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Effective Treatments for Patients Near the End of Life

Effective Treatments for Patients Near the End of Life
Amanda Stead, PhD, CCC-SLP
May 31, 2024

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Editor's Note: This text is an edited transcript of the course Effective Treatments for Patients Near the End of Life presented by Amanda Stead, PhD, CCC-SLP.

Learning Outcomes

After this course, participants will be able to:

  • Describe patients' goals nearing the end of life.
  • Identify evidence-based communication treatments to support patient participation near the end of life.
  • Describe evidence-based interventions to address eating, drinking, and swallowing difficulties near the end of life.

Patient Goals at the End

I appreciate the opportunity to talk about this topic, as I am very passionate about serving this population. We'll start by discussing patients' goals at the end of life. This conversation can help us refocus on our outcomes and remind us of their extraordinary value at this moment.

In end-of-life care, we recognize that death is a formative event in human existence, deserving our full care. We offer patients the opportunity to achieve what is colloquially called a "good death." It's important to center these goals around emotional well-being, even if it may seem challenging given the situation.

In end-of-life care, patients and families seek psychological comfort, the opportunity to say goodbye, reduced fear, and closure. Our interventions must help patients envision what completion looks like and reduce their suffering. Additionally, we should maximize family support and guide patients and families toward acceptance, allowing them to focus on grief rather than just medical decisions.

It is paramount to help patients and families conceptualize treatment and have decision-making choices in medical care. The rates of documentation and care plans for end-of-life care are much lower than desired, leading many people to enter this stage without clear documentation of their preferences or who should communicate them. This lack of preparation is problematic for various reasons, as many of you can understand from personal experience.

Patients want to know that available and reasonable treatments were offered to them and believe they had the opportunity to take advantage of these options. They also desire control over their treatment, whether through direct decision-making or by designating someone to make medical decisions on their behalf. Additionally, many people are concerned about the costs and the financial ramifications for their families, which is unsurprising given our healthcare system.

There's a statistic I often use when teaching about end-of-life care: 30% of families are impoverished through the dying process. This daunting statistic highlights the importance of considering how financial concerns intersect with patients' choices and preferences at the end of life.

The Five Wishes (Kuebler, Berry, & Heidrich, 2002)

There's this amazing document called the Five Wishes, which focuses on end-of-life documentation. When patients consider moving into end-of-life care, they think about what to include in an advance directive, what to communicate to others, and what they want documented in their medical chart. This is all from the patient's perspective, reflecting what they tell us they want.

Patients want to choose a person to make decisions if they cannot do so themselves. They also want to specify the types of treatments they do and do not want. There's a lot of nuance here, as patients and families need to fully understand the treatments, their ramifications, and potential detriments. This is an area where we have significant opportunities to support how comfortable someone wants to be.

When I first read the Five Wishes, I thought, who doesn't want to be comfortable? However, our practice shows there's a relationship between pain management, the location of care, and comfort—whether physical, psychological, or emotional. Often, there can be trade-offs. Patients who receive heavy levels of pain management, something they clearly desire to avoid pain and suffering, may experience reduced alertness and limited ability to participate in family activities and daily existence. This highlights the importance of understanding patients' preferences.

Additionally, we need to know how patients want to be treated. From my experience in end-of-life care, and likely yours, some patients prefer to defer all decisions to others, while others want to remain fully involved in their care, even when facing significant physical or cognitive challenges.

A crucial aspect of documentation is understanding what patients want others to know and what they wish to communicate during this moment.

Communication

Another important aspect of the end-of-life experience is that patients want the ability to communicate about their own bodies. They want to report changes in status, such as feeling dizzy, sick, nauseous, constipated, or unusually tired. While the death and dying process often causes these symptoms, reporting them remains essential because they can impact function. Patients need the ability to express when they feel particularly unwell, need extra support, or experience new, uncomfortable symptoms.

Patients also want to understand information from their providers. This is not surprising, but we know providers are not always effective at explaining things or ensuring understanding. Statistics show that only about 25% of what we communicate is truly internalized and understood by patients. Additionally, providers often fail to recognize when they're using jargon. Even words we consider non-jargon or simpler versions of technical terms can still be jargon to patients. Health literacy is crucial in this context, ensuring that patients fully understand their condition and care options.

We also know patients want to be able to request basic care needs, such as more pain management, assistance with using the restroom, help with repositioning, and accommodations for hunger, thirst, or dietary preferences.

Engaging in meaningful social interaction is paramount for many patients at the end of life. They desire communication not only with medical providers but also with their families, friends, colleagues, and spiritual advisors.

Participation in advanced care planning is another significant aspect. Patients who enter end-of-life care without much documentation often want to discuss wills, trusts, inheritances, and their preferences for what happens next.

Additionally, having conversations related to personal spiritual practices is critical. While there can sometimes be a perceived boundary between faith practices and medical intervention, the involvement of chaplains in palliative and hospice care underscores the importance of supporting spiritual practices. This aspect of care is highly prevalent and needs to be met and supported through our interventions.

Lastly, many patients wish to plan end-of-life celebrations, considering how they want things handled. Engaging in such tasks can provide a sense of control over an otherwise uncontrollable process.

Why SLPs?

Why are SLPs having this conversation? This is often a significant medical moment for many families, and SLPs can sometimes be relegated to the periphery. However, the symptoms that patients exhibit during the pre-active and active dying phases significantly affect communication and quality of life, making it our business.

Patients near the end of life often experience impaired communication and cognition due to the various changes occurring in their brain and body. This impairment happens even before considering the primary reason for end-of-life care. These changes naturally arise as the body transitions into the dying process. Even individuals without previous diagnoses related to speech communication, eating, drinking, or swallowing may suddenly encounter these issues.

