November 30, 1999
The focus of this chapter is planning for and facilitating the transition from curative to palliative care, with emphasis on the initiation of either home-based support services or institutional care. The interdisciplinary team approach is described. Strategies for promoting patient, family, and staff education and support will be identified and institutional issues that facilitate or hinder provision of effective palliative care are explored.
The primary goals of palliative care are to maximize the patient's sense of control, strengthen relationships with loved ones and limit care burdens.1-3 The importance of access to appropriate services in the successful delivery of palliative care to the chronically or terminally ill person with HIV cannot be overestimated. Knowledge of community resources such as government assistance programs, housing, personal finance, disability benefits, transportation, procurement of durable medical equipment, case management, food and shelter and emergency assistance is essential for helping the patient and family deal with the social sequelae of illness, disability, and death.
HIV is not just another terminal illness. If the same "too young" person presented with an equally life-threatening diagnosis of leukemia, health care teams would probably call family and friends for support. In contrast, people with HIV often choose to keep their diagnosis a secret.4 As long as fear and discrimination exist, agencies may be reluctant to accept people living with HIV/AIDS. Stigma associated with HIV and, hence, disclosure of HIV status continue to be significant problems complicating care.
The Interdisciplinary Team
Palliative care, by definition, is provided by an interdisciplinary team that, in addition to the physician, nurse (including nurse practitioners and nurses), social worker, nutritionist, chaplain, and other professionals, includes the patient, family, caregivers and other individuals important to the patient. The interdisciplinary team is a group of individuals working together with a common purpose for the greater good of the patient with advanced disease and his or her family.5 The goal of the interdisciplinary team is to provide the patient and family with a framework of emotional, physical, spiritual, and social support during the time of advanced disease.6
In the United States, the nurse, social worker or case manager often has the primary responsibility for the practical issues discussed in this chapter. It is important, however, that all individuals involved in the care of a person with advanced HIV disease be aware of these issues and be prepared to take the necessary steps to address patient and family needs related to facilitating the transition to palliative care.
While each member of the team has particular expertise, all share responsibility for advocacy, enabling, support, truthfulness, and mediation such that crises are prevented, priorities of the patient and family remain paramount, and overall suffering is minimized. Team members share information and work interdependently to develop goals with the patient and family. Information is shared among team members on a regular, organized basis.
In 1999, Cummings described the interdisciplinary team as a group of individuals working together with a common purpose for the greater good of the patient with advanced disease and family. Interdisciplinary team members should include the combined efforts of competent, skilled practitioners who offer confidential, nondiscriminatory, nonjudgmental and culturally sensitive care. Each individual has particular expertise and training and is responsible for making decisions and contributions within the area of their experience and knowledge.
The following sections describe the various roles and functions of HIV palliative care interdisciplinary team members.
Patient and Family Caregivers
The primary member of the interdisciplinary team is the person living with HIV, along with his or her family. Patients and their caregivers need to be active partners in developing and implementing the plan of care in order for the other members of the palliative care team to understand the complex care of families affected by HIV, their advanced care needs, patient and family caregiver concerns regarding approaching death, and HIV-specific bereavement needs.8 Far too often, health care teams see themselves as the "providers" and the patient and family as simply the "recipients" of their care. Advanced HIV disease care planning cannot be conceptualized in this manner: patients, family members and the interdisciplinary team members must address care planning and support on a mutual, interactive and fluid basis.
Medical providers include physicians, residents, interns, fellows, nurse practitioners, and physician's assistants. Responsibilities of these team members include the following:
Medical providers' decisions should be sensitive to cues of advancing condition related and unrelated to lab test values and diagnostic procedures. Consulting physicians are responsible to primary medical providers, and should work as part of the team, not as separate specialists. Specialists may include psychiatrists, ophthalmologists, neurologists, dermatologists, oncologists, gynecologists, orthopedists, or providers of any other specialty service.
Nurses include staff nurses, nurse practitioners, and clinical specialists in HIV, adult health, case management, palliative care, mental health, and home and community health. Nursing responsibilities include assessment of patients' physical and mental capacity for self-care, identification of ongoing care needs, and ongoing education of patients and families. Hospital nurses teach the patient and family throughout the hospital stay and confirm patient and family knowledge prior to discharge in order to enhance comfort, safety, and competence in care at home.
Nurses often have the most frequent contact with the patient and family in the inpatient setting, outpatient clinic or at home. It is the nurse's responsibility to assist the patient in coping with the effects of advancing HIV disease. This includes attention to some of the most personal and intimate aspects of physical care: pain and symptom assessment and management, personal care such as bathing, control of odor, care of pressure areas, mouth care, bowel and bladder care, as well as patient and family education on anticipated care needs. Nurses also assess the patient's and family's level of knowledge of disease, symptom management, comfort care, and ability to differentiate emergencies from normally anticipated events, and develop a plan for changes in patient status and emergencies.
As patient advocates, nurses help ensure, in collaboration with social workers, that the wishes of the patient are met, enabling the dying person and the family to remain involved in key decisions.
Clinical Liaison Nurses
Clinical liaison nurses promote up-to-date communication between providers in the outpatient setting and those in the inpatient unit, particularly for patients who are home-bound and require home-based care services. Generally, the nurse's role is to supervise and monitor concurrent censuses of active patients receiving home care and hospice care services. Specific responsibilities may include the following:
A clinical liaison nurse's activities also may include daily contact with home-based care supervisors and field staff regarding changes in patient status, streamlining of medication refills, verification of minor orders, and facilitation of urgent appointments. Because the care needs can change quickly, the liaison nurse provides troubleshooting for equipment approvals, special service approvals with HIV/AIDS programs, and contact of care providers. Updating interdisciplinary team members on the complex issues at home for each patient is an important role of clinical liaison nurses in support of the continuum of palliative care.
The goal of social work in palliative care is to help the patient and family deal with the personal and social problems of illness, disability, and impending death, and to provide survivor skill-building and support. Social workers assess many important areas of need for both patient and family, and help the family develop realistic plans for the present as well as the future. The strengths and challenges of each family unit are assessed and referrals made to available resources.
