Serious Illness Conversation in the Care of Atypical Parkinsonian Disorders: A Practical Guide for Neurology Clinicians

Abstract

Background

Compared to Parkinson's disease, atypical parkinsonian disorders (APD) are characterized by a more rapidly progressive course, often leading to profound disability. Effective communication between clinicians, patients, and care partners is essential to support patient‐centered care and shared decision‐making. However, most neurologists lack formal training in serious illness conversations (SIC).

Objective

To develop a practical SIC guide tailored to the needs of individuals with APD.

Methods

Members of the CurePSP Centers of Care Palliative Care Working Group, in collaboration with a SIC education expert (TC), developed a SIC guide for APD. A literature review was conducted, followed by online consensus‐building rounds.

Results

Applying core communication principles—such as active listening, pausing, naming and validating emotions, assessing understanding, and reframing—can foster alignment between clinicians, patients, and their care partners. Navigating the balance between maintaining hope and providing realistic, anticipatory guidance remains challenging but best achieved by honest, compassionate dialogue. Four practical guides were developed, addressing common and often challenging scenarios: delivering an APD diagnosis, eliciting patient goals in the context of changing clinical status, addressing safety concerns, and discussing quality of life and end‐of‐life considerations.

Conclusions

Patients and their care partners living with APD benefit greatly from individualized guidance, and honest, empathic communication is a vital part of patient‐centered care. While existing SIC frameworks offer valuable foundations, further research is needed to optimize their adaptation for APD—identifying best timing, specific frameworks, relevant outcome measures, and education strategies to build team‐wide competency.

Atypical parkinsonian disorders (APD) comprise a group of rare neurodegenerative diseases, including progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal syndrome (CBS), and dementia with Lewy bodies (DLB). These conditions present with varying degree of clinical parkinsonism, often leading to initial incorrect diagnoses of idiopathic Parkinson's disease (PD), which can delay access to specialized care. ¹ Compared to PD, individuals with APD experience a less robust clinical benefit with dopaminergic therapy, increased burden of non‐motor symptoms, and a more rapidly progressive disease course, often leading to profound disability and significant strain on care partners. ² , ³ Effective communication between the members of the healthcare team, patients and care partners is essential for patient‐centered care and shared decision‐making. However, research indicates that poor communication remains a significant barrier to timely and appropriate care for individuals with APD. ⁴ In a large survey of patients and former care partners of people with MSA, 41% reported that no information about the disease was provided at the time of diagnosis and 44% expressed that in retrospect, it would have been helpful to have discussed future planning, given the multifaceted challenges—physical, psychological, emotional, social and financial—they encountered. ⁵

Clinicians are trained to follow systematic approaches to diagnosis and treatment; checklists and standardized documentation templates abound to remind us of specific tasks. While this framework offers a scientific, standardized, and replicable approach, patients and care partners living with APD often have needs that extend beyond standardized protocols. What they most need from clinicians and disease experts is personal, individualized guidance and authentic human connection throughout their illness journey. ⁶ When these aspects of care are lacking, it can erode patient trust and adherence to treatment plans. ⁷ Empathic and honest communication and education about how to prepare for the future (“anticipatory guidance”) are powerful tools available when managing an incurable progressive neurological disorder. Yet evidence suggests that clinicians find serious illness conversations (SIC) difficult. Surveys of neurologists found that 65% of them experienced high to moderate stress and anxiety when delivering the diagnosis of progressive neurological illness, and 80% found being honest while maintaining hope, the most challenging aspect. ⁸

Several frameworks have been developed to structure SIC, primarily from oncology and palliative care literature. ⁹ , ¹⁰ However, neurologists often do not receive formal training in SIC despite frequently managing serious, progressive neurological illnesses. ¹¹ One way to address this potential gap is to encourage a “palliative care” approach to the care of seriously ill patients, with focus on eliciting and addressing the needs of patients and care partners emphasizing the provision of comprehensive symptom management, quality of life, and holistic, interdisciplinary care. ¹² Emerging evidence supports the integration of palliative care principles in managing chronic, progressive neurological diseases, such as APD, demonstrating improvements in patient and care partner outcomes ¹³ , ¹⁴ throughout the entire arc of their illness journey—as early as the time of diagnosis.

The goal of this educational review is to provide a practical communication guide, or toolkit, for neurologists and other neurology clinicians, including advanced practice providers (APPs), nurses, social workers, and rehabilitation therapists, delivering individualized patient‐centered care to patients and care partners navigating APD. First, general communication principles that can be applied across clinical settings are reviewed. This is followed by a discussion of specific and often challenging scenarios commonly encountered in the care of people living with APD, including issues arising at the time of diagnosis, during routine follow up, after acute changes, and as their disease progresses—culminating in conversations around end‐of‐life goals. Finally, gaps in current knowledge are addressed, proposing directions for future research.

Methods

This educational review was developed by an interdisciplinary team comprising members of the Palliative Care Working Group affiliated with the CurePSP Centers of Care network, as well as an expert in serious illness communication (TC). The authors included a palliative care clinician, neuropalliative care specialists, movement disorder specialists with expertise in the care of patients with APD and social workers with extensive combined experience in movement disorder clinics.

