Chapter One
The Origins of Hospice

The word hospice shares etymological roots with a number of other words, such as host, hostel, hospitality, hospitable, and hospital. Derived from the Latin word hospitium, which means guesthouse, hospice originally designated a place to rest for weary pilgrims, usually en route to and from religious sites. The word eventually became synonymous with a home for the sick or destitute and was associated with the chronically and fatally ill who often traveled to sacred shrines in search for a cure.¹

In the beginning

The history of hospice includes recorded efforts to provide special care to the sick and dying across numerous cultures for many hundreds of years. For example, in the 12th century, a statute related to the care of sick pilgrims by the Knights Hospitallers of the Order of St. John of Jerusalem stipulated that the members of the house feed and care for sick travelers “... charitably according to the ability of the house.”² Similarly, the dying poor in ancient China were offered shelter in what were known as “death houses,” and indigenous people, such as the Maori of New Zealand, traditionally gave support to tribal families after the death of a family member.¹

As was true for the delivery of most nursing care, until recent times the care of the dying was typically left to the family and the church. Religious orders sponsored and staffed shelters known as hospices, where nuns and friars took responsibility for the needs of the sick and dying. Otherwise, family members — usually the women — managed the care of loved ones with known or suspected terminal illnesses.¹

In 1879, the Irish Sisters of Charity established a hospice in Dublin devoted to the dying. In 1905, the Sisters founded St. Joseph’s Hospice of East London. In the early 1900s, St. Luke’s Hospice and the Hospice of God also opened in London.¹ At the same time, philanthropic efforts were key to the development of havens for the sick poor in municipalities worldwide, which led to a wider availability of clinics and hospitals for the delivery of care.³ As a result, people with terminal illnesses began to be cared for away from home, so much so that dying in a hospital or other facility became the norm. Research about changes in the death experience shows that the ability of medicine to address asepsis, treat infections with antibiotics, and apply the principals of surgical advances developed during World War II helped to replace acute and mortal illnesses with chronic illnesses; the time between diagnosis and death was longer. This change in the management of illness, which included the availability of more hospital beds and a wider array of clinical options, institutionalized the dying experience. Dying became an experience managed by professionals rather than shared with family members.⁴

The modern hospice movement

While patients and their families adjusted to the changes in care brought about by advances in technology and longer, more frequent hospital stays, the altered practice milieu and the suffering and alienation of patients caused professionals to question themselves and their work. In 1959, Herman Feifel, a psychiatrist affiliated with the Veterans Administration in San Francisco, published a book titled The Meaning of Death, which encouraged discussion among professionals about death and dying in the United States. The antiauthoritarian notions that arose during the 1950s and 1960s engendered questions about the preeminence of physicians and their various technologies. These notions gave rise to issues such as patients’ rights and informed consent, all of which helped to foster the development of alternatives to conventional hospital-based health care.⁴

The institutionalization of dying became a common phenomenon in the Western world after WWII. By the mid-1950s and 1960s, partly in response to this change in societal norms, Cicely Saunders, nurse turned social worker turned physician, began to develop her understanding of hospice as we know it today. She worked at St. Joseph’s Hospice in London and, while there, studied pain control and the regular, around-the-clock (ATC) use of opioids in cancer care. In addition to her help to found the modern notion of hospice, she established ATC dosage as the basic standard of pain control necessary for optimal palliative care.^1,5 In 1963, Saunders opened London’s inpatient St. Christopher’s Hospice.

During Saunders’s early work among patients with terminal illnesses, Florence Wald, dean of the Yale University School of Nursing, invited her to address medical students, nurses, social workers, and chaplains at Yale. Saunder’s presentation included before-and-after photographs of patients with the advantage of pain and symptom management. The description of her work so influenced Wald that Wald resigned her position as dean to work and study at St. Christopher’s.^1,4

In 1980, in recognition of her many medical accomplishments, Cicely Saunders was made a Dame of the British Empire.

Another early contributor to modern hospice efforts was Elisabeth Kübler-Ross, who describes the five stages of grief in her 1969 book titled On Death and Dying. For the first time, students in the medical professions had a resource that included interviews with people who either had experienced losses or were about to, and were consequently in the throes of the grieving process. In her book, Kübler-Ross illustrates the limitations of institutional care for the dying, as well as the strains such care can place on the patient, family, and medical personnel. She questions whether the needs of the dying can be met when the patient is removed from his or her home and families are allowed to visit only briefly between care routines and procedures.⁶

Kübler-Ross’s efforts to make death a more humane experience included her testimony before the United States Senate Special Committee on Aging in 1972. In her testimony she said, “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can provide families more help with home care and visiting nurses, giving the families and patients the spiritual, emotional, and financial support they need in order to facilitate the final care at home.”⁵

During the 1970s, hospice organizations became more prevalent and accessible, particularly in the United States and Canada. Well-known hospices of this vintage include The Connecticut Hospice, Inc., the first hospice in the United States; Hospice of Marin, Marin, Calif.; Palliative Care Unit at the Royal Victoria Hospital, Montreal, Canada; Support Team at St. Luke’s Hospital, New York City, N.Y.; and Church Hospital Hospice, Baltimore, Md.¹

Curative vs. palliative care

The modern hospice movement led to the development of the broader term, palliative care. Whereas hospice is categorized as end-of-life care, in addition to end-of-life care, palliative care can be offered to those with a generally terminal condition, who nonetheless might expect to live many months or years — perhaps longer.

On the other hand, the person who enters a hospice program has decided against curative therapies. For the patient with cancer, this decision often requires that chemotherapy, radiation treatments, and surgical procedures no longer occur, although such procedures may be prescribed to control pain and other symptoms.

Before hospice care, many cancer patients have received aggressive interventions that have either been effective for a time or have been less effective than expected. Similarly, the patient with a non-cancer diagnosis has usually experienced myriad treatments, medication regimens, and sometimes surgery. The patient who decides to move from curative to palliative care is frequently exhausted from his or her efforts to heal.

Curative care focuses on the aggressive treatment of illness; palliative care concentrates on pain and symptom management, along with the personal issues often associated with the knowledge that one’s life is limited. In 1993, palliative care was described as “the study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is on the quality of life.”⁷

In 2000, the American Board of Hospice and Palliative Medicine wrote that palliative medicine “... requires the comprehensive assessment and interdisciplinary team management of the physical, psychological, social, and spiritual needs of patients and their families. Palliative medicine helps the patient and family face the prospect of death assured that comfort will be a priority, values and decisions will be respected, spiritual and psychosocial needs will be addressed, practical support will be available, and opportunities will exist for growth and resolution.”⁷ The significance of this definition is two-fold: It recognizes that hospice care requires a team approach and that the patient and the family are the unit of care in hospice practice.

In Standards of Practice for Hospice Programs, the National Hospice and Palliative Care Organization (NHPCO) notes in its description of palliative care: “No specific therapy is excluded from consideration. The test of palliative care lies in the agreement between the patient, physician(s), primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms and pain, and/or an enhanced quality of life. The decision to intervene with active palliative care is based upon an ability to meet stated goals rather than affect the underlying disease.”⁵

Palliative care and hospice, as a specialty within the discipline, have at their cores a commitment to improve the health services available to those with a terminal illness, regardless of prognosis. Clinicians and other team members strive to make the care active, creative, and sensitive. To this end, many medical and nursing programs include curricula for palliative care and hospice practice, with the understanding that any serious illness may call forth the need for palliation of symptoms, pain, and spiritual distress.⁸

The goals of palliative care include “an appropriate death, a good death, a peaceful death, and a tolerable death.”⁹ These goals are achieved through pain and symp-tom management; quality psychosocial care; and attention to practical, emotional, and spiritual needs, all delivered by people who have a respectful relationship with the dying person.