Social workers have comprehensive knowledge of community resources such as housing, finances, disability benefits, transportation, case management, food and shelter resources, emergency assistance, Ryan White CARE Act entitlements, home care, hospice, legal aid, counseling and testing, primary care, emergency assistance, and extended and residential care facilities. If there are no HIV-specific resources in the community, the social worker should locate people or organizations that may be willing to provide assistance for the patient and family.
Social workers also assess cultural and sociocultural factors unique to the patient and family, such as use of folk medicine or alternative healing practices in the home, and the family's ability and desire to care for the patient in a specific setting. The family culture may be unable to accept a death at home and therefore not even the best hospice and personal care attendant support in the home will foster a peaceful death at home. In these circumstances, death in the emergency room or during a return admission to the hospital may be exactly what the family considers the "best death possible."
Social workers can be particularly helpful when there is dysfunction within the family. Issues of substance and alcohol abuse are increasingly common within HIV care. Social workers can assist with screening for use and abuse, assessment of desire and need for rehabilitation services, and gaining access to such services.
One of the most important roles of social workers is advocacy on behalf of the patient and family. Social workers promote continuity of care transitions between hospital and home by arranging residential placement, making referrals to experienced home care and hospice agencies, and arranging for durable medical equipment and supplies. Often social workers play a key role in naming the actual needs of the patient and family.
Nutritionists and dieticians work with patients in all stages of HIV disease, but are most needed as a patient's condition begins to deteriorate. Nutritional intake and hydration are very emotional issues for family members and interdisciplinary teams. Both weight loss and malnutrition increase as HIV disease progresses. Changes in body composition, body image perception, digestion, tolerance of food, and side effects from therapies contribute to a reduced quality of life for persons living with advanced HIV disease. Even when patients have adequate food, nutritional knowledge, resources, and support, they may be unable to maintain weight. Dieticians can assist with early detection of factors related to impaired nutritional status that accelerate physical decline. Integration of anabolic therapies, nutritional supplements, appetite stimulants, and nutritional counseling are important for comprehensive HIV palliative care.
In advanced stages of HIV disease, reduced intake may not be a primary concern for the patient. Identification of the point when the nutritional interventions are failing is pivotal for the patient, family, and interdisciplinary team members. Nutritional goals are different for the chronically ill and terminally ill patient. Registered dieticians can discuss body composition testing as related to the prediction of the end-of-life. They are trained to understand and address unique social factors, monitor the effects of HIV on body composition and the effects of medications on metabolism, and address the role of changes in body shape in end-of-life discussions with patients and families. Complex nutritional concerns are mediated by active substance use, poverty, dementia, homelessness, adolescent motherhood, and complex medication regimens. Nutritionists can be valuable in discussions of the pros and cons of end-of-life nutrition and hydration options.
Pharmacists with HIV expertise play a critical role in reviewing medication regimens of the treatment plan for up-to-date pharmacokinetics. They assist medical providers with dose adjustments to reduce side effects and increase the efficacy of medications, bring new information to the team, educate patients and families about medication plans, and remain available to assist, evaluate and consult complex care situations.
Chaplains are available to assist the patient and his or her family in processing the meaning of illness in their lives as well as their fears, desires, and unfinished tasks. Responsibilities of chaplains include being a nonjudgmental resource for referrals for additional community support as desired by patient and family. Sympathetic chaplains are skilled listeners and able to meet patients and families without judgment. They are key team members in addressing the complex fears, stigma, chronic pain, symptoms and losses related to HIV. Chaplains provide a special presence with a focus and a stimulus for airing questions of meaning that are invariably present for patients and families with advanced disease. Issues of guilt for past events, feelings of meaninglessness, and the need to be listened to are important concerns for patient and family. Ideally chaplains offer a spiritual presence, not religious. Because so many of the other disciplines of the palliative care interdisciplinary team have many concrete as well as support tasks, chaplains are able to visit without any task agenda and follow the lead of the patient and family on a deep and existential level. Facilitating life review, dealing with regrets, giving thanks for what has brought love and meaning, naming life closure tasks, and preparing for what lies ahead are important responsibilities of this role.
Physical therapists provide physical assessment, education for patients and caregivers, and resources to enable patients to transfer safely, stabilize gait, and be mobile. They also assess the need for durable medical equipment. As patients are living longer with HIV, more patients are living with neuromuscular deficits for longer periods of time. Home safety and independence are ongoing goals for the patient and family. In the palliative care setting, a revised physical therapy goal may be to maximize patients' changing and often diminishing physical resources rather than to improve function.
Community Case Manager
The community case manager collects information about physical and psychosocial functioning and patients' social environments, develops care plans based on home assessment information and availability of resources, and links patients and families to community services, financial assistance, and medical and social services. In addition, a community case manager monitors patients on an ongoing basis, holds case conferences with other members of the outpatient team to evaluate the appropriateness of linked services for patient and family needs, and advocates to reduce barriers to services or generate needed services for individual families.9
The Transition of Focus From Curative to Palliative Care
Attention to alleviation of suffering, be it physical, emotional, or spiritual, is consistent with the highest aspirations of all health care professions. The integration, therefore, of palliative care with its broad clinical, social, and spiritual support into the care of someone living with HIV/AIDS can promote quality of life and realistic life planning at any time in the course of the illness. There is, however, often a time in the course of care when a formal transition from curative to palliative care is made. In the U.S., because of the peculiarities of financing palliative care services, most often this involves a transition from traditional medical care to hospice care. Traditionally, palliative care was 'saved' for hospice care. With the advent of highly active antiretroviral therapy (HAART), new theories of resistance, and re-sensitizing clinical trials, all categories of patients can be considered equally eligible for palliative care as well as more disease-specific care. Integrating palliative care, clinical, social, and spiritual support services promotes quality of life and realistic life planning.
Discussions with patients and families about palliative and hospice care can be difficult for even the most experienced providers. Provider communication issues are discussed in depth in Chapter 21. Some providers find it useful to keep in mind a sequence of facilitating questions that lead into a discussion of palliative care, first blending discussion of disease specific therapies with palliative care, moving toward exclusive focus on palliative care, and eventually introducing hospice care (see Table 22-1, PDF). It is also helpful to give patients and families a description of hospice that explains how the care addresses their stated wishes and concerns before the term "hospice" is used, to reduce risk of rejection (see Table 22-2, PDF).
