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In the course of an illness, patients and health care agents will need to decide
which treatments they want to pursue. The right to decide has been well acknowledged
by the courts and affirmed by ethics through the recognition of the autonomy
principle. The patient or agent may refuse a treatment or request the cessation
of therapy. Treatment decisions are made according to the goals of care, which
vary with the progression of the disease. At times, cure will be the ultimate
goal; however, in advanced disease, avoidance of premature death, maintenance
or improvement in function, relief of suffering, maintenance of quality of life,
and help to maintain control or promote a good death will become more realistic
goals. It is not easy to determine the appropriate goals. When is it time for
palliation? Did we reach the end-of-life phase? Is there still a place for active
treatment?
Patients and family will need guidance in their decision-making process. Information
by the medical team will help to determine what can be done. Patients and agents
will decide, once adequately informed, what their preferences are, and set their
limits of care according to their personal values and goals. Other members of
the team or family and friends can be helpful. Good communication among the
participants involved can help to resolve very difficult decisions.
Among the decisions that may arise in advanced disease are the following:
Each of these issues is controversial. Although much discussion has taken place,
there is no clear consensus.
When treatment is considered to be ineffective, disproportionate or of no value
to the patient's quality of life, it may be withdrawn or withheld. Withdrawal
of treatment is defined as the ending of treatment that is medically futile
in promoting an eventual cure or a possible control of the disease. Withholding
of a treatment occurs when this type of treatment is not provided at all. Both
practices refer to the proportionality of treatment under the circumstances:
it is no longer reasonable or beneficial to fight the disease with aggressive
medical interventions, since it cannot be controlled. They are both applicable
in the context of life-sustaining therapies, in contrast to lifesaving therapies.
The mere prolongation of life-sustaining treatments is not perceived as a justifiable
goal. By withdrawing or withholding a therapy, one stops or never starts a treatment
that is no longer effective in achieving its goal, thus no longer resisting
the process of death-in-progress, previously delayed by artificial means.
Although withholding and withdrawal of therapies have been described mainly
in situations related to technical interventions (ventilator, hemodialysis),
they can also be applied by extension to chemotherapy, artificial hydration
and nutrition as long as the aim of these therapies is to prolong life beyond
expectation, to delay death.
If it is generally accepted that when a treatment is futile (has no benefits)
it should not be offered or given, the difficulty is to define futility. Futility
has been variously defined as "a treatment that does not fulfill its purpose
or offers almost no benefits, a treatment with highly improbable or no real
chance of achieving a desirable end." What type of benefits should be included
in the definition (medical, quality of life), what chances of success are acceptable,
remain open to discussion. Advances in medicine, by defining the probability
of success of certain therapies, help to better define the quantitative aspect
of futility. This represents only one of the multifaceted aspects of this controversial
concept. An evaluation in the broader context of decision-making is needed to
reach an adequate decision.
Treatment withholding or withdrawing when a treatment is hopeless or futile
is generally accepted by both the medical and the legal community. At times,
health care professionals may be unable to comply with such a demand. They might
have to transfer the care of their patients to other willing providers, consult
their institution's ethics committee, or look to the courts for guidance. Dealing
with these difficult issues requires a great deal of sensitivity and consideration
for the values of all parties involved. In any case, it is important to discuss
the goals of care and to make sure that the plan of care is well understood
in order to avoid any misinterpretation. In that regard, withholding and withdrawal
of treatment need to be clearly distinguished from physician-assisted suicide
and euthanasia.
The impressive technique of resuscitation introduced in the 60’s for
victims of sudden cardiac or respiratory arrest has become a common practice
in hospitalized patients, regardless of the underlying disease. Unless a DNR
order is specified, patients who suffer a cardiopulmonary arrest will be "coded."
DNR is a direct application of the right of the patient to refuse an intervention.
Although well-acknowledged, many questions regarding the current use of DNR
discussions and orders remain.
Because resuscitation is often perceived as a question of "life and death"
with dramatic consequences, it often tends to be poorly discussed or interpreted,
not addressed, or addressed too late. DNR orders have been developed to encourage
open discussion and patient participation in their care. The discussion focuses
on a specific issue: whether to resuscitate in the case of a cardiac or respiratory
arrest. As in the case of any procedure or treatment, a DNR decision needs to
be informed [explanations of the procedure, benefits, and harms (chances of
success or complications)], and consented (signed). Written documentation is
required, mostly in the form of a signed document by the patient or the surrogate/proxy.
It can be revoked.
CPR and Advanced Illness
In contrast to popular belief, resuscitation is not an easy procedure or one
with a high success rate. It is now known that the survival rate of CPR is about
15% under the best circumstances (good health status and CPR started early after
the arrest). The survival rate is related to the underlying disease. Almost
no patient with advanced cancer survives to leave the hospital: It is almost
never successful in patients with chronic debilitating illnesses (1%-4%).