Clinical Vignette

Mrs. S. is a 77-year-old woman with a recent history of ovarian cancer. Her original cancer had been successfully treated three years previously with surgery, radiation therapy, and a course of chemotherapy. One month before the hospice referral, she felt well and was able to cook for her elderly husband and their grown son.

When the hospice nurse visits Mrs. S. at home, she recognizes that Mrs. S. is still surprised about her diagnosis. She says her pain is “insignificant,” 4 on a scale of 0-10. She has been prescribed nothing for pain, anxiety, or sleeplessness. When asked, she says she doesn’t want medication that isn’t necessary. She also questions whether hospice is needed, since her pain “is not a problem.” Furthermore, she intends to return to her household routines for as long as she is able. Mrs. S. says that her physician merely mentioned hospice as a service that could help her at home when she needed it. Nonetheless, she agreed to meet with other members of the team. She has made no preparations for her death. She shares that she can expect abundant support from her pastor and other church members.

After the initial interview, the nurse recommends:

• A visit the next day from the hospice social worker, who can add to the information that the nurse has given about the role of hospice, advance directives, respite care, and support for the family. The social worker can also assess the family’s grief status and the husband’s and son’s thoughts about Mrs. S.’s care in the future.
• A consultative call with Mrs. S.’s pastor, with a view to a future joint visit.
• Nonsteroidal antiinflammatory therapy, in compliance with the World Health Or-ganization’s Pain Relief Ladder guidelines.
• Nursing visits twice a week as well as phone calls at intervals between visits to assess for pain management, symptom development, and educational needs related to agency and community resources.

For More Information

• For information about efforts to educate professionals and community members about palliative care trends, go to the Center to Advance Palliative Care at www.capc.org.
• For efforts that shape public policy on end-of-life issues, go to the Americans for Better Care of the Dying at www.abcd-caring.org. Review the contents of the link “Exchange: News from the Field,” which offers many articles and firsthand accounts about end-of-life care.
• To download the 1997 article Approaching Death: Improving Care at the End of Life, go to the Institute of Medicine website at www.iom.edu. Enter ‘approaching death’ in the Quick Search field and click Go. After you read the article, you will have a sense of the progress that has been made since the recommendations outlined in the article were first made.

Chapter Two
Hospice Nurse Case Management

The term case management came to the field of community health nursing through the social welfare literature of the 1970s. At the same time, leaders in nursing as well as pioneers of early case management began to use the term.¹

Case management in hospice

Case management in hospice has developed alongside the growth of the discipline. As defined by the Case Management Society of America (CMSA), case management is

“ ... a collaborative process that assesses, plans, implements, coordinates, monitors, and evaluates options and services to meet an individual’s needs through communication and available resources to promote quality and cost-effective outcomes.”² To learn more about nurse case management, follow the directions in “Case Management” on the next page.

In hospice practice, the case manager (CM) both coordinates and delivers care to the patient. The CM works with the hospice manager and field supervisor to ensure that all staff members implement the Medicare hospice benefit according to governmental regulations.

Overview of the team

In hospice, Medicare has designated the registered nurse as the case manager. Most hospice agencies prefer RN case managers to have a bachelor’s degree in nursing and a public health nurse certificate or one year of nursing experience. Previous home health experience is also preferred.

Part of the RN case manager’s role is to act as the patient and caregiver’s educator and advocate. The CM identifies needs and makes referrals to other disciplines accordingly. She or he is responsible for all care and coordinates all services. The CM or another RN is assigned to carry out the initial patient assessment, establish a plan of care (POC) based on the assessment and, in consultation with the patient’s physician and other members of the hospice team, prepare an inclusive care plan that describes the services, treatments, and medications to be provided. Nursing services include: 1) pain and symptom management; 2) assessment, evaluation, and observation; 3) education of patient and caregivers; 4) administration of medications; 5) treatments, such as catheterization, wound care, and intravenous therapy; and 6) coordination of other hospice providers, particularly the certified home health aide (CHHA). The hospice nurse CM also coordinates the POC; regularly communicates with the patient’s physician and the hospice medical director; manages the POC documentation, including the initial hospice certification and subsequent recertification documents; and, on behalf of the patient, interacts as needed with the insurance carrier. In addition, the hospice CM attends all interdisciplinary team (IDT) meetings, also known as interdisciplinary group meetings. IDT meetings are discussed in Chapter Three. For a summary of the hospice nurse CM responsibilities, see Table 1.

Table 1

Summary of Hospice Nurse CM Responsibilities⁵

• Initiate or delegate admission of patients
• Obtain or coordinate insurance pre-authorization when needed
• Develop POC with other IDT members
• Establish visit schedule
• Review frequency and duration of visits
• Obtain physician’s orders and collaborate with him or her to meet patient’s needs
• Supervise or delegate CHHA supervision
• Document patient care outcomes
• Provide directions for care to another nurse in the absence of the CM
• Obtain and report lab and other test results
• Write recertification when needed
• Revise POC according to changes in patient condition
• Attend all IDT meetings
• Participate in agency committee work
• Document CM activities

As part of the government’s home health program, hospice must follow the dictates of Medicare, which require that a physician order the services for a patient and that he or she assume oversight of the case.³ Other major hospice disciplines include the social worker (SW), CHHA, chaplain, bereavement staff, and volunteers. Furthermore, the occupational therapist (OT); physical therapist (PT); speech therapist (ST); registered dietician (RD); and certified wound, ostomy, and continence nurse (CWOCN) may participate in the plan of care. Hospices also make every effort to include a pharmacist consultant on the team. Often referred to as providers, each member of the team has a crucial role in the goals of the POC. Hospice agencies organize and deploy staff members based on their understanding of the needs of the patients that can be served by each discipline.

A discussion follows for each major discipline in hospice that describes the function of the team and the responsibility of the nurse CM.

Nursing

In hospice, nursing services are provided by an RN or, under an RN’s supervision, a licensed vocational nurse (LVN) may deliver care. We have discussed the RN’s credentials. The LVN in hospice is typically required to have one year of experience beyond his or her training.

Along with the case manager, other RNs who do not serve as case managers may initiate admissions, plan revisits, and coordinate care. Organizations may refer to these nurses as affiliates, team nurses, or revisit nurses. Hospices may also employ LVNs. The scope of practice for the LVN, as defined by state regulations, may be confined to simple revisits and tasks that the CM delegates.

The RN supervises the CHHA, who gives personal care and other services to support the patient and family. The RN assesses the patient’s need for other skilled services and then coordinates those services.

Advanced practice and specialty nurses have a place on the hospice team, usually in a consultative role. For example, Medicare has determined that the nurse practitioner (NP) can serve as the patient’s attending physician in hospice⁴ and, based on the prescriptive guidelines in the state, can perform many of the functions formerly restricted to the physician. RNs with special certificates, such as the CWOCN, the certified diabetes educator, and the clinical nurse specialist may be employees of or contract with hospice. Other specialists may supply respiratory care, psychiatric consultation, pediatric services, and IV therapy. Later, you will learn about the role of specialists who work with the hospice team.

Coordination of the care plan involves participation from others inside and outside the agency. The case manager can make referrals to other community agencies but is also free to rely on social work staff for advice about outside referrals when needed. Internal coordination activities include regular conferences with others on the team, consultations with direct-care providers, documentation of coordination via communication and other forms of narrative notes, and the organization and oversight of case conferences.

