Fig. 6.1
Trajectories of dying (From Lunney et al. [8]. Reprinted with permission from John Wiley and Sons)
In most cases, it is difficult for ED physicians to provide a specific prognosis to patients and their families. This challenge may lead to avoidance of the topic. However, attempts at prognostication for patients at the end of life may allow patients and their families the opportunity to set realistic expectations. Unfortunately, patients with HF often have unpredictable trajectories that do not fit within the above models. Therefore, ED physicians may appropriately avoid specific time frames and instead focus on anticipated declines in function and how this may impact the patient’s goals [9].
Despite the variation in death trajectory for HF patients, tools designed to aid in prognostication have been developed. The New York Heart Association (NYHA) functional classification categorizes patients according to symptom severity and functional limitations.
Although the NYHA classification does not specifically address predicted time until death, patients with class 4 symptoms despite optimal medical therapy have a median survival of less than 6 months. Thus, NYHA class can be used in conjunction with the Fig. 6.1 death trajectories for framing a discussion regarding care [10]. However, many HF patients do not progress sequentially through the NYHA stages prior to death, and many class 1–3 patients die suddenly due to an arrhythmia or other acute deterioration in their condition [11].
Another prognostication instrument is the Seattle Heart Failure Model (available at www.SeattleHeartFailureModel.org), which provides estimates of mean life expectancy and survival rates at 1, 2, and 5 years, as well as information on how various medical therapies or devices alter life expectancy [12].
These tools aid physicians in leading a discussion with patients and their families. The presence of the patient in the ED indicates that the patient or family is in distress from physical symptoms, emotional duress, or unmet social/spiritual needs. A discussion of prognosis does not reduce or eliminate distress, but can be used to align patient and family expectations with realistically achievable objectives followed by goal-directed implementation of a management plan [13]. Regardless of prognosis, the emphasis of care focuses on alleviating whatever factors contributed to the patient presenting to the ED. Listening carefully to the patient and family may reveal that the prognosis is already understood, but that there are acute stressors which the astute ED physician can effectively alleviate.
New York Heart Association Functional Classification
Class 1: No limitation of physical activity. Ordinary physical activity does not cause undue fatigue or dyspnea.
Class 2: Slight limitation of physical activity. Comfortable at rest, but ordinary physical activity results in fatigue or dyspnea.
Class 3: Marked limitation of physical activity. Comfortable at rest, but less than ordinary physical activity, such as walking short distances, causes fatigue or dyspnea.
Class 4: Severe limitation in activities. Unable to carry on any physical activity without symptoms. Symptoms may be present at rest.
Palliative Assessment in the ED
In patients with significant cardiac disease that is life changing or potentially life ending, the ED provider conducts a structured palliative needs assessment to identify the totality of palliative care needs. Two proposed models for accomplishing this task are the Focused Assessment (ABCD) [13], which is appropriate for unstable or critically ill patients, and the expanded Needs at the End of life Screening Tool (NEST), which can be performed by an interdisciplinary team [14].
The ABCD instrument allows for a rapid palliative assessment and can be used in situations where time is limited (i.e. cardiac arrest, septic shock) and may be performed concurrently with other interventions by a non-physician member of the care team. Although the mnemonic fits neatly into alphabetical order, the questions may be better addressed in reverse order.
A.
Advance Directive or advance care plan – does one exist? Is it available for review?
B.
Better symptom control – how can the care team address distressing symptoms?
C.
Caregivers – who are the key caregivers, and are they present or available?
D.
Decisional capacity – does the patient have the capacity to make healthcare decisions? Even in the setting of profound pain or dyspnea, patients deserve the opportunity to express basic wishes concerning their healthcare.
The NEST screening tool (Table 6.1) addresses four domains of care for a patient with possible palliative needs. The tool has been studied in the ED and identifies a significant number of such needs that are often unrecognized without a structured approach. However, there has not been a direct comparison of the NEST with a non-formalized physician ‘gestalt’ assessment [15] (Table 6.1).
Table 6.1
The NEST assessment
Needs | Are there social needs (including financial and caregiver issues) that should guide patient disposition? | 1. How much of a financial hardship is your illness for your family? |
2. How much trouble do you have accessing the medical care you need? | ||
3. How often is there someone to confide in? | ||
4. How much help do you need with things like getting meals or getting to the doctor? | ||
Existential | Does the patient have existential needs (i.e., concerns about meaning/spiritual/faith/forgiveness) that contribute to distress? | 1. How much does this illness seem senseless and meaningless? |
2. How much does religious belief or your spiritual life contribute to your sense of purpose? | ||
3. How much have you settled your relationships with the people close to you? | ||
4. Since your illness, how much do you live your life with a special sense of purpose? | ||
Symptom matters | What physical or mental symptoms led to this Emergency Department visit? | 1. How much do you suffer from physical symptoms such as pain, shortness of breath, fatigue, bowel or urinary problems? |
2. How often do you feel confused, anxious, or depressed? | ||
Therapeutic | What should the therapeutic goals for this Emergency Department visit be? | 1. How much do you feel your doctors and nurses respect you as an individual? |
2. How clear is the information from the medical team about what to expect regarding your illness? | ||
3. How much do you feel that the medical care you are getting fits with your goals? |
Communication
Effective communication is fundamental to the practice of emergency medicine, and it is particularly critical when providing care to patients with grim prognoses or when conveying life-changing news to families. Efficient and effective communication is challenging because of the busy nature of the ED, the lack of an established relationship with patients and their families, insufficient information regarding previous discussions between family and primary care physicians, discontinuous or inconsistent access to relevant clinical data, and frequent interruptions common to the ED work environment [11].