The development process began with a targeted literature review focused on palliative care principles, communication strategies, and the clinical management of APD, including progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal syndrome (CBS), and dementia with Lewy bodies (DLB). Sources were identified through searches in PubMed and relevant specialty society guidelines, prioritizing recent reviews, clinical frameworks, and empirical studies relevant to the intersection of neurology and palliative care.

Following the literature review, the group engaged in multiple rounds of structured online discussions using a consensus‐building approach. Common clinical scenarios were proposed by movement disorder specialists based on real‐world challenges encountered in outpatient and inpatient neurology settings. These scenarios were refined by the group to reflect typical decision points across the disease course—including diagnosis, routine follow‐up, acute clinical changes, and late‐stage or end‐of‐life care.

Key communication principles were identified and iteratively reviewed by the group, with input from both clinical and educational experts. For each scenario, the team developed practical examples of language and communication strategies designed to align with core palliative care principles. Consensus was reached through serial written feedback, group discussion, and revisions until all members endorsed the final set of recommendations.

General Serious Illness Conversation Principles

Table 1 outlines examples of general communication principles and skills—on which many SIC frameworks are based—that can be helpful in achieving alignment between clinicians and patients/care. ¹⁵ , ¹⁶ Many patients with APD can experience progressive dysarthria, aphasia, apathy, and/or cognitive decline, which may limit their ability to effectively communicate. It is essential to remember that every patient has a “voice,” even when their disease renders that voice difficult to hear or understand. ¹⁷ Care partners are essential members of the care team. They play a pivotal role in the patient's care, offer perspectives that may complement or differ from the patient's, and are themselves at risk of burnout. ¹⁸ Explicitly identifying and discussing patient's values and goals is critical to fostering teamwork and aligning care.

TABLE 1.

General communication principles and skills in serious illness conversation

Communication principles and skills a	Key points	Examples	Further resources
Prepare in Advance Understand the prognosis and treatment options for the specific neurological illness. Create a supportive environment by including important people in the patient's support network	Gives the patient a chance to name and invite their support network. Identifies the most important topics to prioritize in a time‐limited setting	“Is there anyone important in your life whom you would like to join this (or next) conversation?” “Is there anything from your perspective that we should make sure to talk about today (next time we meet)?”	VT: G UIDE SICG: Setup & Assess ACT: Empower re: Values
Ask Permission Use a question to ascertain whether you have permission to broach a potentially difficult topic.	Gives the patient and care partner a sense of control. Orients and/or provides a warning shot to patient and care partner	“Is it okay if we talk about what the future might look like?” “Is it okay if I share what I'm worried about?” If they say no: “Can you tell me more about why?”	VT: G U IDE SICG: Setup & Assess ACT: Empower re: Medical Situation
Pause and Attend When faced with a challenging or emotionally charged question or comment, pause the conversation. Take a breath and allow space for silence—don't rush to fill it.	Gives the patient and care partner and/or other clinicians a moment to process emotion. For clinicians, the pause creates room for empathy and thoughtful response.	Follow up the pause with: “That is such an important question. I am so glad that you asked.” Follow up the pause with: “Tell me more.”	VT: GUI D E SICG: Empathy ACT: Empower & Empathize
Ask–Tell–Ask Align shared knowledge based on the principle of “communication as a two‐way street”	Gives the patient and care partner the opportunity to share their understanding.	Ask: ask what they understand or what they want to know Tell: provide small, bite‐sized, bits of information. Ask: confirm understanding by asking again. Repeat, as necessary.	VT: G UIDE SICG: Assess & Share ACT: Empower & be Explicit
Tell Me More Allow an opportunity to explore what is on a person's mind and to create space for reflection	Allow clinicians to pause, collect their thoughts, and gather more information.	“Tell me more about what big questions are coming up for you right now?”	VT: G U IDE SICG: Assess & Explore ACT: Empower
N‐U‐R‐S‐E Mnemonic for responding to emotion and/or an emotionally laden question: Name Understanding Respect Support Explore	Gives the patient, care partner and/or other clinicians a moment to process emotion	N: “You seem disappointed.” U: “I can't possibly understand how difficult this is for your family.” R: “You have been such a fierce advocate for your father.” S: “Our team is here to support you on this path, no matter what happens.” E: “Could you tell me more about what worries you?”	VT: GUI D E SICG: Empathy ACT: Empathize
The 3 W's: I wish, I worry, I wonder. “I wish” allows for alignment with hope. “I worry” allows counseling while being sensitive. “I wonder” is a way to introduce a recommendation.	Equips clinicians with language for introducing potentially sensitive topics	“I wish that we understood more about these brain diseases, so that we could give you an exact diagnosis.” “I worry that the swallowing issues are a sign that the disease is continuing to progress.” “I wonder if we could talk about what your mother would say, if she heard this information and could tell us her thoughts.”	VT: GUI D E SICG: Empathy, Share, Explore ACT: Empathize, be Explicit re: Medical Situation, Empower re: Values
Reframing Help patients and care partners view a situation from a different, often more constructive, or hopeful perspective—without minimizing the reality of the problem.	Acknowledge the question without shutting it down, then, redirect toward actionable, values‐based care, promoting a sense of agency.	“Does this mean I'm going to die soon?” Clinician (Reframing): “That's such an important question. While I can't give you an exact timeline, what I can tell you is that we're at a point where focusing on your comfort and what matters most to you will really guide how we care for you. Let's talk about what that could look like.”	VT: GUI DE SICG: Empathy, Explore ACT: Empathize re: Values and Plan
Behaviors to avoid
Blocking: The clinician either fails to respond or redirects the conversation to a patient's concerns.
Lecturing: Large chunks of information given, often as a monologue, by the clinician without checking if they were able to absorb the information.
Collusions: An often‐unspoken dynamic in which emotionally charged but important topics are avoided. The clinician withholds difficult information, assuming the patient doesn't want to know, while patient stays silent, assuming that if something were serious, the clinician would bring it up. This mutual avoidance leads to missed opportunities for patient‐centered care and shared decision‐making.
Premature reassurance: Clinician responds to a patient's concern with reassurance before exploring and understanding the concern.

