Hospice. Metta Smith & Jenna Nagy. Auburn University School of Nursing
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1 Running head: HOSPICE Hospice Metta Smith & Jenna Nagy Auburn University School of Nursing
2 HOSPICE 2 Abstract Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments. Hospice care neither prolongs life nor hastens death. The goal of hospice care is to improve the quality of a patient's last days by offering comfort and dignity. Interdisciplinary teams of specially trained professionals provide care to patients in several different settings, notably preferred in the patient s own home. This type of care addresses all symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort. Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient's family and caregivers, offering bereavement and counseling services before and after a patient's death. This care delivery system is a beneficial opportunity in reference to cost and quality, confirmed through its description, constituents, and a focused case study of a hospice patient. Keywords: hospice, palliative, diagnosis, outcome, interdisciplinary team, Medicare, Medicaid
3 HOSPICE 3 Hospice Hospice is a type of care that focuses on the palliation of a terminally ill patient s symptoms. These symptoms can be physical, emotional, or psychosocial in nature. Hospice care focuses on bringing comfort, self-respect, and tranquility to people in the final stages of life. Patients symptoms and pain are controlled, goals of care are discussed and emotional needs are supported. Care also involves assistance for patients families and caregivers to help them cope with the situation and provide care and support to keep the patient at home. Hospice care can be given in hospitals or nursing homes, but also can be provided to those who would rather spend their last months and days of life in their own homes. This type of care delivery system is excellent choice for terminally ill patients in regards to cost, quality, and access, which can be seen through its description, components, and a focused case study of a hospice patient. Care Delivery System Description Definition and Description of the CDS With the aging population, the use of hospice care has become increasingly popular in the United States. A recent estimate showed that 1.45 million U.S. patients, accounting for 38.5% of the population that died that year, received hospice services, mostly occurring in the home setting (Candy, Holman, Leurent, Davis, & Jones, 2010). Hospice care is not only popular in the U.S., but also accounts for a considerable proportion of specialized end-of-life care that is provided in other countries (Candy et al., 2010). Specifically, there are currently 25 Alacare Home Health and Hospice offices providing hospice care to an average of 630 patients a day (M. Hawk, Personal communication, October 11, 2012).
4 HOSPICE 4 Hospice care is holistic, supporting patients and their families in medical and symptom management as well as providing emotional and spiritual support, providing advice, and helping plan for the future (Candy et al., 2010). Hospice can also be described as a model of compassionate care for people facing a terminal illness (Candy et al., 2010). Hospice care is palliative, provided at the end of life to improve quality of life in patients with a life-limiting illness and their families (Luijkx & Schols, 2011). According to the World Health Organization, palliative care is defined as active total care of the patient whose disease is not responsive to curative treatment (Jocham, Dassen, Widdershoven, & Halfens, 2006, p. 1189). Quality of life is defined as individuals perceptions of their position in life in the context of culture and value system in which they live and in relation to their goals, standards, and concerns (Jocham et al., 2006, p. 1191). The goal of palliative care is to prevent and relief suffering by early treatment of pain and other physical, psychosocial, and spiritual problems (Candy et al., 2010). Hospice goals are principally concerned with comfort because medical stability is often not attainable. Patient autonomy and dignity are also important components of hospice care (Curseen, 2011). Hospice care is given to patients who have a life-threatening illness with a prognosis of living six months or less (Curseen, 2011). The main reason for choosing hospice care is for patients to be able to achieve the wish to die at home (Candy et al. 2010). The primary medical diagnoses of patients receiving hospice care are cancer, lung or heart disease including chronic obstructive pulmonary disease and congestive heart failure, dementia, debility, and failure to thrive (Candy et al., 2010; Curseen, 2011; Colón, 2012).
