Family Caregivers on the Front Lines

The literature is replete with discussions about the prevalence of pain, its undertreatment, and barriers to adequate pain management. Less attention had been given to factors affecting pain management in the home, although a growing literature explores issues particular to this topic. These issues include knowledge and attitudes about cancer pain and its management among patient and family members, stress in family caregivers and community nurses, management of the technical aspects of pain in the home, and communication. Recognition of the “responsibility without adequate training or power” phenomenon that nurses commonly experience in the home care setting has been an impetus for the development of training programs for home care nurses in pain management. Many families experience the same phenomenon. Family caregivers are expected to play a primary role in cancer pain relief across all stages of the disease and yet are frequently given little or no training on how to do so. Structured pain education programs have been shown to result in positive outcomes for patients and their family caregivers.

Understanding the factors that influence adequacy of pain management in the home has become increasingly important in the face of the current trend toward shorter inpatient hospital stays, earlier hospital discharges, and the expectation that extremely sick patients will be managed at home. This trend is likely to continue in light of health care reform and new systems of care such as the medical home. Family members, with community nursing support, are on the front line of home pain management.

Barriers to Pain Management in the Home

Generally speaking, the home environment offers substantial benefits to the individual with cancer and pain, but home care also can result in intense burdens for family caregivers resulting in compromised care. Home care is best viewed as a family experience with the recognition that every aspect of care provided to the patient will affect family caregivers.

At the same time, barriers have been described that hinder pain management in the home, including patient and family fears of addiction, failure to report pain, and limited access to care. The intense demands on family caregiving at home, especially in the provision of 24-hour physical caregiving, is well described. Less attention has been placed on the emotional burden to the family of assuming responsibility for the patient’s well-being in the home. In addition, little has been written about the care of cancer patients with pain who are discharged home to a high-risk, drug-abuse environment. Encompassing a relatively small group of individuals, their needs can be great. However, with careful planning and close monitoring, safe pain management at home can be achieved for most people with cancer.

An early small descriptive study (trial of 10), which investigated the experience of managing pain at home from the perspectives of the patient, the primary family caregiver, and the home-care nurse, encapsulated many of the important areas that affect pain management in the home. Areas of decision making and conflict mainly centered around the use of medications. Patients were preoccupied with decisions about which pain medication to take and how much. Negative side effects and meaning in regard to these medications contributed to conflicts in patients’ minds about whether they were doing the “right thing” in taking the pain medication.

Nearly all the patients assumed that their pain would increase with impending death. Patients’ decisions about how to live with the pain included considerations about the impact of their actions and words on family members and health care professionals. Sometimes these factors led the patient to deny the pain. Similarly, the decisions and conflicts that arose most frequently for family caregivers were related to pain medication, making decisions about which pill to give, and when to give the medication. Exacerbating these decisions were concerns related to overdosing, adverse side effects, and addiction. Sometimes the family member admitted to withholding information from the patient or the nurse in an attempt to benefit the patient in some way. For example, depending on the decision-making process of the family member, more or less medication might be given. Other studies conducted on knowledge and beliefs about pain management in cancer patients and their families found that although patients and families share similar beliefs about pain, family members tend to have a higher degree of emotional distress associated with observing pain in their loved ones.

Barriers to Pain Management in the Home

Generally speaking, the home environment offers substantial benefits to the individual with cancer and pain, but home care also can result in intense burdens for family caregivers resulting in compromised care. Home care is best viewed as a family experience with the recognition that every aspect of care provided to the patient will affect family caregivers.

At the same time, barriers have been described that hinder pain management in the home, including patient and family fears of addiction, failure to report pain, and limited access to care. The intense demands on family caregiving at home, especially in the provision of 24-hour physical caregiving, is well described. Less attention has been placed on the emotional burden to the family of assuming responsibility for the patient’s well-being in the home. In addition, little has been written about the care of cancer patients with pain who are discharged home to a high-risk, drug-abuse environment. Encompassing a relatively small group of individuals, their needs can be great. However, with careful planning and close monitoring, safe pain management at home can be achieved for most people with cancer.

