Selena, a 24-year-old, has just given birth to her first child, a healthy, 8-lb girl. After a normal delivery, she complains of severe abdominal pain that persists even with narcotic analgesics. After an extensive work-up, results show that the melanoma she was treated for several years earlier has metastasized to her brain, liver, and lungs. The oncologist does not recommend chemotherapy, but does recommend radiation to the brain metastasis. Selena wants to go home and care for her new baby for as long as possible. 

Jane, a 79-year-old mother and grandmother with Alzheimer’s disease, has been a resident in a skilled nursing facility for three years. Swallowing has become increasingly difficult for her, and she has recently developed a sacral pressure ulcer related to poor nutrition, weight loss, and decreased mobility. In recent weeks, she has become much more disoriented. Jane, one of six children, watched her eldest brother die a slow death with Alzheimer’s and was concerned about herself and her family if she became ill with the disease. Before her illness, she had drawn up a living will requesting no artificial feeding or hydration. 

Kate, a 28-year -old married mother of three-month-old Conner, is hospitalized with a reoccurance of her breast cancer secondary to the pregnancy. This time the cancer has metastasized to her bones and liver. Kate knows she is seriously ill, but when discussing her goals, she states. “I want to be alive to care for Conner.” She is currently receiving an aggressive regime of chemotherapy, in addition to TPN, while being treated for an infection in her port-a-cath. 

All of these  situations refer to actual patients, with the names and some details changed to protect confidentiality. Each patient qualifies either for hospice or palliative care and, in each case, would benefit best from a different type of care — hospice inpatient placement for Jim,  hospice home care for Selena,  and continuity of current care for Jane with the support of hospice care at her skilled nursing facility. When hospice provides care at a skilled facility, it regards the facility as the patient’s home and provides care equivalent to hospice home care. When hospice enters the picture, individual evaluation is the key to optimal outcomes for the patient and family. 

For Kate palliative care services, while hospitalized with a referral to palliative home care services upon discharge, would be most appropriate. 

Palliative care is an umbrella term that captures a philosophy of care. The term palliative care encompasses an approach to care that focuses on providing comfort and maximizing quality of life, from a physical, emotional and spiritual perspective. This care can be offered anywhere on the disease trajectory of a life-limiting illness. When discussing hospice and palliative care, hospice is one way to receive palliative care and is offered at the end of the disease trajectory. Conceptually, hospice and palliative care are the same; reimbursement and admission criteria are the distinguishing factors. 

In 1978, the National Hospice Organization was formed to organize hospices and standardize care. In recent years, its name changed to the National Hospice and Palliative Care Organization (NHPCO). It defines palliative care as treatment that enhances comfort and improves quality of life.¹ No specific therapy is excluded from consideration. The test of palliative treatment lies in the agreement by the patient, the physician, the family or primary caregiver, and the interdisciplinary team that the expected outcome is relief from distressing symptoms, easing of pain, and enhancement of quality of life.² 

Modern hospice refers to a philosophy or approach to care, not an actual place. Hospice weaves together contemporary medicine and compassion and caring in a search for meaningful treatment of patients with terminal illness. Active curative therapies are not included in hospice care — quality of life in the midst of illness is the goal.

Guiding patients and families through the final stage of life requires the expertise of many disciplines. A group of professionals and volunteers makes up the hospice team and provides care to patients and social, spiritual, and emotional support to patients, their families, and significant others. Nurses, nurses’ aides, social workers, spiritual coordinators, pharmacists, dieticians, medical directors, the patient’s physician, volunteers, and, on a contractual basis as needed, speech therapists, occupational therapists, and physical therapists make up the team. As participants in care planning, the patient and family are also part of the team. The hospice nurse makes regularly scheduled visits to the patient providing expert pain-management and symptom-control techniques, keeps the primary provider informed of the patient’s condition, and provides the complete spectrum of skilled nursing care.¹ 

