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* From the Pain and Palliative Care Program (Dr. Abrahm), Dana-Farber Cancer Institute and the Brigham and Womens Hospital, Harvard Medical School, Boston, MA; and Pulmonary, Allergy and Critical Care Division (Dr. Hansen-Flaschen), University of Pennsylvania School of Medicine, Philadelphia, PA.
Correspondence to: John Hansen-Flaschen, MD, 873 Maloney Building, Hospital of the University of Pennsylvania, 3400 Spruce St, Philadelphia, PA 19096; e-mail: jflash{at}mail.med.upenn.edu
| Abstract |
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Key Words: cystic fibrosis hospices interstitial lung diseases lung diseases obstructive lung diseases palliative care pulmonary hypertension respiratory track diseases terminal care
| Introduction |
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From the outset of the movement a century ago, hospices have welcomed dying patients in need regardless of age or underlying diagnosis. Nevertheless, hospice services are still used predominantly by elderly victims of cancer. Limited available information suggests that patients who have terminal, nonmalignant lung diseases are comparatively underserved. Although COPD is the fourth-leading cause of death in the United States, a study2 of 6,451 Medicare patients enrolled in the hospice programs of five states during the fall of 1990 reported that 80.2% had cancer and only 3.1% had COPD. The National Home and Hospice Care Survey conducted by the National Center for Disease Statistics3 found the 7.3% of patients enrolled in hospice programs in 1996 had a primary diagnosis of respiratory distress, whereas 58.3% had a malignancy.
Reasons for low utilization of hospice services by lung disease patients have not been studied and are likely to be multiple. One explanation may be a lower awareness of hospice eligibility criteria and services among pulmonologists than oncologists in the United States. Prior to 1999, the topic of palliative and terminal care for patients with advanced lung disease was rarely represented at the annual meetings of the American Thoracic Society or the American College of Chest Physicians. The medical literature on this topic is similarly deficient. A Medline search using the MESH terms "exp hospice" and "exp lung disease" performed in February 2001 yielded only three brief citations and one article devoted specifically to this topic.4 5 6
In this article, we review hospice care in the United States with particular attention to eligibility criteria and services available for patients with COPD and other forms of advanced lung disease. Specific recommendations are offered for referring respiratory disease patients to hospice.
| Development of the Hospice Movement in the United States |
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Early modern hospices were supported primarily by donations and volunteer effort and were driven by an emerging desire of many Americans and those who cared for them to seek a less technological, more personal death at home.8 Despite growing enthusiasm for the movement, utilization of hospice services was limited in the United States until 1982 when the Medicare Hospice Benefit was established as part of the Tax Equity and Fiscal Responsibility Act.9 Hospice utilization grew rapidly thereafter. By 1997, hospice consumed approximately 1% of the entire annual Medicare budget.1 Presently, virtually all federal health insurance programs and approximately 82% of managed-care plans also offer some form of hospice benefit.1 US service veterans who have no other health insurance are eligible to receive hospice services in inpatient units, or are cared for by community hospice agencies in nursing homes or their own homes.
In comparison with the voluntary organizations of the 1960s, the hospices of today are highly regulated. The Health Care Financing Administration (HCFA) requires hospice accreditation and certification for federal reimbursement of clinical services. Medicare accepts accreditation by Joint Commission for the Accreditation of Health Care Organizations or the Community Health Accreditation Program as fulfilling the Conditions of Participation for Medicare Hospice Programs. As of 1999, 44 states additionally require licensing and inspection of hospice programs. The National Hospice and Palliative Care Organization (NHPCO) has prepared a statement entitled, "Hospice Standards of Practice," which includes guidelines for hospice quality-assessment programs. Presently, accredited hospices operate in all 50 states, the District of Columbia, Puerto Rico, and Guam. The NHPCO maintains a list of accredited member hospices on their Internet site.10
| Goals of Hospice Care |
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Byock11 has written that hospice does not view dying "as if it were a set of medical problems to be solved." Hospice workers approach dying as an active phase of life, filled with the many goals that patients and their families wish to complete before death. Individuals who have unmet needs or unrelieved physical, psychological, or spiritual suffering have neither the energy nor the presence of mind to pursue those goals without assistance. Hospice endeavors to meet care needs and relieve suffering so that patients can accomplish their goals. The role of the hospice team is much like that of Michelangelo, who said that he could see his future work of art in his chosen block of marble and that he worked simply to free his visions from the stone. Hospice workers apply similar energy to freeing patients from suffering and functional limitations so that they can travel, visit with family, reconcile personal differences, prepare a legacy, and reflect on their lives.