Planning for the transition into palliative care must begin with an understanding of the patient and family's desires, expectations, and understanding of the patient's illness. In our society, many believe that hospice care means giving up all medications and getting ready to die. Therefore, it is often a mistake to jump directly into a discussion of hospice per se because patients and families unfamiliar with contemporary hospice approaches may attach negative connotations to the term. If the health care provider begins a conversation about hospice care or palliative care without first learning the patient's perception of his or her status, there is a great chance of the patient refusing such care. It is important that providers assess immediate needs and priorities as stated by the patient and family rather than assume that a problem that is obvious to the providers is of immediate concern to the recipients of care.10 The most important goal of intervention at this point is to facilitate discussion so that the patient and family's responses are as honest and realistic as possible. (See Chapter 21: Patient-Clinician Communication.)
Advanced End-of-Life Planning Discussions
Each member of the interdisciplinary team must be able to initiate and discuss palliative care, end-of-life care, and hospice services. Understanding the patient and family's perspective on their current and future needs and desires will help guide this planning and referral process. The following questions provide a guide for initiating a discussion about end-of-life-related experiences, desires and planning.
Begin by sitting close to the patient (preferably at eye level). Explain that you know he or she has been living with HIV for some time and that you would like to learn more about how he or she is doing. Explain that understanding more about his or her needs will help you advocate for the most appropriate services. Focus on the patient's perspective on his or her condition, and make sure that you allow the patient to answer the questions rather than giving directive information as you begin this assessment conversation. The following questions are also listed in Table 22-1 (PDF).
What has your medical team told you about your condition? What does this information mean to you?
This question is essential to assessing the accuracy of the patient and family's understanding of the current medical status and prognostic factors. Often a patient may state that he or she is getting worse, or not getting better, but that the medical team is telling him or her that he or she is going to get stronger. If the patient responds with little emotion or simply restates the medical team's words, ask, What is your body telling you about how you are doing? This question prompts a more introspective response that is always revealing of inner concerns and feelings.
Tell me about your good days. ... What are you able to do on those days?
The response to this question is equally revealing. The responses of the patient and family will let you know what gives them pleasure. By hearing about unique points of enjoyment and meaning, the team can learn whether and what pleasure activities are available to the patient and family. It is also a way for them to face the realities of how long it has been since they have had several of "those" good days in a week. Such information helps provide a perspective on the speed of loss of strength and other changes.
When is the last time you had a day like that in the past two months?
This assesses the degree of changes in physical strength, independence, and endurance. The most recent holiday is often a period of time that stands out memorably for families. They can recall where they were, what they wore and ate, and how they felt at the end of their activities. Because shortened prognosis is often connected to increasing weakness, assisting the patient and family to answer this question aloud helps them state in their own words how and in what ways things may be different now. This begins the patient and family's personal process of self-disclosure about important changes in current energy and needs in the present tense, which enhances realistic planning.
Have you had any bad days lately? What makes them bad?
Health care providers so often are concerned with a patient's viral load, adherence to medications, and weight stability that we forget to ask the patient what defines his or her hard times. Listening carefully to the patient's response, we learn about not only the patient and family's priority concerns but under-managed symptoms impairing the patient's quality of life that we may have been unaware of before. Patient and family responses also help to identify areas in which the family may need outside assistance, such as on-call nursing support, child care and respite assistance.
What kind of assistance do you need on days when you do not feel well?
In general most individuals and families do not like to depend on other people for care and assistance. They often are concerned about being a burden, inconveniencing others, and fearing they will use up their "personal favors" too soon. Give the patient and family permission to fantasize about what kinds of things may be helpful.
If your condition worsens, do you wish to go back to the hospital?
Traditionally, we tell patients, "If you get worse, go to the Emergency Room." This is fine if there is an acute infection or event that will respond well to emergency attention. But the person with advanced HIV who has been hospitalized a number of times may already have considered not wanting to come back to the hospital. The patient's response to this question also helps to guide home-based care options such as referring the patient to home care or hospice. The patient who is sure he or she wants to return to the hospital is a better candidate for home care where the on-call service is designed for emergency intervention.
What are your most meaningful goals at this time in your life? Is there anything we can do to help you achieve them?
Adults and children all have meaningful life goals. Some people are very open to discussing their goals, others have barely whispered them to their closest confidant if at all. By gaining an understanding of the patient's goals, team members learn how to plan treatments and care supports. For example, a woman who needs to complete guardianship arrangements for her children may benefit from the support of blood transfusions for temporary strength, whereas a person who has settled his or her affairs might not consider it a benefit.
In the event of your death, is there anyone or anything that you are worried about?
When people think of the possibility of their own deaths, sometimes it is easier for them to think of the needs of others rather than themselves. This pertains to their children and other loved ones as well as cherished pets, plants, or any other living things that would suffer during a hospitalization, long-term placement or death. A hospital stay can provide a trial run for future custody or referral information. Sometimes, discussing these concerns provides a way for patients to express their anticipatory grief for meaningful aspects of their lives and their need to know that these will be cared for. Discussing such worries can facilitate people's acceptance of hospice services so that their loved ones can benefit from the social work services and bereavement follow-up.
Have you ever heard of a medical power of attorney or a health care proxy?
Assignment of a health care proxy to make medical decisions on their behalf is an important safeguard for patients to know that their end-of-life wishes will be honored. Patients should select a person who knows and understands their personal desires for quality of life decisions that will affect the direction of their care. Providers should inform both the patient and his or her health care proxy of the patient's condition and options for care so they can make decisions from the most informed perspective possible.
Do you have a living will? Who in your family is aware of it and has a copy?
A living will demonstrates a clear and deliberate desire not to have life prolonged beyond its natural limits, and most frequently denotes withholding invasive life-sustaining interventions. A true copy of this document should be placed in the patient's chart in the hospital, group residential facility, extended care, and home-based care settings. Patients should be informed whether their state honors this document as a legal determinant of care planning or merely as a guide that can be overruled by their primary provider.
Are you having any chronic pain or distressing symptoms?
