cme.medscape.

com

This article is a CME/CE certified activity. To earn credit for this activity visit:
http://cme.medscape.com/viewarticle/718781

From MedscapeCME Nurses

End-of-Life Care in the Setting of Cancer:
Withdrawing Nutrition and Hydration CME/CE

Linda Emanuel, MD, PhD; Frank D. Ferris, MD; Charles F. von Gunten, MD, PhD, FACP;
Jaime H. Von Roenn, MD
CME/CE Released: 03/24/2010; Valid for credit through 03/24/2011
Making Decisions About Life-Sustaining Treatment

Editor's Note:

This text has been excerpted and adapted from: Emanuel LL, Ferris FD, von Gunten CF,
Von Roenn J, editors. EPEC™-O: Education in Palliative and End-of-life Care for Oncology
(Module 11: Withdrawing Nutrition, Hydration Copyright The EPEC™ Project, Chicago, Ill,
2005). The EPEC™-O curriculum was produced by The EPEC™ Project, with major
funding provided by the National Cancer Institute, and with supplemental funding provided
by the Lance Armstrong Foundation.

Making Decisions About Life-Sustaining Treatment

Facilitating decision making and implementing decisions about life-sustaining treatments

are essential skills for clinicians. Impediments to good care include misconceptions about
legal and ethical issues, as well as unfamiliarity with the practical aspects of
implementation.

This educational activity discusses approaches to determining and implementing treatment

preferences in regard to the withholding or withdrawing of interventions. First, general
principles and approaches are covered. Next, specific issues of artificial nutrition and
hydration are covered in more detail. These issues frequently present a challenge in routine
practice, and they also provide an example of how to discuss withholding or withdrawing
treatments in general.

Role of the Healthcare Provider

All clinicians play an essential role in defining and implementing the plan of care, and
providing continuity of care as the goals evolve and change over time. The physician or
possibly the nurse practitioner or physician assistant will often take the lead in initiating
discussions about life-sustaining treatment, educating patients and families, helping
patients and families deliberate, and making recommendations about the treatment plan.
As part of this role, the clinician is responsible for ensuring that the patient's wishes are
documented and supported by the appropriate medical orders. Advance directives may be
in place and helpful, but may not necessarily make clear how to translate general goals or
treatment preferences into treatment of the present medical conditions. Consequently, it is
critical that physicians, nurse practitioners, and physician assistants all have the knowledge
and skills necessary for discussions, negotiations, and implementation of decisions related
to life-sustaining treatments.

Other members of the healthcare team play an essential role in formulating and
implementing the plan of care around issues of artificial nutrition and hydration, and will
need to be skilled in the issues related to these decisions as well. Nurses, social workers,
chaplains, speech therapists, and nutritionists/dietitians share in the responsibility of
educating the patient and family about artificial nutrition and hydration so that the patient
and family can make an informed decision. Nurses and other members of the healthcare
team are charged with implementing treatment orders.

Making decisions about artificial nutrition and hydration is fraught with intense emotions,
and the entire healthcare team needs to be able to support patients and families
emotionally and spiritually as they struggle with the implications of decision making and the
realities of disease progression.

Legal Perspective
All states in the United States have statutes covering issues related to withholding or
withdrawing life-sustaining treatments. The Quinlan case (1976) established that artificial
nutrition could be withdrawn even from a patient in a persistent vegetative state.[1] In 1983,
the President's Commission for the Study of Ethical Problems in Medicine and Biomedical
and Behavioral Research found that no treatments, including artificial nutrition and
hydration, were obligatory.[2] This was confirmed in the US Supreme Court decision on the
Cruzan case in 1990, which established that artificial hydration and nutrition are like other
life-sustaining
treatments.[3] It was upheld again in the Florida courts in the case of Schiavo in 2005.

It is also legal and ethical to withhold or withdraw nutrition and hydration for the patient who
lacks decision-making capacity.[4] States may differ in the degree of evidence that is
required if the patient lacks decision-making capacity. For example, in New York and
Missouri, there must be "clear and convincing evidence." In the other states, substitute
decision makers can make the decision.

Institutional policies of many hospitals or other healthcare institutions tend to include

considerations, perhaps drafted by ethics committees, to protect patients' rights and
interests and considerations, or possibly crafted by risk management officers to protect the
institution from risk. Institutional policies are often written in response to the general
perceived legal imperative to, when in doubt, provide treatment to prolong life. Institutional
policies may or may not be in the best interest of a particular patient. If the appropriate
goals of care are other than "life at all costs," then the written plan of care needs to be
specific enough to accomplish the intended goals.

Emergency medical technicians are regulated by statute, and sometimes by city ordinance.
Although requirements vary, in general, emergency medical technicians are required to
provide all resuscitative and life-prolonging treatments unless a do-not-resuscitate (DNR)
order, which complies with state-specific ordinances, is in place to the contrary.

Although only physicians and advanced practice clinicians can write orders, it is the
responsibility of the entire healthcare team to ensure that the patient's wishes (or parents' if
the patient is a child) are followed across care settings. In the hospital, one major study
demonstrated that the majority of patients in intensive care unit settings die without
attention to issues of life-sustaining treatment.[3] Many of these patients have undergone
some form of invasive medical treatment against their previously stated wishes.[5]

All too often, patients are transferred to the acute care setting, where inappropriate life-
sustaining measures are administered because the appropriate treatment plan and medical
care orders have not been completed and placed in the patient's chart. One study
demonstrated that fewer than 25% of advance directive orders were carried over from the
nursing home to the acute care
hospital.[6] The fact that medical care orders may not transfer across settings (eg, nursing
home, ambulance, acute care hospital) also exacerbates the problem.