CPR and Level of Care
The DNR order is only one element of the care plan. DNR does not preclude the
administration of other therapies. A patient with a DNR order can still continue
intravenous fluids, antibiotics or any other indicated treatments. In each case,
adequate information on the various options should be discussed with the patient
or decision-maker. The discussion about resuscitation should be placed in the
broader context of life-prolonging therapies.
Withholding or withdrawing artificial hydration or nutrition is difficult to
address with the patient or the family because nutrition has such a high symbolic
value (it seems to mean caring, and withdrawal is seen as starvation), and because
of numerous misperceptions. Withholding nutrition can be perceived as neglect,
abandonment or hastening death. An open discussion about the advantages and
side effects of artificial nutrition will help to correct the misconceptions
and reassure families in their decision process. The discourse is rarely neutral
and should take into account emotions, passions, religious beliefs, and the
overall goals of care.
Artificial hydration and nutrition have been considered as treatment by the
courts and, as such, are governed by the same legal and ethical medical principles
as the withholding and withdrawal of other treatments. In this way, information
about nutrition and hydration should be part of a larger discussion about life-prolonging
therapies.
As with any treatment, nutrition and hydration have indications and contraindications.
The difficulty is to recognize the appropriateness of these therapies. In advanced
cancer or other debilitating illnesses, some patients benefit subjectively from
artificial nutrition or hydration and others do not. Improvement in quality
of life or survival has not been proven. In certain cases, it becomes clearly
detrimental since it can contribute to increased swelling, increased pulmonary
or other secretions, and worsen the shortness of breath. Each case is unique
and deserves an individual approach.
Good palliative medicine can alleviate symptoms for most patients with advanced
disease. At the end of life, sedation has been suggested as a means to relieve
difficult symptoms not responding to sound palliative care.
Terminal sedation is defined as the action of deliberately inducing unconsciousness
without deliberately causing death, in order to relieve intractable symptoms.
The treatment is considered for a "refractory symptom," when all other
means have failed and a patient is believed to be imminently dying. The prevalence
of terminal sedation is unknown; a literature survey shows a frequency ranging
from 5% to 52%.
The use of this technique is not without controversy. When is a symptom considered
"refractory" (a symptom that cannot be otherwise satisfactorily controlled)?
Does this term only apply to physical symptoms or include existential and psychological
distress? How imminent should death be? What increases in the dosage of analgesics
are consistent with an intent to relieve pain? The acceptability of sedation
to terminally ill patients, physicians, families, other health care providers
and society has not been demonstrated.
If there is no consensus on the indications for sedation, there is also none
concerning the pharmacologic agents to use to induce sedation. Benzodiazepines
and barbiturates are the most widely used drugs but the list also includes opioids,
neuroleptics, and other psychotropic drugs, or a combination of these agents.
Whatever the agent selected, dose titration to achieve relief is required before
continuing maintenance therapy at the lowest dosage possible. Sedation is mostly
continuous but can be intermittent in certain circumstances.
The ethical justification for sedation is based on the principle of double
effect. It applies to situations where a desirable effect (good) is linked to
an undesirable effect (bad). To be morally acceptable, such an action must comply
with the following requirements:
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the treatment proposed must be beneficial or at least neutral |
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only the good effect should be intended and must be achieved directly |
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the beneficial result must outweigh the untoward outcome |
The principle's application relies on one's personal and professional integrity
and intention.
Sedation is typically not a goal of opioid therapy. It should be considered
an exceptional therapeutic measure with specific indications. Considering the
importance of its consequences and potential for misunderstandings, sedation
should be a multidisciplinary decision based on an open discussion with the
patient or patient's proxy. Support to family and friends is needed at all times.
The use of sedation should be continually reviewed and documented in the medical
record.
Sedation, as a mean to relieve intractable symptoms, possibly to the point
of hastening death, has been acknowledged as justifiable by various medical
societies, bioethics, and more recently, by the United States Supreme Court.
To be legally acceptable, sedation should be carried out in a manner consistent
with the intent of relieving suffering. The action should reflect the purpose.
Sedation in the imminently dying recognizes the right of patients to good palliative
care.
Although some have considered sedation in the imminently dying as a form of
euthanasia "in disguise," the two are quite different. They differ
in their intent: death is the unintended, although foreseen result in sedation,
as opposed to the intended result in PAS and euthanasia. They also differ in
action: a sedative dose is not a killing dose. PAS and euthanasia imply recognition
not only of the right to be relieved of suffering, but also of the right to
die.
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