5 HOSPICE 5 An alternative to hospice care would be death in an acute care setting, which is where most deaths occur in the developed world (Phillips, Halcomb, & Davidson, 2011). However, few of these deaths will be managed by specialists in palliative care, but rather by health care providers whose primary areas of expertise is not in end-of-life care (Phillips et al., 2011). Because of this, terminally ill patients tend to prefer hospice care over traditional hospital care, unless hospice care presents problems with pain relief or severe dyspnea (Luijkx & Schols, 2011). Another alternative to hospice care is aggressive treatment of the patient s medical condition, in hopes that it can be managed or cured and death can be delayed (Colón, 2012). Considering such unattractive alternatives, the prevalence of hospice use in the U.S. has been reported to be as high as 65% of the terminally ill population (Loke, Rau, & Huang, 2011), and the demand for specialized end-of-life care is increasing (Candy et al., 2010). The idea of hospice care and dying at home is attractive to patients because feeling at home and feeling safe is important for the terminally ill (Luijkx & Schols, 2011). The demand for hospice care is also related to the fact that terminally ill patients want to be in control of their own life and health care (Luijkx & Schols, 2011). Current Issues and Concerns of the CDS Hospice is excellent choice for terminally ill patients in regards to cost, quality, and access. Medicare and private insurance fund hospice care in the U.S., which is then provided by freestanding hospice and managed care organizations (Candy et al., 2010). Once a patient has been accepted to hospice care, the agency pays for medications pertinent to the medical diagnosis and medications used for comfort measures. The hospice agency also pays for durable medical equipment, such as hospital beds, and
6 HOSPICE 6 supplies, such as wound care products (Smith, 2012). In one study, the average cost of hospice care per patient in the last two months of life was $4,761, and the costs per day were 33% lower when care was provided in the home (Candy et al., 2010). In comparison with similar care delivered in the acute care setting, the per person costs of hospice services were 30% lower in the last year of life, 41% lower in the last 3 months of life, and 48% lower during the last month of life (Candy et al., 2010). Implementing hospice care to support a patient and his or her family through dying reduces general health care and costs (Candy et al., 2010). In addition to being less costly, hospice care is also high-quality, with higher patient and family satisfaction than end-of-life care provided in a hospital. According to Candy et al. (2010), U.S. patients receiving hospice care at home have higher care satisfaction, lower general health utilization and costs, and a lower likelihood that a hospital will be the place of death. In fact, evidence reveals that family caregivers felt that hospice services provided care for the whole family and that without this care coping with the support of a loved one would not have been possible (Candy et al., 2010). Studies have shown that compared to experiences of care in a hospital, families using hospice have felt more informed, reported significantly higher satisfaction with care, received more emotional support, and reported their loved one receiving better management of pain (Candy et al., 2010). Patients and families receiving hospice care report receiving superior pain management, more information about the patient s condition, enhanced communication with health professionals, a more understandable explanation of the patient s condition and treatment, provision of personal needs, and treatment with dignity (Addington-Hall & O Callaghan, 2009). Hospice care is available
7 HOSPICE 7 in nursing homes, as well as private homes. In nursing homes patients receiving hospice care benefited from improved pain control and symptom management at the end of life, less fragmented care, and avoidance of inpatient hospital deaths (Curseen, 2011). Access to hospice care depends on a health care provider determining that a terminally ill patient has a prognosis of less than six months to live or patient refusal of curative treatment for a disease. Health care providers should consider hospice services for all patients with advanced terminal disease (Candy et al., 2010). Hospice care then provides access to continuous care services most commonly in a patient s home. Care can also be provided in nursing homes, freestanding facilities, or community facilities (Curseen, 2011; Candy et al., 2010). The presence of a partner or family members who are capable of caring for the patient is an important prerequisite for terminally ill patients to be able to spend the end of their lives at home (Luijkx & Schols, 2011). If living at home is not an option, palliative care units in nursing homes and hospitals are also available (Luijkx & Schols, 2011). The model of health care used in this care delivery system is the case management model. Cases are managed by hospice nurses. Nurses are assisted by chaplains and social workers (Colón, 2012). Provision of Care Nurses have many roles and responsibilities in regards to hospice care. The main roles of the nurse are to serve as case managers, patient advocates, and educators to patients and families (Colón, 2012). National policy requires hospice nurses to see the patient at least once per week. Alacare policy holds the nurse responsible for making home visits twice a week and calling the patient in between visits (Smith, 2012). Nurses are also responsible for getting prescriptions filled for the patient by calling Hospice