^a These skills are modular and can be utilized during any type of clinical encounter (outpatient, inpatient, home‐based) and any part of a serious illness conversation (initiation, transition from another topic, wrap‐up). VT, Vital Talk, SICG, Serious Illness Conversation Guide (Ariadne Labs), ACT, Advanced Communication Training Program (Table S1).

One of the most important principles of effective communication is alignment—communication as a “two‐way street.” To achieve alignment, start by seeking to understand the perspectives of patients and care partners. Patients and care partners vary widely in health literacy, belief system, and cultural backgrounds. Cultivating a habit of active listening allows the clinicians to understand the patient's story and goals, pick up on nonverbal cues, interpret reactions, and explore what has been left unsaid. Clinicians need to then recognize and acknowledge their own emotions. ¹⁹ Clinicians often experience stress during SICs, citing fears of eliciting intense emotional reactions, being blamed for the bad news, not having all the answers to questions that might arise, and experiencing their own emotions (such as a sense of helplessness). ²⁰ Clinicians also fear that delivering news about a terminal illness will leave a patient depressed, without hope. ²¹ Realism, optimism, and avoidance have been listed as the most common strategies clinicians use in discussing cancer prognosis. ²² Each strategy has the potential of unintended consequences: realism appearing uncaring, but optimism and avoidance coming across as untrustworthy, ²³ and clinicians need to be cognizant of how they are received, as establishing trust is essential.

Common Scenarios along the APD Trajectory

In this section, we discuss specific clinical scenarios in APD where SIC skills are especially beneficial. One key scenario is delivering the diagnosis of APD (Table 2). Many SIC frameworks have focused on the topic of giving a diagnosis of terminal illness, and we will explore how to implement these frameworks in clinical conversations.

TABLE 2.

Examples of How to Give a Diagnosis of Atypical Parkinsonian Disorders (APD) using the “S‐P‐I‐K‐E‐S” Model

SPIKE	Key points	Examples
Setting (S)	Quiet room, maintain eye contact, invite care partner as desired	“Before we review results, is there anybody else who you would like to include in this discussion?”
Perception (P)	Use open‐ended questions to ascertain patient's understanding and misconception	“What is your understanding of the diagnosis?” “What is your understanding of where we are, in the diagnostic process?”
Invitation (I)	Determine how much information patient desires and ask permission to discuss diagnosis	“I'm going to start with an overview and then give you as much, or as little, detail as makes sense. Let me know anytime if you need more detail, if you don't understand what I am saying, or if you need a break, ok?” “Is it okay if I start discussing my assessment?”
Knowledge (K)	Use language that patient understands, stop often to confirm understanding	“I am worried that this is not what we would expect to see with Parkinson's, which means we might be looking at a different diagnosis.” “Based on your story, exam, and tests, the diagnosis is most likely a related, but more severe, disease (PSP, MSA, CBS or DLB).” “A change in diagnosis can feel confusing, but it's not uncommon for the diagnosis to become clearer over time as your clinical picture evolves.” “Symptoms often progress gradually, and sometimes, it can take time for the full picture to emerge.” Pause to allow the patient and care partner to digest and then provide additional details as co‐directed by the patient/care partner.
Emotions (E)	Stop, address, validate as emotion arises, use open ended question to explore	“I can only imagine that “overwhelming” barely even scratches the surface of how terrible this is for you and your family.” “It can be really confusing—and even frustrating—when the diagnosis seems to change over time. You're not alone feeling that way. Unfortunately, with conditions like this, it's actually quite common. The symptoms often evolve slowly, and sometimes it takes time for the full picture to come clear.” “Even though this wasn't what you were hoping to hear, our team is here to walk this path with you.” “You might have a lot going on in your head—do you mind sharing how you are feeling?”
Strategy/ Summary (S)	Summarize news, set plan	“I know this has been a lot of information. I'm sure you will have more questions after you've had a chance to think it all through. Let's set up a time to explore them in a follow up meeting.” “While there is no cure, our team is committed to supporting you and your family no matter what may come.”

Less well‐defined, however, is how to communicate effectively throughout the broader disease trajectory. Patients and care partners may ask emotionally charged questions related to prognosis, such as—“How long do I have?” “Can I still drive?” and “When will I need to go to a nursing home?”—These questions can arise during a routine follow‐up or in the aftermath of an acute change in health status. Rather than organizing scenarios by a strict clinical timeline, we have grouped them thematically, as these themes recur across various stages of the illness and offer broad clinical relevance.

• Table 3: Eliciting Goals: Focuses on aligning care with patient values, especially in situations like after hospitalization or the onset of dysphagia.

• Table 4: Addressing Safety Concerns: Provides strategies to help patients maintain function and minimize risks as neurologic symptoms progress.

