The complex and often unpredictable course of heart failure (HF) provides many opportunities for communication between clinicians and patients about important subjects as advance care planning, disease state education, therapeutic options and limitations, and end-of-life care. Studies of patients with HF demonstrate that, when engaging in such complex communication, specific language matters in patient experience and in shared decision-making with providers. To date, clinical reports have outlined useful frameworks for communication with patients with HF but have not yet broached specific language crucial to furthering whole person care, particularly in the complex and emotional realm of advancing disease and transitions to end-of-life care. In this work, the investigators unpack language commonly used in advanced HF care and provide explicit suggestions to better provide such pivotal communication. In conclusion, specific phrasing may significantly impact patient experiences and outcomes. Communication that focuses on the disease itself and the therapy or intervention in question may help remove the patient from potential negative emotions, thus facilitating more objective shared decision-making with the clinician.
Patients living with a serious, progressive illness, heart failure (HF) have well-described needs for comprehensive supportive care that includes expert communication with clinicians. Patients with HF want to engage in advance care planning ; expect communication about disease progression and available therapies ; and they prefer information—even when considered “bad news”— to be delivered openly, honestly, clearly, and directly in plain language. Specific diction may even affect family bereavement experiences. Nevertheless, clear and timely communication about important information and medical decision-making often does not focus on the life-threatening aspects of the disease. Ultimately, communication about end-stage HF and end-of-life care remain poor in the final stages of life, and patients with HF may receive less palliative care, including expert communication at the end of life, despite demonstrated need.
Most studies on communication in HF have focused on how to “deliver bad news,” but little has focused on the language used during these discussions. How may we discuss HF with patients and families in ways that aim to be accurate, honest, and with plain language although also being supportive and compassionate? Using example dialogs, this article reviews specific word choices when communicating important information to patients with HF about disease state and progression, choices in therapy, goals of care, and advance care planning ( Table 1 ).
| Phrase to avoid | Consider using instead | Rationale |
|---|---|---|
| Phrases that providers use | ||
| You are failing the inotrope | The inotrope (or other therapy) is no longer working. | Removes blame from patient and focuses on the progressing disease or ineffective therapy. |
| You are not a candidate for the LVAD | The LVAD (or medication, or procedure, etc.) will not help you achieve your goal(s). | Focuses conversation on intervention best fit for patient’s condition, rather on than on patient (e.g. person). Aligns clinician with patient to participate in shared decision making. |
| Nothing more we can do for you | No effective therapy to cure (or, mitigate, slow, temporize, etc.) the disease | There is always something that can be done to help. |
| Withholding/withdrawing care | Aggressive life-sustaining (or, organ-sustaining) interventions are no longer helping you/your family member achieve the goals of care. | Care is always continued, even when life-sustaining therapies are contraindicated. |
| Keep him/her comfortable | Focus our care on managing pain and other symptoms of disease progression. | “Comfort care” meaning varies between clinicians and implies comfort only important at end-of-life. |
| Phrases that patients/families use | ||
| S/he wants to live | What goals are important for you to live the best life? | Focuses discussion on what is specifically important to the patient. |
| Do everything | We will continue to do everything that may help achieve your goals, if possible | Clarifies an otherwise unhelpful general statement and focuses on patient’s specific goals. |
Word Choice: Problems and Solutions
“Failing Milrinone”
Mr. Johnson is a 70-year-old man with nonischemic cardiomyopathy (ejection fraction [EF] 20%) who has been receiving continuous milrinone infusion for the past 5 months. Owing to co-morbidities, he is not eligible for surgical advanced HF therapies, including mechanical circulatory support. Over the past few months, he has been admitted to the hospital for cardiogenic shock with increasing frequency. During one admission, his cardiologist communicates that Mr. Johnson is “failing milrinone.” Failing a therapy (in this case, “failing milrinone”) is a common phrase used by clinicians to communicate that a specific treatment is no longer effective. Such irrational phrasing unintentionally places blame on the patient, rather than on the disease (i.e., progressing) or the therapy (no longer effective). Communication about disease progression can be reframed to focus on the therapy, not the patient, being ineffective. These discussions can be held upstream, when palliative inotropes are initiated. Consider the following dialog:
Physician: We are going to start you on this intravenous medication (milrinone) to help your heart. It will only work for a period of time. This is not a cure but a treatment to help improve your quality of life.
Mr. Johnson: This sounds serious.
Physician: Yes. Your heart is very weak, this will help it pump better, but it’s not going to fix your heart. Does this surprise you?
Mr. Johnson: No. I knew my heart was bad, I’ve been feeling weaker. I’m worried.
Physician: Tell me more about your concerns.
Mr. Johnson: So how long do I have?
Physician: That is a good question. I feel you could have a couple of good months with this medication, unlikely it would be years. I wish things were different.
Mr. Johnson: I appreciate your honesty. I have a lot to think about.
Physician: We can continue to talk about this; we are here to help you.
“Candidate for a therapy”
Ms. Roosevelt is a 66-year-old woman with ischemic cardiomyopathy (EF 15%) who is being considered for left ventricular assist device (LVAD) implantation as destination therapy. During her evaluation process, the language of “candidacy” is frequently used. Ms. Roosevelt learns the HF team is determining “whether or not you are a good candidate for the LVAD.” She is disappointed when she learns she is not. She may feel that she somehow failed or did not make enough effort to garner support from clinicians to be considered “a good candidate.” In addition, she may worry, she disappointed her physicians by not adhering more to restrictions around her diet or medication management.