At an advanced stage of any disease, chronic symptoms not only serve as a reminder of advancing illness and provide a negative distraction from enjoying the limited length of life available, but also become internalized as an intense task of spiritual coping. It becomes impossible for a person to relish quality time with loved ones or complete important tasks if he or she is constantly struggling with nausea, pain, diarrhea, itching, or other uncontrolled symptoms. The patient whose symptoms have been very difficult to control may benefit from the palliative symptom management of the hospice team, and such information can be stated in the explanation of hospice care.
What can we do to make your life more comfortable/manageable?
Listening to the patient and family's responses, repeating back their words, and letting them know that you have heard them provide powerful validation for patients and families when clear, reasonable requests have been stated. It is most important to respond to their requests as quickly as possible. A response may be as simple as letting the patient go home before the weekend to be with family and completing future tests on an outpatient basis. Or, it may be as complex as arranging for minor age visitors to visit their loved one in a room with contact isolation.
Only after these questions have been asked and answered is it time to explain hospice and other options for advanced disease care. From the content of this prompted conversation, care planners should have learned about the patient and family's concerns about the burden of care and approaching death, the presence of distressing symptoms, and after-hour, on-call needs. By listening to the patient and family recall the frequency of good days versus bad, the pace of progression to death can also be estimated. Any ambivalence about returning to the hospital when the patient's condition worsens should also have been clarified. Finally, the patient and family's own words, their personal examples of concerns, and their identification of life priorities will guide the wording to be used in explaining palliative care, hospice, home care and long-term care planning.
Sometimes, patients and families refuse hospice care at the time it is offered. This is often frustrating for the referrers because they may want the patient to benefit from the clinical expertise, on-call availability, support services and anticipatory grief work prior to active phases of dying. In these cases we must evaluate the degree to which we have given the patient and family the freedom to choose between home care and hospice with their full understanding of the differences.
Because of the terminal nature of hospice care, young people are often comforted by knowing that if hospice care does not feel right for them, they can go back to standard care. We must remind patients and family that HIV is an unpredictable disease, and that at this time we believe hospice care is best to meet their needs, but if in the future they get stronger, or they no longer need or wish the hospice's services, they may be discharged. Giving patients and caregivers the permission to think of hospice as a specialized care for their current condition and advanced care needs provides great relief since they may have only known hospice as a "last stop before you die," and with HIV that is not always true. A gentle personalized explanation of hospice as a care option can often improve acceptance of such services. Care providers must recognize that acceptance of hospice is not the absolute goal of care planning. Assuring patients and families of viable care options that match their values, resources, and desires remain our main priority.
Hospital Discharge Planning
The decision to formally engage home care and hospice care services often occurs during the course of a hospitalization. Although eligibility for palliative care can be determined across any stage in the spectrum of HIV disease, HIV-related inpatient hospital admissions are frequently one of the clinical markers of advancing disease. Prior to each hospital stay, the patient has developed chronic disabling symptoms or new onset symptoms that indicate advancing HIV disease. Increasing fatigue, changing social support, and complex home-based care needs require reassessment during each hospital stay. Comprehensive discharge planning is an essential task for promoting the continuum of care. Integration of HIV palliative care services need not be postponed until patients are in the most terminal phase of life.
Elements of comprehensive discharge planning from the hospital setting require an array of assessment, education, support, and community referrals. Some of these care elements include understanding the patient and family's adjustment to illness; understanding the unpredictable nature of HIV; sensitivity for the patient witnessing other patients' declining status; sick and coinfected partners; sudden acute, life threatening illnesses; fear of the unknown; dependence on others; and uncontrolled pain or other symptoms. Interdisciplinary participation in the education of patients and caregivers on important aspects of the patient's condition, disease trajectory, prognosis and direct care are predictors of improved patient and family satisfaction.11
Patients' resources may have drastically changed since their most recent hospital admission. The patient may no longer be able to care for himself and live independently. He or she may have experienced a loss of housing, income, insurance benefits, and/or family support. Caregivers awaiting the patient's discharge may need increased assistance at home for extensive care. This is why it is important to make a comprehensive assessment of new needs and any adjustments to the plan of care prior to discharge. The revised discharge plan must be communicated to outpatient primary care providers and case managers so that they can reassess patient and caregiver needs once the patient is home.
Families need to understand the seriousness of advancing disease and the implications of limited life span for their loved one. One of the major discharge planning problems for families is that it is not always clear when someone is dying. Sometimes, even if a loved one has been in serious and steady decline with wasting, disorientation and a cascade of other symptoms and infections, it can be hard for the closest caregivers to see or admit what is going on.12 It can make a tremendous difference for physicians, nurses, therapists, social workers, and/or friends and loved ones to acknowledge the approach of death gently, but clearly.
For a smooth transition to home-based care services, discharge planning should begin as early as possible. Evenings and holidays are inappropriate times to discharge a person to home-based care unless thorough arrangements have been made regarding access to ordered medications, equipment, supplies and agency personnel. Referrals to home nursing and palliative care services should be made with much advance notice because it may require several days to secure all services for inpatient teaching and home equipment.
Assessment for Home Care
One of the most important practical questions facing the patient and team (whether the team is inpatient staff, outpatient staff, or both) is "Can this patient and family live safely at home?" An assessment of the physical and emotional condition of the patient is necessary to understand what needs must be met. This is most often the responsibility of the nurse and/or physician. However, a comprehensive assessment for home care must take an interdisciplinary approach in addressing several important issues (see Table 22-3, PDF):
Having someone in the role of primary care provider in the home is necessary for patient safety and assistance as well as to coordinate care with the home care or hospice agency, and assess and deal with changing aspects of patient care. Ideally, the primary care provider must be well enough physically and mentally to provide personal care, food preparation, safety supervision, errand running, and household management, as well as be the primary contact for health care providers.
Additional considerations arise when planning for home care for infants or children who require palliative care; see Table 22-4 (PDF).
Unanticipated barriers to home care, such as inadequate or unstable housing, substance abuse or lack of insurance, may require that discharge from the hospital be postponed. Some home situations are inappropriate for palliative care supported by home care or hospice services (see Table 22-5, PDF).
If family members have unrealistic expectations of the course of the illness, they may expect that the patient should not be discharged from the hospital until their health is improved. Conversely, the patient, family members and caregivers may be reluctant to have the patient return home from the hospital at all. Often this is due to specific fears that can be addressed in the transition planning process (see Table 22-6, PDF). Some of these fears are real. Others can be ameliorated with education and support.