Despite these challenges, practitioners who are dual trained in palliative medicine and emergency medicine have promoted employing a standardized approach to communication. These techniques assist ED providers in caring for the cardiac patient whose condition deteriorates or who suffers a cardiac arrest or a life-changing co-morbid event. These situations provide an opportunity for the physician to work with the patient and family to consider the goals of care and how these goals change as the patient’s condition evolves.
The six step SPIKES protocol has been studied as a means for optimizing the success of delivering bad news and has been advocated as an ED-appropriate tool [16].
S – Setting up the interview: arrange for privacy, involve appropriate family members, sit down, manage time constraints and avoid interruptions by notifying other ED staff that you will be having this discussion and request that they minimize interruptions. Consider mentally rehearsing your message, and prepare possible answers to likely questions. Make a connection with the patient by establishing rapport and being mindful of body language. Sit down if possible, make eye contact, maintain an open and forward body position, and consider appropriate physical touch.
P – Perception: Assess the patient’s perception of the current clinical situation. Use open-ended questions, correct any misinformation, listen for evidence of denial or unrealistic expectations. Starting the conversation with a phrase such as “Tell me what you understand about your condition” allows the conversation to proceed in a patient-centered manner.
I – Invitation: Obtain the patient’s invitation / permission to share information. Determine who should receive information and how much information should be shared. This step is important particularly in cultures where patients wish to avoid being informed of any bad news and prefer to have that information shared with a surrogate. It is reasonable for a patient to request NOT to be informed of bad news when that patient appoints a surrogate family member or care provider to discuss the clinical plan.
K – Knowledge: Provide information to the patient. Warn listeners prior to delivering any bad news. Use simple, non-jargon filled language. Avoid excessive bluntness. Give information in small chunks. Use of a “warning shot” such as “I’m afraid I have bad news” prepares the listener for the delivery of unpleasant news. Do not minimize the seriousness of the news in an attempt to provide comfort as this may elicit confusion. If the prognosis is known with a reasonable degree of certainty, it may be appropriate to discuss it if the conversion will assist in planning further care.
E– Emotions: Address the patient’s emotions with empathetic responses. Observe the patient’s emotional responses. Identify the emotions; if needed clarify with open-ended questions. Identify the reason for the emotion. Allow time for the patient/family to express emotions and respond with empathetic statements. Be prepared for a wide range of emotional responses including denial, anger, sadness, guilt or even relief, and validate that the emotional response is not inappropriate. Phrases such as “I see that this is painful for you” and “I wish this was not happening to your loved one” demonstrate compassion. Offering support such as calling a chaplain or other family member may be helpful. Having tissue in the room is helpful, but directly offering tissue to a person who is crying may be perceived as a request that the patient stop crying and “clean themselves up”. It may be preferable to wait for the patient to take the tissue when ready to use it.
S – Strategy / Summary: Discuss next steps and verify understanding. It is important to invite the patient or family member to summarize the information that you have delivered to ensure that there are no misunderstandings. A proposed phraseology to accomplish this is “I know this has been overwhelming but I want to make sure that everything is understood before we move on. Please tell me what you understand about all of this?”
ED staff are often tasked with notifying a family that their loved one has died. The Education in Palliative and End of Life Care Emergency Medicine Curriculum advocates use of the GRIEV_ING mnemonic for death disclosures [17]. This tool encompasses components similar to the SPIKES protocol but has been specifically designed for the ED setting. Clinicians trained in its use have been shown to have improved notification skills. Familiarity with this standardized protocol for death disclosure provides the busy ED physician with a tool to aid in performing this task after a cardiac arrest or other fatal event when emotions may run high [18].
G – Gather: gather the family; ensure that all members are present.
R – Resources: call for support resources to assist the family with their grief (i.e. chaplain services, family, friends).
I – Identify: identify yourself, identify the deceased or injured patient by name, and identify the state of knowledge of the family relative to the events of the day.
E – Educate: briefly educate the family as to the events that have occurred in the ED; educate them about the current state of their loved one.
V – Verify: verify that their family member has died. Be Clear! Use the words “dead” or “died.”
_ – Space: Give the family personal space and time for an emotional moment; allow the family time to absorb the information.< div class='tao-gold-member'>Only gold members can continue reading. Log In or Register to continue
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
