Be able to discuss and clarify “pleasure feeding” with patients and their families Identify ethical issues with continuing or stopping artificial nutrition and hydration Understand complications of artificial nutrition and hydration that are not ethically justifiable Be able to discuss issues of self-dehydration and self-starvation

1. 1
Ethical Issues Regarding
Nutrition in Advanced Illness
Michael Aref, MD, PhD, FACP, FHM
Assistant Medical Director of Palliative Medicine
Carle Hospital and Physician Group

2. 2
Disclosures
• None

3. 3
Objectives
• Understand complications of artificial nutrition and
hydration that are not ethically justifiable.
• Identify ethical issues with continuing or stopping
artificial nutrition and hydration.
• Be able to discuss and clarify “pleasure feeding” with
patients and their families.
• Be able to discuss issues of self-dehydration and self-
starvation.

4. 4
PATIENT VIGNETTE
CB

5. 5
CB

6. 6
bioethicsarchive.georgetown.edu/pcbe/images/living_well_graph.gif
The Fate of Conan
Disease Trajectories

7. 7
ARTIFICIAL NUTRITION & HYDRATION
PROS & CONS

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Nutrition Dependent Disease And Disease Independent of Nutrition
Malnutrition
• Malnutrition or malnourishment
is a condition that results from
eating a diet in which nutrients
are either not enough or are too
much such that the diet causes
health problems.
Cachexia
• Cachexia or wasting syndrome is
loss of weight, muscle atrophy,
fatigue, weakness, and significant
loss of appetite in someone who
is not actively trying to lose
weight.

9. 9
Benefits of Artificial Nutrition and Hydration
• Physiological support for temporary inability to swallow or
to use their gastrointestinal tract due to otherwise
reversible conditions.
• Artificial nutrition and hydration (ANH) may prolong life
and allow a more accurate assessment of the patient's
chance of recovery.
• For patients with chronic disabilities who are unable to take
in adequate nutrition by mouth and who enjoy the life they
lead, ANH is physiologically and qualitatively useful.
Nutr Clin Pract. 2006 ;21:118-125

10. 10
Supportive NOT Curative
• ANH alone, while sometimes supportive, does not
cure or reverse any terminal or irreversible disease
or injury.
• Multiple studies have consistently failed to show
meaningful clinical benefit from ANH in terminally
ill patients.
Nutr Clin Pract. 2006 ;21:118-125
Nutr Clin Pract.1994;9:91– 100

11. 11
System Shut Down
• Terminal illness is a biochemical and metabolic
process = slowing of bodily function.
– Loss of appetite and thirst.
– Difficulty swallowing.
– Simultaneous inability to utilize nutrients.
• Few symptoms from dehydration or lack of
nutrition.
ANH is “counterpalliative”
Palliat Support Care. 2006;4:135–43.
NEJM. 2004;350:2582–90.
Medsurg Nurs. 2000;9:233–44.

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Little Quantity-of-Life, Less Quality-of-Life
• ANH support by either the enteral or parenteral route
to terminally ill patients suggests increased suffering
without improved outcome.
• ANH, whether provided by “feeding tube” or vein, is
often associated with significant complications,
including bleeding, infection, physical restraints such as
tying the patient down, and in some cases a more
rapid death.
• TPN does not alleviate hunger.
JAMA.1999 ;282:1365– 1370
J Gerontol.1998 ;53:M207– M213
Lancet.1997 ;349:496– 498
Appetite. 1989;13(2):129-41

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Artificial Nutrition and Hydration
• Amyotrophic lateral sclerosis
– Improves quality of life in patients with the bulbar form of
amyotrophic lateral sclerosis.
• Cancer
– A review of 70 published, prospective, randomized trials of ANH
among cancer patients failed to demonstrate the clinical efficacy of
nutrition support for such patients.
• Dementia
– Tube feeding does not increase life expectancy and worsens quality
of life in end-stage dementia, i.e. when dysphagia develops due to
dementia.
End-of-Life Indications and Contraindications
Clin Nutr. 2006 Apr;25(2):330-60
Nutr Clin Pract. 2006 ;21:118-125

