Pain Management at the End of Life and Home Care for the Terminally Ill Patient

Introduction

The end stages of life bring a host of challenging symptoms and causes of suffering that may have accumulated with chronic, progressive, life-limiting diseases. The symptoms of pain, dyspnea, fatigue, and loss of mobility accompany emotional states, such as depression, anxiety, and a sense of uselessness. Of the many symptoms experienced by those at the end of life, pain is one of the most common and most feared. Pain is often undiagnosed and undertreated and can undermine the quality of life and interfere with physical functioning and social interactions. Uncontrolled severe pain is strongly associated with heightened psychological distress and can lead to a desire for hastened death.

Improving the quality of life and decreasing undesirable symptoms are the hallmarks of palliative, hospice, and end of life care. Although overlap exists between these models of care, there is a distinction in that palliative care aims to manage and decrease symptom burden because of disease progression of comorbid illness, whereas hospice care is focused on the care and comfort of a patient that is in imminent death or dying. The American College of Physicians defines the end of life period as “a phase of life when someone is living with an illness that will worsen and eventually cause death. It is not limited to the short period when the patient is moribound.” This challenges providers to think about the management of pain at the end of life as a chronic symptom as many of these patients will spend significant time in this phase of their life.

Pain associated with terminal illness and end of life is an extremely stressful experience for both patient and family. The prevalence of pain is reported in up to 80% of patients and increases toward the end of life. Additionally, the assessment and management of pain are made more complex by the presence of other symptoms and dynamic changes associated with disease progression. Compared to cancer patients that die in a hospital, those who die at home have a higher quality of life scores, and their bereaved family members are at less risk for developing psychiatric illness. The majority of patients and families prefer to die at home, but there is a minority that prefers to die in the hospital or has no preference. Vidal et al. suggest that preference for dying in the hospital may be attributed to previous failed attempts at home care, uncontrolled symptoms, or caregiver burden. The experience of pain at the end of life involves the management of multiple symptoms by family and friends, which predominantly occurs as a home experience that has potential for improvement.

Pain associated with the end of life and terminal illness is complex and must be viewed within a cluster of symptoms that need to be monitored and managed by the caregiver, which will also require guidance and support from the healthcare team. The successful care of a patient in the final stages of a terminal illness at home is dependent on the awareness and provision of basic and specialized interventions to ensure patient comfort and prevent prolonged grief in surviving loved ones. Careful discharge planning followed by regular assessment and reassessment can facilitate effective pain management and support for the patient at home and minimize pain “emergencies.” Effective communication between the primary physician, advanced practice nurse, home care nurse, social worker, and caregiver, as well as ready access to the point person among these professionals, is essential for the success of the home care plan. Input from consulting physicians, such as pain medicine, palliative care, and psychiatry, must also be incorporated in the treatment plan ( Box 82.1 ). A system of ongoing monitoring and support for the patient and caregiver needs to be in place to ensure the effectiveness of pain relief measures and early identification of caregiver burden and unmet needs.

BOX 82.1Multi-disciplinary Healthcare Members for End of Life Care

Primary Members	Consulting Members
Primary care physician Advanced practice nurse Home healthcare nurse Social worker Patient Patient’s caregiver Patient’s family members	Consulting physicians: pain medicine, palliative care, psychiatry Specialized nurse: bowel care, wound care, psychiatric care Chaplin

Prevalence and Causes of Pain at the End of Life

It is important to acknowledge and address the prevalence of pain in the end stage conditions that affect patients with advanced medical illnesses, such as cancer, heart disease, human immunodeficiency virus (HIV) disease, neurodegenerative diseases, and end stage renal, liver, and respiratory diseases ( Box 82.2 ). The management of these patients is complicated by the potential presence of multiple comorbid disorders that may each contribute differing components of the overall pain and require separate treatments. Although pain at the end of life is often attributed to terminal illness, common chronic pain conditions are more likely to contribute to discomfort. An observational study of over 4,700 older adult decedents found the prevalence of pain in the last month of life to be 60% in those with arthritis versus 26% in those without.

BOX 82.2Common Causes of Persistent Pain in Advanced Medical Illness

Cancer
Heart disease
Human immunodeficiency virus
Neurodegenerative diseases
End stage renal disease
Liver disease
Respiratory diseases
Diabetes
Low back pain
Osteoarthritis
Osteoporosis
Previous bone fractures
Rheumatoid arthritis
Shingles; postherpetic neuralgia
Trigeminal neuralgia
Peripheral vascular disease
Central or peripheral neuropathies

The prevalence of pain in the terminally ill varies by diagnosis and demographics. Approximately one-third of the people who are actively receiving treatment for cancer and two-thirds of those with advanced malignant disease experience pain. ^, Almost 75% of patients with advanced cancer who are admitted to the hospital report pain on admission. In a study of cancer patients who were very near the end of life, pain occurred in 54% and 34% at four weeks and one week prior to death, respectively. In an outpatient cancer center, an evaluation of over 5,000 patient encounters where the pain intensity scores were high (7–10 on a scale of 0–10) demonstrated that 29% of these patients were hospitalized within 30 days of those visits. In another study of more than 13,000 cancer patients in United States nursing homes, an average of 30% of the patients reported daily pain. In those patients, pain varied according to age, sex, race, marital status, physical function, depression, and cognitive status.

