JCPSLP Vol 17 Supplement 1 2015_lores

education about appropriate consistencies Anna brought in appropriate home-made foods for her mother to eat. Anna had asked the speech pathologist about the PEG feeding tube. The speech pathologist had explained in detail what it was and provided an information booklet. The booklet contained a worksheet for patients/families considering a PEG feeding tube procedure that included the advantages and disadvantages of feeding tubes. The speech pathologist was not sure Anna fully understood the information in the booklet. She revisited the information with an interpreter present. Anna still had many questions and the speech pathologist wondered about Anna’s exposure to and understanding of health information matters. After a series of meetings and discussions, she thought that Anna demonstrated a basic understanding of the procedure and its complications. 3. Establishing who can give consent The social worker has established that Mrs Demarco’s daughter has legal guardianship but that Mrs Demarco has not made any advanced directives or statement of choices regarding medical treatment or insertion of a feeding tube. Mrs Demarco has two other children. The physiotherapist has established that Mrs Demarco is now bed-bound and cannot stand or transfer safely. Mrs Demarco’s three children need to understand Mrs Demarco’s capabilities and difficulties before making any informed decisions about their mother’s future care. 4. The importance of team work Anna’s English, while functional, appears limited for complex health-related information. Accordingly the social worker arranges for an interpreter to be present at the family meeting. Anna and her two brothers attend the family meeting. Mrs Demarco is not in attendance as she is unable to participate in the discussion and decision-making due to her decreased cognitive abilities. At the family meeting the general medical team provides the family with information regarding Mrs Demarco’s diagnoses and prognosis. The signs of end-stage dementia are stressed. The family agree they have seen a marked deterioration in Mrs Demarco over the past six months in general and this admission in particular. The speech pathologist explains the difficulties that Mrs Demarco has with eating and drinking and the associated problems with choking and aspirating. Anna asks again about the option of the PEG feeding tube as she does not want her mother to starve. The palliative care team explain how at the end of life people often stop feeling hunger and thirst. The team describe the role that comfort-feeding of foods that will not obstruct her airway, (that is, the choice of relatively low risk non-choke foods) and exemplary mouth care could play in maintaining Mrs Demarco’s quality of life and comfort. 5. The importance of time The palliative care team sensitively explains to Anna why her mother’s situation is different to that of her friend’s mother. Anna begins to gently weep. The general medical and palliative care teams offer to give Anna and her brothers more time to discuss all the information and agree to revisit the issue in a couple of days. Over the ensuing days Anna asks many questions of all members of the team about PEG feeding tubes and comfort-feeding and end-stage palliative care. The palliative care social worker talks with the family about what supports could be provided at home or in a hospice or nursing home.

At the next meeting Anna and the family decide to take Mrs Demarco home with supports (including visiting nurses and home help) and to use comfort oral intake. Three months later Mrs Demarco passes away at home in her sleep after many meals of her favourite home-made gelato. Ethical questions raised Box 1 lists a number of ethical questions raised in this case study. Refer to the Speech Pathology Australia Code of Ethics (Speech Pathology Australia, 2010) for more information. Box 1. Ethical questions to ask when considering placement of a feeding tube in a client with life- limiting disease • Does the multidisciplinary team agree on the client’s diagnosis and prognosis? • Does the client understand her/his diagnosis and prognosis? • Can the client make informed decisions about her/his medical care or is surrogate decision-making necessary? • Has clear and accurate information (couched in terms that suit the family’s level of health literacy) been provided to the family to enable them to make informed decisions (autonomy) and provide informed consent? • Has the family had the opportunity to express their opinion and participate in the decision-making process? • When considering active treatment has “non-maleficience” been considered (i.e., harm prevention and not intentionally causing harm)? • Have the client’s comfort and quality of life been considered (i.e., “beneficence” / benefiting others through our actions?) • Is it possible to enhance the client’s level of function or is active intervention “futile”? • What level of clinical expertise is required? If necessary, have senior speech pathologists been consulted? Implications for speech pathologists This case study attempts to illustrate the importance of accurate, meaningful dysphagia assessment, the complexity of truly informed consent, the importance of the consideration of futility of intervention or treatment and doing no harm, balanced with quality-of-life decisions and doing “good” in end of life dysphagia management. These ethical considerations, however, illustrate that there are no easy answers to complex situations. Some clients presenting to hospital with life-limiting disease and dysphagia may not be provided with all options. These clients may receive PEG feeding tubes, may be sedated so they do not pull them out, and may receive the recommendation of “nil orally” to manage the risk of aspiration and pneumonia. Families may not be provided with essential information about the end-of-life process or may not be in a position to hear this information (because they may find it difficult to accept that their loved one is in the process of dying). The speech pathologist has an important role in facilitating complex conversations and communication of detailed and sometimes distressing information to the patient and the family. While this type of situation is part of the daily life of many speech pathologists, students and clinicians inexperienced

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JCPSLP Volume 17, Supplement 1, 2015 – Ethical practice in speech pathology

Journal of Clinical Practice in Speech-Language Pathology