How to Help Families Better Assess Patients' Pain
by Norman A. Desbiens, M.D.
| Geriatric Times |
 |
May/June 2001 |
|
Vol. II |
|
Issue 3 |
Research conducted over the last 20 years has been remarkably consistent in
demonstrating that pain is a major problem for patients of all ages in all
health care venues (Abbott et al., 1992; Desbiens et al., 1996; Donovan et al.,
1987; Kroenke et al., 1990). Pain is particularly troubling for the elderly in
hospitals and nursing homes, where it has been widely ignored (Desbiens et al.,
1997; Won et al., 1999). Most Americans die in hospitals and nursing homes; and
although control of pain and suffering is a traditional goal of all health care
(Cassel, 1982), pain is unnecessarily troubling for these patients, even in
their final death throes (Baker et al., 2000).
Most authorities believe that by using medications that are readily
available, the American health care system has the means at hand to decrease
the pain and suffering of patients in hospitals and nursing homes. What has
been lacking is sensitivity to the issue and determination to solve it. The
failure of our health care system to address pain and suffering seriously is a
major ethical issue for our times (Desbiens and Wu, 2000). The public and the
legal profession are quickly becoming aware of the failure of medicine to pay
adequate attention to its traditional nemeses -- pain and suffering.
Now accreditation agencies have joined the battle against pain and are
providing strong motivation for health care institutions to do so as well. The
Joint Commission on Accreditation of Healthcare Organizations (JCAHO) now
requires hospitals and long-term care facilities to demonstrate comprehensive
pain education, monitoring and treatment programs (JCAHO, 2001b). No segment of
these institutions will be exempt from these requirements. JCAHO is requiring
facilities to conceptualize pain as a separate coexisting condition that
demands attention separate from the medical condition or conditions that might
be causing the pain. In other words, attention to medical problems is not
enough; pain must be addressed separately and comprehensively.
Standard RI.1.2.8 of the JCAHO handbook (JCAHO, 2001a) states: "Patients
have the right to appropriate assessment and management of pain." It goes on to
explain its intent:
Pain can be a common part of the patient experience; unrelieved
pain has adverse physical and psychological effects. The patient's right to
pain management is respected and supported. The organization plans, supports,
and coordinates activities and resources to assure the pain of all individuals
is recognized and addressed appropriately. This includes initial assessment and
regular reassessment of pain; education of relevant providers in pain
assessment and management; education of patients, and families, when
appropriate, regarding their roles in managing pain as well as the potential
limitations and side effects of pain treatments; and after considering
personal, cultural, spiritual and/or ethnic beliefs, communicating to patients
and families that pain management is an important part of care.
JCAHO recognizes the pivotal role of families in pain control.
Pain is always subjective. The International Association for the
Study of Pain (1994) emphasized: Many people report pain in the absence of
tissue damage or any likely pathophysiological cause; usually this happens for
psychological reasons. There is usually no way to distinguish their experience
from that due to tissue damage if we take the subjective report. If they regard
their experience as pain and if they report it in the same ways as pain caused
by tissue damage, it should be accepted as pain.
Nonetheless, subjective estimation presents particular challenges for a
geriatric population that has a high prevalence of aphasia or dementing
illnesses, which may inhibit patients' ability to communicate or quantify pain
using verbal, numerical or visual analogue scales. In these situations, family
members may be the best sources of information about patients' pain. In other
situations, even for patients who are cognitively and communicatively intact,
family caregivers may feel that they can better estimate patients' pain than
patients themselves. These occurrences can present particular challenges for
health care providers who will then appreciate the value of standardized
scales.
How good are family members at estimating patients' pain? Few studies have
addressed this matter. However, the Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatment (SUPPORT), a study of patient
and family experience with serious illness conducted in five major teaching
hospitals in the last decade, gave insight into the ability of family members
to assess the presence and level of patient pain by conducting similar
interviews about pain with patients and families at similar times during
hospitalization (The SUPPORT Investigators, 1995).
This study showed that family members were quite accurate in estimating when
patients had pain; family members reported that patients were in pain when
patients reported pain (sensitivity) nearly 80% of the time and responded that
patients were not in pain when patients denied pain (specificity) nearly 70% of
the time (Desbiens and Mueller-Rizner, 2000). However, family members were only
50% accurate in estimating the exact level of pain, overestimating it one time
in six and underestimating it one time in 10. Family members were more accurate
in detecting higher levels of pain, in which case accuracy increased to nearly
90%. Family members' education, age, gender and time to travel from their home
to the patients' homes were not associated with accuracy in assessing pain.
Since these family members were surrogate decision-makers for the patients, we
surmise that in estimating patients' pain, caring is more important than exact
relationship.
What can health care institutions do to train family members to better
assess patients' pain? The JCAHO requirements provide institutions with a
timely opportunity to include families when educating patients about pain and
its assessment. Patients, caregivers and family members may all have
misconceptions about pain and its assessment and treatment. Every effort should
be taken to include family members and caregivers in pain education sessions
and to teach them to use standardized pain assessment scales. Family members
can observe nursing staff as they assess patients' pain. In turn, nursing staff
should observe family members as they measure patients' pain and record
findings. Similar to hospital pain treatment protocols, family members could be
instructed in analgesic use if a certain pain level is surpassed. These
sessions could help family members calibrate standardized patient reports of
pain with behaviors (such as restlessness, agitation or withdrawal) that might
be associated with pain.
What about patients who are aphasic? Pain scales may still be useful in some
of these patients, and institutions should have available a variety of word,
numerical and faces scales to determine which are easier for patients to use.
Patients who cannot communicate at all -- those with profound aphasia, advanced
dementia or delirium -- present a particularly difficult challenge. In these
cases, professional staff may have to rely solely on behavioral cues. A family
member who has previously correlated behaviors with standardized pain
assessments or who has correlated improvement in behavior with response to
analgesics may be particularly valuable. Lacking this information, a
therapeutic trial of an analgesic may be informative for both the caregiver and
the health care professional.
How can institutions benefit from educating family members to better assess
patients' pain? As previously mentioned, family members who can assess pain in
a standardized fashion and correlate pain with behaviors can provide valuable
information to the nursing staff at the time of admission. Knowing that family
members and nursing staff are on the same team will enhance rapport and mutual
respect. Improved assessment should lead to prompt treatment of pain, which, in
addition to relieving human suffering, may decrease other complications of
hospitalization and long-term care (Davis and Walsh, 2000).
Including caregivers in educational and treatment plans will go a long way
to demonstrate to JCAHO that an institution is seriously interested in pain
control. What better image for a hospital or nursing home to project than one
of unrelenting effort to prevent needless pain and suffering? This image will
be immediately apparent to extended family and friends and will ultimately
redound to the benefit of caregivers and health care institutions.
Dr. Desbiens is professor and chair of medicine at the
University of Tennessee College of Medicine-Chattanooga Unit and medical
director of Alexian Brothers Community Services' Program of All-Inclusive Care
for the Elderly.
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