Chapter 17 Amy M. Corcoran, Neha J. Darrah, and Nina R. O’Connor Hospitalized patients requiring palliative care after discharge have a variety of options to choose from. In order to match your patient/family needs with services, it is valuable to know the benefits and limitations of the various programs. Hospice is the most comprehensive and well-known postacute palliative care program, yet many programs are limited to patients preferring only comfort care with a prognosis of 6 months or less, which makes it less applicable to many seriously ill patients. Most other palliative care programs are devised to meet the needs of those with life-limiting illness in their community. Hospitalists are instrumental in initiating and facilitating palliative care referrals for patients postacute care discharge. Unfortunately, physicians often refer patients to palliative care and hospice too late in their disease course. The CARING criteria, a set of clinically relevant criteria with a high sensitivity and specificity for identifying patients with a high likelihood of mortality at 1 year, can help identify patients who would benefit from a palliative care approach. The criteria include primary cancer diagnosis, nursing home residence, greater than 2 admissions for chronic illness to the hospital in the past year, ICU admission with multisystem organ failure, and fulfillment of greater than >2 noncancer hospice guidelines [1]. Another way to frame thinking about prognosis is to ask yourself, “Is the patient sick enough that dying this year would not be a surprise?” [2]. Palliative care postdischarge should be considered for all patients who meet one of these criteria. Hospice originated in England and the philosophy of providing holistic care to the dying spread to the United States roughly in the 1970s when Dr Florence Wald and others formed Hospice, Inc. of New Haven, Connecticut, the first hospice [3]. The National Hospice and Palliative Care Organization (NHPCO) defines hospice as “The model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well [4].” In the 1980s, the U.S. Congress passed the Medicare Hospice Benefit (MHB). Today, anyone who is eligible for Medicare Part A, has a prognosis of 6 months or less should their disease run a natural course as certified by two physicians (one referring physician and one hospice physician), and agrees with the hospice philosophy may enroll in MHB [5]. Table 17.1 highlights the MHB eligibility requirements. The MHB reimbursement structure is a per diem capitated structure under which the hospice receives a predetermined amount of money each day to provide all of the services necessary to care for the patient and family. While many private insurance companies also cover hospice care, most of these programs model their benefits after the MHB; therefore, we will focus on the MHB in this chapter. Table 17.1 Medicare Hospice Benefit Rights and Eligibility Requirements [5] Hospice care is provided by an interdisciplinary team at home, residential communities, nursing home communities, hospitals, and inpatient units. The hospice interdisciplinary team is made up of nurses, social workers, chaplains, physicians, bereavement specialists, nursing aides, and therapists who specialize in physical, occupational, or nutritional issues. Each discipline adds their unique expertise in caring for the patient and family. The hospice team meets at least every other week to discuss the plan of care for each patient and family. Hospice offers a 24/7 emergency contact number which is usually staffed by a nurse to assist with any symptom emergencies that may arise. Finally, one of the most important benefits is the 13-month postdeath bereavement support offered to the patient’s family. When patients elect hospice services, the hospice assumes responsibility for management of all care related to their terminal diagnosis. Patients waive their right to payment for nonhospice services related to this diagnosis though, as described in the following, patients can revoke the benefit at any time if their goals of care change. All testing and treatment is coordinated by the hospice and paid for by the hospice out of their per diem payment. As a result, testing is usually limited to simple tests that would change management of symptoms or enhance comfort. Because hospice programs receive a capitated payment for each patient they treat and focus these resources on support in the home or inpatient facility, treatment usually excludes expensive therapies like transfusions, chemotherapy, and radiation (but individual hospices may cover exceptions when clearly palliative in nature). Patients who opt for rehospitalization related to their terminal diagnosis must come off hospice so that the hospice is not financially responsible for the hospitalization. In contrast, hospice patients may continue to receive standard care for all diagnoses other than their terminal diagnosis. For example, a patient who elects hospice care for pancreatic cancer can be hospitalized and treated for a hip fracture or can continue to receive dialysis if it is unrelated to the hospice diagnosis [5, 6]. When questions arise around which patients may be eligible for hospice and what treatments they might be able to receive, we recommend speaking with the hospice agency’s medical director. Many agencies provide treatments not traditionally provided by hospice on a case-by-case basis, and these experienced medical directors will provide advice about how hospice might be able to meet the patient’s specific goals. If their treatment goals change, patients can revoke hospice at any time. Their regular Medicare or insurance benefits then resume immediately. Patients can also reelect hospice services at any time, even if they have been on hospice in the past. While it is obviously not preferable to start and stop hospice, it can be reassuring to patients that election of hospice is not an irreversible decision. Four levels of care are offered under MHB (Table 17.2) [4–7]. The majority of patients receive hospice care at the routine level of care. This level of care is provided in the