep your daughter comfortable.

   We will start the artificial feeding today through the tube in the nose. We will also get another brain scan today to see if the size of the stroke and bleeding has increased. If so, we will call the neurosurgeon back to help us decide if surgery would be helpful. We will meet again tomorrow around 11 AM after morning rounds to discuss the results of the brain scan with you.

   Finally, express empathy again at the end of the meeting. For example:

   I wish things were different for your mom. We will work hard to make sure she is as comfortable as possible.

   I can see how well you have cared for your dad in your home over the past three years as his dementia and heart failure progressed. Unfortunately this stroke was so large and so sudden, there was nothing anyone could have done to prevent it. We will continue to do everything we can for his comfort. I am so sorry.

A wide range of family emotions should be expected during family meetings. The clinician should be present emotionally (responsive to the emotions of family members), and mindful of the verbal and nonverbal responses from family members. When emotions escalate, often the best course of action is to listen and to recognize the emotion. If anger at a particular situation is being expressed, one might say: “Let me make sure I understand you correctly—you’re angry that the evening nurse did… is that right?” Or you might say: “Thank you for making me aware of that problem; I will speak with him about what you’ve mentioned.” When a problem is brought up during the family meeting that can be validated, one should say something like: “You’re right, I wish it didn’t take two days for the CT scan to be performed. I can see why you’re angry.” Often validating or hearing what is of concern in the moment can open doors for a more productive meeting regarding the treatment plan and goals of care by establishing a relationship built on trust.

Providers are often afraid to discuss accurate prognostic information with patients and their families for fear of removing all hope or causing sadness. A study of hospitalized elderly patients showed that patient preferences for end-of-life care were not documented or incorrectly documented in the medical record 70% of the time.⁷ Most studies, however, indicate that discussions of prognosis lead to greater patient satisfaction, improved concordance between treatments wanted and those actually received, less aggressive care at the end of life, and improved psychological outcomes for patients and their families. In fact, inadequate preparation for death is associated with poor bereavement outcomes for survivors with complicated grief, post-traumatic stress disorder, and a sense of regret or guilt.

In providers who do discuss prognosis, survival is often overestimated. In one study physicians overestimated survival by 5-fold.⁸ In fact, the longer a physician knows a patient, the more likely they are to provide an overly optimistic survival rate. Therefore, providers should prepare for these discussions with tools that use evidence-based calculators to improve prognostication such as eprognosis.org.⁹

Despite prognostic communication, families may not “hear” what clinicians tell them. Surrogate decision-makers generally believe that their loved one has a better chance of survival than the odds being cited.¹⁰ For example, if a clinician says there is a 10% chance of survival, the family member may believe that their loved one has about a 50% chance. These optimistic biases may be due to the belief that the patient is stronger than most or that the provider is misinformed and does not have all the information.

A family member may say: “My mother is a fighter. She had bad pneumonia before and walked out of here just fine last month.” A reasonable response to this may be to highlight why this situation is different from before and the outcome will likely be different as well. One might say: “I understand your mom is a fighter and survived the bad pneumonia last month. This time is different though because your mom is on a life support machine now and the emphysema has progressed. I’m worried she won’t be able to breathe on her own again.”

Optimistic biases are further reinforced by television shows that depict unrealistic survival rates following cardiopulmonary resuscitation (CPR) and create an expectation by family members of overly hopeful results and superior functional outcomes than are actually possible.¹¹ Here, the Ask–Tell–Ask framework of communication also allows for clarification.

A family member may ask a question: “How long does she have to live?” The provider should answer honestly if she knows. For example, one might give an accurate range and say: “Most people in her condition can live for days to a week.” A follow up might be: “Knowing that time is short, are there others we should call to be here now?”

It is equally important to discuss a patient’s likely functional outcome if they do survive their ICU or hospital course. This may significantly impact medical decisions. Uncertainty can be acknowledged with phrases such as:

Finally, when decisions are made for patients to receive life-supporting technologies, they should include clearly defined markers of success or failure of the intervention, and an end-point if unsuccessful. This will facilitate discontinuation of unwanted life-sustaining therapies if the condition fails to improve or deteriorates. Time-limited trials may be warranted if there is uncertainty about the reversibility of the illness. For example, a 48-hour trial of mechanical ventilation and ICU care may be employed to assess whether the pneumonia resolves in an elderly patient with end-stage heart failure, and can be withdrawn if there is no clinical improvement or clinical decline.

It should be noted that the overall goal of effective communication strategies in the ICU is to align medically appropriate treatments with patient and family values. For some, every moment of life has value regardless of quality. For these patients, family members may believe that survival alone, despite the fact that the patient may be ventilator-dependent, comatose with a feeding tube, and discharged to a long-term care facility, is an acceptable outcome.

