Role of Speech-Language Pathologists

Role of Speech-Language Pathologists

Literature Review

Introduction

This chapter critically reviews the current literature explaining the purpose, knowledge, and practices used by Speech-language therapists in the administration of dysphagia for patients under the end of life palliative care. The chapter outlines the scope of Speech-language therapists practice in end of life palliative care. The literature review also states the goals this study strives to achieve and future benefits from the findings once the main aim of the study is completed.

1.1 Palliative care and end of life palliative care:

Different types of education and research vary in defining the term palliative care, as confirmed by a procedural review done by Van Mechelen et. Al, 2012. Moreover, the term palliative care has been used alternatively with a terminal illness, hospice care, and end-of-life care. Hospice care is only administered if the physician has determined the remaining life of the patient to be less than six months  (Roe & George, 2016).

The diversity of palliative care patients and end of life palliative care patients makes it difficult to have a clear cut definition that describes both populations individually. The tradition of adopting palliative care during the final stages of a life-threatening disease has significantly influenced the definition of palliative care as terminal care.  Borgsteede et al. specified the inclusion criteria of the population to be based on the characteristic of the patient disease, such as progressive or terminating illness.  Others use the medical manifestations of conditions such as pain, oxygenation, and weight loss to specify the population. In most studies, cancer, organ failure, dementia, and frailty had the highest disease incidence in the community when defined.

According to the World Health Organisation (WHO, 2016), ‘‘palliative care is an approach that improves the QoL of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering utilizing early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

Despite hospice management being used alternatively with terminal hospice care, the two have very different meanings. The American Academy of Hospice and Palliative Medicine (2001) palliative hospice provides care to patients who have around six months left and have chosen comfort care over invasive treatment methods. In pollens article about SLTs integrations in palliative care 2012 he mentioned that the National Institutes of Health Consensus Development Program (2004) conducted a consensus definition of the term end-of-life care as the time frame when signs or weakening induced by a chronic illness require immediate attention since they have the potential to hasten death.

The academy defines palliative management as care that concentrates on bettering the patient’s quality of life by preventing and reducing symptoms manifested by a non-curable disease. MEDLINE identifies palliative care as care that focuses on mitigating a disease’s symptoms without administering curative treatment.

Although palliative care lacks a universal consensus definition, it has been given more attention, unlike the term palliative care patient, after analyzing the several meanings of palliative care patients, the systematic review done by Van Mechelen et. Al, 2012 concluded that scholars define the term depending on their context.

Scholars also use an alternative inclusion tactic where they consider the patient’s dependency level and the patient’s lack of or use of curative treatment. Van Mechelen et. Al opposed the use of different inclusion methods since they result in populations with huge distinctions from each other, making it challenging to compare results from various studies. Although Van Mechelen et. Al failed to obtain a standard definition of palliative care patients; the scholars were able to burst several definition myths and offer recommendations that can be used to define this population. The scholars dismissed the practice of identifying palliative as non-curable after eliminating 49% of the non-cancer studies from their review. The non-cancer studies were thrown out since their primary concern was caring for chronic non-threatening diseases with no treatment options as opposed to palliative care. Van Mechelen et. Al recommends the inclusion of the following characteristics in defining palliative care patients: disease trajectory, type of disease, its advancement approach, and outcomes of interventions.

Levy, Dominguez-gasson, Brown, & Frederick, ( 2019) defined end of life population as critically ill invalids who demonstrate various immunodeficiencies such as critical dementia, old age, and advanced diseases. End of life patient population does not include patients battling with advanced brain impairment.

According to pollens 2012, no significant differences were found in the setting of terminal care and palliative care. Interventions occur in various settings such as family or nursing homes and also outpatient clinics (National Consensus Project for Quality Palliative Care, 2004).  Despite the numerous settings, hospice, palliative care, and terminal care in Saudi Arabia mainly take place in hospitals with no presence of hospice in the country.

Generally, the interventions methods included in hospice care and end of life care signs control through alternative therapies, advance care planning, symptom control through radiotherapy, illness control through drug administration, surgery, promoting communication, exalt care planning, psychiatric care, symptom control through radiotherapy, illness eliminating using radiotherapy and patient and caregiver knowledge to improve life quality. Wallace (2013) indicated that although palliative care is dominated by the end of life patients majority of patients near their demise aren’t undergoing hospice management.

Pollens 2004 outline Six components of palliative care, which further discourse the objectives of hospice management:

1. Validate life and acknowledge death as a natural process

2. Ensure no inhibitors or accelerators affect the dying process
3. Reduce patient’s pain levels and disease-induced distress
4. Provide comprehensive care by taking into consideration both psychological and spiritual elements
5. Provide support focused on improving the patient’s participation in life’s activities until their demise to patients.
6. Act as a support system to aid the patient’s family in understanding and coping with the burden of the patient’s advanced disease

1.2 Swallowing challenges (Dysphagia) at the end of life palliative care patient;

The clinical manifestation of dysphagia includes problems when swallowing fluids or food, coughing during/after eating, rapid weight loss, chills, changes in breathing and food/liquids moving back up the throat or nose after swallowing; as a result increasing the risk of aspiration and aspiration pneumonia. In most cases, aspiration often results in coughing; however, in situations where desire does not lead to coughing are referred to as silent aspiration(Linda Nazarko, 2015).

Bogaardt et al. (2015) unsnarled that the majority of palliative care patients battling with chronic illnesses also suffer from dysphagia and communication problems. Out of the 164 unsedated patients who were observed for 72 hours before their death, dysphagia had an incidence of 79%, which also impact the family members and caregivers. As family members watch their one of them suffer from a terminal condition that inhibits most of their standard functioning, such as swallowing foods, they tend to become stressed and anxious. Additionally, Bogaardt et al. also poised that the occurrence of deglutition challenges among patients with non-malignancies was much higher compared to patients battling with malignancies. Numerous scholars have identified dysphagia to be among the most common complications experienced as deaths near.

The scholars were also able to identify that dysphagia intervention during the last phase of life should be less distressful since their ramifications on the patient’s quality of life are reduced. A retrospective study by Shroder (2012) discovered dysphagia to be among the top seven complications that developed in a patient’s last days. The scholars also poised that Speech-Language Therapists (SLT) are mandated to assist these patients in maintaining a good quality life. SLTs’ role in managing dysphagia in palliative care patients entails making decisions on what foods the patients will consume safely to have minimal risk of aspiration, when, and how they will be destroyed.

In their study, Roe and George (2016) identified anorexia, the physical labor required in feeding, frequent coughing, loss of appetite, and problems with oral secretions as the leading symptoms of dysphagia in palliative patients. They also stated that the advancement of symptoms manifested by the life-threatening diseases could result in dysphagia. According to the scholars, as palliative patients come closer to death, their ability to recognize the feelings of hunger and thirst become impaired as they move toward coma and death; thus, SLT’s management of dysphagia in such patients becomes crucial.  Additionally, swallowing difficulties is one the major challenging issue an SLTs can face when supporting patients and their caregivers.