Social work

All hospice patients receive social work services. The hospice SW is usually prepared at the master’s level (MSW), but in some states the SW with a bachelor’s degree can practice under the supervision of the MSW or the licensed clinical social worker.

The SW collaborates with the CM in the patient’s psychosocial assessment. She or he is an expert in financial benefits available to the hospice patient, which include locally available grants and community services with a hospice focus.

The SW helps the family determine which care alternatives in hospice are acceptable, including hired caregiving and skilled nursing placement. Skills that the social work staff can offer the family include ways to cope with terminal illness and help to address high-risk behaviors, circumstances that endanger the patient, or the family’s mental health. The SW is often relied on for support, not only within the family but also among members of the team. The social worker teaches patients and family members to manage the anticipatory grief associated with dying, as well as to cope with other emotions of loss, such as anger, fear, sadness, regret, betrayal, and remorse. Finally, the social worker is instrumental in helping families to begin to heal after the death of their loved one.

Certified home health aide

The CHHA works under the supervision of the hospice CM and other RNs whom she or he designates. The CHHA provides direct personal care and related services to support the patient and complement treatment. Because the CHHA must be strictly supervised, regulations require that the POC specify each CHHA activity. The CM or one of the RNs on the team supervises the CHHA at a minimum of every 14 days.³

Personal care includes all ADLs. The CHHA also changes linens, and performs light housekeeping, meal preparation, and laundry in the home. The CHHA must always provide a personal service during each visit. She or he is often scheduled to visit two or three times a week, but may visit daily as the patient’s death approaches.

Since the CHHA is often the first to know the patient and family’s needs, the CM is wise to include the CHHA in care planning. The intimate nature of the service that the CHHA provides promotes a relationship of trust, which can help comfort the patient and achieve the hospice goals.

Chaplain

The chaplain assesses the hospice patient’s need for religious or spiritual services, including his or her feelings of despair, suffering, guilt, and forgiveness. The chaplain is in a position to hear the patient’s expressions of anger, anxiety, frustration, and disappointment without judgment. This service can provide comfort. Regardless of the chaplain’s religious affiliation, she or he provides spiritual support and, when requested, guidance of a nondenominational nature. The chaplain may also help to arrange funeral or memorial services. Families sometimes ask the hospice chaplain to conduct a service for the patient, especially when the patient, the chaplain, and the family have developed a bond. The chaplain is also in a position to bridge relationships between the patient, family, and clergy in the community. Finally, the hospice chaplain is often called upon to help direct the spiritual care of other hospice employees during work hours and is frequently able to model behaviors and teach other team members how to approach the patient about the essential qualities of spiritual care.

We live in a largely secular society, more informed by the details of political and economic life than by the demands of spiritual or religious well-being. Many hospice patients, regardless of how they have lived, often want spiritual guidance in the final months, weeks, and days of their lives.

Bereavement staff

On admission, the SW does a grief assessment, which catalogues the estimated needs among family members for follow-up care after the death of the hospice patient. The bereavement group then provides free services to survivors for up to one year thereafter. Furthermore, many bereavement programs offer services to the community when space, time, and resources permit — often free of charge.

The focus of bereavement services is on the response of the survivor to loss. Each hospice program adopts or develops its own approach to grief management; conceptual frameworks are as varied in grief therapy as in nursing theory. The unifying aspect of each model, however, is related to the survivor’s grief reactions and the subsequent need to find helpful ways to give advice.

Volunteer

The hospice volunteer frequently finds his or her way into a program after a personal experience with death. For potential volunteers motivated by a recent death, hospices usually impose a time period before the volunteer can begin training. A wait of six months to one year is common.

After a volunteer has been trained, he or she can provide personal companionship and attention other than medical care to the patient. This attention may include ADLs; respite to the household caregivers, when one or more of them leaves the house; and help with errands. A volunteer coordinator, generally a hospice employee, oversees the group, maintains records of the group’s activities and training; and acts as a liaison between the group and the IDT. Volunteers are invariably an asset to the hospice, and one that Medicare recognized from the outset. Medicare has stipulated that volunteers supply “5% of the total patient care hours of all paid hospice employees and contract staff”³, which is a significant contribution.

For More Information

To learn about case management, the professional opportunities and benefits available to case managers, and case management events, to to the CMSA web portal at www.cmsa.org.

Other disciplines

Consultations with other disciplines, usually available from the home health department, are sometimes necessary for the safety and good care of the hospice patient. Medicare considers it to be the hospice program’s responsibility to offer such services, when needed.

The OT can provide guidelines to a family member or personal caregiver about how to help the dependent patient with ADLs. The OT can assess the special durable medical equipment needs of a patient with Alzheimer’s disease or an amputation, or any condition in which the patient has developed upper-body weakness. The OT frequently helps caregivers in the home learn how to assist the patient with ADLs safely and effectively.

Hospice staff members may recommend consultation from a PT when the patient demonstrates overall reduced strength, especially when the loss of strength poses a safety risk. The PT may be able to teach ways to conserve energy; preserve functional mobility, such as positioning in bed; transfer between the bed and a chair; or use a wheelchair. The PT can help a caregiver learn how to move, position, or transfer the patient, as well as provide instructions for range-of-motion exercises.

The SW may be asked to evaluate the patient with new or altered cognition conditions or problems with swallowing. The patient with amyotrophic lateral sclerosis, terminal head-and-neck cancer, Alzheimer’s disease, or end-stage Parkinson’s disease may benefit from such efforts.

The RD may be asked to consult on a hospice patient to recommend ways to manage a chronic disease or a nutritional problem that coincides with the terminal illness. The RD can evaluate the patient’s intake and caloric requirements for comfort and quality of life, as well as nutrition related to wound prevention or healing.

The CM and the plan of care

The nurse CM coordinates total care among all the hospice disciplines from the time the patient elects to use the hospice benefit until death or discharge. The nurse CM works with the patient, the primary caregiver (CGR), and the IDT to develop the POC. Documentation of case coordination must be done whenever the patient’s status, interventions, or prognosis change.

The POC must clearly describe the frequency and duration of visits; all orders from physicians, including treatment orders, orders for discipline-specific visits, and medications; communication between disciplines, during IDT meetings and between the meetings; and the patient and family’s response to the patient’s care.

Finally, the hospice nurse CM prepares for death or discharge of the patient and documents whether the POC goals have been met. This is important language in relation to Medicare guidelines, for Medicare repeatedly stresses the need to evaluate goals and monitor outcomes, even when the expected outcome is the patient’s death. The CM reviews the goals of the POC at the IDT meeting during which the team discusses the patient’s death or discharge from the program.

Eligibility for services

Coverage for hospice services is available to people with a terminal illness and a prognosis of six months or less, as long as the patient’s illness follows its expected course and who are eligible for Medicare, Part A.⁴ The patient with Medicaid coverage (Medi-Cal in California) or other third-party insurance, such as Blue Cross or Kaiser, may also receive hospice services, based on the insurance plan’s scope of coverage. (You will learn about the limitations and regulations related to eligibility, the hospice benefit, and covered services in Chapter Four.) Because Medicare reimbursement established the standard for eligibility in hospice, other payers have developed programs in line with federal regulations where possible.

In addition to health condition requirements, Medicare has several unequivocal expectations, all of which fall to agency staff to verify. In total, these criteria make up Medicare eligibility for hospice services. Unless the patient and the agency meet these criteria, the patient cannot receive services without jeopardizing the integrity of the program and the program cannot be reimbursed for services rendered. See Table 2 for an overview of basic Medicare hospice criteria.

