Vol. 40 No.

2 August 2010 Journal of Pain and Symptom Management 309

Ethical Issues in Palliative Care

Series Editors: Muriel Gillick, MD, and Gregg K. VandeKieft, MD, MA

Brain Death: Ethical Challenges to Palliative

Care Concepts of Family Care
Solomon Liao, MD and Shiho Ito, MD
University of California (S.L.), Irvine, California; and Vitas Hospice of Orange County (S.I.),
Orange, California, USA

Abstract
Brain death is a controversial issue that is often difficult for families to understand or accept.
Palliative care interventions can help families to accept the death. However, delaying
pronouncement of brain death may be detrimental to the family and lead to financial, ethical,
and legal complications, including the potential for insurance fraud. We describe a case of
brain death in which the passage of time along with continuation of life support without
concomitant testing for brain death led to decreased acceptance of the patient’s death by the
family. Clinicians should weigh the risks and benefits of harm to the family when deciding
how long to keep a brain dead patient on a ventilator. Pronouncement of death, which is good
basic medical care regardless of the cause or mechanism of death, should not be delayed for
family considerations. Risk management should be involved early in the decision process, if
life support is withdrawn without the family’s assent. J Pain Symptom Manage
2010;40:309e313. Ó 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc.
All rights reserved.

Key Words
Ethics, brain death, family care

Introduction believe that further medical care is nonbenefi-

Brain death remains a controversial ethical
issue. The controversy is reflected in the differ-
ing state laws regarding this issue and even in
a recent white paper by the President’s Coun-
cil on Bioethics.1 Families often have a difficult
time grasping or accepting this concept. This
lack of understanding or acceptance creates
challenges for health professionals who may
Address correspondence to: Solomon Liao, MD, Univer-
sity of California, Irvine Medical Center, 101 The
City Drive, Building 26, ZC4076H Orange, CA
92868, USA. E-mail: ssliao@uci.edu
Accepted for publication: February 8, 2010.
cial or even ‘‘futile.’’2 However, past legal opin-
ion published in the palliative medicine
literature suggests that there may be benefit to
the family by continuing to provide medical
care to a brain dead patient.3 The argument is
that because no further harm can be done to
the patient if the patient is already dead, the
risk-benefit analysis is in favor of continuing
care until the family is ready. Likewise, some bio-
ethicists have argued that neither the physician’s
professional autonomy nor considerations of re-
source utilization justify overriding the patient’s
or family’s wishes even in cases of futility.4
The American Academy of Neurology pro-
vides practice parameters for the determination

