BY: REV. MYLES N. SHEEHAN, SJ, MD
Dr. Sheehan is senior associate dean, Education Program Administration,
and associate professor of Medicine/Geriatrics, Loyola University Chicago Stritch
School of Medicine, Chicago. Dr. Sheehan is also a faculty scholar with
the Open Society Institute's Project on Death in America, which
has partially sponsored his work.
Efficacy of Artificial Nutrition and Hydration Is Determined by Several
Clinical Factors
The use of feeding tubes, especially in long-term care settings, is a touchy
issue in Catholic health care. Decisions about feeding tube use can be difficult
for a variety of reasons: complicated clinical situations, strong emotions surrounding
these decisions on the part of families and caregivers, and conflicting perceptions
of church teaching. Given these circumstances, not all will agree about the
use of feeding tubes. But we can achieve much more clarity surrounding the issue
than is currently the case.
Better decision making about the use of feeding tubes for artificial nutrition
and hydration can be achieved by three interlocking actions:
- Considering the right paradigm for decision making
- Carefully evaluating the clinical details of the case in light of current
knowledge
- Understanding church teachings
The Right Paradigm
What does "considering the right paradigm" mean? Far too frequently,
we allow conflicts and controversies about the use of artificial nutrition and
hydration in the setting of persistent vegetative state (PVS) to influence our
care decisions in other, unrelated conditions. Decisions about artificial nutrition
and hydration in PVS are extremely difficult to make; good people with good
intentions may disagree. But the issues in PVS are not necessarily the same
when one is addressing other medical conditions. PVS usually involves a young
person in a tragic situation. It is ethically unsound to allow such a relatively
rare condition to influence judgments and actions in the far more common cases
of seriously ill patients, who are usually advanced in years and for whom the
prognosis with or without a feeding tube is not good. The current tendency
to allow PVS issues to prevail in feeding tube discussions is a bit like using
conjoined twins as the paradigm for obstetrics. Both conditions are rare and
tragic, and their management is morally and medically controversial. Extreme
cases provide little insight into common ones.
Both the medical and ethical issues involved in the vast majority of cases
in which the patient has a swallowing disorder, decreased consciousness, or
some other reason for not being able to orally receive an adequate amount of
food and water are often quite different than for cases of PVS. Regrettably,
some of the recriminations around feeding tube removal in cases of PVS have
polarized questions of feeding tube placement in cases that have very different
prognoses. This confusion sometimes leads patients, family members, and health
care professionals to take a moral stand without thinking carefully enough about
the clinical details. Basing judgments on incomplete data is bad medicine, and
even worse ethics.
Clinical Issues of Feeding Tube Use
Both the decision to use a feeding tube and the care of a patient with such
a feeding tube requires sophisticated medical knowledge, clinical skill, and
ongoing medical attention. The use of feeding tubes requires clinicians to take
four necessary actions:
- Weighing the indications and contraindications for feeding tube placement
- Choosing from several types of feeding tubes and selecting a method of placement
- Considering what actually occurs when a feeding tube is placed (because
the tube is only the vehicle by which nutrients and fluids are administered,
the details of the feeding are critical for success)
- Realistically understanding potential complications, both catastrophic and
minor
For some, this review of the key clinical considerations in the use of feeding
tubes and medically assisted nutrition and hydration may be more than they really
want to know. But rudimentary knowledge of some of the medical issues at stake
is essential for any sort of reasoned ethical approach. One cannot make ethical
decisions in clinical situations without an appreciation of medical reality.
Indications and Contraindications Feeding tubes are used when the patient
has difficulty in swallowing, diminished consciousness, or a need to supplement
inadequate oral intake when, for a variety of reasons, he or she cannot eat
or drink enough material to maintain health or sustain life. Feeding tubes may
be indicated when an individual has had a head injury, is in a coma, or has
some other type of neurologic condition, such as a stroke or brain tumor, that
prevents swallowing. Feeding tubes may also be used to bypass an obstruction
in the esophagus or pharynx. In a severe illness, a feeding tube may allow adequate
nutrition to be given to a person who is otherwise too debilitated to eat. In
dementing illnesses, feeding tubes are sometimes used when individuals seem
unable to remember how to eat or drink and therefore no longer swallow, even
when food is placed in their mouths.
Feeding tubes are also used to prevent aspiration in a variety of conditions.