Life-Sustaining Treatments
Table 1. Life-Sustaining Treatments

Resuscitation Diagnostic tests

Artificial nutrition and hydration Elective intubation
Surgery Antibiotics
Dialysis Other treatments
Blood transfusions, blood products Future hospital or intensive care unit admissions

There is a wide range of life-sustaining treatments that may be considered for an individual
patient and family. These include cardiopulmonary resuscitation, elective intubation and
mechanical ventilation, surgery, dialysis, blood transfusions or administration of blood
products, artificial nutrition and hydration, diagnostic tests, antibiotics, other medications
and treatments, and future hospital or intensive care unit admissions.

After determining the general goals of care, the clinician discusses specific treatments with
his/her patients and families and whether those treatments will possibly help achieve the
patient's overall goal. Asking a patient's preference for a scenario-specific invasive
intervention vs an alternative noninvasive intervention may help the clinician to get a
general idea of a patient's priorities for making treatment decisions. Decisions about
surgery and antibiotics are often strongly predictive of other invasive and noninvasive
decisions, respectively.[7]

Culture
Culture plays a role in decisions to withhold or withdraw care. For example, many studies
have shown that nonwhite patients are less likely than white patients to agree to DNR
orders or to withhold or withdraw care, and are less likely to have advance care directives.[8-
10]
In Asian cultures, filial piety, the obligation of children to care for their parents in gratitude
for the parent's caring and sacrifices, is a central value. Making a decision to withhold or
withdraw life support from a parent may be seen as unfilial.[11] If the integrity of the family as
a whole is valued more than the wishes of an individual family member, even the patient
who would not want life support may expect the family to do everything possible to prolong
his or her life. To do otherwise would bring dishonor on the family.

Different cultures may have varying views of the role of suffering. Although many
healthcare providers may support withholding life support at the end of life as a
compassionate act that prevents unnecessary suffering, not all patients share this value.
Some cultures view suffering as redemptive and something to be endured as a test of faith
rather than avoided. The idea that only God knows when it is time to die may also affect
how patients view the use of life-sustaining therapies.

Religion
Various religions have espoused specific opinions about the use of artificial hydration and
nutrition. Most teach that when death is inevitable and not due to the absence of hydration
or nutrition, withholding both can be appropriate. However, some religious leaders teach
that human beings must do all in their power to prolong life. In situations of conflict, it is
wise to engage leaders or teachers of the religious faith in question.

Weight Loss

Weight loss is a common feature and an independent poor prognostic sign in cancer.[12]
Various mechanisms have been proposed, including decreased caloric intake, increased
metabolic rate, specific nutritional or vitamin deficiencies, and disordered or futile metabolic
pathways. Because cancer is frequently accompanied by a loss of appetite and diminished
caloric intake, the hypothesis that provision of nutrients, either enterally or parenterally,
would improve quality of life or survival has been repeatedly tested over the past 30 years.
[13]
Unfortunately, except in limited circumstances for clearly defined subsets of patients, the
hypothesis has not been supported.[14] Because this finding contradicts popular wisdom,
clinicians need to both know the evidence base as well as develop specific skills and
approaches to discuss artificial nutrition and hydration with patients and families.

Clinical practice is frequently not guided by evidence.[15] Impediments to good care include
unfamiliarity with the evidence base, misconceptions about legal and ethical issues, lack of
training in discussing the issues, reimbursement of ineffective treatment, and insufficient
attention to alternative strategies to meet the needs of families and healthcare
professionals to show that they care for the patient.

Artificial Nutrition
It is "ordinary care" to provide oral nutrition to the patient who wants to eat. That includes
bringing food to the mouth even if the patient is too weak to do so. For the patient who
needs assistance, special attention to appearance, color, smell, and consistency may be
needed to make food appetizing. However, it is unethical and illegal to force the patient to
eat if the patient declines to do so.

Administration of nutrition by an alternate route is indicated if the patient is hungry and

cannot eat (ie, when there is a neurologic abnormality affecting swallowing or an
obstructing esophageal cancer).[16] The gastrointestinal tract should always be the route of
intake if it is functional.

There is no evidence that artificial nutrition alone improves functional ability or energy,
relieves fatigue, or improves survival or symptom control (except hunger) if it is the cancer
that is responsible for the anorexia and weight loss.[17-26]
Pathophysiology of Anorexia
The causes of anorexia are numerous.[27] The consequences of anorexia depend on the
composition of what continues to be ingested. The patient who takes in no calories
develops ketosis as fats and proteins are metabolized to an energy source.

Anorectic ketosis, in contrast to diabetic ketoacidosis, is experienced as a mild euphoria or

sense of well-being and analgesia. Supplemental carbohydrates or other foods interfere
with ketosis.[28]

Enteral Nutrition
Table 2. Effects of Enteral Nutrition on Survival

 Higher mortality
o 50% dead at 12 months
o 60% dead at 18 months
 No reduction in aspiration
 No reduction in risk for pneumonia

 No evidence of better symptom control

There are 2 common reasons cited for instituting enteral nutrition in cancer patients: to
improve fatigue or "strength" and to avoid "starving to death." Patients, family, and some
clinicians erroneously believe that the patient is weak because he or she is not eating.
Further, they erroneously believe that if the patient does not eat, he or she will die.

In contrast with conventional wisdom, there is no evidence that enteral nutrition improves
energy level or survival in the patient with progressive cancer. With the exception of
patients with a mechanical reason for not being able to eat (eg, an obstructing cancer or
stroke involving deglutition), cancer patients who report anorexia and cachexia do so for a
number of complex reasons. If the cancer cannot be reversed, the pathophysiology
underlying the causes of cancer cachexia and anorexia is not reversible. No study has
demonstrated improved outcome of enteral feeding over oral feeding alone. In contrast to
original expectations, percutaneous gastrostomy (PEG) tubes increase the risk for
aspiration rather than reduce it. The use of feeding tubes is associated with increased
mortality. Complications from PEG tubes have reached 35%.[26,29,30] In fact, enteral feeding
tubes can make matters worse, and are associated with infection, obstruction, edema,
ascites, and aspiration pneumonia.