Ó 2010 U.S. Cancer Pain Relief Committee 0885-3924/$esee front matter

Published by Elsevier Inc. All rights reserved. doi:10.1016/j.jpainsymman.2010.02.016
310 Liao and Ito
of brain death in adults.5 These parameters re-
quire clinical evidence of brain death in the ab-
sence of complicating medical conditions, drug
intoxication, or poisoning. Clinical evidence of
brain death includes coma or unresponsive-
ness, the absence of brain stem reflexes, and ap-
nea. Common complicating medical conditions
are hypothermia (core temperature less than
33 C); severe electrolyte, acid-base, and endo-
crine disturbances; and severe hypotension
(systolic blood pressure <90 mm Hg). A second
clinical evaluation is recommended six hours
later. Optional confirmatory tests include
cerebral angiography, electroencephalogram,
somatosensory evoked potentials, or nuclear
brain scan.
We present a case in which the continued
use of a ventilator in a brain dead patient
may have increased the risk of harm to the
family. Providing care and support to families
is one of the fundamental tenets of palliative
care. The concept of providing medical inter-
ventions to the patient to treat the family is ac-
cepted in palliative care, provided the patient
agrees with this approach or is not harmed
by the interventions. This principle is the foun-
dation behind a new law in California, which
came into effect in January 2009, requiring
hospitals to provide families of brain dead pa-
tients a reasonable ‘‘brief period of accom-
modation. from the time that a patient is
declared dead’’ to the time of ‘‘discontinuation
of cardiopulmonary support for the patient.’’6
However, these well-intentioned medical inter-
ventions may impede the family’s acceptance
and grieving process. When does maintaining
the patient’s biological functioning result in
harm to the family and create ethical and legal
problems? Issues of resource utilization (jus-
tice), legal implications, and potential insur-
ance fraud also will be discussed.
Case Report
T. K. was a 58-year-old Korean gentleman who
was found unconscious on the floor at home.
Paramedics intubated him in the field and
brought him to a local hospital. A computed to-
mography (CT) scan of the brain revealed an
extensive right subarachnoid hemorrhage. He
was subsequently transferred to a Level 1
trauma hospital for a higher level of neurosurgi-
cal care. While in the emergency department,
Vol. 40 No. 2 August 2010
he became hypotensive, requiring initiation of
a vasopressor. A repeat head CTshowed enlarge-
ment of the right subarachnoid hemorrhage
with significant midline shift and transtentorial
herniation. Neurosurgery and neurology ser-
vices were consulted. Both services believed
that the patient was brain dead by their clinical
examination. Mr. K.’s daughter, who was an
employee of the hospital’s microbiology labora-
tory, arrived in the emergency room. The emer-
gency room attending physician and the
consulting attending neurologist jointly ex-
plained the patient’s condition to the daughter.
She expressed understanding of his condition
and requested that the patient be kept on life
support until she was able to notify her brother
in Korea. To comply with her request, the deci-
sion was made to hold off on performing confir-
matory tests for brain death, and the patient was
admitted to the intensive care unit (ICU). On
his admission note, the attending neurologist
wrote that the patient was ‘‘clinically brain
dead’’ but required a repeat examination. The
palliative care service was consulted to provide
support to the family.
The daughter informed the palliative care
team that her brother was the ultimate deci-
sion maker because he was the eldest son. He
did not have a visa to come to the United
States from Korea. She believed that the soon-
est he could arrive would be in two weeks. The
social worker then spoke to the son by phone
via an interpreter; he stated that he was unwill-
ing to make any decisions until he was able to
see the patient himself.
On the evening of the patient’s admission
(12 hours after arrival to the emergency
room), the daughter told the palliative care
team that she no longer believed the patient
was dead. She saw an active heart rhythm on
his EKG monitor, and other patients in the
ICU on ventilators appeared to her to be in
a similar condition to her father. She asked
the palliative care team, ‘‘Why would the neu-
rosurgery resident ask me to make my father
a DNR if he is already dead?’’ On further ques-
tioning, she admitted to the palliative care
team that her father previously stated that he
did not want to be kept alive on artificial life
support but did not complete a written ad-
vance directive. To help the family’s accep-
tance of brain death, the palliative care
service recommended proceeding with an
Vol. 40 No. 2 August 2010 Ethical Challenges in Brain Death
apnea test. The apnea test was performed and
was consistent with brain death. The ICU
nurse and respiratory therapist explained the
results of the test to the daughter. These expla-
nations led to a paradoxical response from the
daughter; she became more convinced that
the patient was dependent on the ventilator
to keep him alive. She informed the palliative
medicine attending that she would have ac-
cepted the patient’s death had the physicians
turned off the ventilator in the emergency
room. However, the more care she saw the pa-
tient receive in the ICU, the more convinced
she became that the patient was alive. She
asked, ‘‘Why would the staff keep providing
care if the patient is dead?’’
In accordance with hospital policy, the re-
gional organ procurement agency was notified
in the emergency room when devastating brain
injury was diagnosed. Because the daughter al-
ready had been informed about the patient’s
brain death, she initially agreed to meet with
the organ procurement personnel, but by the
time they met with her in the ICU hours later,
she declined to donate.
Risks of Harm
