Mrs. M, 76, has heart failure (HF); ejection fraction, 35%; atrial fibrillation (she is on warfarin therapy); chronic obstructive pulmonary disease (COPD); forced expiratory volume, 40% with occasional use of oxygen via nasal cannula; and is taking insulin for type 2 diabetes mellitus. During the last year, she was hospitalized five times for pneumonia or exacerbations of HF or COPD. Mrs. M has a stage 2 sacral pressure injury and received short-term certified home-care agency services after the last hospitalization.
Mrs. M lives alone and is still able to carry out her activities of daily living. However, she is becoming progressively weaker, spending more than 50% of her time in bed or on the couch. She has a son and daughter who provide assistance. During a recent visit, Mrs. M says that she does not want to continue coming to the clinic on a regular basis or be hospitalized again. Her daughter is concerned about her care and has contacted agencies for private-hire unlicensed assistive personnel. She asks about options for ongoing medical care for her mother.
In 2014, the top 10 leading causes of death in the United States included chronic diseases such as cardiovascular disease, chronic respiratory infections, stroke, diabetes mellitus, Alzheimer disease, and nephrotic syndromes (see Leading causes of death in the United States).1 Cancer is the second leading cause of death, and patients may live with it as a chronic disease for years before a recurrence or progression of the cancer, which may lead to death.1
NPs routinely care for individuals with chronic diseases who will likely die due to the progression of the disease rather than from a catastrophic event. As the disease progresses or the person ages, disease-related symptoms may become increasingly burdensome. Disease-modifying therapies may either be ineffective or cause more toxicity than benefit. At this juncture, patients may benefit from palliative care or hospice services.2 NPs have the opportunity to ensure that these individuals and their families have care they need at the end of life.
A brief overview of hospice and palliative care
Palliative care and hospice have received significant media coverage in recent years as individuals are beginning to question choices about end-of-life care. The 2014 Institute of Medicine report discussed continued deficiencies in care for those with serious illness and for those near the end of life and highlighted the need to improve care.3 Key recommendations included improvements in patient-centered care, clinician communication, advance care planning, and clinician education.
Recommendations also included public education to discuss options for end-of-life care to increase utilization of hospice and palliative care.3 Even though the Medicare hospice benefit was established in the 1980s and palliative care has evolved as a specialty over the past two decades, confusion still exists about the differences between these services (see Palliative care and hospice goals).4,5
Palliative care can be initiated at any point in the disease spectrum and can be delivered along with disease-modifying therapies.5 This care aims to improve the quality of life for those with serious illness, emphasizing physical, psychosocial, and spiritual aspects of care.6 Palliative care evolved in part due to findings from a large multicenter landmark study (SUPPORT), which highlighted many deficiencies in end-of-life care, including lack of attention to patient preferences, aggressive treatment until death, inadequate symptom management, and communication barriers between patients and physicians.7 Clinical guidelines have been developed to formalize, standardize, and improve the delivery of care for those with serious illnesses.2
There has been a steady growth of palliative care programs within U.S. hospitals. In 2014, 67% of hospitals with more than 50 beds had palliative care programs, and 90% of hospitals with more than 300 beds had palliative care programs.8 Inpatient palliative care consultations can improve symptom management, quality of life, and patients' sense of well-being through improved communication, emotional support, and attention to patient preferences.9 The benefits of inpatient palliative care include decreased ICU admissions and overall decreased hospital costs.10
Results from recent studies in patients with advanced cancer demonstrated that those who received concurrent outpatient palliative care along with disease-modifying therapy earlier in the course of disease had improved quality of life and longer survival.11-13 A recent guidance statement recommends the integration of palliative care services into all cancer centers to improve quality of care.14
Recommendation for using palliative care earlier in the ambulatory setting extends into all settings for those with serious illnesses.2 Improved public awareness is key to growth, as many people still believe that palliative care is the same as hospice. Individuals may also view palliative care as “giving up hope” and thus may delay seeking care until the final weeks of life.2
Hospice is a “palliative” program of care for those with life-limiting illnesses who are not expected to live more than 6 months and who are no longer pursuing disease-modifying treatments.4 In 1967, Dame Cicely Saunders started the first hospice in England.4 In 1974, nurse Florence Wald, along with two pediatricians, started the first U.S. hospice in Branford, Connecticut.4 Congress created the Medicare hospice benefit in 1982, and it became a permanent benefit in 1986.4
