Writer Chiung Yao (瓊瑤) recently wrote on Facebook about caring for her sick husband. Her post drew attention to the issue of long-term care and the Patient Autonomy Act (病人自主權利法), which was passed in January last year and is scheduled to take effect in 2019. However, in the past few days she has disagreed with her stepchildren over nasogastric intubation for her husband.
Anyone with dementia or who has had a stroke or who is aging can find swallowing difficult. Eating less or poorly reduces nutrition, which leads to weakness and increases the need to rest. This can cause bedsores and infections, frequent hospital stays, depression and other complications.
Many elderly people face this situation as their health deteriorates. So how can we bring hope and improve the quality of life of elderly people?
This is not just something that caregivers and family members hope for, it also poses a challenge.
In recent years, the Taipei City Hospital adopted shared decisionmaking between doctors and patients, which has led to the introduction of “comfort feeding” for end-stage dementia patients, to overcome difficulties swallowing that often occur in that stage.
Healthcare workers discuss the pros and cons of different feeding methods with patients and their family members so they can make an informed decision.
Nasogastric intubation is convenient, quick and calorie-managed, but the insertion of a foreign object in the nose can cause discomfort. Because of this, patients sometimes pull the tubes out, which leads to them being restrained, which in turn can cause physical and mental stress.
Comfort feeding means that caregivers give patients small pieces of food to eat, relying on their hand-mouth reflex. If the patient wants to eat, they can. They are not forced to eat if they do not want to or if they choke.
This method relieves the patient of the discomfort caused by intubation and makes eating a comfortable activity. However, the drawback is that caregivers need to make more effort to prepare food and the patient might lose weight due to insufficient nutrition.
Studies show that intubation does not increase survival rates of people with severe dementia, nor does it reduce the risk of aspiration pneumonia.
Speech-language pathologists play a key role in medical decisionmaking groups. Their professional evaluation during the initial stages of dementia can help people learn ways to prevent difficulties in swallowing, for instance, by giving patients swallowing exercises as early as possible.
During the middle stages of dementia, speech-language pathologists can give patients swallowing training to ensure they are able to continue eating and drinking safely and to prevent aspiration pneumonia.
During the end stages of dementia, speech-language pathologists can create a comfortable and safe meal plan based on a patient’s wishes.
Clinical psychologists can conduct a psychological assessment to determine the severity of a patient’s condition and the status of their cognitive functions. Such assessments serve as a reference for the medical team and family members to help them make appropriate decisions and plans.
If physicians determine that someone is nearing death, consideration should be given to whether ongoing treatment could physically burden a patient. This puts a lot of pressure on family members who face difficult medical decisions, such as whether the patient should receive treatment, which could make them feel like “executioners.”
As a result, the government is promoting the Patient Autonomy Act and encouraging people to consider planning their own care in advance, while their minds are clear enough to decide if life support should be used during the last stages of their lives.
This means that patients are able to participate in the decisionmaking process before they are too ill and that their family members are not put in a difficult situation.
Rejecting life support does not necessarily lead to the immediate death of the patient, and even if it does, it is a natural consequence of progressive illness.
We all die eventually. Would you choose to delay death or extend life? What does “life” mean to you? When you are approaching death, do you want to bid farewell to the world in a dignified way without regrets? If so, make plans while you are still in good health.
Julia Chang is a clinical psychologist at Taipei City Hospital. Wang Shueh-pei is a speech-language pathologist.
Translated by Eddy Chang
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