• Table 5: Supporting Quality of Life and End‐of‐Life Needs: Addresses themes of acceptance, meaning, and peace. While these conversations often occur later in the disease, they may be relevant earlier, depending on individual context.

TABLE 3.

Conversation Primer for Eliciting Goals in Atypical Parkinsonian Disorders (APD)

Scenarios	Key Points	Examples
Questions about Prognosis: “How much time do I have?” “How long can someone live like this?” “What can I expect for the future?”	Acknowledge and validate the patient's concerns about the future. Address the question directly and honestly while being sensitive to emotional distress. Ask permission before discussing prognosis. Provide life expectancy in broad time ranges rather than precise numbers. Emphasize continued support and non‐abandonment.	“That's a good question. I can see how difficult it is to live with so much uncertainty. Tell me more about what's concerning you.” “This disease is quite rare and there is wide variability in how long someone can live with it. Is this something that everyone in the room wants to discuss?” If they express desire to hear life‐expectancy: “Based on how long you have had this disease and how fast it progressed, I anticipate you may have [provide range: days to weeks, weeks to months, months to a few years, or less than X years]. I will continue to be honest with you and discuss changes as we walk this journey together.”
Complications resulting in hospitalization (eg, urinary tract infection, aspiration pneumonia, sepsis, fall, hip fracture, constipation, dehydration, etc.)	Acknowledge the decline and a new baseline. Recognize that such complications are expected in the progression of APD. Use this as an opportunity to explore how goals may have shifted.	“We're in a different place now.” “I'm wondering if now may be a good time to discuss what's ahead?” “When people with APD have complications like this, this is often a sign of disease progression. Recovery from a hospital stay can take a long time, and I worry that this may result in a new lower baseline of function overall.” “If you were to get sicker, what are your most important goals? Are there any interventions that you would not want to experience again?”
Dysphagia and signs of aspiration: “My swallow is worsening, and I am losing weight. When should I have a feeding tube placed?”	Evaluate appropriateness of feeding tube: If dysphagia is an early sign, feeding tube may enhance quality of life. If dysphagia occurs late in the disease with cognitive changes, it is unlikely to enhance quality of life or prolong survival. Recommend hand feeding, pleasure feeds, and safe swallowing techniques recommended by speech therapy. When proceeding with feeding tube, determine the goals (eg, weight gain, shorter mealtimes, etc.) AND establish a timeline to re‐evaluate if the goals are met.	If dysphagia occurs in early to moderate stage and feeding tube may be beneficial: “Your swallow function appears to be getting weaker, which affects your nutrition and overall function. What are your thoughts about a feeding tube?” If dysphagia occurs in an advanced‐stage disease: “I worry that a weaker swallow is a sign of disease progression. I wish feeding tubes could prolong survival and improve quality of life, but studies have shown that in this scenario, that is not the case. In fact, feeding tubes may cause more discomfort. Instead, we suggest pleasure feeding—that way, your husband will still be able to enjoy the texture of the food.” A decision to proceed with tube feeing was made: “Sounds like you have decided to proceed with a feeding tube, with the hope that it will help you gain weight and give you more energy. I recommend we re‐evaluate in a few months whether your goals are met”
Advance Care Planning: Mostly introduced by clinicians; may be brought up by patients.	Introduce documentation that helps express their healthcare wishes (Health Care Power of Attorney, Living Will, POLST/MOLST/MOST a forms, Code status). Incorporate the patient's goals (quality of life, physical function, cognitive function) into the discussion about recommended interventions. Ideally, discuss before a crisis occurs when the patient is clinically stable. Since goals and wishes may change over time, revisit this yearly to ensure their advance care plans (and forms) are aligned with their current goals.	Introducing the concept: “You may need assistance in the future with making complex healthcare decisions. Have you thought about who you would want to make medical decisions on your behalf if you weren't able to?” “In addition to choosing your health care power of attorney, it can be a gift to provide them with a road map of medical interventions you would want or want to avoid, formalizing your wishes.” “An example of this is whether you would want chest compression or be on a breathing machine. Would it be ok if we talk through these decisions?” If you believe recommending a DNR/DNI is appropriate: “Given how advanced your condition is, if your heart were to stop, I worry that interventions like chest compressions and breathing machines may prolong suffering. Given your goal of being comfortable at the end of life, I recommend that when your heart stops, we view that as the end of your life, allowing you to pass gently. Would you like additional time to think through these options?” If they agree with your recommendation of DNR/DNI: “We recommend formalizing this by signing this form, which ensures that your wishes are respected.” If they do not agree with your recommendation of DNR/DNI: “It sounds like you want these interventions if you were dying. Can you share what you are hoping for? [Listen to their concerns and hopes]. While these interventions might help you live longer, I worry that they may potentially prolong suffering. My goal is to ensure you receive care that aligns with your values and priorities.”

^a POLST = Physician Orders for Life Sustaining Treatment, MOST = Medical Orders for Scope of Treatment, MOLST = Medical Orders for Life‐Sustaining Treatment, DNR = Do Not Resuscitate, DNI = Do not Intubate.

TABLE 4.