In summary, there is no evidence that enteral nutrition improves survival or improves

quality of life for the general oncology patient.

There are reasons to believe that the patient with anorexia associated with advanced
cancer is not suffering because of it. In most cases, it is the meaning of not eating that
distresses patients and families. Finding meaning is an emotional and spiritual, not a
biological, issue. Although placement of a feeding tube may avert a discussion about the
meaning of anorexia, it will not treat it, and only sets the patient and family up for
disappointment later on.

Parenteral Nutrition
The weight of scientific evidence has shown no general benefit for parenteral nutrition in
patients with cancer.[13,31] This has even turned out to be the case in the surgical and
intensive care settings. Parenteral nutrition has been shown to be of benefit in limited
circumstances in which the gastrointestinal tract suffers prolonged toxicity (eg, bone
marrow transplant), or in the perioperative setting where there is preexisting malnutrition. In
fact, even in the setting of bone marrow transplant, there only appears to be a role when
there is prolonged, demonstrable inability to
eat.[21] This surprising conclusion is drawn from studies performed over the past 30 years. In
other words, the null hypothesis has proved to be true: Parenteral nutrition does not
improve survival or symptoms in patients with cancer. In fact, meta-analysis suggests that
patients with cancer who receive parenteral nutrition die faster than patients who do not.[18]

Artificial Hydration

One of the most common treatments associated with medical care is an intravenous (IV)
infusion of fluids. The indication is the maintenance of fluid and electrolyte balance when
the patient is temporarily unable to drink adequate volumes. The administration of isotonic
fluids subcutaneously (hypodermoclysis) is an underutilized, equally efficacious way to
administer fluids without the risk for IV access (infection, clot, bleeding) or the skills needed
to locate a vein.

Hypodermoclysis is performed by cleansing an area of skin with povidone and inserting a

narrow-gauge needle (usually 21 gauge or less) with cannula attached (eg, butterfly
needle) into the subcutaneous tissue (usually of the abdomen or thigh) and administering
fluids at a steady rate (about 1 mL/minute) to a volume of about 1500 cc/site per 24 hours.
Hyaluronidase is sometimes preadministered to increase the rate of absorption of the
solution, but there is no evidence that using it is superior to fluid administration without
hyaluronidase.[31]

The most common, inappropriate reason to consider IV fluids in the setting of symptom
control is to prevent or treat thirst and to prevent "dehydrating to death."

Pathophysiology of Dehydration
The conventional evidence base for dehydration comes from the study of normal
individuals and those with reversible conditions causing the dehydration. It is divided into
hyponatremic dehydration, in which salt loss exceeds water loss; hypernatremic
dehydration, in which water loss exceeds salt loss; and mixed dehydration, in which salt
and water loss are balanced. Diuretics, vomiting, diarrhea, osmotic diuresis, adrenal
insufficiency, edema, ascites, fever, laxatives, and postobstructive diuresis may all
contribute to dehydration. Patients dying of cancer without a confounding etiology usually
have a mixed pattern.

Symptoms of dehydration differ between those who are ambulatory and those who are bed-
bound. Whereas an otherwise healthy person will experience reversal of severe thirst,
fatigue, or malaise with rehydration, a seriously ill patient will not. There is no evidence that
IV fluids relieve thirst in the patient with advanced cancer. The same is true for fluids given
via an enteral feeding tube. In contrast, stopping medications with anticholinergic side
effects and administering good lip and mouth care has been shown to relieve thirst.[32-36]

Dehydration appears to be associated with endorphin release resulting in an associated

improvement in mood.

Common Concerns
Table 3. Common Concerns

 Are we legally required to “do everything”?

 Is it euthanasia when you withhold or withdraw artificial nutrition and hydration?

There are several common concerns that affect decisions about life-sustaining treatments
in general and withdrawal of hydration and nutrition, in particular[2]:

 Are clinicians legally required to provide all life-sustaining measures possible? No.
Clinicians are required to provide care that will accomplish treatment goals within
 the bounds of accepted medical practice. No physician is required to order care that
is futile (eg, total parenteral nutrition for a dying patient). Conversely, even when a
treatment might prolong life (eg, IV antibiotics for pneumonia), patients have a right
to refuse, and the physician and other healthcare providers have an obligation not
to provide or coerce.
 Is withdrawal or withholding of artificial hydration and nutrition euthanasia? After
decades of discussion in society, there is strong general consensus that withdrawal
or withholding of artificial hydration and nutrition is a decision/action that allows the
cancer to progress on its natural course. It is not a decision/action actively to seek
death and end life. By contrast, euthanasia actively seeks to end the patient's life.
 Can the treatment of symptoms associated with withdrawal of hydration and
nutrition constitute euthanasia? The intent of the clinician and the means used to
accomplish the intent are important. Opioids for pain, sedatives for restlessness,
and other treatments to control symptoms are not euthanasia when accepted
dosing guidelines are used. Avoid the rationale that says, "death is the treatment."
Symptom treatment alleviates symptoms; it does not intentionally cause death.
 Is it illegal to prescribe large doses of opioids to relieve symptoms of pain,
breathlessness, or other symptoms after artificial hydration and nutrition have been
withdrawn? Even very large doses of opioids or other drugs are both permitted and
appropriate, if the intent and doses given are titrated to the patient's needs.

