Nutrition and Hydration
at the End of Life
Alice Fornari, Ed.D., RD
Afornari@aecom.yu.edu
Quote from James Cimino, MD
“Patients receiving palliative care may receive
nutrition repletion or comfort care. Non
abandonment is a fundamental principle of
nutrition support of advanced cancer
patients.”
Ethics Analysis Triangle

Virtues: integrity, respect, compassion
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Doing what fits the situation and taking
responsibility for actions
Seeing the situation from the perspective of the
other person
Rules
Goals
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Compromise: finding middle ground between you
and the other
Rules/Principles

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Autonomy: respect self-determination of each
person
Beneficence: do good for each person

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Nonmaleficence-do no harm to any person
Justice: treat each person with fairness
Goals of Patient Care
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Achieve Health
Maximize Human Flourishing
Provide Care
Minimize Human Suffering
Action Requires Justification
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Questions to ask to justify actions:
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Have we done what is right, good and fitting?
Have we honored autonomy?
Have we maintained respect for others?
Have we maximized flourishing and minimized
suffering?
Three Landmark Cases
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Are nutrition and hydration medical
procedures?
Karen Ann Quinlin (1975)
Nancy Cruzan (1980s-90)
Helga Wanglie (1990s)

Ethical and legal issues in nutrition, hydration and
feeding-Position of ADA. J Am Diet Assoc. 2002;
102:716-726.
Common Questions

Is artificial hydration and nutrition medical
therapy?
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If yes, then this decision is subject to the usual
standards for medical decision making
Are medically provided hydration and
nutrition simply “food and water?”

If yes, hydration and nutrition are basic and
ordinary measures which may never be refused,
withdrawn, or withheld.
MYTH-Reality

Withholding or withdrawing of artificial fluids
and nutrition from terminally ill or permanently
unconscious patients is illegal

Like any other medical treatment, fluids and
nutrition may be withheld or withdrawn if the
patient refuses them or, in the case of an
incapacitated patient, if the appropriate surrogate
decision-making standard is met

Meisel, A., Snyder L, Quill T. Seven legal barriers to end-oflife care. Myths, realities, and grains of truth. JAMA 2000;
284:2496.
American Dietetic Association Position
Statement on Nutrition, Hydration and
Feeding

The development of clinical and ethical criteria for
the nutrition and hydration of persons through the
life span should be established by members of the
health care team. Dietetic professionals should work
collaboratively to make nutrition, hydration and
feeding recommendations in individual cases.

Ethical and legal issues in nutrition, hydration and feedingPosition of ADA. J Am Diet Assoc. 2002; 102:716-726.
Summary Guidelines for
Feeding
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Feeding should start immediately when the
patient is medically stable
Feedings should maintain a reasonable
weight, maintain muscle mass, and achieve
hydration
Do not feed or stop feeding if medically
contraindicated
Stop the feeding if there is evidence of the
patient’s wish to stop nutrition and hydration
Where does the Decision Making
Begin
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Ask these questions:
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What does or would the patient want?
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What are the goals of therapy?
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What does the patient consider quality of life?
Will the treatment, i.e. nutrition and hydration, benefit
the patient? What are the risks?
Does evidence –based medicine support the
desires of the patient?
NY Health Care Proxy Law