A common example is cancer patients. Even cancers affecting body systems not typically under the speech-language pathologist's purview can lead to declines in function that impact communication, cognition, eating, drinking, and swallowing.

We know that patients with poor communication abilities often struggle to participate in their medical decisions. Their capacity is frequently impacted or questioned due to these communication challenges. As previously discussed, patients want to say goodbye and be social, emphasizing why this is our business.

Through our efforts and interventions, SLPs play a crucial role in supporting communication for both socialization and medical decision-making. Allied health professionals, including speech pathologists, often have more contact time or slightly longer increments with patients compared to primary medical providers. This increased time allows us to establish a different level of relationship with our patients.

This closer relationship gives us deeper insights into family dynamics, patient preferences, values, expectations, and their understanding of their situation.

We are uniquely positioned to provide significant support and enhance the quality of life at the end of life. Our proximity to patients and our specialized skill set enable us to assist in decision-making processes, not only related to communication but also in areas like nutrition, hydration, and other needs. We can help augment and support communication barriers so that patients' decisions are honored and respected.

As specialists in communication and cognition, we can assist patients and families in end-of-life planning and documentation. Acting as a bridge of support is essential for quality end-of-life care. This ensures that patients get what they want, understand what they are asking for, comprehend the ramifications, and have their needs met.

Here are some of the challenges we face. Referrals for hospice and palliative care often occur too late or not at all. By the time we identify patients at the end of life, they are frequently very close to the final stages. As a medical community, we tend to focus on core physical and psychosocial needs without always providing the necessary support services that enhance quality of life.

Time constraints are a significant barrier. When a patient is actively dying, we don't have the luxury of days or weeks to conduct thorough assessments and interventions, especially with high caseloads. The gap between referral and visit time in some settings is too long to be effective.

The biggest problem is the lack of awareness and understanding of our role. We need to advocate for our services, educating the community and other medical professionals about how we can support patients and families. Despite our long-standing presence and our work with various patients, service referrals to us are often not initiated. Other medical professionals may not fully understand our role in supporting communication and cognition. We do receive some referrals for dysphagia, but this is not enough.

There is also a learned helplessness when it comes to dying patients. We often prioritize patients who might recover over those who are nearing the end of life, which can sound cold but reflects a common practice. We must demonstrate the critical importance and benefits of our services for end-of-life care, advocating at both national and local levels.

Starting with top-down advocacy is important, but local advocacy is more effective. By communicating, building alliances, gradually increasing referrals, and demonstrating our effectiveness, we can begin to change practice. While dysphagia referrals are more common, we also need to show how we can support communication and cognitive needs. Many barriers exist, but we can overcome them through persistent effort and advocacy.

Assessment for Patients Near the EoL

One of the things we need to conceptualize is the relationship between assessment, documentation, and lack of time. We need to ask ourselves, what are we actually looking for, and what are we trying to address? Understanding that we are not rehabbing at the end of life can help us focus on what is essential at this moment.

When working with critically ill patients, the timing of assessments is important, though we don't always get to choose it. We must consider the patient's alertness, pain status, and medication effects. If possible, we should try to catch our patients at a time when they can best demonstrate their abilities. Given the relationship between pain management and its sedative effects, it is important to document our understanding of the patient's medication schedule and pain management. This transparency in documentation helps provide a clear picture of the patient's situation and the context of our assessments.

Not surprisingly, we want the environment to be as quiet as possible—mute everything. This can be challenging in hospital settings, but reducing ambient noise is so important, given its cognitive and communication impacts.

It's helpful to have allies such as caregivers, family, or friends to help fill in some of the gaps. However, it's also important to avoid having too many people present at once. A balanced approach ensures the patient has the support they need without overwhelming them.

We want to get patients in a position where they can effectively participate in an assessment, which can be challenging. Consider whether they can sit up, how they fare on their side, and any other medical issues they might have. For evaluations related to feeding or dysphagia, it's important to authentically assess what the patient is eating, what they are being offered, and what their preferences and available options are.

A significant challenge in eating, drinking, and swallowing assessments is the contrived nature of the food and drink offerings during evaluations. We must also recognize the role of food and drink practices. Families often associate food with comfort, which frequently appears in the eating space, even when it might be difficult for the patient.

It's crucial not to deny patients food that is highly preferred, culturally valuable, or highly desired. At the same time, we need to maximize safety and quality of life in a way that reflects the patient's current values.

Some Questions to Ask

These are some of my favorite questions to ask:

  1. "Why don't we start by telling me what you already know (or think is happening) and understand, and we will go from there?"
  2. “What are your goals for your loved ones' communication during this time?”
  3. "Are there particular challenges you see in their ability to communicate?”
  4. “What is something I could do to support you and your loved one to have quality interactions at this time?”
  5. "Is there anything that [name of the patient] seems to want to communicate but is unable to?”

The first question is actually really important and ties back to the idea we discussed earlier: what do patients actually know and understand about their situation? We always assume good intentions. When a patient says, "I've actually never been told that," or "That's not what I understand is happening," we assume our colleagues have communicated this information. However, we know that during times of stress and trauma, people can't always retain all the information—they tend to fixate on certain details.

Starting by asking, "Tell me what you already know, what you understand, and what you think is happening," is a powerful question. It ensures we step back and understand the patient's perspective. This question reveals what the patient comprehends, communicated in their own words and language, and how they conceptualize their situation and our presence. It provides a foundation for us to address any gaps in understanding and align our care with their perceptions and needs.

