Patient and Family Caregiver Perspectives

Introduction

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 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[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 1. [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 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.