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What is Ethical Decision Making?Ethical decision making in palliative care challenges the speech pathologist to make the most appropriate recommendations, in terms of benefit to the client (Kinlaw, 2005). In addition, the clinician must be able to validate their recommendations as being the "right" choice (Kinlaw, 2005).Examples of ethical dilemmas that may face a speech pathologist working in the field of palliative care include:
Ethical GuidelinesBeneficence, non-maleficence, autonomy, and justice have been outlined as the four principles of medical ethics (Miteff, 2001). For speech pathologists working in the field of palliative care, we also recommend consulting the following ethical guidelines:
Speech Pathologists and EthicsResearch identifies that people with palliative needs want to be fully informed of their diagnosis, and prognosis (Kinlaw, 2005; Faulkner, 1998). In addition, speech pathologists have an ethical obligation to tell the truth and fully inform all clients regarding their observations, and intervention recommendations (Kinlaw, 2005; Tulsky, 2005; Lang & Quill, 2004; SPA, 2002; SPA, 2000; Bowman, 2000; Faulkner, 1998). Once the client has been fully informed and has been assessed as having the cognitive ability to make decisions, it is crucial that clinicians respect the client's autonomy and their right to choose their preferred intervention (Kinlaw, 2005; Lang & Quill, 2004; Abu-Saad, 2001; Miteff, 2001).A palliative client has the right to change his/her mind regarding their care over time and as the disease progresses (Lang & Quill, 2004; Wilkinson et al., 1999). Regular opportunities to discuss the client's preferences should be provided (Tulsky, 2005; Faulkner, 1998). Clear and specific language should be encouraged to avoid ambivalence (Lang & Quill, 2004). Another role of the speech pathologist in the palliative care setting is that of dysphagia management (Eckman & Roe, 2005; Pollens, 2004). If a decision needs to be made regarding the mode of feeding; oral vs. enteral feeding, the speech pathologist should hold a discussion regarding the client's attitude towards, and interest in, food and fluids (Eckman & Roe, 2005; Lang & Quill, 2004). For many palliative clients, their medical condition may reduce their appetite (Lang & Quill, 2004; Miteff, 2001). Nonetheless, oral intake may provide the client with pleasure and comfort, and therefore consideration should be made as to whether this is still offered, despite aspiration risks (Pollens, 2004; Miteff, 2001). When involved in decision making for various aspects of care, speech pathologists* consider the following:
Ethics and CultureA client's cultural background will influence their ethical decision making (Sweeney & Bruera, 2002; Bowman, 2000). For example, in North America truth telling is expected (Sweeney & Bruera, 2002). However, in some South American and European countries telling the truth is not as widespread (Bruera, Neumann, Mazzocato, Stiefel & Sala, 2000).Family and friends may wish for their loved one not to receive their diagnosis (Faulkner, 1998). If this occurs, the speech pathologist should discuss with the family the client's needs and right to be fully informed (Faulkner, 1998). In Australia, speech pathologists are ethically bound to be completely honest with all clients, including those with palliative needs (SPA, 2002; Miteff, 2001; SPA, 2000). Furthermore, Chan and Woodruff (1999) found that clients with limited English proficiency did not receive care equivalent to those who were fluent in English. This observation may reflect both language barriers and cultural differences (Chan & Woodruff, 1999). When working with clients who have limited English proficiency, interpreters with the appropriate training may need to be involved to ensure the client is fully informed and to educate the palliative team of cultural practices (Currow & Nightingale, 2003; Chan & Woodruff, 1999). Cultural background may also impact on clients' attitudes towards their care (Sweeney & Bruera, 2002; Bowman, 2000; Chan & Woodruff, 1999). Autonomy typically represents a Western culture, whereas non-Western cultures practice collectivism (Bowman, 2000). A client's choice may be influenced by such orientation, and clients may wish to seek and follow the advice of their culture/community (Bowman, 2000). The speech pathologist should encourage open discussion of the client's culture and endeavour to learn the client's beliefs concerning health and sickness (Bowman, 2000; Kinlaw, 2005). When working in palliative care it is vital that health care professionals are aware of their own ethical position on issues (Miteff, 2001). Furthermore, when the receptive ability of a client is diminished, one must be mindful not to confuse one's own ethical preferences with that of the client's (Miteff, 2001). Ethics and