Home vs. Institutional Care
Once palliative modes of care are accepted, patients and families need to consider the type of care that matches their needs, as well as begin development of a plan for the place of care and the anticipated location of the patient's death. Most Americans prefer to die at home.15 An individual can be surrounded by familiar and cherished family, pets, and belongings if care is provided in the home. However, there are times when a patient's need for safety and comfort exceed the capacity of his or her home. The patient may live alone and not have a caregiver; caregivers may be overwhelmed; some people may not have a home to go to; and, some home environments may be difficult or impossible for providers to access.
The best outcomes in home-based care are attained when care is provided with the support of others. Even under the best of circumstances, a caregiver needs a solid foundation of support to call on when needed. Although some families manage to mobilize last-minute support networks, the end-of-life is not a good time to make new personal connections or start support groups.12 In these instances, professional staff should plan for and assume an even more important role.
In North America, one of the primary goals of palliative care is to support people to die in the comfort of their own homes, and palliative care practitioners hold death in the home as the "gold standard."16 However, there are many issues to consider in discharge planning. We must consider the physical dependent care needs, and whether or not the patient and caregivers desire a home death. The physical and emotional devastation of advanced HIV illness makes extraordinary demands upon families and our health care system in relation to the type and level of service required to support end-of-life care at home.17
Home care is primarily rehabilitation focused. Skilled nurses provide intermittent, time-limited visits in the home, to monitor, instruct in care, and perform specific nursing interventions under the direction of the primary physician (activities might include changing dressings, teaching and administering intravenous treatments, monitoring medication adherence, and obtaining blood and specimens for laboratory analysis). Home health aides are available for assistance with bathing and personal care (generally two-hour intervals several times a week). Physical therapists are is available for gait training, instructing strengthening exercises, and safe transfer instruction to patient and caregiver. Social workers may be available for limited visits for assessment and referral for community services, benefits, financial assistance and/or transfer of patient to extended care or residential assisted living.
It is important that families, patients, and providers have some criteria for selecting a home hospice agency. One of the greatest predictors of successful care is experience. Ideally, families need to know that the chosen agency can address anticipated, predictable symptoms of HIV disease, and will have knowledgeable responses to the unpredictable events.6 At a minimum, caregivers should know the number of years an agency has been in operation, the status of the agency's license, the agency's membership in the state's home care or hospice organization, and accreditations held by the agency.
Hospice Care and Services
Hospice care is designed for patients living with advanced disease conditions and their families. Education, symptom management, on-call support, care focused on the end-of-life, and bereavement are the cornerstones of hospice care. Symptom management includes ongoing assessments, intervention and follow-up, education, and promoting optimal comfort.
Hospice teamwork assists the patient and family to design a personalized plan for disease progression. This plan will address preventing anticipated symptoms, clarifying desires for place of death, and related concerns. The focus on symptom control, education and support is to make the patient and his or her significant others as self-reliant and comfortable as possible at home as they plan for approaching death. Care includes skilled nursing (provided by R.N.s), personal care (by home health aides), social work services, volunteer support, pastoral care and bereavement support for one year after the patient expires. Comprehensive support is key to hospice design. Assessment of and support for physical, emotional, social, financial, and spiritual aspects of the patient and family's lives are the priority concerns and focus of care delivery.
Traditionally, only clients who were no longer interested in measures to prolong their lives were eligible for this program. The unique challenges in predicting prognosis and symptom management with advancing HIV disease have pressured some changes in the definitions of HIV hospice care. Specifically, the severity, complexity, and unpredictable trajectory of the disease have blurred the distinction between what was previously understood as curative care and what was considered supportive palliative care.18-20 At one time, patients were asked to give up all treatment medications, IVs, hospitalizations, diagnostic tests, and hopes for recovery. Today with patients responding unexpectedly to starting and withdrawing of aggressive antiretroviral therapies, prolonged disease soliloquies, changing prognoses, and new hopes, hospice referrals are changing to include more blended care.
Medicare Skilled Nursing Benefit versus Hospice Medicare Benefit
For patients who have Medicare or Medicaid in States with the Medicaid Hospice Benefit, choosing hospice can be very complicated. (See Chapter 18: Legal and Financial Issues for more information about these sources of care financing.) Terminally ill Medicare or Medicaid recipients can choose the Skilled Nursing benefit or the Hospice Medicare Benefit. By electing the Hospice Medicare Benefit, the patient designates the hospice to assume the financial responsibility for all care related to the terminal illness. This obligation provides all the core services of hospice care as well as durable medical equipment, palliative medications, respite care and 24-hour nursing care if needed.
There continues to be ongoing debate regarding the hospice agency's obligation to continue expensive viral suppressive therapies. Although many of these therapies may provide symptom relief, their cost would exhaust more than the per diem rate of hospice reimbursement.
Ideally, every hospice could benefit from dual licensure as a home care and a hospice agency. An agency licensed for both home care and hospice has more flexibility in care delivery strategies for patients who are continuing to blend palliative care and support with final treatment strategies. This allows the hospice to bill as home care skilled intermittent visits by the hospice nurse and home health aides, as well as other therapies as ordered. Social services can be billed at the maximum number of visits allowed. Additional visits will not be billable, unless allowable through other sources of funding such as end-of-life care within Ryan White CARE Act Titles I or II.
The criteria for a hospice referral for a person with advanced HIV can include the following:
When patients do not have a home to return to, or the necessary support is not available, transfer to a residential facility can be a welcome option. Sometimes the home environment is not a safe place for the patient to live alone. There are several alternatives to home discharge. Depending on the available resources in each healthcare provider's region, assisted and independent living residential facilities may be available. Skilled nursing homes and extended care facilities may also be available depending on the patient's location, physical care needs and benefit coverage.
Residential housing designed for people with HIV is often a welcome alternative to institutionalized care facilities. A variety of housing models have developed over the years for people with HIV. Although there are several common types of residential models, care should be taken to evaluate support resources available to the patient in each type of home prior to any referral. Scattered-site apartment programs for individuals and HIV-infected families are operated in many locations throughout the U.S. These residences are best suited for those patients who are still able to maintain a high level of independent functioning.21
The most common reasons patients are admitted to long-term care facilities are completion of medical therapy; prevention of unnecessary hospitalizations when home care is not available; continuous care needs including dementia-related cognitive and/or functional disability; terminal care when home settings are not available;22 and, institutional care reimbursement bias since long-term care is less expensive than acute inpatient care.