In patients admitted to palliative care units, pain is often the dominant symptom, along with fatigue and dyspnea. Until recently, it was widely believed that patients dying from non-malignant disease did not have high levels of pain. However, it is now known that patients dying from cardiac failure, chronic obstructive pulmonary disease (COPD), end stage renal disease, and other end stage diseases suffer similar levels of pain to those found in patients with malignant disease. Comparing advanced cancer patients to those with symptomatic congestive heart failure (CHF), it is now clear that the symptom burden is as great or greater in the latter. In a multi-center Veterans Administration (VA) study of CHF patients, it was noted that over 55% of them had pain (the majority of which rated their pain as moderate to severe), which was more common than the sensation of dyspnea.

An attempt has been made to characterize the pain experience of those with HIV disease because of the frequently for this disorder to be seen in palliative care settings. More than 56% of patients with HIV disease report pain, with the most common manifestations being headache, abdominal pain, chest pain, and neuropathies. There have been many reports of undertreatment of patients with HIV disease, including those patients with a history of addictive disease. Other groups at particular risk for undertreatment of pain include older adults, minorities, and women.

Assessing Pain and Suffering at the End of Life

Pain remains a subjective experience with physical, psychological, and social dimensions that are interdependent and intensified at the end of life. This multifaceted pain experience significantly impacts patients and families, especially when pain is not adequately controlled ( Figure 82.1 ). Assessment of pain generally includes a thorough history, physical examination, and psychosocial assessment. This serves as a comprehensive guide in the choice of diagnostic studies and the development of a pharmacologic and nonpharmacologic treatment plan. Various assessment tools range from simple unidimensional tools, such as pain rating scales, to complex multidimensional tools that address multiple facets, including physical and psychological symptoms, functional status, mental health, and social role. A systematic review of assessment tools related to palliative care found 152 different tools that primarily identified domains such as physical, psychiatric, social, and end of life care but few existing for spiritual, cultural, and legal domains.

Figure 82.1Pain at the end of life has many interactive components, including physical, psychological, and social aspects. Pain that remains inadequately controlled can significantly affect the quality of life for a patient, caregiver, and family.

The use of self-report is the gold standard for pain assessment. Ideally, an assessment tool that is suitable for a patient’s ability to self-report should be utilized to engage the patient in the evaluation. Older patients or those that are medically frail or terminally ill have a higher incidence of cognitive impairment, hearing and visual deficits, and medication side effects than those in younger or healthier populations. This may complicate the assessment of pain and requires additional time to allow for effective communication. Speech should be clear and unhurried; words and questions should be rephrased to ensure they are understood. The patient should be allowed plenty of time to ask and respond to questions. Some assessment tools such as the Verbal Descriptor Scale (pain thermometer) are validated as self-report instruments for unidimensional pain intensity in patients with mild to moderate cognitive impairment. Many patients near the end of life cannot provide detailed descriptions of their pain character, intensity, or location. Particularly for patients with cognitive impairment, self-assessments may be a burden to complete and difficult to interpret. For patients who cannot self-report pain intensity and description, observational pain assessment tools have been developed to be used by healthcare providers and caregivers. Utilization of available assessment tools such as those listed in Table 82.1 may help in the appropriate assessment of pain even in patients with limited cognition and communication.

TABLE 82.1

Assessment Tools for Pain and Suffering at the End of Life

Pain Assessments	Examples
Self-report	Visual Analog Scale (VAS) Verbal Rating Scale (VRS) Numeric Rating Scale (NRS) Faces Pain Scale (FPS) Verbal Descriptor Scale – Pain Thermometer Pain Drawing
Observational	Abbey Pain Scale (patients with dementia, cognition, or communication issues) Doloplus-2 (elderly with communication problems) Pain Assessment in Advanced Dementia Scale (PAINAD) Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) Checklist of Nonverbal Pain Indicators (CNPI) Pain Assessment for Dementing Elderly (PADE) Clinical Utility of the CAN Pain Assessment Tool (CPAT)
Pain-related factors	Multidimensional Pain Inventory (MPI) Edmonton Symptom Assessment Scale (ESAS)
Reports from caregivers	Pain reports of changes in intensity, frequency, location, response to therapy Pain observations of facial grimacing, guarding, tearfulness, agitation

