Casebook on Ethical Decision-Making in End-of-Life Care
of Older Adults

Decisions about feeding tubes in advanced dementia

-by Dr. Jacqueline Yuen, Clinical Lecturer, Department of Medicine and Therapeutics, CUHK

Introduction

In Hong Kong, tube feeding in advanced dementia patients is highly prevalent, particularly amongst those living in residential care homes for the elderly (RCHEs).1,2 However, feeding tubes are most frequently placed during an acute hospitalization where decisions are made with healthcare providers who are unfamiliar with the patients.3 Clinicians commonly rely on the swallowing assessment that a patient is high aspiration risk to justify feeding tube placement. This can be problematic if the decision neglects to consider other factors that are important to the best interests of the patient. Compounding the problem is the fact that many clinicians have inaccurate expectation of benefits from tube feeding that is not supported by evidence.4-7 Given that tube feeding carries significant risks and can negatively impact a patient’s quality of life,8 healthcare providers have an important responsibility to guide families to make informed decisions that support their loved one’s values and best interests. This article provides a step-by-step approach to inform clinicians on the decision-making process about feeding tube placement in advanced dementia patients.

Step 1: Investigate the etiology of the feeding problem

Eating difficulties in dementia patients can be due to many causes. The first step is to thoroughly evaluate whether the underlying cause is reversible. For example, poor appetite can be due to depression, dental problems, untreated pain, dry mouth, constipation, and medication side effects. All of these can be reversed with proper treatment.9 For problems that are manifestations of dementia such as apraxia resulting in inability to use utensils or refusal to open the mouth, conservative strategies such as providing finger food, cueing, altering the environment, and stimulation with different food temperatures, textures, and flavors can be tried.8 In Hong Kong, specialized dementia feeding programs in some public hospitals have been successful in overcoming eating difficulties in some dementia patients through conservative feeding strategies.

Step 2: Determine the patient’s overall prognosis

Healthcare providers and family often don’t recognize that dementia is a terminal illness. Average life expectancy after initial diagnosis is 4 to 9 years.10,11 Difficulty swallowing leading to recurrent aspiration pneumonia is common in patients in the advanced stage and may be a sign that the patient is near the end of life.12 Recognizing the patient’s stage in the disease trajectory is important to determine the prognosis and the likelihood of benefit from tube feeding. Prognostication tools such as the Functional Assessment Staging Tool (FAST) can help clinicians make this determination.13 Consultation with a geriatrics specialist may be helpful in some cases.

Step 3: Weigh risks and benefits of tube feeding and alternatives based on evidence

If a reversible cause cannot be identified and conservative strategies have been exhausted, clinicians should then determine how the evidence for tube feeding applies to the patient at hand. Contrary to a common misconception amongst healthcare providers that tube feeding can improve survival, this has not been shown in studies for patients with advanced dementia.14-18 This is consistent with the findings of a local study of elderly RCHE residents with advanced dementia where 1-year mortality was high at 34% and enteral feeding was a risk factor for mortality.2

In advanced dementia patients, tube feeding has not been shown to prevent aspiration pneumonia. Aspiration of oral secretions and regurgitated stomach contents can still occur.19,20 Tube feeding may even increase aspiration events since it decreases the lower esophageal sphincter pressure, making gastroesophageal reflux more common.21 Furthermore, tube feeding has not been shown to improve functional and nutritional status in advanced dementia patients.8,14,22 Tube feeding carries other significant risks include bleeding, mucosal erosion, vomiting, diarrhea, and tube blockage and dislodgement requiring repeated re-insertions.8 In Hong Kong, nasogastric tubes are more commonly used than percutaneous endoscopic gastrostomy tubes but are more uncomfortable.3 Physical restraints may be used to prevent patients from pulling out the tube. This not only worsens agitation in a demented patient, but also limits mobility leading to increased rates of pressure sores.15,23