The focus of hospice care, like palliative care, is an interdisciplinary approach focusing on pain and symptom management as well as emotional and spiritual care.15 Team members include physicians, NPs, nurses, social workers, chaplains, and volunteers, and may include services such as child-life support, art, or music therapy.15 Hospices have nurses and physicians available 24 hours a day, so patients and families can access support and care.15 Bereavement services are provided to the family members for a year after the patient's death.15
In 2014, approximately 1.6 million patients received hospice services from approximately 6,100 hospice programs in the United States.16 When hospices first evolved as a model of care, most patients had cancer; however, in 2014, cancer accounted for less than half (36.6%) of the hospice admissions.16 According to the National Hospice and Palliative Care Organization (NHPCO) 2014 data, among the top noncancer diagnoses admitted to hospice were dementia (14.8%), heart disease (14.7%), lung disease (9.3%), other (8.3%), stroke or coma (6.4%), and end-stage kidney disease (3.0%).16
As of October 2014, the Centers for Medicare and Medicaid Services (CMS) no longer accepts debility as a primary hospice diagnosis.17 The average length of stay on hospice decreased from 72.6 days in 2013 to 71.3 days in 2014.16 In addition, in 2014, the median length of stay was 17.4 days, a decrease from 18.5 days in 2013; therefore, 50% of patients were enrolled in hospice less than 17 days.16
According to Medicare data from 2010, 6% of beneficiaries with cancer were receiving chemotherapy in the last 2 weeks of life, and 10.9% enrolled in hospice within 3 days of death.18 According to 2014 NHPCO data, less than half of patients in hospice died at home (35.7%).16 The remainder died in long-term care facilities (14.5%), residential facilities (8.7%), hospice inpatient units (31.8%), and under acute care in hospitals (9.3%).16 Despite the growth, hospices still remain underutilized for end-of-life care. The underutilization may be due to cultural reasons, goals of care not consistent with hospice, lack of access, cost, or lack of knowledge about the hospice benefit.19-21
Hospice and palliative care considerations
NPs may be faced with the question “How do I know if my patient is a candidate for palliative care or hospice?” when caring for patients with serious illnesses. Individuals with life-limiting illnesses are eligible for palliative care services that can be delivered in conjunction with disease-modifying therapy.2 Interdisciplinary palliative care teams vary in size and may include medicine, nursing, social work, and chaplaincy providers who have specialty training and may be credentialed or board-certified in palliative care.
Palliative care specialists assist in managing uncomfortable symptoms that significantly affect a patient's quality of life.2 These teams work in conjunction with the primary service, and although all clinicians can discuss goals of care and preferences for treatment, often this team addresses these issues.2 Outpatient palliative care clinics and home-based palliative care programs may be available in certain communities to provide assistance to individuals and families facing serious illnesses, but they are generally consultation services.13,22,23 Palliative care services are billed in the same manner as other specialty or consultation services. The billing is generally related to symptom management codes versus billing for primary diagnoses such as COPD or HF, which avoids potential duplicate billing if the patient receives services by the primary care or disease specialty practitioner on the same day.24
Hospice eligibility may be easily determined when an individual has metastatic cancer, a declining functional status, and can no longer tolerate chemotherapy or other aggressive therapies.25 However, it may be more difficult to determine eligibility when the patient has a noncancer diagnosis with a variable and lingering course such as HF, COPD, or dementia.26-28 Referral to palliative care may be the most viable option when a patient is not in the final months of life but is experiencing worsening symptoms, wishes to pursue aggressive therapy, or refuses hospice enrollment. The patient may be faced with critical decisions regarding further options for care.2,3,13
There are many guidelines available when determining if a patient is eligible for hospice. CMS provides local coverage determinations that can serve as guides for determining eligibility along with the provider's clinical judgment.15 To be eligible for hospice, the prognosis must be 6 months or less if the disease runs its normal course.15 Because providers often overestimate prognoses, a helpful question may be, “Would I be surprised if my patient died in the next year?”29,30 The Palliative Care Network of Wisconsin publishes Fast Facts (an evidence-based document that is available online at www.mypcnow.org/fast-facts) for specific disease states such as for HF, COPD, dementia, liver disease, and kidney disease to serve as a guide for hospice eligibility.26-32
