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Palliative and End-of-Life Care in Neurological Disease
Introduction
Neuropalliative care represents both a growing subspecialty among neurologists as well as a set of palliative care skills that are relevant to all clinicians caring for patients with serious, chronic, advanced, or terminal neurological diseases ( ). Patients with neurological disease have high symptom burden, experience functional and cognitive disability, and typically a decline over time, as well as significant caregiver needs. Palliative medicine is a specialty that focuses on maximizing quality of life through timely and careful assessment and alleviation of symptoms and other sources of suffering, conversations around goals of care, and caregiver support. Incorporating a palliative approach to care in the management of patients with a variety of neurological conditions promotes patient- and family-centered care that aligns with their goals.
Communicating Difficult News
Clear and effective communication is a cornerstone of high-quality care and a prerequisite for developing a trusting patient–physician relationship. Skilled and compassionate communication can ease the burden of a symptom or diagnosis and make a challenging situation more manageable ( ). Neurologists come into their profession with a wide variety of communication skills. As we consider the biomedical and physiological as well as the psychosocial effects of an illness on the patient and their families, it is important that we consider a set of basic tools for all clinicians ( Table 57.1 ).
TABLE 57.1
Basic Communication Skills
| Authentic and active listening | Communicate with empathy and compassion |
| Narrative competence to elicit the patient’s story | Communicate prognosis for quantity and quality of life |
| Effectively elicit individual treatment goals and engage in shared decision making | Effectively share information with the patient and family using terms they understand |
As neurologists accompany patients and their families on a journey, that in some cases may last only hours to days after a catastrophic illness, and in other cases years and even decades, the expectations are rarely for a cure. Instead, a variety of challenges may occur such as increasing symptom burden and disability, changing social roles, loss of personhood, and struggles with finding meaning and hope in the face of prognostic uncertainty. Patients and their families will need to consider their values in the setting of the neurological disease and plan for what may happen in the future. Serious illness conversations are necessary at various time points along this journey to ensure correct information exchange, trust building, and, most importantly, that patients receive medical care that matches their values. Multiple professional societies, including the American Academy of Neurology (AAN) and the Accreditation Council for Graduate Medical Education (ACGME), emphasize communication with patients and families as key components and milestones of neurology training, yet few neurologists receive formal training during residency ( ). One sign of inadequate communication is the lack of advance care planning for patients with neurological diseases; for example, recent studies suggest that only one in five patients with advanced dementia and less than half of well, able stroke survivors have advance directives ( ). Even though we know that timely, honest, and iterative serious illness conversations improve patient and family quality of life ( ), it is rarely, if ever, easy to have them. Barriers to these conversations include deficits in skills and knowledge, time constraints, and discomfort as well as a feeling that giving bad news diminishes hope or could end a trusting patient–physician relationship ( ). Research and practice, however, suggest that these skills can be learned, and clinicians’ comfort levels can substantially increase ( ); that these conversations do not need to be long, can be divided up, and may allow for additional billing codes ( ); and that early, skilled conversations about prognosis reduce anxiety, improve quality of life, and can strengthen relationships with providers ( ). Knowing better (a) when and (b) how to have these conversations will enhance the patient and family experience of care as well as the work life of healthcare clinicians.
a. Serious Illness Conversation Triggers
During the course of a serious illness, expected and unexpected events occur that may serve as a signpost for providers, but also for patients and their families if appropriately prepared, to consider a new or repeated conversation about the “status quo” in terms of their disease, their treatment, and their goals for next steps. Such a trigger may also serve as a prompt to consider a referral to a palliative care specialist, depending on the specific needs of the patient and family, the skillset of the primary team, and the local resources available. Examples of such triggers are listed in Table 57.2 . In addition to these triggers, setting up routine times to revisit such conversations should be considered. Ample examples exist in clinical practice where opportunities for serious illness conversations were missed and discussions around life and death had to be held in a crisis situation, when the patient was unable to participate and a trusted clinician was not available.
TABLE 57.2
Serious Illness Conversation Triggers
General
|
A New Event or Intervention ( proactive when event is anticipated, reactive when it is occurring)
|
A New Loss
|
A New Symptom
|
b. Serious Illness Conversation Skills
Serious illness communication invariably occurs at many levels, including a cognitive and an affective (emotional) level. Delivering serious news therefore requires a delicate balance of compassionate information delivery and attention to emotions. The theory is that when emotions are not brought to the surface by acknowledging or supporting them, the patient’s ability to absorb any more information is restricted. Sometimes, emotions hide behind a cognitive statement. For example, telling a patient he or she has amyotrophic lateral sclerosis (ALS) may elicit an immediate question “How long do I have?” or “How can you be so sure?” While the cognitive answer to this question may need to be addressed in some way during this conversation, the emotions in this question need to be considered first: “I know this was not what we had been hoping for” (see Table 57.3 for other examples). The following 5-step roadmap can be used when conducting a serious illness conversation and has been adapted from a variety of valuable resources (Back et al., 2007) and at www.vitaltalk.org .
- 1.
Prepare: Before going in to a meeting, the clinician should take a moment to “get ready” by asking what this news will mean to the patient or family and who needs to hear it: Is the patient alone? Are the people the patient would want in the room—family members, faith representatives, friends? What needs to be considered during this conversation ( Table 57.4 )? Preparing also means having a place that is quiet and where everyone can sit down.
TABLE 57.4Key Considerations During Clinic Visits With Patients With Serious Neurological DiseasesInformation regarding the disease -
What does this mean for the patient? For the family?
Symptom management -
What are the common symptoms that may arise? What are options for treatments?
Mood and coping -
Monitor for adjustment and mood disorders
-
Encourage a support system
Progression of disease and prognostication -
What is the typical trajectory of this disease?
Advance care planning -
Living will, healthcare surrogate, residential plan, estate/financial planning
-
- 2.
Assess: Before giving information, it is important to “know the audience” and to ensure that all participants in the room, even if it is just the clinician and the patient, are on the same page. Ask the patient/family what they have heard already. This not only allows them to tell their story the way they understand it but also helps the actively listening clinician understand their coping strategies and their emotional state and then calibrate the information given in the next step.
- 3.
Inform: Tell the news in one simple sentence. Short and concise is usually better than long-winded and should be followed by a pause that allows step 4.
- 4.
Expect and Respond: Sensitive diagnostic acumen is needed to read and recognize an emotion. Examples of how to respond to patients’ or families’ emotional cues are listed in Table 57.3 . Steps 3 and 4 will often be repeated as more detail is desired. Sometimes, it can be helpful to ask the patient’s permission to provide more detail. Not everyone needs or desires the same amount of information.
- 5.
Ask: The final “Ask” allows the clinician to ensure that the patient/family understood. One way to gage a patient’s understanding might be to ask how he or she will be explaining all of this to family members after leaving this meeting.
TABLE 57.3
Responding to Emotions
. Mastering Communication with Seriously Ill Patients Balancing Honesty with Empathy and Hope. Cambridge University Press, Cambridge, England; New York, p. 1 online resource (x, 158 pages).
| Name | I can see that this is very…; People often feel … in this situation |
| Understand | I can only imagine how … this must be |
| Respect | I am so impressed by your commitment to your mother |
| Support | We will work through this together |
| Explore | Tell me more; tell me what’s going through your mind |
Incorporating Palliative Care Into Specific Disease Categories
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