The second benefit of this question is that it reveals what patients are hyper-focused on. They've likely received a lot of information from various professionals, but when asked to explain it in their own words, they'll highlight what feels most important to them. This gives us insight into their primary concerns and preoccupations. 

When patients share their understanding, it allows us to gently query other aspects of their care with good intentions. For example, instead of expressing disbelief that they weren't informed about something, we might say, "I'm wondering if someone has talked to you about why you might feel so sleepy in the afternoons and how it relates to your medication schedule." This approach helps clarify misunderstandings and ensures patients are well-informed without undermining trust in other healthcare providers. Assuming good intentions keeps the conversation positive and constructive.

Asking patients about their communication goals during this time is also critical. This ensures our approach is effective and tailored to their needs. While these questions might seem basic, starting here and slowing down before diving into the impairment specifics helps us build a comprehensive picture of their situation. This approach enables us to choose the best next steps and provides care that aligns with the patient’s desires and priorities.

Asking, "Is there any particular challenge you're noticing?" helps us hone in on specific issues and make effective choices, especially given the limited time often available in end-of-life care interactions. This question is vital as it allows us to address immediate concerns efficiently.

Another essential question is, "What could I do to really support you and your loved one having interactions at this time?" This encourages individuals to think about their most pressing needs, helping us provide targeted and effective support. Often, communication fixes can be quick and simple, but stress, grief, and bereavement can obscure these solutions, making it a "forest through the trees" situation.

Finally, it is crucial to ask, "Is there anything that your patient seems to want to communicate but can't?" This question helps identify unexpressed needs or desires, allowing us to address these gaps and enhance the patient's ability to communicate effectively.

Medical Record Review

We're starting with functional, absolutely essential, patient-driven concerns rather than focusing on impairments. Understanding what's going on with the patient, who the key players are, what diagnoses and medications are involved, and the anticipated timeframe or decline is critical. Patients can enter and exit hospice depending on whether they meet the six-month criteria. Knowing if a patient is expected to need hospice for five to six months or only three to four days changes our approach and priorities.

This understanding helps us identify who we need to talk to, as we don't have time to speak with everyone involved. Determining the key players who have the necessary information allows us to make informed decisions and establish patient-centered goals effectively.

Interview and Communication Function

Obviously, we're going to start with an interview and then move on to assessing functional communication. It's important to emphasize that functional communication is our primary focus. When assessing at the impairment level in the domains of speech, language, and cognition, we should only do so to the extent necessary for documentation and to meet the patient's functional communication outcomes. We don't want to spend excessive time on impairment-level assessments if they don't directly answer the patient's needs. We also need to meet the requirements of our payers, so we may use specific tools to provide documentation that supports these arguments.

Secondary Assessment Areas

Here are the assessment areas:

  • Well-being
  • Grief
  • Depression
  • Caregiver burden/coping
  • Vision and hearing
  • Gross motor skills (ambulatory, able to sit up)
  • Fine motor skills (able to manipulate technology or low tech, able to point)

Obviously, I love assessments for well-being, grief, depression, caregiver burden, and coping. We also need to consider sensory factors. It's astonishing how many people at the end of life don't have their hearing aids or glasses. Addressing these sensory needs is essential.

Assessing gross motor skills and fine motor skills is also very important. Understanding what the patient can physically do will help us tailor our interventions to effectively support their communication and overall quality of life.

Goals and Trial Therapy

In practice, I believe most of your time should be spent talking with patients and families. Only a little time should be spent collecting impairment-level data. We should also allocate some time for trial therapy, as we need to move quickly from assessment to intervention, given the limited timeframe.

Based on the early questions asked during the interview, we will clarify the patient's and family's goals and needs. We will also consider any additional questions from the professional care team. For example, are there concerns about the patient's capacity that we can address through cognitive assessment? Do we need to implement supports to enable the patient to participate in medical decisions, or is there a barrier to their ability to communicate effectively?

In trial therapy, we aim to make immediate improvements. What external supports can we introduce before leaving the room? These could be low-tech or high-tech AAC trials, compensatory strategies, or caregiver training. Small interventions can make significant differences in participation. While our rehab brains might think in terms of long-term solutions, our focus here is on quickly "patching holes" and augmenting abilities to meet immediate needs.

Selected Caregiver Burden Assessments

I've provided a range of options for assessment tools, many of which you can find through a quick Google search, and many are freely available. Your settings might already have them, possibly under other professionals such as psychologists, occupational therapists, or social workers. It's important to figure out who has these tools, as assessing caregiver burden is crucial.

Caregivers are often there all the time, responsible for the patient's care. As their burden increases, the quality of care they provide and their resilience decrease. Additionally, their likelihood of experiencing illness, impairment, anxiety, and other mental health issues increases. The well-being of caregivers is essential, and while we may not be able to relieve all of their burdens, we can target specific aspects.

Many caregiver burden scales can highlight areas where we can provide support, training, or relief. Caregivers often find the emotional burden of being unable to ask questions or get consent more taxing than the physical labor. We can assist with these aspects, helping improve the overall caregiving experience. This documentation can also support caregiver training goals as part of your treatment plan.

Here is a list of some excellent scales evaluated for patients at the end of life or in palliative care (See Handout, page 22).

Selected Functional Communication Assessments

If you're going to do a more standardized assessment, a functional communication assessment is the way to go. If this is a necessary part of your documentation, here are some options (See Handout, pages 23-24). The ASHA FACS is one such tool. There are other versions and communication profiles, such as the Edinburgh Functional Communication Profile. These tools focus on function rather than just identifying impairments, with the intent to step in and provide support where needed.