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ARTIFICIAL NUTRITION & HYDRATION
EMOTIONS & ETHICS

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Emotional Perspective
• Family members
– Unwillingness to accept terminal prognosis.
– Belief in cruelty of dying process if ANH not administered.
– Need to demand interventions to avoid guilt.
– Would not ask for themselves, but do ask for family members.
• Physicians
– Lack of familiarity with palliative care techniques and evidence.
– Length of time required to educate families on true facts of ANH.
– Reimbursement for insertion of PEG tube, etc.
– Desire to avoid controversial discussions.
– Fears of litigation.
• Administrators
– Reimbursement for tube feedings, etc.
– Fear of regulatory sanctions if ANH not administered (nursing homes).
– Extra time and staff needed to assist with oral feedings in weakened or demented patients.
– Fears of litigation.
• Withholding ≠ Withdrawal
Clin Nutr. 2016 Jun;35(3):545-56
J Gen Intern Med. 2011 Sep;26(9):1053-8
J Am Med Dir Assoc. 2007;8:224–28.

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Ethical Perspective
• Prerequisites of artificial nutrition and hydration
are:
1. an indication for a medical treatment, and
2. the definition of a therapeutic goal to be achieved, and
3. the will of the patient and his or her informed consent.
In all cases however the treating physician has to take the
final decision and responsibility.
• Withholding = Withdrawal
Clin Nutr. 2016 Jun;35(3):545-56
J Gen Intern Med. 2011 Sep;26(9):1053-8
J Am Med Dir Assoc. 2007;8:224–28.

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C for Critical or Comfort
Critical Care
• Mechanical Ventilation
• Vasopressors
• Artificial Nutrition and Hydration
– D5 or D10 is not nutritional
support
Comfort Care
• Supplemental oxygen for comfort
• Symptom management
• Pleasure feeding

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ARTIFICIAL NUTRITION & HYDRATION
TALKING WITH PATIENTS AND FAMILIES

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Talk Early. Talk Often.
• Anticipate trajectory of disease so that you can
have continuing conversations about goals-of-care
and advance directives.
• Making decisions empowers patients and
decreases burden on family because these
conversations have already occurred.

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REMAP Artificial Nutrition and Hydration
Step What you say or do
Reframe why the artificial nutrition
and hydration aren’t appropriate.
You may need to discuss dysphagia or why artificial nutrition and hydration will not be helpful “Given this news, it
seems like a good time to talk about what to do now.”
Expect emotion and empathize.
“It’s hard to deal with all this.” “I can see you are really concerned about [x].” “Tell me more about that—what are
you worried about?” “Is it OK for us to talk about what this means?” “It is human nature to worry about feeding our
loved ones.”
Map the future.
“Given this situation, what’s most important for you?” “When you think about the future, are there things you
want to do?” “As you think towards the future, what concerns you?”
Align with the patient’s values. “As I listen to you, it sounds the most important things are [x,y,z]."
Plan medical treatments that match
patient values.
“Here’s what I can do now that will help you do those important things. What do you think about it?“ “Trying to
force calories down a tube won’t make you feel any better or live any longer. What do you think about talking about
things that we can do that will help you going forward?”
Expect questions about more
artificial nutrition and hydration
“Here are the pros and cons of what you are asking about. Overall, the studies of artificial nutrition and hydration in
advanced illness tells me that trying it would do more harm than good at this point.“ “’Pleasure feeding’ or ‘comfort
feeding’ focuses on the humanness of enjoying the taste of favorite foods in the company of those we most enjoy. If
calories won’t fix their disease trying to push them will likely do more harm than good.”
Talk about continuing to provide
aggressive care but now focused on
comfort rather than cure.
“We can help your [x] have as much good time as they can going forward. We’ll focus on the joy of being able to
taste food and be around family. Does that sound like a good plan?”
vitaltalk.org

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ARTIFICIAL NUTRITION & HYDRATION
VOLUNTARY STOPPING EATING & DRINKING (VSED)

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Voluntary Stopping Eating and Drinking (VSED)
• Why?
– To preserve patient autonomy.
– To retain control.
– To hasten death because of unacceptable suffering without
infringing on fundamental ethical principles of Western
society.
– “Being tired of life” or “having it done”.
– Viewing themselves as a burden to their family members.