Conversation Primer for Discussing Safety Concerns in Atypical Parkinsonian Disorders (APD)

Scenarios	Key Points	Examples
Fall Risk and Introduction of Assistive Device: A Patient and care partner report multiple falls at home but are hesitant to use an assistive device.	Acknowledge the patient's desire for independence and align it with your recommendations. Emphasize how preventing falls can help maintain independence in the long run. Explain the potential consequences of falls and how assistive devices can enhance safety and mobility.	“I'd like to understand more about what maintaining your independence means to you.” “I am worried that your balance is not as stable as it used to be. Many people with APD have falls, which can often lead to serious injuries and hospital stays. This can make it much harder to stay independent and speed up overall decline.” “Using the walker actually may help you with activities that are becoming harder, such as getting to church.”
Safety concerns (eg, driving cessation, gun safety, medication adherence, etc.): Care partner shares a recent incident of patient getting lost while driving or experiencing a near accident.	Reflect on what the patient has shared with you about their relationship with driving. Validate the emotional difficulties adjusting to the change. Assess whether your patient can continue to engage in driving safely with limitations. Offer appropriate resources and support (eg, a formal driving evaluation).	“You shared with us how much you enjoy driving and how important it is for you to be independent, and I want to acknowledge how difficult this must be. At the same time, I am concerned this disease is causing changes in your memory and judgment which puts the safety of you and those around you at risk.” “To better understand your driving abilities, I strongly recommend that you undergo a formal driving evaluation. If it is no longer safe for you to drive, we can connect you with transportation resources to find alternative options. I acknowledge this isn't what you want to hear.”
Impulsivity (particularly in PSP and CBS): Care partners share concerns that the patient repeatedly forgets to use the assistive device while walking at home, increasing their risk for falls.	Validate care partner's concern and empathize with them on how challenging this symptom can be. Frame this situation in a way that reassures the patient—it is the disease that is failing them, not that they are failing to follow directions. Emphasize the need for repetition, increased supervision, and additional safety measures. Collaborate on practical strategies (eg, environmental modifications, scheduled verbal reminders, and assistive devices with alarms or automatic reminders, etc.)	“I can see how frustrating this is for both of you. It's important to remember that this isn't about purposely not following directions—the impulsivity caused by your PSP is making it harder for you to remember and ask for help in the moment.” “In addition to medication adjustments, we recommend working with a physical therapist to train you in using assistive devices like a chair alarm and gait belt.” To care partner: “When it comes to APD, a common concern for care partner is the repetitive need to remind and cue their loved one. This is not easy and can often feel exhausting and frustrating. Some care partners have found it helpful to remind themselves that this behavior is caused by the disease and not a deliberate choice made by their partner.”
Role change: Patient or care‐partner shares concerns about poor management of finances related to cognitive decline. Other scenarios include a patient who previously cared for others is now the recipient of care.	Acknowledge the emotional and practical impact of role changes. Response may need to be more direct, depending on how urgently the role change needs to take effect and/or the level of patient's insight. Reframe and bring attention to patient's goals (eg, protecting financial assets, maintaining being safely cared for in the home, etc.)	If there is time for a gradual change: “From what you have shared with me; this disease is causing changes in your thinking and judgment. I believe it may be time to ask for help managing your finances. Have you thought about who might be able to assist you with this?” If an urgent role change is necessary, or if the patient has limited insight: “It's time for someone else to take over managing your finances to protect your assets.” “Our hope is that with more support in managing your finances, your assets can remain secure for you and your family to continue to benefit from in the future.” For patients transitioning from caregiver to care recipient: “You have spent so much of your life taking care of others so stepping back can be difficult. This disease is making things more challenging for you, and I want to make sure you are also receiving the care and support you deserve.”

TABLE 5.

Conversation Primer for Discussing Quality of Life/End of Life in Atypical Parkinsonian Disorders (APD)