The goal is to reduce the pressure on impaired domains and bolster those that can be maximized for function. We're not fixing the problem; rather, we are revealing true ability, competence, and participation. This approach is similar to supported communication in aphasia.

Selected Grief and Spirituality Assessments

Grief and spirituality assessments are also important. Mental well-being is a significant aspect of end-of-life care, just as it is in all rehabilitation settings. It's important to have tools for assessing spirituality as part of your evaluation process. I want to emphasize that assessing someone's spirituality is unrelated to your own faith practice.

Patients tell us that spirituality is really important to them at the end of life. It is important to identify whether this is an aspect we need to support in terms of communication and participation ability. We haven't always addressed this well because healthcare has a complex relationship with faith practice. I strongly encourage everyone to ensure that patients at the end of life have access to their faith practices, as this is a vital part of closure for many.

There are excellent tools available (See Handout, page 25) that can help us support patients' spiritual needs without feeling like we are overstepping or lacking cultural competence. These tools allow us to demonstrate humility and acknowledge the importance of faith practice for the patient.

Goals for EoLC

What kind of goal do I write? What am I actually putting in the documentation? We need to think about what we are asking the patient to do and center those goals on participation rather than improving some impairment level or domain-specific aspect.

Focus on goals such as participating in decision-making, indicating status for wants and needs, managing affairs, and requesting interventions. Consider goals related to family connection, socialization, spiritual practice, grief processing, and a life review. Many patients at the end of life express a desire to review their lives, tell their stories, and have these stories documented as a reflection of a life well-lived.

Achieving these goals can be particularly challenging if a patient's cognition or communication is impacted. Therefore, our documentation should include goals that facilitate their ability to participate in these meaningful activities, ensuring that their final moments are as fulfilling and complete as possible.

Goal Examples

I've provided examples of goals that can be documented, but I encourage you to be consistent with the type of documentation used in your setting while making it more functional. We can adopt a chameleon-like approach to goal writing, adjusting the presentation without changing the work. For instance, if we use communication boards, we can write that goal in various ways.

Here is one example: "A personalized communication board will be collaboratively developed with patient and family, with #+ key topics and #+ keywords on each page." However, you are the specialist, and you know the expectations for documentation from your particular payers. Trust that there are many ways to write these goals that may make more sense in your specific context. Tailor your documentation to fit your setting while ensuring it remains functional and patient-centered.

The idea is to conceptualize goals such as, "Patient will complete a specified number of successful exchanges with a communication partner" or "Client will be able to share personal stories using communication aids." Another example could be, "Through training, the client can increase participation in communication activities using alternative communication options." These goals should be based on the patient's baseline abilities and the desired outcomes.

Functional, person-centered outcomes are key. For instance, "Patient and caregiver will demonstrate improved success as measured by a communicative effectiveness survey," or "Patient and SLP will develop personalized cognitive communication supports. Using a rating scale, the patient will improve communication skills from this baseline to this baseline over a specified time period using specific strategies." These examples show how you can customize goals to fit the patient's needs. Start by thinking about both the necessary needs and the wants and closure aspects of end-of-life care.

Communication and Cognitive Interventions

So, how am I going to do that? Let's talk about communication and cognition. Our practice around eating, drinking, and swallowing is different in end-of-life care compared to our practice around communication and cognition. I want to spend some time reminding us of what's actually possible.

When conceptualizing end-of-life intervention, it's important to recognize the unique context. In other areas of our practice, such as dementia, aphasia, and motor speech disorders, we often rely on evidence-based interventions associated with rehabilitation. Similarly, there are evidence-based interventions for augmentative and alternative communication. However, in end-of-life care, our focus shifts. I hope to help us think about the domains of impact and the quick fixes we can implement, given the limited time.

Expression Interventions

If your patient is not expressive, there are many ways to implement supported communication strategies and caregiver training. The evidence-based strategies that are effective in aphasia care are also essential for training, care, and communication access for patients with expressive impacts during end of life. These strategies work well regardless of whether the patient has aphasia. More support and expressive access increase communication effectiveness.

You can think about this in terms of universal design. More access, more support, and more augmentation provide access for everyone, not just those with specific impairments. Supported communication strategies like writing down keywords, providing options for response, and offering choices in multiple modalities work effectively regardless of their primary evidence-based practice trials.

Communication boards are particularly beneficial as they provide novel opportunities for people to communicate. They facilitate initiation and access that a person might not have spontaneously. We see that individuals who are significantly impacted can initiate communication when given low-tech AAC, and caregivers also initiate with them because it opens a new door for interaction.

Partner-assisted scanning has also shown efficacy in enhancing auditory comprehension in these moments.

Auditory Comprehension Interventions

The same supported communication strategies apply when thinking about topic maintenance. Topic maintenance is a technical term we use as SLPs that involves ensuring the conversation stays on track. One critical aspect to train both patients and caregivers on is checking for understanding. It's often hard for patients to ask for help or admit they don't fully understand, and the social cues related to this can be strong and muted in many patients.

Encouraging a practice of checking, recasting, revising, and asking for support can significantly change the dynamics of end-of-life care. It allows patients to feel confident in making decisions because they can ask for clarification without feeling that it undermines their intelligence or capacity. Healthy individuals often avoid asking for clarification due to ego, and this reluctance can carry over to those entering end-of-life care unless they have prior experience with similar impairments. Focusing on these topic maintenance strategies helps improve communication input, making it easier for patients to engage and understand.

Visual and written supports: How many modalities can we use to convey information? Make no assumptions—let's use as many as we can.

Hearing: Where are the hearing aids going? My other specialty area is dementia care, and those of you in this field know how few hearing aids are used among this population. But we have to start here. If your patient cannot hear you, that's one barrier to receiving information. Patients with unaided hearing must work twice as hard to understand, expending significant cognitive energy on this simple task.

