Hospice Care

Hospice care provides compassionate care for terminally ill patients by offering emotional support, pain management, and spiritual support. According to Hughes, & Smith (2014), hospice care lives by the mantra that everyone has a right to die with dignity and to undergo a pain-free death. As such, hospice care is based on caring for the patients as opposed to curing the patients. At most times, such care is provided from home to ensure comfort and contact with the family. However, it can also be performed in hospitals, nursing homes and the hospice facilities (Hughes, & Smith, 2014). Before being put on hospice care, there should have been a terminal illness diagnosis mostly with a life expectancy of fewer than six months. In addition, two physicians must certify the patient as being terminally ill. Globally, the family of the person receiving hospice care makes most of the decisions in hospice care. As such, the hospice team develops a care plan and the family to ensure that the needs and desires of the patient are met at all times (Giovanni, 2012). In addition to identifying the kind of care needed, the plan also highlights all the procedures, medication and equipment needed to assure the patient of comfort care.

History of hospice care

The term hospice has a medieval origin, during which it was used synonymously with a shelter or place of place of rest for people who were on a journey and exhausted. In modern times, the term was first used to refer to care extended to dying patients in London. Dame Cicely Saunders is recognized as the first physician who popularized hospice care through her work of tending to terminally ill patients at St Christopher hospice in London (Neighbours, 2011). In 1963, Saunders exported her idea of caring for dying patients to the United States during one of her visits to Yale University. In her lecture, she targeted nurses, medical students, and social workers. She would use pictures of terminally ill patients such as those in the late stages of cancer to demonstrate the importance of tending to patients at the advanced stages of critical illnesses (Neighbours, 2011). In her demonstrations, she showed that hospice care could lead to dramatic improvement in the symptoms of patients under hospice care, compared to those who were receiving ordinary or no treatment at all. Saunders’ lectures initiated a chain of events, which eventually resulted in the development of hospice care, as it is known today.

In 1965, Florence Wald, then dean of Yale school of nursing, contemplated adopting Saunders ideas. Afterward, she took a leave from her position as dean to dedicate time studying about hospice care.  Almost simultaneously, Dr. Elizabeth Kubler-Ross, titled On Death and Dying, published the first comprehensive book on the subject (Hoy, 2016). In the following years, Kuber-Ross’ book became an international bestseller, indicating a growing worldwide curiosity regarding hospice care. However, Kubler-Ross was of the idea that home care offered better treatment options that hospital-based care for dying patients (Hoy, 2016). She further suggested that terminally ill patients needed to be allowed to decide between home and hospital-based care. This was during the formative years of autonomy as a principle of health care.

In 1974, Florence Wald and two colleagues founded the Connecticut hospice based in Bradford, Connecticut. It was the first hospice care institution in the United States and among the first around the world. In the same year, the Senate through senators Franck Moss and Frank Church introduced the first legislation targeting the funding of hospice care programs (Hoy, 2016) However, the Senate failed to enact this bill perhaps because the subject of hospice care was still alien in the United States. By 1978, the US Department of health had sponsored a number of studies on the viability of hospice care. The same year, a task force was launched to investigate how the cost-effectiveness of such programs in the US. The task force concluded that hospice care was both viable and vital to the well-being of terminally ill patients. Further, it concluded that hospice care required lower operational costs that ordinary care. The following year, the Healthcare Financing Administration (HCFA) launched demonstration projects at 26-hospice facilities throughout the US with similar aims as the taskforce by the US department of health. In 1980, the Joint Commission on Accreditation of Hospitals (JCAHO) received a grant from the WK Kellog Foundation to carry out studies on the status of hospice and hence establish accreditation standards for such facilities (Cloyes et al., 2015). Owing to the increase in hospice research, the Congress finally set aside funds to cater for hospice care via the Tax Equity and Fiscal Responsibility Act (1982). Given this positive gesture, JCAHO was finally able to establish and roll out accreditation standards for hospice care facilities across the nation.