Seven-Step Protocol to Discuss Treatment Preferences

Table 4. Seven Steps to Discussing Nutrition and Hydration (SPIKES)

 Setting: Be familiar with policies and statutes

o Appropriate setting for the discussion
 Perception: Ask the patient and family what they understand
 Invitation: Discuss/reconfirm general goals of care
 Knowledge: Establish context for discussion
o Discuss treatment preferences: Will nutrition and hydration achieve goals?
 Emotion: Respond to emotions
 Subsequent Planning: Establish and implement the plan

 + Review: Reassess and revise periodically

To guide the discussion of treatment preferences, particularly when considering withholding

or withdrawing a life-sustaining therapy, use the following modification of the 6-step
protocol, SPIKES,[37,38] for communicating bad news.

Reasonable clinicians may disagree about the extent to which specific treatment
preferences ought to be discussed, if such treatment will not help achieve the overall goals.
It is well established that if a treatment has no chance of achieving its intended benefit (eg,
performing cardiopulmonary resuscitation on a body whose head has been severed as a
result of trauma), it need not be offered. However, because chance for benefit is rarely
absolutely zero, and because discussion of treatment decisions is favored by patients and
builds trust, an approach to discussing these decisions is part of the skills set of the
physician and of the other healthcare team members who support the patient and family. In
approaching all discussions of withholding or withdrawing treatment, discuss general goals
of care first. Then discuss specific treatment preferences in light of whether they are likely
to help achieve the overall goal.

Physicians usually initiate discussions of treatment preferences. Other appropriate

members of the healthcare team may enhance the discussion and prevent subsequent
conflict within the team. They will have additional time to carry on the dialogue with the
patient and family. The team will also be able to provide valuable emotional support to the
patient, family, and each other.
Even though other members of the healthcare team participate in and/or conduct the
discussion, implementation of any decision requires a medical order. The attending
physician, nurse practitioner, or physician's assistant must sign the documentation and
assume full responsibility for its accuracy.

Applying 7 Steps to Discuss Nutrition and Hydration

Clinicians frequently perceive the discussion about whether to use or continue artificial
feeding and/or hydration to be difficult. Successful approaches are not customarily
demonstrated during professional training.[2] Food and water are widely held symbols of
caring, so withholding of artificial nutrition and hydration may be easily misperceived as
neglect by the patient, family, or other professional and volunteer caregivers.

Step 1: Become familiar with pertinent policies and statutes. Healthcare providers
need to be familiar with the policies of the institution and pertinent statutes where they
practice. Unfortunately, many clinicians presume that because their institution has a
specific policy (eg, all patients who cannot eat will have a PEG tube), this practice reflects
state or federal law. In fact, no state requires artificial nutrition and hydration when a cancer
patient cannot eat. Most states leave specific treatment decisions to be decided between
the patient and the physician.

Step 2: Ask the patient and family what they understand. Listen for how they make
sense of the relationship between the disease and eating and drinking patterns. For
example, if someone says, "If only she'd eat, she'd get stronger," this may reflect the need
to review why the doctor thinks the patient is weak. Similarly, "I don't want her to dehydrate
to death" may show the need to explain how normal dying occurs.

Step 3: Determine/reconfirm goals of care. Determine or reconfirm the general goals of

care. Examples are:

 "Can we review our overall goals for your care?"

 "Let me tell you what I understand that you want as we plan your care."

Talk about the general medical condition. For example, if the patient has advanced cancer,
establish an understanding of the overall situation. What is the expected course of the
cancer? Is anything meaningfully reversible?

Once the general goals of care have been confirmed, specific life-sustaining treatment
preferences can be discussed.

Step 4: Establish the context of the discussion. Be sure to establish the context in
which or for which artificial nutrition or hydration is being discussed. The classic
misstatement on the part of well-meaning physicians is, "Do you want us to do everything?"
This highly euphemistic and misleading question fails to acknowledge context. When are
we talking about? (Today, when the patient is recovering from an infection or the side
effects of chemotherapy, or when the patient is dying despite maximal medical therapy?)
"Everything" is much too broad and is easily misinterpreted by families, especially when
they believe that "everything" has not, in fact, been done.

Discuss artificial nutrition and hydration. Explore how artificial hydration and nutrition
will contribute to the overall goals of care or improve the situation. If the patient and family
hope to see improved energy, weight, and strength, then artificial fluid and nutrition are
unlikely to accomplish those goals. Help the patient and family to understand the goals for
which artificial nutrition and hydration are appropriate. (For example, in a hungry patient
who has a good performance status and an obstructing lesion of the esophagus, placement
of a G-tube will likely improve the patient's well-being.)

Discuss specific treatment preferences. Use language that the patient will understand. If
the patient is not fluent in English, use a translator, preferably someone who is trained in
these skills. Give information in small pieces. Reinforce the context in which the decisions
will apply. Stop frequently to check for reactions, ask for questions, and clarify
misunderstandings.

Some clinicians may argue that it is unnecessary and potentially confusing to patients and
families to ask them to decide about specific treatment preferences. Patients and families
may be ill-served if physicians regard the principle of autonomy as meaning that all
possible therapies must be offered from which patients and families choose, as though they
were choosing items from a menu in a restaurant. Nonetheless, it is often useful to discuss
and recommend withholding or withdrawing artificial nutrition and hydration in light of the
general or overall goals that have previously been established.

Aspects of informed consent. Informed consent is a fundamental ethical principle that

underlies contemporary medical care. Patients deserve a clear, complete understanding of
all therapies that are proposed for them. Some will want to know all of the details. Others
will prefer not to know anything.

Be prepared to describe in simple, neutral terms the aspects of artificial nutrition and
hydration in a manner that conforms to the principles of informed consent, including:

 The problem the treatment would address.

 What is involved in the treatment or procedure?
 What is likely to happen if the patient decides not to have the treatment?
 The benefits of the treatment.
 The burden created by the treatment.