We're taking a patient with low cognitive reserve and wasting it. I've often gotten the response that hearing aids are expensive or uncomfortable. I understand. So the question becomes, what else can we do to address this sensory issue?

A better practice would be to offer local amplification. Some of you might already do this, and that's fantastic. Tools like pocket talkers are essential in our toolkit when serving patients. Remember, hearing loss is not just an issue for the geriatric population—many middle-aged individuals also experience it. You can suggest to families that a $30 pocket talker might be a valuable investment.

If we can't fix the hearing issue directly, we must focus more on the environment. This includes positioning, volume, and other factors to ensure the environment supports auditory comprehension. Making these adjustments can significantly improve communication for patients with hearing loss.

Fatigue Interventions

People are so tired. The leading symptom of death is fatigue, which is no surprise. Patients who are unwell are often already tired because everything requires effort. When bodies are weak, dying compounds that fatigue. Our baseline is that patients have low resources, meaning we need to work with providers and families to prioritize communication efforts.

For important activities, like participating in significant medical decisions, we must train caregivers to identify times when the patient is most alert. This involves understanding the medication schedule and identifying peak communication abilities to counteract fatigue. Providing contextualized supports and prioritizing communication attempts that align with patient and caregiver goals is critical.

We must consider what is essential and ensure patients spend their energy wisely. For example, we don't want patients using their best communication time on tasks like dressing, bathing, or toileting. Instead, we should preserve cognitive, communication, and energy reserves for patient-centered goals or absolute medical necessities. Helping patients and families understand this concept and training them to identify optimal times for communication can make a significant difference in the quality of interactions and decisions made during end-of-life care.

Pain Interventions

When we hear from patients about their concerns, the number one worry is pain. This means we need to ensure our patients have a way to communicate their pain status and any changes in pain. This is crucial for mental well-being. Even patients who don't currently have high pain levels can feel less anxious simply by knowing they have a way to communicate their pain if needed.

Visual aids that make sense and are respected by colleagues are essential. We need to think about what an effective pain scale might look like and use visual and written supports to indicate the need for increased pain intervention.

Considering patients making medical decisions and verifying choices and capacity is important. The relationship between pain management medications and their impact on cognition must be understood. We need to prioritize communication during peak times when pain is well-managed. For instance, patients with chronic pain, like myself, are not at their best during high pain moments. Ensuring patients have a way to communicate their needs, such as requesting to postpone a discussion until they feel better, is vital. They might not have access to that ask without our support.

Reduce Cognition Interventions

When we think about cognition, our traditional practice asks us to identify areas of domain such as executive function, attention, language, and memory. However, in end-of-life care, it’s easier to consider cognition as a collective grouping. Cognition in the dying process is usually impacted in a holistic, reserve-based way rather than in individual domains. This doesn't mean a patient didn't have memory impairment before the end-of-life process, but reduced cognition should be seen as a collective issue.

We should focus on not wasting cognitive resources on unnecessary tasks. This means taking the pressure off cognition by optimizing interactions and the environment. Using lots of visual supports and adjusting the environment to minimize cognitive drain is crucial. We must remember that patients are starting from a lower baseline of cognitive resources, so we need to ensure that the environment and interactions are as supportive as possible.

Quality of Life Interventions

And that's before we consider the physical aspects of quality of life. We need lots of visual supports and opportunities for life review, goodbyes, and final conversations. These moments are incredibly important and must be facilitated. If a patient wants to share a formative story from their life, they need the resources, opportunities, and supports to do so. This includes making sure tools are available for expressing thanks, regret, and apology.

These themes occur more frequently at the end of life than in the general population. Traditional communication supports often overlook regret, which is a prominent theme in end-of-life conversations. Our communication and cognitive supports must allow patients to express these feelings, even if they don't explicitly state these goals. We should anticipate these needs and provide the means for patients to communicate them as part of their closing conversations.

Additionally, we should enable patients to share secrets, whether it's a hidden password, the location of stashed money, or a past indiscretion. Providing access to these communications can bring a sense of joy and closure. Ensuring patients can express all these aspects enriches their final moments and respects their wishes for end-of-life communication.

Supporting Communication 

When we consider communication partner training and how we're going to shore up communication and cognition, it's essential to train the caregiver. Sometimes, the caregiver is a paid professional, other times, it's a family member, or it could be a mix of different people. Using supported communication strategies is critical in this training.

AAC

I think we have to talk about AAC a little more explicitly. AAC is paramount to well-being in end-of-life practice. However, it's not always the high-tech AAC we usually conceptualize. People need access to communication, and various changes in the brain and body can make AAC both necessary and challenging.

In hospice and palliative care, most of our referrals are for dysphagia. But that doesn't mean we don't recognize the need for communication and cognitive support when they show up. Patients need access, even if it's just to talk about food using AAC. When considering AAC, we must ensure it helps them meet their end-of-life goals. This means integrating more than just medical needs like pain scales or bathroom requests. It includes well-being, psychological, and spiritual care aspects.

For instance, if a patient's goal is to say goodbye, we should provide the most thoughtfully designed goodbye boards. These tools should facilitate all aspects of their communication, ensuring they can express everything they need and want during this critical time.

You want to think about situations where someone hasn't done their end-of-life care planning and wants to talk about burial or cremation. Yes, let's figure that out. How are we going to help them do that? Basic, simple forms like written communication and basic point boards can provide that access.