An early small descriptive study (trial of 10), which investigated the experience of managing pain at home from the perspectives of the patient, the primary family caregiver, and the home-care nurse, encapsulated many of the important areas that affect pain management in the home. Areas of decision making and conflict mainly centered around the use of medications. Patients were preoccupied with decisions about which pain medication to take and how much. Negative side effects and meaning in regard to these medications contributed to conflicts in patients’ minds about whether they were doing the “right thing” in taking the pain medication.

Nearly all the patients assumed that their pain would increase with impending death. Patients’ decisions about how to live with the pain included considerations about the impact of their actions and words on family members and health care professionals. Sometimes these factors led the patient to deny the pain. Similarly, the decisions and conflicts that arose most frequently for family caregivers were related to pain medication, making decisions about which pill to give, and when to give the medication. Exacerbating these decisions were concerns related to overdosing, adverse side effects, and addiction. Sometimes the family member admitted to withholding information from the patient or the nurse in an attempt to benefit the patient in some way. For example, depending on the decision-making process of the family member, more or less medication might be given. Other studies conducted on knowledge and beliefs about pain management in cancer patients and their families found that although patients and families share similar beliefs about pain, family members tend to have a higher degree of emotional distress associated with observing pain in their loved ones.

Pain Medication Administration and Adherence in the Home

For family caregivers of cancer patients, effective medication management involves a complex set of activities, which include filling the prescription, safely storing the pain medication, organizing and dispensing medication as needed or on a fixed dosing schedule, monitoring effectiveness and adverse events, and communicating about those symptoms with the oncology team.

Nonadherence, defined as the inability of patients to take medications as prescribed, is a major concern in pain management. Nonadherence is usually multifactorial and may lead to undertreatment or even potentially dangerous medication errors. Caregivers’ lack of experience with opioids, fears of addiction, and fears about managing pain medications in the home setting can lead to under-reporting of pain and undermedication. This was the case in a study involving 89 days of oncology inpatients and their primary caregivers. In this study, patient-caregiver ratings of pain were noncongruent, with patients reporting higher pain and poorer performance status levels. The authors concluded that patients were reluctant to report their pain to family members for fear of causing them distress. As a consequence, 45% of family caregivers underestimated their loved ones’ pain, whereas 55% overestimated it. In another study involving caregivers of patients with advanced cancer, caregiver distress led to hypervigilance by caregivers, exaggeration of the patient’s pain experience by caregivers, and over-reporting of the patient’s pain experience. These studies suggest that caregivers’ burden and distress can influence symptom management in patients.

The Role of Caregivers in the Assessment of Pain

Effective pain management is dependent on an accurate assessment. When the patient is being cared for at home, the physician frequently relies on second- or third-hand information supplied by the patient, family, or home care nurse on the severity of the pain, adequacy of relief, presence of side effects, and associated toxicity. Correct interpretation of the patient’s and caregiver’s report of pain is essential. According to Elliot and colleagues, and suggested by the preceding studies, three dimensions constitute a patient’s pain experience: cognitive factors (including attitudes, beliefs, and knowledge), sensory or physical input, and affective or emotional experience. Elliot and coworkers found that although patients and families reported parallel perceptions of the patient’s cancer pain, family members consistently assessed the patient’s level of pain somewhat higher than the patient. This suggested to them the effect of observing rather than experiencing the pain. In addition, Ward and colleagues reported that patients with increased concerns were less likely to use analgesics adequately. These studies, as well as others, document that family caregivers are often as affected by pain as the patient, and sometimes more so.

There are important implications here for evaluating the efficacy of a pain management strategy, if the assessment is largely dependent on a family member’s report. The report of poorly controlled pain may indicate the family member’s distress as well as that of the patient. Areas of family distress include fatigue, lack of knowledge about pain management, concern about addiction, concern about harming the patient, and an overwhelming feeling of responsibility. Family concerns as well as patient distress must be addressed if pain is to be adequately managed. There is a close relationship between the two.

In a comprehensive review of 129 quantitative research studies on family caregivers and palliative care in the home setting, family caregivers reported providing extensive help to dying relatives in the areas of medication and symptom management. Other studies have reported an inverse relationship between the health and function of the cancer patient and the amount of caregiver burden with caregiver strain, depression, and anxiety reaching its peak as the patient enters the terminal phase.