Information that could be provided to patients and families who are making decisions with
regard to artificial feeding and hydration is provided in the Patient/Family Education
Handout, which is available for printing at the end of this activity.

Address misperceptions. Listen for cues, such as:

 "I don't want her to starve to death";

 "Dehydration is a miserable way to die"; and
 "We can't just let her die."

These statements often express goals for the family as much or more than they express
goals for the patient. These statements suggest that the patient and family have
misperceptions about the underlying situation or the meaning of signs and symptoms. They
may believe that lack of appetite and diminished oral intake of fluids are causing the
patient's level of disability. Most then make the assumption that if only the patient got more
fluids and nutrition, he or she would be stronger. Use clear, simple language to help the
patient and family focus on the true causes of the situation; for example:

 "The cancer is taking all of your strength";

 "The fact that your heart is so weak is what is causing you to lose your appetite and
feel so fatigued"; and
 "I can understand why you might think that, but she's dying of cancer, not
starvation."

If the patient is close to dying, make sure that the family knows that a dry mouth may not
improve with IV fluids. Relief is much more likely to occur with attention to mouth care and
oral lubricants.

In some patients, delirium may be related to dehydration, so a clinical trial of IV fluids may
be warranted. However, before starting, ensure that everyone is aware that there are other
causes of delirium that may not respond to fluids, and there is a risk that fluids will only
increase other physical symptoms (eg, edema, breathlessness) without relieving the
delirium.
Urine output normally declines in a patient who is dying; it is not just an indicator of
hydration. Urine output in the range of 300-500 mL/day is adequate. The large volumes (2-
3 L/day) that healthcare professionals associate with hospitalized patients are usually the
result of overvigorous IV infusions in patients with normal renal function and oncotic
pressure, and do not reflect usual output with oral hydration. Both high-volume infusions
and excessive urination may be a source of discomfort to the patient.

Step 5: Respond to emotions. During these discussions, respond to patient and family
anxiety, and acknowledge emotional content. Empathetic silence and acknowledgment of
the situation with a phrase, such as, "I wish things were different," may be all that is
needed. Parents, if the patient is a child, are likely to be very emotional and need support
from the physician and other members of the healthcare team. Patients, families, and
surrogates may be profoundly disturbed by the subject matter being discussed. If you find
that emotions are too challenging, ask other colleagues and/or members of the healthcare
team to assist.

Step 6: Establish a plan. Establish and implement a plan that is well articulated and
understood. The next steps may be as simple as planning to discuss the subject again at
the next visit, or convening a family meeting to further discuss the proposed treatment plan.
They may be as complex as organizing nursing, social work, and chaplaincy intervention,
or ensuring that a key family member living out of town is notified.

Time-limited trials. In some circumstances, a time-limited trial of artificial nutrition and

hydration may be warranted when it is unclear whether these treatments will achieve a
specific goal. For example, a Dobhoff tube may be placed during a hospitalization for
evaluation of new-onset fatigue and anorexia. It should be clearly stated at the outset what
the measures of success will be. "Tolerating" the feeding is not a very satisfying endpoint.
Reasonable endpoints are whether the patient feels stronger or is able to resume eating
after 2 weeks.

Document and disseminate the plan. Discuss treatment plans with other healthcare
professionals so that the plans may be carried out in a straightforward and organized
fashion. In healthcare institutions, the treating physician should discuss the plan with
nursing and house staff colleagues, at a minimum. After the appropriate orders are written,
document the discussion in the medical record, and talk about the plan with other members
of the healthcare team.

Step 7: Review and revise periodically. Patients and families change their goals of care
and treatment priorities periodically. Once presented with a situation and information (eg,
that fluids and nutrition are not helping and may be harmful), patients and families may take
some time to decide to change the plan of care. Even after stopping a therapy, review the
goals of care and treatment priorities periodically to ensure that the patient's choice is
durable. It is comforting to the patient and family to know that the plan can change at any
time.
Helping Family and Professionals With Their Need to Give Care

Family members and healthcare professionals frequently feel helpless in the face of
cancer.[39] Their advocacy for artificial nutrition or hydration may be a response to this
feeling. The advocacy may come from a misunderstanding of the situation (eg, she'll be
stronger if only she eats more; he won't die if he eats; her mouth won't be so dry if she has
an IV) or as an emotional response (eg, it's important to fight back). "Doing something" may
be an important motivation for the professional (for example, associating large urine output
as can only be obtained with an IV infusion as being equivalent to providing good medical
care).

As part of the discussion, identify the emotional need that is met by providing food and
water, particularly for families and other healthcare professionals. Don't just address issues
of artificial hydration and nutrition. Help the family find ways to demonstrate their caring in
the face of "letting nature take its course," and teach them the skills that they need to be
effective. A major goal is to permit the family and professionals to feel helpful rather than
helpless. Examples include:

 Eat for pleasure;

 Plan social interactions that don't center on meals;
 Read or watch movies together;
 Look at photo albums together;
 Participate in mouth care;
 Massage the extremities or feet with unscented oil;
 Do chores, such as housecleaning, gardening; and
 Reminisce and tell stories.

Normal Dying
Table 5. Normal Dying

 Loss of appetite
 Decreased oral fluid intake
 Artificial food/fluids may make situation worse
o Breathlessness
o Edema
o Ascites

o Nausea/vomiting
Loss of appetite and diminished fluid intake are a part of the normal dying process. Trying
to counteract these natural trends may lead to more discomfort for the patient without
affecting the outcome.

Near the end of life, patients and families may be concerned that there will be suffering
from thirst or hunger if the patient is not taking any fluids or nutrition. Help the patient and
caregiving family to understand that dehydration is a natural part of the dying process. It
does not affect the dying patient in the same way as a healthy person who feels thirsty on a
hot day or becomes dizzy on standing.