The modern hospice movement began in Europe and came to the U.S. in the 1970s. Volunteers staffed the first hospices, providing mainly supportive care. In 1982, Congress adopted the Medicare Hospice Benefits program to provide funding for hospice care. Before this, hospice care was limited since donations and fund raising were the main sources of revenue. Funding was not available for medications, medical equipment, and supplies. The services of the staff were not reimbursable under most insurance plans, Medicare, or Medicaid. Today, Medicare Hospice Benefits provides a per diem rate to hospices that allows them to offer a range of interdisciplinary services. Following the adoption of Medicare Hospice Benefits, many private insurance companies and most Medicaid programs began offering hospice benefits as well. (See the chart for services offered by Medicare Hospice Benefits.) In May 2005, the Centers for Medicare and Medicaid Services (CMS) announced the first proposed changes to the conditions of participation for hospices, originally published in 1983, that they believe will ease regulatory burdens and improve quality of care. The final rule will be published by May 27, 2008. One of the most significant changes to the proposed conditions of participation have to do with the collection of data to show the outcomes of good hospice care, called Quality Assessment and Performance Improvement ( QAPI). The NHPCO launched an initiative call Quality Partners last year to help hospices get ready for QAPI.³  

An Array of Services 

Patients who require care at home often have options that will best suit their needs — home care and palliative or hospice home care. Medicare and private insurance companies dictate which patients will qualify for home care based on their level of need. (See www.medicare.gov for the specific guidelines.) Patients qualify for hospice care if their physician certifies a six-month or shorter life expectancy, if the disease process follows its normal course. (The chart compares Medicare Home Health Benefits with Medicare Hospice Benefits.)⁴ 

Palliative home care does not have a separate reimbursement system and follows the same regulatory requirements for eligibility as traditional homecare. In June of 2004 the Center for Advancement of Palliative Care issued clinical guidelines for palliative care but at this time, CMS does not have specific regulations for providers offering palliative care services.⁵ 

Since the adoption of the Medicare Hospice Benefits in 1982, hospice care has been a fully reimbursable Medicare Part A Benefit option. Medicare has four parts —

• Part A (hospital insurance), which helps pay for care in a hospital and skilled nursing facility and for home healthcare and hospice care
• Part B (medical insurance), which helps pay for doctors, outpatient hospital care, and other medical services
• Part C, a Preferred Provider Organization (PPO) option that became available in 2004
• Part D, a new prescription drug coverage plan that became available in January of 2006. www.medicareadvocacy.org

Most people do not have to pay for Medicare Part A; however, most do have to pay for the other options. According to CMS, 45 states currently offer a Medicaid hospice benefit. About 80% of private insurance plans also offer hospice benefits. Most others will negotiate a rate or use home health benefits for hospice. About 67% of hospices nationwide are not-for-profit, 27% for profit, and 5% operated by the government.³

Most hospice programs provide care for patients without insurance or other reimbursement options, using “indigent funds” raised by donations or fund raising. In most cases, this means hospice care is accessible to all. All Medicare-certified hospices must provide the same mandated services to all patients served whether or not they are Medicare recipients. The majority of people who die in the U.S. (80% to 85%) are Medicare beneficiaries age 65 and over, and most die from chronic conditions.⁶ Therefore, to receive adequate reimbursement, hospices must be Medicare-certified, which indicates that they care for patients regardless of ability to pay. As of November 2006, The National Hospice and Palliative Care Organization reported that 93% of hospices agencies are Medicare certified. NHPCO’s code of ethics says that organization members must ensure that hospice services are not reduced because of financial reasons.⁷

