The ethics of care requires a delicate balance between the conventional practice
of medicine and the wishes of the patient, appreciating that each human situation
is unique. Not only should treatment options and likely outcomes be considered,
but also patient values, hopes and beliefs. Patients and families must be properly
informed to make appropriate treatment decisions and help reset the goals of
care at all stages of the illness.
Pain, Ethics, and Palliative Sedation
Every palliative case presents its own ethical dimensions and dilemmas. The
following case illustrates the diverse ethical and legal issues embedded in
a common palliative care situation.
||Mr. W. was a 50-year-old construction worker, separated from his wife
(though still legally married) and with a teenage child. He had a history
of laryngeal carcinoma diagnosed one year before. He had a total laryngectomy
and received radiation therapy, but the disease recurred. He was admitted
to the hospital for what turned out to be a final 7 weeks of hospitalization.
His admission was initially prompted by increased shortness of breath and
facial swelling following chemotherapy. His hospital stay was complicated
by a left carotid erosion for which he had a bedside carotid ligation. He
spent 2 weeks in the medical intensive care unit (MICU) for stabilization
and treatment of pneumonia. Mr. W. had elected the "Do-Not-Resuscitate"
His hospital course was marked by increased pain, facial swelling, periodic
seizures, a second pneumonia and progressive weakness. At all times, he
was bed bound and artificially fed. His pain was relatively well controlled
but the facial swelling was uncontrollable. Communication was possible to
some extent through hand signals. Decisions were made after lengthy explanations
to the patient and his wife, his designated health care agent.
In the final weeks of life, Mr. W.'s condition further deteriorated. His
ability to communicate markedly decreased. In response to his enormous suffering,
palliative care staff recommended sedation for Mr. W. Although his wife
supported the decision, several nurses and house officers were concerned
that such an intervention would go beyond the boundaries of appropriate
symptom management. Mr. W.'s feeding tube was withdrawn, in accord with
symptom control, comfort measures and the patient's wishes.
The patient, completely unresponsive in the last 5 days of his life, died
In this complex case, many questions can be raised
||What are the ethical issues?
||What constitutes an ethical problem?
||Are ethical questions different from legal questions?
||How do we define consent?
||Are advance directives necessary?
||What does it mean to be DNR (do not resuscitate)?
||Is withholding and withdrawal of treatment identical? Are they ever acceptable?
||Can we ever stop artificial nutrition and hydration?
||Is sedation an option at the end of life? How does sedation differ from
physician-assisted suicide (PAS) or euthanasia?
This case suggests many more questions than answers. Although the following overview
might simplify the understanding of the multiple issues embedded in a clinical
case, one should remember that ethics cannot be equated with an "easy recipe"
for solving problems. Ethics is a complex domain and needs ongoing learning, discussion
and reflection, essential to the practice of good medicine.
Since ethical decisions are sometimes complex and difficult, in most major hospitals
an ethics committee is available to guide the medical team in the decision-making
process. The modalities of access vary according to the facility. Most ethics
committees are accessible to families, patients and medical teams.
What Is Ethics?
Ethics is a generic term for different ways to examine moral life. Clinical ethics
is a "practical discipline that provides a structural approach to decision-making
that can assist health professionals to identify, analyze, and resolve ethical
issues in clinical medicine" (Jonsen AR, Siegler M, Winsdale WJ. Clinical
Ethics. 3rd ed. McGraw-Hill, NY, 1992). The ethics of a case arises out of the
facts and values embedded in the case itself. Ethics in palliative care is a matter
of "practical reasoning" about individual patients. Although there are
many approaches proposed by ethicists for the analysis and resolution of difficult
situations, the most commonly used are organized around principles, such as respect
for autonomy, beneficence, non-maleficence and justice. The principles are balanced
and weighed in any particular ethical situation. Sometimes they come into conflict
and create an ethical dilemma.
What Are the Basic Ethical Principles?
RESPECT FOR AUTONOMY recognizes the right and ability of an individual
to decide for himself or herself based on his or her own values, beliefs and life
span. This implies that the patient may choose a treatment that might differ from
the advised course of care. The patient's decision should be informed and well-considered,
reflecting his/her values. It is acceptable, for example, that a patient refuse
certain therapy according to his own religious beliefs. Many factors interfere
with the expression and appreciation of the patient's preferences: compromised
competence of the patient, stress of illness, comprehension difficulty, etc. Respect
for autonomy implies truth telling and exchange of accurate information about
status, goals of care, options and expectations.
BENEFICENCE requires that the physician prevent or remove harm,
while doing or promoting good. It is the most commonly used principle in the application
of care. It implies that the health care team should do positive acts in maximizing
the benefits of treatment. Examples include: delivering effective and beneficial
treatments for pain or other symptoms, providing sensitive support, and assisting
patients and families in any way possible.
NON-MALEFICENCE supposes that "one ought not to inflict
harm deliberately." Violation of this concept may include offering information
in an insensitive way, providing inappropriate treatment of pain or other symptoms,
continuing aggressive treatment not suitable to the patient's condition, providing
unwanted sedation, or withholding or withdrawing treatment.
JUSTICE relates to fairness in the application of care. It implies
that patients receive care to which they are entitled medically and legally. Justice
can be translated into "give to each equally" or "to each according
to need" or to "each his due." Different theories of justice debate
what is "due," "equally," or "priority." Organ transplantation,
selection in the emergency room or admission to the inpatient or outpatient hospice
unit are applications of this principle. Who should have priority? The principle
of justice implies a consideration for a common good and societal considerations.
How Law Differs from Ethics
In the administration of care, one cannot ignore the different legal requirements
relevant to each situation. Although some cases might be defensible under ethical
principles, they might not be permissible under legal provisions. Law is defined
as minimal ethics, in the sense that it is based on the values of a society. It
is also the reflection of a societal consensus on particular issues. It varies
from society to society, from state to state. In the U.S., law is divided into
two systems: federal (across the states) and state (within the state). It can
be made by:
||Judges (common law)
|| Example: SupremeCourt of the United States
recognition for the right to refuse medical
||Legislatures (statutory law)
|| Example: Uniform Definition of Death Act
||Executive agencies (regulatory law)
|| Example: Regulations for Protection of Human Subjects of Research
Most end-of-life issues fall under common law (case by case decided by the tribunals,
such as consent/withholding or withdrawal of treatment) or statutory law (different
state law, e.g., physician-assisted suicide/do-not-resuscitate law).
Legal provisions impose limits on decisions that might be ethically sound but
nevertheless risky. They provide a framework to guide certain decisions or practices.
This framework is defined in terms of requirements that need to be fulfilled in
order to avoid liability.