Patients with dysphagia will develop several consequences, such as malnutrition, aspiration anxiety, and depression, which lead to reduced life quality. (Tan, Gan, Hum, & Lee, 2018). For the effective prediction of the diseases’ trajectory, the patient’s weak factors, such as swallowing challenges, should be considered. Such factors aid the SLPs in determining the best treatment plan for palliative patients, especially those elderly patients. Considering the patient’s frail factors enables SLPs to significantly increase the survival rate for patients in their old age since swallowing challenges inhibits their survival rate.

1.3 The recommended practices of speech-language therapist in palliative care found in the literature;

The starting point in the establishment of educational and research supporting the SLT’s obligation in palliative management setting is to investigate the recent practices evolving.  Kelly et al. recognized the growing appreciation for SLT management in dysphagia. The scholars also identified several palliative care writings that offered recommendations to improve the role of SLT in palliative care. The scholars recommended that SLT interventions must assume a flexible nature for them to enhance the quality of patients’ lives comprehensively. To gain flexibility, SLT must shift from the traditional rehabilitative role and adopt a consultative and supportive role where goal setting depends on each patient’s health conditions and aim the quality of life improving. Assuming an advisory role also promotes the principles of autonomy since the patients have a say in the care they receive. The adoption of rehabilitation roles makes it difficult for an SLT to set goals and determine the limitations of care.

Roe & Leslie (2010) posited that the primary task of SLP in hospice management is to nourish life and quiet down the ramifications caused by the chronic illness by aiding the patient and their family achieve their daily activity goals and improving the patient’s engagement in various life activities until their demise. In their scholarship, O’Reilly and Walshe (2015) conducted a survey where they investigated the notions that different SLPs harbor regarding their role in palliative care settings. Through the study, the scholars identified that most SLPs concur with the idea that their duties include: discovering and controlling communication difficulties, availing of knowledge to both the patient and their family and adopting a consultative role as a member of the multidisciplinary team in the management of communication and swallowing challenges. Scholars such as Eva & Payne (2014) Kane Miller & Willging (2012) and  Nelson (2012) concur that the topic of rehabilitative care in both palliative and hospice care is gaining more consideration in recent scholarships.

In his 2004 journal Pollens, categorized the official generalship that aid SLPs in making ethically sound decisions when caring for end of life patients into four categories. The categories include nonintrinsic influences such as legal concerns, patient and family preferences, quality of life, and patient’s clinical symptoms.

According to Pollens (2012), most palliative care teams consider SLTs as auxiliary team members because their services are only requested when the need arises. He also argued that end of life palliative care interventions is founded on social models that favor SLPs role in aiding the end of life patient and their families to achieve their quotidian activity goals and advance their quality of life.  Even as supporting team members, SLTs significantly impact the quality of their patients’ experience.  Pollens also listed that SLPs are mandated to consult and communicate with the end of life invalids, their family, and other members of the multidisciplinary team to develop a comprehensive dysphagia management care plan.

Pollens (2004) listed that SLPs have to engage in the following roles when providing palliative care or hospice care:

1. Brainstorm with the patients, their families, and members of the palliative team concerning their preferences in terms of communication, and deglutition officiates.
2. Deliberate on which effective strategies and tools should be implemented to improve the patient’s communication for them to take part in decision making actively.
3. Assisting in quelling down disease-induced life complications to elevate patient comfort, family interactions, and eating satisfaction.
4. Engaging in collaborative discussions with the interdisciplinary team to provide and seek opinions on interventions that will advance the patient’s quality of life.

Pollens grouped his recommended practices for SLT to be an active clinician into three actions: communicating effectively with the interdisciplinary team and patient, providing quality care to the patient and their family, and education of the patient, family, and SLTs in a palliative management setting. As members of the multidisciplinary palliative team, communication is a vital SLT role. He recommended SLTs to adopt documentation for them to maintain participative communication. SLTs can accomplish this by giving their patients notebooks that they can use to jot down their emotions and preferences. This strategy not only improves patient communication but also involves the patients in making decisions about the care they receive. Pollens also recommended that SLTs should ensure that the flow of information between team members is fast and timely. Dissemination of data with the multidisciplinary team members enables the entire team to be aware of their roles and responsibilities. Groups, where all members have clarity of their roles and responsibilities, have high chances of achieving their goals. Effective communication also allows team members with different medical experts to share opinions, which enables the team to devise techniques to optimize palliative care in general and other services related to swallowing and communication given to patients. Given that SLTs’ services are requested once the palliative team observes swallowing or communication difficulties, Pollens recommends that SLTs communicate the importance of their services to the rest of the group.

The National Institute for Health and Care Excellent (2015) recommends that SLT must first discuss with their patients the different treatment options available for them. They must inform the patients about the boons and potential risks regarding any treatment alternatives. This practice promotes the patients’ right to take part in decision making and also ensures side effects from the treatment are easily managed. (Bogaardt et al. (2015) also advocated for SLPs’ role in the provision of information and knowledge concerning the invalid’s swallowing challenges and feeding capabilities to the patient’s nurses and family.

For SLT to provide quality palliative care, Pollens (2012) recommends SLTs to perceive their patients’ health status from the multidisciplinary team’s view. This will enable the SLT to adjust their care plans accordingly. He also suggested that SLTs have to maintain a healthy mental state for them to provide quality palliative care. Managing dying patients daily can cause emotional strain on SLTs, making them provide mediocre care. With a healthy mindset, SLTs can create professional decisions that are not influenced by their emotions.

Speech-language pathologists can significantly improve their services by advancing their education and skills in palliative care. Numerous researchers have already identified that lack of structured training in hospice management undermines the obligations of SLT in palliative care; SLTs acquiring more knowledge in the area will improve the awareness of their services. SLTs are recommended to learn more about social and cultural factors that affect patients’ preferences and participative palliative care practices. Speech-Language Pathologists are also advised to attend educative palliative care sessions held by hospice and palliative care providers. Attending the meetings not only increases the SLTs’ knowledge but also enables them to recognize the significance of other palliative care team members.

Biddle and Mitchell (2008) advocated for in-service training as a useful tool for SLTs to improve their expertise. SLTs are recommended to offer presentations that describe their success in achieving palliative goals through SLTs interventions. Documentation of their success increases the recognition of the role of SLT in palliative care. The presentations can also be used to educate other SLTs and also assist SLT in comprehending concerns and issues that other palliative team members may have. Documentation and presentation of SLTs success a pool of literature that can be as guidelines for future palliative care.

Our care is shifted towards the caregivers more than the patient in this stage, and we look at the patient as a social being, not just a collection of disease and symptoms. Drawing from Eva and Payne (2014), patients battling chronic diseases can be divided into four types of care:  palliative care, support care, rehabilitative, and prevention care. Palliative care focus on advancing the life patient’s quality even as the life-threatening illness advances, and the reality of death kicks in. While preventative care is concerned with the reduction of disease symptoms, rehabilitative care aims at restoring the patient’s level of functionality. The scholars also defined supportive care as care that focuses on aiding the patient to embrace health and functionality changes brought about by the disease.