Today, most patients must choose between palliative care and aggressive treatment due to strict reimbursement guidelines. In recent years, some medical facilities have incorporated palliative care units within the facility to provide palliative care and aggressive treatment on a continuum. One study at a large medical center reported a cost savings of 57% on a palliative care unit as opposed to a traditional unit. In 2007, the American Hospital Association Annual Survey of Hospitals shows that 1,240 hospitals now provide palliative care programs. According to the Center to Advance Palliative Care this is an improvement from 632 in 2000. CAPC also reports that of the 4,103 hospitals that could potentially have palliative care programs, 30% have a program and 46% of hospitals in cities with a population of 1 to 2.5 million people have a palliative care program. Although palliative care programs are growing rapidly, there is still a lack of uniformity among program, according to Betty Farrell, RN, PhD, research scientist at City of Hope Medical Center in Los Angeles and chair of the National Consensus Project for Quality Palliative care. This is one of the reasons for the development of the Clinical Guidelines in 2004.⁸

Eligibility for Hospice Services

A survival prognosis of six months or less establishes eligibility for Medicare Hospice Benefits. The patient’s physician must certify this prognosis. In addition, the patient or patient’s designated legal representative must sign an informed consent in which the patient eligible for Medicare waives the right to standard Medicare benefits for the management of the terminal illness and chooses palliative care. Curative therapies related to the terminal illness are not reimbursable under Medicare Hospice Benefits. 

The hospice team provides services for two 90-day benefit periods followed by unlimited 60-day benefit periods. The physician and/or hospice medical director must recertify the patient at the end of each benefit period as long as the patient continues to meet hospice criteria. Because prognoses can be uncertain and may change, Medicare benefits are not time limited. Hospice care is available as long as the patient’s prognosis meets the law’s six-month test. The governing statute states: “The certification of terminal illness of an individual who elects hospice shall be based on the physician’s or medical director’s clinical judgment regarding the normal course of the individual’s illness.” The statute further notes that “making medical prognostication of life expectancy is not always exact.” Thus, there is no reason for a physician, relying on his or her best clinical judgment, to be concerned about certifying an individual for hospice care.⁹ For conditions unrelated to the terminal illness, a patient may use all appropriate Medicare benefits. If Medicare Hospice Benefits are revoked, the patient immediately reverts to prior coverage. 

Nurses play a key role in assessing patients and gathering the information needed to assist in the certification and recertification processes. They compile such data as lab results, vital signs, functional assessments, and basic nutritional assessments. They also assess clinical signs and symptoms and use staging tools, such as the Karnofsky Performance Status Scale, the New York Heart Association Functional Classification, and the Functional Assessment Staging Test. Patient situations aren’t always black and white. The physician must consider coexisting conditions that affect the terminal illness, the history and progression of the disease, and the patient’s physical baseline. 

The National Hospice and Palliative Care Organization provides a useful data-collection tool to help determine prognosis. The tool assists nurses by outlining data needed and providing worksheets. Medical guidelines are available for most noncancer diagnoses and general guidelines for all others. Published by the Carolinas Center for Hospice and End of Life Care, Hospice Care: A Physician’s Guide provides detailed outlines for noncancer diagnoses: heart disease, pulmonary disease, liver disease, renal disease, HIV, dementia, stroke and coma, and amyotrophic lateral sclerosis. All patients with a cancer diagnosis are considered eligible for certification and recertification if they meet the six-month test; agree to palliative care; and are not pursuing aggressive, curative treatment. Since publication, the guide has added adult failure to thrive to the list of noncancer diagnoses with medical guidelines and has renamed the dementia guidelines to Alzheimer’s disease and related disorders. Some discussion of adding medical guidelines for some of the more prevalent cancers has occurred; however, these guidelines are not yet in draft form. (Go to www.palmettogba.com to view all the guidelines.) 

The best-laid plans and prognostications change. A patient may discontinue hospice services at any time by withdrawal for any reason or revocation in order to receive treatment not covered in the hospice plan of care. The hospice may discontinue services if the patient no longer meets the Medicare criteria. The patient may also transfer to another hospice program. Patients may not be discharged because of inability to pay, high cost of treatment, “high-tech” palliative care ordered by the physician, or “difficult” behavior. If a patient chooses to revoke Medicare Hospice Benefits, he or she forfeits the remaining days of that benefit period. However, patients may elect the benefits again at any time if they meet the criteria. 