Aspiration occurs when food, gastric contents, or oral secretions enter the
lungs. Aspiration commonly results in pneumonia. For example, a person who has
had a stroke but is otherwise awake and alert may have difficulty in swallowing;
as a result, food or liquids go into the lungs rather than the esophagus and
stomach. Feeding tubes do not prevent all aspiration into the lungs. Chronically
ill, debilitated individuals with feeding tubes frequently have bouts of aspiration
pneumonia even if they are not given any food or liquid by mouth. All individuals
have some regurgitation of material from the stomach that heads toward the lungs
via the esophagus. Saliva and other material from the pharynx can potentially
end up in the lungs. In healthy individuals this occurrence is minor, and the
normal processes of swallowing and other muscular reflexes in the pharynx and
esophagus protect the lungs. But in individuals who are already ill, have diminished
consciousness, or difficulties swallowing — precisely the people for whom
feeding tubes may be a consideration — this natural defense may be weakened,
leading to aspiration pneumonia despite the presence of a feeding tube.
Absolute contraindications to feeding tube placement include conditions in
which the feeding formula or water cannot be absorbed by the body or the gastrointestinal
tract is obstructed. An example is an individual with cancer that has spread
to the intestines and grown so that the intestinal lumen is closed. Using a
feeding tube in this situation would result in vomiting and severe abdominal
pain. Other contraindications include individuals who are in such severe kidney,
heart, or liver failure that the body cannot process, metabolize, or excrete
the nutrients or fluids that would be given by a feeding tube. An example of
a relative contraindication to beginning the use of nutrition and hydration
through a feeding tube is a person in the very last stages of cancer. Ceasing
to drink or eat in the last few days of life is part of the dying process. Inserting
a feeding tube and administering formula and fluids runs a risk of fluid overload,
the development of edema, and severe respiratory difficulties.
Types of Feeding Tubes Once appropriate indications for the use of a
feeding tube are noted, a choice must be made regarding the type. Feeding tubes
come in a variety of types. Nasogastric feeding tubes are thin tubes inserted
into the nostril, threaded into the nasopharynx, and then advanced down the
esophagus into the stomach or, frequently, into the first portion of the duodenum.
Gastrostomy tubes are inserted directly into the stomach, either surgically
or, more commonly, by placing an endoscope through the skin. This latter type
of type placement, commonly known as a PEG (percutaneous endoscopic gastrostomy)
tube, involves passing an endoscope through the mouth, then into the esophagus
and stomach, as is routinely done in the investigation of ulcers, abdominal
pain, or esophageal reflux. Once the endoscope is in the stomach, the physician
performing the procedure positions the lighted scope next to the front wall
of the stomach. The light within can be seen as a red glow on the surface of
the abdomen; it guides the placement of an incision through which a tube is
placed into the stomach or advanced into the duodenum. Feeding tubes can also
be placed more distally in the gastrointestinal tract. Jejunostomy tube placement
can be performed either surgically or by a method similar to PEG tube placement;
this tube is advanced into the jejunum.
Why would clinicians use one feeding tube rather than another? All feeding
tubes are associated with some aspiration of saliva, esophageal contents, and
regurgitated stomach contents. For short-term use — up to approximately two
weeks — a nasogastric feeding tube can be a temporary therapeutic measure.
These tubes, however, can press against the delicate lining of the nostrils
and pharynx and lead to ulceration. They also can interfere with drainage from
the sinuses and lead to blockage and infection. Although they are sometimes
used for a prolonged period of time, the risks of ulceration and infection make
them a less-than-ideal choice. Some patients must be restrained so that, in
a moment of confusion, they do not pull on the tube and dislodge it.
Gastrostomy tubes are indicated when tube feeding will be needed for more than
two weeks. Surgically placed gastrostomy tubes are inserted when a person has
had previous abdominal surgeries or when placing the tube endoscopically would
be dangerous. PEG tube placement is normally well tolerated in appropriate patients.
Because PEG tubes require sedation, patients who are extremely ill or who have
serious breathing difficulties can be at risk of complications from drops in
blood pressure or respiratory arrest during placement. These complications are
rare. Other complications that occur with PEG tube placement include perforation
of the gastrointestinal tract, infection of the abdominal cavity (known as peritonitis),
bleeding, and local infection at the site of the tube placement. Serious complications
are uncommon.