Skilled Nursing Care
Sometimes a patient with advancing HIV wishes comfort care only, but is referred to a skilled nursing facility rather than a long-term care facility because of the reimbursement incentives related to restorative care versus long-term care. Medicare skilled nursing facilities cover the costs of skilled nursing and therapies, and many facilities attempt to maximize the number of resident days with this coverage because it is the most lucrative for the skilled care facility.23 This may offer patients more care therapies such as hydrating IVs, parenteral nutritional and physical therapy.
The skilled nursing facility, the subacute long-term care option, was designed primarily for geriatric populations, to serve patients who required skilled nursing care before going home from an acute hospitalization.24 Skilled nursing care may be more accessible for HIV-infected clients in need of physically supportive care. The increasing chronicity of HIV disease with newer therapeutic agents and neuropsychiatric co-morbidities will most probably increase the need for long-term care. This level of care may be increasingly important not only in reducing acute hospital length of stays but in creating a bridge to community-based residential options in the emerging chronic disease phase of the AIDS epidemic.24
Child and Adolescent Care
Children and/or adolescents who require a transitional phase of stabilization before going home from the hospital have intensive medical, familial, and social needs. (See Chapter 12: The Care of Children and Adolescents.) Chronic care for pediatric AIDS patients requires flexible goal orientation within each treatment phase of care including long-term care and skilled nursing facilities. An overarching problem is that the U.S. lacks a national care policy to insure children and adolescents needing such care.24
Helpful Placement Strategies
Interdisciplinary team social workers will generally be the best resource for placement advice. A well-informed social worker will know about admission criteria and policies of each facility. A thorough assessment of the patient's social history should reveal any information that may influence housing placement, such as how well the patient handles conflict, anger, frustration and grief. Equally important, providers should be knowledgeable about the patient's dietary restrictions, mental health, substance use, and anti-social behaviors such as confused wandering, sexual relations, public masturbation, stealing, or personality disorders causing team and social splitting and chaos.25
Regular providers of HIV care would greatly benefit from visits to their local facilities to learn about the physical settings and support services. Recent consumers of residential housing services can also be reliable informants.
Encourage the family to visit potential settings and determine which facility feels most suitable in terms of location, attitude of care providers and culture sensitivity.
Planning for Dying
Planning for death and dying is an important part of caring for the HIV/AIDS patient and his or her family. Conversations on this topic can be particularly challenging because of the substance of the issues that must be addressed as well as the difficulties inherent in communication between provider and patient at such a difficult time. Provider communication issues and legal issues are discussed elsewhere in this guide. (See Chapter 21: Patient-Clinician Communication and Chapter 18: Legal and Financial Issues.)
It is particularly important that people with HIV and their families understand that even in some of the most confining situations they have choices. Does the patient want to die at home or in an institutional setting? Who does he or she want as a health care proxy? Who does the patient want to act as guardian for his or her children? Who will care for pets? Who do patients want to be with them at the end-of-life? One of the greatest losses humans suffer near the end-of-life is the loss of autonomy. When it is possible, therefore, to give a patient a choice, even in seemingly trivial matters, it is important to do so.
Developing a realistic understanding of the possible ways in which dying may occur improves the likelihood of families making choices consistent with their stated desires. Health care providers can support families by assisting them in visualizing the dying and death of a loved one in broad ways that are meaningful to the patient.26
It is particularly important that family members have a clear understanding of what they need to do, whom they can call, and where they can turn when death is imminent. Often, if a plan is not clearly understood, caregivers may yield to the impulse to call an ambulance or bring the patient to an emergency room. This risk is increased if home health aids or other visiting professionals do not clearly know the patient's wishes. It is, therefore, a good idea to keep a brief written summary of the patient's desires, along with copies of pertinent legal documents, in a prominent place near the bedside (see Table 22-7, PDF).
Caregivers should be encouraged to discuss with their doctors and nurses the symptoms and signs they can expect and what to do when these occur. A clear plan of action to address these symptoms and signs should be developed in consultation with the interdisciplinary team well ahead of the time it may be needed. It is most helpful to make sure that medications needed to manage these symptoms are handy and that a list of all medications is kept up to date. Similarly, an easy-to-access list of important phone numbers (doctor, hospice, nurse, family members etc.) should be maintained so that, in the event of clinical deterioration, confusion is minimized.
Supporting the Caregivers at Home
Taking care of a loved one with advanced HIV disease can be very frightening if the caregiver does not know what to expect. In addition to understanding the anticipated changes, the caregiver must also know how to promote the patient's comfort in simple and successful ways. All members of the interdisciplinary team should assist with teaching caregivers, normalizing their care expectations, preparing them for anticipated physical changes, and supporting their care delivery. (See Chapter 20: Care for the Caregiver.)
Ideally, the education of caregivers should begin during clinic or hospital visits before the caregiver assumes full-time responsibility for care. The education of caregivers and family members should include establishing and agreeing on the overall goals of care, the likelihood of symptoms, and the role caregivers play in end-of-life care. Families need to know general principles of pain and symptom management. This includes learning to take symptoms seriously, understanding how the patient expresses discomfort, being knowledgeable of treatment options, and understanding whether interventions have provided relief. Family members also need guidelines for handling themselves appropriately and knowing what sorts of situations require them to contact their health care provider (see Table 22-8, PDF).
A patient with advancing HIV can experience numerous symptoms related to the HIV disease, medications, HIV-related infections and conditions, and pre-existing conditions. Symptoms associated with advanced HIV disease include, but are not limited to, the following: 8, 27, 28
General symptom control at the end-of-life should focus on comfort issues, pain, noisy and moist breathing, dyspnea, and restlessness.29
Caregivers need to be taught to utilize proxy intensity scales based on their close knowledge of the patient. This enables caregivers to make appropriate comfort choices such as when to administer "as needed" medications and when to increase a dose of long-acting medication, as well as to monitor for new needs. Pain assessment and management strategies are explored elsewhere in this guide. (See Chapter 4: Pain.) Education of lay caregivers in these skills is an important component of successful discharge planning. Increased caregiver competence in addressing anticipated symptoms can ease caregiver burden and increase the home comfort of both the patient and the caregiver.