In 1986, the Congress made the Medicare Hospice Benefit a permanent fund and additionally, raised funding for hospice care by 10 percent. Further, states were encouraged to incorporate hospice in their Medicare programs. This resulted in widespread adoption of this specialized care in many nursing homes in all states. In 1989, the Government Accounting Office published a report that indicated that 35 percent of qualifying hospices were Medicare-certified (Cloyes et al., 2015). One of the reasons given for this high compliance rate was that HCFA had established affordable payment rates for hospice facilities. In the same year, government funding for hospice was raised again to 20 percent with promises of future raises per the Omnibus Budget Reconciliation Act (1989). In 1991, hospice care had become so crucial that the Mission Commission proposed the inclusion of hospice care as part of retirement benefits package. Other significant efforts were witnessed in the years that followed, including enacting the Indian Health Care Improvement Act to facilitate studies into the feasibility of hospice. Finally, in 1993, President Clinton’s government recognized hospice as a nationally acknowledge benefit so that to date, it is a component of the healthcare continuum (Cloyes et al., 2015). Today, numerous hospice care facilities have been established to cater for the different types of critical illnesses, including cancer, HIV and heart diseases. In 2014, the US celebrated 40 years since the launch of the first hospice care in the country.

Benefits and barriers to hospice care

Hospice care has at most times been associated with death thus receiving a lot of opposition from the public. Contrary to popular belief, hospice care is not a final surrender by the family of the ill patient (Sandsdalen, et al., 2016). In fact, it helps the family to prioritize the needs of the patient thus offering quality care at all times. By staying in a familiar environment, the patient feels safe, comfortable and secure at all times. In a bid to relieve the anxiety of the family and the patient, hospice care provides support in a personalized manner. In addition, hospice care provides an opportunity for managing the symptoms in an informed way thus improving the quality of care. This is because hospice care occurs after diagnosis has taken place. According to Sandsdalen, et al., (2016), in the US hospice, care focuses on the last six months of survival thus offering quality end of lie care. As such, the caregivers have a conclusive medical history of the patient and are able to provide the care that is needed. It is evident that people who receive hospice care lead more quality live than those who do not.

Through hospice care, the family is able to deal with the emotions that surround such trying times. This is included in the care plan that is created by the medical caregivers. Dealing with a terminally ill patient has never been easy and it is important that the family go through guidance and counseling sessions to help them deal with the situation. As such, the family is prepared psychologically by the hospice care to accept the death of their loved one. In addition, bereavement services can be offered to the family of the patient. This can be in form of community workshops, group sessions or individual counseling sessions.

Numerous studies have revealed that indeed hospice care leads to cost savings in the later months of life. A study conducted by Kelley et al., (2013), revealed that hospice care reduces the Medicare costs for patients enrolled mostly in their last 53-105 days. Such patients are often transferred from the hospital settings to hospice care facilities close to their family. This leads to a reduction in the use of hospital services thus contributing to the savings. According to Kelley et al., (2013), terminally ill patients who get enrolled in hospice care experience less invasive procedures and do not use the facilities in the intensive care unit. Led by Ziad Obermeyer, researchers studied the total costs spent by hospice and non-hospice patients in 2011 (Life Matters Media, 2014). The study included 18000 patients diagnosed with cancer and enrolled in hospice care. The study also involved a similar number of patients who were not enrolled in a hospice care unit. Life Matters Media (2014), report that the total cost spent by those under hospice care was $62,819 compared to $71517 by those in the non-hospice group. This is clear proof that hospice care is a strategy that can be used to save the costs spent on medical care. Therefore, there should be campaigns aimed at increasing the number of Medicaid beneficiaries. Leaders should also support an increase in the duration that people can be placed under hospice care.