This case challenges the common practice
of allowing families time to accept the concept
of brain death. Although most families benefit
from the additional time and interaction with
staff, this case illustrates the potential risk
that families may become less accepting of
the idea as time goes along. Paradoxically,
the more education and support the staff pro-
vided, the less accepting the family became.
This case illustrates that acceptance does not
occur just with time but with the recognition
that the patient is not going to recover from
their brain injury. However, the daughter in
this case had a valid point: The actions of treat-
ing health professionals were inconsistent with
their words. As this family became more en-
trenched in their disbelief of brain death, their
risk of complicated grief may have increased.
Thus, the potential harm to the family may
have increased in proportion to the time the
patient spent on the ventilator. This harm
may be even greater in families who disagree
or argue among themselves. Clinicians must
weigh the benefit of giving families time to
come, say their good-byes, and achieve closure
311
with the risk that more time may lead to a re-
duced likelihood they will come to that
closure.
By failing to formally declare the patient
brain dead in the emergency room, clinicians
missed the opportunity to help the family to
accept the patient’s death. This failure of accep-
tance resulted in a missed window of oppor-
tunity for the family to consent to organ
donation. In addition to the benefit of such
organ donation to other patients and families,
organ donation also could have benefited the
family of Mr. T. K.7 His family could have gained
the knowledge that good came out of this trag-
edy and that their father’s legacy could live on
in others. Such knowledge often helps families
in their grief and bereavement process.8
Maintaining the patient on life support was
a violation of the patient’s previously ex-
pressed wishes. Although a compromise of
his autonomy may be acceptable if there was
benefit to the family, the risk-benefit analysis
changed as the harm to the family became
more apparent with time. Respect for auton-
omy is less of a consideration in other cultures
than in the American culture.9 Other nations
and cultures do not have a tradition of individ-
ualism. Rather, they tend to make decisions as
a family, clan, or village.10 In this case, the fam-
ily had little difficulty ignoring the patient’s
prior expressed wish not to be on life support.
Although adhering to cultural norms and
allowing the family to participate in decision
making may benefit the family, this benefit
has to be balanced against the harm of not re-
specting the patient’s wishes and with the po-
tential harm of delaying or worsening the
family’s grieving process.
Like autonomy, brain death is a concept that
is not as accepted in most other cultures. Use
of cross-cultural communication techniques
recommended in the literature was ineffective
and gave the family a false sense that they had
a say in how and when the patient would die.11
These techniques, which are designed for
discussions about the care of patients while
they are alive, harmed the family in delaying
their acceptance of the patient’s death. Thus,
cross-cultural issues were dominant in this
case.
Finally, the risk of financial harm increases
with time and resource consumption. As will
be discussed below, the risk of denial of
312 Liao and Ito
payment by the patient’s insurance was high.
The family was at increasing risk of being left
with a large and expensive hospital bill.
Justice: Resource Utilization
The use of resources to maintain the body of
a brain dead patient becomes increasingly dif-
ficult to justify as more resources are con-
sumed. The utilization of an ICU bed could
potentially deprive or delay another patient
of needed ICU care. At the time of this case,
the hospital consistently struggled with a short-
age of ICU beds. The emergency room at a ma-
jor trauma center must close to trauma
patients when the ICU is full. Thus, the use
of an ICU bed for this patient ran the risk of
impacting the care of patients in the commu-
nity, including delaying care or increasing
risk of death, because patients have to be trans-
ferred to a trauma center that is farther away.
Utilization of resources for this patient also
increases health care costs. Regardless of who
directly pays for these costs, the overall health
care cost to society increases. Ultimately, we all
pay for this patient’s unnecessary care. Health
professionals, therefore, have an ethical duty
not to waste health care dollars. The time
and energy of health professionals also are lim-
ited and precious resources. The use of this re-
source is appropriate if the family benefits.
However, the consumption of this resource
led to more apparent harm to the family rather
than good, even if this harm was not apparent
to the family. Depriving other patients and
families of the attention of these health profes-
sionals becomes increasingly difficult to justify.
Legal Implications
The new California statute regarding the
removal of life support after brain death, as
mentioned in the introduction, defines a ‘‘rea-
sonably brief period’’ as an amount of time af-
forded to gather family or next of kin at the
patient’s bedside but does not define a set
time frame. It does provide that ‘‘in determin-
ing what is reasonable, a hospital shall consider
the needs of other patients and prospective pa-
tients in urgent need of care.’’ The law, however,
does not discuss who pays for the hospital costs
during this period after brain death is con-
firmed. If the family wishes to keep the patient
on the ventilator or in the ICU, should the
Vol. 40 No. 2 August 2010
family pay or does the hospital pass on the cost
to other patients and families? Third-party
payers are unlikely to be willing to pay for the
care of a dead patient.
This case also illustrates a risk of insurance