Other criteria utilized to consider hospice eligibility include the patient's functional status, comorbidities, unmanaged symptoms (pain, agitation, dyspnea), weight loss, frailty, recent infections, skin breakdown, hypothermia, and goals of care.33-35 A number of scales are available to measure functional ability, such as the Karnofsky Performance Status Scale and the Palliative Performance Scale.36-38 Although they are validated for patients with cancer, they can serve as a guide for those with advanced noncancer diagnoses. The use of Dr. Reisberg's Functional Assessment Staging Tool has been recommended for use when determining hospice eligibility for those with Alzheimer dementia.28
In the case discussed, Mrs. M does not have an ejection fraction of 20% or less (which is a helpful prognostic guide for HF) or a partial pressure of oxygen less than 55 mm Hg while on oxygen.26,27 However, she has the following issues: more frequent oxygen use, unintentional weight loss, worsening functional status, skin breakdown, and frequent hospitalizations.36-38 Because her goal of care is to avoid further hospitalizations, Mrs. M can be referred for a hospice evaluation and can still remain on warfarin; the lab testing can be arranged through the hospice agency.39 There is no requirement under the Medicare hospice benefit to have a do-not-resuscitate order.40 However, some hospice inpatient units will not accept a patient with a full-code status.
Two physicians (hospice physician member and the individual's attending physician) are required to certify the terminal illness for admission to hospice. An NP cannot provide the certificate of terminal illness.41 Hospice care is given in benefit periods, which include the initial two 90-day benefit periods followed by unlimited 60-day benefit periods.41 A face-to-face encounter is done by the hospice NP or physician up to 30 days prior to the end of the initial 180 days on hospice and up to 30 days prior to the end of each subsequent 60-day benefit period. This helps evaluate ongoing hospice eligibility for a prognosis of 6 months or less if the disease runs its normal course.41
Mrs. M and her children met with the NP. The concept of hospice was explained, and she expressed interest. The hospice nurse liaison reviewed her case, and Mrs. M was deemed an appropriate hospice candidate based on her multiple comorbidities, decreasing functional status, increased dependence on supplemental oxygen, frequent hospitalizations, and skin breakdown. Mrs. M wanted to remain at home as long as possible and stipulated that she no longer wanted to be hospitalized, and she did not want resuscitation or intubation. She did want infections treated if it did not require a hospitalization. Mrs. M was referred to and enrolled in a home hospice program.
General information about hospice services
According to NHPCO 2014 data, 90.3% of hospice care was funded by Medicare versus other payment sources.16 Medicare part A is billed for hospice and all treatments related to the hospice diagnosis. The NP can still bill Medicare Part B for nonhospice diagnoses.42 Medicare Part D would be billed for medications unrelated to the hospice diagnosis.43 For example, if a patient is admitted to hospice for lung cancer and has long-standing comorbid diabetes mellitus requiring insulin, Medicare part D would cover the insulin cost.43 There are subtleties in the admission criteria regarding what is covered under the hospice benefit. The NP can obtain further clarification from the hospice medical director.40
Patients are often referred to hospice at the later stages of their diseases and may still be receiving aggressive therapies for their hospice diagnosis. For example, patients with end-stage HF may be receiving I.V. inotropes or have a left ventricular assist device (LVAD) as an alternative to heart transplant.44,45 Others may have a permanent pacemaker with or without an implantable cardioverter defibrillator, which may require management or deactivation in hospice.46,47 These are good situations to involve palliative care earlier in the course of the disease to help determine goals of care to promote quality of life.48
Some larger hospices have an open access policy that allows individuals to receive interventions, such as hemodialysis (HD), total parenteral nutrition, or mechanical circulatory support (such as LVADs) even if it is related to the primary hospice diagnosis if palliation is the intent and the treatment is not considered curative.39 There also may be cases in which patients can participate in clinical trials related to their hospice diagnosis and still receive hospice care.39 These open access hospices allow individuals to access hospice without giving up treatments that may be palliating their symptoms.39
Due to financial constraints, some smaller hospices may not be able to support individuals receiving these therapies, as hospices receive a daily per diem rate per patient to cover all costs of care related to their hospice diagnosis.39 If the treatment is unrelated to the hospice diagnosis, the hospice would not be responsible for the cost.42 For example, if a patient with lung cancer is receiving HD for comorbid end-stage kidney disease, the hospice benefit would not be responsible for paying for the HD. At some point, such treatments may be discontinued when no longer consistent with the goals of care.