In conversations about specific interventions, avoiding language of patient “candidacy” has the benefits of both removing undue burden of responsibility from subjects for whom the intervention may be inappropriate or contraindicated and framing the conversation around the potential for specific interventions to help the patient achieve specific goals.
Physician: We are working on some tests to determine if the LVAD will help you achieve your goals. It would be helpful for me to know more about you and what you are hoping the LVAD will help you to be able to do.
Ms. Roosevelt: I would like to be more independent, go for walks with my grandchildren, and be able to do more day-to-day activities around the house.
Physician: Your heart is very weak, but I’m also worried about your worsening kidney function and your general weakness and weight loss. I’m worried you are at high risk of several serious complications if we moved ahead with this surgery. Because of this, I do not think the LVAD will work to help you accomplish the goals you describe. Instead, let’s talk about what might help at this point. What are you hoping for?
Ms. Roosevelt: To feel better for whatever time I have left.
Physician: Can you describe what feeling better would look like to you?
Ms. Roosevelt: I would like to be in less pain and have some help with my breathing.
Physician: That sounds like a good goal. I’m wondering if it would be helpful to have some home care services to help manage your symptoms at home.
Ms. Roosevelt: Sure that sounds helpful.
“Doing everything”
Mr. Martins is a 56-year-old man with nonischemic cardiomyopathy (EF 15%) who has been on continuous dobutamine at home for 6 months. He has been admitted to the hospital 4 times in the last 2 months. When the physician asks him about code status Mr. Martins replies that he “wants to live” and asks that the clinicians “do everything.” Unfortunately, statements of “do everything” or “he/she wants to live” are too general to be effective. However, helping patients to clarify specific treatment goals and understand the limits of available aggressive interventions may enhance shared decision-making.
Physician: Mr. Martins, how are you feeling? I’ve noticed you have been in the hospital a lot more frequently.
Mr. Martins: I’m feeling weak.
Physician: Your heart is very weak and I’m worried your heart could stop suddenly. If that happens in the hospital, have you thought about what you would want?
Mr. Martins: I want you to do everything possible. I want to live.
Physician: I understand that you want to live. In these kinds of circumstances, when people say they want to live, they usually mean something more specific, like live to be able to do certain things or enjoy certain relationships. What does that mean to you?
Mr. Martins: I want to live to be able to see my daughter get married next spring.
Physician: That’s an important goal. I want that for you too. But, I am afraid that if your body becomes so weak and ill that your heart stops, no matter how we try, your body will not recover to be able to enjoy that event. You will not return to the level of function you have now.
Mr. Martins: That helps me understand. If that were the case, I would not want to live hooked up to machines.
Physician: We will continue to offer therapies that will help you reach your goals as much as possible, and we will avoid doing things that will not help but only cause harm.
“Withdrawing care”
Ms. Turner, a 56-year-old woman who recently had an LVAD implanted, is now receiving intensive care after a catastrophic intracerebral hemorrhage. Speaking to Ms. Turner’s family, the critical care team suggests “withdrawing care” by weaning off vasopressors and mechanical ventilation and deactivating the LVAD. The family is left feeling angry and abandoned. The framing of this discussion focuses on what we are no longer doing. Changing this discussion to focus on what we are going to continue to do will help families to feel more comfortable and confident that their loved one is receiving the best possible care even when a cure is not possible. Asking Ms. Turner’s family to reflect on what she would want allows the focus to return to the patient although the patient is not able to speak.
Physician: We are really worried about Ms. Turner. She is extremely sick.
Family: Are you giving up on her?
Physician: No. We are very worried she will not survive. We want to get an idea of her wishes and what is important to her.
Family: I don’t think she would want to live like this forever. Do you think she will ever wake up? Will she ever be able to interact with us?
Physician: No. I wish things were different.
Family: Well, now what do we do?
Physician: We continue to work together to best manage her symptoms.
Family: Are you going to use morphine?
Physician: Medications like morphine are helpful not only for treating pain but for relieving shortness of breath.
Family: Can we stay with her? We don’t want her to be alone.
Physician: Of course.
“Keeping your loved one comfortable”
Ms. Winston, a 48-year-old woman recently had an LVAD implanted as a bridge to transplant. After implantation, she developed complications that lead to kidney failure and subsequent initiation of hemodialysis. After frequent admissions for complications related to infections, she is dying of sepsis and multiorgan failure. Her long time cardiologist suggests “keeping her comfortable.”
Phrases such as “comfort care” or “keeping (the patient) comfortable” are often used after aggressive treatment options are no longer available. Two problems exist with this phrase: one is semantic variability (e.g., hospice care vs do-not-resuscitate order vs aggressive symptom management, and so on); the other is an implication that comfort and disease-modifying or curative therapies are mutually exclusive. Focusing these discussions on managing pain and other symptoms of disease progression removes this variability.
Physician: Mr. Winston, I know this is not what we all were hoping for, I wish it were possible for your wife to have a heart transplant.
Mr. Winston: Me too, I’m worried about the future, I don’t want her to suffer. How are you going to help?
Physician: I suggest focusing on the care that will help her most now, given the circumstances, managing her pain, shortness of breath, and any other symptoms that are burdensome.
Mr. Winston: I know she would not want to live like this, but this is a shock to all of us, we thought the surgery would help her.
Physician: Yes, I can’t imagine how difficult this must be for you and your family.
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