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Receptive CommunicationExpressive CommunicationAugmentative and Alternative Communication (AAC)What is Communication?"Communication is the process of exchanging information and ideas" (Owens, 2002, p. 30). It involves relating to others, affecting people and letting people affect you (Light, 1997). Light (1988) claims that the four main purposes of communication are exchanging information, conveying wants and needs, establishing social closeness and adhering to social etiquette.Communication in Palliative CareIn palliative care effective communication with clients is vital (Faulkner, 1998; Pollens, 2004; Forbes, 1997; Kinlaw, 2005; Salt & Robertson, 1998). It is crucial that a person facing various life-altering decisions is able to comprehend and communicate their decisions regarding all aspects of their care (Abu-Saad & Courtens, 2001). Honest and open communication between the palliative care team and the client can calm the client, increase client satisfaction, and assist them to make decisions and plan for the future (Faulkner, 1998; Pollens, 2004; Kinlaw, 2005).Communication Within the Palliative Care TeamEfficient communication with clients and other members of the palliative care team is imperative (Faulkner, 1998; Sweeney & Bruera, 2002; Pollens, 2004; Norton, Tilden, Tolle, Nelson & Eggman, 2003).The palliative care team should conduct regular meetings to ensure the maintenance of effective communication (Kinlaw, 2005; Faulkner, 1998; Tulsky, 2005). These meetings will reduce misunderstandings and disagreements within the palliative care team (Tulsky, 2005; Faulkner, 1998). During these meetings, the speech pathologist can educate other palliative care team members about the strategies devised to aid the client's communication (Pollens, 2004; Knauft, Nielsen, Engelberg, Patrick & Curtis, 2005; Miteff, 2001). These meetings should also involve the client and their family where possible, to allow them to receive recent information regarding the client's status (Norton et al., 2003). All communication in such meetings should be provided in lay terms, and an opportunity for families to voice their concerns should be provided (Norton et al., 2003). The speech pathologist should ensure that the client can participate in advance care planning in palliative care (Tulsky, 2005; Kinlaw, 2005). Advance care planning is described as the process whereby a client is encouraged to contemplate their preferences for care, as well as discuss these preferences with others (Kinlaw, 2005; Tulsky, 2005; Pollens, 2004). This planning should then be reviewed regularly and adjusted accordingly to meet with the client's needs (Pollens, 2004). Having such an open discussion will allow family to make decisions that are congruent with the client's wishes (Tulsky, 2005). From the advance care planning, legal documents can be drafted that represent the client's wishes for their care (Tulsky, 2005). Documenting the wishes of the client will facilitate a consensus of future action between the health care team, the client and the client's family (Tulsky, 2005). Common Communication Difficulties in Palliative CareIn a study of clients with cancer of the head and/or neck by Forbes (1997), communication difficulties were reported in 53% of clients.In a study of 12 oncology clients (cancer type not specified), Salt and Robertson (1998) identified difficulties in the following communicative areas:
ConsiderationsClients who are adjusting to their diagnosis may express various emotions, including anger, stress, anxiety, denial and blame (Norton et al., 2003; Faulkner, 1998). These emotions are understandable, but can jeopardise communication (Norton et al., 2003; Faulkner, 1998). Norton et al. (2003) report that such emotions can result in:
By addressing the affect of the client, clinicians can improve communication at the end-of-life (Tulsky, 2005; Back & Curtis, 2001). There will be highly emotive discussions with the palliative client and their families and/or friends (Lang & Quill, 2004). The feelings of all involved should be addressed and dealt with (Lang & Quill, 2004; Faulkner, 1998). Speech pathologists must also consider that the communicative ability of the palliative client can fluctuate (Salt & Robertson, 1998; Jackson, Robbins & Frankel, 1996). Side effects of medication and treatments can impact on the client's fatigue, cognition, concentration, mood, memory and level of alertness (Jackson et al., 1996) and consequently hinder their communication (Salt & Robertson, 1998). The speech pathologist needs to be aware of these factors and try to accommodate them. For example, if a client fatigues easily, the clinician should plan sessions or meetings for the morning when the client may be more able to participate. Communication and CultureA client's cultural orientation will influence their communication style (Sweeney & Bruera, 