In addition to improving the care of the dying, hospices have been promoted as a means of reducing health-care expenses, although the extent to which this goal has been achieved remains controversial.12 A study of data collected during the first 3 years of the Medicare program estimated that the federal government saved $1.26 for every dollar spent on Medicare Part A expenditures for hospice care.13 A 1995 study commissioned by the NHPCO reported that Medicare saved $1.52 for every dollar spent on hospice care.1 An Institute of Medicine report14 issued in 1997 could not conclude whether hospice, as currently regulated and funded, is cost-effective, but recommended nevertheless that "hospice programs should be promoted on noneconomic grounds related to their emphasis on medical and nonmedical care goals, attention to families and others close to their patient, provision for nonmedical supportive services, and similar features."
Despite growing acceptance in the United States, several misperceptions persist about hospice care among physicians as well as patients. Common misperceptions are summarized in Table 1 and are discussed in greater detail below.
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| Who Qualifies for Hospice Care? |
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From the beginning of the Medicare hospice benefit, three general
requirements have applied to all patients referred for federally
financed hospice care. These are summarized in Table 2
. Most importantly, the referring physician and hospice medical director
must both certify that the patient has a life expectancy of
6
months if the disease runs its usual course.15
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| Insurance Coverage for Hospice Care |
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Medicare reimburses hospice programs by capitation. In return for comprehensive care, Medicare pays hospice programs a fixed "per diem," ranging from approximately $100 to $600/d based on the level of care provided (Table 4 ). Medical needs unrelated to the terminal illness, such as treatment for a physical injury, are covered by Medicare Part A and/or B as appropriate. The patient is encouraged to maintain relationships with the referring physician and appropriate consultants. These providers are paid separately by Medicare Part B or by a Medicare HMO according to the usual fee schedules.
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In response to an application, Medicare approves hospice for the duration of a time-limited "election period." Medicare hospice beneficiaries receive two 90-day election periods initially, followed by an unlimited number of 60-day periods, so long as the patient remains eligible for hospice care. The patient may revoke the hospice election at any time, in which case the remaining days in that election period are forfeited, and regular Medicare Part B coverage resumes. The individual can resume hospice coverage at any future time under a new election period. Patients may change the designation of a particular hospice once each election period without revoking their election. Hospice programs are expected to discharge a patient if the individuals condition stabilizes or improves to the point that life expectancy exceeds 6 months if the disease runs its usual course.15
Each year, Medicare sets a cap on total payments to individual hospices per patient per year. The cap was approximately $15,000 per patient per year in 2000. Thus, a hospice with a Medicare census of 10 patients in 2000 would be reimbursed no more than $150,000 that year, while one with a census of 100 could receive up to $1,500,000 from Medicare in a year. For that reason, larger hospices are generally better able than smaller hospices to absorb the care of Medicare patients who have unusually expensive palliative care needs.
The Veterans Administration (VA) provides inpatient hospice care in specialized hospice units. Some veterans with no insurance who do not qualify for Medicaid receive hospice-like home-care services through VA hospital-based programs. Other VA hospitals contract with private hospices to provide home care. In the latter case, the VA provides medications and durable medical equipment and the hospice provides the needed personnel services.
