Waking Dementia Patients in Final Stage: A Caregiver’s Dilemma

Table of Contents

Introduction

Dementia is a challenging disease that affects thinking, memory, and daily activities. In the final stage, where the patient can no longer support their head, caregivers face a crucial decision: whether to wake the terminally ill dementia patient for feeding or let them sleep, periodically checking for alertness. This article explores the ethical dilemma surrounding this decision, providing insights into the pros and cons of both choices.

Pros and Cons of Waking Up a Patient to Feed Them

One of the most difficult ethical decisions that caregivers of dementia patients face is whether to wake up a terminally ill patient who is in the last stage of dementia or not. Both options have pros and cons; each case is unique and complex. Here are some of the possible pros and cons of waking up a patient to feed them:

Pros of Waking Up a Patient to Feed Them

Providing nutrition and hydration that may prolong life and prevent complications: Feeding patients may help them get the nutrients and fluids they need to stay alive and avoid problems such as dehydration, malnutrition, or infections. Some caregivers may believe feeding a patient is their duty and a way of showing love and care.
Maintaining a sense of routine and normalcy for the patient and the caregiver: Feeding a patient may help them keep a regular schedule and a sense of familiarity and stability. It may also help the caregiver cope with the changes and losses that dementia brings by preserving some of the roles and routines they used to have.
Offering social interaction and emotional connection: Feeding patients may be a chance to communicate and bond with them, even if they cannot talk or respond. It may also be a way of expressing affection, comfort, and support to the patient and making them feel valued and respected.

Cons of Waking Up a Patient to Feed Them

Causing discomfort, pain, or distress to the patient who may not want to eat or drink: Feeding a patient may be unpleasant or harmful for them, especially if they are not hungry or thirsty or if they have difficulty swallowing or digesting food or liquids. It may also go against the patient’s wishes and preferences if they have expressed them before or show signs of resistance or refusal.
Increasing the risk of aspiration, choking, or infection due to swallowing difficulties: Feeding a patient may be dangerous, especially if they have problems with their mouth, throat, or lungs that make it hard to swallow or breathe. They may accidentally inhale food or liquid into their lungs, which can cause choking, pneumonia, or death.
Interfering with the patient’s natural dying process and quality of life: Feeding a patient may be unnecessary or futile for them, especially if they are close to death and their body is shutting down. It may also prolong their suffering and prevent them from dying peacefully and comfortably.

Pros and Cons of Letting a Patient Sleep and Checking for Feeding Readiness

Another option that caregivers of dementia patients have is to let the patient sleep as long as they want and check periodically if they are awake and alert enough to feed them. This may be more appropriate for patients who are at the final stage of dementia before death, where they can no longer hold their head up and need to be fed by someone else. There are pros and cons to this option as well, and each case is different and complex. Here are some of the possible benefits and drawbacks of letting a patient sleep and checking for feeding readiness:

Pros of Letting a Patient Sleep and Checking for Feeding Readiness

Respecting the patient’s wishes and preferences: Letting a patient sleep and checking for feeding readiness may be a way of honoring the patient’s dignity and autonomy. It may also be consistent with the patient’s advance directives, living will, or other documents that state their end-of-life care preferences.
Allowing the patient to die peacefully and comfortably: Letting a patient sleep and checking for feeding readiness may be a way of accepting the patient’s natural dying process and allowing them to pass away with minimal suffering and intervention. It may also align with the patient’s spiritual or religious beliefs about death and the afterlife.
Reducing the burden and stress on the caregiver: Letting a patient sleep and checking for feeding readiness may ease the caregiver’s workload and emotional strain. It may also help the caregiver cope with grief and loss by giving them time and space to say goodbye and prepare for the patient’s death.