fraud in delaying the declaration of brain death.
Does the documentation of ‘‘nearly dead’’ or
‘‘almost dead’’ in order for the insurance com-
pany to pay for a patient’s care constitute insur-
ance fraud? Unfortunately, physicians have lost
the trust of insurance companies. Medical liter-
ature reports that physicians have been willing
to lie to insurance payers to get coverage for
care they believe the patient needs.12 Confirma-
tory tests often can be performed within hours,
although they are not required by state law or
hospital policy. Similarly, the second clinical ex-
amination also can be performed within hours.
When is delaying the second examination or the
ordering or performing of confirmatory tests
appropriate to give the family more time?
As the cutoff time for the next billing day
approaches, the possibility of insurance fraud
places a realistic time frame on both discus-
sions with the family and decision making.
To avoid insurance fraud, a conclusion must
be achieved in a time frame that is generally
counted in hours. Although a case has been re-
ported in the literature of a patient deemed to
be brain dead but kept on a ventilator for days,
the duration of the ventilator support was crit-
icized as inappropriately long.13,14
This case occurred before the implementa-
tion of the new California state law, which
may have reduced the tension between the
hospital staff and the family. This new law
would have allowed the hospital staff, includ-
ing the palliative care team, to temporally sep-
arate the issue of brain death declaration from
the removal of ventilator support. It would
have provided time to involve risk manage-
ment during the day instead of trying to ad-
dress these issues late in the night. On its
quality improvement review of this case, the
palliative care team determined that involve-
ment of risk management earlier in the course
of the events was the most important take-
home point for future similar cases.
Resolution of the Case
The patient was pronounced brain dead on
the night of admission, and the ventilator was
Vol. 40 No. 2 August 2010 Ethical Challenges in Brain Death
disconnected. Because of the family’s anger, the
respiratory therapist, nursing staff, and house
staff were all fearful of physically removing the
ventilator although they supported the
withdrawal. The palliative medicine attending
physician, therefore, personally turned off the
ventilator and removed the endotracheal tube.
During the removal process, the patient’s daugh-
ter cried, ‘‘You’re killing my dad,’’ over and over.
The next morning, the family filed a complaint
with the hospital’s administration. This com-
plaint was then referred to the risk management
office. After the risk management office dis-
cussed the case with the palliative care service,
the risk management director arranged bereave-
ment care for the family at the recommendation
of the palliative medicine attending.
Conclusion
Continuing artificial life support for patients
who are brain dead may produce harm to pa-
tients, families, and others involved. Declara-
tion of brain death should not be delayed to
wait for families or to justify hospital care. In-
stead, appropriate family care should be pro-
vided after the death declaration. This care
may include continuing artificial life support
for the patient, as in the spirit of the new
California law. Health professionals need to
weigh the clinical, financial, and legal implica-
tions when removing the ventilator of a brain
dead patient without the assent or acceptance
of the patient’s family. In such cases, risk man-
agement should be involved early in the course
of the decision.
References
1. The President’s Council on Bioethics. Contro-
versies in the determination of death: a white paper
by the President’s Council on Bioethics. Avail-
able from http://www.scribd.com/doc/12336356/
Presidents-Council-of-Bioethics-Controversies-in-the-
Determination-of-Death. Accessed June 29, 2010.
313
2. Bernat JL. Medical futility: definition, determi-
nation, and disputes in critical care. Neurocrit
Care 2005;2:198e205.
3. Burt RA. The medical futility debate: patient
choice, physician obligation, and end-of-life care.
J Palliat Med 2004;5:249e254.
4. Gampel E. Does professional autonomy protect
medical futility judgments? Bioethics 2006;20:
92e104.
5. American Academy of Neurology. Practice param-
eters: determining brain death in adults. Available
from http://www.aan.com/professionals/practice/
guidelines/pda/Brain_death_adults.pdf. Accessed
February 6, 2010.
6. California Assembly Bill No. 2565. Section 1254.4
Health and Safety Code. Available from http://info.
sen.ca.gov/pub/07-08/bill/asm/ab_2551-2600/ab_
2565_bill_20080702_amended_sen_v94.pdf. Accessed
June 29, 2010.
7. MacDonald ME, Liben S, Carnevale FA,
Cohen SR. Signs of life and signs of death: brain
death and other mixed messages at the end of
life. J Child Health Care 2008;12:92e105.
8. Kelso CM, Lyckholm LJ, Coyne PJ, Smith TJ.
Palliative care consultation in the process of organ
donation after cardiac death. J Palliat Med 2007;
10:118e126.
9. Blackhall LJ, Murphy ST, Frank G, Michel V,
Azen S. Ethnicity and attitudes toward patient au-
tonomy. JAMA 1995;274:820e825.
10. Ngo-Metzger Q, Phillips RS, McCarthy EP.
Ethnic disparities in hospice use among
Asian-American and Pacific Islander patients dying
with cancer. J Am Geriatr Soc 2008;56:139e144.
11. Kagawa-Singer M, Blackhall LJ. Negotiating
cross-cultural issues at the end of life: ‘‘You got to
go where he lives’’. JAMA 2001;286:2993e3001.
12. Wynia MK, Cummins DS, VanGeest JB,
Wilson IB. Physician manipulation of reimburse-
ment rules for patients: between a rock and a hard
place. JAMA 2000;283:1858e1865.
13. Inwald D, Jakobovits I, Petros A. Brain stem
death: managing care when accepted medical
guidelines and religious beliefs are in conflict.
BMJ 2000;320:1266e1268.
14. Fisher M, Raper RF. Commentary: delay in stop-
ping treatment can become unreasonable and un-
fair. BMJ 2000;320:1268.