In another comprehensive review of more than 100 qualitative studies on family caregiving at home at the end of life, the general consensus across studies was that caregivers reported a lack of preparation, knowledge, and skills in symptom, pain, and medication management, especially with the technical aspects of medication administration. Recommendations included teaching family caregivers about the practical aspects of care at the end of life and making sure caregivers were routinely provided with general information about the nature and course of the patient’s disease. Yet caregiving is not uniform and the needs of caregivers of cancer patients are neither identical nor static. Caregiver burden and comfort with home pain management regimens must be assessed and reassessed over time.

A national survey of 1677 family caregivers, including caregivers of cancer patients, documented the complexity of medical management in the home setting. More than 90% of caregivers ordered, picked up, and paid for the patient’s medication. Caregivers dispensed pills, prepared pillboxes, or gave medication in the form of injections, inhalers, eye and eardrops, and infusion pumps. Although caregivers found medication-related tasks to be inconvenient, repetitive, and time consuming, fewer than half had received counseling or training in the area of medication management .

The difficulties that patients and family caregivers commonly encounter when trying to put a pain management regimen into place at home are summarized in Box 78.1 . They illustrate that patients and family caregivers need ongoing support and help with problem solving in order to optimize their pain management regimen. Most caregivers rely on nurses for information related to medications.

Nondrug Interventions Used by Patients for Pain Management in the Home

In addition to the numerous and sometimes overwhelming responsibilities related to the pharmacologic management of pain in the home, patients and family caregivers use many nondrug strategies for pain relief. Although some of these techniques are taught in the hospital setting, they are seldom reinforced by the medical team once the patient is discharged home. Nondrug interventions include both physical and cognitive approaches. Physical approaches include interventions such as heat, cold, and massage. Cognitive strategies include a variety of relaxation techniques, imagery, meditation, and prayer. These nondrug strategies, especially those that are a “fit” with the patient’s values and belief system, can be enormously helpful in not only enhancing pain relief but also in helping the individual to regain a sense of control.

Planning for Home Pain Management: Transition from Hospital to Home

Hospitalization and discharge episodes are notorious for interrupting the pain regimens of cancer patients as a new treatment team is involved or as new medications are added or withdrawn in light of new medical conditions or side effects. Common to all groups, however, is the need for basic education on cancer pain management with the individualized home pain management regimen clearly written out in a language that the patient and family can understand; a pain management plan that is financially feasible for the patient; verification that prescribed analgesics are available in the community; confirmation that the patient and family are secure with the discharge and follow-up plans; and assurance that the patient is not discharged (if at all possible) within 24 hours of a change in opioid drug or route of administration ( Box 78.2 ).

Classification of Patients Into Groups Helps Individualize and Organize Care

To facilitate discharge planning for patients with cancer-related pain and ease the transition from hospital to home, it is useful to classify patients into different groups, depending on specific needs and risk factors ( Table 78.1 ). This is important because discharge-planning needs and home care needs are specific to each group.

Group 1 comprises patients who have stable pain, and are, for example, using an oral, transmucosal, rectal, or transdermal route of opioid administration. These patients may or may not be pursuing a course of curative or life-prolonging therapy. The patient is usually followed on an outpatient basis with ongoing prescriptions written by the primary physician or nurse practitioner. The patient is instructed to contact the primary physician or nurse practitioner for any change in the quality, severity, or site of the pain and the occurrence of adverse side effects. Prior to the patient’s discharge home, it is important that the community pharmacy be contacted to make sure that it has the necessary opioid in stock or is willing to obtain it. It is good practice for the physician or pain management nurse to initiate contact with the patient within the first week of discharge to confirm that pain is adequately controlled and that the patient and family feel confident with the pain management approach. This initial telephone contact also confirms that pain management is a priority and the patient’s pain will continue to be monitored closely with resources readily available even though care is now on an ambulatory basis. The cost of medication on an outpatient basis can be a significant barrier for patients without a prescription plan . The ability of a patient to both pay for and obtain the outpatient analgesic prescription must be established prior to discharge home. Often the patient does not volunteer this information unless specifically asked for it. The social worker can be very helpful in this area. Several pharmaceutical companies have specific patient “hardship” programs. A social worker can again be very helpful in evaluating a patient’s eligibility for these programs and accessing these resources.