8 HOSPICE 8 Pharmacy. Once the family has picked up the medication, the nurse will administer the first dose and teach the family how to administer subsequent doses (Smith, 2012). As the goal of hospice care is providing the patient with a comfortable, dignified death, postmortem care is an important responsibility of the nurse. When a patient s family reports that the patient is deceased, a hospice nurse will go out to the house to ensure that the patient has died. The nurse will then call the health care provider and funeral home, remaining with the family until the funeral home comes to pick up the body. A social worker is then available to the family for up to a year and a half in order to help the family through the grieving process (Smith, 2012).Nursing plays an extremely important role in palliative care by maintaining the patient s quality of life because nursing is not only concerned with survival and decreased morbidity, but with the patient as a whole (Jocham et al., 2006). Interprofessional teamwork is important for the success of palliative hospice care (Phillips et al., 2011). Hospice care is provided by a multidisciplinary team of professional providers composed of nurses and care assistants, doctors, physiotherapists, occupational therapists, dieticians, complementary therapists, chaplains or other religious representations, social workers, and volunteers (Candy et al., 2010). Specific examples of interprofessional roles in hospice care include nursing aides assisting with baths, chaplains and social workers making sure spiritual and emotional needs are met, and social workers helping the family with finances and getting medical leave (Smith, 2012). Focused Case Study A common diagnosis among hospice patients is cancer, accounting for up to 50% of patients receiving hospice care (Candy et al., 2010). In this focused case study, the
9 HOSPICE 9 patient was diagnosed with a malignant neoplasm of the breast at an unspecified site with metastasis to the liver. Past medical history was not available for this patient. In most hospice settings the patients receive palliative care as the only treatment (Luijkx & Schols, 2011), with specific focus on pain management (Candy et al., 2010), as was the case in this patient s hospice experience. Medications for this patient included transdermal Fentanyl for pain, oral lactulose for constipation, oral Marinol for appetite, and oral naproxen for pain. This patient did not have any lab or diagnostic test results. The nursing priorities for this patient were palliative care, focused on keeping the patient comfortable. Teaching needs for the patient and family concentrated on active dying and included the signs of dying and what to expect. The only goals for the patient and family were to keep the patient at home in order to achieve the ultimate goal of a comfortable death. This patient received excellent care in the hospice care delivery system. The interprofessional team worked together to perform the plan of care, and is research demonstrates that interprofessional care significantly impacts care in the hospice setting. Hospice care requires health professionals from different disciplines to work together to provide care for the patient and family (McDonald & McCallin, 2010). Interdisciplinary teams consisting of physicians, nurses, social workers, spiritual care providers, and pharmacists work in a collaborative manner to provide hospice care services and meet each patient s needs (Wilson, Wahler, Brown, Doloresco, & Monte, 2011). Doctors, nurses, and pharmacists work together to provide patient care and to improve the overall functioning of hospice care by identifying medication-related problems, maintaining medication histories, providing and improving symptom control, and providing
10 HOSPICE 10 counseling and psychological support (Wilson et al., 2011). Social workers and spiritual care providers work together to enhance care, especially after the patient has died, by providing bereavement care to the family (Smith, 2012). Research also advocates for making the patient and family part of the interprofessional team, as the patient and family are central to collaborative practice (McDonald & McCallin, 2010). This care delivery system did meet the patient s needs. Research identifies a comfortable death at home as the main goal for hospice patients and their families (Candy et al., 2010). Therefore, it is not surprising that the expected outcome for this patient is to remain comfortable until the time of death and achieve death at home with family. The patient has met the expected outcomes. Since the hospice care delivery system is based on palliative care and achieving a comfortable death, it is not expected that the patient will be discharged until the time of death. Even then, the family will be able to access psychosocial care throughout the grieving process (Smith, 2012). Cost of Care One of the major considerations of hospice is the cost of care. Hospice care generally costs less than inpatient care in a hospital, nursing home, or other facility. This is because with home hospice, individuals pay only for the specific care that they need. The length of stay (LOS) for a hospice patient varies, and the average LOS is 69.6 days (O Neil, Phil, Ettner & Lorenz, 2008). The average cost of hospice care per patient in the last two months of life was $4,761, and the costs per day were lower when care was provided in the home (Candy et al., 2010). Alacare Home Health and Hospice is one option patients can consider when choosing hospice. The average LOS for Alacare hospice patients is days, and
