JCPSLP Vol 17 Supplement 1 2015_lores

Ethics and dysphagia management

To tube or not to tube: Who can ethically answer that question? Helen Smith and Noel Muller

I n this edition of Ethical Conversations, we consider ethical issues related to informed consent and the placement of feeding tubes. Informed consent is the right of individuals to make decisions about their treatment based on all relevant information of the risks and benefits of that treatment (Mitchell, Kerridge, & Lovatt, 1996). It is predicated on the principle of client autonomy. Autonomy is about respecting the rights of people to self-determination in relation to decisions which affect them (Speech Pathology Australia, 2000). Autonomy is the principle that underpins issues such as consent, refusal of treatment, and confidentiality (Smith, 2007). In certain circumstances a person’s right to give consent may be removed. This can occur as a result of impaired capacity to make decisions or in the case of severe mental health issues when a person’s choice could result in harm to themselves or others (Trobec, Herbst, & Žvanut, 2009). In these circumstances another person or statutory body may become the designated substitute decision-maker. Three cases are provided to illustrate a number of issues speech pathologists may want to consider when contemplating substituted informed consent for the placement of feeding tubes (either short-term such as nasogastric tubes [NGTs] or long-term such as percutaneous endoscopic gastrostomy tubes [PEG tubes]). Case scenarios Case 1 John is in his early 30s and has a long history of schizophrenia. John’s schizophrenia is being managed by medication and is currently stable. He is single and lives with his very caring father. On this most recent admission to hospital, John presents with swallowing problems as a result of treatment for cerebral lymphoma. He is unable to communicate coherently nor is he able to eat, drink, or swallow his medications safely. He pulls out all NGTs and intravenous therapy. The medical team propose surgically placing a PEG feeding tube into John’s stomach to provide nutrition, hydration, and medications while he continues his treatment for lymphoma. There is a good prognosis for his lymphoma treatment. Case 2 Anna is in her late 60s and has suffered a stroke. On the day after her stroke she has severe language impairment (dysphasia) and is unable to speak or answer simple yes/no questions. She has profound dysphagia and her poor swallowing prevents her from taking any food, fluid, or medication by mouth. Anna has no family but has a legally prepared Advanced Care Directive 1 that states she does not want artificial (tube) feeding. Medical management favours placement of a temporary NGT so Anna can be given urgent cardiac medication which can only be given via a tube or by mouth. If she does not receive this medication she is at risk of a heart attack or further strokes.

Case 3 Max is an 88-year-old resident in a nursing home. He has advanced dementia. He presents to hospital with a severe pneumonia as a result of profound dysphagia which is due to his end-stage dementia. He has no advanced care directives and no family. His financial affairs are managed by the public guardian. Medical management favours placement of a PEG so that Max can be discharged back to his nursing home as soon as possible. Discussion Who can give informed consent? Each of these cases raises different issues for the team with regard to who can provide informed consent. When considering substituted consent, speech pathologists need to be aware of not only ethical considerations that arise in individual cases but also relevant laws and legislation. These may include: • Emergency decisions If there was an urgent (life and death) emergency need for medications for John, Anna or Max, then two doctors could consent to the placement of a NGT (or PEG, including administration of anaesthetic). Placement of a NGT for delivery of medication could most easily be argued by medical teams in Anna’s situation. • Mental health act An important consideration for John is whether he is covered by a mental health act. 2 Each Australian state and territory has a different mental health act. In some states, treatment decisions may be made for John by the State Director of Mental Health Services (a psychiatrist). Establishing whether John is covered under a mental health act is simply done by contacting his treating mental health team. If he was covered by a mental health Act his affairs may have been handed over to an adult guardian. The adult guardian would then be the substitute decision-maker for John’s general health and well being. If John was not covered by a mental health act then his father would be considered his next of kin and would be the substitute decision-maker. • Consent to treatment and palliative care acts Unfortunately, in Anna and Max’s cases there are no clearly designated decision-makers to assist in determining appropriate treatment options. The challenge in Anna’s case is the advanced care directive simply stating she does not want tube for feeding. Is this the same as refusing a tube for medication? Would Anna perceive a tube for medication as an extraordinary measure and refuse it if able? • It is reasonable and ethical to respect Anna’s right to have control over the end of her life. From state to state, however, there are different views about advanced care directives and their legality and validity. 3 In Anna’s case, if we are to consider the principle of autonomy, it would suggest her clearly expressed wish should be respected and form part of the treating team’s deliberations. The absence of

Helen Smith (top) and Noel Muller

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

www.speechpathologyaustralia.org.au