Barriers to hospice care

Lack of education

The public is not sufficiently educated on the full benefits of hospice care. This is a situation that has contributed to the stigma surrounding hospice care. As mentioned earlier, hospice care is often seen as a surrender by members of the family of the patients. As a result, it is closely associated with death. According to Hughes, & Smith (2014), even medical caregivers are sometimes uncertain on the facts surrounding hospice care. For instance, it is a common belief that hospice care should only be granted during the last weeks of life as opposed to the six-month requirement.

Communication

At most times, health care professionals develop a personal bond with the patients. This is a strong emotional bond that sometimes impedes their ability to place them under hospice care. Healthcare professionals often find it challenging to initiate the conversation on hospice care to trigger a loss of hope with the patient. They also feel as though they have failed in the duties of providing medical care to the patients by placing them under hospice care. This lack of proper communication skills remains an obstacle to hospice care.

Enrollment policies

At most times, patients with serious illnesses require complicated hospice care facilities. Most hospices have at least one enrollment policy that limits the number of enrolled patients. For instance, some hospices do not enroll patients who are on a chemotherapy treatment or those that are on tube feeding. Most hospices assert that a treatment such as chemotherapy is a form of curative treatment that should be offered in hospitals. Furthermore, it is often required that patients in hospice care forego any reimbursements for curative treatments. Another reason for hospices having restrictive enrolment policies is the costs involved with such complicated procedures. This is mostly experienced by small hospices that have low patient enrolment numbers. For large hospices, having a larger patient volume enables them to spread the financial risks evenly. Hospices should be encouraged to have nonrestrictive policies to ensure that everyone has access to their services.

Cultural barriers

Cultural barriers have often been linked to low enrollment numbers in hospice care. There are cultural taboos that form misconceptions on hospice care. For instance, within the Harlem community, people believe that enrolling in a hospice care is interfering with God’s plan in the life of humankind (Bughn, 2016). They believe that God is responsible for how and when we die and therefore hospice care goes against their faith. Such kind of beliefs reduce the rates of hospice care enrolment in most countries. It is therefore imperative that the staff at hospice care facilities explain to them that they are not interfering with God’s plan but just providing quality care to the terminally ill patients.

Costs involved in hospice care

In establishing the costs involved in hospice care, the domains to be considered are home-based care, informal care, hospice care and community or home-based care. Some of the governmental agencies cover a large percentage of hospice care costs. Some of these are Department of Defence (DoD), Medicaid, and Medicare (Gardiner et al., 2017). In a hospital set up, the costs involved are ambulatory care, outpatient admissions, emergency room visits and inpatient admissions. On the other hand, community or home-based care involve costs that accrue for the provision of hospice care in such a setup. Some of the costs are community nurses, visits from general practitioners and other ancillary costs. According to Gardiner et al., (2017), for countries that have comprehensive health care coverage the state or insurance providers cover most of the hospice care costs. On the other hand, the patients or their families cover the costs involved in hospice care within the developing countries.

Hospice Care in Various Countries

Hospice care is acclaimed as a medical subspecialty in many countries including the US, New Zealand, Australia, Canada, England, Ireland. The US is leading in palliative care research and implementation. However, other nations are fast catching up, owing to the United Nation’s Economic, Social, and Cultural Rights’ recognition of palliative care as a primary responsibility of states. Also, in 2013, hospice care was included in the World Health Organization’s (WHO) list of essential medicines. This section offers a detailed comparison of hospice care between UK and US.

