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, Im
scared. Im not afraid of the end, of him dying. I guess
Im tired, and I realize the amount of care hes 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
1 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 and Miaskowski et al 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 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 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.
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. 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
1. [5,15,16] These concerns must be addressed to ensure
successful implementation of any pain treatment at home.
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. 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 cant 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 cant help her, and
that I cant do what Im supposed to do. Im used to
fixing things. And when I cant fix her pain, I feel very, very disabled.
The content of the structured pain education program is summarized in Table
2. 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.
1. Ferrell BR: The impact of pain on quality of life: A decade of
research. Nurs Clin North Am 30(4):609-624, 1995.
2. Ferrell BR, Dow KH, Grant M: Measurement of the quality of life in
cancer survivors. Qual Life Res 4:523-531, 1995.
3. Ferrell BR, Ferrell BA, Rhiner M, et al: Family factors
influencing cancer pain management. Postgrad Med J 67(Suppl.
4. Ferrell BR, Grant M, Borneman T, et al: Family caregiving in
cancer pain management. J Palliat Med, in press.
5. Ferrell BR, Grant M, Chan J, et al: The impact of cancer pain
education on family caregivers of elderly patients. Oncol Nurs Forum
6. Lobchuk MM, Kristjanson L, Degner L, et al: Perceptions of symptom
distress in lung cancer patients: I. Congruence between patients and
primary family caregivers. J Pain Symptom Manage 14(3):136-146, 1997.
7. Miaskowski C, Zimmer EF, Barrett KM, et al: Differences in
patients and family caregivers perceptions of the pain
experience influence patient and caregiver outcomes. Pain
8. Watt-Watson J, Graydon J: Impact of surgery on head and neck
cancer patients and their caregivers. Nurs Clin North Am
9. Ward SE, Berry PE, Misiewicz H: Concerns about analgesics among
patients and family caregivers in a hospice setting. Res Nurs Health
10. Beck-Friis B, Strang P: The family in hospital-based home care
with special reference to terminally ill cancer patients. J Palliat
Care 9(1):5-13, 1995.
11. Berry PE, Ward SE: Barriers to pain management in hospice: A
study of family caregivers. Hospice J 10(4):19-33, 1995.
12. Faller H, Lang H, Schilling S: Emotional distress and hope in
lung cancer patients, as perceived by patients, relatives,
physicians, nurses and interviewers. Psychooncology 41:21-31, 1995.
13. Hull MM: Coping strategies of family caregivers in hospice home
care. Oncol Forum Nurs 19(8):1179-1187, 1992.
14. Ferrell BR, Cronin-Nash C, Warfield C: The role of
patient-controlled analgesia in the management of cancer pain. J Pain
Symptom Manage 7:149-154, 1992.
15. Ferrell BR, Ferrell BA, Ahn C, et al: Pain management for elderly
patients with cancer at home. Cancer 74:2139-2146, 1994.
16. Ferrell BR, Grant MM, Rhiner M: Home care: Maintaining quality of
life for patient and family. Oncology 6(2):136-140, 1992.
17. Ferrell BR, Juarez G, Borneman, et al: Home care. J Pain Symptom
Manage (submitted for publication).
18. Ferrell BR, Griffith H: Cost issues related to pain management:
Report from the Cancer Pain Panel of the Agency for Health Care
Policy and Research. J Pain Symptom Manage 9(4):221-234, 1994.
19. Stommel M, Given CW, Given BA: The cost of cancer home care to
families. Cancer 71(5):1867-1874, 1993.
20. Ferrell BR, Schaffner M: Pharmacoeconomics and medical outcomes
in pain management. Sem Anesth 16(2):152-159, 1997.
21. Drickson GP: Ethical dilemmas in home care of chronically ill
elderly persons. Home Health Nurs 6(6):19-23, 1996.
22. Ferrell BR, Dean GE: Ethical issues in pain management at home. J
Palliat Care 10(3):67-72, 1994.
23. Ferrell BR, Johnston-Taylor E, Grant M, et al: Pain management at
home: Struggle, comfort and mission. Cancer Nurs 16(3):169-178, 1993.
24. Goldman A: Home care of the dying child. J Palliat Care
25. Johnston-Taylor E, Ferrell BR, Grant M, et al: Managing cancer
pain at home: The decisions and ethical conflicts of patients, family
caregivers, and homecare nurses. Oncol Nurs Forum 20(6):919-927, 1993.
26. Nijboer C, Tempelaar R, Sanderman R, et al: Cancer and
caregiving: The impact on the caregivers health. Psychooncology
27. Stajduhar KI, Davies B: Palliative care at home: Reflections on
HIV/AIDS family caregiving experiences. J Palliat Care 14(2):14-22, 1998.
28. Steele RG, Fitch MI: Coping strategies of family caregivers of
home hospice patients with cancer. Oncol Nurs Forum 23(6):955-960, 1996.
29. Stetz KM, Brown MA: Taking care: Caregiving to persons with
cancer and AIDS. Cancer Nurs 20(1):12-22, 1997.