Self Directed Learning Package - University of Queensland

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90 • The Palliative Approach ToolkitAlfred continues to deteriorate despite his constipation resolvingand the increased attention he receives from careworkersduring meal times. He is now bed bound, eating only a fewmouthfuls of food when assisted by a careworker, and hasstarting coughing when he swallows. Thickened fluids also resultin coughing. Alfred is increasingly drowsy and needs significantprompting to accept a drink from a cup and straw.His daughter Sarah visits most days and tells you she thinksAlfred is just “not trying hard enough” to eat. She cajoles himand tries to spoon food into his mouth, even bringing food fromhome. Sarah contacts Alfred’s GP requesting a feeding tube sohe “doesn’t starve to death.”Key PointDeciding to withhold or withdraw artificial feedingor hydration needs to involve recognition of theemotional impact on family and staff, particularlycareworkers.You convene a palliative care case conference with Alfred, Sarah,Alfred’s GP and a careworker who regularly works with Alfred.Key PointProviding food for a loved one is often viewed asa way of expressing affection and concern. Whenfamily are unable to continue this function theybecome distressed and may feel they are neglectingthe resident.Family members may find it difficult to distinguishbetween “not eating” as part of the dying processand “not eating” as bringing about the dyingprocess.At the palliative care case conference, Sarah was very concernedthat Alfred would starve to death if he was unable to eat anddrink. Remember that Sarah’s mother (Alfred’s wife) wasfed through a gastrostomy tube after she had a stroke. Thiscontinued for three weeks and then she died of pneumonia.
91 • Self Directed Learning Package - Advanced Registered & Enrolled NurseThinking PointThink about how you would respond to Sarah’sinsistence that Alfred should go to hospital to have afeeding tube inserted.Hint: the Tube Feeding Decision Aid below may help.Tube Feeding Decision Aid 11Information to be provided to the resident andfamily should include:Common causes of eating and swallowing problemsin older persons:Technical considerations regarding placement anduse of PEG tubesPrinciples of substitute / proxy decision making (ifnot already discussed)The risks and benefits of tube feedingThe option of supportive / comfort care (e.g. handfeeding; responsive to resident’s requests regardingthe need for, or the refusal of, food and fluids); andSome considerations regarding futurediscontinuation of PEG tube (e.g. when and howoften will the need for the PEG tube be reviewed;who can request a review / discontinuation and isthere a process for this.)Steps to decision making should include:Guiding the resident and their family through whatthey have learned about PEG tubes:How to apply this knowledge to the resident’spreferences, personal values, and clinical situation:What is the resident’s situation?What would the resident want?How is the decision affecting the family?What questions need answering before the resident/ or their family can make a fully informed decision?Who should decide about PEG placement?When should the PEG be disbanded; andWhat is the resident’s / or his / her family’s overallthoughts about the decision?Alfred is unconscious and you would not be surprised if he diesin the next two to three days.This time it is a careworker who approaches you, upset thatAlfred cannot drink. He says that he feels terrible if he forgets todrink any fluids during a busy eight hour shift so “how bad mustit be for Alfred being so dehydrated?”Thinking PointHow would you respond to the careworker?We suggest you use the “Understanding the DyingProcess” brochure (found in the PA Toolkit) tofacilitate discussions with careworkers just as youwould with family members.Alfred is still alive the next day and his GP suggests thatsubcutaneous (s/c) fluids (hypodermoclysis) may be needed.ActivityList the possible benefits and burdens that need tobe taken into account when considering whether toadminister s/c fluids?
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