Hospice care is delivered in varying settings inclusive of home hospice care, hospital-based hospices, independently owned hospices, and long-term care hospice facilities or nursing homes. Home care hospice services are provided to patients by a loved one or primary caregiver who is responsible for providing care to patients. The family member of caregiver in home hospice care undergoes training to deliver care, which is supplemented with regular visits from hospice staff to ensure symptoms are managed properly and patients receive the care and services needed (“Who Provides and Pays for Hospice Care,” 2017). Hospice care can also occur in a hospital setting thereby giving patients increase accessibility to hospice support services and resources designed to monitor and control patient symptoms. Hospital-based hospice care is dependent on the hospital as some hospitals have a unit designated for hospice care while other hospitals employ a team of hospice care professionals to deliver hospice care in any hospital unit the patient is currently in (“Who Provides and Pays for Hospice Care,” 2017). Once patients are comfortable, they tend to return to home hospice care.
Some hospice organizations are independently owned with facilities that offer inpatient home hospice care services. This is beneficial for patients who do not have a family member or caregiver that can provide care for them on a 24/7 basis (“Who Provides and Pays for Hospice Care,” 2017). Long-term care hospice facilities and nursing homes are comprised of smaller units that deliver hospice care. These hospice care facilities either have highly trained staff specializing in hospice care or tend to make arrangements for specialized hospice team members within independent hospice organizations and home health agencies to provide hospice services (“Who Provides and Pays for Hospice Care,” 2017). Regardless of the health care setting in which hospice care is delivered, hospice care organizations are designed to deliver safe, quality patient-centered care to patients with a life expectancy less than six months (“How Hospice Works,” 2017). However, patients who live longer than six months can remain in hospice care as long as the hospice doctor and medical director within the hospice organization recertify the existence of a terminal illness with a maximum life expectancy of six months (“How Hospice Works,” 2017).
The historical underpinning of hospice care is based on the initial development of hospice organizations. The advent of hospice care dates back to the mid-1800s when the Founder of the Dames de Calaire in Lyon France, Jeanne Garnier, described the ability to care for dying patients (“History of Hospice Care,” 2016). In 1879, the Irish Sisters of Charity adopted hospice care as a concept upon opening a hospice center located in Dublin, Ireland known as Our Lady’s Hospice. A couple of decades later, in 1905, St. Joseph’s Hospice was established in Hackney, London, England (“History of Hospice Care,” 2016). In 1948, Dame Cicely Saunders initially began working with patients suffering from terminal illness in the U.S. and introduced specialized care for dying patients in 1963 to a group of chaplains, social workers, medical students, nurses at Yale University (“History of Hospice Care,” 2016). However, hospice care did not become widely recognized until 1967 when a former nurse and medical social worker named Dame Cicely Saunders established St. Christopher’s House (“History of Hospice Care,” 2016).
In 1974, Senator Frank E. Moss and Senator Frank Church introduced legislation to enhance the provision of federal funding for hospice care programs; however, the legislation failed to be enacted (“History of Hospice Care,” 2016). Twelve years later, Congress made the Medicare Hospice Benefit permanent, which was first provisioned in 1982 as part of the Tax Equity and Fiscal Responsibility Act. States were granted the opportunity to decide if they wanted to incorporate hospice care within their current Medicaid programs (“History of Hospice Care,” 2016). Hospice care now became readily available to residents of nursing homes who were considered terminally ill. Nearly a decade later, in 1993, the health care reform proposal under Clinton’s presidency integrated hospice as a guaranteed benefit on a national scale (“History of Hospice Care,” 2016). This was soon a part of the health care continuum. In 1997, the pervasiveness of the end-of-life movement highlighted quality of life and the importance of increased physician education and public awareness. This formed the basis of the models for end-of-life care and palliative care, concept of care and hospice philosophy (“History of Hospice Care,” 2016). In 2002, the Department of Veteran Affairs (VA), launched a program to increase accessibility to hospice and palliative care services (“History of Hospice Care,” 2016). Educational opportunities were also offered to physicians and other clinicians providing health care services to veterans.