Remember that just because someone can talk doesn't mean AAC isn't helpful. Talking can be effortful, and AAC can be a mode of energy conservation. For example, instead of telling the nurse something, a patient can point to a board, saving their energy for a more significant conversation later, like talking to a brother flying in from out of state. Ensure patients have lots of options—simple tools like paper and pencil, whiteboards, alphabet boards, and picture boards for essential needs. Build a compendium of options.

There is a positive correlation between how often patients respond and the quality of their care when AAC is implemented. With AAC at the end of life, think about the timeframe and future needs. Consider whether the chosen AAC will meet the patient's needs a week from now, or two months from now. High-tech devices can be difficult to onboard during this time for obvious reasons, including the challenge of new learning during this period, which can lead to low compliance.

Even if a patient has used high-tech AAC before entering end-of-life care, we should still ask if it continues to work for them. Ensuring that AAC remains effective and adjusting as needed is essential for meeting the patient's evolving needs.

So here's a small communication board (See Handout, page 40). For those of you who use the Internet, there's a great free add-on to Google called Picto4me, which lets you build quick, low-tech boards. When building boards, prioritize preferences, baseline needs, and immediacy of implementation. Can you create something and have it used later that afternoon? Ensure it works for the intended timeframe and that you can train and implement it well. Practicality is essential when serving patients near the end of life.

I like this one because it's a basic board that includes aspects of socialization. It's not comprehensive, but it offers options beyond just saying, "I'm tired." You can also use them as decisional aids. Simple AAC boards or pictographic representations can help patients make medical decisions, ensuring they understand and have opportunities for choice.

Here's a board with some feeding options (See Handout, page 41). It uses pictures and simple words, providing an anchor to discuss what's happening. This increases the likelihood that your patient can participate. These are resources we can keep in our compendium, office, file folder, or tablet to facilitate discussions.

Supportive Communication

Supportive communication is an evidence-based aphasia approach. We can use these same principles with the end-of-life population, such as speaking in normal voices, even when speaking louder due to sensory issues, and acknowledging that communication is hard.

Writing keywords to keep track of the conversation, using drawing or supportive gestures, and teaching folks to layer modalities are essential strategies. Utilizing yes/no questions and confirming understanding repeatedly are also important. This is all about universal design—doing everything possible to increase the likelihood that a loved one or patient can participate effectively in conversations.

Goals of Supportive Communication.  Regarding caregiver training, caregiver goals can be challenging depending on your documentation system. Here are some options that may work for you:

  • Caregivers will demonstrate clarification and summarizing strategies.
  • Caregivers will verbally identify three supported communication strategies.
  • During supported communication treatment, caregivers will implement the identified strategies, determining which ones work best.

To write a caregiver training goal, consider their role in implementing these strategies. This approach also works well for AAC, ensuring caregivers utilize and implement any external aid or AAC devices the patient has.

Goals for Communication and Feeding.  Here are a few goals about eating, drinking, and swallowing. We'll cover this more later. Goals could include:

  • Patient will select preferred food and drink items from a given list.
  • Patient will identify food and drink items when given choices.
  • Patient will recall and identify risks associated with specific food and drink items.

The following are goals about eating, drinking, and swallowing with a communication component. So, we should think about how we communicate about food preferences and food safety.

  • Caregivers will demonstrate clarification and summarizing strategies within 90% of opportunities to confirm understanding of pt expressed wants/needs/thoughts/feelings ideas.
  • Caregivers will verbally identify three supportive communication strategies to increase the patient's ability to meet wants and needs after completion of the Communication Partner Training session.
  • Supportive communication treatment will be completed with the patient and caregiver/family, with each partner receiving 3 key strategies to practice.
  • Caregivers will verbally identify three supportive communication strategies to increase the patient's ability to meet wants and needs.

Feeding and Swallowing Intervention

I have many feelings about our current practice in end-of-life care related to eating, drinking, and swallowing. I won't make any assumptions about your community of practice, but I think it's important to reflect on this. What is your current community of practice doing? Are their actions evidence-based and ethically grounded? This isn't an accusation but a point for us to consider how we got to where we are.

Assuming good intentions, sometimes we continue practices that we shouldn't be doing anymore. Here are things we commonly see at the end of life related to eating, drinking, and swallowing: a dramatic decrease in interest in eating and drinking, a dramatic decrease in swallow function, a dramatic decrease in levels of arousal and awake time, and dramatic changes in respiratory patterns. These changes are often alarming for both patients and families.

So here's something we know happens with eating, drinking, and swallowing at the end of life. Patients can experience weakness in their bodies as they start to shut down. This weakness leads to difficulty in eating, drinking, and swallowing. This can result in malnutrition and dehydration, which in turn makes the patient weaker and exacerbates the difficulty, creating a cycle of accelerating dysfunction.

One of the key conversations we need to have with patients and families is about the right intervention: when and how it should be implemented and how it reflects the goals of care.

Patients and families often view food as a source of comfort, especially when things feel out of control. There is a strong belief that comfort and food go hand in hand. However, when a patient begins to exhibit dysphagia, it's a prognostic sign indicating a rapid decline. We also know that patients rarely adhere well to recommendations for swallowing changes, particularly at this stage. They often don't want to alter their diet, which should surprise no one. It's important to keep these factors in mind and avoid setting unrealistic expectations. Instead, we should focus on finding interventions that align with the patient's goals and provide as much comfort and dignity as possible.

When we consider choice, does the patient have the opportunity to refuse diet modification? In many settings, we simply declare that a patient isn't safe on a certain diet and serve them accordingly. This prompts us to reflect: Is this the right approach? Is this the right moment to enforce such restrictions?