Let family members know that if the patient is not hungry, artificial fluids and hydration will
not help him or her feel better. Badgering the patient to eat or drink will only increase
tension and may cause the patient to become angry, depressed, or withdrawn if he or she
cannot comply.

In addition, make sure that family members and caregivers know that artificial fluids and
nutrition may make edema, ascites, pulmonary and other secretions, and dyspnea worse,
particularly if there is significant hypoalbuminemia.

Ensure that family and caregivers know that a state of dehydration in a patient who is bed-
bound and imminently dying may have some benefits. Pulmonary secretions, vomiting, and
urinary incontinence may be less severe. Dehydration may actually stimulate the
production of endorphins and other anesthetic compounds that help contribute to a
peaceful, comfortable death for many patients.

Discussing Hospice Care

A referral for hospice care is frequently perceived as challenging. It becomes easier if the
idea of hospice care is presented as a response to a need rather than something to turn to
when there is nothing left to do.[40]

Elicit the patient's and family's understanding of the current situation before discussing
hospice care. If there is an understanding that the main focus should be on comfort, quality
of life, and emotional and practical support, hospice care can be introduced as a way for
the physician to provide additional resources to care for the patient and family at this time.
Patients frequently identify the family as needing the most help. Family members identify
the need for a group that will help manage the case and coordinate numerous caregivers
and services. Hospice programs are an effective way to provide this.

About 10% to 15% of all patients referred for hospice care are disenrolled (graduate)
because they get better with the intensive care and support. There is no penalty for
disenrolling and becoming involved later, if needed.

Summary

The issue of withholding or withdrawing artificial hydration and nutritional therapy

challenges clinicians to be excellent communicators with patients and families. Establish
the overall goals first, and then evaluate whether artificial hydration or nutrition will achieve
those goals. Patients and families may then understand the limits of modern medical help
and can focus on the role that they can play in providing the best care.

Related Resources
Take-Home Messages

1. Patients have the right to refuse any medical treatment, even artificial nutrition and
hydration.
 2. Withdrawal or withholding of treatment is a decision/action that allows the disease
to progress on its natural course. It is not a decision or action intended to cause
death.
3. In rare circumstances, opioids and other drugs are rapidly titrated to treat physical
symptoms following accepted dosing guidelines. They might be perceived to
contribute to death; however, provided that the intent was genuinely to treat the
symptoms, then such use is not euthanasia.
4. Clinicians must familiarize themselves with the policies of the institution and
pertinent statutes where they practice.
5. Impediments to good care include misconceptions about legal and ethical issues,
as well as unfamiliarity with the practical aspects of withholding or withdrawing
treatment.
6. Patients may be transferred to an acute care setting where life-sustaining measures
are administered because the appropriate treatment plan and medical orders have
not been completed and placed in the patient's chart, or orders may not transfer
across settings.
7. If the patient and family hope to see improved energy, weight, and strength, then
artificial fluid and nutrition may not help accomplish those goals.
8. If the patient is close to dying, make sure the family knows that a dry mouth may
not improve with IV fluids. Relief is much more likely to occur with attention to
mouth care and use of oral lubricants.
9. Dehydration is a natural part of the dying process. Artificial fluids and hydration will
not help the terminally ill cancer patient feel better in most situations.

Clinical Pearls for Practice

 Discuss overall goals before discussing specific treatments.

 Acknowledge emotional components of decisions.
 Remember that dehydration may stimulate the production of endorphins and
other anesthetic compounds that will help contribute to a peaceful, comfortable
death for many patients.
 Make a partnership with the patient and the family caregiver; draw them into the
interdisciplinary team; and foster their active participation in the care plan.
 Avoid using loaded words, such as "do everything" and "starve to death."
 Consider that institutional policies may be written in response to the general
legal imperative to err of the side of prolonging life in cases of uncertainty or in
emergencies.

Appendix - Information for Patients and Families About Artificial Nutrition and Fluids

Readers are welcome to link to and print out the Appendix, "Information for Patients and
Families About Artificial Nutrition and Fluids," for use as a patient/family handout.
This article is a CME/CE certified activity. To earn credit for this activity visit:
http://cme.medscape.com/viewarticle/718781