Lambert (2012) argued that the scope of SLPs’ role does allow them to engage in decision-making processes concerning a patient’s medication and surgical alternatives. SLPs’ input in decision making is limited to issues and questions about oral care and hydration, communication impairments, and techniques to reduce communication challenges as well as administration and maintenance of external feeding tubes. Samantha Eckman 2015 outlined that SLTs are responsible for providing holistic patient treatment that adopts a patient-focused approach in the formulation and provision of hospice care.

O’Reilly and Walshe (2015) also identified that most SLPs acknowledge that their tasks in palliative care settings are often inhibited by the paucity of resources, development, and recognition. The SLPs inclined that with improved research, better specialist education, and training, their field stands to gain more recognition. Wallace (2013) identified four significant factors that have led to the under-recognition of SLPs’ role in hospice and EOL patient care. Wallace argued that although patients under hospice care are qualified to obtain SLP care, Medicare ignores the role of SLPs in hospice care (Center for Medicare and Medicaid Services, 2013). According to Medicare, SLPs are not part of the hospice care team and that their services are only required when the need arises, and thus SLPs are reduced to consultants who are invited to provide speech-language care only when a need id identified. Consideration of SLPs as non-hospice care members makes it challenging for hospice programs to comprehend the scope of services provided by SLPs fully. In addition to the two inhibiting factors, Wallace also stated that since SLPs hardly receive any formal knowledge and training on how to handle death and dying patients, this knowledge gap results in insignificant improvement of a patient’s comfort in hospice settings. Wallace indicated the fourth inhibiting factor as the assumption that Medicare doesn’t cater for SLP service costs. Numerous researchers and several studies have argued that SLPs provide rehabilitative services for terminally ill patients or but little attention has been directed to how such interventions improve quality of life and significantly reduce the chronic disease’s symptoms in patients (Pollens, 2004).

1.4 Guideline present for the Speech-language therapist in the management of dysphagia in end of life palliative care

Scholars O’Reilly and Walshe (2015) admit that SLTs taking care of palliative patients suffer from a lack of guidance and limited regulations in their field. Although the adoption of SLTs in the management of dysphagia has been significantly recognized over the last decade, many SLTs professional bodies continue to ignore this field of practice. Chahda, Mathisen & Carey (2017) suggested that for SLTs to acquire full recognition as inherent members of the palliative care team, clinical guidelines must be developed for this discipline. According to scholars, experienced SLTs should work together to document the strategies, procedures, and policies of practices that have helped them achieve their palliative care goals. These strategies will aid in the creation of praxis based material, which can be used to establish clinical guidelines for SLTs in dysphagia regulation in EOL palliative settings.

The presence of clear and consensus guidelines is crucial since the guidelines aid SLPs in comprehending how the end of life concept influences the decision-making process of the patients and their families. The guidelines also assist SLPs in understanding how the EOL concept causes variations in the patient’s preferences of intervention measures (Pollens, 2012). Moreover,  Chahda, Mathisen & Carey (2017), stated that the creation of guidelines for SLPs providing care in palliative setting could result in the recognition of SLPs as integral members of the multidisciplinary palliative care team.

Legal guidelines are vital for SLTs managing dysphagia because they are tasked to make sound decisions and nutritional goals for their patients. In their line of duty, SLTs have to make decisions on what foods the patients should consume and how they should be administered, i.e., oral or nonoral feeding. Legal guidelines are also crucial since any nutritional complications that arise during palliative care may result in hastening the patient’s death. Kelly et al. insisted that with knowledge of legal and ethical concerns and the ability to seek guidance during complex decision making, SLTs can effectively offer patient-centric palliative care.

In the journal: Clinical Decisions Regarding Patients with Dysphagia and Palliative Care, Sheltman agrees that SLTs have to take into consideration legal and ethical guidelines when making palliative care decisions. In addition to honoring their Hippocratic Oath, Sheltman indicated that SLTs have to follow the moral codes of autonomy, justice, beneficence, and nonmaleficence. While the principle of independence respects the patient’s will and determination, beneficence principles require SLTs to uphold the patient’s best interest in all decisions. Although SLTs have the responsibility of determining what is best for the patient, they have to respect treatment decisions made by patients even though they might seem unwise. The principle of autonomy only allows patients to reject treatment based on their personal and cultural beliefs, but it doesn’t allow them to demand any form of therapy or treatment. The principle of nonmaleficence ensures that patients are not harmed as they receive palliative care, while justice ensures that all patients have access to equal resources. Guidelines from the National Institute for Health and Care Excellence (2015) recommend that clinicians’ decisions to offer treatment or not should be made after informing the patients all boons and adverse effects associated with the treatment methods.

According to Kelly at al, following the principles of autonomy gives rise to the concept of informed consent.  Kelly et al. defined autonomy as the patient’s right to make their own decision regarding the treatment, and consent is required for any treatment, including dysphagia treatment. Even if the patient has limited capacity and communication limitations, SLTs are required to make the adaption and facilitate patient communication to provide full input. Kelly at al. also outlined that ANH tube feeding and diet modification such as using thickener are considered medical treatment, and rejection of this treatment is no objection to palliative care.

Legal guidelines inhibit health care practitioners from administering treatment to patients without first obtaining the patients’ permission. Awareness and consent guidelines require SLTs to explain to the patients the available forms of treatment and consequences associated with each treatment before asking the patient to choose a treatment option. It is assumed that with the right information, patients can make the right decisions about their care plans.

Although legal and ethical guidelines in palliative care are scarce, Sheltman recommends SLTs to consider the following guidelines’ category to make the right decision. The four types include the patient’s preference, clinical facts, cultural factors, and clinician’s advice on the patient’s quality of life. Sheltman advocates that by considering these categories, SLTs will uphold the principles of justice, autonomy,   nonmaleficence, and beneficence. Kelly et al. argued that awareness of legal guidelines enables SLTs to be more confident as they offer palliative care. Legal recognition also equips SLTs with adequate knowledge to provide patient-centric palliative care. According to White, Willmott, & Ashby (2011), SLPs’ awareness and recognition of when to ask for guidance when handling legally and ethically challenging concepts in the provision of palliative dysphagia management significantly enables them to provide patient-focused palliative care. This highlight the limited references available to regulate the SLT practice in the regulation of dysphagia in end of life palliative care (table 2.1) below.

Kelly et al. (2018) poised that SLPs are also tasked with the responsibility of collecting all necessary documents as evidence that they upheld all legal and ethical principles of beneficence and nonmaleficence. He also argued that general help practitioners and other members of the multidisciplinary team are expected to document their interactions with patients accurately. Legal and ethical guidelines regarding documentation require SLPs to include the following data: individuals present in planning of the SLT palliative care, name of the person giving consent, type of education availed to the patient and their family, name of the educator, recommendations prepared to the patient and their family, rationale behind the provided recommendations, benefits and threats associated with the suggested treatment alternatives and questions asked by either the patient or their family members. Answers to the questions raised are also included in the documents. Due to its significance, the documentation process must be accurate in that the correct chronological order is observed, medical diagnosis and prognosis must also be included as well as the patient’s and family’s preferences and wishes. Levy et al. also proposed that documentation should include patient and family statements such as do not code and no feeding tubes. Such statements are essential since physicians refer to them while providing palliative care.