Jejunostomy tubes are used when the patient has persistent problems with aspiration
of stomach material into the lungs. In these situations, a tube is placed in
the jejunum, the second portion of the small intestine. A jejunostomy tube may
limit massive aspiration from the stomach into the lungs. Jejunostomy tubes
require the use of different formulas than other feeding tubes (sometimes more
expensive than gastrostomy tube formulas), and patients can have more difficulties
with diarrhea. Jejunostomy tubes are associated with the same risks as gastrostomy
tubes; they can also be placed in the jejunum through the skin by introducing
a tube into the stomach and then threading it into the jejunum.
Whether placed nasally, in the stomach, duodenum, or jejunum, a feeding tube
requires feeding formula and fluid prescribed by a physician and frequently
based on the recommendations of a registered dietician. The feeding formulas
are usually commercially prepared liquids that contain mixtures of carbohydrates,
fats, proteins, vitamins, and minerals. Depending on the concentration of the
solution, the fluid losses of the patient, and other considerations, additional
water must be added to the feeding solution to avoid dehydration. Tube feedings
can be ordered as bolus feedings (where a relatively large amount is given over
a short period of time several times a day) or through a continuous drip in
which the solution is administered at a precise rate for 18 or more hours a
day. The type of feeding solution and delivery depend on a number of factors.
Patients who are tube-fed require careful monitoring — especially initially — of
their fluid status, metabolic parameters, and overall nutritional condition.
Bolus feedings can allow a person to be mobile when not being fed, but they
do have a higher risk of aspiration. Drip feedings carry a lesser risk of massive
aspiration but limit mobility and independence.
Aside from the small but real possibility of complications with feeding tube
placement and the danger of aspiration, feeding tubes can be accompanied by
diarrhea and other complications. Overemphasizing these risks would be irresponsible,
however. In fact, such complications are most frequently annoyances and irritants
rather than major disasters. Many patients tolerate feeding tubes and tube feeding.
However, the use of feeding tubes is not carefree. Diarrhea, transient pneumonia,
restraints that keep a confused patient from pulling a tube out, severely restricted
mobility, and occasional clogging by pill fragments are day-to-day occurrences
with feeding tubes. Feeding tubes are burdens, but the degree of burden varies
from patient to patient.
Assessing the Efficacy of Artificial Nutrition and Hydration with Feeding
Tubes The ethical controversy surrounding decisions to withhold nutrition
and hydration in persons in a PVS makes it clear that feeding tubes can keep
people alive for years. This obvious fact does not support an extrapolation
to other situations in which feeding tubes may be considered. Individuals in
PVS tend to be relatively young and healthy except for the injury or accident
that resulted in the vegetative state. As a result, they often have long life
spans. Whether artificial nutrition and hydration offer the same benefit to
those who receive feeding tubes most often — usually aging individuals who
may be chronically ill or who have multiple conditions with a greatly diminished
functional status — is not clear.
Not much literature exits on the efficacy of artificial nutrition and hydration
in maintaining life or improving function. Two studies, however, suggest that
the placement of feeding tubes is associated with a high mortality rate. The
mortality rate is not a result of the tubes themselves — rather, feeding
tubes are often placed in people who are dying. Published articles suggest that
the outcome of artificial nutrition and hydration depends heavily on the underlying
condition of those who undergo this procedure. A review of hospitalized Medicare
beneficiaries who underwent gastrostomy tube placement in one year (1991) revealed
a 15 percent mortality rate in the hospital and an overall mortality rate of
nearly 24 percent at 30 days and slightly more than 80 percent in 3 years.1
A study of Veterans Administration (VA) patients who received a PEG tube over
a two-year period showed that almost a quarter of the patients died during the
hospitalization in which the PEG tube was placed. Of the group of patients in
this study, the median survival was only 7.5 months. The results of the VA study
indicate that PEG tubes are placed in severely ill patients who have a very
poor life expectancy, many of whom are terminally ill.2 The conclusions
of the study's authors demand careful reflection: "The substantial
mortality rates may be reason to consider that some enterally fed patients who
do not have swallowing disorders are not dying because of a lack of nutrition,
but rather, lack the need to eat because they are dying."3
Ethical Grounding for Decision Making About Artificial Nutrition and Hydration
For Catholic health care, sound medical decision making requires good clinical
judgment and a conscience informed by the teachings of the church. Appropriate
sources for authoritative teaching about artificial nutrition and hydration
include the Ethical and Religious Directives for Catholic Health Care Services
the 1993 statement "Nutrition and Hydration: Moral and Pastoral Considerations"
from the United States Conference of Catholic Bishops Pro-Life Committee, and
the remarks on this topic by Pope John Paul II made on October 2, 1998, during
the ad limina visit of a group of bishops from the United States. All
three documents show substantial agreement on the presumption in favor of medically
assisted nutrition and hydration.
