Year
Event
1967
First advance directive created by Luis Kutner
1976
First state law (California) legally sanctioning living wills
1976
New Jersey Supreme Court establishes right of family member to act as healthcare proxy (Karen Ann Quinlan Case)
1983
First state law (California) establishing durable power of attorney for healthcare
1991
U.S. Congress passes the Patient Self-Determination Act requiring healthcare organizations to provide information to adult patients about advance healthcare directives upon admission
1997
All states and the District of Columbia have laws establishing durable power of attorney for healthcare
The Failure of Traditional Advance Directives
The promise of the health care AD was that individuals could retain some control over their future healthcare and the medical aspects of the end of their lives. Unfortunately this promise has largely gone unfulfilled. The factors contributing to this failure have been described by many authors and include the following [3–5]:
Relatively few patients complete an AD
The instructions provided in AD documents are often vague and difficult to relate to actual scenarios.
Even when patients have completed an AD their healthcare providers are often unaware of them.
Even when present, an AD does not appear to affect actual care at the end of life
Surrogates named in an AD seldom understand the patient’s wishes
Autonomy may be over-valued as a guiding principle, particularly in western societies.
Planning for future care is often seen as a one-time event when an AD is completed.
Several of the factors above have been attributed to these documents’ origins as legal tools used to assert a right to refuse life-prolonging treatment in certain circumstances. In contrast to the legal approach to AD, a communications approach’ to advance directives addresses the broader concept of advance care planning (ACP) [2]. ACP is a concept which encompasses not only completion of certain legal documents specifying preferences and/or naming a surrogate decision-maker, but also ongoing communication between healthcare providers, patients and patients’ families. ACP involves addressing patients’ and families’ concerns about their future health as well as financial, spiritual and other issues related to care at the end of life. Furthermore, ACP involves ongoing communication between providers, patients and their families as their disease progresses. This is particularly important, as preferences for care have been demonstrated to change over time [6].
Talking with Patients About Dying with Heart Disease
In their landmark 2001 report on healthcare quality in the twenty-first century the Institute of Medicine (IOM) stated that quality healthcare should be [7]:
Patient-centered—providing care that is respectful of and responsive to individual patient preferences, needs and values and ensuring that patient values guide all decisions.
Multiple studies have demonstrated that patients with chronic illnesses such as heart failure frequently want to discuss prognosis and planning for future care with their healthcare providers. Furthermore there is evidence that patients with the opportunity to have such discussions with their physician are more likely to receive end-of-life care consistent with their preferences. Unfortunately there is also evidence that opportunities to have such conversations are frequently missed. The reasons for this disconnect are complex and likely include provider, patient, family and system barriers such as [8]:
Patient barriers: Cognitive impairment, low health literacy, fear, uncontrolled symptoms, depression, language/cultural barriers.
Family barriers: Family conflict, no family available, cultural/language barriers
System barriers: Providers may not be reimbursed for a dedicated visit to discuss goals of care. Providers may not be trained to competently conduct such discussions.
Provider barriers: Physicians and other healthcare providers often lack the knowledge, skills and confidence to discuss goals of care with their patients with chronic heart failure and other chronic illnesses. Communication skills are recognized as core skills in providing patient-centered care, however many clinicians feel unprepared in this area. Providers also describe time constraints as a significant barrier to discussion of goals of care [8]. Cultural and ethnic differences can also pose barriers to effective discussion of goals of care and effective end of life care [9].
Separate studies have reported that heart failure populations have a survival rate 5-years after diagnosis or first hospitalization in the range of 25–35 % putting the disease on par with stage IIIa ovarian cancer and with a worse prognosis than stage IIIb colorectal cancer [10, 11]. Unfortunately clinicians frequently miss opportunities to discuss prognosis, goals of care and advance care planning [12].
All practitioners should develop a repertoire of communication skills for navigating the discussion of diagnosis, prognosis, goals of care, treatment preferences (including resuscitation preferences) as well as values, hopes and expectations for the future.