According to Hinds Hospice, an estimated 3,200 different hospice programs exist throughout the Guam, Puerto Rico and the United States (U.S.) (“Patient Care Services,” 2017). Such programs include both inpatient hospice programs within a facility or organization as well as outpatient hospice programs in the patients’ home. Findings describing the location of hospice patients revealed that approximately 66.4% of hospice patients received care at their place of residence, of which private residence, nursing home, and residential facility were identified as the place of care for 41.6%, 18.3%, and 6.6% respectively (“Patient Care Services,” 2017). When corresponding symptoms and pain becomes unmanageable at home or the patient no longer has a caregiver to provide around the clock care, the patient enters into short-term inpatient hospice care. In 2011, 26.1% of patients received hospice care at hospice inpatient facilities while 7.4% received care at acute care hospitals (“Patient Care Services,” 2017). Inpatient hospice care facilities also aid in providing quality patient-centered care to terminally ill patients. In addition to providing home hospice care, about one in five hospice agencies also operate a dedicated inpatient unit or facility (“Patient Care Services,” 2017). A majority of inpatient hospice facilities are either freestanding or located on a hospital campus, both of which provides an array of inpatient as well as residential hospice care services (“Patient Care Services,” 2017). Regardless of the type of hospice care program and services, the goals of hospice organizations are to provide end-of-life care for terminally ill patients and their families by offering personalized hospice care, spiritual services, bereavement counseling, and volunteer services.
Personalized hospice care services are performed to assist patients with reaching and sustaining a desired level of comfort. This care is overseen by a hospice team of professionals who are responsible for managing the patients pain and associating symptoms (“Patient Care Services,” 2017). Patients are thereby provided the highest quality of hospice care to assist patients, patient family members, and caregivers with the emotional, spiritual, and psychosocial aspects of dying (“NHPCOs Facts and Figures: Hospice Care in America,” 2012; “Patient Care Services,” 2017). This allots patients and their family the ability to effectively cope with end-of-life challenges as they arise.
Bereavement counseling and support involve services designed to mitigate grief and loss. In hospice organizations, bereavement is offered to the patients’ family for a total of one year following their loss (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Individual counseling and other support-related services are also available. Hospice organizations are committed to safeguarding the provision of bereavement counseling and services for the patients’ family as well as the community if deemed necessary. A significant promotion of hospice care organizations (92.2%) tend to offer bereavement services and support to the community, of which approximately 14.3% of community members actually receive bereavement support (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Bereavement services in the form of education and support are often used by family members and caregivers. In 2011, approximately two family members sought bereavement services offered by their loved one’s hospice organization following death (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Although bereavement support is dependent on each particular hospice organization, support typically includes mailings, follow-up telephone calls, and visits one year post-death (“NHPCOs Facts and Figures: Hospice Care in America,” 2012).
The U.S. hospice movement was founded by volunteers and there is continued commitment to volunteer service. According to the National Hospice and Palliative Care Organizations (NHPCOs), estimates showed that an estimated 450,000 hospice volunteers were responsible for providing more than 21 million hours of hospice care services (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). The services provided by volunteers is used to assist the patients’ family members and caregivers by giving them an emotional, mental, and physical break or to run errands (“Patient Care Services,” 2017). Volunteers provide services by allocating time to patients and their family members, performing clerical work to support clinical services, and assisting with fundraising opportunities (“NHPCOs Facts and Figures: Hospice Care in America,” 2012).
Hospice organizations focus on administering safe, quality end-of-life patient-centered care to terminally ill patient populations that vary in accordance to age and gender. Findings demonstrated that well over half of all hospice patients were female (56.4%), a relative increase from the female hospice patient population of 56.1% in 2010 (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Alongside gender differences, hospice patients also vary by age. In 2011, the largest population of hospice patients were 85 years of age and older (39.3%) followed by patients between the age of 75 and 84 years old (27.6%) (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Moreover, approximately 16.3% of hospice patients were between 65 and 74 years of age while 16.0% of patients ranged from 35 to 64 years old (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). In accordance to such findings, two groups of hospice patients in varying age groups were between 25 and 34 years of age (0.4%) and under the age of 24 years old (0.4%) (“NHPCOs Facts and Figures: Hospice Care in America,” 2012).