The Ethical and Religious Directives state, "There should be a
presumption in favor of providing nutrition and hydration to all patients, including
patients who require medically assisted nutrition and hydration, as long as
this is of sufficient benefit to outweigh the burdens involved to the patient."4
The Holy Father echoes the presumption in favor of nutrition and hydration.
He differentiates between the right to refuse overzealous treatments that prolong
dying "from the ordinary means of preserving life, such as feeding, hydration,
and normal medical care." Pope John Paul's statement is similar in
tone and content to the Ethical and Religious Directives: ". . .
while giving careful consideration to all the factors involved, the presumption
should be in favor of providing medically assisted nutrition and hydration to
all patients who need them."5
Clinicians looking for guidance from these documents need to focus on their
responsibility as physicians. Only physicians have the competence to make medical
decisions. Neither the bishops nor the Holy Father have the competence to make
a medical decision. The bishops and the pope do, however, have the responsibility
of authoritative moral teaching. Thus, they consider the tradition of the church
and the situation of the times when making recommendations about what is appropriate
from an ethical perspective. Our times are filled with considerable challenges
to respect for the dignity of the human person. These can be seen in attitudes
in favor of euthanasia of the sick and elderly, for example, and in a callous
lack of concern for the basic needs of those who cannot care for themselves.
All the statements mentioned above make it clear that food and water must be
made available to people who can eat or drink. For those individuals who cannot
eat or drink, a presumption in favor of medically assisted nutrition and hydration
exists. As authoritative teachers who guard the faith, the bishops and the Holy
Father must protect the value of life from conception to natural death; thus
they make this presumption clear. But this does not translate into a requirement
that a feeding tube be used in every clinical situation. As Pope John Paul II
stated, careful consideration must be given to all the factors involved in the
decision, meaning that the medical details of the case are crucial.
The word presumption means what it customarily means. It is not a rule
without exceptions. A presumption in favor of medically assisted nutrition and
hydration means that clinicians should use feeding tubes unless a good reason
to the contrary, based on their knowledge and experience, exists. Creditable
reasons that would overrule a presumption in favor of tube placement include:
- A medical contraindication to tube placement
- A prudent medical judgment that medically assisted nutrition and hydration
would not likely change the outcome (the patient is dying from an underlying
condition and tube placement would, at best, prolong the dying process or
possibly even hasten death)
- A decision that the burdens of the treatment would outweigh the benefits
Thus, the presumption in favor of medically assisted nutrition and hydration
is not relevant when a person is in the last days of battling cancer or a terminal
illness, such as severe congestive heart failure. The results of studies of
Medicare beneficiaries and VA patients also suggest that the presumption has
less force in persons who have a limited life expectancy because of medical
illnesses and poor functional status.
Making Clinical Decisions
How does one synthesize clinical experience and church teaching into actual
clinical decision making? A few rules of thumb may be helpful.
- Always make sure that persons who can swallow receive oral fluids and food.
Removing food and fluids from those who can eat and drink on their own or
with the assistance of another person is never appropriate.
- Do not offer medically assisted nutrition and hydration to those whose failure
to eat or drink is part of the last stages of dying, such as with terminal
cancer or advanced congestive heart failure. In these cases, the burdens of
medically assisted nutrition and hydration are extremely high and benefit
is minimal. These treatments could potentially cause premature death and increase
suffering.
- Be cautious in using feeding tubes in persons with end-stage dementing illnesses
or multiple medical illnesses and limited functional status. The benefits
are uncertain and the burdens are not trivial.
- Use feeding tubes in situations of transient swallowing problems with a
reasonable hope of recovery. For example, an older individual with moderate
Parkinson's disease may, in the setting of a flu-like illness, have a
severe exacerbation of Parkinson's and difficulty swallowing. This can
lead to a vicious cycle in which the person cannot take the anti-Parkinsonian
medication. In this setting, a feeding tube can allow for administration of
medication, preservation of fluid and electrolyte balance, and recovery of
function.