Communication Tools for Talking with Patients About Living and Dying with Heart Disease
Two fundamental communication tools advocated for advance care planning discussions are outlined in Table 2.2 [13]. These tools will be used in many of the examples to follow and will be highlighted when used. The Ask-Tell-Ask model has been described previously and provides a fundamental framework for discussing difficult issues with patients and their families. The N-U-R-S-E mnemonic is one method of describing empathetic responses to emotions that arise during discussions. This mnemonic itself is less important than developing a repertoire of skills and statements to use in responding to emotion during difficult conversations.
Table 2.2
Communication skills
Tool/task | Possible questions/statements |
|---|---|
Ask | “What do you understand about your illness?” |
“What have you been told about your illness?” | |
Tell | “I’m sorry to tell you that your heart has gotten worse” |
“The test results were not what we were hoping for” | |
Ask | “Sometimes I don’t explain things clearly, can you tell me what you heard in this conversation?” |
“What questions do you have?” | |
N–U–R–S–E—responding to emotion | Suggested language |
N-Name the emotion | “Some people would be angry at this news” |
U-Understand | “This must be very difficult…” |
R-Respect (praise) | “I’m very impressed by how you’ve coped with…” |
S-Support | “Our team with be with you throughout this” |
E-Explore | “Tell me more…” |
Common Communication Challenges in Patients with Heart Failure
Discussing Serious News/Discussing Prognosis and Uncertainty
Heart failure is a chronic illness with a 5-year survival rate on par with many advanced malignancies. Discussing a new diagnosis or the expected future course of heart failure allows patients and their families to plan for their futures as well as to receive care that is consistent with their goals and values. Even though the trajectory of heart failure can be widely variable and prognosticating is difficult and inaccurate, all patients should have the opportunity to discuss their diagnosis and prognosis to the extent they desire [14]. Table 2.3 outlines a suggested approach to discussion of diagnosis and prognosis with suggested language and explanation. Some patients will prefer not to receive prognostic information, and this preference should be honored if at all possible. If such information is needed to ensure informed consent a patient can delegate decision-making to a family member or friend. Practitioners should develop a repertoire of communication skills for discussing prognosis, uncertainty and serious news or changes in condition, and such issues should be revisited regularly rather addressed as a single discussion.
Table 2.3
Discussing diagnosis and prognosis
Step | Example of suggested language |
|---|---|
Prepare setting | “Who else would you like to have here while we discuss this?” |
Assess patient/family understanding (Ask) | “What do you know (or what have you been told) about your illness?” |
Describe diagnosis using easy to understand language (Tell) | “You have heart failure. Your heart is having trouble pumping blood throughout your body. ” |
“Your kidneys aren’t getting enough blood” | |
Give clear, honest prognostic information, remaining hopeful | “Heart failure does shorten people’s lives. The good news is that there are treatments that can help you feel better and live longer” |
Acknowledge Uncertainty | “I can’t say what will happen to you, I can give you some averages from what we see in patients with heart failure” |
“I wish I could predict more exactly” | |
Respond to Emotion with Empathy | “Most people find this conversation upsetting” |
“These are difficult topics” | |
“I’m impressed by how well you’ve coped with the changes in your life” | |
Assess Patient/Family Understanding (Ask) | “Tell me what you understand about what I said, so I can be sure I was clear” |
“What questions do you have about what we have discussed?” | |
Make plans for follow-up and commit to ongoing care | “We will continue these medications for now.” |
“I will bring these issues up periodically. You should also do so if you wish to discuss them.” | |
“I will keep working with you to help you live as long and well as possible” |
Discussing Resuscitation Preferences
Discussion of patient preferences in the event of cardiac arrest should begin early in the course of heart failure and continue on an ongoing basis. Table 2.4 presents the framework, with suggested language, for discussion of resuscitation preferences. Physicians should not hesitate to make a recommendation about resuscitation status and other treatment [15]. Such recommendations should always be based on other discussions about patient goals, values, hopes and fears. In states using the POLST paradigm the POLST form itself can be used to guide discussion of resuscitation as well as other treatment preferences. Resuscitation discussions also provide an excellent context in which to discuss patient preferences for level or location of care as well as to explore any undesired states that the patient would find an unacceptable quality of life.
Table 2.4
Discussing resuscitation preferences
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