Research in the Field of Palliative CareAnother pertinent issue within the ethical spectrum is that of scientific research in the field of palliative care (Riley & Ross, 2005; Jubb, 2002).A speech pathologist's contribution to palliative care should be guided by a combination of ethics, clinical judgement, and where possible, an evidence base (Jubb, 2002; Miteff, 2001; SPA, 2002; SPA, 2000; Bowman, 2000). However, as Lipman (2000) attests, anecdote rather than evidence frequently guides palliative care practices. There are various arguments for the inclusion of palliative clients in research: As health care professionals, speech pathologists require a strong evidence base to support and justify their interventions (Riley & Ross, 2005; Eckman & Roe, 2005; Currow & Nightingale, 2003; Jubb, 2002; Back & Curtis, 2001; Lipman, 2000). However, currently, there is a dearth of such evidence in the field of palliative care (Jubb, 2002). Lipman (2000) cogently observes that this lack of specific clinical evidence impedes our confidence in the provision of optimal palliative care. Furthermore, there is a specific need for documentation in the literature detailing the role of the speech pathologist in palliative care (Pollens, 2004), and the met and unmet needs of the palliative population (Currow, Abernethy & Fazekas, 2004). Once such literature is published, speech pathologists must be vigilant when analysing it, and scrutinise it for methodological integrity and applicability to specific patients (Back & Curtis, 2001; Jubb, 2002). Arguments against the inclusion of palliative clients in research include:
Palliative clients, their family, their friends, and the palliative care team stand to benefit from research (PCA, 2003; Bowman, 2000). Literature may facilitate a standardisation of approaches to management amongst the palliative care team and reduce differences in judgment; consequently reducing fear and discomfort in clients and their families (Bowman, 2000). Ongoing research in the field of palliative care is indispensable (Riley & Ross, 2005; Jubb, 2002). ReferencesAbu-Saad, H. (2001). Bridging the evidence to clinical practice: A glimpse at future challenges in palliative care. In H. Abu-Saad (Ed.), Evidence-based palliative care across a lifespan. (pp. 122-137). 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. Bowman, K. (2000). Communication, negotiation, and mediation: Dealing with conflict in end-of-life decisions. Journal of Palliative Care, 16, S17-S24. Bruera, E., Neumann, C., Mazzocato, C., Stiefel, F., & Sala, R. (2000). Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients. Palliative Medicine, 14, 287-298. 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. Currow, D., Abernethy, A., & Fazekas, B. (2004). Specialist palliative care needs of whole populations: A feasibility study using a novel approach. Palliative Medicine, 18, 239-247. Currow, D., & Nightingale, E. (2003). "A planning guide": Developing a consensus document for palliative care service provision. Medical Journal of Australia, 179, S23-S25. 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. 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. Jubb, A. (2002). Palliative care research: Trading ethics for an evidence base. Journal of Medical Ethics, 28(6), 342-346. Kinlaw, K. (2005). Ethical issues in palliative care. Seminars in Oncology Nursing, 21(1), 63-68. Lang, F., & Quill, T. (2004). Making decisions with families at the end of life. American Family Physician, 70(4), 719-723. Lipman, A. (2000). Evidence-based palliative care. In A. Lipman, K. Jackson & L. Tyler (Eds.), Evidence based symptom control in palliative care: Systematic reviews and validated clinical practice guidelines for 15 common problems in patients with life limiting disease (pp. 1-9). New York: Pharmaceutical Products Press. Miteff, L. (2001). Palliative care ethics: Autonomy in aged care. Australian Nursing Journal, 9(6), CU1-CU4. Palliative Care Australia (PCA) (2003). Palliative care service provision in Australia: A planning guide. Retrieved June 10, 2005, from http://www.pallcare.org.au/Portals/9/docs/publications/Planning%20guide2003.pdf Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7(5), 694-702. Riley, J., & Ross, J. (2005). Research into care at the end of life. The Lancet, 365(9461), 735-737. Salt, N., & Robertson, S. (1998). A hidden client group? Communication impairment in hospice patients. International Journal of Language and Communication Disorders, 33, 96-101. Speech Pathology Australia (2000). Code of ethics. Melbourne: The Speech Pathology Association of Australia Limited. Speech Pathology Australia (2002). Ethics Education Package. Melbourne: The Speech Pathology Association of Australia Limited. 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. | ||||||||||||||||||||||||||||||||||
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