Medicaid, private health insurers, and private HMOs reimburse hospice programs at negotiated rates, which vary considerably.14 Private HMOs generally require case-manager preapproval for hospice services. Some insurers do not cover respite or inpatient hospice care or other services covered under the Medicare benefit. Other private insurers have set a lifetime cap on hospice coverage of $5,000 per person, for example. Overall, government and private insurance payments considerably limit the services hospices can provide. Depending on payer mix, many nonprofit hospice organizations must augment health-insurance payments with donations and grants in order to provide mandated and necessary supplemental services.
| Hospice Clinical Services |
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Levels of Hospice Care
All Medicare-certified hospices provide four levels of care
according to need: routine, continuous, respite, and inpatient.
Medicare reimburses these levels of care at different per diem rates
(Table 4) . Hospices must provide
80% of care in aggregate for
their Medicare beneficiaries at home.
Routine Care: Routine care serves most patients in their usual residential setting for most of the time they are enrolled in hospice. A registered nurse or nurse practitioner makes regular home visits to develop and implement a plan of care, which is tailored to the patients needs, and to provide patient and family education. Services also include home health aides (2 h/d up to 7 d/wk) and counseling through regular visits by the hospice personnel, including the social worker, chaplain, and volunteers as requested. Hospice personnel are continuously available for telephone consultation and urgent home visits.
Continuous Home Care: Continuous home care is provided for patients who require intensive symptom management and for whom the home-care setting remains appropriate. Patients suffering from unrelieved cough, dyspnea, pain, or delirium, or other intolerable symptoms can receive nursing and home health-aide services around the clock for several days until the problem is brought under control. Home visits from the hospice medical director can also be provided.
Respite Care: Respite care is generally provided on contract to the hospice by a skilled or intermediate nursing facility. The goal of respite care is to provide home caregivers with temporary relief to rest or attend to personal affairs. Respite care can also be used to provide skilled care and shelter when the home is temporarily inadequate for patient care. The number of days for respite varies with the type of insurance paying for the hospice care. Medicare hospice allows 5 respite days every 30 days. The hospice is allowed to charge a 5% copayment from the family for the room and board charges in the nursing home, but they rarely do.
Inpatient Care: Inpatient care is rarely required for hospice patients who have adequate home-care facilities and caregivers. Fewer than 1% of hospice patients die in a hospital. However, if distressing symptoms cannot be controlled at home, even with continuous care, the patient can be hospitalized under the Medicare hospice benefit. The hospice team oversees the plan of palliative care, just as they would at home, and team members visit the patient as they would visit an outpatient. A hospice medical director is available to provide consultation for symptom management; however, the referring physician remains the primary physician and may bill for inpatient services under Medicare Part B. Orders are written by inpatient unit personnel and inpatient staff.
Occasionally, hospice patients require hospital admission for reasons unrelated to the terminal diagnosis. For example, a patient with advanced COPD may fall and break a hip. Emergency and acute inpatient care for such problems are covered under Medicare Part B and do not interrupt hospice care.
Therapeutics
Hospices provide all oral, transmucosal, transdermal, and
parenteral medications appropriate for treatment or palliation of the
terminal disease or related conditions. Hospices also pay for durable
medical equipment, medical and nursing supplies, and home oxygen as
needed for the terminal condition. Costs are covered for laboratory and
diagnostic procedures related to the terminal diagnosis, and
transportation associated with changes in the patients level of care.
Radiation therapy and chemotherapy are also covered if appropriate to
palliative care goals, for example, to treat pain or hemoptysis.
Enteral feeding and IV hydration or parenteral nutrition can be
provided by the hospice if they meet the goals set by the patient,
family, and the hospice team.
For patients who cannot tolerate oral medications, or for whom transdermal or rectal medications are not effective or are not desired, medications can be administered by continuous or intermittent IV or subcutaneous infusion (eg, opioids for analgesia, cough, or dyspnea). Infusions of intraspinal opioids or combinations of anesthetics and opioids can also be monitored in the home setting. For the rare patient whose symptoms cannot be controlled any other way, sedating medications (midazolam, phenobarbitol) can also be administered at home parenterally. Administration of IV anesthetics (eg, propofol) is also available, but generally requires inpatient care.
