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Patient and Family Caregiver Perspectives

Patient and Family Caregiver Perspectives

ABSTRACT: The introduction of any new analgesic agent or delivery system is often focused on efficacy of the agent or on considerations of use by health care professionals. Introduction of novel pain technologies should also consider the ultimate recipients of the treatments, ie, patients and family caregivers at home. This article reviews four frequently ignored issues in the integration of new pain treatments. These are 1) recognizing that pain is managed by patients and family caregivers at home; 2) acknowledging patient and family caregivers’ knowledge and beliefs about pain; 3) recognizing cost considerations; and 4) identifying common ethical dilemmas in managing pain at home. Attention to these considerations will ensure optimum pain relief and support of patients and their family caregivers. [ONCOLOGY 13(Suppl 2):15-19, 1999]


A discussion of managing pain in advanced
cancer immediately brings to mind the difficult challenges faced by
health care providers in their efforts to control pain using multiple
methods. However, a discussion on this topic is incomplete without
recognition of those most affected by advanced cancer pain, ie, the
patients and their family caregivers at home. Advances in pain
management, including use of technologies like neuraxial infusion,
are important contributions to what has been recognized as a social
mandate for improved pain relief. The introduction or dissemination
of such advances in pain relief will only be successful if the
factors influencing patients and family caregivers in their
24-hour-a-day task of pain management are included.

The shift toward managed care over the past decade and other changes
in health care delivery have resulted in a shift in the burden of
chronic illness care to patients and family caregivers. These changes
have made the home environment the primary setting of cancer care and
often reluctant family members responsible for complex care needs.
One area of cancer patient care causing great concern to family
members is the comfort of their loved ones. This concern was
expressed recently by the spouse of a patient being discharged home
for terminal care. Crying, she said,

“I see him comfortable and relaxed here, and I know that he
is going to be sent home because the nurse was making the
arrangements. She asked me why I was crying and I said, ‘I’m
scared. I’m not afraid of the end, of him dying. I guess
I’m tired, and I realize the amount of care he’s going to
need at home.’”

The impact of pain has been described in terms of its effect on
overall quality of life. The quality of life model depicted in Figure
evolved over the past 15 years of research at the City of Hope
National Medical Center. It describes pain not as a single symptom,
but rather captures its influence on overall quality of life.[1-5]
Pain profoundly influences physical, psychological, social, and
spiritual well being. Cancer pain has been well documented as having
a profound influence on the quality of life of both the patient
experiencing it as well as the family caregivers who observe it and
assume responsibility for controlling it.[3-5]

The understanding of pain in advanced disease has evolved largely as
a result of the influence of hospice care. As a primarily home-based
service, researchers in hospice have described issues in managing
pain at home and brought recognition to the role of family caregivers
in pain management. Lobchuk et al[6] and Miaskowski et al[7] have
conducted studies of the knowledge of and beliefs about pain in
cancer patients and their family members. These studies demonstrated
that patients and families have similar knowledge about pain but that
family caregivers tend to have greater emotional distress associated
with managing pain in their loved ones.

Researchers have explored the involvement of patients and family
caregivers in outpatient and home care settings in recent literature
with very consistent findings. Watt-Watson and Graydon[8] studied the
experience of patients with head and neck cancer, focusing on the
continuity in pain management from postsurgery to discharge home.

Ward and colleagues[9] compared 35 patient and family caregiver dyads
who were seen in the inpatient hospice setting. These studies and
other literature have documented that family caregivers assume
primary responsibility for pain relief despite very limited support
and a limited understanding of pain management. The role of family
caregivers becomes even more intense with advanced disease.[10-13]

Thus, recognition of the changes in health care delivery in addition
to the findings of recent studies clearly document the importance of
recognizing issues in pain management at home. Any advance in
analgesia or pain technologies must consider the home environment as
the ultimate site of the pain experience and its treatment, and must
incorporate patients and family caregivers as those who will provide
for ongoing decisions and care. New pain technologies often evolve
from well-controlled studies conducted in inpatient settings, and
successful translation of these treatments to routine care requires
an evaluation of the home environment with support provided to
patients and families as they assume responsibility for care.

Knowledge and Beliefs About Pain

Optimum use of any pain treatment requires that patients and
caregivers have adequate knowledge of basic pain principles and that
they overcome misconceptions or inappropriate beliefs. Studies have
acknowledged that patients and family caregivers often have
inappropriate understanding and unrealistic beliefs about therapies
for pain such as fear of addiction and fear of respiratory
depression, and may tend to use small doses of analgesics or weaker
drugs in order to save stronger medications or larger doses for later
use if pain progresses.

Studies have documented that pain education must be extended to
family caregivers so as to prepare them for the decision-making
involved in chronic pain management, including determining the (1)
choice of medication, (2) correct doses, and (3) frequency with which
analgesics are given.

An example of the importance of patient and family knowledge of pain
and beliefs about successful use of pain technology has been observed
with the use of patient-controlled analgesia at home. Home care
nurses have observed instances where patient-controlled analgesia
pumps have been implemented at home with the expectation by health
care providers that pain management would improve.[14] However, these
patients are frequently found not only to have continued uncontrolled
pain, but also heightened anxiety. The burden for family caregivers
also increases because the technology was implemented without
appropriate patient and family educational support.

The use of a patient-controlled analgesia pump must be accompanied by
an explanation of basic pain principles such as routine dosing,
management of breakthrough pain, and balancing pain relief with
control of other side effects. Pain management principles that seem
basic to health care providers are monumental tasks for patients and
families who often have no prior understanding of these concepts.

Some of the common concerns of cancer patients and family caregivers
based on previous studies at the City of Hope are summarized in Table
. [5,15,16] These concerns must be addressed to ensure
successful implementation of any pain treatment at home.

Pain Education Programs

Recognition of the importance of overcoming misconceptions as well as
providing basic pain management knowledge has led to the creation of
pain education programs for patients. One such program, developed and
tested by City of Hope investigators from 1989 to the present,
involves three components with focus on pain assessment,
pharmacologic interventions, and nondrug interventions. The
structured teaching of this program, which was evaluated in 81
elderly cancer patients and their family caregivers at home,
positively influenced knowledge and beliefs about pain as well as
their use of pain medications and nondrug methods for managing pain.[5,15]

From 1994 to 1998, the researchers extended their work to include
translating the pain education program for use by home care nurses.
Findings of this recently completed research have documented that the
pain education program can be implemented by clinicians in home
care.[17] These studies have also documented the importance of
adequate preparation of home care providers in pain management so
that they can educate the patient.

In our research, we found that providing families with pain education
can move them from a sense of helplessness to a state of helpfulness.
The sense of helplessness and frustration was recently described by a
husband who was caring for his wife with advanced cancer. He said,

“When she has pain that I can’t control, I feel that I
should be able to give her something to stop it. And when that
happens, I just feel disabled. I feel like I can’t help her, and
that I can’t do what I’m supposed to do. I’m used to
fixing things. And when I can’t fix her pain, I feel very, very disabled.”

The content of the structured pain education program is summarized in Table
. One of the findings of the previously described studies has
been that there are unique issues in advanced disease and that
patients and family caregivers require additional knowledge and
support to sustain pain relief as the disease progresses.


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