The Referral 

Anyone may make a referral to a hospice program, although most often, referrals come from hospital discharge coordinators and nurses in physician offices. However, clergy, family members, friends, or even patients themselves may make the referral. Once it is anticipated that the patient’s prognosis may be six months or less and the patient is seeking palliative care, all it takes to make a referral is some basic demographic information and a phone call. “Do your homework before deciding,” advise those most familiar with hospice. Services may vary from one program to the next. Most hospices provide Medicare-mandated services; however, some may provide other services, such as on-site residential housing, pre-hospice programs, and on-site therapists. A listing of hospices appears on the National Hospice and Palliative Care Organization website at www.nhpco.org.  

To date, there are no specific eligibility requirements for palliative care services. Each program establishes its own criteria for admission. Most refer to “life-limiting illness” or “advanced disease” as prognostic criteria.⁵ 

Following the initial call, the hospice nurse speaks with the patient’s physician to verify eligibility for hospice and then contacts the patient and/or family to set up an appointment to discuss hospice care and services. In the meeting, the nurse presents care options, delivery of services, and the philosophy of hospice care. At this point, patients may elect hospice care or choose to spend time talking over options with family members, significant others, and their physician. The initial discussions are often quite emotional. In fact, in many instances patients have learned of their diagnosis and prognosis recently. Patients and families need time, easy access to the hospice nurse for questions, and clear information as they come to a decision. 

The community is often unaware of or does not understand the services a hospice provides. According to a survey conducted by the National Hospice Foundation, 75% of Americans did not know that hospice care is available in the home, and 90% did not realize that hospice care can be fully covered by Medicare. However, this study also showed that Americans want the kind of end-of-life services offered by hospice.⁴ A South Carolina State Survey conducted by the South Carolina Collaborative on End of Life Care in spring 2001 points to some key areas for education. Nearly 60% of those surveyed said they would prefer to die in their own home. If they were to face a situation in which they might be unable to make decisions for themselves, 58.9% had done nothing to prepare, 18% had a living will, and 7.5% had initiated a health care power of attorney. Overall, 47.6% said they needed more information in order to reach the best decision about end-of-life care.¹⁰ According to multiple surveys, more than 80% of Americans have expressed a desire to die at home. Nonetheless, more than 80% die in health care facilities. 

Hospice bears a stigma of sorts — the stigma associated with sickness and death in a society that seems to revere fitness and health. Many people mistakenly think that hospice care is reserved for patients with cancer. In actuality, hospice serves any patient with a life-limiting illness, provided he or she has a six-month or shorter prognosis. In 2006 46% of hospice patients were diagnosed with cancer on admission.³ The top  noncancer causes of death included end-stage heart disease (12%), dementia (9% ), debility (9%), and lung disease (7%).³

People may wait until they or their loved ones are very close to death to choose hospice care, or physicians and nurses may delay referral. When the patient is referred to hospice late in the illness, he or she cannot realize the full benefits of the team approach. Often, in the last week of life, symptom management problems arise, and the nurse must spend time focusing on symptom control and educating the family and patient. Time to develop a therapeutic relationship and institute supportive measures is sorely limited. 

On the other hand, hospice care is not for everyone. But according to a number of surveys, the majority of people would elect the services offered by hospice. Its palliative approach involves the patient and family as a unit, and spiritual and emotional support are important aspects of the interdisciplinary approach. In addition, bereavement and grief counseling are available after the patient’s death, and hospices often provide individual or group sessions focused on coping and dealing with loss. If a patient is in need of end-of-life care, hospice provides many benefits that cannot be obtained elsewhere. Although hospice has come a long way, it is evident that patients, the community, and health care providers still have a great deal to learn about this life-affirming service.

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