Comparing the United States and the United Kingdom

The modern hospice movement has its roots in the work of Cicely Saunders, founder of UK’s St Christopher hospice. Though the US’ hospice was modeled out of St Christopher, it has evolved so that there is a notable difference between the UK and US hospice movements. Since the conception of the idea by Saunders in the 1960s, the UK has taken numerous steps in advancing palliative care in the country. To begin with, hospice care in the US is mainly provided in the patient’s home while in the UK it is provided at the hospice care facilities. However, Dixon et al., (2015), observes that the present trend in the UK is to provide these service at the patient’s home. Hospice care in the UK is mainly provided by charitable organizations who receive funding from the community. Additionally, Hospice UK collaborates with these organizations for best healthcare outcomes (Dixon et al., 2015). Conversely, in the US, Medicare Hospice benefit is the chief source of funding for hospice care. As such, donations and grants only compliment the Medicare funding. In 2016, it was estimated that nearly 200,000 people were under hospice care, which represents about 44 percent of the total number of people in need of palliative care (Cea et al., 2016).  Additionally, hospice offered bereavement support, directly and directly to over 41000 people in the same year. The number in the US stands at 43 percent and increases sharply among patients who are 65 years and older. Over one-third of all hospice patients in the US is 85 years or older care (Cea et al., 2016). Another difference relates to regulations whereby in the UK, hospice care is mainly self-regulated. That is, each hospice care facility has its own criterion which informs its operations. In the United States, the HCFA provides the accreditation standards for hospice facilities. As well, different states have various regulatory standards for hospice.

Conclusion

The benefits of hospice care date back to the 20th century and continue to be applied in the modern society. In the last six months before the death of a patient, it is imperative that family and the caregivers offer quality care. Hospice care comes in handy because it helps in reducing the costs involved in the medical area. Despite the strides made by embracing hospice care, several barriers stand in the way of its full implementation. Key among them is the enrollment policies that are applied to the facilities offering hospice care. This factor depends on the size of the hospice care and the number of funds received from the facilitators. There are also certain myths surrounding hospice care that limit the rate at which the public make use of the hospice facilities. All these are barriers that can be addressed by educating the public on its benefits.

References

Baughn, R. (2016, September 26). Getting To Yes: Overcoming The Barriers To Hospice Care | HuffPost. Retrieved from https://www.huffingtonpost.com/rosemary-baughn/getting-to-yes-overcoming_b_12197952.html

Cea, M. E., Reid, M. C., Inturrisi, C., Witkin, L. R., Prigerson, H. G., & Bao, Y. (2016). Pain assessment, management, and control among patients 65 years or older receiving hospice care in the US. Journal of pain and symptom management52(5), 663-672.

Cloyes, K. G., Berry, P. H., Martz, K., & Supiano, K. (2015). Characteristics of prison hospice patients: Medical history, hospice care, and end-of-life symptom prevalence. Journal of Correctional Health Care21(3), 298-308.

Dixon, J., King, D., Matosevic, T., Clark, M., & Knapp, M. (2015). Equity in the provision of palliative care in the UK: A review of the evidence.

Gardiner, C., Ingleton, C., Ryan, T., Ward, S., & Gott, M. (2017). What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review. Palliative Medicine31(4), 323-337.

Giovanni, L. A. (2012). End-of-life care in the United States: current reality and future promise-a policy review. Nursing Economics30(3), 127.

Hoy, W. G. (2016). Making Sense of Grief. In Bereavement Groups and the Role of Social Support (pp. 31-56). Routledge.

Hughes, M. T., & Smith, T. J. (2014). The growth of palliative care in the United States. Annual review of public health35, 459-475.

Kelley, A. S., Deb, P., Du, Q., Aldridge Carlson, M. D., & Morrison, R. S. (2013). Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Affairs32(3), 552-561.

Life Matters Media. (2014, December 7). Hospice Leads To Better Care, Lower Costs At End Of Life: JAMA – Life Matters Media. Retrieved from https://www.lifemattersmedia.org/2014/12/hospice-leads-better-care-lower-costs-end-life-jama/

Neighbors, C. (2011). Pioneering days of palliative care. European Journal of Palliative Care18(5), 223-227.

Sandsdalen, T., Grøndahl, V. A., Hov, R., Høye, S., Rystedt, I., & Wilde-Larsson, B. (2016). Patients’ perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study. BMC palliative care15(1), 79.

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