Scenarios	Key Points	Examples
Difficulty coping with and accepting diagnosis of a progressive terminal condition (eg, anxiety about uncertainty of future, grieving the loss of what they were expecting for their future, adapting to role changes, etc.)	Ask to elaborate on their specific challenges and clarify their emotional needs. Offer support by validating their emotions. Encourage them to connect with what gives them joy and meaning. Acknowledge that engaging in the activity looks different now. Brainstorm with them on adaptations. Connect them with interdisciplinary team members and/or community resources	“I can see this adjustment has been difficult. Can you share with me what has been most difficult for you?” “From what you have shared with me; it sounds like you are grieving (Naming) what you expected your future to look like. This is normal and unbelievably hard.” “You have shared with me in the past that you love to golf with your buddies. How do you feel about still going out with them in the golf cart?” “We have several resources to help you continue to process this emotional loss and help you plan for the future.”
Specialist Palliative Care referral: A patient shares that their quality of life has been significantly impacted by the disease. Care partner is experiencing significant care burden. Both express being open to additional support.	Introduce and define the role of a palliative care specialist. Emphasize the support they provide in living well rather than solely focusing on the end of life. Incorporate their goals into the discussion and explain how a palliative specialist can support these goals.	“You mentioned a few things today that are impacting your quality of life. I'd like to refer you to our palliative care colleagues who can work closely with you to optimize your quality of life.” “I am not recommending a consultation with palliative care because I think you are dying. Palliative care specialists support people with APD at any stage of their condition. This may include addressing physical symptoms that we have not addressed, providing emotional and psychological support, and helping you to further define your goals and wishes as your disease progresses.”
Hospice Referral: Patient's mobility has declined to the point of needing around‐the‐clock supervision. Care partner express significant care burden. Patient expresses an interest in limiting interventions and focusing more on comfort.	Introduce hospice philosophy and define the role of hospice care at this stage of their disease. Emphasize how hospice services can provide an extra layer of support in optimizing comfort as they approach the end of life. Incorporate the patient's and care partner's goals from discussion and explain how hospice aligns with their wishes.	“I'm worried that your disease is advancing, and your body is showing signs of decline (give examples). While it is hard to predict how much time is left, I'm worried that time is shorter than we would have hoped, possibly in the order of months (adjust the time frame accordingly). Would it be okay to discuss a referral that might benefit you?” “Hospice service provides various types of support. Their services include home nursing support for symptom management and troubleshooting, durable medical equipment, personal care support, spiritual support, social work services, and after‐hours crisis support, all of which are typically covered by your insurance benefit.”
Request for hastened Death: “This is too hard on me and my family to see my body failing. Can we speed this up? I don't want to lose more than I already have.” “I've heard of Death with Dignity in certain states and I'm considering this when my situation becomes unbearable. Can you help me?”	Take a moment to reflect on your own feelings about their request for hastened death. Even if you aren't in favor of the decision they are considering, you can still support your patient by exploring their request, attuning to their suffering and connecting them to resources. Validate their concerns and their courage to ask. Clarify their request. Are they asking about the prognosis? Are they passively suicidal? Are they asking about interventions like Medical‐Aid‐In‐Dying (MAID) or other interventions that hasten death? Are they asking for your assistance with these interventions right now or in the future? Note that there are many phrases for MAID including Death with Dignity and Physician Assisted Death. Avoid the phrase Physician Assisted Suicide. Be clear in explaining your role in what you are and are not able to do. Express non‐abandonment. Debrief the encounter and your emotional reactions with trusted colleagues.	“Tell me more about what you mean by ‘speeding this up’?” “Can you tell me more about how you have been thinking about the end‐of‐life? “I am sorry to hear you are suffering so greatly. (pause)” If comfortable (both morally and with the specifics): share what MAID is, basic eligibility criteria, and the current legislation in your area. If not knowledgeable about specifics: “I am not as experienced with the MAID process and would like to refer you to a colleague who has expertise in MAID and additional end‐of‐life options. Regardless of how you decide to proceed, our team will continue to be available.” If morally opposed to MAID (and/or in a jurisdiction where it is not legal): “This is a challenging topic for many. While I am not personally able to take part in MAID, there are many resources online that are easily accessible. I promise that I will never abandon you, though there are paths some patients choose to walk that I simply cannot follow.”

Research shows that the emotional journey of patients and care partners often does not mirror the clinical trajectory. ³ A patient may seem emotionally unaffected during significant health declines—simply because they need time to process and adjust. Conversely, they may be experiencing a deep sense of loss while confronting morality and the prospect of irreversible decline even during a relatively routine follow‐up visit. Recognizing their emotional journey, in addition to the clinical trajectory, is critical.

Delivering a Diagnosis of APD

Delivering serious, life‐altering news to a patient is one of the most difficult tasks clinicians encounter. By the time patients receive the diagnosis of an APD, they have frequently spent 2–3 years navigating multiple tests, clinicians, and incorrect diagnoses, ²⁴ which can result in frustration, anxiety, mistrust, and other negative emotions even before the initial consultation.

Patients with PSP and their care partners commonly reported that they do not receive sufficient information at the time of diagnosis, particularly around disease progression and care needs. ³ Negative emotions are common after a life‐changing diagnosis and may inhibit information retention. ²⁵ Compared to cancer diagnosis, which are often pathologically confirmed, the diagnostic uncertainty surrounding APD can make delivering the diagnosis even more complex. ²⁶ Much of the literature on breaking bad news originated from oncology, and these approaches have since been applied across other diagnostic settings. Several frameworks have been proposed for delivering difficult news, including SPIKES, ²⁷ ABCDE, ²⁸ BREAK, ²⁸ MVP. ²⁹ Adaptation of the SPIKES model and how to deliver a PD diagnosis with compassion and sensitivity have been highlighted as important topics in PD care. ²⁵ , ³⁰ We recommend that this model be considered when giving the diagnosis of APD (Table 2). Neurologists may find it challenging to “change” the diagnosis from PD to APD. An example of how to approach this conversation with empathy and respect is also included in Table 2. Research shows that patients desire honesty, simple and clear language that they can understand, and adequate time for questions. ³¹ Patients and care partners may not retain what has been explained in the initial encounter; it may be helpful to schedule a follow‐up in short order to address questions that may arise after the initial diagnosis. This may be challenging, whether in an academic center where specialists have long wait times for visits or in the fast‐paced environment of private practice. A team‐based model—including APPs, nurses, social workers, and other allied healthcare professionals—can help bridge this gap by providing timely, supportive follow‐up care. Providing disease‐specific material, community resources, and information on patient support and advocacy organizations can be helpful in several ways: they enhance understanding of the disease process, offer emotional support through peer connection, facilitate access to expert care, clinical trials and registries, and empower patients and their care partners in advocacy and self‐management efforts. ³²

Routine Visit

It takes time to build an understanding of the APD diagnosis and its impact. Clinicians need to repeatedly inquire with patients and care partners about their understanding of the disease and their evolving needs. Emotional integration of serious illness is often a bumpy, oscillating process that involves conflicting, intense emotions. ¹⁰ In the face of rapidly progressing disease, new symptoms may arise.