Table 2

Medicare Criteria for Hospice Services⁴

• The patient must be entitled to Medicare, Part A, benefits.
• The patient must have been certified as terminally ill, with “a medical prognosis of six months or less”⁶ (Part 418, Section 418.22 [b]), “based on the physician or medical director’s clinical judgment about the normal course of the individual’s illness”⁷ (from Benefits and Protection Act, sec. 322, quoted in HCFA Transmittal AB-01-09, 1/24/01).
• Two physicians must supply the initial certification of terminal illness. These physicians must include the patient’s attending physician and either the hospice medical director or the physician representative on the IDT.
• The agency must be a participant in the Medicare program.

For More Information

You can find many grief-related resources on the Internet. Try the following sites for general and adult-oriented information:

• www.grief.net
• www.growthhouse.org

Information specific to grieving children is available at these sites:

• www.dougy.org
• www.fernside.org

For current and complete CMS information:

• www.medicare.gov

Clinical Vignette

Mr. D. is an 86-year-old man whose diagnoses include end-stage cardiovascular disease (primary diagnosis), renal failure, and three recurrent UTIs in the last 12 months. The nurse CM compares his primary diagnosis to the “Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases.”⁶ She finds that while Mr. D. does not have documented evidence of the New York Heart Association, Class IV, classification, he meets the diagnostic criteria. His ejection fraction is 15%, 5% lower than the guidelines require, and although he has been on and continues to take diuretics and vaso-dilators, his symptoms are both persistent and increasingly debilitating. Until recently he has been able to walk from his bed to the dining room for meals, but he can no longer transfer to a bedside chair without the assistance of two people and continuous oxygen.

Mr. D. has a large extended family, which has committed to 24-hour a day care for him for as long as necessary. During his care review with Mr. D.’s daughter, the nurse CM learns that she, in particular, is strained by his requirements. Other family members mean well, but they leave most decisions to her. In addition to the daytime hours she spends with him, he often asks for her at night, even though other family members are available to help him. Another worry is his recent repeated request to see a priest, even though he has not attended services for many years. Mr. D.’s daughter admits, “I could use more help, not only for myself but for the sake of my family and my father.”

At the end of the visit, the nurse CM adds the instructions below to Mr. D.’s POC:

• CHHA needed for personal services to begin as soon as possible. The CHHA will visit three times a week to give a bed bath and hair and nail care, and assist with a transfer to the bedside chair. The nurse CM orders linens to be changed weekly and as needed when soiled.
• Request a pastoral telephone call to the household, in anticipation of a pastoral visit to follow.
• Request a volunteer for family respite and companionship.
• After consultation with the social worker, schedule a family conference, to include the primary CGR and other family members as indicated, as well as the social worker, chaplain, and volunteer coordinator or volunteer.

Chapter Three
Hospice Practice

Nurses enter hospice for any number of reasons. Some have had a personal experience with a gravely ill person. Others become interested in the philosophy of hospice, perhaps to promote aspects of the principles behind the work through their own good practice. Still others may be drawn by the challenges of pain and symptom management.

One study listed “profound loss and grief before becoming a hospice nurse, endurance and resilience, hospice nursing as a means of transformation, and a life pervaded by spirituality” as the causal life patterns among the hopsice nurses studied.¹ Almost all nurses come to hospice with experience in at least one specialty or subspecialty of general nursing, and their skills from former practice invariably prove to be assets to the nurse, patient, and hospice program.

You learned in Chapter Two about the members of the hospice team and the role of the nurse case manager on the team. You probably recall that the nurse CM is both a liaison and a leader. In fact nurses, whether case managers or team nurses, have important contributions to make to the work of the hospice team, in part because, from among the professional staff, the nurse typically spends the most time with the hospice patient and family.

Leadership expectations that arise from the structure of the hospice require a willingness to be visible, accountable, and available. As is true in home health, most hospice programs require the nurse to have acute care or skilled nursing care experience. Some hospices also stipulate that nurses have a home health or case management background.

The National Hospice and Palliative Care Organization (NHPCO) guidelines for nursing services in hospice and palliative care practice include roles in assessment; education; technical practice, such as pain and symptom management; and psychospiritual support.² NHPCO further recommends baccalaureate preparation for entry into hospice practice although the burden to meet this standard has been generally unsupportable in hospice programs.

In addition to the opportunity to participate in the last phase of a patient’s life, the hospice nurse can look forward to the benefits of work in the home health arena. While the nurse must learn new skills, his or her previously honed skills will be used and appreciated. While many hospice programs focus on the needs of adult and elderly patients, pediatric hospice programs exist, as do programs for underserved populations.

Other hospice practice-related considerations include the need for nurses to know new and established medications; palliative treatments in oncology and noncancer terminal illnesses; skin, wound, and continence care technologies; the care of patients with tubes, such as J-tubes, gastrostomy tubes, and home chest tubes; respiratory treatments; IV line insertion and management; and blood withdrawal in the home setting. The hospice nurse also teaches patients and caregivers about disease processes, nutrition, infection control, and safety management and advises them about mobility-related therapies. The expectations of technical expertise are significant, but expertise in communicating with patients, families, and other hospice team members is also essential for hospice RNs.

Many hospice agencies stand alone, without the support of or affiliation with a hospital or a home health agency. Under such circumstances, home care specialty nurses cannot be made available to the patient with a terminal illness. The patient may require hospitalization or further treatment from the physician to have his or her needs met. Hospices that function autonomously typically develop working relationships with their respective community resources to ensure high-quality care.

Communication and the IDT

One area of hospice in which good communication skills affect patient care directly is in the interdisciplinary team (IDT) meeting. IDT is a forum to share information about patients and care, as well as a sounding board and a reality check for staff concerns.

Required by federal and state regulations³, the IDT helps to create and reflects the character of each hospice, which is largely a matter of agency prerogative. Some hospices hold short sessions at the beginning or end of the meeting that honor the agency’s patients, the spiritual elements of patient and staff groups, and the forces that protect and support the work to administer and receive hospice services.

At a minimum, Medicare requires that an MD, RN, social worker, and pastoral representative participate in the IDT. The IDT updates each patient’s plan of care (POC) and establishes operational and patient-care policies. Meetings must occur regularly, and an RN must coordinate the implementation of each patient’s POC. Given the amount and frequency of communication, good communication skills are an asset during IDT, if not a relief.

Hospice, other RN specialties

Hospice nursing is a specialty area of practice. Administrators and academics recognize that the nursing skills needed to serve the hospice patient require a special body of knowledge; knowledge that is discreet and complex.⁴ Hospice nurses enter into a lengthy and dedicated orientation process before they begin independent practice, and many choose to become certified in hospice practice later in their careers. You will learn more about credentialing opportunities later in this chapter.

In the large categories of practice known as home health and hospice, agencies ensure the competency of their staff but are under no regulatory obligation to employ specialty nurses.

For example, to determine the best mix of nurses, an agency conducts a needs assessment in the community; it decides what its patients will require and the specialists it can attract and support.⁵

Certified diabetes educator (CDE)

The hospice nurse might need to call on a CDE nurse specialist to help develop a POC that includes aspects of diabetes care for a terminally ill patient. The role of the nurse

specialist is to serve patients in the community in a cost-effective and culturally sensitive manner. In fact, the hospice may have an internal policy that stipulates the use of a CDE under specific circumstances, such as those listed below:

• For the patient newly diagnosed with diabetes
• When diabetes is considered “out of control”
• For any patient with diabetes, newly on insulin
• For the patient who requires oral hypoglycemic agents
• For the patient with complex educational needs

The specialist generally makes a visit or two for consultative purposes; the visits are covered under the hospice benefit. Home health does not bill for the use of its specialist staff.