As someone approaches the living-dying phase, families acquire additional care tasks and must reorganize the family in order to overcome role strain.30 This includes a significant change in the household/family leadership order. For example, the caregiver must manage his or her own life as well as become the patient's bill-payer, personal shopper, and child care provider, and act as the patient's primary social contact and health care coordinator, all of which may not be a practiced or comfortable role for the caregiver. All the while, family caregivers are dealing with the imminent separation from the dying person, and possibly their own HIV infection.
Most importantly, caregivers need to maintain a sense of competence. Although caregivers cannot be rescued from feeling helpless in the quest to keep a loved one alive, others can assist them in feeling that what they can do is helpful and meaningful.12 This includes providing assistance with developing meaningful tasks and integrating palliative care team services as care needs advance, and referring patients and families to hospice care (see Table 22-9, PDF).
Certain active signs and symptoms of approaching death may be seen in the last several days and hours prior to a natural and expected death. (See Chapter 24: Medical Care at the End of Life.) Specifically, pulmonary aspects of the dying process call for caregiver management of the patient's distress and discomfort. (See Chapter 6: Pulmonary Symptoms.) Caregivers should know that the natural changes as their loved one gets sicker and approaches death may include the following:
Reduced Intake and Interest in Food and Fluids
Caregivers should be taught not to force food or drink into the patient's mouth nor try to use guilt to manipulate the patient into eating or drinking. Small chips of ice or frozen juices may be refreshing so long as the patient can swallow without difficulty. If the patient does want to eat, small frequent feedings of desired foods and fluids may be more manageable and appealing than large meals. The team nutritionist can be very helpful in teaching techniques that may enhance comfort, nutritional quality, and feeding assistance with swallowing changes. Most important, families and caregivers need to know that these changes do not cause pain and that if pain occurs medical attention is required.
Decreased Interest and Attention
As the body weakens, a person's involvement with other people, pets, hobbies and other interests may decrease. Individuals may lose interest in favorite activities or topics of conversation. They may want to be alone or with just one person at a time or ask that visits be shorter than usual. Caregivers need to be reminded that the patient is easily tired and weak. Although it is hard for caregivers when they feel shut out, they can be helped to understand that withdrawal from life is a natural part of preparation for death.
Reduced Strength and Ability to Move
Families and caregivers need to know that it is natural for a patient to become weak and require increasing amounts of rest to perform even simple tasks. It is important to assist and supervise all of the patient's activities to promote safety.
Changing Sleep and Rest Patterns
As an individual gets closer to the end-of-life, it is normal for day and night sleeping patterns to reverse. Rest is important for everyone. If the patient is unable to sleep for several nights, pain should be assessed and health care providers should be notified. When fatigue is profound, patients may sleep with their eyes and mouth open and appear unresponsive. Caregivers should understand that this is expected and that, at these times, their role should shift from "doing for" to "being with." This means that families should sit or rest near their loved ones, hold their hands, apply lotion to their skin, soothe their faces with a warm moist cloth, play music, or converse as the patient would expect them to do.
Most importantly, caregivers should not attempt to awaken the patient by shaking or speaking loudly to them. They should reintroduce themselves to the patient upon every contact and avoid asking "do you know who I am?" Loved ones experience great pain when they are not recognized and patients may withdraw from interactions if they fear they are causing pain. As the patient responds less, families should continue to speak directly and normally and assume that the patient can hear them, as hearing is the last of the senses to be lost.
Loss of Control of Bladder and Bowels
As the body weakens, the amount of urine normally decreases and becomes tea-colored or darker. The patient may lose control of his or her bladder and/or bowels as the muscles in that area begin to relax. The home care or hospice nurse can determine if there is a need to insert or apply an external or internal catheter for comfort. Protective measures such as layering the bed or resting area with pads will prevent frequent linen changes and soiling of furniture. Wearing gloves when handling soiled clothing and linens, and washing hands with soap and water before and after personal care, should be demonstrated and instructed. Care should be taken to keep the patient clean and comfortable. The home care or hospice nurse should teach techniques for cleanliness, universal body fluid precautions, skin care, and monitoring of bowel patterns.
Described "Supernatural" Experiences
It is common for many people who are getting closer to dying to describe experiences of feeling that they have been in contact with people who have died before. Generally, these experiences are described as "So and so came to see me" or "I just saw so and so." Although these may not seem believable to many people, they feel very real to the person experiencing them. For people who have significant anxiety about their approaching death, this is often a time when they may express feeling less frightened. Often people are reported to be resting better and feeling calmer with less emotional strain or struggle after describing this type of experience.
It is very common for caregivers to witness a predictable, significant increase in energy and restlessness at the very end-of-life. This may occur after a period of extreme weakness and deep sleeping, then suddenly the patient becomes VERY alert. The patient may want to stand, walk, or sit upright in a chair, when they have not done so for days or weeks. Patients may start taking their clothes off and on when they normally were quite modest. They may be found standing naked at the end of the bed. Agitated "picking" at their clothes, bed linens, or the air may also be a sign of this stage. Other times the patient may request specific food, and eat the entire amount when they have not eaten more than a spoonful of anything for days.
Often this surge of energy confuses and sometimes frightens the individuals closest to the patient. When not educated about the possibility of it occurring, loved ones can interpret this surge of energy as renewed strength and an answer to prayers for recovery. It is important for families to be educated about this possibility, because it is a potential sign that death may occur within the next 24 hours.
People With Special Needs
The greatest percentage of HIV-infected women are mothers of young children under the age of ten years. Often women learn of their HIV infection during their prenatal care, which means they immediately have pregnancy needs as well as needs regarding their HIV status, prevention of HIV transmission to their unborn child, risk reduction education, and the possibility of their other children being HIV-infected.
Crisis in the parental role occurs when a mother's HIV disease advances to a stage that impairs her energy and function. With HIV advanced disease, arrangements must be made to care for children on an emergency basis if her condition worsens as well as for long-term guardianship or custody. Women who have been infected by a male partner often are caring for that person as well as their children, or struggling with the loss of that person in their lives. Clinically, a mother may push her own physical, emotional and spiritual limits for the sake of her children and maintaining her primary parental role.
