Assessing Goals of Care: A Case-Based Discussion

Chapter 9
Assessing Goals of Care: A Case-Based Discussion

Elizabeth Lindenberger and Amy S. Kelley

Whether healthy or facing serious illness, people go through life with a sense of identity, what gives meaning to their lives, and what hopes they hold for the future. “Goals of care” (GOC) refer to those things that are most important to patients as they journey through illness. GOC are likely to change over time as an illness progresses, as prognosis changes, or as patients adjust to disease. Potential GOC may include hope for cure or life prolongation, relief of suffering, maintaining functional independence, or location of death [1, 2]. Patients may have multiple GOC at once, for example, achieving disease cure and relief of pain and other symptoms. Simultaneous goals may be supported by encouraging patients to both “hope for the best, and prepare for the worst [3].”

Eliciting and negotiating GOC require skilled communication on the part of the medical provider. These skills include assessing a patient’s understanding of the disease, providing information about disease and prognosis, responding to emotion, and exploring concerns, hopes, and spirituality. Providers must also be prepared to explore the cultural, religious, or spiritual background of a patient and family, as these factors may influence personal GOC. Through skilled discussions, physicians can help guide patients and families toward care plans that best match their goals [4]. Of further benefit, studies demonstrate that GOC discussions for seriously ill patients are associated with less aggressive medical interventions, lower costs, and increased hospice referrals at the end of life [5, 6].

In this chapter, we will use a patient vignette to illustrate the process of discussing GOC. Each segment offers a step-by-step list of “tasks” as well as specific language. Several key topics (e.g., religion and spirituality) and possible challenges (e.g., using an interpreter) are also addressed.

The Case of Ms Lopez

One morning on a hospitalist shift, you are called to admit Ms Lopez, a 64-year-old woman with idiopathic pulmonary fibrosis (IPF) presenting with shortness of breath (SOB) and hypoxia. Ms Lopez was in her usual state of health until 2 days prior, when she began experiencing worsening cough and dyspnea. She reports requiring more of her home oxygen in order to ambulate a few feet to the bathroom and subjective fevers. In the emergency department, she was found to be hypoxic both by oxygen saturation and ABG, tachypneic to the 30s, but was otherwise stable and not currently requiring intubation. Her chest X-ray showed some bilateral infiltrates that could be consistent with infection. A computed tomography (CT) is recommended for further evaluation. She is being admitted for a probable acute exacerbation of her pulmonary fibrosis, possibly triggered by pneumonia.

Ms Lopez has been hospitalized 4 times this year for acute exacerbations of her IPF. She generally improves with supportive care including oxygen, antibiotics, and steroids. Over the past 2 years, she has been intubated twice for hypoxic respiratory failure. The pulmonologist’s note from her last admission states that this is a progressive and incurable condition. Due to her illness and recurrent hospitalizations, she has become increasingly weak and fatigued and is losing weight. Functionally, she can only walk a few steps before having SOB and needing to rest, even with 2 l of oxygen by nasal canula. She requires help with daily tasks like preparing meals and getting dressed. She has a large and supportive family who help to care for her, and her younger sister, Josephine, recently moved in with her. Because of her poor functional status, she is not a transplant candidate.

You plan to admit her, start antibiotics and steroids, and closely monitor her respiratory status. Given her history, you assume that she would want to be intubated if her condition declined, but you are not sure when or if GOC were discussed with her. You cannot find evidence of a prior discussion in her chart.

9.1 ROAD MAP FOR DISCUSSING GOALS OF CARE

The discussion of GOC is a process. The first conversation may lead to a fuller understanding of the medical circumstances by the patient or family (Part I); may develop a deeper understanding of the patient’s identity, values, and concerns by the medical team (Part II); and even may result in mutual agreement about the GOC at that point in time (Part III). Providers must remember, however, that goals and preferences may shift over time and the discussion of GOC should continue over the course of an illness. Here, we lay out steps for discussing GOC. These steps may not all be completed in one encounter, and the discussion need not be strictly linear. We will illustrate each step with phrases and questions that may be useful in your own clinical practice.

9.1.1 Part I: Lay the Groundwork for Discussing GOC

The first and most fundamental task in identifying GOC is ensuring the patient and/or family’s accurate understanding of the medical circumstances (Table 9.1). The level of detail of this understanding will vary widely across individuals based upon their personal desire for information. Rarely do patients desire to know medical details, such as the specific results of laboratory test, nor is this level of detail necessary for full understanding and informed decision-making. In fact, some details may distract from or muddle the big-picture message. For example, a patient may understand that he has lung cancer that has spread and that it is not possible to cure his disease. Therefore, it is best to begin by finding out what the patient already knows about her condition. Corrections or clarifications can then be addressed as needed. After providing information, confirming understanding is essential before moving on. Following these steps will save time later by avoiding misunderstandings.