Balancing a message of hope in the face of advancing disease while being realistic can be challenging. Clinicians can encourage them to focus on what they can control: exercise (within their limitations), establishing a daily routine, physical therapy, occupational therapy, and speech therapy with guidance from physical medicine and rehabilitation (PMR) specialists.

Patients and care partners may not know what to ask, and desire “anticipatory guidance”—a proactive communication strategy where clinicians give timely, relevant information about what to expect as a progressive illness unfolds. It helps prepare them—emotionally, practically, and medically—for upcoming changes in health, function, and decision‐making. ³³ In addition to addressing medical needs, clinicians need to be proactive in recommending additional logistical/practical support, such as involvement of a mental health expert, social work services etc., and to assess caregiver well‐being and burden at each visit. Clinicians can normalize concerns and offer helpful prompts, such as: “Some patients in your situation ask about what to expect if their balance gets worse, or if they start choking.” By offering these entry points, clinicians can take the burden off families to generate difficult questions in the moment, and create space for more meaningful dialogue, leading to patient‐centered care and shared decision making.

A challenge that has become common in the internet age is patients and care partners focusing, sometimes to the point of distraction, on treatment options that lack sufficient evidence. Among these are “off label” medications, devices, supplements, and alternative medicine. While answering such questions directly is important, we can explore the underlying motivations driving these questions, which may include longing for a sense of control, fear of the unknown and/or avoiding confrontation of their eventual mortality. We can address the various aspects of these questions by utilizing the NURSE framework, asking open‐ended clarifying questions, and helping to reframe questions to understand their larger goals (eg, being with family, safety, quality of life) (Table 1). Explaining the lack of evidence in an empathetic way, clarifying their “big picture” priorities and asking about symptoms which are most troublesome can help them spend their time and resources in ways that align to their priorities, and may also help reinforce trust with a sense that their concerns were heard.

Acute Changes and Changes of Goals

Acute changes in clinical status are common in PD and APD, especially in the latter part of the disease course. In a study assessing the last year of health care utilization in both PD and APD patients, over half of the patients had at least one emergency department (ED) visit or hospitalization. ³⁴ Patients with APD experience acute changes from falls, medical complications (dehydration, infections, stroke, cardiac conditions), and fluctuations in their status due to limited neurological reserve (mental status changes, especially in DLB, transient weakness), and disease progression. ³⁵ To help mitigate unnecessary hospitalizations and distress, care strategies should include a system for ongoing communication between the neurology team and patients/care partners, allowing prompt response to emerging concerns. Tools such as a “What to do if…” resources—a proactive, written guide—for example, a hospital card that includes contact information of the outpatient team members, can help patients and care partners know what to do in common or urgent situations that may arise during the course of a serious illness.

Discussing prognosis—especially in the face of significant uncertainty—is inherently challenging. A few published frameworks offer guidance,

• REMAP ³⁶ : Reframe, Expect emotion, Map out patient goals, Align with goals, and Propose a plan—oncology

• SAFE‐GOALS ³⁷ : Set up, Acknowledgment, Family understanding, Events of hospital course, Get to know the patient, Options, Active listening and discussion, Steps going forward from intensive care.

Both frameworks reflect the same core principles we've outlined in this paper: honest communication, goal alignment, and emotional support.

We recommend iterative, value‐based discussions about goals of care, as these often shift over time due to changes in disease status, comorbidities, and family circumstances. A common transition is a shift from prioritizing longevity to focusing on quality of life, peace, and comfort. Clinicians play a key role in supporting this shift by naming evolving goals, validating the patient's and care partner's experiences, and proposing a care plan aligned with their values.

One of the most challenging scenarios—particularly for clinicians who do not specialize in palliative care—is when a patient requests assistance with dying. We recommend approaching this with the same compassionate communication framework used for other sensitive discussions. In such moments, it is especially important for clinicians to pause and reflect on their own feelings about the request. Each clinician brings a different level of comfort—both moral and practical—regarding Medical Aid in Dying (MAID). ³⁸ MAID is legal in several European, Oceanic, and South American countries, as well as in Canada, and in select US states. Specific laws, medical guidelines, and regulations vary significantly across jurisdictions. While the specifics of MAID are beyond the scope of this paper, numerous publications explore this topic in depth. ³⁹ Regardless of one's personal beliefs, patients may raise questions about MAID. Clinicians can offer meaningful and compassionate support by exploring their concerns, validating their suffering, and connecting them with appropriate resources.

Future Research

This guide was developed through the identification of common clinical scenarios encountered by clinicians caring for individuals with APD, complemented by insights from neuropalliative care and communication experts. While it provides a practical foundation for SIC in this population, there are many opportunities to expand the evidence base and improve care.

A key opportunity lies in enhancing our understanding of the natural history, life expectancy, and prognostic trajectories in APD. More accurate and accessible prognostic information will support clinicians and families in navigating uncertainty and making timely, value‐aligned decisions. Closely related is the opportunity to clarify when to initiate SIC throughout the disease course. Establishing optimal timing—whether around diagnosis, during major transitions, or after acute changes—would help ensure that patients and care partners are prepared for what lies ahead.