Kelly et al. (2018) also recorded that the legal stand on topics concerning nutrition and hydration vary from state to state. He, however, recommended SLPs to make decisions based on the following legal guidelines: principles of autonomy, informed consent, patient’s legal capacity, and the patient’s current nutrition state. In the case where the patient can’t make a legally abiding decision, SLPs are encouraged to form a decision based on the principle of autonomy. Kelly et al. also poised that SLPs should seek medical advice in situations where the legal and ethical guidelines conflict or are unclear.

The Barriers and facilitators in the practice of SLTs in this area were investigated by Scholars O’Reilly and Walshe (2015).  barriers like resource availability such as time and educational material, unclear understanding, and under sourced research describing the role SLTs in this area and the participants would highly welcome the presence of formal guidelines in the tasks and responsibilities of SLTs in palliative care.

• The Role of Speech-Language Therapist in the management of dysphagia for a patient with the end of life palliative care

Over the last decade, and based on the high incidence of dysphagia in end of life palliative management, the role of Speech-Language Therapists in the management of dysphagia for end of life palliative patient care has been greatly recognized. Chahda, Mathisen & Carey (2017) agreed with the numerous scholars that identify SLTs’ primary role in dysphagia management as a rehabilitative role.   SLTs aims at achieving the following goals: improve the patients’ eating and drinking capabilities, promote healthy interactions between the patient and their family during meals, educate the patient and his/her family on effective swallowing tactics and prepare them for the expected decline in their health status. SLTs are also responsible for ensuring patients remain as lively as possible until their demise with optimizing the quality of life.

Despite most End of Life (EOL) patients suffering from swallowing difficulties, nutrition must still be maintained to support their already diminishing immunity. According to Chahda, Mathisen & Carey (2017), SLTs’ role in enhancing nutrition in such patients is of at most importance because SLT interventions will prevent the incidence of malnutrition and dehydration, which complicate the already challenging situation. According to Kelly et al., SLTs begin their role in dysphagia management by assessing the extent of the patients swallowing difficulties. Even after SLT determines that aspiration risk is not high, it is still necessary for them to conduct an instrumental swallowing assessment.

The swallowing assessment enables the SLT to create techniques that will optimize the patients feeding. SLT not only have to design appropriate feeding methods for the patients, but they also have to educate the patient and their family on the different techniques available and which one suits them best and why. SLT can use strategies such as careful hand feeding, positioning, and oral hygiene. Swallowing assessments must be maintained throughout the care period because they allow the SLT to adjust their goals depending on the patient’s progress. The swallowing evaluations conducted to determine which intervention method is appropriate for the patient. According to Gentile and Fello (1990), dysphagia caused as a result of mouth soreness, and nausea can be treated through medications.

Chahda, Mathisen & Carey,( 2017) also argued that as SLT strives to enhance their patient’s nutrition by making swallowing bearable, they divide their care strategies into three categories: aggressive life prolonged care, time-sensitive trials, and comfort care only. Aggressive life prolonged care is only implemented in dysphagia patients who suffer from illnesses that respond to curative treatment. In this context, the SLT can recommend the use of interventions such as Nil by Mouth (NBM) and Artificial Nutrition Hydration (ANH) such as nasogastric tubes (NGT )and percutaneous gastrostomy tubes (PEG). Time-sensitive trials follow the ‘wait and see’ principle. This route of care is adopted when the SLT has not yet identified the patients’ treatment goals. Common strategies to improve nutrition in this type of care include a liquid diet, safe swallowing strategies, and ANH. Comfort care is provided to end of life patients who are mainly concerned with enjoying their last days. SLT implementing this method follow the patients feeding preferences.

Scholarship by (Raijmakers et al., 2011) identified that 53-88% of invalids in the last stage of cancer implement ANH strategies to meet their nutrition needs. Ishiki et al. 2015 stated that the debate regarding the necessity and befits of ANH in EOL patients continues to draw more attention. Heuberger and Wong (2019) argued that the decision whether to implement ANH or not should be made based on the nature of the case, disease prognosis, and patient’s preference. The concept of ANH in EOL is dominated by the paucity of evidence to show its effectiveness in advancing quality of life.

Sharp and Genesen  (2013) poised that the education availed during treatment planning by the multidisciplinary palliative care team to the EOL patient and their family should be grouped into the following sessions: clinical symptoms, quality of life, contextual elements and patient preference. Medical indications aspect consists of the patient’s medical history, prognosis, and the predicted unimportance of the treatment plan. Education concerning the patient’s preferences entails discussions about the patient’s will, power of attorney, and treatment objectives. While the quality of life takes the influence of factors such as religion, cognitive, and psychosocial into consideration, contextual elements education focuses on influential factors such as family, legal guidelines, and culture. After the discussions, the invalid, their family, and the palliative care team then embark on identifying the best feeding or non-feeding alternative for the patient.

Scholars in favor of ANH argue that it significantly increases patient survival rate and also quells down dehydration-induced symptoms. Critics of the ANH feeding option poise that in spite of its numerous boons, ANH depends on tube placement, which often results in increased food retention symptoms. The critics also argue that swallowing challenges are among the components of natural death, and therefore clinical control interventions should be shunned. Modified diets are often recommended before the adoption of ANH methods.

In a surveyed study done by (Heuberger & Wong, 2019) measuring and comparing the education, stance, and claims concerning ANH usage between various health care professionals. Out of the 73 physicians included in the study, 33% favored the use of PEG tube while 21 preferred the use of NG tubes. Allied health care practitioners included in the survey reported a 32 % inclination to PEG tube and 49% favor of NG tubes. While 37 % of the physicians were confident that their feeding alternative would result in improved nutrition, 49 % of the health care professions shared this claim.

The scholars argued that paucity to be affected by clinical factors was the rationale for the participants feeding option preferences. The participants in the study demonstrated a common medical assumption where physicians and health care professionals with limited experience in palliative management tend to ignore the fact that tube feeding can be harmful to end of life patients and end up prescribing artificial nutrition as the best feeding option.

Although they claim that ANH prolongs patient’s lives, reduces aspirations, and enhances nutrition, these benefits are only limited to specific patient populations. Evidence ascertains that ANH is quite ineffective in patients battling chronic illnesses and those diagnosed with advanced chronic dementia. The majority of EOL patients die of dehydration rather than starvation; this pattern is caused by the propensity of EOL patient’s decline in desire for food and liquid. Patient legitimate their receding desire to eat by stating dehydration’s anodyne effect aids in improving their comfort levels. For patients experiencing dry mouth and thirst episodes, interventions such as administration of tiny water sips and great oral care can be implemented.

Levy et al. ( 2019) highlighted that inhibited aspiration is not always as a result of ANH, but factors such as pneumonia. Percutaneous endoscopic gastrostomy (PEG) feedings don’t inhibit aspiring of oral secretions; however, due to hyperalimentation, formula-fed is inclined to return to the food pipe and pharynx resulting in aspiration.

In addition to reduced ANH usage in hospice care, diagnostic dysphagia testing is also a rare practice in hospice settings. The following factors inhibit the use of diagnostic testing instability of patients such that they can’t withstand a clinical procedure, the futility of the diagnosis in altering the patient’s clinical management, and paucity of patient cooperation in the diagnostic testing.