11 HOSPICE 11 $ is the average cost per day (M. Hawk, personal communication, Oct 11, 2012). The reimbursement from Medicare, Medicaid, Commercial, and other insurances is approximately $140 per day for routine hospice in the home, depending on the county where the patient lives (M. Hawk, personal communication, Oct 11, 2012). Hospice is billed and paid by the number of days that a patient is on hospice. The payment is different for inpatient days, respite days, and continuous care. Melinda Hawk, the Director of Business Operations for Alacare Home Health and Hospice, stated that only a few patients over the past years have been self-pay; most every insurance covers hospice care and Alacare has an indigent program for folks without insurance that meet the criteria (Personal communication, Oct 11, 2012). With the payment of $140 per day, the hospice agency must provide all services related to the terminal illness. These palliation services can include: physician services, skilled nursing visits, home health aide visits, medical social worker visits, chaplain services, volunteer services, physical therapy, speech therapy, occupational therapy, laboratory services, radiology services, chemotherapy, radiation, medications, home medical equipment and oxygen, medical supplies, dressings, diapers, and any other service needed to provide care of the terminal illness. The largest expense line item for hospice is most always nursing salaries, wages, and benefits (M. Hawk, personal communication, Oct 11, 2012). However, for some particular cases the medication cost far exceeds the nursing cost. The other expense line items have vast differences from one patient to the next. Palliative chemotherapy, radiation, blood transfusions, and others can cost thousands of dollars for outpatient services, and the length of stay for the patient may be less than a month. In addition, the hospice must provide 12 months of bereavement
12 HOSPICE 12 services to the family or caregivers after the patient passes. The overall goal is to work in the aggregate working to balance out the high cost and low cost patients (M. Hawk, personal communication, Oct 11, 2012). Payors and Reimbursement Defined In the U.S., Medicare, Medicaid, and most private insurance plans cover hospice services. Medicare regulations require that hospice care be provided at home, with only short stays in an inpatient facility. People with Medicare who meet all of the following conditions are covered: are eligible for Hospital Insurance, the doctor certifies that the patient is terminally ill and is expected to have less than six months to live, patient accepts palliative care instead of care to cure the illness, and patient signs a statement choosing hospice care instead of routine Medicare-covered benefits for the terminal illness (Medicare.gov, 2012). Medicaid also covers additional services beyond those provided under Medicare, including nursing facility care beyond the 100-day limit or skilled nursing facility care that Medicare covers, prescription drugs, eyeglasses, and hearing aids. Services covered by both programs are first paid by Medicare with Medicaid filling in the difference up to the state's payment limit (Medicare.gov, 2012). Medicare and private insurance fund hospice care in the U.S., which is then provided by freestanding hospice and managed care organizations (Candy et al., 2010). Once a patient has been accepted to hospice care, the agency pays for medications pertinent to the medical diagnosis and medications used for comfort measures (Taylor, Ostermann, Van Houtven, Tulsky & Steinhauser, 2007). Policies Impacting Cost There are many policies that impact the cost, quality, and care in hospice.
13 HOSPICE 13 The Centers for Medicare and Medicaid Services (CMS) develops Conditions of Participation (CoPs) and Conditions for Coverage (CfCs) that health care organizations must meet in order to begin and continue participating in the Medicare and Medicaid programs. These health and safety standards are the foundation for improving quality and protecting the health and safety of beneficiaries. CMS also ensures that the standards of accrediting organizations recognized by CMS meet or exceed the Medicare standards set forth in the CoPs and CfCs (CMS.gov, 2012). Alacare is accredited by CMS and therefore must abide by these standards (M. Hawk, personal communication, Oct 11, 2012). The Alabama Department of Public Health also has regulations requiring adherence to what is considered local standards of practice (M. Hawk, personal communication, Oct 11, 2012). Almost every year, there is one or more bills passed by Congress that impact payment for hospice services or new regulations that add to the cost of care. For example, the Affordable Care Act mandated face to face encounters be performed by a physician or nurse practitioner before a patient could be recertified for a third certification period. This regulation added an average of $3.50 per day cost to patients cared for by Alacare. There are other regulations in the Affordable Care Act that will become effective between now and 2017 (M. Hawk, personal communication, Oct 11, 2012). Hospice Costs for Focused Case Study In the focused case study, the patient was diagnosed with a malignant neoplasm of the breast with metastasis to the liver. The average LOS for cancer patients is days. Melinda Hawk stated that Alacare does not discriminate accepting any diagnosis, therefore there is no attempt to cost out individual diagnosis; Alacare only looks at the