Terminally ill patients may complain of pain as a way of expressing other forms of suffering, distress, grieving, anxiety, or depression. Patient behavior suggestive of psychosocial or spiritual concerns require different interventions that will likely be more effective than analgesics. It is well established that attention and emotion influence pain processing and perception, and conversely, inadequately managed pain can lead to anxiety and depression. Therefore a comprehensive assessment is required to determine the optimal plan of care, as specific to the pain etiology as possible. The involvement of other disciplines (e.g. nursing, social work, psychology, psychiatry, and chaplaincy) can be very valuable in uncovering other sources of emotional or spiritual suffering that may be confusing the pain assessment. Another invaluable contributor to the assessment of the patient and an important part of the healthcare team will be the patient’s primary caregiver.

As increasing numbers of patients are choosing to be home for their end of life, family caregivers assume the majority of patient care. When the patient is being cared for at home, the physician frequently relies on second- or third-hand information supplied by the patient’s caregiver on the severity of the pain, adequacy of relief, presence of side effects, and associated toxicity. The correct interpretation of the patient’s and caregiver’s report of pain is essential since effective pain management is dependent on an accurate assessment. Three dimensions comprise a patient’s pain experience: cognitive factors (including attitudes, beliefs, and knowledge), sensory or physical input, and affective or emotional experience. Although patients and families report parallel perceptions of the patient’s cancer pain, family members consistently assess the patient’s level of pain somewhat higher than the patient. This suggests the effect of observing rather than experiencing the pain. Studies of concordance between caregiver and patient experiences primarily exist for cancer patients only. Engelberg et al. found higher concordance for observable experiences such as breathing and comfort and less concordance with subjective patient experiences such as anxiety and depression.

There are important implications for evaluating the efficacy of a pain management strategy if the assessment is largely dependent on a proxy reporter for the patient. The report of poorly controlled pain may be indicative of the family member’s distress and 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. ^, The family may interpret the patient’s symptoms through their individual concerns, whereas the patient may be able to cope with their symptoms anticipating their own end of life. Some 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.

Caregiver concerns and patient distress must be addressed if pain is to be adequately managed in the home as there is a close relationship between the two. Healthcare professionals who depend on caregiver reports in managing patient symptoms must keep in mind the possibility of disconcordant assessments and the trend toward overreporting by family members. Disconcordance between family and patient provides a clinical opportunity for discussion to optimize wellness and understanding of the dyad. Collaboration and communication between the patient, their caregiver, and their clinician are key components of end of life care and specifically for the management of a patient’s pain in the home.

Caregivers on the Front Line at the End of Life

The Role of Caregivers

The majority of patients worldwide wish to spend the end of their life at home surrounded by familiarity. The World Health Organization suggests that an increasing number of patients receiving palliative care at home is cost effective. Caregivers are often family members, but friends and paid aides can also fill this role. Caregivers provide comfort and support in assisting patients with activities of daily living, symptom management, and clinical tasks. Among the responsibilities of the caregiver, pain management has been rated one of the difficult tasks that create frustration and stress for the caregiver. Caregivers are expected to play a primary role in pain relief across all stages of the disease and are frequently given little or no training on how to do so. ^, ^, In a comprehensive review of 129 quantitative research studies on caregivers and palliative care in the home setting, caregivers reported providing extensive help to dying relatives in the areas of medication and symptom management.

Effective medical management of symptoms, especially pain at the end of life in the home, is a complex set of activities that becomes the responsibility of the caregiver and has the potential to decrease the patient’s pain as well as ease the burden on caregivers. Caregivers are responsible for ordering and filling, and paying for prescriptions. They are expected to safely store pain medications, and organize and dispense medications on a fixed dosing schedule or as needed based on their assessment of pain. They have to be skilled in administering medications in the form of injections, inhalers, and eye and ear drops. Also, they are responsible for monitoring infusions, medication quantities, medication effectiveness, and adverse events. Furthermore, they are responsible for communicating about medications and symptoms with the healthcare team. A comprehensive review of over 100 qualitative studies on 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. ^, From these studies, it can be concluded that most caregivers rely on nurses or other members of the healthcare team for information related to medications.