Palliative care is an integral part of good ICU care. One strategy for involving palliative care consultants in the ICU is the use of screening tools to identify patients for whom consultation could benefit.¹² Several clinical triggers exist to prompt a palliative care consultation and include ICU patients with a hospital length of stay greater than 10 days prior to ICU admission, stage IV cancer, age greater than 80 years with two comorbidities, stroke and respiratory failure, terminal dementia, multisystem organ failure, and patients post cardiac arrest.¹³ Others have used the surprise question: “Would I be surprised if this patient died in one year?” If the answer to this self-addressed question is no, palliative options should be considered and discussed.¹⁴

The difficult or hostile family presents unique challenges when leading a family meeting. It is generally advised to start by naming the emotion being observed and allowing the family member to express their anger or frustration. One might say: “I see how angry you are about the care your daughter is receiving in the ICU.” “I can see how angry you are that the CT scan wasn’t done this morning. Let me find out what time it is scheduled for today?” On the other hand, some recommend to understate the emotion and to instead show curiosity, for example: “I’m wondering if you are concerned.” The argument being that “emotion naming” may make patients feel as though they were being labeled.¹⁵ With either style, practice and feedback will help the clinician master this particularly difficult skill.

The family that “wants everything done” in the setting of terminal illness is generally expressing intense grief and sadness at their impending loss. Rather than take the phrase to literally mean the family wants intubation, surgery, chemotherapy, or resuscitation during the dying process, it is best to explore what is medically appropriate for the patient, given the clinical condition, and discuss this with the family while acknowledging their intense pain. Clinicians should only offer and provide treatments that are medically appropriate. There is no medical, ethical, or legal obligation to offer treatments that will not work to benefit the patient and that violate accepted medical guidelines or ethical standards of care. One response to the family that “wants everything done” may be something like: “Can you tell me what you mean by everything done?” “What you are hoping the surgery will accomplish for your brother?” It is very important to understand what the family believes will happen if the requested treatments are done.

The expression of “I want everything done” may also indicate a lack of trust in the clinician or institution. With skillful communication by the clinician, trust is earned over time. Nonetheless, clinicians should only offer medically appropriate therapies that can include disease-directed treatments, palliative care, or both. A provider should feel comfortable making a therapeutic recommendation based on the values and goals expressed during an effectively run family meeting.

Examples of statements limiting the treatment options are:

“Getting the DNR” from a distressed family member for a terminally ill patient is a dreaded “task” often delegated to the most junior physician (the intern). This “task” can be very stressful, particularly when prior training has been limited. Several key strategies can make this discussion more effective. First, the clinician should recognize that this may be the first time anyone has addressed preferences for resuscitation with the patient or family member, despite the fact that the patient may have had the diagnosis of terminal illness for weeks or months prior to their current ICU admission. Second, the clinician should remember that resuscitation is a medical treatment aimed at restoring cardiopulmonary function when the heart or lungs stop working temporarily. CPR was never meant to be performed on a patient dying an expected death from a terminal disease. Third, the clinician should feel empowered to make a recommendation about the code status to the family member or patient based on what is known about their personally held values and beliefs:

When a patient suffers cardiopulmonary arrest, the clinician is required to perform resuscitative measures in accordance with medical standards, unless there is a DNR order. These efforts should be medically appropriate and the clinician should not perform medically inappropriate interventions on a patient simply because they are asked to do so. Additionally, there is no legal or ethical obligation to run a code for an arbitrarily defined period of time if the return of spontaneous circulation is unlikely. In situations where there is no DNR order for a terminally ill patient dying of their disease, only appropriate resuscitative measures should be attempted. In addition, the moral distress imposed on providers who are asked to perform procedures that are not medically indicated and are highly unlikely to reverse the disease process in a dying patient must be recognized. This moral distress is felt especially by the youngest team members who are not actively engaged or in control of the decision-making, such as interns, trainees, and new nurses.

Every effort should be made to ensure that treatments align with patient and family preferences, rather than just simply left to chance. Thoughtful advance directives and DNR conversations ideally should occur in the outpatient setting when a diagnosis of a terminal disease is made.¹⁶ In the absence of advance directives, opportunities often exist during the hospitalization prior to the ICU transfer for less rushed DNR discussions. Since the advent of the rapid response teams nationwide, there has been an increase in DNR discussions occurring and possibly protecting patients from being admitted to the ICU to die. This outcome of rapid response teams may in fact result in reduced intensity of treatment during dying, which may be more closely aligned with patient values and preferences.

Nearly 1 in 5 Americans die during or immediately after ICU-level care, often with pain, suffering, and isolation. Intensity of care at the end of life has also increased over the past decade with ICU use in the final 30 days of life in 2009 occurring at a rate of 29.5% for Medicare beneficiaries.¹⁷ Family members of loved ones who die are at risk of experiencing post-traumatic stress disorder and depression. Clinicians should practice conducting effective family conferences as they would for any other ICU procedure. Several websites are available to enhance communication in the ICU with seriously ill patients and their family members, such as Improving Palliative Care in the ICU (IPAL-ICU)¹⁸, Oncotalk Videos,¹⁹ and IntensiveTalk.²⁰

Skillfully led family meetings that focus on mindful listening and effective communication increase satisfaction and ensure that patients receive the ICU care they want and value.