Certified wound, ostomy, and continence nurse (CWOCN)

One consult the hospice nurse CM might initiate is for a patient with a terminal illness who has developed or is at significant risk to develop a wound. In that case, the insights and recommendations of a CWOCN, also known as a certified enterostomal therapy nurse (CETN) and often called the ET nurse, helps maintain the patient with wounds safely and comfortably at home. One of the most important roles of the CWOCN is to educate staff members and the patient about the principles and practice of wound healing and management. The CWOCN might consult in the following circumstances:

• Daily or more frequent wound care
• Drains or tubes
• Fistulas
• Infected wounds
• Multiple wounds
• New ostomy
• Newly acquired or history of incontinence
• Old ostomy with changes
• Rash or skin problems

The management for most of these conditions is costly, and poor management can cause the patient to suffer, the very condition that hospice professionals seek to prevent. The hospice program could also expect the CWOCN’s expertise to minimize wasted supplies, inappropriate treatments, and extra nursing visits in the course of the case.

For example, the hospice nurse CM may request consultation with the CWOCN when the patient has a new ostomy or altered skin integrity. In the first example, the CWOCN might assess the educational needs of the patient and family and advise the hospice nurse about ways to manage the ostomy. In the second example, the wound specialist might offer recommendations for cost-effective treatment that also promotes comfort — both ends that are always consistent with the hospice POC.

Psychiatric nurse specialist

Terminal illness can exacerbate mental illness in the patient with a history of a psychiatric disorder. To request a specialty consult from a psychiatric nurse can make the difference between keeping a patient at home and requiring institutionalization, precisely what the hospice philosophy of care cautions against.⁶

The psychiatric nurse is often called in to consult under the following conditions:

• A new psychiatric diagnosis
• In the presence of alcohol or drug abuse
• The addition of a new psychotropic medication
• When the patient’s medical condition is affected by mental deterioration

Furthermore, the psychiatric nurse can work with the social work staff to help the patient who expresses suicidal thoughts or when the patient stops his or her psychotropic medication or develops a dramatic change in mood.

As you may know, some agencies rely on other specialists, such as cardiovascular, gerontology, rehabilitation, infection control, intravenous therapy, maternal-child health, and women’s health, to name a few. Agencies are free to recognize specialties according to agency-specific criteria. As long as the agency honestly represents its staff, the agency may use staff credentials to advertise its corporate profile. It is possible that all of these specialists could play a role in the care of a hospice patient.

Competence in hospice care

National, regional, state, and community expectations help to establish how agencies assess staff competence, but each agency is free to determine the method and frequency of assessment. Agencies often look to their state and national organizations for consensus in the adoption of competence standards. Along with state and federal regulatory bodies, larger, independent organizations, such as the Joint Commission, judge the competence of the agency as a whole to operate in the community.

See Table 1 for a list of competencies used in some hospice departments or agencies.

Table One

Examples of Hospice Nursing Competencies

• Annual medication and safety training
• Nursing clinical skills inventory
• Field observation evaluation: start of care or evaluation visit
• Field observation evaluation: revisit
• Safety needle competency
• Peripheral blood draw competency
• Pulse oximeter competency
• Glucose meter competency
• ProTime competency
• Assessment and support of the terminal patient
• Interdisciplinary team competency
• Rights and ethics competency
• Conditions of participation competency
• Cultural diversity awareness competency
• Pain and symptom management competency

Source: Compiled by the author from multiple sources.

The home hospice bag

Skilled use of the home nursing bag should be supported by the hospice department or agency. Each agency develops a policy and a procedure to manage the bag. Some agencies distribute the bag with all of its contents. Other agencies expect the nurse to buy a bag and care for it according to agency guidelines; the agency supplies the contents. The primary requirement for the agency is simply to support the practice through consistent, logical policy and procedure, and ensure that all staff members have an orientation to both.

In other published examples, the following information varies, but the principles remain the same.^7,8

Contents of the bag

The purpose of the bag is to give the nurse an area in the patient’s home or personal space that will prevent contamination of patient care equipment. The bag contains a clean work area and an area for items considered unclean, such as those the nurse takes in and out of the bag frequently.

The bag includes discipline-specific items the nurse might use daily, as well as items chargeable to the patient, such as catheter and irrigation supplies. It also contains items that the agency provides, such as antiseptic wipes for blood withdrawal and to clean equipment. Part of the nurse’s responsibility is to stock bag supplies in quantities consistent with the agency’s policy. After a day’s visits, the nurse adds equipment to the bag for the next day.

Equipment is usually obtained through a central supply area, such as a locked and monitored supply room at the agency or the central supply department of a hospital, when the agency and hospital are affiliated. The supplies listed below are basic to the nursing bag, and they also may be useful to all members of the team.

• Assessment equipment (measuring tools, sphygmomanometer, stethoscope, thermometers)
• Disposable supplies (alcohol swabs, applicators, Band-Aids, dressings, lubricant jelly, plastic aprons, scissors, sterile and nonsterile gloves, tape, tongue blades)
• Hand washing supplies (antiseptic waterless gel, soap, paper towels)

The bag is managed by “bag technique,” a method to ensure asepsis. Bag technique is usually described in a simple, procedure-oriented manner. The following description could be for a first visit by a newly hired hospice nurse during orientation.

Bag technique

• Place the bag in a clean area on a newspaper or paper towel to avoid contamination of the outside of the bag. Do not place the bag on over-stuffed furniture or at a level where a curious child or pet might disturb it.
• Use a bag or newspaper to dispose of contaminated materials.
• Use agency soap and towels to wash and dry your hands.
• Remove equipment needed for the visit and place it on a paper towel.
• Use standard precautions throughout the visit. Instruct the caregiver, family, and patient about the need to wash their hands to prevent contamination and infection, and the safe disposal of equipment and supplies.
• At the end of the visit, clean used equipment and wash your hands before you return the equipment to the bag. Close the bag and maintain it in a clean area until you leave the home.

The bag should be cleaned monthly or when it becomes soiled. An often-recommended solution to clean the bag is a one-part bleach to ten-parts water mixture, readily and inexpensively prepared. When an infectious disease is present in the home, leave the bag in the car, and take in only those items that can be discarded or left with the patient after use. See Table 2 for a sample list of nursing bag contents.

Table 2

Sample Contents of the Hospice Nursing Bag

• Alcohol and skin prep wipes
• Betadine, hydrogen peroxide, and sterile water
• Blood pressure cuff and stethoscope
• Catheter supplies: catheter plug, catheter tip syringe, catheterization tray, irrigation tray
• Digital thermometer and disposable sleeves
• Disposable bags, garments, and surgical/prep fields
• Disposable forceps and scissors
• Dressing pack: 2x2s, 4x4s
• Gloves, nonsterile and sterile
• Hand washing supplies
• Measuring tape
• Paper bags and newspapers
• Pen light
• Personal protective equipment, such as goggles, masks, and mouth barriers
• Sterile applicators
• Tape
• Tongue blades

Source: Compiled by the author from multiple sources.

Lab coat etiquette

The agency determines whether the nurse wears a lab coat. Few agencies require a uniform, which is one reason that agencies commonly expect professional attire, such as a lab coat. Care of the coat is generally a matter of policy; most staff members launder their lab coats at least once a week.