14 HOSPICE 14 total patient population (Personal communication, Oct 11, 2012). A comfortable death at home is the main goal for hospice patients and their families according to research (Candy et al., 2010). Therefore, the patient has met the expected outcomes since they will not be discharged and will remain comfortable until the time of death at home with family. The patient bill analyzed was for August 1 thru August 31, The majority of the costs examined on the patient bill belonged to routine home care, which amounted to $4038. In addition to routine home care, the skilled nursing visits cost $130 per visit, while the home health aide visits cost $70 per visit. The total cost for the month of August for this patient was $ These costs were all covered by Medicare. The outcome for this particular patient is unknown; however, Melinda Hawk specified the best quality of life an individual can have until death is the desired outcome. It could be the resolution of a long-standing family issue prior to death, giving closure and comfort to both the patient and family. Alacare staff has even assisted with making last wishes come true prior to death; the staff helped arrange for one recent patient to sing on the stage of the Grand Ole Opry before her death (Personal communication, Oct 11, 2012). Conclusion Care that focuses on the palliation of a terminally ill patient s symptoms in the home setting is an ideal option for patients. Hospice care is a holistic approach focused on making the final stages of life comfortable and dignified for patients and their families. Research confirms that a comfortable death at home is the main goal for hospice patients and their families (Candy et al., 2010). This care delivery system provides an exceptional choice for terminally ill patients in regards to expense and quality. Hospice is
15 HOSPICE 15 also financially a possible option since Medicare, Medicaid and most private insurance plans cover the cost of hospice. Hospice provides an excellent alternative for patients to consider, which can be confirmed through its description, components, and a focused case study of a hospice patient.
16 HOSPICE 16 References Addington-Hall, J. M. & O Callaghan, A. C. (2009). A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: Results from a survey using the VOICES questionnaire. Palliative Medicine, 2009(23), doi: / Candy, B., Holman, A., Leurent, B., Davis, S., & Jones, L. (2010). Hospice care delivered in nursing homes and in dedicated hospice facilities: A systematic review of quantitative and qualitative evidence. International Journal of Nursing Studies, 48(2011), doi: /j.jnwstu Centers for Medicare and Medicaid Services, (2010). Conditions for Coverage (CfCs) & Conditions of Participations (CoPs). Retrieved from website: Colón, G. J. Personal reference. September 17, Curseen, K. A. (2011). Hospice and long term care partnership. ABSN Update, 15(5), Hawk, M. Personal Reference. October 11, Jocham, H. R., Dassen, T., Widdershoven, G., & Halfens, R. (2006). Quality of life in palliative care cancer patients: A literature review. Journal of Clinical Nursing, 2006(15), doi: /j x Loke, S. S., Rau, K. M., & Huang, C. F. (2011). Impact of combined hospice care on terminal cancer patients. Journal of Palliative Medicine, 14(6), doi: /jpm
17 HOSPICE 17 Luijkx, K. G. & Schols, J. M. (2011). Perceptions of terminally ill patients and family members regarding home and hospice as places of care at the end of life. European Journal of Cancer Care, 2011(20), doi: /j x McDonald, C. & McCallin, A. (2010). Interprofessional collaboration in palliative nursing: What is the patient-family role? International Journal of Palliative Nursing, 16(6), Medicare.gov, (2012). Hospice & Respite Care. Retrieved from website: O Neil, S., Phil, M., Ettner, S., & Lorenz, K. (2008). Paying the price at the end of life: A consideration of factors that affect the profitability of hospice. Journal of Palliative Medicine, 11, doi: /jpm Phillips, J. L., Halcomb, E.J., & Davidson, P. M. (2011). End-of-life care pathways in acute and hospice care: An integrative review. Journal of Pain and Symptom Management, 41(5), doi: /j.jpainsymman Smith, J. Personal reference. September 24, Taylor, D., Ostermann, J., Houtven, C., Tulsky, J., & Steinhauser, K. (2007). What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program? Social Science & Medicine, 65, doi: /j.socscimed Wilson, S., Wahler, R., Brown, J., Doloresco, F., & Monte, S.V. (2011). Impact of pharmacist intervention on clinical outcomes in the palliative care setting.
18 HOSPICE 18 American Journal of Hospice & Palliative Medicine, 28(5), doi: /
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