Cardiopulmonary resuscitation (CPR) is widely considered incompatible with the mission of hospice care. Unfortunately, the United States Patient Self-determination Act of 1991 obligates home-care agencies to offer and provide CPR unless refused by the patient or an appropriate surrogate decision maker. More recently, the HCFA has reaffirmed this obligation as a condition of Medicare coverage for hospice services. Thus, hospice professional workers are trained in CPR so that they can attempt resuscitation of a patient who has requested this service if the issue arises during a home visit. The salvage rate for attempted CPR of hospice patients at home is unknown.
| Obstacles to Hospice Care for Patients With Advanced Lung Disease |
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Obstacles to Physician Referral and Patient Acceptance
Many physicians are reluctant to prepare patients for death so
long as the prognosis remains uncertain, "Wont I hurt my patient
and undermine my credibility if I discuss death prematurely?"
Prognostic uncertainty may be a particular obstacle to hospice referral
for patients who have advanced lung disease. Given adequate
oxygenation, nutrition, and hydration, many patients with chronic
obstructive or interstitial lung disease die not because of relentless,
predictable progression to respiratory failure, but rather as a result
of an unanticipated acute exacerbation or intercurrent illness, such as
bronchitis or myocardial infarction. If a patient with marginal
respiratory reserve escapes an acute illness, survival may be
unexpectedly prolonged. Indeed, one study2
found greater
variability of survival after referral to hospice for patients with
chronic lung disease than for any other of 19 terminal diagnoses, with
the sole exception of dementia.
Possibly because of previous, occasional experience with unexpectedly prolonged survival, physicians tend to overestimate the remaining duration of life for many patients in the advanced stages of nonmalignant terminal illnesses.24 Experienced physicians are not immune from this prognostic bias. Prognostic accuracy actually decreases for longer and closer physician-patient relationships, suggesting that familiarity or emotional attachment may also interfere with prognostic accuracy near the end of life.24
Even when physicians do accurately recognize a terminal condition, some are reluctant to raise the possibility of hospice care with their patients for fear of revealing that death may be near.25 This reluctance may be particularly strong after a physician has offered hope in association with a current or anticipated treatment, such as chemotherapy or lung transplantation. Research surveys26 27 have revealed repeatedly that most patients with COPD and other chronic illnesses anticipate their own death and welcome frank discussions and guidance from their physicians. Approximately 90% of American adults express a preference to die at home. Nevertheless, for fear of eliciting a negative reaction, many physicians wait until the patient raises the subject of death to discuss these issues.
In fact, some patients do react with anger or alarm to a physicians recommendation of hospice care. Many Americans are resistant to accepting a terminal prognosis. An Institute of Medicine report noted, "a deeply ingrained public philosophy of individualism, and a general American unwillingness to accept limitsincluding aging and death."14 Callahan28 shares this view. He has written that Americans have "an unwillingness to let nature take its course" that can lead to "death in a technological cocoon."
Common misperceptions and fears about hospice care further interfere with patient acceptance. Many people still visualize hospice as a place where patients occupy cots in rows during their last several hours or days of life. Others fear that consent to hospice signals family and caregivers that they are giving up. Some think that pain and suffering are tests of personal resolve: these patients fight to resist their illness by defying offers of external assistance and pharmacologic symptom control. Doctors sense the importance ascribed by their patients to fighting death by preserving independence, and back off from further discussions about hospice care.
Lung Transplantation
In the United States, approximately 10% of lung transplantation
candidates die while awaiting surgery. Another 25% die during the
first year after transplantation.29
Most of these deaths
occur after a progressive deterioration in respiratory function and can
be anticipated by several days at least. Nevertheless, although
Medicare and most private health insurers allow hospice care for lung
transplant candidates and recipients, relatively few avail themselves
of this benefit.