Pollens (2012) poised that for life to have meaning, communication must be upheld, and since SLT aims at elevating their patients’ quality of life, it is in their jurisdiction to enhance conversations in end of life dysphagia patients. Factors such as agitation, disease trajectory, and fatigue, and the effects of medication can reduce patient’s communication abilities. Inability to communicate often increases the patient stress levels, which in more agitation and pain.

Both Pollens and Chanda agreed that for SLT to develop communication tactics for their patients, they must comply with the universal EOL communication goals. The first goal emphasizes the importance of ensuring close relationships are maintained between the EOL patient and their family or caregiver. The global goals also state that communication strategies adopted must enable the EOL patient to communicate their wants and wishes in regard to the daily care they receive. The final universal EOL communication goal requires SLT to equip the patient with the ability to show their will and concerns about dying.

When implementing communication therapy, SLT must recognize that the results will differ based on the patient’s alertness level, pain, and medication. To improve conversations, SLTcan design, and educate patients’ families on alternative communication strategies, which will help them understand and improve their conversations with the patient. The SLTcan also use augmentative communication such as pacing boards and computerized speech-generating devices. Improving a patient’s communication and ease of swallowing are vital steps in enhancing the patient’s dignity and quality of life. In his 2004 study, Pollens highlighted that developing alternative communication techniques for patients assisted them in adjusting to the reality of death. SLTs can encourage the patients to find closure in life by talking about death with their family and chaplains.

Kelly et al. expounded on SLTs’ role to improve the palliative patient’s life by reducing symptoms presented by the life-threatening disease. Pollens (2004) collaborated Kelly’s notion by stating that the conventional medical model required SLTs to promote optimal body functioning as part of dysphagia management. Although restoring normal body functioning is one of the major goals of dysphagia management, SLTs and palliative patients often choose to focus on the patient’s comfort over the regular physical operations. This stems from the shift in the role of SLT from rehabilitative to consultative role. In their advisory roles, SLTs identify methods to ensure that patients spend their last days in comfort and joy. For instance, SLT may decide to replace nonoral feeding methods with creative oral practices such as less bolus size and texture modification.

Gentile and Fello (1990) discovered that for most EOL patients, anorexia was the leading cause of dysphagia, and to solve this, SLT has to come up with creative methods such as mouth swaps with juice to ensure that patients are feeding. Despite having a low appetite enjoying food can be an incentive to have the patient feed more.  Such a decision allows the patient to enjoy food and also gives the family a chance to express their care by feeding the patient. SLTs can enhance the invalid’s quality of life by respecting their preferences, enhancing their communication, and developing tactics for them to enjoy food again.

Speech-language therapists managing dysphagia in hospice settings value the patients’ will since they allow patients to eat foods that they prefer even though the foods may prevent their aspiration. (Roe & George, 2016) argued that SLPs are educated on how to discover swallowing challenges and how to possibly eradicate these challenges by implementing both restitution and therapeutic interventions. The scholars also reinforced the claim that hospice care is primarily associated with the improvement of comfort and reduction of disease-induced manifestations. Given that SLPs and dieticians are responsible for availing advice to EOL palliative patients on the suitable food texture, they can recommend thickened food to the patients. Additional, artificial hydration and nutrition are used in minority dysphagia management cases in hospice settings.

Since external alternative tube feeding is not an obvious treatment for dysphagia, the decision to adopt it in a patient’s treatment plan should be after considering and analyzing the patient’s prognosis and preferences. If the medical condition necessitates the presence of such a solution, the SLPs should engage the patient and their family in an educative session where the patients are informed of all benefits and negative side effects associated with external tube feeding. A patient can also choose the better of these two feeding options by combining both modified diets and external tube feeding.

According to  Elackattu, & Walsh (2009) once the decision to adopt tube feeding exclusively, continue implementing oral feeding or a combination of the two feeding methods has been made the clinician should then take into account the risk factors for both dysphagia and pneumonia and include then in the patients’ treatment plan. The risk factors can include safe self-feeding practices, tough oral hygiene practices, and vigorous pulmonary toilet.

According to Pollens 2012 SLPs have the following roles in dysphagia management:

• Adopt feeding modifications that enhance a patient’s swallowing abilities as the reality of death sets in
• Encourage the patient’s family members to engage in interactive eating sessions with the invalid.
• Educate the patient and their family on issues concerning the patient’s condition and its symptoms such as swallowing challenges.
• Maintain continued communication with other members of the interdisciplinary palliative care team about the patient’s progress.

Sheltman (2013) argued that the management of dysphagia during the final care stage, SLP should honor the patient’s eating preferences even though their feeding options create the risk of aspiration. In his scholarship, Eckman (2015) concluded that SLPs’ role in dysphagia management consists of objective evaluation of swallowing challenges, provision of education to the patient and their family, dysphagia risk control, and implementation of safe deglutition guidelines.

SLP’s focus during dysphagia management can evolve to include risk factors for dysphagia, which significantly eliminates dysphagia induced symptoms that inhibit patient comfort. In their systematic literature review, Kelly et al. (2016) poised that objective dysphagia examination was not only efficient in aiding decision making process regarding potential aspiration risks but also essential in the development of guidelines to enhance the patient’s swallowing abilities.

Risk management in dysphagia treatment because of importance once SLPs identity that the risk of aspiration cannot be squashed during the process of optimizing the patient’s swallowing abilities.SLPs should conduct regular swallowing examinations so as to adjust the care plans according to the trajectory of the disease. Strategies in dysphagia management can include a range of facilitative and compensatory strategies such as safe positioning, diligent hand feeding, pulmonary sucking, and great oral care.

Patients and their families have to adopt an active role in decision making during palliative care since they decide on the foods the patient should take and which feeding method to adopt between oral and tube feeding. For the patients and their families to make effective decisions, SLPs must provide concrete information about dysphagia examinations and potential treatment alternatives. Through these educational sessions, the patient’s feeding preferences are identified and honored. The responsibilities of the SLTs in dysphagia are to

(1) Maximizing the invalid’s swallowing ability using feeding modifications.

(2) Encourage positive interactions between the patients and their families during meal times.

(3)  Avail support and knowledge to the patient’s family members concerning the patient’s life-threatening illness.

(4) Maintain regular discussions with other members of the interdisciplinary team about the patient’s progress.

Bogaardt ( 2018) highlighted that dysphagia management in palliative settings creates room for the patient and their family to decide on either oral feedings or artificial feeding. Gentile and Fello (1991) poised that the majority of the nutritional in competencies experienced by   end of life patients are as a result of nausea and mouth soreness brought about due to anorexia and vitamin paucity. They also termed anorexia as a challenging illness to treat using clinical means. The propensity to focus on EOL patients having positive food interactions and the goal of ensuring these patients procure pleasure from food rather than emphasizing on the nutritional requirements of the terminally ill patient make it challenging to treat anorexia clinically. SLPs providing care in palliative settings must, therefore, consider the implementation of safe deglutition practices while upholding the patient’s and their family’s preferences.