Case 1: Caregiver’s Role

Misconceptions, Challenges, and Barriers to Pain Management in the Home

Generally speaking, the home environment offers substantial benefits to the patient with a terminal illness, but home care also can result in intense burdens for caregivers resulting in compromised care. Surveys of healthcare providers’ perceived barriers to pain management in the home include symptom recognition, adherence to analgesic regimens, failure to report pain, and limited access to care. ^, Patients and nonprofessional caregivers reported fears related to addiction, analgesic side effects, and accelerating death. Additionally, religious and cultural beliefs about spiritual suffering can influence and at times contradict the foundation of hospice care, which recognizes each person’s “right to die pain-free and with dignity”. Understanding the barriers that are faced when treating pain in home care settings can lead professionals to better educate and counsel patients and their families. Because misunderstandings lead to undertreatment, all clinicians involved in the care of patients with advanced illness and pain must be able to differentiate and clearly explain to patients and their families the clinical conditions of tolerance, physical dependence, and the rarity of addiction related to opioid use at the end of life. It also is critically important to be aware that there is no established relationship between titration of opioid analgesics to affect pain relief and timing of death in palliative care or hospice settings. ^,

Concerns with pain management in the home have been categorized by Chi et al. into caregiver- and patient-centric issues. Caregivers’ functional limitations may include physical and psychological fatigue affecting their caretaking abilities. Caregivers may have misconceptions about opioid addiction or fears that pain medications cause hastening death. They also have fears associated with side effects of pain medications causing increased sedation, confusion, and constipation. This leads to under-reporting and potentially withholding treatment despite planned interventions. Physical and psychosocial demands of ongoing work, family, and financial responsibility can interfere with attention to patient care. Ineffective communication or undefined avenues of communication between the caregiver and the healthcare system have also been identified to cause delayed patient assistance. Caregivers report a lack of knowledge about prescribed medications, including a basic understanding of action, dosing, and side effects. This deficit causes confusion and difficult decisions regarding the choice and timing of medication administration for effective pain management. Some studies have estimated the incidence of non-adherence to pain medications to be as high as 24%–51%. Non-adherence to pain regimen may lead to undertreatment or even potentially dangerous medication errors. Caregiver’s organizational skill or the potential for multiple caregivers allows for issues in tracking, recording, and safe keeping of pain medications. Patient-centric issues that affect home pain management related to the patient’s inability to verbalize pain, their personal view of the quality of life, how they consider the impact of their actions on their caretakers, and the extent of their physical deterioration. The difficulties that patients and caregivers commonly encounter when trying to put a pain management regimen into place at home are summarized in Box 82.3 . They illustrate that patients and caregivers need ongoing support and help with problem-solving to optimize their pain management regimen.

BOX 82.3Home Care Challenges that Risk Poor Pain Control at the End of Life

Complex pain syndromes from comorbidities and advanced disease
Rapidly escalating opioid requirements and need for an alternative route of drug administration
Polypharmacy for multiple end of life symptoms
Impairments of memory, cognition, vision, or hearing
Fear of opioids because of addiction or side effects
Under-reported pain because of fear of caregiver burden or hospitalization
Physiological, psychological, and social fatigue on patient, family, or caregiver
Inadequacy of pain treatments, non-adherence to the regimen
Inaccessibility to prescriptions, resources, or healthcare team for changes or emergencies
Unfamiliarity with medication uses, administration
Caregiver functional limitations, organizational skills
History of drug abuse or high risk home environment

Martha is an 85-year-old woman whose ability to function independently has declined in the past five years. She has end stage renal disease and requires dialysis three times a week. Because of her severe fatigue and chronic non-cancer pain from debilitating osteoarthritis, she is functionally very limited. She also suffers from depression and anxiety. Her only surviving family, three adult children, all work outside of the home and cannot oversee her care during the weekday hours.

Besides her primary care physician and psychiatrist, she also sees a pain specialist and a renal specialist. In addition, she receives 20 h a week of home health care through her insurance provider. Her caregiver, Bridget, has been with her for two years and her responsibilities include taking Martha to her medical appointments, picking up Martha’s prescriptions and supplies, and setting up Martha’s weekly pillbox. Bridge also helps Martha with bathing and with household chores. Bridget also provides Martha with companionship and a sense of security, knowing her needs are being addressed. Martha’s adult children provide care in the evening hours and on weekends and see to it that Martha feels loved and supported.

Effects of Unrelieved Pain on the Patient and Caregiver

There is growing evidence that inadequate pain relief might hasten patient death, not only via the well-recognized morbid effects of increased physiologic stress, reduced mobility, increased proclivities toward pneumonia and thromboembolism, and increased work of breathing and myocardial oxygen requirements but also through immune suppression. Pain may lead to spiritual despair and significant decrease in emotional wellbeing because the individual’s quality of life is impaired. Home care is best viewed as a family experience with the recognition that every aspect of care provided to the patient will not only affect patients but also affect family caregivers. The intense demands on family caregiving at home, especially in the provision of 24 h physical caregiving, is well described. Less attention has been placed on the emotional burden to the family assuming responsibility for the patient’s well-being in the home.