An alternative strategy for feeding problems in advanced dementia is careful hand feeding (CHF).24 In CHF, a trained carer feeds the patient orally using feeding techniques and closely observes the patient for choking and pocketing of food. Although CHF cannot prevent aspiration events, it is no worse than tube feeding for the outcomes of aspiration pneumonia, functional status and death.22,25 CHF may be preferable when considering the patient’s quality of life. Unlike tube feeding, CHF allows patients to enjoy the pleasure of eating and socialization during meal times. Given these risks and benefits, the American Geriatrics Society recommends offering CHF over feeding tubes for eating difficulties in older adults with advanced dementia.26

Step 4: Individualize decision through a shared decision-making process with family

Clinicians should involve the family in shared decision-making when considering the option of tube feeding and its alternatives. The decision should prioritize any preferences of the patient if known, such as documented in an advance directive. If the patient’s preferences are not known, then the decision should be based on the patient’s best interests. Besides having a firm grasp of the clinical facts and evidence, clinicians should consider other factors including psychological, cultural, economic and institutional factors that may come into play.27

Families often experience distress when seeing a loved one without adequate nutrition, as providing nourishment is commonly seen as a way to nurture and comfort one who is ill.28 It may take time for families to accept the fact that their loved one is near the end of life and that placing a feeding tube is not going to “fix” the problem. Furthermore, families may hold certain cultural or religious beliefs that influence their perspectives. Clinicians should take on a respectful attitude when listening to their concerns, provide support, and try to find common ground when disagreements arise. A common concern raised by families in the local culture is the fear that their loved one will “starve to death.”27 Clinicians should respond empathically by acknowledging the families’ distress in seeing their loved one’s deterioration and reassure them that their loved one is not experiencing hunger at this advanced stage of illness. The patient is dying because the disease process is causing the body to shut down and not because inadequate nutrition is provided. It should be emphasized that CHF can promote comfort for their loved ones when they are near the end of life.3

It is also important to understand other team members’ and carers’ concerns in the decision process. Practical issues such as the availability of trained staff or caregivers to dedicate time for CHF in the hospital and when patients return their place of residence are important to consider. As are potential concerns from healthcare staff about legal liability if a patient subsequently aspirates after being hand fed. Institutions need to have strong policy support for CHF for end of life patients in order for this practice to be successfully implemented.27

Step 5: Comply with institutional policies on artificial nutrition and hydration (ANH) in terminally ill patients

When the healthcare team and family jointly decide that tube feeding is not in the best interest of a patient, clinicians should follow their institutional policies on withholding tube feeding. In Hong Kong public hospitals, clinicians should refer to the Hospital Authority’s Guidelines on Life-Sustaining Treatment in the Terminally Ill.3 For patients whose death is imminent (death is expected within a few hours or days), it is acceptable to withdraw or withhold ANH without a valid advanced directive. For patients whose death is not imminent, the decision requires consensus with the family and within the healthcare team. The team must include two doctors, one of whom is a specialist in a relevant field (e.g. geriatrics or palliative care). In the case where the patient is unable to swallow and thus CHF cannot be offered as an alternative, the team must also seek advice from the cluster clinical ethics committee. Two exceptions to this requirement are 1) patients who have previously expressed a clear wish to refuse tube feeding verbally to family members or in an advanced directive and 2) patients who are actively and persistently resisting tube feeding, such as repeatedly pulling out their nasogastric tube (HA Guidelines 2015).3

Conclusion

The decision about tube feeding for advanced dementia patients should be made in accordance to the ethical principles of patient autonomy and benevolence. Still, it should be a shared decision that ensures accurate communication about the patient’s prognosis, risks and benefits of tube feeding versus alternatives, and respects the family’s and healthcare team’s perspectives. Ideally, patients diagnosed in the early stages of dementia would have a chance to express their preferences about tube feeding and other preferences for future medical care while mentally sound. The advance care planning process can continue with the family after the patient loses capacity whenever signs of disease progression appear. In this manner, families will have more time to come to terms with the expected trajectory of their loved ones’ illness and avoid the need to make decisions during a “crisis” when the patient is hospitalized. Through earlier conversations, families may also make better decisions that honor their loved ones’ wishes and provide them with dignified care at the end of life.

References

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