Kelly et al. described SLPs’ intervention approaches by distinguishing the former rehabilitative and reconstruction roles of SLPs to the current SLP roles that revolve around the provision of care and education about the chronic illness’ symptoms. The scholars also introduced the flexibility concept that requires SLPs to predict any changes in the patient’s functionality level. Through prediction and observation of changes, SLPs can alter their patient’s intervention objectives suitably.

Dysphagia’s canonical clinical model indicates that the primary objectives of dysphagia interventions include the elimination of threats such as dehydration, aspiration, and malnutrition, and the advancement of the patient’s general health. Curative interventions adopted by SLPs in dysphagia therapy revolve around optimizing the patient’s functionality levels, creation of strategies to recover lost functionality, and observation of the patient’s symptoms. Although most of these curative strategies can be adopted in the management of dysphagia in hospice settings, SLPs’ main focus should be improving patient comfort and honoring the patient’s will. (American Speech-Language-Hearing Association 2001)

Pollens, 2004 observed that in several cases, terminal patients choose to ignore physicians’ guidelines for nothing by mouth feeding (NPO) and decide not to implement non-oral feeding methods. Patients and their families may also favor the consumption of cultural foods during the patient’s last stage of life. While honoring the patient’s preferences, SLPs can recommend feeding strategies that eliminate any potential hazards associated with the chosen feeding alternative. Some of the strategies can include reduction of bolus quantity and slow feeding characterized by short breaks in between spoonfuls to allow swallowing to follow a more natural route. Given that feeding is among the simple pleasures of life, SLPs are tasked with the creation of strategies that enhance patients feeding satisfaction while enhancing patient safety. SLP’s role in supporting palliative patients enjoy food again is in line with general hospice care objectives.

• The role of the Speech-language Therapist in the education of patient and family members regarding dysphagia Management in Palliative care

Roe and George (2016) poised that in annexation to enhancing the lives of end of life patients, SLTs are responsible for providing support to the patient’s family or caregivers to reduce discomfort and provide an understanding of the process of dying. Kelly et al. argued that giving the family with meaningful information about what the patient is undergoing helps reduce their stress levels. The scholars suggested that SLTs’ education to the patient’s family should include the causes of dysphagia, its impacts on the patient, and the anticipated symptoms in the patient’s swallowing and communication capabilities. SLTs should also explain to the family the different feeding alternatives that are available for the patient, how to manage oral hygiene to the patient, and how to maintain and apply the feeding precautions strategies to the patient during feeding. They should also disclose the benefits and any potential side effects of the feeding methods.

Pollens (2012) also stated that SLTs have to train the patient’s family on how they can improve communication and the process of feeding with their relatives. To achieve this goal, SLTmust first ensures that the family fully understands the patient’s conditions. SLTs should have empathic talks with the family to make them accept the fact that their loved one is dying. The SLT can then recommended that the family interact more with the patient through activities such as brushing their hair, brushing their teeth, and writing them letters.

In his 2004 journal, Pollens elaborated that educating the family improves their participation in caring for the patient. With the right information about their patient’s condition, the family is in a better position to make informed decisions concerning the patient’s care. Educating them on how to use alternative communication methods enables them to learn and implement the patients dying wishes. Education provided to palliative care patients enables the family to get involved in improving the lives of their dying relative.

It has been suggested by Bogaardt et al. (2015) that swallowing interventions during the last stage of palliative care should focus more on the provision of information to the patient, their relatives, and nursing staff first then swallowing exercises. Moreover, involving family and sharing them is highly suggested when it comes to their hydration, nutritional status during, and swallowing difficulty (Roe & George, 2016).  Involving the family member and caregiver in the process of feeding the patients during meals will improve the quality of dysphagia care in the patient.

Generally, treatment interventions for dysphagia management in palliative settings are short- term where the major highlight of the intervention involves the education of invalids and their families on safe deglutition practices, preparation of modified diets, and the regular observation of aspiration risk factors. Since treatment interventions are required to be flexible, the patient and their family are also educated on how to reduce threats by modifying their patient’s diet and  restitution strategies

Various scholars outlined in several articles that family and caregiver knowledge should consist of: potential sources of, and ramifications on, deglutition impairment levels, expected changes in swallowing ability, the effects of disease progression on capacity to take oral nutrition and the implications of aspiration and how to identify it (Pollens, 2004) ( Pollens, 2012).

Scholars also suggest that education availed to both the patient and their family should comprise extensive discussions regarding the benefits and cons of enteric feeding alternatives, development of aspiration pneumonia, and the importance of effective nutrition. With information about these issues, the patients and their families are better placed to make sound decisions (Kelly et al., 2016). The speech-language pathologists are also tasked with the responsibility of creating environments that promote positive feeding interaction (Pollens 2004).

1.7 The role of the Speech-Language Therapist member in the Palliative care multidisciplinary team

For palliative care to significantly enhance the quality of a patient’s life, it should entail physical, intellectual, spiritual, and emotional assistance. Pollens (2012) explained the palliative care principle that requires the cooperation of different medical professionals while providing palliative care as a team. The policy dictates that for palliative care to be wholesome, various medical experts must be involved. Despite SLT’s role in palliative care being a relatively new discipline Chadha at el; argued that numerous scholars appreciate the role of SLT in the multidisciplinary team as vital since they assist in making decisions on curative interventions and also provide palliative care. Therefore it becomes vital for SLPs to work as a multidisciplinary team with other palliative care specialists (Roe & Leslie, 2010).

Although, in most settings, palliative patients are considered as a single population, each patient has different needs and dysphagia challenges. Chahda, Mathisen & Carey (2017) argued that being members of the palliative care team aids SLTs in creating goals and implementing each care plan. Most multidisciplinary teams consist of nurses, social workers, chaplains, SLTs, and physical therapists. Members of the group share their expert advice and design strategies that enable them to improve the patient’s comfort. Even though the patient’s family members are not part of the team, they have an active function in the provision of palliative care.

Pollens also argued that SLTs’ role in the multidisciplinary team has evolved over recent years. Traditionally, SLTs took up a rehabilitation role for patients battling with diseases that affect their cognition, swallowing, and communication capabilities.  SLTs’ rehabilitative part involved the setting of goals to improve the patient’s autonomy and reducing disease-induced impairments. The current palliative model requires SLTs to enhance the patient’s life while taking into consideration the patient’s physical and social status.

Pollen (2012) outlined consultation as one of the significant roles SLTs have as members of the interdisciplinary team. The consultation role was further divided into different dimensions. SLTs have to consult with the patients and their families on behalf of the team to determine what they prefer in terms of swallowing and communication. SLTs also consult with palliative patients when conducting assessments that determine the extent of the patient’s swallowing and communication concerns and impairments.

SLTs consult with their patients, especially those that are having communication difficulties. Consulting with them enables the SLT to discover a method in which the patient can use to converse with their families and other members of the palliative team. Speech-Language Therapists may decide on implementing alternative communication methods such as picture charts and voice output machines. Once the speech pathologist has identified the best communication method for the patient, they must train the patient and their family on how to converse using the chosen method.  In situations where palliative patients are unable to consume food, the little communication they can maintain with their family provides them with some relief. Pollens (2004) also argued that SLTs improve patient communication since human connection through communication is identified as one of the eight elements that promote quality life.