There is also significant potential to develop and validate communication models that are tailored to the specific needs of people with APD. Frameworks adapted for conversations around diagnosis, prognosis, and end‐of‐life decision‐making could improve consistency and quality in communication across settings and disciplines. Further, evaluating the outcomes associated with SIC—such as effects on quality of life, caregiver burden, healthcare utilization, and cost—could strengthen the case for broader integration of these practices.

Defining the roles of various members of the healthcare team in delivering SIC represents another opportunity for system‐level improvement. Identifying who is best positioned to lead these conversations, and how to train and support them effectively, could enhance communication workflows and reduce missed opportunities for engagement.

As care partners often play a vital role in APD management, developing approaches that promote their inclusion in communication—while also supporting conflict resolution when needed—could improve alignment and reduce distress. Similarly, advancing best practices for delivering anticipatory guidance would allow clinicians to better prepare patients and care partners for expected changes, without overwhelming them.

Effectively balancing messages of hope with clinical realism remains a nuanced communication skill that would benefit from further research and refinement. In particular, there is a clear opportunity to improve how clinicians communicate prognostic uncertainty, especially when timelines are variable, or disease trajectories are less predictable. Developing language frameworks and teaching strategies for navigating these discussions with clarity and compassion is essential.

Additionally, adapting communication strategies to better serve diverse populations—considering differences in health literacy, cultural background, and language—presents a vital opportunity to improve equity in serious illness care.

There is also growing interest in improving prognostication through clinical indicators and biomarkers that are specific to APD. Progress in this area would greatly inform care planning and advance directive discussions. Finally, the development of validated criteria or tools to support timely and appropriate hospice referral in APD would address a longstanding need and ensure that patients receive the full benefits of palliative care services at the right time.

Competency Development and Training Resources

Effective communication around serious illness is increasingly recognized as a core clinical skill, yet formal training in this area remains limited, particularly in neurology. Under the Accreditation Council for Graduate Medical Education (ACGME) in the US, key milestones intersecting with this domain include Interpersonal and Communication Skills (eg, communicating effectively with patients and families across a broad range of clinical contexts), Professionalism (eg, demonstrating compassion, integrity, and respect), and Patient Care (eg, incorporating patient values into clinical decision‐making). ⁴⁰ Despite the recognition of SIC skills within the core competencies, effective implementation of SIC familiarity and mastery across the field remains incomplete. Promoting structured approaches to SIC within neurology is therefore an ongoing, multipronged approach: introducing SIC principles with structured communication training to trainees at the residency and fellowship level, providing midcareer neurologists with ample access to communication training resources and courses, developing future neuropalliative specialists (eg, neurologists with expertise in hospice and palliative medicine) to spearhead educational practices and explore the salient aforementioned research opportunities.

For interested readers, we will provide a list of available SIC training resources in the Table S1.

Conclusion

Patients and their care partners living with APD benefit greatly from individualized guidance, and honest, empathic communication is one of the most essential and effective tools to achieve patient‐centered care and shared decision making. In this communication guide, we propose that existing SIC frameworks offer invaluable guidance for clinicians serving this vulnerable community. We encourage further research to explore how SIC can be best adapted for APD care—specifically, by improving prognostication, identifying best timing and which specific framework of SIC to utilize with relevant outcome measures, and education strategies to build team‐wide competency. In addition, how best to utilize SIC to support care partners, and the needs of diverse populations to ensure equitable, timely, and person‐centered care need to be further explored.

Author Roles

(1) Research project: A. Conception, B. Organization, C. Execution; (2) Statistical Analysis: A. Design, B. Execution, C. Review and Critique; (3) Manuscript Preparation: A. Writing of the first draft, B. Review and Critique.

M.K.B.: 1A, 1B, 1C, 3A, 3B.

J.J.: 1B, 1C, 3B.

N.M.K.: 1C, 3B.

M.I.: 1C, 3B.

C.C.: 3B.

J.S.: 1A, 1B, 3B.

T.C.: 1C, 3B.

Disclosures

Ethical Compliance Statement: Institutional review board approval was not necessary for this educational review. Informed patient consent was not necessary for this work. We confirm that all authors have read the Journal's position on issues involved in ethical publication and affirm that this work is consistent with those guidelines.

Funding Sources and Conflict of Interest: No specific funding was received for this work. None of the authors have conflicts of interest to disclose.

Financial Disclosures for the previous 12 months: MKB received research grant from Michael J. Fox Foundation, Parkinson's Foundation and Center for Pacific Innovation Knowledge and Opportunities (PIKO), not related to this work. JJ received funding from CurePSP, Stanford Center for Continuing Medical Education, and the Stanford Medicine Palliative Care Center for Excellence for projects not related to this work. NMK declares that there are no additional disclosures to report. MI declares that there are no additional disclosures to report. CC declares that there are no additional disclosures to report. JS declares that there are no additional disclosures to report. TC declares that there are no additional disclosures to report.

Supporting information

TABLE S1. Supplemental Table summarizing Communication Training Resources.

Appendix A.

Members of the Cure PSP Centers of Care Palliative Care Working Group:

Michiko K. Bruno, Jocelyn Jiao, Neha M. Kramer, Margaret Ivancic, Claudia Chou, Jessica Shurer.

Michiko K. Bruno MD¹, Jocelyn Jiao MD, MS², Neha M. Kramer MD³, Margaret Ivancic, MSW, LCSW⁴, Claudia Chou MD⁵, Jessica Shurer, MSW, LCSW⁶.

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.