patient’s home, assisted-living facility, or long-term care facility. The frequency of hospice staff visits depends upon the patient’s clinical status and plan of care and may range from one registered nurse visit per week to daily contact from a home hospice aide plus multiple visits from the nurse, social worker, and chaplain. Families should not expect more than an hour or two of services, however; family or paid caregivers must provide any required care the rest of the time. Patients on routine level of care may be declining, but their symptoms can be managed in a home or nursing home setting. Table 17.2 Hospice Levels of Care [4, 5] For patients with symptoms that cannot be managed in the home or nursing home, hospice programs offer general inpatient level of care. This may be offered in a dedicated inpatient hospice center or through contracts with a hospital or nursing home. Patients at this level of care typically need frequent medication adjustments and titrations. The need for IV medications may also justify inpatient care. Inpatient hospice is not appropriate for patients with stable symptoms who lack the social support to go home; these patients should be placed in long-term care facility with hospice services. If an inpatient hospice patient’s symptoms stabilize, that patient must be transitioned to routine level of care in a different setting. Respite level of care is offered as a benefit for caregivers. Hospice patients with stable symptoms can periodically receive up to 5 days of care in a nursing facility or hospice facility to allow for caregiver rest. This benefit can also be used if a hospice patient’s caregiver is sick or needs to travel. Finally, continuous home care is offered for brief periods of crisis (usually uncontrolled symptoms or caregiver breakdown) when a patient is either unable or unwilling to transfer to an inpatient setting. Hospice staff stays in the patient’s home with at least half the time covered by a registered nurse or licensed practical nurse. The remaining time may be provided by a hospice aide. Hospices may not always have available staff to provide continuous home care on short notice. Hospices receive different per diem payments based on the level of care provided. Since general inpatient level of care is paid at a significantly higher per diem than routine level of care, there is increasing regulatory scrutiny to ensure that inpatient care is justified [8]. The nursing home provides 24 h room and board, personal care, and nursing care, while hospice provides interdisciplinary symptom management and emotional and spiritual support and covers cost of terminal illness. MHB is provided under routine level of care to those residing in nursing homes. The room and board is paid for by the patient, family, charity, or Medicaid in some states. This model requires exquisite collaboration between the interdisciplinary teams via a systematic communication approach, knowledge of nursing home regulatory environment, and shared care planning [9, 10]. Hospice was originally developed for cancer diagnoses in which prognostication is generally predictable. Hospice is now widely accepted for noncancer diagnoses, but prognostication in these chronic illnesses can be much more challenging. Specific eligibility guidelines have been developed by Local Coverage Determination (LCD) Medicare intermediaries for noncancer diagnoses which may vary by region. These are truly meant as guidelines and do not replace the clinician’s judgment regarding prognosis of 6 months or less. Because it is difficult for many clinicians to say with certainty that a patient will die within 6 months, we often recommend patients be considered for hospice if their clinicians “would not be surprised” by the patient’s death within the next 6 months.
Palliative Care after Discharge: Services for the Seriously Ill in the Home and Community
17.1 INTRODUCTION
17.2 HOSPICE
To qualify for hospice services under Medicare, patients must:
Be eligible for Medicare Part A
Be certified as terminally ill by:
1. The patient’s own physician
2. A physician from the hospice
Defined as likely prognosis of 6 months or less if disease follows expected course
Elect the Medicare Hospice Benefit
Waive rights to Medicare payment for nonhospice services related to the terminal diagnosis
Choose one hospice to coordinate and deliver all care
To provide care for patients under Medicare, hospices must:
Provide care that includes multiple members of the interdisciplinary team (physician, nurse, social worker, chaplain, pharmacist)
Provide hospice aide services to include personal care and light housekeeping
Provide medication related to pain and symptom management for the terminal diagnosis (at no cost to patient)
Provide necessary medical equipment
Provide bereavement counseling for 1 year following the patient’s death
Reassess each patient’s eligibility for hospice after 90 days, 180 days, and every 60 days thereafter
While on hospice, patients are entitled to:
Choose their own attending physician or nurse practitioner and continue to see that provider for the terminal diagnosis
Continue to receive nonhospice care for unrelated conditions
Change hospices once per benefit period
Revoke hospice at any time with resumption of regular Medicare benefits (must be done in writing)
17.2.1 Hospice Levels of Care
Level of Care
Setting
Criteria
Duration of Care
Routine level of care
Home, assisted-living, long-term care, residential
Eligible for hospice based on prognosis <6 months, stable symptoms
Indefinite
General inpatient care
Hospice inpatient center, hospital, nursing home
Uncontrolled symptoms, need for frequent medication adjustments and/or IV medications, complex care that cannot be provided in any other setting
No limit but generally short term, 1 week or less
Respite care
Hospice inpatient center, nursing home
Need for caregiver rest
Up to 5 days at a time
Continuous home care
Home, assisted-living, residential
Uncontrolled symptoms, caregiver breakdown, crisis
Short term, typically 1–2 days
17.2.2 Hospice for Those Residing in Nursing Homes
17.2.3 Hospice for Specific Diagnoses