Since the establishment of hospice care organizations in the U.S. during the 1970s, patients diagnosed with cancer accounted for the largest proportion of admissions to hospice organizations. However, in today’s health care sector, cancer diagnosis is associated with 37.7% of admissions into hospice organizations (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Today, less than 25% of deaths in the U.S. are attributed to cancer as more and more patients are diagnosed with other terminal diseases, illnesses, and medical conditions. In 2011, the four fundamental reasons why patients were readily admitted into hospice organizations include lung disease (8.5%), heart disease, (12.5%), dementia (13.9%), and unspecified debility (13.9%) (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Other reasons correlated with admittance into hospice organizations include amyotrophic lateral sclerosis (0.4%), HIV/AIDS (0.2%), kidney disease (2.7%), liver disease (2.1%), non-amyotrophic lateral sclerosis motor neuron (1.6%), and stroke or coma (4.1%) (“NHPCOs Facts and Figures: Hospice Care in America,” 2012).
The most prominent form of financing among hospice organizations is Medicare following its enactment by Congress in 1982. A total of 93.2% of hospice organizations in the U.S. have been certified by the Centers for Medicare and Medicaid Services to provide hospice care and other related services in accordance to the Medicare hospice benefit (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). In 2011, a total of approximately 84.1% of hospice patients were covered by Medicare insurance with a 87.9% percentage of Medicare covered hospital days (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). Additional forms of financing hospice care organizations include Charity Care or uncompensated care (1.3%), managed care or private insurance (7.7%), Medicaid hospice benefit (5.2%), self-pay (1.1%), and other methods of payment (0.7%) (“NHPCOs Facts and Figures: Hospice Care in America,” 2012).
The primary staff positions within hospice organizations include bereavement, clinical patient care (direct), non-clinical administration, nursing clinical care (indirect), and volunteer coordinators. Nursing staff continues to comprise the largest percentage of full-time employees, while bereavement staff represent one of the smallest groups of hospice care personnel. Direct clinical patient care is comprised of 66.3% of personnel, of which 4.3% are chaplains, 18.8% are home health aides, 0.6% are nurse practitioners, 30.2% are nursing professionals, 2.9% are physicians, and 8.6% are social workers or employed in social services (“NHPCOs Facts and Figures: Hospice Care in America,” 2012). In relation to indirect clinical patient care, bereavement, non-clinical administration, personnel, and volunteer coordinators are comprised of 4.3%, 21.3%, 7.2%, and 6.3% of hospice care staff members respectively (“NHPCOs Facts and Figures: Hospice Care in America,” 2012).
Hospice organizations face a number of administrative issues. Administrative issues relative to evaluation and research, finance, patient and family care, personnel, professional assistance, nursing shortages, public relations as well as structure and function must be adequately addressed by administrators within hospice organizations to ensure proper use of resources and the ultimate success of the organization’s hospice program. In accordance to organizational structure and function, governance of dependent hospice organizations is often problematic in nature (Davidson, 2014). Patients within such hospice organizations are typically gathered from other departments such as chaplaincy, dietary units, medicine, oncology and gynecology, physical therapy, social services, and surgery so the dependent hospice organization must meet the same level of structure as these departments. Some hospice programs particularly those within clinical departments including nursing or oncology encounter issues linked with program autonomy and viability (Davidson, 2014).
From a financial perspective, funding must not be entirely dependent on the institution. Hence, dependent hospice programs should be self-sufficient and ensure that administrators within hospice organizations generate sources of local funding in addition to revenue from hospice patients and third party payments (Davidson, 2014). One key administrative issue related to finance and space stems from the fact that some hospice programs fail to negotiate with the institution during its initial development. This may pose potential threats to the institutions’ own financial viability if the size and shape allocated for the hospice program is not properly interpreted (Davidson, 2014). Statistically information must be gathered and used to confirm a significantly high rate of occupancy. If such a rate is not achieved, the institution may be forced to put non-hospice patients in hospice beds to help offset financial loss and safeguard the organizations financial viability (Davidson, 2014).