Her own impending death critically affects a woman's caregiver role. When a mother leaves children behind, she may be leaving them in the custody of a sick partner or an aging sick parent, or deciding to separate them among family members. She may experience a very intense sense of responsibility, fear of rejection, guilt about transmission of HIV to her children, and guilt about leaving her family at a young age. There often may be great denial that her own care needs have increased.
The needs for women to have supportive housing and to be able to live with their children as long as possible are increasing. When women are unable to handle the care of their children, unlimited visitation by their children needs to be assured. Fear of losing touch with their children frequently causes women to delay acceptance of hospice services until the very terminal stages of life. (See A Clinical Guide to the Care of Women With HIV for more on caring for women.)
Children continue to be born infected or to contract HIV at early ages. (See Chapter 12: The Care of Children and Adolescents.) Children at the end-of-life have special needs. When planning care across the spectrum of inpatient and outpatient services, a formal assessment of the family at home helps determine suitability of the home setting as well as the willingness of family to participate in care.10 Before discharging a child to home, health care providers must assess the family's understanding of HIV infection and the child's illness trajectory, and identify the individuals in the family who are aware of the diagnosis. Also, planning must occur for the home needs of uninfected siblings including privacy, attention, role changes and anticipatory grief.
Surrogate caregivers are needed for infected children when their parent(s) is ill, unavailable, or already has died. Whenever possible, family surrogates are ideal caregivers: they can help normalize the child's life to the greatest degree, facilitate visits of their parent when possible, and help the child keep fond memories of parent(s). However, extended families cannot always assume such child care responsibilities, because of problems such as living in too small a space or unfit housing, or caring for other dependents or relatives.
Often the medical staff has come to accept the child's impending death while the parents still favor heroic lifesaving measures. Conversely, families may accept impending death before the medical team. When families and health care providers are in conflict over care strategies for a child in advanced stages of HIV, it can help to consult a facilitator who is not involved directly in the patient's care, to help family and team reach a consensus.10
For children with advancing HIV, the goals of case management are to reduce the length of hospital stays, prevent future hospitalizations, promote alternative resources and settings and identify children who would benefit from a coordinated continuum of care.31 Pediatric case management should be considered whenever patient and family must interact with several groups of care providers, such as outpatient clinic staff, clinical trials staff, and home care infusion staff. Families need to have one central phone number to call for the majority of their assistance and care guidance.
Family-oriented case management is the optimal support. This includes assessment and interventions for the entire family as a unit. Family case management, similar to hospice case management, includes the multifaceted layers of practical assistance with support for the emotional and social adjustments, and crisis intervention.
Families living with advanced HIV disease in rural communities have unique problems, including geographic isolation and added caregiving responsibilities. When HIV advances to the point of disability, the entire family structure feels the strain of increased responsibilities. Resources that are taken for granted in urban settings are scarce in rural settings. Professional caregivers as well as patients and their families are often isolated from the resources needed to help care for themselves.32
The barriers to advanced and palliative HIV care in rural communities are numerous, and include the following:
Poor rural families can live with extraordinarily limited resources. Some families still live in homes without running water, telephones, electricity, indoor plumbing, or adequate clean food. Homes may have dirt floors or be overcrowded single-room houses or sheds that are not protective for severe weather conditions. Incest, substance abuse and alcohol abuse can be additional stressors in remote communities. Cultural sensitivity must be developed in working with families with such severely limited resources. Care must be taken not to shame families for conditions under which they live. Palliative care goals must be adapted to the expectations and needs as defined by the family.
In rural areas, people with HIV and their families often have very strong disclosure fears. When needs increase and HIV-positive people become more symptomatic, they may require the services of the local hospice and the HIV agencies. The more remote the area, the greater the fear of disclosure within the surrounding community. Even if only one person in the family has HIV, the stigma can remain with that family long after that person's death. Agencies must guard the confidentiality of their clients with the utmost vigilance for these reasons.
Families living in remote rural areas often grieve in isolation. It is important whenever possible to refer the family to hospice care (prior to their family member's death) to facilitate access to bereavement support.
Strategies to improve access to HIV palliative care in rural areas include the following:
Similar to the rural poor, individuals and families living in urban poverty also can live in extreme situations of despair. Common stressors include small living spaces that are overcrowded and lack privacy, including lacking individual sleeping space. Many families live without telephone, electricity, running water, and shelter from extreme climate conditions.
Crime is a daily occurrence in impoverished urban communities. Theft of medications, clothing, vehicles, furniture, entertainment items, and food can occur at any time. Individuals and families often fear that flying bullets or stabbing will take their lives before HIV has a chance to advance. For many people, HIV is not "the" significant concern until it interferes with their ability to survive within these poor conditions.
Determination of suitable housing is difficult for many very poor families. Sometimes the mere fact that they have a roof over their heads, running water, and intermittent electricity may be a great improvement over previous conditions. It is critical to remember that many families have had their children removed from their homes due to determinations of unfit housing. For parents with advancing HIV, holding onto their home with their children may be their highest priority. At the same time it is also the responsibility of the palliative care team to notify protective services if there is a concern about abuse or neglect of any family members in the home.
Many very poor families may have a history of negative social service experiences. This may cause a rejection of any care provider entering their home. Families have been known to refuse visits from case managers, home care and hospice nurses, home health aides, pastoral workers and volunteers.
Crowded living situations also increase the transmission rate of TB within the household. Patients identified to have TB need to be linked with appropriate surveillance teams and have all members of their households tested or evaluated.
We need also to be mindful of further barriers to care that exist for the impoverished population, such as the following:
Patients and families need reassurance that their interdisciplinary team members are interested in their quality of life, not quantity of life without quality. We must acknowledge a good quality of life as being free of distressing symptoms, and offer patients the ability to remain as independent in their lives and care as possible. With comprehensive assessment, we can promote patients' ability to achieve meaningful goals and take care of personal priorities before the end of their lives.
Deliberate, informed, and conscientious practical actions should be based on understanding the interdisciplinary team role and function, hospital discharge planning, patient and family assessment, and home care and hospice planning. These components are paramount to promoting a continuum of care and support for people with HIV and their families at the end-of-life.