Hospice or home, is there really a choice? The answer is yes.
End of Life Decision Making
End of life decision making can be difficult and most people choose to live at home as long as possible prior to entering a long-term care facility. This decision making is often complicated due to long term illnesses and the need for hospice care. The majority of long-term care decisions concern the terminally ill and elderly center on the degree of care they will need. Most residential options include remaining in one’s own home (with professional support), living with relatives (family assistance from children or close relatives), or moving to a retirement center, group home, or nursing home, or hospice. Some secondary support options include senior daycare, professional services for the elderly or terminally ill that are at home. These services include meals-on-wheels, informal caregivers (family members), and formal caregivers, such as visiting nurses or therapists. The services that are available to the elderly person depend deeply on his or her financial resources. As well, the availability of services also depends upon the person’s eligibility for public and private long-term care programs. For these reasons, long-term care decisions should not be restricted to the idea of moving a person from their home to a nursing home or hospice (Mccullough and Wilson, 1995). There are numerous options available for decisions concerning long term care with regard to hospice settings. The following reports discuss ancillary services in hospice care both at home or in facilities.
Hospice or home, is there really a choice? The answer is yes. There are many different means of hospice care. This decision making is however complicated by factors including financial constraints and the condition of the individual. In order to make proper decisions in this manner, either as a patient or as a caregiver one needs to understand these factors.
Physical and Mental Condition
Hospice care typically takes place in the last six months of life. This form of care is differentiated from other forms of care because it does not seek to extend or treat the illness but instead is aimed at making the person feel as comfortable as possible. Depending on the physical and mental condition of the person, the choice of home care or hospice care can be made.
Many people who need hospice care are the elderly. One of the trends in long term elderly care is to provide the essentials for living such as cooking, cleaning, eating, bathing, and toileting. Many of these individuals are experiencing debilitating mental states such as dementia, catatonic paralysis resulting from stroke, or blindness that require consistent care over time” (Kane and Caplan, 1993).
For the elderly who are in long term living facilities, hospice care is typically provided in the form of an ancillary service. This trend in hospice care has been driven by the change in healthcare culture to the patient-centered approach. Indicative of the new culture, assisted living facilities are expected to meet hospice responsibilities. This change in service has been the result of a change in thinking in which the ‘resident’ is viewed as the primary stakeholder. This vision is directed through the philosophy of Person-centered care, which encourages older adults and caretakers to voice choice in self-determined ways in their lives and to value, “dignity, respect, self-determination, and purposeful living” (Dana and Olsen, 2007). For these individuals who are already in assisted and long term care facilities, in most instances, hospice care is included in the living arrangement.
The other population of hospice care patients is the terminally ill who are not elderly. The demographics of these individuals vary tremendously and these individuals (or caregivers) must decide whether they need hospice or ancillary hospice services. The trend for many of these individuals has been to stay at home with family and friends. However, this decision is contingent on the person’s health and mental condition. This decision is difficult because it may require the assistance of family or other caregivers. Ancillary services such as medication delivery and equipment can be provided in many instances. Ultimately, the services needed in many cases will be dependent on the financial capability of the person.
The decision to remain at home is complicated also by the ability of caregivers who are not professional. If a patient is relying on informal caregivers such as a spouse or adult children, the capacity of these individuals must be called into question. Often these informal caregivers have many other responsibilities, such as children and job security. These circumstances bring to light the ethical issue for informal caregivers of justifying limits when providing care services. Again this leads back to the financial ability of the patient in many cases since informal caregivers might not be enough.
This difficulty in deciding hospice care is often frustrated by the view of the patient, family, and informal caregivers in which they only perceive two alternatives which both have serious costs attached to them. In reality, the financial constraints are limiting but there are choices. Depending on the insurance the person has, hospice care may or may not be included as part of a package. In other instances, hospice care may not be covered and depending on the person’s physical and mental state or their need for specific types of services that Medicaid and insurance might not cover. The cost of hospice care in almost all instances can be paid for either by insurance or Medicaid. The choice of staying at home may increase personal costs if professional caregivers are needed for tasks beyond care such as pain relief and comfort based care for example cooking or cleaning services.
The Healthcare Perspective
At home hospice care presents two major benefits to the healthcare provider. First, there is less cost because the person is not paying for round the clock care. Even with paying for ancillary services such as medication delivery and physician monitoring, the cost is still lower than staying in a hospital or in a professional hospice which can cost upwards of $10,000 per month (Andrews, 2010).
The second major benefit of at home hospice care is that it provides hospitals and professional hospices with the ability to more effectively treat individuals who are not physically able to function or communicate. This increases the efficiency of care tremendously
The choice to stay at home and receive ancillary hospice care has options beyond moving into a hospice. For instance, the patient is not uprooted in their final weeks or months of life. Staying at home provides a patient with comfort and privacy of the place they know best. The choice to stay at home or enter a professional hospice will depend mainly on the level of care needed but in many instances, hospice care is often only a less than 60-day process (Andrews, 2010). Most individuals who choose hospice care will have the ability to remain at home providing they the physical and cognitive abilities as well as limited support for family and friends.
Andrews, M. (2010). Hospices, Wary Of Costs, May Be Discouraging Patients With High Expenses Retrieved from Keiser Health News http://khn.org/news/012213-michelle- andrews-on-hospice-care/
Dana, B, & Olsen, D. (2007). Effective leadership in long term care: the need and the opportunity. Retrieved from http://www.achca.org/content/pdf/ACHCA_Leadership_Need_and_Opportunity_Paper Dana-Olson.pdf
Koren, M. J. (2010, February). Person-centered care for nursing home residents: The culture- change movement. Health Affairs, 29(2) p. 312
Kane, R. A., And Caplan, A. L., Eds. Ethical Conflicts In The Management Of Home Care: The Case Manager’s Dilemma. New York: Springer Publishing Company, 1993.
Mccullough, L. B., And Wilson, N. L., Eds. Long-Term Care Decisions: Ethical And Conceptual Dimensions. Baltimore, Md.: Johns Hopkins University Press, 1995.
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