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Voluntary Stopping Eating and Drinking (VSED)
• Variant of stopping life-sustaining treatment.
• Not physician assisted suicide (PSA):
– Provider must assess decision making capacity.
– Provider need only agree not to interfere.
– Provider should be prepared to address symptom
burden.
• VSED usually leads to death in 1-3 weeks.
“The desire for a hastened death regularly occurs, but such thoughts are frequently kept secret by patients
unless clinicians specifically inquire.”
BMC Palliat Care. 2014 Jan 8;13(1)
Ann Intern Med. 2000 Mar 21;132(6):488-93
Widener Law Rev. 2011, 17: 351-361

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ARTIFICAL NUTRITION & HYDRATION
CASE STUDIES

25. 25
Case Study
A 49-year-old male came into the cardiac care unit with an inferior wall myocardial
infarction, and shortly thereafter coded. Resuscitation attempts succeeded;
however, over the course of a few days he went into multisystem failure. On a
respirator, receiving multiple medications to support life, and unable to eat anything
by mouth or to tolerate tube feedings, the nursing staff were concerned with his
nutritional status. An ongoing debate occurred between the physicians and nurses,
with the physicians maintaining that he was not “viable enough” for total parenteral
nutrition (TPN) but if his condition were to stabilize he would be a candidate. The
nurses argued that without adequate nutrition the patient would never stabilize
and heal; they felt that he was being starved to death. The intense emotional
response of the nurses led the physicians to rethink their approach to care. After 10
days without food and still in multisystem failure, the patient was started on TPN.
Regardless, he died several days later.
Life support is life support
www.practicalbioethics.org/files/case-study/artificial-nutrition-and-hydration.pdf

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Case Study
Mrs. J is an 85-year-old woman with advanced dementia and Stage IV non-small cell lung cancer (NSCLC), being
cared for at home. Her daughter was distressed that her mother was no longer able to eat and drink “sufficient
quantities to sustain life.” Feeding her had become a battle—she spat out her food, turned her head away, and
struck out whenever attempts were made to feed her. The daughter asked about placement of a feeding tube so
that her mother could be fed “passively” without the “stress” of attempted oral feeding. She expressed that this
seemed such a “minor procedure” with the potential for great benefit to her mother. The daughter described her
mother as a fiercely independent woman whose husband (her father) had died shortly after her birth. She had
never remarried and had worked two minimum wage jobs to support her daughter, as well as attending evening
classes in a community college. She was described as a woman who rarely asked for help for herself but had always
extended a helping hand to others. The Catholic Church was reported as a place of comfort for her.
This elderly and much-loved woman did not have advance directives and had become increasingly withdrawn and
uncommunicative over the past decade. Earlier conversations between the daughter and her mother did not reflect
what she would want if she was no longer able to eat and drink independently, although she had expressed
throughout her life a dread of being dependent on others. Independence and self-sufficiency were fundamental
values for her and ones on which she prided herself. This daughter cared deeply for her mother, acknowledging the
sacrifices her mother had made so that she could have a good education and opportunities in life that she herself
never had. When Mrs. J was no longer able to care for herself her daughter had taken her into her own home, and
had recently taken a leave of absence from work to care for her. Her husband and children were supportive.
Artificial Nutrition in Terminal Illness
www.practicalbioethics.org/files/case-study/artificial-nutrition-and-hydration.pdf

27. 27
www.practicalbioethics.org/files/case-studies/Pros-and-Cons-of-Tube-Feeding.pdf

28. 28
www.practicalbioethics.org/files/case-studies/Refusal-to-Eat.pdf