[ CLOSE WINDOW ]
References
1. In re Quinlan, 70 NJ 10, 355 A2d 647, cert denied 429 US 922, 97 SCt 319, 50
LEd 2d 289 (1976).
2. Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal
Issues in Treatment Decisions. President's Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research. Washington,
DC: US Government Printing Office; 1983. Available at:
https://idea.iupui.edu/dspace/bitstream/1805/837/1/Deciding%20to%20forego
%20life-sustaining%20treatment%20-%20Table%20of%20Contents.pdf
Accessed January 16, 2008.
3. Cruzan v Director of Missouri Department of Health, 109 SCt 3240 (1990).
4. Council on Ethical and Judicial Affairs. Decisions to forgo life-sustaining
treatment for incompetent patients. In: Council on Ethical and Judicial Affairs
Reports on End-of-Life Care. Chicago: American Medical Association; 1998:30-
40.
5. The SUPPORT Principal Investigators. A controlled trial to improve care for
seriously ill hospitalized patients. The Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA.
1995;274:1591-1598. Abstract
6. Morrison RS, Olson E, Mertz KR, Meier DE. The inaccessibility of advance
directives on transfer from ambulatory to acute care settings. JAMA.
1995;274:478-482. Abstract
7. Fischer GS, Alpert HR, Stoeckle JD, Emanuel LL. Can goals of care be used to
predict intervention preferences in an advance directive? Arch Int Med.
1997;157:801-807. PMID: 9125014.
8. Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicity and race on
attitudes toward advance directives, life-prolonging treatments and euthanasia.
J Clin Ethics. 1993;4:155-165. Abstract
9. Blackhall LJ, Grank G, Murphy S, Michel V, Palmer JM, Azen S. Ethnicity and
attitudes toward life sustaining technology. Soc Sci Med. 1999;48:1779-1789.
Abstract
10. Crawley L, Payne R, Bolden J, Payne T, Washington P, Williams S. Palliative
and end-of-life care in the African-American community. JAMA. 2000;284:1518-
1521. Abstract
11. Frank G, Blackhall LJ, Mechel V, Murphy ST, Azen SP, Park K. A discourse of
relationships in bioethics: patient autonomy and end-of-life decision making
among elderly Korean Americans. Med Anthropol Q. 1998;12:403-423. Abstract
12. Dewys WD, Begg C, Lavin PT, et al. Prognostic effect of weight loss prior to
chemotherapy in cancer patients. Am J Med. 1980;69:491-497. Abstract
13. Koretz RL. Parenteral nutrition: is it oncologically logical? J Clin Oncol.
1984;5:534-538.
14. Shike M. Nutrition therapy for the cancer patient. Hematol Oncol Clin North Am.
1996;10:221-234. Abstract
15. Mercadante S. Parenteral versus enteral nutrition in cancer patients: indications
and practice. Support Care Cancer. 1998;6:85-93. Abstract
16. Brody H. Evidence-based medicine, nutritional support and terminal suffering.
Am J Med. 2000;109:740-741. Abstract
17. Schattner M. Enteral nutritional support of the patient with cancer: route and
role. J Clin Gastroenterol. 2003;36:297-302. Abstract
18. Parenteral nutrition in patients receiving cancer chemotherapy. American
College of Physicians. Ann Intern Med. 1989;110:734-736. Abstract
19. McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients:
the appropriate use of nutrition and hydration. JAMA. 1994:272:1263-1266.
Abstract
20. Heys S, Walker L, Smith I, Eremin O. Enteral nutrition supplementation with key
nutrients in patients with critical illness and cancer: a meta-analysis of
randomized controlled clinical trials. Ann Surg. 1999;229:467-477. Abstract
21. Clamon GH, Feld R, Evans WK, et al. Effect of adjuvant central IV
hyperalimentation on the survival and response to treatment of patients with
small-cell lung cancer: a randomized trial. Cancer Treat Rep. 1985;69:167-177.
Abstract
22. Bozzetti F, Amadori D, Bruera E, et al. Guidelines on artificial nutrition versus
hydration in terminal cancer patients. Nutrition. 1996;12:163-167. Abstract
 23. Roberts S, Miller J, Pineiro L, Jennings L. Total parenteral nutrition vs. oral diet
in autologous hematopoietic cell transplant recipients. Bone Marrow Transplant.
2003;32:715-721. Abstract
24. Ripamonti C, Twycross R, Baines M, et al. Clinical-practice recommendations
for the management of bowel obstruction in patients with end-stage cancer.
Support Care Cancer. 2001;9:223-233. Abstract
25. Brennan MF, Pisters PW, Posner M, Quesada O, Shike M. A prospective
randomized trial of total parenteral nutrition after major pancreatic resection for
malignancy. Ann Surg. 1994;220:436-441. Abstract
26. Chlebowski RT. Nutritional support of the medical oncology patient. Hematol
Oncol Clin North Am. 1991;5:147-160. Abstract
27. Jatoi A, Loprinzi CL. Current management of cancer-associated anorexia and
weight loss. Oncology. 2001;15:497-508. Abstract
28. Veech RL. The therapeutic implications of ketone bodies: the effects of ketone
bodies in pathological conditions: ketosis, ketogenic diet, redox states, insulin
resistance, and mitochondrial metabolism. Ketosis Prostaglandins Leukot
Essent Fatty Acids. 2004;70:309-319.
29. Persson CR, Johansson BB, Sjoden PO, Glimelius BL. A randomized study of
nutritional support in patients with colorectal and gastric cancer. Nutr Cancer.
2002;42:48-58. Abstract
30. Kaw M, Sekas G. Long-term follow-up of consequences of percutaneous
endoscopic gastrostomy (PEG) tubes in nursing home patients. Dig Dis Sci.
1995;40:920-921. Abstract
31. Berger EY. Nutrition by hypodermoclysis. J Am Geriatr Soc. 1984;32:199-203.
Abstract
32. Huang ZB, Ahronheim JC. Nutrition and hydration in terminally ill patients: an
update. Clin Geriatr Med. 2000;16:313-325. Abstract
33. Andrews M, Bell ER, Smith SA, Tischler JF, Veglia JM. Dehydration in
terminally ill patients. Is it appropriate palliative care? Postgrad Med.
1993;93:201-203.
34. Ellershaw JE, Sutcliffe JM, Saunders CM. Dehydration and the dying patient. J
Pain Symptom Manage. 1995;10:192-197. Abstract
35. Musgrave CF, Bartal N, Opstad J. The sensation of thirst in dying patients
receiving IV hydration. J Palliat Care. 1995;11:17-21.
36. Klein S. Clinical efficacy of nutritional support in patients with cancer. Oncology.
1993;7(suppl):87-92.
37. Buckman R. How to Break Bad News: A Guide for Health Care Professionals.
Baltimore: The Johns Hopkins University Press; 1992:65-97.
38. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES -- a
six-step protocol for delivering bad news: application to the patient with cancer.
Oncologist. 2000;5:302-311. Abstract
39. McClement SE, Degner LF, Harlos MS. Family beliefs regarding the nutritional
care of a terminally ill relative: a qualitative study. J Palliat Med. 2003;6:737-
748. Abstract
40. von Gunten CF. Discussing hospice care. J Clin Oncol. 2003;21(suppl):31-36.