Caregiving has been identified as a risk factor for mortality. This carries not only physical consequences but emotional, economic, and social implications. Caregivers retain difficult memories of loved ones’ uncontrolled pain and suffering. They may have enduring feelings of guilt for having given too much medication that facilitated death or frustration regarding the type of care received. These perceptions impact caregivers’ satisfaction with home care of their loved ones, the quality of their bereavement, and their ability to manage pain in the future.

Palliative care and hospice programs provide care for the combined unit of the patient and the caregiver. Understanding the factors that influence the 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. Addressing issues with patients and caregivers regarding knowledge and attitudes about the varied etiologies of pain and its management, the stress in caregivers and community nurses, managing the technical aspects of pain in the home, and communication will serve to support families and foster trusting relationships. When pain and other distressing symptoms are properly addressed, and advance directives are completed to guide the caregiver, quality scores for end of life care increase, costs and resource utilization decrease, and caregiver stress is diminished. The interdisciplinary healthcare team utilizing nurses, social workers, chaplains, physicians, volunteers, and others is imperative to provide education, counseling, reframing, and spiritual care to patients and families exploring the end of life care and barriers to pain relief in the home setting. The recognition that home caregiving and community nursing have necessitated responsibility without adequate training has been an impetus for improved communication and educational programs for pain management at home.

Recommendations for Positive Outcomes

Caregivers with community nursing support are on the front line of home pain management. Structured pain education programs have been shown to result in positive outcomes for patients and their caregivers. ^, Recommendations include teaching 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. Patients and caregivers should be asked whether they are concerned about addiction and tolerance (often described as becoming “used to” or “immune” to the drug). Caregivers should be educated on changes in patient behavior such as irritability or frustration that may be cues to underlying pain symptoms. They should also receive education on the symptoms of aberrant respirations, decreased food and water intake, diminished cognition, delirium, low urine output, and incontinence at the end of life phase for a patient who is actively dying.

Care providers have concerns about precipitating death with the use of opioids or benzodiazepines used aggressively during this phase of active dying. It has been established that patients have legal and ethical rights to symptom management during this time. It has been observed that patients live for longer periods when symptom-driven medications are delivered as compared to those without the medications. ^, The reason for this is unsettled, but physiologic-based theories have been published. The provider has a duty to address the ethical, legal, and physiologic rationale for medications with patients and caregivers in this situation.

Caregiving is not uniform, and the needs of patients at the end of life and the needs of their caregivers are neither identical nor static. Incorporating a pain log or diary to improve documentation of pain, pain management strategies, and their effects on pain relief can provide concrete evidence to help individualize strategies. Accurate documentation in this manner is even more essential when multiple caregivers are involved in the care of a patient. Caregiver burden and comfort with home pain management regimens must be assessed and reassessed. Essential drugs should be made available at home outside of outpatient healthcare hours to enable rapid symptom management and prevent unnecessary hospitalization. It is the professional and ethical responsibility of clinicians to focus on and attend to adequate pain relief for their patients and properly educate patients and their caregivers about analgesic therapies.

Planning for Home Pain Management

Transition From Hospital to Home

Transitioning patients with a terminal illness from the hospital to a home setting for the end of life care is a challenging task because of the complexities of coordination of care, the types of interventions, the inadequate management of refractory symptoms, and the lack of caregiver support. Patient care that has been entirely organized by healthcare professionals during the hospital stay without caregiver involvement may cause feelings of inadequate preparation or anxiety during the discharge process as the burden of care and decision making shifts primarily to a sole caregiver. In preparing the patient and their caregivers to go home, the focus should be on security, communication, and clarification of the pain management plan. A review of efficacious home care programs found that linkages with hospital and community services, multi-disciplinary team and holistic care model, and access to the end of life care expertise (including pain and symptom management) were associated with improved outcomes. The outcomes included quality of life, satisfaction with care, performance status, pain management, non-pain symptom management, supporting home deaths, and reduced healthcare costs. The components of the home care program reduced barriers within organizations, increase accountability, facilitate transitions, prevent symptom exacerbation, and avoid an unnecessary end of life hospitalization while providing overall improved quality of life and satisfaction.

Hospital to home transitions should begin with a review of the guidelines and resources provided by The Joint Commission’s foundations of safe and effective transitions of care to home and the National Patient’s Safety goals for home care. Transition to pain management in the home requires an individualized pain management plan that often benefits from early and recurring discussions of patient goals and values within family meetings with the use of “teach-back” to ensure understanding of the discharge plan. Patients and caregivers assuming responsibility for pain management may have a limited understanding of medical conditions and medications, low health literacy, and lack of confidence in self-care resulting in difficult transitions. Promotion of positive communication strategies between caregivers and staff, ensuring the adequacy of information in preparation for discharge, trying out the role of caregiver, and testing the home environment for barriers with short weekend discharges prior to definite discharges have all been some features of successful transitions to home care.