- The use of feeding tubes in PVS remains controversial. Because a period
of time is necessary to make the diagnosis, presume the placement and use
of a feeding tube at least as a trial measure to see if any recovery of function
occurs.
- Remember that the presumption in favor of medically assisted nutrition and
hydration is like the presumption in favor of resuscitation in the setting
of cardiac arrest. It is strongly favored, but some situations exist in which
it makes no sense and may be clinically wrong.
- A key factor in placing feeding tubes is informed consent. In the United
States, a tube cannot be placed without the agreement of the patient or his
or her surrogate. In Catholic health care institutions, a person can refuse
therapy when he or she, making a free and informed decision, feels the burdens
outweigh the benefits, unless withholding or withdrawing the procedure would
be contrary to Catholic moral teaching.6 Those cases in which the
caregiving team believes a feeding tube is strongly indicated and that the
patient or surrogate is not free or informed — or the action is contrary
to Catholic moral teaching — necessitate institutional review and discussion,
leading to the establishment of policy on the handling of such cases.
Struggles over Medically Assisted Nutrition and Hydration as a Sign of the
Times
Discussions of medically assisted nutrition and hydration may have unfortunately
kept those of us in Catholic health care from looking more carefully at the
underlying issues. We live in a society characterized by powerful and contradictory
tendencies. These include an increasing disrespect for life, open support for
euthanasia and assisted suicide, and conversely, a highly aggressive technological
approach to medical problems, especially in the care of the dying, that may
provide a narrow answer but ignore the patient's greater needs. Those who
care for the elderly and chronically ill, or for other patients for whom a decision
about feeding tubes and medically assisted nutrition and hydration is not uncommon,
must carefully examine the issues beneath the surface that can drive feeding
tube placement.
We need to look more closely at how we approach feeding difficulties in our
institutions. Feeding a person with dementia can be very time consuming. Some
feeding tube decisions may be made because of a lack of staff necessary for
hand-feeding. We should make staffing decisions and create care plans to ensure
that these basic needs are met, although that will not be easy. Some nursing
home administrators feel forced to push for feeding tubes out of a concern that
state officials will treat weight loss and dehydration in nursing home residents
with punitive sanctions. Some may make that attempt. Catholic health care, however,
would do this nation a service by developing care protocols that emphasize a
variety of interventions that make it clear that residents are not neglected
and that ordinary means are used to provide nutrition and hydration to persons
who, for a variety of reasons, have difficulty eating and drinking.
We also need to consider that difficulties with nutrition and hydration are
often a sign that a person is approaching the end of life. These difficulties
will not cause death. In the care of older persons with advanced dementia or
other late-stage illnesses, the underlying approach should be one of palliative
care. Determining whether use of a feeding tube makes sense is vital. Bringing
family members into care planning is wise. Encouraging family members to assist
with feeding and other aspects of palliative care can help assuage guilt and
alleviate demands for technological response to the commonly expected decline
that comes at the end of life.
Finally, some of these situations are ambiguous. If the care of patients was
clear-cut, our decisions would be simpler. But it is not, and the church realizes
that good people can only do their best. The teaching of the bishops and the
Holy Father about a presumption in favor of medically assisted nutrition and
hydration does not remove clinical ambiguity. Rather, it means that physicians
and other caregivers need to grow in skill and competence and pay careful attention
to individual circumstances, which are fundamental to making decisions for a
particular patient. Efforts also need to be redoubled to provide care, comfort,
and solace for people who are facing the end of life.
NOTES
- M. D. Grant, M. A. Rudberg, and J. A. Brody, "Gastrostomy Placement
and Mortality Among Hospitalized Medicare Beneficiaries," Journal
of the American Medical Association, vol. 279, 1998, pp. 1973-1976.
- L. Rabeneck, N. P. Wray, J. N. Petersen, "Long-Term Outcome of Patients
Receiving Percutaneous Endoscopic Gastrostomy tubes," Journal of General
Internal Medicine, vol. 11, 1996, pp. 287-293.
- Grant, et al.
- United States Conference of Catholic Bishops, Ethical and Religious Directives
for Catholic Health Care Services, 2001, Directive 58, p. 31.
- L'Osservatore Romano, October 7, 1998.
- United States Conference of Catholic Bishops, Ethical and Religious Directives
for Catholic Health Care Services, -001, Directive 59, pp. 31-32