[CLOSE WINDOW]

Authors and Disclosures

As an organization accredited by the ACCME, Medscape, LLC, requires everyone who
is in a position to control the content of an education activity to disclose all relevant
financial relationships with any commercial interest. The ACCME defines "relevant
financial relationships" as financial relationships in any amount, occurring within the
past 12 months, including financial relationships of a spouse or life partner, that could
create a conflict of interest.
Medscape, LLC, encourages Authors to identify investigational products or off-label
uses of products regulated by the US Food and Drug Administration, at first mention
and where appropriate in the content.

Author(s)

Linda Emanuel, MD, PhD

Author, researcher, educator, previously practicing clinician; Principal, The EPEC
Project; Director, Buehler Center on Aging, Heath and Society (where the EPEC
Project and its derivatives are housed), Northwestern University Feinberg School of
Medicine, Chicago, Illinois

Disclosure: Linda Emanuel, MD, PhD, has disclosed no relevant financial relationships.
Dr. Emanuel does not intend to discuss off-label uses of drugs, mechanical devices,
biologics, or diagnostics not approved by the US Food and Drug Administration (FDA)
for use in the United States.
Dr. Emanuel does not intend to discuss investigational drugs, mechanical devices,
biologics, or diagnostics not approved by the FDA for use in the United States.
Frank D. Ferris, MD
Director, International Programs, Center for Palliative Studies, San Diego Hospice &
Palliative Care, San Diego, California; Professor, Department of Family and
Preventative Medicine, University of California, San Diego, La Jolla, California; Co-
principal, The EPEC Project

Disclosure: Frank D. Ferris, MD, has disclosed no relevant financial relationships.

Dr. Ferris does not intend to discuss off-label uses of drugs, mechanical devices,
biologics, or diagnostics not approved by the US Food and Drug Administration (FDA)
for use in the United States.
Dr. Ferris does not intend to discuss investigational drugs, mechanical devices,
biologics, or diagnostics not approved by the FDA for use in the United States.
Charles F. von Gunten, MD, PhD
Medical Director, Center for Palliative Studies, San Diego Hospice & Palliative Care,
San Diego, California; Associate Clinical Professor, University of California, San Diego,
School of Medicine; Co-principal, The EPEC Project; Past Chairman, The American
Board of Hospice and Palliative Medicine

Disclosure: Charles F. von Gunten, MD, PhD, FACP, has disclosed no relevant
financial relationships.
Dr. von Gunten does not intend to discuss off-label uses of drugs, mechanical devices,
biologics, or diagnostics not approved by the US Food and Drug Administration (FDA)
for use in the United States.
Dr. von Gunten does not intend to discuss investigational drugs, mechanical devices,
biologics, or diagnostics not approved by the FDA for use in the United States.
Jaime H. Von Roenn, MD
Medical Director, Palliative Care and Home Hospice Program, Northwestern Memorial
Hospital, Chicago, Illinois; Professor of Medicine, Division of Hematology/Oncology,
Feinberg School of Medicine, Northwestern University, Chicago, Illinois; Co-Principal,
The EPEC Project; Editor, EPEC-O Curriculum; Member, Board of Directors, American
Society of Clinical Oncology; Editor-in-Chief, The Journal of Supportive Oncology

Disclosure: Jamie H. Von Roenn, MD, has disclosed the following relevant financial
relationships:
Received grants for educational research from: Par Pharmaceuticals
Serves as an advisor to: Par Pharmaceuticals (served as Principal Investigator of a
national, phase 2 clinical trial funded by the company)
Serves as a consultant for: Alder Biopharmaceuticals; Insys Therapeutics; and
SuperGen
Dr. Von Roenn does not intend to discuss off-label uses of drugs, mechanical devices,
biologics, or diagnostics not approved by the US Food and Drug Administration (FDA)
for use in the United States.
Dr. Von Roenn does not intend to discuss investigational drugs, mechanical devices,
biologics, or diagnostics not approved by the FDA for use in the United States.

Editor(s)

Susan Yox, RN, EdD

Director, Editorial Content, Medscape from WebMD

Disclosure: Susan Yox, RN, EdD, has disclosed no relevant financial relationships.
Cheryl Arenella, MD, MPH
Cancer Education Program Specialist, Contractor, National Cancer Institute, Office of
Education and Special Initiatives, Rockville, Maryland

Disclosure: Cheryl Arenella, MD, MPH, has disclosed no relevant financial

relationships.

Nurse Planner

Susan Yox, RN, EdD

Director, Editorial Content, Medscape from WebMD

Disclosure: Susan Yox, RN, EdD, has disclosed no relevant financial relationships.

CME Reviewer(s)

Laurie E. Scudder, MS, NP

Accreditation Coordinator, Continuing Professional Education Department, Medscape,
LLC; Clinical Assistant Professor, School of Nursing and Allied Health, George
Washington University, Washington, DC; Nurse Practitioner, School-Based Health
Centers, Baltimore City Public Schools, Baltimore, Maryland

Disclosure: Laurie E. Scudder, MS, NP, has disclosed no relevant financial

relationships.
Disclaimer
The material presented here does not necessarily reflect the views of Medscape, LLC, or
companies that support educational programming on www.medscapecme.com. These
materials may discuss therapeutic products that have not been approved by the US Food
and Drug Administration and off-label uses of approved products. A qualified healthcare
professional should be consulted before using any therapeutic product discussed. Readers
should verify all information and data before treating patients or employing any therapies
described in this educational activity.
MedscapeCME Nurses © 2010 MedscapeCME
This article is a CME/CE certified activity. To earn credit for this activity visit:
http://cme.medscape.com/viewarticle/718781