When patients lack capacity, physicians look to family and
friends to step in and provide consent for treatment on behalf of the
patient. These surrogates, whether they
were appointed by the patient as their health care agent or become health care
surrogates by default under state law based on their relationship to the
patient, have the right to receive information related to the care and
treatment of the patient and have the corresponding responsibility to make
health care decisions for the patient based on either the patient’s previously
expressed wishes or her best interests.
What they don’t have, however, is the right to control and direct every minute
aspect of the patient’s care in the hospital.
It would take several blog posts to discuss the conflicts that occur
between surrogates and health care providers because of this (such as DNR
orders, barriers to discharge, and demands for certain medications, to name a
few), but perhaps the most concerning example of surrogate over-reach is the
issue of inadequate pain management.
The use of pain medication can be difficult for both
patients and providers, especially with the rate of opioid abuse
in this country. Patients and their
families are often afraid of the possibility of addiction, while physicians are
reticent to prescribe narcotics for fear of misuse. Whether or not a patient is a “drug-seeker”
is a common question that arises when physicians are deciding what to
prescribe. However, in the context of
terminal illnesses – particularly at the very end of the illness – the shift in
focus from curative to palliative care highlights the need for sufficient pain
control in the face of nearly intractable pain.
It is in this context that denial of pain medication, or poor pain
management, is most clearly an ethical issue.
I have often heard complaints from health care providers
about how surrogates have refused to consent to pain medications, or insist
that physicians give lower doses than medically appropriate. When I ask how the provider responded to such
requests, all too often the answer is, “I followed their direction.” We are so used to turning to surrogates for
consent for every treatment and procedure, but is it really within the
surrogate’s authority to consent to or refuse pain medication? Assuming
there is no advance directive from the patient opposing adequate pain
medication, do surrogates have the right to refuse it? More importantly, is it ethical for
physicians to withhold adequate pain medication at the direction of a surrogate
despite obvious signs of pain in the patient?
While respect for autonomy is a bedrock principle in our
society, and we would certainly honor the informed refusal of pain medication
by a patient with capacity, this respect for autonomy does not mean we necessarily
honor the directives of the patient’s surrogate to the same extent as we would
the patient herself when it comes to pain control. Without explicit direction from the patient,
certain basic assumptions are made about what the patient would want: namely,
relief of pain and suffering. While
questions of withdrawal of life-sustaining treatment or palliative surgery may
properly be left to the surrogate, the provision of pain medication is assumed
as part of basic care for the patient in accordance with the principle of
nonmaleficence. We have an obligation to
do no harm to patients, and to the extent possible, to relieve suffering. While the side effects of opioids should
certainly be considered and discussed with the patient’s family, particularly
as it may affect the patient’s awareness or respiration, if other palliative
approaches are not sufficient to address the patient’s pain, these side effects
should not preclude the use of pain medication.
Interventions aimed at pain relief should be given in the overall best
interests of the patient, considering the risks and benefits. Especially at the end of life, providing
comfort to the patient should be of utmost importance, even if the surrogate
objects. When pain relief is an ethical
issue, it is not an issue for the surrogate alone to decide.