Advanced practice

In some hospice agencies, the clinical nurse specialist (CNS) and the nurse practitioner (NP) are important adjuncts to the team. The CNS serves as a role model and educator. Visible and respected for her or his ability, the CNS has the influence required to handle a classroom of professional staff. Management and staff often view the CNS as a change agent, one who understands the patient’s health needs and the needs of the family. Through position statements and lobbyists, the Hospice and Palliative Nurses Association (HPNA) supports the expanded role of the CNS in hospice.⁹

The NP can develop and sign the POC, and regulations allow the agency to bill for NP services under Medicare, Part B. Although additional legislative clarification for the role of NPs in hospice is pending, Medicare encourages hospices to use NPs.¹⁰

Opportunities for certification

The nurse who has or would like to have certification as a specialist may be able to achieve on-the-job recognition for the extra work that certification demands. Each certifying body has developed standards for certification based on the judgment of the body’s larger professional community and input from membership. Typically, the hospice nurse seeks acknowledgement through certification by the HPNA.

For More Information

To learn more about case management and hospice certification as well as educational offerings, contact the following organizations:

American Nurses Credentialing Center
8515 Georgia Ave, Suite 400
Silver Spring, MD 20910-3492
(800) 284-2378
www.nursingworld.org/ANCC

Hospice and Palliative Nurses Association
One Penn Center West
Suite 229
Pittsburg, PA 15276
Phone: (412) 787-9301
Fax: (412) 787-9305
www.hpna.org

Clinical Vignette

Ms. W., age 33, has terminal pancreatic cancer. She is the mother of two young children and has told the hospice team that her focus is to remain alive as long as possible so that her children will remember her. Her pain is well controlled; through the efforts of her husband, friends, and siblings and the coordination of the team by the nurse CM, Ms. W. has been able to spend time with and care for her children. Recently, however, because of nearly constant nausea, her appetite has diminished; she has lost strength and weight and has become confined to bed.

In the past, Ms. W. refused a hospital bed, or any other equipment that suggested illness, because she wanted to protect her children from her decline. In the interval between the nurse CM’s twice weekly visits, Ms. W. has developed several pressure sores, at least one of which is open and moist. She has also experienced urinary and fecal incontinence. During assessment, the nurse CM finds that Ms. W.’s wishes about her care have not changed although she will consider a hospital bed if it can be placed in her bedroom, where she says it will be less conspicuous. She remains alert but reserved — more so than when the nurse last visited. She refused the last social work visit and has consistently refused pastoral or volunteer visits.

At the end of the visit, the nurse makes the arrangements listed below:

• Consults with the home health CWOCN, who recommends barrier cream to protect against further breakdown secondary to incontinence; hydrocolloid or enzymatic dressings, depending on the staging of wounds; and advises the use of a pressure relief mattress.
• Contacts Ms. W.’s insurance company CM to explore coverage options because of changes in her condition.
• Calls the agency-contracted durable medical equipment company for a fully electric hospital bed, which includes a pressure relief overlay.
• Meets with Ms. W.’s social worker and the hospice supervisor before the IDT (scheduled four days hence) to discuss case management approaches for her care.

Chapter Four
The Medicare Hospice Benefit

In 1979, the Health Care Financing Administration, now known as the Centers for Medicare and Medicaid Services (CMS), organized demonstration projects at 26 hospices to test the feasibility of hospice services. Soon thereafter, the Joint Commission on Accreditation of Healthcare Organizations developed standards for hospice accreditation. In the early 1980s, Congress made a commitment to create a Medicare hospice benefit, and by 1986 the Medicare hospice benefit (MHB) was a permanent entitlement for eligible citizens.¹ At the same time, the government gave states the option to include hospice benefits in their Medicaid programs.

The effect of government support on the fledgling hospice movement cannot be overstated. Based on congressional review, reimbursement rates have been periodically increased. In 1989, for example, one study from the General Accounting Office found that only 35% of eligible hospices were Medicare-certified, which limits the number of beneficiaries under the Medicare benefit. The study noted numerous reasons, one of which was poor reimbursement rates. As a result, the Medicare hospice reimbursement rate was increased, and future increases were projected under the Omnibus Budget Reconciliation Act of 1989 (OBRA-‘89).¹

By 1993, veterans had become eligible for hospice care through military insurance coverage, hospice coverage for Native Americans was under consideration, and nearly 1,300 hospices were in the Medicare program. The Balanced Budget Act of 1997 brought changes, some welcome and some not. Beneficiary certification of hospice eligibility became more flexible. Until 1997, hospice patients could expect to receive care for two 90-day and two 60-day periods while the Balanced Budget Act called for two 90-day and an unlimited number of 60-day periods of eligible care. However, the Balanced Budget Act cut reimbursement rates by more than 4%, despite studies that showed hospice care to be cost effective.¹

In 1999 and 2000, Medicare increased hospice rates. Studies continue to underscore the efficacy of hospice care, both from the standpoint of hospice benefit recipients and CHAMPUS, Medicaid, Medicare, and private third-party insurers. Nonetheless, hospice organizations face many challenges, some of which are discussed in this and later chapters.

The MHB

Based on original precepts, hospice is a coordinated program that provides palliative care to terminally ill patients, their families, and significant others 24 hours a day, seven days a week. Services include comprehensive, interdisciplinary, medically directed case management during the last stages of illness, the dying process, and bereavement. With the help of a team, which typically consists of patients, families, health care professionals, bereavement and spiritual experts, and trained volunteers, hospice care seeks to treat the whole patient in his or her physical, psychological, and spiritual realms.² See Table 1 for a list of hospice program characteristics.

Table 1

Characteristics of Hospice Programs

• Bereavement services are available as needed.
• Care is both interdisciplinary and multidisciplinary.
• Care is physician-directed.
• Care is provided in the home and inpatient facilities.
• Hospice affirms life and neither hastens nor postpones death.
• Hospice treats the whole person.
• Hospice volunteers are active contributors to the team.
• Patient and family form the unit of care.
• Services are available 24 hours a day, 7 days a week.
• The focus of treatment is pain and symptom management.
• The program recognizes death as a natural part of life.

Source: Developed from various resources, including those at www.nhpco.org.

Medicare eligibility

The MHB depends on eligibility criteria. First, the patient’s physician and the hospice medical director must certify that the patient is terminally ill with a life expectancy of six months or less. Second, the patient must choose to receive hospice care instead of curative treatments, and third, he or she must enroll in a Medicare-approved hospice program.

All three eligibility criteria must be documented. The two physicians sign a certificate of terminal illness, which is a permanent part of the patient’s record. The patient signs a document that states he or she has elected the MHB; the hospice receives, maintains, and displays a certificate that allows the agency to participate in the Medicare hospice program.

A terminal status determination is a medical matter that the hospice team works together to achieve. Life expectancy statistics from a diagnostic perspective vary nationwide, and many agencies maintain their own statistics, patient by patient or by diagnostic groups. Medicare regulations enjoin the hospice medical director and the patient’s attending physician to determine the patient’s terminal diagnosis to the best of their combined abilities. The review of the patient by the interdisciplinary team (IDT) substantiates his or her status; otherwise, the patient must be discharged from the hospice program.

Medicare eligibility is crucial to the MHB. Medicare has two parts: Part A and Part B. At the time of this writing, Medicare Part A is the portion of the benefit applied to hospice, among other health care services. Thus, the patient with Medicare who wants hospice services must be eligible for Part A. The patient is eligible if he or she — or a spouse — worked for at least 10 years in Medicare-covered employment; is 65 years old; is a citizen or permanent resident of the United States; or is younger than 65 with a certified disability or end-stage renal disease. See Table 2 for a list of considerations related to the Medicare card and coverage.