For patients on a transplant waiting list, and for those who have recently received a transplanted organ, transition to hospice care can be particularly difficult. Some transplant candidates vow to "fight to my last breath." Others perceive removal from the active waiting list either as a temporary setback or as a total loss of a hard-fought battle; either way, they may not be receptive to hospice care. If mechanical ventilation is initiated in an unsuccessful attempt to reverse a downward slide, hospice home care may not be possible at all. The high expense of certain transplant immunosuppressive drugs also inhibits hospice care for these patients.
Limitations on Provision of Expensive Therapies
Hospice patients insured by Medicare elect fixed capitation
payments for palliative care in lieu of Part A coverage. Some
palliative interventions and some vital maintenance therapies are
prohibitively expensive to hospice organizations that depend largely on
capitation revenue. Examples of problematic palliative interventions
include radiation therapy for painful bony metastases and repeated
laser therapy for dyspnea associated with malignant central airway
obstruction. Expensive maintenance therapies for patients with advanced
lung disease include nocturnal or continuous mechanical ventilation and
certain transplant immunosuppressive drugs.
IV epoprostanol (prostacyclin) for pulmonary hypertension is a particularly problematic case in point. Epoprostanol can substantially prolong the survival of selected patients with primary or secondary pulmonary hypertension, but only at a cost that typically increases over time to as much as $400 to $600/d. Unless lung transplantation is performed, pulmonary hypertension generally progresses to a terminal state despite epoprostanol. However, few hospices can afford to continue this therapy on total Medicare capitation payments of approximately $100/d. Withdrawal of the drug is often not an option after prolonged use because of the risk of severe hemodynamic instability and the possibility of sudden death. Thus, many patients who have pulmonary hypertension effectively forego hospice care when they consent to treatment with epoprostanol. Patients who have congestive heart failure face a similar trade-off if they consider treatment with continuous IV milrinone, another drug that can cost $500/d.
Many private insurance companies are willing to negotiate payment for expensive palliative or vital maintenance therapies in addition to hospice care. However, some insurers impose a lifetime cap on payment for hospice care, of $5,000 for example. The patient must pay for additional hospice care after the limited allotment is exhausted. This provision discourages terminally ill patients from enrolling in a hospice program until their condition is far advanced.
Limitations on Hospice Home Care
HCFA specifies that
80% of care days provided by hospice
programs to Medicare and Medicaid beneficiaries must take place at
home.15
While hospices do provide patients with home
health aides 2h/d for as many as 7 d/wk to assist in their personal
care, most of the burden of transportation, homemaking services, and
personal care falls to family, friends, or privately paid professional
caregivers.30
The time, expense, and knowledge required to
care for a terminally ill patient at home is often substantial. Most
hospices do offer specialized protocols and services for patients who
live alone. However, as dependency increases, these services are
eventually overwhelmed. Thus, many patients who have limited family or
community support and inadequate financial reserves require admission
to a nursing home at some time in the progression of their terminal
illness.
Obstacles to Hospice Care for Patients in Skilled Nursing
Facilities
Medicare does not pay simultaneously for hospice care and for
residential care in a skilled or regular nursing facility. A Medicare
beneficiary residing in a nursing home can elect hospice care only if
the beneficiary pays for the residential care, or if the patient is
eligible for Medicaid.
Individuals who meet stringent income and asset requirements for Medicaid are eligible to receive dual coverage. The Medicaid residential payment is assigned to the hospice, and in return, the hospice reimburses the nursing home for the patients room and board and for any additional costs related to the care and treatment of the terminal illness.15 31 Under these circumstances, the hospice can provide significant additional resources to patients and their families, including nurses, social workers, chaplains, and volunteers specially trained in end-of-life issues, and an extra 2 h/d of personal care from a health aide. When the nursing home staff is serving as the patients surrogate family, hospice works can also provide for their emotional needs, including anticipatory grief, reconciliation, closure, and bereavement.