Assessment of the home care environment and identification of anticipatory needs and potential scenarios for patients that are terminally ill is an integral process to achieve sustainable and satisfactory transitions to home care and to decrease the risk of readmission. Repeated hospitalization and discharge episodes are notorious for interrupting the pain regimens of patients as new treatment teams become involved or new medications are added or withdrawn in light of new medical conditions or side effects. The pain management plan should be appropriate, complete, and clearly written out in a language that the patient and family can understand. Pharmacists can be an invaluable resource in helping with medication reconciliation, assessing routes of administration, reviewing prescriptions for completeness, evaluating for polypharmacy, and the need for non-comfort medications or duplicate therapies.

Medication and therapeutic interventions should be financially feasible for the patient, the availability of prescribed analgesics should be verified in the community, discharge and follow up plans should be confirmed with patient and family, and the patient should not be discharged (if at all possible) within 24 h of a change in opioid drug or route of administration ( Box 82.4 ). Availability and cost of outpatient medication can become a significant barrier for patients . The community pharmacy should be contacted to ensure the availability of prescribed opioid medications or willingness to obtain them. Prior to the patient’s discharge home, it is important to establish the ability of a patient to both pay for and obtain their outpatient analgesic prescription. Several pharmaceutical companies have specific patient “hardship” programs for assistance. A social worker can be a helpful resource in evaluating a patient’s eligibility for these programs and accessing such resources.

BOX 82.4Factors to Facilitate Hospital to Home Transition

Do Not Discharge a Patient

Within 24 h of a change in route of opioid administration.
Within 24 h of a change in opioid drug.
Without written instructions regarding their analgesic regimen.
Without a 24 h resource telephone number for pain management issues.
Without a bowel regimen.

If a Patient is Being Discharged on a Non-parenteral Route of Drug Administration, Make Sure

That the prescribed drugs are available in the patient’s community pharmacy.
That the patient has an outpatient prescription plan and, if not, will be able to pay for the pain medication out of pocket.
That the patient is given sufficient medication at the time of discharge to continue on the pain management regimen until the patient can fill the prescription at a community pharmacy.

If a Patient is Being Discharged on a Parenteral Infusion

Avoid sending the patient home on the weekend if possible.
Give the patient a 48 h supply of oral or injectable opioids to take home if there is a mechanical problem with the pump.

It is good practice for the physician or nurse to initiate contact with the patient within the first week of discharge to confirm that pain is adequately controlled. This acknowledges the central role of the family in the management of pain in the home, emphasizes that the family will be given ongoing support and back-up for their day-to-day pain management decisions, and ensures patient and caregiver confidence 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. If a patient’s pain escalates once at home, it is crucial to explore with the patient or caregiver whether the pain medication is being taken as prescribed and the availability and appropriate use of rescue medications. Close follow up with the family soon after discharge is essential as they are still learning the basic principles and skills required for pain management. Once these skills have been learned and a routine established, the need is for continuing support and validation.

Case 2: Transition From Home to Hospital

The Decision for Long Term Care Facility or Hospice Care

Some patients are unable to be cared for at home and are discharged to an extended-care facility. Such facilities include nursing homes and assisted/supportive living facilities. These patients are frequently elderly, debilitated, and receiving polypharmacy for chronic medical conditions. They are at high risk for inadequate pain assessment and consequent under medication for pain. In addition, the elderly and debilitated patient’s therapeutic margin may be narrow, and the patient may be at increased risk for developing troublesome side effects, including sedation and confusion. Close monitoring is required, with careful dose titration and adjustment based on ongoing assessment. This requires training, skill, and an institutional system in place that screens for the presence of pain and adequacy of relief on a regularly scheduled basis. It is essential that verbal communication be established between the physician/advanced practice nurse or pain management nurse from the discharging institution and the physician and nursing supervisor from the extended-care facility. This communication should take place prior to the patient’s discharge to the facility. The two teams can then work together to ensure adequate pain relief for the patient. In recent years, some long term care facilities have established contracts with community hospice programs and have developed palliative care approaches to the care of their residents.

Hospice care, the most widely available model of home care for the dying, focuses on optimizing the quality of life in those not seeking and unlikely to benefit from life-sustaining treatment. Hospice programs are run by both profit and not-for-profit organizations and have become part of the standard of care offered to patients nearing the end of life. Eligibility requirements for enrollment in a hospice program include a life expectancy of six months or less. A major advantage for patients and families followed in a hospice home care program is regular home visits by the hospice nurse and 24 h emergency support from skilled hospice nurses with back-up from the hospice medical staff. In addition, the cost of all medication related to the terminal illness is included in the hospice benefit without additional charge to the patient. Because of the variety of hospice models, levels of sophistication, and depth of services offered, the needs of the patient and the services offered through the program should be evaluated before referral. For example, although most hospice programs have changed their policy toward the use of technology in end of life care, in contrast to an earlier “no high-tech” approach, severe restrictions on the financial reimbursement for programs may limit their ability to deliver care to patients requiring the parenteral route of opioid infusion to manage their pain.

