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, 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 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 , malnutrition, or . 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 , 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 , 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
  • 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 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 '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.

Resources

To Feed or Not to Feed? A Case Report and Ethical Analysis of Withholding Food and Drink in a Patient With Advanced Dementia

Strategies for feedng patients with Dementia

Dementia food and eating

Caregiver's Guide to Dysphagia in Dementia

Feeding Strategies for Behaviors Associated with Dementia

Feeding Choices for Patients with Advanced Dementia

Improving Decision-Making about Feeding Options in Dementia – Palliative Care & Hospice Program

Eating and drinking – End-of-life care and dementia

The Importance of Caregiver Journaling

Reporting Changes in Condition to Hospice

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The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease and Other Dementias

The Validation Breakthrough: Simple Techniques for Communicating with People with ‘Alzheimer's-Type Dementia'

Dementia Home Care: How to Prepare Before, During, and After

Atypical Dementias: Understanding Mid-Life Language, Visual, Behavioral, and Cognitive Changes

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Fading Reflection: Understanding the complexities of Dementia

Dementia Caregiving: A Self Help Book for Dementia Caregivers Offering Practical Coping Strategies and Support to Overcome Burnout, Increase Awareness, and Build Mental & Emotional Resilience

Navigating the Dementia Journey: A Compassionate Guide to Understanding, Supporting, and Living With Dementia

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

Four Common Mistakes by Caregivers of Loved Ones with Dementia and What Do Differently (video)

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

Surviving Caregiving with Dignity, Love, and Kindness

Caregivers.com | Simplifying the Search for In-Home Care

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My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It's Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I've Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

My Loved One with Dementia

Understanding Dementia (Alzheimer's & Vascular & Frontotemporal & Lewy Body Dementia) (Video)

How Do I Know Which Dementia I'm Looking At? (Video)

Dementia Training material (Free)

Promoting Meaningful Relationships with Dementia Patients through Validation Therapy

Unlocking the Power of Validation Therapy in Compassionate End-of-Life Care

Validation Therapy: A Valuable Tool for Families and Healthcare Teams

Best Practices for Approaching Combative Dementia Patients

Dementia Insights: The Validation Method for Dementia Care

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The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's Disease and Other Dementias

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How Do I Know You? Dementia at the End of Life

The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer's Disease and Other Neurocognitive Disorders (Guides to Caregiving)

Sundown Dementia, Vascular Dementia and Lewy Body Dementia Explained

The Caregiver's Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One (Caregiver's Guides)

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Dementia Care Companion: The Complete Handbook of Practical Care from Early to Late Stage

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death.”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side, A Guide for Caring for the Dying at Home

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