Unfortunately however, hospice programs and nursing homes often have conflicting mandates regarding patient care, such as provision of nutrition and hydration, avoidance of weight loss, treatment of decubitus ulcers, need for patients to be out of bed and ambulatory, and indications for urgent transportation to a hospital. Current nursing home assessment and treatment protocols often do not emphasize palliative-care needs, such as pain, cough, or dyspnea.32 33 For these reasons, hospices that work with nursing home patients pay particular attention to communication of changes in goals of care and importance of symptom management.
| Guidelines for Referral of Pulmonary Patients to Hospice Care |
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(1) despite an adequate trial of optimum available treatment that is acceptable to the patient, a chronic lung disease has progressed to the point that the patient may die at any time because of a ordinary intercurrent illness, such as bronchitis or pneumonia;
(2) because of distressing symptoms or a severely limited performance status, the patient can be expected to benefit from the specialized services offered by hospice programs; and
(3) the patient accepts that death may be near and does not want to suffer needlessly.
The first proposed test recognizes that predicting duration of survival is particularly difficult for patients who have advanced lung disease because many such patients die unexpectedly after an acute deterioration. Patients who meet this criterion can reasonably be expected to survive < 6 months, although some will unexpectedly live longer. The second test aims to match the patients current needs with the special expertise and capabilities of hospice programs. The third test focuses not on "acceptance of death," but rather on the nearly universal fears of people who are deathly ill. To be an appropriate candidate for hospice, a patient need not give up all hope, but must be receptive to professional supportive care for relief of suffering and provision of basic bodily needs.
Given uncertainties of prognosis and the initial sensitivity of many individuals to any mention of hospice, how should physicians broach this subject with their patients? To gain patient acceptance, hospice referral should not be equated with abandonment of hope. Rather, patients should be advised that they are now eligible for additional care and support because their illness has progressed to the point that they might die at any time. For example, "We both hope for the best, but we should also prepare for the worst. Your lung disease has reached the point that you could die at any time now if something unexpected comes along. If you are ready, I am willing talk about how people with your disease die, and how best to prepare for death."
Hospice should be presented as a group of services that are available voluntarily to people who meet certain broad criteria. Enrollment in hospice ensures that counseling, nursing care and treatment for alleviation of distressing symptoms are continuously available on short notice if and when the need arises. Except for those covered by certain private insurance plans, there is no penalty to the patient for early referral. Patients can revoke hospice care at any time if their needs, goals or circumstances change. Once the subject of hospice care is broached, patients who are not currently receptive know that their physician is open to further discussion of the subject.34
| Conclusion |
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Hospice offers a comprehensive multidisciplinary approach to relieving the distress of patients suffering from advanced lung disease and can support their families both before and after the patient dies. Dyspnea and its attendant anxiety, two of the most distressing symptoms these patients experience, can often be ameliorated by the combination of the pharmacologic therapies and the individual, 24-h support that hospice offers. Counseling of patients and families in their own homes about goals and alternative management solutions can prevent unwanted intubation.
Several hindrances to greater use of hospice services by patients who have advanced lung disease can be overcome by physician and patient education. In addition to learning about hospice, referral procedures, admission criteria, and hospice services, physicians should develop specific communication skills to broach with patients and family members the delicate subject of hospice referral. Other obstacles to hospice care for lung disease patients, particularly certain limitations of insurance coverage, require legislative or regulatory reform. Federal regulations regarding CPR of homebound hospice patients are similarly counterproductive and in need of revision. Pulmonary physicians and professional organizations should take an active role in promoting those reforms.
| Acknowledgements |
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| Footnotes |
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When this article was written, Dr. Abrahm was a full-time employee of the University of Pennsylvania. She received partial salary support for service as Medical Director of the Wissahickon Hospice, a nonprofit organization wholly owned by the University of Pennsylvania.
Received for publication December 11, 2000. Accepted for publication March 16, 2001.
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