Table 9.1 Ensuring Accurate Understanding of the Medical Circumstances

Task	Suggested Language
Prepare for the discussion: Set a time and minimize interruptions Who does the patient want to be present Ensure a private setting where the patient, family, and providers can sit comfortably	“I’d like to find a time to talk more about your medical condition and the treatment plans. Who would you like to have there when we talk?”
Assess the patient’s understanding of her condition and the current medical situation Explore how much information the patient wants to know	“Just so we’re on the same page, could you tell me what you have heard about your medical condition?” “I wondered if you could tell me what the other doctors have told you so far” “Are you the type of person who wants information in detail?”
Ask permission before giving new information	“Is it okay if I explain what the test showed?” “Would now be a good time to discuss your test results?”
Provide information: Give small pieces, starting with the big picture Avoid medical jargon Pause before providing additional pieces of information	“The CT scan shows that your condition has gotten worse” “Unfortunately, we do not have any treatment that can fix the underlying problem”
Check for the patient’s emotional response and respond explicitly to emotional data	“This must come as a shock” “I can’t imagine how painful it is to hear this news” “I wish things were different” “It must be so hard facing this uncertainty”
Confirm patient’s understanding before moving on	“How will you describe what I told you to your sister?”

Case—Ms Lopez: Ensuring Accurate Understanding

You ask Ms Lopez about setting up a meeting to discuss her condition and her medical plan. She says that while her family is wonderful and extremely supportive, she worries about burdening them with this sad information. Therefore, she would like to have only her sister Josephine present during the meeting. You come back later that afternoon when Josephine is visiting. In the meantime, you have received the CT chest report. It reveals bilateral ground-glass abnormalities and honeycombing, increased since the study 6 weeks prior and consistent with progression of IPF, and a new left lower lobe consolidation, suggestive of acute lobar pneumonia.

The patient is in a private room, so you bring in a few extra chairs and ask her nurse to also join you for the meeting. Ms Lopez understands her lung disease is bad, and she says she has been told that it will only get worse. She tells you, though, that she has always been very independent and tough. She worked as a high school math teacher for 28 years, until she had to start oxygen therapy 3 years ago. While she has been told that there is no cure for the disease, she keeps hoping that something new may be discovered that will help her.

She is not surprised by the current CT scan because this has happened before. She hopes she will get better this time without having to go on the ventilator machine. You tell her, “Unfortunately, we do not have any treatment that can fix the underlying problem.” The patient is silent and her sister reaches out to hold her hand. After several seconds, you add, “I wish things were different.” She looks you in the eyes and says, “Me too. I know we can’t fix my lungs completely, but there must be some things we can do to help me breathe.”

9.1.2 Part II: Assess Goals and Values

Assessing goals and values involves four components (Table 9.2). The first step is to explore communication preferences. Patients’ personal and cultural backgrounds may impact how they prefer to receive information. Some patients, for example, may prefer to have their families make medical decisions for them.

Table 9.2 Assessing Goals and Values

Task	Suggested Language
Identify communication preferences	“Some people want to know everything about their medical condition, and others do not. How much would you like to know?” If a patient prefers to have family be primary decision-makers, then: “Would you like me to speak with them alone, or would you like to be present?”
Explore what gives life meaning	“Before we talk about next steps, I wondered if you could tell me more about what your life is like when you are not in the hospital” “What is important to you?” “What do you enjoy?” “What is most important to you if your time is limited?”
Identify concerns	“What concerns do you have about the future?” “What else?” “What’s the hardest part of this for you and your family?”
Assess unique cultural values	Is there anything that would be helpful for me to know about how you and your family view serious illness? Are there any cultural beliefs, practices, or preferences that affect you during illness?
Assess spirituality F—Faith and belief I—Importance C—Community A—Address in care	“Do you consider yourself spiritual or religious?” If yes, continue below “Have your beliefs influenced how you take care of yourself in your illness?” “Are you part of a spiritual or religious community?” “Is this of support to you? How?” “How would you like me to address these issues in your health care?”

The second step is to explore what gives life meaning to the patient, that is, what people and activities are most important and what he or she most enjoys. The third step is to identify your patient’s concerns about the future. What does your patient most fear, and what has been most difficult about being ill.

The fourth step to assessing goals and values is a cultural and spiritual assessment. Providers should address any unique cultural values that may affect decision-making [7]. Spiritual and religious beliefs may also impact patients’ health in a variety of ways, including illness beliefs, coping strategies, and community supports. Exploring spirituality helps providers incorporate beliefs and traditions into individualized treatment plans and also encourages patients and families to draw support from their spiritual traditions. Spiritual support by inpatient medical teams may also improve health outcomes at the end of life. In one study of terminally ill patients well supported by religious communities, receiving spiritual support from the medical team was associated with fewer aggressive interventions and higher rates of hospice use [8].

A spiritual assessment involves exploring how patients’ beliefs and faith traditions affect their relationship with illness. The FICA tool, outlined in the following, is one widely used method of spiritual assessment [9]. A spiritual assessment may begin with an invitation such as “Is it ok if I ask you about your spiritual beliefs?”

Tags: Hospital-Based Palliative Medicine

Aug 14, 2016 | Posted by admin in EMERGENCY MEDICINE | Comments Off

9.1.1 Part I: Lay the Groundwork for Discussing GOC

9.1.2 Part II: Assess Goals and Values

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Assessing Goals of Care: A Case-Based Discussion

9.1 ROAD MAP FOR DISCUSSING GOALS OF CARE

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