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Takes into account the societal difference of
opinion on hydration and nutrition
In the case of withholding or withdrawal of
artificial hydration and nutrition, if the
patient’s wishes “ are not reasonably known
and cannot with reasonable diligence be
ascertained”, the law provides that “ the
agent shall NOT have the authority to make
decisions regarding these measures”.
NYS Law-cont.
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Advise patients (who may want their agent to
prevent or discontinue these measures) to
specifically authorize their agent to withhold
or withdraw artificial nutrition or hydration on
the proxy form.
If not documented specifically, the patient
should state on the proxy form that his or her
agent “knows” their wishes on this treatment.
Case Scenerio
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Mrs. Y, an 89-year-0ld woman, was an eight-year resident of a skilled nursing facility (SNF), living in the same
room since admission. During this time, she was diagnosed with a dementia that was now fairly advanced. She
was alert and able to recognize individual members of the nursing home staff. Her daughter was her closest
relative and was quite involved in her care. Mrs. Y spoke only Greek despite living in the United States for many
years. Apparently she had spent most of her time at home and had been dependent on her late husband for all
communication and interaction with the non-Greek community. After suffering pneumonia a few weeks previously,
her appetite diminished. She experienced a significant decline in her body weight and developed a decubitus
ulcer that was somewhat painful. Her daughter reluctantly agreed to the placement of a nasogastric tube, voicing
concerns over her mother’s possible discomfort with the tube. Mrs. Y regained much of the lost weight. However,
the tube repeatedly became dislodged and was finally removed altogether.
Mrs. Y again began to lose weight. The care team recommended placement of a percutaneous endoscopic
gastrostomy (PEG) tube. However, the nursing facility would require that Mrs. Y be transferred to a different unit
for residents with greater care needs. Mrs. Y’s daughter said she rather have her mother die than be moved from
her “home”. However, she agreed to the gastrostomy on the condition for no change in residence. Mrs. Y never
executed a formal advance directive and the daughter admitted to no direct knowledge of her mother’s
preferences regarding artificial nutrition. She recalled her mother stating that she “never wanted to become a
burden” to her children. She also recalled that the patient’s cousin had throat cancer and lived for many years at
home with a feeding tube. Mrs. Y had remarked that she was thankful that the tube allowed him to have a decent
life despite the cancer.
The SNF complied with the daughter’s request. The PEG was placed. During the next 6 months, Mrs. Y suffered
from cellulites at the PEG site, and was sent to the hospital for endoscopic replacement of the tube after it
fractured. She gradually became nonverbal and did not recognize her family but was alert and apparently
comfortable. The tube became clogged and nonfunctional. The SNF contacted the daughter to have the tube
replaced, but the daughter refused stating that her mother “had no life” and that she should be left in peace. Her
caregivers told the daughter that you “can’t starve her to death”.
A bioethics consultation was called.
Decision Making to Initiate or Continue Artificial Nutrition
and/or Hydration
Emanuel, LL, von Gunten CJ, Ferris FD, Education for physicians on end of life
care/Institute for Ethics at the AMA. Chicago, Il: EPEC Project, The Robert Wood
Johnson Foundation, 1999.
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Unspoken premise: food and water are
symbols of caring
Is the primary goal palliative care?
Is the outcome of the disease inevitable and
the intervention will not change this outcome?
Does intervention prolong the dying process
and/or cause suffering?
Is cognitive impairment irreversible?
Decision Making to Initiate or Continue Artificial
Nutrition and/or Hydration-cont.
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Does the intervention cause complications?
Does the patient have end-stage organ
failure and/or end-stage disease?
Is the patient profoundly impaired by a stroke
and will not be able to swallow?
Does the risk exceed the benefit?
Is the quality of life verbalized as poor by the
patient?
AAFP End of Life Care
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Total of 11 principles to guide care provided at end
of life. (http://aafp.org)
Beliefs:
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Focus on quality, compassionate patient care
Stay current and competent in knowledge and skills in
palliative medicine and medical management
Support the medical, psychological and spirtial needs of
the patient and family
Dialogue with patients, family and society to explore what
is reasonable and morally appropriate
Physician and Team Member
Responsibilities
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Know state laws on living wills and durable powers of attorney
Have knowledge on risk-benefit ratio with medical treatments
Discuss life-sustaining measures with patients before a medial
emergency occurs
Document in medical record discussions and patient wishes
Maintain any legal documents in the patient’s medical record and
as appropriate review with patient
Review the information with patient and family as circumstances
warrant
 These support the AMA’s “Current Opinions of the Council on
Ethical and Judicial Affairs.” (http://www.amaassn.org/ama/pub/category/2498.html )
Concerns of Physicians/Health
Care Providers
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Are physicians legally required to provide all lifesustaining measures possible?

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No. Patients have the right to refuse any medical
treatment, even artificial hydration and nutrition
Is withdrawal or withholding of treatment equivalent
to euthanasia?
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No. There is a strong general consensus that withdrawal or
with holding treatment is a decision that allows the disease
to progress on its natural course. It is not a decision to
seek death and end of life.
 Ackerman, RJ Withholding and Withdrawing Life-Sustaining
Treatment, Am Fam Phys, October 1, 2000.
EBM Summary on Artificial
Nutritional Support
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In a terminally ill patient, it is an emotional response to
the clinical situation
Not proven to be clinically beneficial
Terminally ill patients with cancer have uniformly shown
that treatment with parenteral nutrition provides no
survival benefit and does not improve response to
chemotherapy
Quality studies have consistently demonstrated no
benefit from the use of nutritional support in patients at
or near the end of life

Brooke GB Artificial Nutritional Support at End of Life: Is it
Justifiable? Am Fam Phy July 1 2001.
Using EBM

Using evidence to guide treatment is wise but
physicians must avoid the “slippery slope” of
providing no intervention for vulnerable
patients.

Brooke GB Artificial Nutritional Support at End of
Life: Is it Justifiable? Am Fam Phy July 1 2001.
Terminal Nutrition-Summary
Winter SM. Terminal Nutrition: framing the debate for the
withdrawal of nutrition support in terminally ill patients. Am J Med
December 15, 2000; 109:723-6
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Decisions about nutritional support at the end of life
are influenced by emotional associations and
personal experiences
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These experiences do not correspond well with end-of-life
experience
Viewing nutritional support as a treatment, not as a
unique therapy, allows a more objective appraisal of
its value in end-of life care
Use the same standards applied to other treatment
decisions
Summary-cont.
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There is no evidence that nutritional support
prolongs life or decreases morbidity in
patients with cancer, sepsis, or advanced
cardiac or respiratory disease
It is inferred that nutritional support will also
fail at modifying disease progression in dying
patients
Nutritional support also carries potential harm
from complications of access and feeding
Summary-cont.
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Withholding unrequested nutrition appears to
have effects that may enhance patient
comfort and well being, an appropriate goal
for end-of-life care
Appetite may be reduced or abolished based
on ketosis
Increased comfort secondary to reductions in
GI, respiratory and urinary output
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These benefits are consistent with physiologic
effects of starvation
Concluding Quote
“With the rise of interest in evidence-based
medicine, some have questioned whether this
new medical “movement” is fully compatible with
ethics and humanism in medical practice. At
least in the instance of artificial nutrition and
hydration at the end of life, EBM is more
compatible with good medical ethics-without the
solid evidence base, the ethical question cannot
be properly answered.”

Brody H. Evidence-based Medicine, nutritional support and terminal suffering. Am J Med
December 15, 2000; 109:740-741.