2002; Knauft et al., 2005; Payne & Taylor, 2002; Bowman, 2000). For example, death is a taboo subject in some cultures (Knauft et al., 2005; Yam, Rossiter & Cheung, 2001), and therefore discussing the client's prognosis could be difficult for that client.Sweeney & Bruera (2002) suggest that future research should focus on communication approaches that health care professionals could employ when working with clients from various cultural backgrounds. The speech pathologist must select appropriate standardised assessments that are sensitive to the client's culture (Payne & Taylor, 2002). When explaining the findings and recommendations, the speech pathologist should use a communication style that is consistent with the client's culture (Payne & Taylor, 2002). For clients with limited English proficiency, an interpreter may be required, bringing about added complexities (Chan & Woodruff, 1999). The Speech Pathologist, Communication and Palliative CareThe Communication Bill of Rights stipulates that all people have a right to communicate (National Joint Committee for the Communicative Needs of Persons with Severe Disabilities, 1992). See http://www.sesa.org/newsltr/spring96/billofrights.html.The role of the speech pathologist is to ensure that a person with palliative needs always has a viable means of communication where possible (Balandin, 2003). Speech pathologists do this by assessing and managing all communication difficulties, either directly with the client, or indirectly with his/her family and staff (Eckman & Roe, 2005). The aim of all speech pathology interventions in palliative care should be to enhance and maintain the client's quality of life (Eckman & Roe, 2005; Pollens, 2004). Decision Making in Palliative CareClients will face a number of decisions across the course of their palliation (Tulsky, 2005). However, communication difficulties and deficits may impede a client's decision making ability (Pollens, 2004).Clients may take on a passive role in decision making if they are lacking information (Sweeney & Bruera, 2002). Clients who are fully informed may feel more empowered to actively participate in the decision-making process (Sweeney & Bruera, 2002). The client needs to receive current accurate information to base decisions on, and he/she must also be presented with a range of options (Miteff, 2001). Then, once informed decisions regarding treatment have been made by the client, these wishes must guide the management provided (Tulsky, 2005; Miteff, 2001; Bowman, 2000). This relates to an ethical principle; honouring a client's autonomy (Tulsky, 2005; Parker et al., 2005; Kinlaw, 2005; SPA, 2002; Bowman, 2000; SPA, 2000). See ETHICS. The decisions made may change with time and with the progression of the disease (Sweeney & Bruera, 2002; Wilkinson et al., 1999). Ongoing assessments of client preferences are therefore required (Pollens, 2004; Sweeney & Bruera, 2002). Speech pathologists should facilitate the active involvement of all palliative clients in decision making for as long as possible (Hemsley & Balandin, 2003; Salt & Robertson, 1998). When a client is able to participate in clear decision making, their quality of life is optimised during the end-of-life period (Tulsky, 2005; Back & Curtis, 2001). ReferencesAbu-Saad, H., & Courtens, A. (2001). Developments in palliative care. In H. Abu-Saad (Ed.), Evidence-based palliative care across a lifespan. (pp. 4-13). Oxford: Blackwell Science Ltd.
Back, A., & Curtis, J. (2001). When does primary care turn into palliative care? Western Journal of Medicine, 175(3), 150-151. Balandin, S. (2003). Functional communication - not a last resort. Acquiring Knowledge in Speech, Language and Hearing, 5(1), 10-12. Bowman, K. (2000). Communication, negotiation, and mediation: Dealing with conflict in end-of-life decisions. Journal of Palliative Care, 16, S17-S24. Chan, A., & Woodruff, R. (1999). Comparison of palliative care needs of English- and non-English-speaking patients. Journal of Palliative Care, 15(1), 26-30. Eckman, S., & Roe, J. (2005). Speech and language therapists in palliative care: what do we have to offer? International Journal of Palliative Nursing, 11(4), 179-181. Faulkner, A. (1998). ABC of palliative care: Communication with patients, families, and other professionals. British Medical Journal, 316(7125), 130-132. Forbes, K. (1997). Palliative care in patients with cancer of the head and neck. Clinical Otolaryngology, 22, 117-122. Hemsley, B., & Balandin, S. (2003). Disability, dysphagia, and complex communication needs: Making room for communication in ethical decisions about dysphagia. Advances in Speech-Language Pathology, 5(2), 125-129. Jackson, P., Robbins, M., & Frankel, S. (1996). Communication impediments in a group of hospice patients. Palliative Medicine, 10, 79-80. Kinlaw, K. (2005). Ethical issues in palliative care. Seminars in Oncology Nursing, 21(1), 