Professional assistance issues may arise if hospice organizations either lack or have inadequate accounting, agreements, consulting, contracts, insurance, legal counsel, and quality of care review. In an effort to protect hospice patients against potential risks, automobile, liability, malpractice, property, and workmen’s compensation are needed to protect hospice personnel while on the job (Davidson, 2014). Consulting poses administrative issues particularly if consultants only offer hospice organizations open-ended contracts for open-ended services. As an alternative, administrators should focus on attaining fixed price contracts from consultants to ensure that work is completed accurately and within a specific timeframe (Davidson, 2014). Another noted administrative issue involves the attainment of verbal agreements and contracts. Although verbal agreements and contracts provide a good starting point for negotiation, all agreements and contracts must be in writing (Davidson, 2014). Administrative issues correlated with patient and family care often arise when admission and discharge information is not specified and incorporated within the statement of criteria (Davidson, 2014). Charting and reporting may be burdensome and costly if the most suitable method of charting alongside the items to be included in the charting, the design and supply of forms, and the procedures for completing them and distributing the copies, methods of collecting information, and the procedures for preparing and submitting reports need to be established (Davidson, 2014).
Despite the benefits of ensuring patients with life-threatening medical conditions are properly cared for in the most ethical manner, several challenges also emerge. One of the main challenges involves making critical decisions regarding caregiving during the end-of-life (Oliver et al., 2013). The most difficult aspect is trusting the information that has been given to caregivers since every decision is vital especially when the patient is no longer deemed capable of making their own decisions. Caregivers or family members must then make the most informed decision as to when to stop aggressive treatment and safeguard the highest level of comfort (Oliver et al., 2013). This process is often cumbersome as caregivers and family members are forced to acknowledge that death is near. Nurses within hospice care organizations often encounter family members who disagree. In order to prevent such challenges, patients should make sure they have an advanced directive so their caregivers and family are not forced to make these rather strenuous decisions alone (Ingebretsen & Sagbakken, 2016; Oliver et al., 2013).
In addition to the patients’ family and caregivers, nurses caring for patients in hospice care also face keen challenges. Ingebretsen and Sagbakken (2016) note the emotional challenges nurses often encounter. In a qualitative study involving 10 nurses within two different hospice organizations, findings revealed that hospice care nurses felt as though they had to balance between their own individual feelings and those of their patients on a continuous basis (Ingebretsen & Sagbakken, 2016). One nurse proclaims “it was difficult being there with them. In one way, you really want to do something but there is nothing to do. You cannot relieve them from their suffering. One must only be there together with them. In a room filled with pain and sadness” (Ingebretsen & Sagbakken, 2016, para. 14). It is therefore important for hospice care nurses to develop and achieve a heightened degree of emotional distance thereby avoiding the long-term implications associated with the fact that hospice nurses may witness suffering and death daily.
Davidson, G. (2014). The hospice: Development and administration (2nd ed.). New York, NJ: Routledge – an imprint of the Taylor & Francis Group.
History of hospice care. (2016, March 28). National Hospice and Palliative Care Organization. Retrieved from http:/www.nhpco.org/history-hospice-care
How hospice works. (2017). Medicare.gov. Retrieved from https://www.medicare.gov/what-medicine-covers/part-a/how-hospice--works.html
Ingebretsen, L. P., & Sagbakken, M. (2016). Hospice nurses’ emotional challenges in their encounters with the dying. International Journal of Qualitative Studies on Health and Well-Being, 11(1), 31170. doi: 10.3402/qhw.v11.31170
NHPCO facts and figures: Hospice care in America. (2012). National Hospice and Palliative Care Organization. Retrieved from http://www.nhpco.org/sites/default/files/public/ Statistics_Research/2012_Facts_Figures.pdf
Oliver, D. P., Demiris, G., Wittenburg-Lyles, E., Gage, A., Dewsnap-Dreisinger, M. L., Luetkemeyer, J. (2013). Patient safety incidents in hospice care: Observations from interdisciplinary case conferences. Journal of Palliative Medicine, 16(12), 1561-1567. doi: 10.1089/jpm.2013.0104
Patient care services. (2017). Hinds Hospice. Retrieved from http://www.hindshospice.org/ patient-care-services.html
Who provides and pays for hospice care? (2017). American Cancer Society. Retrieved from https://www.cancer.org/treatment/findings-and-paying-for-treatment/choosing-your-team/hospice--care/who-provides-hospice-care.html