The consultation also occurs as SLTs conduct patient assessments, and as they discuss with the patient and their family of the assessment results. Speech-language pathologists also have to relay the endpoints of the evaluation to the other team members. Effective communication among the team enables the team to offer support to the palliative patients. Once the SLTinforms the other members of the endpoints of the assessment, the team can then use their expertise to determine which treatment options are best suited for the patient. For the team members to achieve their common goal, effective communication between them must be maintained.

In addition to the consultation role, Sheltman explains that SLTs have the role of affirming life and normalizing death. While administering hospice care to patients who are in the last phase of their lives, SLTs have to be compassionate and sincere. In addition to providing technical assistance in communicating and swallowing, SLTs have to be emotionally present for their patients. They can express compassion by sitting close to the patients and treating the patients as if they were their own family. Being around the end of life, patients regularly can be emotionally frustrating for SLTs. For SLTs to successfully affirm life and normalize death, they need to watch their mental health to avoid psychological fatigue.

In a multidisciplinary team, SLT’s primary role is to consult. They consult with the invalid to discover the patient’s preferences and the extent of dysphagia in the patient. They then relay this information to the other team members who, together with the SLP, create a palliative care plan. Once the plan is created, the SLTthen communicates the plan and obtain consent from the patient.

Pollens (2012) suggested that SLPs should engage in the following activities to promote recognition of their responsibilities in palliative care settings:

1. Market their services to both gist and non-gist hospice team members so that they are informed about the services SLPs can offer to their palliative care patients.
2. Taking an active role in the interdisciplinary team to ensure their services as deemed as collaborative instead of independent.
3. Informing other health care professionals about the services SLPs can provide in palliative care settings by through workshops and in-services, while simultaneously learning from other health care professionals concepts associated with end of life care.

SLTs meeting with interdisciplinary team enables hospice team members to complement each others’ roles, brainstorm when faced with complex challenges and avail mini services. (Martinez, 1996). According to Rahman (2000), SLPs lack recognition is as a result of the notion that SLPs are not gist members of the palliative care team and thus face numerous challenges due to this perception.

Pollens 2004 indicated that SLPs   communication duties among the interdisciplinary palliative care team include:

• Provision of information to the gist team members about dysphagia examination results and reasoning behind strategies adopted
• Provision of education concerning strategies implemented in the patient’s care plan
• Implementing information from other team members regarding the patients’ treatment plan.

1.8 The knowledge and education required by the Speech-Language therapist in the palliative care

For SLTs to acquire clinical knowledge and expertise needed to participate in palliative care, they must first acquire professional palliative care knowledge. Literature by Roe & George argued that SLTs are trained on how to assess patients to determine the degree of their swallowing and communication challenges. SLTs are also educated on the therapeutic interventions they should implement to reduce the swallowing and communication difficulties experienced by palliative patients.

Research conducted by Pascoe, Breen & Cocks, (2018) discovered that most Speech-Language Pathologists felt inadequately trained to practice in palliative settings. Of the 143 respondents of the study, only 27% had obtained palliative care training while in university. The SLT respondents who had procured palliative training reported that the practice was not a course or specific lesson. The concepts of palliative care were only mentioned during the dysphagia and ethics lecture sessions. Even though palliative training is necessary for SLTs to practice in palliative settings, most universities do not include palliative training as a core element of speech pathology.

Research by Mathisen, Yates & Crofts, (2010) also argues that a considerable gap exists in the knowledge and education provided for SLTpractising in palliative care. To fill the gap, an Australian government agency designed a pilot study where medicine, nursing, and other health care professional students at Queens University received palliative care training. The results of the study were recorded in Mathisen, Yates & Crofts, research paper. Through the study, it was identified that some core elements of palliative care had been included in the speech-language pathology curriculum. These elements include the vital principles of palliative practice, the importance of communication, ethical considerations, and sensitivity when handling death and life-threatening conditions. In spite of the study attracting few volunteers, all the respondents recorded an increase in knowledge and confidence in managing palliative patients.

While most courses do not offer palliative knowledge, their primary focus is on the legal and ethical considerations that should be exercised when providing palliative care. Kelly et al.  suggested that the emphasis on legal and ethical considerations results from the potential conflict between SLTs and patients on the choice of treatment interventions. Disputes often arise when patients decide to ignore advice from SLTs on the best treatment alternative for them. Even though SLTs are expected to act in beneficence, they are legally supposed to respect the patients’ right to make decisions about their treatment plans.

Although theoretical education and knowledge are vital for SLTs, without hospice care experience, SLTs are unable to grasp what their role as palliative team members entails fully. In their study, Potter, Schneiderman, and Gibson (1979) argued that without personal experience, SLTs fail to understand how the concept of EOL impacts the patients and their families’ decision-making process. Palliative care experience ensures the SLTs are adequately trained to consult with palliative patients and their families. Currently, SLTs fresh from school have to learn palliative care practices from their experienced colleagues.

To ensure that SLTs are sufficiently prepared to take up responsibilities as palliative care team members, several scholars have advocated for changing the current education they receive. Scholars such as Chahda, Mathisen & Carey (2017) advocate for the inclusion of palliative thinking in theoretical knowledge provided by universities. Eckman & Roe suggested that core palliative care principles should be taught in both undergraduate and postgraduate training. Chahda, Mathisen & Carey, (2017) also recommended that SLTs courses should also include supervision and mentorship during placements. Through the internships, SLTs in training can acquire personal experience, which will enable them to care for dying patients sufficiently.

In a mixed study method done by (Tan, Gan, Hum, & Lee, 2018) investigating the barrier to dysphagia care it was outlined that the knowledge insufficiency and training of the nurses and clinician was a major challenge implementation of  SLPs objectives in palliative care and that an hour of training greatly improved SLPs skills and confidence when providing palliative care to terminally ill patients. Eckman and Roe (2005) poised that lack of SLP training on how to handle end of life patients causes the SLPs to rely on other health care professionals working in hospice settings for this knowledge. To ensure that SLPs are ready and qualified to handle the palliative burden, more education should be availed concerning palliative care practices. In his 2005 article, Eckaman posited that extensive education concerning core palliative care concepts should be aggregated in SLPs curriculum syllabus for both undergraduate and postgraduate SLP courses. Knowledge about these basic principles will ensure SLPs effectively comprehend their role and distinguish hospice care from other treatment interventions.

Scholars such as Chahda et al. (2017) and O’Reilly & Walshe (2015) observed that several SLTs practicing in palliative settings admitted that they felt uncertain as to what their obligations in palliative care entail. This uncertainty stemmed from the fact education concerning core principles of palliative care was provided in limited SLPs degrees ((Mathisen, Yates, & Crofts, 2011; Pascoe, Breen, & Cocks, 2018). Both Eckman & Roe (2005) concurred with Pollens (2012) recommendation that medical supervision, mentoring, and self-directed learning of the palliative care principles significantly advanced the SLPs’ capabilities and confidence levels when practicing in hospice settings.

