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An Ethical Discussion on Voluntarily Stopping Eating and Drinking by Proxy Decision Maker or by Advance Directive

Journal of Hospice & Palliative Nursing: June 2019 - Volume 21 - Issue 3 - p E15–E16
doi: 10.1097/NJH.0000000000000564


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PURPOSE: To present a summary of a case in which a hospice organization engaged in ethical deliberations about an activated proxy decision maker advocating for caregivers to stop hand feeding an incapacitated patient who had end-stage dementia.

LEARNING OBJECTIVES/OUTCOMES: After completing this continuing education activity, you should be able to:

1. Recall the background information and the author's conclusions about voluntarily stopping eating and drinking by proxy decision maker or by advance directives.

2. Summarize relevant literature about voluntarily stopping eating and drinking by proxy decision maker or by advance directives.

3. Outline the documents various organizations have provided to offer guidance about this issue.

  1. As noted in the article, of the 3.5 million Americans living with Alzheimer's disease, 1.5 million
    1. can manage most activities of daily living.
    2. have not had a definitive diagnosis.
    3. are in the late stages of the disease.
  2. Of those individuals who have dementia, about one-third of them have
    1. completed advance directives.
    2. not established a health care proxy.
    3. stated that they do not want any life-prolonging therapies.
  3. An individual patient's right to engage in voluntarily stopping eating and drinking (VSED) has long been recognized as
    1. a questionable choice that caregivers have a tendency to overrule.
    2. an autonomous choice for patients with terminal illness.
    3. analogous to suicide for terminally ill patients.
  4. When a patient does not have end-of-life wishes documented, proxies are typically appointed by
    1. the patient's caretaking staff.
    2. the primary care physician.
    3. next-of-kin statutes.
  5. Research cited in the article has found that it is stressful for a surrogate not only to make decisions that seem morally sound for the situation, but also to
    1. satisfy legal requirements.
    2. honor the patient's wishes.
    3. initiate the course of action.
  6. According to research cited, what can lead proxies to make decisions that may be different from even the documented wishes of a now incapacitated patient?
    1. pressure from the medical community
    2. intense fear and/or grief
    3. previously unavailable medical information
  7. End of Life Choices New York's (EOLCNY's) document “Advance Directive for Receiving Oral Foods and Fluids in the Event of Dementia” offers patients the opportunity to choose between 2 options: stating the desire for no hand feeding whatsoever and
    1. stating several provisions where hand feeding would be acceptable.
    2. choosing specific foods that would be acceptable for hand feeding.
    3. allowing hand feeding only if family members perform it for them.
  8. The EOLCNY document includes patients' wishes for hygiene, comfort, and
    1. how often they receive care.
    2. who should perform their care.
    3. where their care should be performed.
  9. In addition to offering guidance on completing of the directives, the EOLCNY document encourages users to
    1. give multiple copies of the document to anyone who might be involved in its execution.
    2. make sure family members understand and agree with all provisions.
    3. consult with an attorney before finalizing the directives.
  10. As a way of potentially facilitating a legal defense of the directive if necessary, EOLCNY specifically advocates the use of
    1. medical records.
    2. video statements.
    3. transcripts of conversations.
  11. End of Life Washington's document “My Instructions for Oral Feeding and Drinking” includes a directive for future caregivers to provide “comfort feeding” by hand until any of several conditions occur, one of which is that the patient
    1. spits out food.
    2. refuses to drink fluids.
    3. will only eat specific foods.
  12. In a high-profile case in Canada described in the article, the court ruled against following the directive because the patient
    1. was not yet in the advanced stages of dementia.
    2. had not specified oral nourishment.
    3. had not understood that withholding nourishment would end her life.
  13. The author stated that one of the most challenging ethical questions created by cases like the Canadian one is whether the provision of oral hand feeding
    1. is considered life-prolonging.
    2. is done to appease a family.
    3. is a health care procedure or basic care.
  14. According to Ann Heath, requests to follow any of the new advance directives for dementia are actually requests for
    1. maleficence.
    2. euthanasia.
    3. litigation.
  15. Heath contends that VSED by directive or proxy lacks a crucial consideration that exists when a competent person uses VSED: the ability to
    1. reverse the decision.
    2. evaluate the outcomes.
    3. weigh the consequences.
  16. Cantor supports honoring the rejection of hand feeding and hydration with Cochrane's argument that patients have the right to
    1. take professional caregivers out of the decision-making process.
    2. forbid any and all unwanted touching of their person.
    3. choose to endure the effects of malnutrition.
  17. Provision 1 of the American Nurses Association's Code of Ethics for Nurses offers a framework for nurses to practice with respect for the
    1. judgment of each patient's primary physician.
    2. intuition of colleagues and caregivers.
    3. inherent dignity of every person.
  18. The American Nurses Association's Code of Ethics states that nurses should both support and advocate for patients' wishes as long as
    1. they are within the legal rights of patients.
    2. key family members are in agreement.
    3. there are no conflicts of interest.
  19. The author recommends that in addition to developing formal policies on the topic, employers should also consider facilitating
    1. caregivers using their best judgment in deciding whether to follow advance directives.
    2. formal nursing education about VSED and withholding oral nourishment.
    3. legal advisement for all cases of withholding oral food and fluids.
© 2019 by The Hospice and Palliative Nurses Association.