Sally is a 21-year-old woman who has suffered from neurofibromatosis and debilitating pain since her early teens. Even as she faced these challenges, she was able to finish high school and establish close friendships. However, in the past year, Sally was found to have a new tumor that is malignant and inoperable. Sally understands that her condition is terminal and now relies on her mother for assistance with activities of daily living.

Sally’s pain had been treated adequately with intrathecal hydromorphone delivered by an implanted pain pump. As her disease progressed and her pain has become more severe, she was hospitalized and relied on intravenous hydromorphone in addition to her pain pump. After a three week hospital stay, Sally and her mother are eager to be discharged from the hospital and want Sally’s remaining time alive to be spent at home. For this to happen, Sally would have to be off intravenous medications. This was accomplished by titrating the daily rate of intrathecal hydromorphone, transitioning intravenous hydromorphone to oral formulations, and adding adjuvant medications. Also, an assessment was made of Sally’s home environment, and there was the identification of specific equipment and supplies that Sally would need. A hospital bed and bedside commode were ordered for her home. Additionally, Sally’s mother had to learn techniques and skills to be Sally’s primary caregiver at home. Sally’s mother learned the necessary skills of how to help her daughter transfer from bed to chair and bedside commode, safe handling and delivery of medications, and communicating with Sally’s healthcare team. Weekly telemedicine appointments were scheduled with Sally’s pain physician. Face-to-face follow up appointments were to be scheduled as needed. Although Sally and her mother were not ready to have home hospice care at the time of discharge from the hospital, they have started to consider this option for some time in the future.

Discharge to Suspected Drug Diverting Environments

There may be patients who are going home to an environment where it is suspected that drug abuse or diversion may occur. The patients themselves may or may not have a history of illicit drug use. Patients with a history of drug abuse are at risk for having undertreated pain. Three subgroups of patients can be identified: (1) patients who are actively using street drugs, (2) patients who are in methadone maintenance programs, and (3) patients who have not used illicit drugs for many years. Patients with substance use disorders present a challenge in pain management at the end of life because of limited and avoidance of communication, late identification of palliative care needs, and preferences and coping strategies at the end of life that are different from those that are generally accepted. ^,

Patients with a history of drug abuse that require end of life pain control require strict monitoring during opioid therapy. It must be recognized that these patients, like any other patients, can experience significant pain but may require larger doses of opioids to control the pain because of the development of tolerance. If the patient is on an oral drug regimen, it may be necessary to give only a one week supply of the opioid at a time. Giving a larger amount at one time invariably results in the patient “running out of the drug” regardless of the amount given. Occasionally these patients are placed on a parenteral route of opioid administration to ensure adequate pain control and safety, maintain tighter control on the amount of drug used, and minimize the risk of drug diversion. In these situations, no extra opioid cassettes or infusion bags are left in the home, and neither the patient nor family is taught how to change the infusion. Infusion cassettes may be preferred over bags because of less risk of “siphoning off” the medication. Close coordination and communication between the prescribing physician or advanced practice nurse, the home infusion pharmacist, and the home infusion nurse is necessary for patients in this scenario.

Psychiatric symptoms and comorbidities such as anxiety, depression, and bipolar disorders are frequently seen in this population and need to be addressed. A team approach with optimal cooperation is essential in the care of these patients. If the patient is in an addiction maintenance program, the program must be contacted for assistance in planning the patient’s overall care. One physician or advanced practice nurse should be identified as the point person to adjust analgesics and write all prescriptions, and one nurse should be identified as the person to organize and coordinate the patient’s plan of care. Patients with pain who are discharged home to a high risk drug abuse environment encompass a relatively small group of individuals whose needs are more challenging and require creative solutions. However, with careful planning and close monitoring, safe pain management at home can be achieved for most people.

Communication: The Cornerstone of Good Pain Management in the Home

Foundation of Communication

To ensure that the pain management plan instituted in the hospital can be maintained at home, a series of steps can be taken. First, if home care nursing has been established, the home care nurse should be contacted to discuss the pain management plan. Second, the community pharmacy should be contacted to ensure that they have the prescribed opioids in stock, or if not, are willing to obtain the medication. In addition, it should be established specifically when the drugs will be available in the home pharmacy so that the patient is not left uncovered. In the event that the local pharmacy neither has nor can obtain the prescribed opioid, an alternative source for the patient must be located prior to discharge from the hospital. Third, the physician or nurse practitioner who will be responsible for writing the opioid prescriptions and titrating the drug must be clearly identified. Fourth, the caregiver should be instructed to establish a routine where the amount of medication they have left is checked on a scheduled basis so that the medication does not “run out” (the Friday night and holiday syndrome). Some families find it helpful to keep a one week supply of the medication to the side, and when they need to go into that supply, it reminds them to call their prescribing clinician for a new prescription. These simple steps can help ease the transition from hospital to home for patients with chronic pain and the family.