Table 2

The Medicare Card

• To validate Medicare eligibility, hospice staff members ask the patient for the Medicare card or “the red, white, and
• blue card.”
• Whether the patient has both Parts A and B will be indicated on the front of the card.
• Some agencies require a photocopy of the Medicare card. Others use a form with questions about the patient’s Medicare status. For the latter, it is essential that staff copies information from the patient’s card exactly as it appears.
• The primary information points on the card include the:
• Effective date of medical insurance (Medicare will not pay Part B benefits for
• Effective date of hospital insurance (Medicare will not pay Part A benefits for services rendered before the date on the card.)
• Patient’s HIB number, which has a letter suffix as well as numbers for identification
• Patient’s name
• Patient’s sex

Source: Developed by the author.

After the patient’s Medicare hospice benefits are confirmed, the patient signs a hospice benefit election statement, which waives other Medicare benefits, such as those for curative treatments. The benefit election statement also assures patients that they may, at any time, revoke the hospice benefit and return to regular Medicare coverage. The statement and supportive educational material make clear that patients will continue to be entitled to care for any condition unrelated to their terminal diagnoses. Their signature on the statement acknowledges that they have been fully apprised of their rights related to their Medicare coverage.

MHB mechanics

Upon the admission of the patient to hospice, the patient’s physician and hospice medical director must agree that the terminal illness is certifiably accurate. This occurs through a verbal certificate of terminal illness (CTI), which is considered part of the documentation that must take place within two days of the start of care. The verbal CTI is followed by a written order, which delineates the patient’s terminal illness within eight days of the start of care. The hospice medical director and the patient’s attending physician are required to sign the CTI for the first benefit period; for subsequent periods, only the medical director’s signature is required.³

In the past decade, benefit periods have been revised so that now the initial two benefit periods are 90 days each, followed by an unlimited number of 60-day benefit periods. The patient’s condition must be evaluated fully before the end of each benefit period, an evaluation that includes a new CTI. The hospice medical director signs each new CTI. In addition to the CTI, the hospice IDT, with input from the patient, develops a plan of care (POC); the patient’s attending or primary physician also approves the POC.

In Chapter Three you learned about the disciplines on the hospice team. These disciplines provide core services: medical, nursing, spiritual counseling, and social work. All Medicare-certified hospices must provide the bulk of core services through their employees. These services cannot be hired solely on a contractual basis, a prohibition that fosters continuity of care and an investment in the welfare of the hospice program.³

The MHB also makes drugs and biologicals (OTC remedies and herbals) for pain and symptom management available to patients, as well as medications related to their terminal diagnoses. Specific kinds of durable medical equipment (DME) must be available through the hospice program. The Medicare-certified hospice agency supplies these services without charge to the patient; instead, Medicare pays the program a fixed per diem, or daily rate, for each Medicare-eligible patient receiving care. The amount paid is for salaries, equipment, medicines, and treatments.³

Four levels of hospice care

The MHB is structured and reimbursed based on four levels of care: continuous home care, general inpatient care, respite care, and routine home care. Most care is delivered under routine home care, for which patients receive intermittent visits from a nurse, social worker, and others, based on the POC. A nurse case manager coordinates the POC, and patients receive visits based on the need for services. Respite care allows a patient to go to a residential care facility for up to five days; this typically provides relief to caregivers. Continuous home care is provided during crisises, often to address the patient’s palliative-care needs or to manage other medical symptoms. Under the continuous care benefit, nursing care must be given during 51% of the hours of care for at least eight hours in a 24-hour period. This is always a short-term option in hospice, as is general inpatient care, which is delivered in a hospital or skilled nursing facility (SNF), usually for unpredictably difficult pain and symptom management that cannot be achieved at a home. Medicare reimburses for continuous care, inpatient care, respite care, and routine home care, based on regional differences in cost of living and inflation.³

Medicaid hospice benefits

Under CMS, Medicaid hospice services are optional for each state. If a state chooses to offer Medicaid coverage, the regulations about care and rules for reimbursement reflect those of the MHB. The hospice program that serves a Medicaid beneficiary must hold Medicare certification and operate according to the Conditions of Participation (CoPs). Medicaid recognizes Medicare’s four levels of care and, similar to Medicare, acknowledges that a patient may reside in his or her own home or in a SNF. Finally, much like Medicare, the hospice benefit periods under Medicaid are generally two 90-day periods, followed by a 30-day period, and then unlimited duration.

One notable difference between Medicare and Medicaid coverage is that the Omnibus Budget Reconciliation Act of 1990 (OBRA-‘90), which modified the Medicaid statute for hospice services, changed coverage for the eligible person who needed what Medicare would consider to be duplicative services. In other words, under Medicaid, the patient does not waive the right to Medicaid payment for services other than those described under the Medicaid hospice benefit. OBRA-‘90 allows the patient to receive payment for Medicaid services related to the treatment of the terminal condition and other medical services that would be equivalent to or duplicative of hospice care as long as the services are not covered under the Medicare hospice program.⁵

To review Medicaid reimbursement rates, go to www.cms.hhs.gov/center/hospice.asp.

Third party insurance hospice benefits

As is the nature of indemnity or private insurance, third party insurers develop hospice benefits according to their internal policies. Therefore, few generalizations can be made about private hospice coverage. However, many insurers follow the spirit if not the letter of the MHB; they recognize the need to cover a patient in his or her home, and provide medication benefits, DME, and many of the professional services typically available in hospice care.

Changes in the MHB

In May 2005, CMS published the first full rewrite of the MHB since its initial release in the Federal Register. The document, titled Medicare and Medicaid Programs: Hospice Conditions of Participation; Proposed Rule, requests more specificity in definitions related to hospice staff and services, a requirement that comprehensive patient assessments include data elements to measure outcomes, and performance improvement projects that “reflect the scope, complexity, and past performance of the hospice’s services and operations,”⁷ among other proposed changes. The hospice industry had 60 days to comment on the proposed changes. The final release can be expected within two years. Industry leaders and hospice clinicians want the new CoPs to enhance practice and heighten service for beneficiaries.

Table 3

Medicare-Eligible Disease Categories

When they think of hospice, most people also think of cancer. In fact, hospice was developed in large measure to address the pain and symptom management needs of patients dying of cancer. After the first decade of Medicare-reimbursed hospice care, however, it became clear to those in hospice practice that patients with a non-cancer diagnosis also needed hospice care. Patients with chronic, debilitating diseases experience the same serious decline that patients with cancer undergo, and with that decline, the uncertainty and suffering associated with death.⁶

In the mid-1990s, the National Hospice Organization, now known as NHPCO, sponsored the research and development of guidelines to help establish the required criteria for Medicare eligibility for those patients with non-cancer diagnoses, including the disease categories below:

• Amyotrophic Lateral Sclerosis
• Dementia
• Heart disease
• HIV disease
• Liver disease
• Pulmonary disease
• Renal disease
• Stroke and coma

Guidelines are available in hospice and palliative care resource texts and through the NHPCO.

Clinical Vignette

Mr. G. is a 92-year-old man with a diagnosis of end-stage liver disease; he has lived with his chronically ill daughter for the past 20 years. He is labile and increasingly weak, and has had a recent episode of GI bleeding, which occasioned his most recent hospitalization.