There are community practice issues to consider here. We know that when people are very unwell, they struggle to follow treatment recommendations or strategies. As partners in decision-making, we need to figure out the right choice for this moment. Safety cannot always be paramount, especially when it's clear that the patient is dying. We need to approach this situation with a different perspective, prioritizing the patient's comfort and quality of life over strict adherence to diet safety guidelines.

Clinical and Psychological Factors to Consider for Assessment of EDS in EoL

We want to consider the patient's alertness and arousal and their actual primary diagnosis. Did they have dysphagia or eating, drinking, and swallowing problems before? What is the actual reason that they're at an end-of-life stage? Do they have any secondary considerations that impact the way we're going to serve them and their eating, drinking, and swallowing?

Assess their trajectory: Are we dealing with organ failure, general frailty, or something else? Are we looking at a timeframe of a week, a month, or six months? Consider sensory and vision problems and how these affect their interaction with food and drink. 

Physical considerations include gastrointestinal issues—most people don't want to eat when they feel nauseous or constipated. How do these conditions impact food intake, and how can we communicate this to caregivers? Evaluate their pain levels, the effects of their medications, their oral health, and their ability to sit and feed independently.

Psychological considerations include the patient's fear and anxiety related to eating, drinking, swallowing, and dying in general. Is there acceptance or denial of their current medical status? Consider any other documented psychological challenges.

Social considerations involve their location: Are they at home, in a hospital, or long-term care? What type of support is available, and what are they likely to receive?

Optional Goals

Here are a handful of optional goals. Again, these are caregiver goals, which you can adapt to fit your documentation system if that makes sense for you:

  • Caregiver will demonstrate proper oral care techniques...
  • Caregiver will demonstrate suctioning of the oral cavity...
  • Caregiver will demonstrate careful hand-feeding procedures with minimal clinician prompting.
  • Caregiver will describe the differences between choking and aspiration.
  • Caregiver will compare and contrast the need to eat and drink for pleasure versus nutritional and medicinal purposes.

Oral care is essential, enhancing patient comfort and reducing the risk of pneumonia. Oral care is extraordinarily important and dangerous for these patients, and it's a critical area where we can step in. At the end of life, very few of us would prioritize something like teeth brushing, yet it's crucial for patient well-being.

It is important to help families understand the value of oral care as part of overall well-being. If a patient finds eating or drinking uncomfortable, caregivers can substitute other activities to demonstrate care and love. Oral care, like hand feeding, is an intimate act, so ensuring everyone is comfortable with this approach is vital. 

Oral care must be given equal importance to food intake in our goals and intervention approaches because it is potentially more dangerous. This is often overlooked because the focus tends to be on nutrition, but in reality, oral care is both uncomfortable and risky due to the possibility of pneumonia.

When a patient is no longer eating or drinking much, shifting focus to oral care can provide intimate contact without the need to deliver food, maintaining that critical connection and care.

Conclusion

Remember that communication is such an essential component of quality of life for patients at the end of life. It cannot be overstated. In my view, communication is second only to pain management in importance. Effective communication is crucial for end-of-life care, bereavement, and overall well-being. Achieving these aspects of care relies heavily on our ability to facilitate and support meaningful communication.

We should be front and center with patients at the end of life for communication, not just for eating, drinking, and swallowing, or dysphagia. This is essential. We can support eating, drinking, and swallowing by helping families conceptualize the goal: understanding what they want, what the act of eating, drinking and swallowing looks like, and considering patient preferences and oral care.

We can step in beyond the traditional dysphagia referral approach. Our broad goal of intervention is to help people participate in their own decision-making and have autonomy so they can achieve their self-described goals in this moment. One thing I've learned from working with folks at the end of life is that people have new and novel goals during this time. Mortality shifts what people want to do, what they want to say, and what they want to communicate.

Just because someone has communicated a certain way or made certain decisions up until this point doesn't mean their choices won't change. They need the ability to indicate those changes. Providing this support is critical to ensuring their final moments are as meaningful and fulfilling as possible.

The sort of last parting wisdom I would give to everyone about this is related to the placement of feeding tubes for patients at the end of life. This is an ethical issue that I discuss with clinicians frequently. I don't want you to hear me say that feeding tubes are inherently bad. What I do want you to understand is that feeding tubes have specific evidence for specific populations and are not always indicated.

I often wonder if patients with advanced illness or dementia at the end of life, who are given feeding tubes, fully consent to that decision with a comprehensive understanding of the ramifications. This is not an accusation but an observation. Sometimes, in our desire to help, we may do more than what is beneficial or what the patient would want if fully informed of their options.

As practitioners who often deal with feeding, dysphagia, and feeding tubes in advanced illnesses, we should ask questions about our local practices and how they have evolved. Evidence is wonderful, but it changes over time. Ensuring that our practices are evidence-based and ethically grounded and that patients are fully informed and consent to their care decisions is critical.

Questions and Answers

What was the reference for creating simple AAC picture boards?

It's called Picto4me. It's a quick, low-tech board generator with tons of photos, allowing you to customize the board size (e.g., 2x3 or 8x8) and labels. You can choose how much or how little information to include, which is great for patients with poor reading ability or poor intake; single words or no words might be best. For boards serving as a liaison between a communication partner, caregiver, visitor, and patient, prompts might be longer. For example, a picture of a storybook might be labeled, "I would love to hear a story about us from our childhood."

Really imagine the situation. The person has the board, and a family member or friend from out of town visits. This is the goodbye tour that many folks go on. I'm a person with low cognition or low communication, and I want to say, "Hey, I just want to hear stories." That's part of my person-centered goal. But I don't have a way to say, "Hey, remember that time when we were kids and we were driving on that backcountry road? Tell me that story."