It is essential that the patient and family are given specific, detailed, written instructions, in layman’s language, of the pain management approach to be used, both pharmacologic and non-pharmacologic. The concept that analgesics should be used to prevent pain rather than having to be “earned” through experiencing severe pain is a principle foundation of the pain management approach that should be discussed with patients and family. This principle encompasses addressing the concerns surrounding the prevalence of addiction when opioids are used to manage pain and the clinical significance of tolerance (e.g. that the opioids may no longer be effective if they are used early on in a disease process). The patient and family must have no ambiguity about whom to call on a 24 h basis if pain is not well controlled or if the patient experiences troublesome side effects. In addition, safety issues surrounding opioids in the home need to be reviewed. These include that the opioids be kept in a safe place out of reach of children; that unused opioids be flushed down the toilet or returned to the prescribing institution for disposal; that if parenteral opioids are used, a syringe and needle disposal kit be obtained; and that needles and syringes, however well wrapped, should not be disposed of in household garbage containers.

Continuity of care for patients’ end stage illness or cancer with pain is particularly important. Frequently, patients receive their care in various medical settings with the involvement of numerous physicians, nurses, and healthcare professionals who may not have considered pain as a priority. In addition, effective management approaches may be changed because of the patient’s or families’ unfamiliarity with complicated medication administration, lack of community resources, or concern regarding opioid quantity or side effects. The hospice movement has addressed the need for continuity of care of the dying patient. Similarly, the need to bridge the gap between hospital and community is recognized for the terminal patient with chronic pain who is not imminently dying. A palliative care approach is seen as a valuable component to patient care that addresses the needs of the terminal patient with chronic pain earlier on in the disease process. Such a model of care is also important for dying patients who either do not have access to a hospice program or who, for a variety of reasons, choose not to be followed by the hospice system of care.

Tools of Communication

Effective communication between healthcare providers and caregivers is essential to the successful management of pain at home at the end of life. Identification of appropriate tools to facilitate communication between providers and caregivers should be established prior to or early in the transition period to home. The preferred method of communication and available technology at home should be discussed, as should the expected frequency and limitations to this mode of communication. Patients and caregivers should be encouraged to keep a daily diary to record pain level using a numerical estimate (e.g. a zero to ten scale), or a categorical scale (e.g. none, slight, moderate, severe), medication taken, other pain-relieving strategies used, extent and duration of pain relief, activity level, and interference with quality of life. Keeping a pain diary has been found to heighten patient and caregiver awareness of the pattern of pain, guide pain management behaviors, enhance a sense of control, and facilitate communication.

The use of the telephone is an important aspect of monitoring and managing pain on an outpatient basis. In addition, it makes expert resources available to communities where this might not otherwise be the case. Continuity of care also can be fostered through 24 h telephone availability of a pain management expert (usually an advanced practice nurse) to the patients, their families, and community professionals. Although the availability of after-hours and urgent care remains an integral resource, the utilization of these services was found to be significantly decreased with a model that employs proactive telephone-based communication. This proactive system provides a systematic call frequency and structure of one or two calls a day to each patient with standardized staff script, identification of clinical needs, and escalation of issues to a nurse for effective and efficient home care.

Although the use of the telephone remains a primary mode of communication, advances in technology have made the use of telehealth an emerging option to provide clinical support in the home setting. Digital technology has become ubiquitous in both healthcare and patient homes. Most patients are regularly using computers, tablets, and smartphones with internet connections. Many patients currently use the internet as a resource for knowledge that is easily available and accessible in various formats and use calendar and alarm functions for daily organization. However, there is an opportunity to increase the use of technology for more than just appointment organization and medication reminders. Telehealth can be in the form of video or virtual consultation to facilitate support and continuity of care, digital programs to reinforce education, and the utilization of alternative communication methods such as email, web-based programs, or applications to communicate or document changes in management approach. Advances in telemonitoring can enhance daily symptom management with triggers built to stimulate help seeking, help with reminders or prompts for medication management, or even initiate action by professionals. These tools can be used to personalize monitoring and augment patient-provider communication. Telehealth is regarded as an efficient and cost effective method of communication that improves equity of access to care. However, caution must be taken to utilize digital solutions in a way that adds value to patient care without adding unnecessary burden to the patient, caregiver, and provider.

Case 3: Telemedicine as a Tool of Communication

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