Cons of Letting a Patient Sleep and Checking for Feeding Readiness

Missing the chance to provide nutrition and hydration that may improve the patient’s condition or comfort: Letting a patient sleep and checking for feeding readiness may mean that the patient does not get enough food or water to sustain their life or ease their symptoms. Some caregivers may feel they are neglecting or abandoning the patient by not feeding them.
Feeling guilty or conflicted about withholding food or drink: Letting a patient sleep and checking for feeding readiness may cause the caregiver to experience guilt, remorse, or doubt about their decision. They may wonder if they are doing the right thing or if they are hastening the patient’s death.
Facing ethical or legal challenges from family members or health care providers: Letting a patient sleep and checking for feeding readiness may lead to disagreements or disputes with other people involved in the patient’s care. They may have different opinions or expectations about feeding the patient or question the caregiver’s motives or authority.

How do you tell if the patient is Okay to feed?

Feeding a dementia patient can be challenging, especially in the later stages of the disease. Here are some general tips to help you determine if a dementia patient is ready to eat or drink:

Observe the patient’s body language, facial expressions, and vocalizations for signs of hunger, thirst, pain, or discomfort
Offer food and drink at regular times but also when the patient is most alert and attentive.
Provide visual, verbal, sensory, and physical cues to remind the patient that it is mealtime and to encourage eating and drinking.
Consult a speech and language therapist to check the patient’s mouth for chewing and swallowing difficulties if necessary.
Respect the patient’s preferences and choices, and do not force or coerce them to eat or drink if they refuse

Examples of the Ethical Dilemma About When to Feed

One story is about a woman named Mary, who was diagnosed with Alzheimer’s disease and lived in a nursing home. She had difficulty swallowing and often refused to eat or drink. Her daughter, Susan, visited her daily and tried to feed her, but Mary would often spit out the food or turn her head away. Susan was worried that her mother was starving and suffering and asked the staff to wake her up every two hours to feed her. The staff agreed but noticed Mary becoming more agitated and restless when they tried to feed her. They also observed that Mary seemed more peaceful and comfortable sleeping. They suggested to Susan that it was better to let Mary sleep and only offer food and drink when she was awake and alert. Susan was conflicted and felt guilty about either choice. She wondered what her mother would want and what was best for her quality of life.
Another story is about a man named John, who had vascular dementia and was in hospice care at home. He had lost most of his abilities and was bedridden. His wife, Alice, was his primary caregiver and loved him dearly. She wanted to do everything she could to keep him alive and comfortable. She followed the hospice nurse‘s instructions to feed him soft foods and thickened liquids and to use a syringe to give him water. She also used a moist sponge to wet his lips and mouth. She noticed that John often slept for long hours and sometimes did not open his eyes or respond to her voice. She wondered if he was in pain or aware of her presence. She also asked if she should wake him up to feed him or let him sleep. She was afraid that he would die if she did not feed him, but she was also afraid that he would choke or aspirate if she did. She asked the hospice nurse for advice, and the nurse told her that there was no right or wrong answer and that she should follow her intuition and John’s cues.
The third story is about a woman named Helen, who had Lewy body dementia and was in a palliative care unit. She had severe cognitive and motor impairments and was unable to communicate verbally. She had a feeding tube inserted in her stomach, which delivered a liquid formula to meet her nutritional needs. Her son, David, visited her daily and talked to her, read, and played her favorite music. He noticed that Helen often slept during his visits and sometimes had twitching movements or grimaces on her face. He wondered if she was dreaming or hallucinating. He also wondered if she was still enjoying life or suffering. He asked the palliative care team if they could stop the feeding tube and let her die naturally. The team explained to him that the feeding tube was considered a life-sustaining treatment and that they needed Helen’s consent or a valid advance directive to withdraw it. They also explained that stopping the feeding tube would not necessarily hasten her death and that it might cause her more discomfort and complications. They advised David to respect Helen’s wishes and dignity and to focus on providing her with comfort and emotional support.

Conclusion

Navigating the dilemma of whether to wake a terminally ill dementia patient for feeding is complex and deeply personal. Families and caregivers must weigh the pros and cons, respecting the patient’s wishes and considering the potential impact on their quality of life. Every decision should be made empathetically and focused on providing comfort during the end-of-life journey.