63-68. Knauft, E., Nielsen, E., Engelberg, R., Patrick, D., & Curtis, J. (2005). Barriers and facilitators to end-of-life care communication for patients with COPD. Chest, 127(6), 2188-2196. Lang, F., & Quill, T. (2004). Making decisions with families at the end of life. American Family Physician, 70(4), 719-723. Light, J. (1988). Interaction involving individuals using augmentative and alternative communication: State of the art and future research directions. Augmentative and Alternative Communication, 4, 66-82. Light, J. (1997). "Communication is the essence of human life": Reflections on communicative competence. Augmentative and Alternative Communication, 13, 61-70. Miteff, L. (2001). Palliative care ethics: Autonomy in aged care. Australian Nursing Journal, 9(6), CU1-CU4. National Joint Committee for the Communication Needs of Persons with Severe Disabilities (1992). Communication Bill of Rights. Retrieved September 12, 2005, from http://www.sesa.org/newsltr/spring96/billofrights.html Norton, S., Tilden, V., Tolle, S., Nelson, C., & Eggman, S. (2003). Life support withdrawal: Communication and conflict. American Journal of Critical Care, 12(6), 548-555. Owens, R. (2002). Development of commmunication, language and speech. In G. Shames & N. Anderson (Eds.), Human Communication Disorders: An introduction (6th ed., pp. 28-69). Boston: Allyn and Bacon. Payne, K., & Taylor, O. (2002). Multicultural influences on human communication. In G. Shames & N. Anderson (Eds.), Human Communication Disorders: An introduction (6th ed., pp. 106-140). Boston: Allyn and Bacon. Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7(5), 694-702. Salt, N., & Robertson, S. (1998). A hidden client group? Communication impairment in hospice patients. International Journal of Language and Communication Disorders, 33, 96-101. Sweeney, C., & Bruera, E. (2002). Communication in cancer care: Recent developments. Journal of Palliative Care, 18(4), 300-306. Tulsky, J. (2005). Beyond advance directives: Importance of communication skills at the end of life. Journal of the American Medical Association, 294(3), 359-365. Wilkinson, E., Salisbury, C., Bosanquet, N., Franks, P., Kite, S., Lorentzon, M., & Naysmith, A. (1999). Patient and carer preference for, and satisfaction with, specialist models of palliative care: A systematic literature review. Palliative Medicine, 13, 197-216. Yam B., Rossiter J., & Cheung K. (2001). Caring for dying infants: experiences of neonatal intensive care nurses in Hong Kong. Journal of Clinical Nursing, 10(5), 651-659. Receptive CommunicationThe Speech Pathologist and Receptive LanguageThe role of the speech pathologist includes assessing receptive language and providing appropriate recommendations (Eckman & Roe, 2005; Pollens, 2004). This is an important aspect of a speech pathologist's involvement as a client's receptive ability may deteriorate with the progression of their condition (Tulsky, 2005; Parker et al., 2005).Misinterpretation often occurs in the health care setting (Tulsky, 2005; Bowman, 2000). Clients often misunderstand information conveyed throughout an oncology consultation, especially when clients and their families are in an emotionally-charged state (Bowman, 2000; Tattersall, Butow & Ellis, 1997). Speech pathologists also contribute to the decision-making capacity of the client (Kinlaw, 2005; Pollens, 2004). AssessmentA brief screen of the client's receptive abilities is recommended when preparing to discuss their care (Faulkner, 1998). Other practising speech pathologists* support the use of informal tools to assess comprehension. In addition, some of these clinicians reported using the following standardised tests such as:
Once the receptive level of functioning has been established, the speech pathologist needs to be aware that this status may alter over time (Faulkner, 1998). Therefore, clinicians need to monitor it accordingly through regular screenings (Pollens, 2004; Sweeney & Bruera, 2002). When the client's assessment results are being discussed with them, the speech pathologist should adjust the pace of information exchange to meet with the client's ability (Faulkner, 1998) and their culture's style of communication (Payne & Taylor, 2002). Due to the nature of palliative care, rigorous assessments may not be warranted*. InterventionThe intervention for impaired receptive communication will need to suit the specific impairments seen in each client.Speech pathologists* working in the field of palliative care have recommended using the following treatments to aid comprehension:
ReferencesBalandin, S., & Morgan, J. (2001). Preparing for the future: Ageing and AAC. Augmentative and Alternative Communication, 17, 99-108. Bowman, K. (2000). Communication, negotiation, and mediation: Dealing with conflict in end-of-life decisions. Journal of Palliative Care, 16, S17-S24. Eckman, S., & Roe, J. (2005). Speech and language therapists in palliative care: what do we have to offer? International Journal of Palliative Nursing, 11(4), 179-181. Faulkner, A. (1998). ABC of palliative care: Communication with patients, families, and other professionals. British Medical Journal, 316(7125), 130-132. Goodglass, H. (2001). The assessment of aphasia and related disorders. (3rd ed.). Philadelphia: Lippincott Williams & Wilkins. Hemsley, B., & Balandin, S. (2003). Disability, dysphagia, and complex communication needs: Making room for communication in ethical decisions about dysphagia. Advances in Speech-Language Pathology, 5(2), 125-129. Kertesz, A. (1982). Western Aphasia Battery. New York: Grune & Stratton. Kinlaw, K. (2005). Ethical issues in palliative care. Seminars in Oncology Nursing, 21(1), 63-68. Miteff, L. (2001). Palliative care ethics: Autonomy in aged care. Australian Nursing Journal, 9(6), CU1-CU4. Payne, K., & Taylor, O. (2002). Multicultural influences on human communication. In G. Shames & N. Anderson (Eds.), Human Communication Disorders: An introduction (6th ed., pp. 106-140). Boston: Allyn and Bacon. Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7(5), 694-702. Sweeney, C., & Bruera, E. (2002). Communication in cancer care: Recent developments. Journal of Palliative Care, 18(4), 300-306. Tattersall, M., Butow, P., Ellis, P. (1997). Meeting patients' information needs beyond the year 2000. Support Care Cancer, 5, 85-89. Tulsky, J. (2005). Beyond advance directives: Importance of communication skills at the end of life. Journal of the American Medical Association, 294(3), 359-365. Expressive CommunicationThe Speech Pathologist and Expressive LanguageAll clients should have a means of communicating their wishes (Miteff, 2001). Whilst this may not always be possible, the speech pathologist should consider this as a communicative goal for the client*.The role of the speech pathologist includes assessing the expressive language ability of the person with palliative needs and making appropriate recommendations (Pollens, 2004; Eckman & Roe, 2005). More specifically, the speech pathologist should enable clients to communicate their social, physical, spiritual and psychological needs (Eckman & Roe, 2005; Sweeney & Bruera, 2002; Miteff, 2001; Bowman, 2000). As Eckman and Roe (2005) affirm, speech pathologists should, "make realistic, flexible goals with patients that anticipate future needs, aiming to maximize function and independence" (p. 180). AssessmentAs stated earlier, the palliative client's communicative ability can vary (Salt & Robertson, 1998; Jackson, Robbins & Frankel, 1996). Therefore, continued assessments of a client's expressive capability are warranted in palliative care (Pollens, 2004; Sweeney & Bruera, 2002).Speech pathologists may choose to assess expression informally during their sessions, however the following standardised tests have also been suggested*:
Extensive assessments may not be suitable for palliative clients given the nature of their condition(s)*. InterventionAs with all speech pathology interventions, the specific expressive communication treatment will need to be tailored to the particular presentation of each client.Speech pathologists* have suggested managing expressive impairments with the following:
ReferencesBowman, K. (2000). Communication, negotiation, and mediation: Dealing with conflict in end-of-life decisions. Journal of Palliative Care, 16, S17-S24.
Eckman, S., & Roe, J. (2005). Speech and language therapists in palliative care: what do we have to offer? International Journal of Palliative Nursing, 11(4), 179-181. Goodglass, H. (2001). The assessment of aphasia and related disorders. (3rd ed.). Philadelphia: Lippincott Williams & Wilkins. Jackson, P., Robbins, M., & Frankel, S. (1996). Communication impediments in a group of hospice patients. Palliative Medicine, 10, 79-80. Kertesz, A. (1982). Western Aphasia Battery. New York: Grune & Stratton. Knauft, E., Nielsen, E., Engelberg, R., Patrick, D., & Curtis, J. (2005). Barriers and facilitators to end-of-life care communication for patients with COPD. Chest, 127(6), 2188-2196. Payne, K., & Taylor, O. (2002). Multicultural influences on human communication. In G. Shames & N. Anderson (Eds.), Human Communication Disorders: An introduction (6th ed., pp. 106-140). Boston: Allyn and Bacon. Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7(5), 694-702. Miteff, L. (2001). Palliative care ethics: Autonomy in aged care. Australian Nursing Journal, 9(6), CU1-CU4. Salt, N., & Robertson, S. (1998). A hidden client group? Communication impairment in hospice patients. International Journal of Language and Communication Disorders, 33, 96-101. Sweeney, C., & Bruera, E. (2002). Communication in cancer care: Recent developments. Journal of Palliative Care, 18(4), 300-306. Augmentative and Alternative Communication (AAC)What is AAC?Beukelman and Mirenda (1998) describe augmentative and alternative communication (AAC) as any technological or non-technological device or method used to improve or replace an individual's communicative abilities. AAC encompasses facial expressions, body language, photos, spelling, sign language, alphabet boards and computer devices (Balandin, 2003).Augmentative and alternative communication strives to optimise an individual's participation in a social capacity (Beukelman & Mirenda, 1998). Goals of AAC use should always be functionally oriented (van de Sandt-Koenderman, Wiegers & Hardy, 2005; Iacono, 2004; Hemsley & Balandin, 2003; Balandin, 2003). Speech pathologists need to assess and then implement an AAC system that is most suitable for the client (Balandin, 2003; Light, 1997). AssessmentIt is paramount that that the speech pathologist develops an AAC system in consultation with the AAC user, his/her family and friends, and other professionals involved in the client's care (Pollens, 2004; Beukelman & Mirenda, 1998). The speech pathologist will conduct an assessment of the client's abilities to determine what AAC interventions would be most suitable (Light, 1997)"Appropriate assessment will guide appropriate intervention" (Balandin, 2003, p. 11). The AAC device or system must consider the individual's sensory and motor functioning, cognition, and linguistic competence (Beukelman & Mirenda, 1998). Other considerations include the individual's existing mode of communication as well as his/her ability to manage and maintain the device (Beukelman & Mirenda, 1998). The speech pathologist will monitor the client's progress and continue to assess the client's communicative needs to ensure he/she maintains an effective mode of communication (Balandin, 2003). InterventionAs a result of the assessment, an AAC system is tailored to meet the individual needs of each client (van de Sandt-Koenderman et al., 2005; Balandin, 2003). The speech pathologist will implement AAC strategies and devices that are appropriate to the individual's current status and strengths (van de Sandt-Koenderman et al., 2005; Pollens, 2004; Light, 1997).The palliative client may require different AAC forms to function in different situations (Hemsley & Balandin, 2003; Balandin, 2003). Therefore, if the primary AAC device becomes unavailable or non-functional, another means is made accessible for the client (Balandin, 2003). Palliative care teams must be wary however that an existing method of AAC might not be suitable, or possible, for the future (Beukelman & Mirenda, 1998). Forward planning should address the prediction of likely capabilities of the palliative client and the AAC system should adjust accordingly (Beukelman & Mirenda, 1998). The speech pathologist must ensure that the AAC allows the client to communicate during the progression of their disease (Hemsley & Balandin, 2003). This will involve the speech pathologist training the client and his/her caregivers on the effective use of the selected AAC system (van de Sandt-Koenderman et al., 2005). The role of the speech pathologist also encompasses educating other professionals (e.g. nursing staff) on the workings of the AAC device (Beukelman & Mirenda, 1998; Pollens, 2004). Evidence-Based Practice in AACIt is difficult to ascertain evidence-based AAC interventions, primarily due to AAC's diversity and its only recent implementation (Iacono, 2004).Iacono (2004) asserts that the 'Augmentative and Alternative Communication' journal is the key basis for current evidence-based practices in the field of AAC. However, she also comments that currently there is a paucity of research focusing on the effectiveness of AAC intervention, maintenance and generalisation of AAC, and the impact of AAC in typical situations (Iacono, 2004). ReferencesBalandin, S. (2003). Functional communication - not a last resort. Acquiring Knowledge in Speech, Language and Hearing, 5(1), 10-12. Beukelman, D., & Mirenda, P. (1998). Augmentative and alternative communication: Management of severe communication disorders in children and adults (2nd ed.). Baltimore: Paul H. Brookes Publishing Co. Hemsley, B., & Balandin, S. (2003). Disability, dysphagia, and complex communication needs: Making room for communication in ethical decisions about dysphagia. Advances in Speech-Language Pathology, 5(2), 125-129. Iacono, T. (2004). The evidence base for augmentative and alternative communication. In S. Reilly, J. Douglas, & J. Oates (Eds.), Evidence-based practice in speech pathology (pp.288-313). London: Whurr Publishers. Light, J. (1997). "Communication is the essence of human life": Reflections on communicative competence. Augmentative and Alternative Communication, 13, 61-70. Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7(5), 694-702. van de Sandt-Koenderman, M., Wiegers, J., & Hardy, P. (2005). A computerised communication aid for people with aphasia. Disability and Rehabilitation, 27(9), 529-533. | ||||||||||||||||||||||||||||||||||
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