If a patient’s pain escalates once at home, it is crucial to explore with the patient or family caregiver whether the pain medication is being taken as prescribed. It is not unusual that a pain management regimen is not adhered to once an individual goes home, for the variety of reasons described earlier. The reasons for nonadherence need to be discussed in an open and frank manner. Tailoring a pain management regimen that fits in with the patient’s and family caregiver’s values, goals, and capabilities is essential if symptoms are to be controlled at home.

Group 2 consists of patients who require a parenteral route of drug administration to control their pain. Although the majority of patients do well on the oral or transdermal route of opioid administration, some will require ongoing administration through a parenteral route. The most common indications for a parenteral infusion in the cancer population are bowel obstruction or malabsorption, severe stomatitis, intractable nausea and vomiting, and dysphagia. A parenteral opioid infusion also is considered for patients with rapidly escalating and unstable pain or those with frequent and severe episodes of breakthrough pain. In these situations, the use of patient-controlled analgesia in combination with the continuous parenteral infusion helps ensure more effective pain relief . Finally, an opioid parenteral infusion may be considered if the oral route produces severe gastrointestinal side effects. Similar to the patients in group 1, these patients may or may not be pursuing a course of curative or life-prolonging therapy. They are not imminently dying and do not meet hospice criteria for long-term follow-up. Discharge planning is more complex than for those in group 1 and requires a team approach, with good communication between the hospital and the community. In some institutions, a specific discharge planner, usually a nurse, plays an important role in organizing the home care plan once the needs have been identified by the team. The discharge planner facilitates referral to home care agencies (e.g., a home infusion company) and is able to identify insurance constraints or availability of drug constraints so that alternative avenues may be sought to provide the patient and family with the care that they need.

It is rarely feasible to maintain peripheral intravenous access for continuous infusion in the home. Continuous infusions are usually only considered in patients who have an indwelling central venous port or other long-term central venous device. Placement of one of these devices is occasionally necessary prior to the patient’s discharge home in order to accommodate a large volume of fluid—for example, in the case of a fentanyl infusion. In most cases, however, a continuous subcutaneous infusion can accomplish the goals of therapy without the need for intravenous access.

The degree of support that is needed to maintain a parenteral infusion at home varies widely, depending on the patient and family characteristics. Specific educational issues need to be addressed with all patients and caregivers. These include knowledge of drug effects and side effects; the use of rescue doses; operation of the infusion device, specifically turning the pump on and off and changing the battery; and knowledge of how to change the cassette or infusion bag. A minority of patients/families never achieve a comfort level in changing the infusion cassette or bag. In those instances, the infusion home care nurse will usually make the necessary changes. It is mandatory that all patients and their families who are receiving a parenteral infusion at home have a 24-hour resource person available to them to troubleshoot the system ( Box 78.3 ). The most common error encountered in a continuous infusion at home using a computerized pump is incorrect programming—for example, failure to reprogram the pump when the concentration of the opioid in the cassette or bag is changed. This leads to an inadvertent overdosing or underdosing of the patient. Such errors can be largely circumvented through the use of a flowchart kept in the patient’s home. Errors will be picked up rapidly if the patient is being adequately monitored. The first sign of an incorrectly programmed pump might be increasing pain or the occurrence of side effects such as increasing sedation or nausea and vomiting.

Box 78.3

Complaints of Increased Pain

• 1.
  

  Evaluate in context of the disease and psychological state.

  
  
• 2.
  

  Check needle site, pump setting, cassette/bag content, and concentration.

  
  
• 3.
  

  Evaluate the use and amount of “rescue doses.”

Complaints of Increased Side Effects (e.g., sedation)

• 1.
  

  Evaluate in context of the disease and psychological state.

  
  
• 2.
  

  Check cassette/bag for drug and concentration.

  
  
• 3.
  

  Check pump setting and correlate it with cassette/bag content.

  
  
• 4.
  

  Evaluate use and amount of “rescue doses.”

  
  
• 5.
  

  Evaluate other drugs being used.

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