Because of her health, the daughter receives permanent disability, and her finances are limited. Mr. G. also has limited financial means. During hospice admission, his daughter did not know how they would make ends meet. The hospice nurse assures Mr. G.’s daughter that the Medicare hospice program will cover his expenses as long as he elects the hospice benefit and willingly receives his care within the framework of the agency’s standards. Mr. G.’s daughter, however, is wary because she heard the same thing from the admission people when Mr. G. was hospitalized, and he still received a bill for more than $20,000.

Apart from his monthly Social Security check for $700 and Medicare, Mr. G. has no financial resources. His daughter would be unable to afford rent on their apartment without his monthly Social Security check. She is also worried that her own illness will prohibit her from caring for him through the final phase of his illness; she has no idea how she will pay for the help she knows he will require to stay at home. After the admission visit, the hospice nurse:

• Telephones the social worker who is scheduled to make a visit the next day. The nurse leaves voice mail so that the SW is aware of the patient and daughter’s limited finances and the potential need for community resources to keep Mr. G. at home, which is his desire. Ideally, the social work plan will include assistance for the daughter after her father’s death. The nurse alerts the SW about her intention to take Step 2, since this would normally be a social work function.
• Consults with the hospice manager to find out whether funds are available through the hospice foundation to hire caregivers so Mr. G.’s daughter will not become exhausted with the burden of her father’s care.
• Telephones the home health aide scheduling desk to arrange for CHHA visits five times a week for personal care, linen changes as required, and help with activities of daily living.
• Telephones Mr. G.’s physician to inform him of admission findings, with particular attention to the issues raised by Mr. G.’s daughter.

Chapter Five
Pain Management in Hospice

The goal of this chapter is to acquaint you with several of the important pain management issues relative to hospice practice. A more advanced course would be required to teach the intricacies of pain management, let alone hospice pain management.

Hospice pain assessment

One of the first concepts to grasp is that in modern hospice practice, pain assessment is considered a necessary vital sign for all hospice patients, even when the nurse might defer the measurement of blood pressure, pulse, or temperature.

Pain is a subjective experience. Margo McCaffery, RN, MSN, FAAN, one of the nation’s leading experts in pain management, has taught us that pain exists when a person says it does.¹ For the hospice nurse, this is a particularly crucial concept, since pain relief for the dying person could be delayed if it needs to be determined that a patient actually has pain before treatment can be provided. As McCaffery stated, “An important distinction exists between believing the patient’s report of pain and accepting that report. ... The clinician is entitled to his or her personal doubts and opinions. But these cannot be allowed to interfere with appropriate patient care.”¹

To assess the hospice patient’s pain, the nurse asks about the intensity of the pain; its quality; its onset, duration, variations, and the rhythms of it; activities or circumstances that cause or increase the pain; what the effects of pain are for the patient; and what, if anything, has been found to relieve the pain. The hospice nurse also asks about the patient’s goal related to pain. For example, on a scale of 0-10, with 0 the absence of pain and 10 the worst pain, the patient indicates the level of pain he or she believes to be acceptable. See Table 1 for more information about the assessment of the hospice patient’s pain.

Table 1

Primary Features of a Sample Hospice Pain Assessment

• Site of the pain; use a drawing to indicate precise area
• Intensity
• Pain rated on a scale of 0-10:
• Acceptable level of pain
• Best level of pain
• Level of pain on assessment
• Worst level of pain
• Descriptors related to pain:
• Continuous
• Intermittent
• Time of day when pain is best
• Time of day when pain is worst
• Transient
• Activities of daily living accompanied by pain
• Effects of pain:
• Appetite
• Associated symptoms
• Concentration
• Emotional experiences
• Physical activity
• Relationships with others
• Sleep
• Medications or other treatments that relieve pain include:
• Dosage, frequency, results, route, and side effects of medication
• Description of other treatments that provide pain relief
• Patient’s goal about pain relief
• Plan to achieve pain relief

Source: Developed by the author from the documents of Sutter VNA & Hospice, Emeryville, Calif.

Types of pain

One consideration during pain assessment is how to categorize the pain. Most clinicians first assess whether the pain is acute, as is the case for an injury or a recent surgery. Acute pain can usually be treated effectively and it typically wanes when healing occurs. However, the treatment of persistent chronic pain is a challenge because the cause of the pain can be intractable and is frequently affected by other factors. One example of a factor that complicates the treatment of pain is stress.

Further delineation of pain requires the clinician to assess whether the pain is nociceptive, from damaged tissues.^1,2 This pain is divided into two subtypes: one is somatic or from bones, joints, muscles, skin, or connective tissue; and one is visceral or derived from organs. Patients frequently describe somatic pain as achy or throbbing, usually in a localized area. When visceral pain is from tumor involvement, patients complain of cramps, a localized sensation that is both deep and achy; when pain is from an obstruction, patients often experience intermittent cramps that are not readily localized.

Neuropathic pain, another pain category, is common in hospice patients and a challenge to manage. Neuropathic pain can arise from any number of causes, such as the adverse effects of diabetes, trauma, in the wake of herpes or HIV, or as a result of cancer. After years of observation and theorization, researchers now believe that the many etiologies of chronic neuropathic pain arise from one pathway, a finding that ultimately improves its prospects for treatment.²

Patients describe constant neuropathic pain as burning or tingling and intermittent neuropathic pain as sharp, shooting, or shock-like. The differences in descriptors between constant and intermittent neuropathic pain require a carefully detailed pain assessment, as well as customized approaches to treatment.

Additional factors in pain assessment

Because most experts agree that pain is an experience rather than a function of the body, the hospice pain assessment includes the nurse’s evaluation of the patient’s psychological and environmental status. Considerations include any history of depression or other mood disorders; anxiety disorders; emotional distress as a result of the effects of stress; sleep disturbances; changes in activity; weight loss or gain — although weight loss is more commonly reported in the patient with a terminal illness; any co-morbidities that could add to the experience of pain; and changes in the patient’s living arrangements or home-related circumstances.³

Also important is the potential for pain syndromes, usually from the pain sources noted. An example is affective or idiopathic pain, which presents as excessive when the clinician considers the underlying disease that causes it. Psychological circumstances, and anxiety and agitation, usually play a role in idiopathic pain. Another pain syndrome is iatrogenic pain, caused by therapies or procedures that are often meant to relieve pain.⁴

Barriers to pain management

Clinicians, patients, and families can all pose challenges to the pain management regimen, especially when they have not been fully informed of the options. Inadequate knowledge is among the major barriers to effective pain management, followed closely by poor pain assessment, which fails to address the pain adequately and also sets the stage for the mistrust that frequently develops after misinformation has been given.⁵ Added to these barriers is the unease of patients and families related to the use of controlled substances. Physicians may also put up the same barrier in the care of their patients with palliative care needs. To prescribe controlled medications can be a bureaucratic headache for the uninitiated.^5,8 In addition, adverse effects associated with analgesics and the possibility of addiction, physical dependence, or tolerance are frequently seen as barriers to care. To educate the patient and family about the likelihood of dependence and tolerance and to differentiate these from addiction is one of the primary goals of the hospice nurse CM, along with continued vigilance around the patient’s self-report of pain and the nurse’s own assessment of the patient’s pain.^5,8,9

To serve hospice patients well, the nurse must continue to learn pain management techniques and keep up-to-date on all evidence-based treatments. For example, the hospice nurse CM needs to know the onset, peak, and duration of effect for each pain and adjuvant medication that the patient takes; whether the patient requires treatment for breakthrough pain; and the patient’s goals for pain management therapy. Further comments about professional responsibility and supp