Processes for referral
The level of support to assist with a hospice referral is dependent on the NP's clinical setting. A hospice admission nurse may visit the patient in the inpatient setting if requested. Social workers can also be invaluable resources for facilitating discussions with patients and families and facilitating the referral.49 In areas where there are several hospice programs, families may choose to call the hospices directly.50 The patient receiving homecare services may opt to choose the associated hospice program based on familiarity, comfort, and trust. Each hospice has guidelines for the required referral paperwork. In most cases, the most recent clinical notes, lab results, radiographic tests, and medication lists are sufficient.49
Patient and family education is an important part of the referral process.51 Reassurance of nonabandonment is key, as individuals may feel that they are being referred to hospice because “nothing can be done.”51 It is important to reframe this concept as continued care with a focus on quality of life, symptom management, and psychosocial and spiritual support.51 If the goals of care change, individuals can choose to receive disease-modifying therapy again and revoke the hospice benefit if the hospice is unable to accommodate these treatments.51 The patient can then elect hospice again at a later time.
NPs may refer patients to hospice and remain the attending provider; however, the certificate of terminal illness requires two physician signatures.41,42 This may pose problems for NPs working independently in practice settings without physician counterparts. In these cases, the hospices generally will have two physicians who can sign this certificate of terminal illness.41
How do hospices function?
The hospice team conducts weekly interdisciplinary team meetings to discuss patient-care issues and adjust levels of care. Hospice providers are available 24 hours a day, 7 days a week via phone but only provide limited care in the home (unlicensed assistive personnel).15 Nurses generally visit weekly, but visit frequency will be adjusted based on need. Social work and chaplaincy visits vary based on the intensity of need.15 In some cases, more intensive care with around-the-clock nursing can be delivered at home, but this is for short-term periods while an uncontrolled symptom is being managed.41
The levels of care provided by hospice include routine homecare, continuous homecare, inpatient respite care, and general inpatient (GIP) care, which are each billed at different daily rates.16 According to NHPCO, the levels of care provided by hospices for 2014 were routine homecare (93.8%), GIP (4.8%), continuous care (1%), and respite care (0.4%).16 The hospice may have an inpatient unit available or have contracted beds in local hospitals to provide GIP level of care for symptoms that cannot be managed at home, such as uncontrolled pain, seizures, dyspnea, or delirium. Respite care in an inpatient unit or long-term care setting is available for short-term respite for the caregiver.42
While most individuals would prefer to pass away at home, this may not be possible if adequate caregiver support is not available.52 If patients can no longer be managed safely at home and cannot afford unlicensed assistive personnel, they may choose to transfer to a skilled nursing facility (SNF). However, if the individual does not have Medicaid insurance in addition to Medicare, room and board would not be covered under the hospice benefit.42 The individual may have to revoke the hospice benefit and use the SNF Medicare benefit to have room and board covered. In addition, the individual may have to rely on the facility staff to provide end-of-life care.20
Two months after admission to hospice, Mrs. M had a fall and sustained a skin tear to her right arm. She was spending more time in bed due to fear of falling. Together with her daughter and the hospice team, the decision was made to discontinue warfarin due to risk of bleeding and burden of lab testing. Mrs. M lived for 3 months at home, and due to progressive weakness and increased care needs, she was transferred to a long-term care facility that provided hospice care. She died 5 months after hospice admission.
Improving end-of-life quality
NPs play key roles to ensure that patients with serious progressive illnesses and those at the end of life receive competent care to improve quality of life and decrease suffering. Timely referrals to palliative care or hospice may improve quality of life and decrease unwanted medical care through expert symptom management, psychosocial and spiritual support, and in-depth exploration regarding goals of care.
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