Providing people with a prompt gives the communication partner a way to participate that meets goals. How many times have you sat vigil or been in a space where someone is really unwell, and nobody knows what to say? What if we could give them what to say? What if we could provide a prompt that meets everyone's goal?

For me, this is the opportunity we have here for good deaths. That's magical. That is good work, not wasted work. This is what all of us would want at the end of our lives. We want that for our families, and we are uniquely positioned to do that. There are many things we don't do—not because we can't, but because we haven't thought of it that way.

How frequently do SLPs receive hospice consults?

From my experience, this is complicated. It's highly dependent on your community of practice. I've seen certain communities where hospice referrals to SLPs are regular, and the SLP is an active participant or at least a consulting member of a hospice or palliative care team. In these communities, there's a strong liaison relationship as part of the practice.

However, more frequently, I've seen zero communication between hospice teams and SLPs. Often, when a patient is designated as dying, in end-of-life care, or in hospice, all referrals for ancillary services cease. Despite speech pathologists being primary reimbursers under the Medicare hospice benefit, the community practice often says, "Well, they're dying," and stops the referrals.

Now, that's a more complicated problem. Here's my third option. I've seen individuals with a strong desire to do this work and excellent advocacy and communication skills slowly create a collective knowledge in their community, recruit allies, provide training, and eventually start getting referrals. So, you do have the ability to shape the community of practice in your setting.

Are there lots of boundaries? Yes. The real boundaries are the payers. If your community of practice isn't sending you referrals for something we know is reimbursable, that's a pattern of practice we've adopted—not because it's not allowed, but because we decided at some point not to do it.

Again, we’re not assuming bad intentions. I encourage you, if you’re in a setting where you’re not receiving these referrals, to first identify potential allies. Then, start inquiring about the reasons in a non-threatening way—not accusatory, but curious. For example, "I noticed the other day when I walked past Miss Betty's room. She had been placed in hospice and didn't seem to be communicating well. I'm wondering if I could get a referral for that." See what they say or why it hasn’t happened.

First, we need to understand how our setting got to this point before we can fix it. Often, we ended up here by accident or because someone higher up decided this practice. Can we change that? Maybe, but we can certainly try. Sometimes it starts with working with one doctor, one rehab person, or one nurse to begin a steady, slow stream of referrals. Serving even one person in this way is significant.

When family members clash, is there anything we can do or focus on to help, or is it sort of not our role, and should we stay out of family interpersonal relationships?

That's literally the reason I specialize in end-of-life care, because that is what happened in my family. My grandmother had advanced dementia. She didn't have the capacity to make her own decisions, and she was dying. The primary caretaker was not the medical decision-maker.

My grandmother did not have advanced care planning documentation. Every child of my grandmother claimed to have had a conversation with her about what she wanted, but none of those conversations matched. This created an extraordinary amount of tension in the family. Ultimately, my family and I faced a lot of conflict, and I don't feel ashamed to share this story; it's one I tell all the time. We debated about a feeding tube up until my grandmother died.

And so here's what I think we can do professionally. The first question I would ask is, are we sure that patient doesn't have capacity, or are they just not augmented in a way to demonstrate their capacity? Michelle Bourgeois has an amazing article about how visual support and visual decisional aids prove capacity in advanced care planning. That's the first thing. It's a wonderful paper, so go look at that.

The second question I would ask is, is there legitimate documentation? Because if there is, then that's what needs to be followed.

Now, I believe we, as speech pathologists, are superior communicators in every way. Out of all allied health professionals, I think we are especially skilled here. In our service to the patient, if we see disagreement, this is an opportunity for us to pose good questions and help families come to a different understanding of what's happening. We're really good at explaining difficult things clearly and asking questions that help bridge gaps in understanding.

When I work with patients, I often use the question, "One of the questions I'm asking myself is..." to help delineate my thought process and give caregivers a chance to reconsider their approach without feeling accused or pressured. For example, I might say, "I can see that there is a lot of disagreement about how to approach your mom's eating and drinking. I can see how stressful this is for all of you. I know this is not what your mother would want, so I want to work with you to help bring us closer together. Let me see if I can help understand where you are."

Then, go back to the first question: "What do you understand is happening?" Sometimes, staunch disagreements arise because one person doesn't fully understand the situation. This often relates to the person not being ready to accept that their loved one is dying, leading them to push for full medical intervention. This is a bereavement issue, and recognizing it as such can help guide the conversation more effectively.

But that plays into the care, and it's about understanding why someone has the beliefs they do. It's not about judging them but understanding how they got there to see if there's a way to intervene. While it's not our role to be mediators, in matters of eating, drinking, feeding, communication, or cognition, we can act as a "secret mediator" to understand the underlying issues.

For example, what I wouldn't have given for one professional to say, "I can see this is causing a lot of conflict in your family. Let's back up and have a different type of conversation." That could have changed the trajectory. If we can't mediate directly, we can call in a social worker, a nurse, or another appropriate professional.

Even if the patient isn't fully aware or doesn't understand the conflict, they can still sense tension around them, which is not what we want. Death causes a lot of conflict, and stepping in to reduce that tension contributes to the quality of life for our patients.

Citation

Stead, A. (2024). Effective treatments for patients near the end of life. SpeechPathology.com. Article 20673. Available at www.speechpathology.com

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amanda stead

Amanda Stead, PhD, CCC-SLP

Amanda Stead, PhD, CCC-SLP, CHSE is an Associate Professor at Pacific University. She teaches courses in Communication and Aging, Aphasia, Progressive Neurological Disorders, End-of-Life Care, and Counseling. Her research is in the area of evidenced-based education, simulation, end-of-life care, and professional issues. 



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