Kelly et al. (2016), also observed that the majority of SLTs providing palliative care are ill-prepared when it comes to handling end of life concepts. The scholars argue that this unfortunate trend is a result of undergraduate and postgraduate programs paucity to include the topic of death and strategies to enhance the quality of life even as death fast approaches. Mathisen, Yates, & Crofts, (2010) claim that adopting topics that stimulate palliative thinking in SLPs educational programs through professional lectures and multimedia training can significantly aid SLPs in feeling ready enough to work in palliative care settings. SLPs students also recognized the significance of palliative care knowledge in aiding them effectively managing end of life patients and ensuring that the concept of death doesn’t take a toll on both themselves and their job. The students favor learning techniques such as self-directed education, classrooms, lectures, and casual discussions about death with health care professionals who practice in hospice care.

In an online questionnaire study survey done by (Pascoe, Breen, & Cocks, 2018)with the aim of gathering information from practicing speech pathologists in Australia, 70% of participants recognized the failure of their graduate and postgraduate programs in educating them about basic palliative care principles and guidelines.  The few participants who obtained hospice care education in advanced and higher learning institutions revealed that they were significantly equipped to handle end of life patients when compared with the majority of participants who didn’t procure palliative care education.  The participants with palliative care knowledge also concurred with other scholars in recommending the aggregation of palliative care knowledge in the university curriculum at both graduate and postgraduate levels. Although palliative care knowledge was not extensively taught, most participants indicated that the concept of palliative care was occasionally mentioned in various lectures such as ethics, counseling, and dysphagia.

The Mann–Whitney U-test employed in the online questionnaire study survey indicated that only SLPs who had received palliative care education in higher learning institutions felt significantly equipped to provide palliative care. Those participants who benefited from palliative care knowledge expressed a mean rank of 99.18, given that their population was 39. With a population of 104 participants, those SLPs who did not obtain palliative care training resulted in a mean of 61.81.

In an attempt to increase the confidence levels of graduate SLPs in the provision of palliative care, practicing SLPs were requested to suggest palliative care topics that would benefit the graduates if they were included in graduate and post-graduate curriculums. A fifth of the practicing SLPs recommended that dysphagia topics included should also relate to measures to improve the quality of life and eliminate feeding risks (Pascoe, Breen, & Cocks, 2018). Without proper preparation on how to deal with the concept of death in palliative care, SLPs and other health care professionals may suffer from anxiety, burn out and stress

1.9 The role and current practices recommended of the Speech and Language Therapist in palliative care in the Kingdom of Saudi Arabia

In spite of palliative care being a relatively new field in Saudi Arabia, over the last two decades, the area has achieved tremendous growth. In their journal, Alshammary, Anbar, Duraisamy & Abdullah, (2014) argued that the high Cancer incidence in the kingdom is responsible for the advancement of palliative care in Saudi Arabia. Dr. Isbister is recognized as one of the founders who introduced palliative care services at the King Faisal Specialist Hospital and Research Centre back in 1990. In its early years, the palliative care center was characterized by a lack of resources. However, the center has grown from a two-bed hospital into a center that provides both home care services and adult inpatient and outpatient palliative care. Given that it’s a new field, lack of literature on the current palliative practices inhibit the success of most palliative centers.

Similarly to palliative care, Speech-Language Pathology is also a new profession in the kingdom. Although SLT provides palliative care in Saudi Arabia, literature about their current practices is almost nonexistent. As SLTs provide palliative care to patients, they are expected to uphold Muslim laws since the majority of the citizens are of the Muslim faith. According to  Hafiz (2017), Muslims view diseases as Allah’s way of testing their faith. This belief gives the patient and their family comfort. Given that they believe that God is the ultimate healer, the SLT must modify their palliative care plan to incorporate the five daily prayers as directed by the Qur’an. SLT must also respect Muslim tractions, such as the use of Holy water during prayer during the provision of palliative care.

Due to the belief that those who suffer in sickness will get rewarded after death together with their families, Muslim families value being involved in caring for their sick relatives. The SLTshould, therefore, ensure the family is not only involved in decision making but also taking care of the patients through means such as spoon-feeding the patients. In their study, Gray, Ezzat & Volker, (1995) also shared the perspective that families in South Arabia value looking after their sick relatives. Due to the belief that the family has a religious duty to take care of a sick relative, consent required for decision making is obtained from the family. Unlike in most countries where the patient gives consent before decisions concerning them in South Arabia, members of the family made the decisions for the patient. This practice is justified by the principle of beneficence, which in this context, the invalid is deemed as a part of the large family which is responsible for all family members.

Research aim

This research aims to explore the everyday practices of SLTs who engage in palliative care settings in Saudi Arabia. The study also determines the level of knowledge SLTs in palliative care. Through the study, researchers can compare the similarities and differences among the current practices in Saudi Arabia and the recommended practices in the literature. This will allow the Speech-Language Therapist representatives in Saudi to develop a national consensus in the practice of Speech-language therapist in the scope of end of life palliative care.

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World Health Organization. (2012). International Classification of Functioning, Disability and Health (ICF). Retrieved May 1, 2011, from http://www .who.int/classifications/icf/en/

Samantha Eckman, J. R. (2005). Speech and language therapist in palliative care.pdf. International Journal of Palliative Nursing, 11(4), 179–181.

Sharp HM, Bryant KN (2003) Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang 24(4): 285–99

Guidelines PDF references

• National Cancer Center. (2018).Saudi Palliative Care National Clinical Guideline for Oncology. Retrievedfromhttps://www.shc.gov.sa/ar/NCC/Documents/Saudi%20Palliative%20Care%20National%20Clinical%20Guideline%20for%20Oncology.pdf
• National Institute for health and care excellence. (2019).End of life service delivery. Retrieved from https://www.nice.org.uk/terms-and-
• World health organization (2004). Palliative Care: symptom management and end-of-life care ; Interim guideline for first level health facility health worker. Retrieved from https://www.who.int/hiv/pub/imai/genericpalliativecare082004.pdf
• British Geriatric Society .(2018) . Dysphagia management for older people towards the end of life. Retrieved from https://www.bgs.org.uk/resources/dysphagia-management-for-older-people.
• National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. retrieved from https://www. nationalcoalitionhpc.org/ncp.
• The National Clinical Program for palliative care.(2018). Adult Palliative Care Service Model of care For Ireland. Retrieved https://www.hse.ie/eng/about/who/cspd/ncps/palliative-care/=
• North of England Cancer Network.(2012) Palliative and end of life care Guidelines for cancer and non-cancer patient. Retrieved; https://southtees.nhs.uk/content/uploads/NECN-palliative-care-guidelines.pdf

• North of England Cancer Network. (2016) Palliative and end of life care Guidelines symptoms control for cancer and non-cancer patient. Retrieved ; http://www.northerncanceralliance.nhs.uk/wp-content/uploads/2018/11/NECNXPALLIATIVEXCAREX2016-1.pdf

• Palliative Care Competence Framework Steering Group. (2014). Palliative Care Competence Framework. Dublin: Health Service Executive. Retrieved https://www.hse.ie/eng/services/publications/clinical-strategy-and-programmes/palliative-care-framework-document.pdf
• End of Life Resources and References. (2010). Retrieved 2020, from https://www.asha.org/SLP/End-of-Life-Resources/