An end of life care program is a program which is put in place when a patient is seriously ill with a medical condition that will end in their death. This is also known as palliative care, and can take place in a nursing home, a hospice or in the comfort of the patient’s home. An end of life care program sees to not only the medical care of patients in the final days or hours of life, but covers the broader prospect of treating all those with a terminal condition that has become advanced, progressive and incurable.
When it has been determined by a patient’s health care team that the patient’s cannot be cured, an end of life care program is generally put into place. This means that although they will no longer get medication to try and heal the condition, they will still receive palliative treatment, which means that they will receive treatment, and medications that will control pain and any other symptoms they may have such as nausea, breathing problems, constipation, and diarrhea. This type of care focuses on making the patient comfortable in their final days.
These services are provided where it is best for the patient, be that a hospital, nursing home, a hospice or within their own homes. Wherever the treatment is given, there are various services available to the patient ant their family, including assistance with the psychological, medical, and spiritual issues surrounding dying. These circumstances affect individuals differently, and each has their own unique needs for support and information, as does the family.
Making Decisions
End-of-life care requires that a range of decisions be made about the patient’s right to self-determination of treatment and of life, palliative care, medical experimentation, the ethics and efficacy of hazardous or extraordinary medical interventions, and the ethics and efficacy of continued routine medical interventions. Many of these decisions will be informed by technical and medical considerations, economic factors and bioethics. The hospital will also consider the condition of the patient, rationing and the allocation of hospital resources. An end of life care program is also subject to considerations of patient autonomy, and ultimately the final decision whether to pursue aggressive treatment or withdraw life support rests with the patient and their family.
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A World Health Organization (WHO) report in a 1990 publication called on all governments to ensure that healthcare workers are adequately trained in palliative care and the relief of pain. They recommended that palliative-care courses be made an obligatory part of the basic training and certification of all healthcare workers.
A 1997 report, entitled “Approaching Death,” by the Institute of Medicine (IOM) of the National Academy of Sciences identified huge gaps in the knowledge of end-of-life care which called for urgent attention from social science, biomedical, and health service researchers. This study pointed out a dire lack of education regarding end-of-life care as the major barrier to improvement of services and the establishing of a national end of life care program.
Recommendations From The Institute Of Medicine’s Approaching Death Report
- Individuals who have advanced and potentially fatal conditions should be able to expect and receive skilful, reliable and supportive care in an end of life care program.
- Nurses, physicians, social workers, and other healthcare professionals need to commit themselves to improve the care given to dying patients and must use their existing knowledge effectively to prevent and relieve pain and other symptoms
- The deficiencies in the end of life care are as the result of problems with the system, and this means that consumer groups, purchasers of healthcare and policy-makers need to work with healthcare researchers, organizations, and practitioners to:
- Beef up methods for assessing the quality of life and other outcomes of palliative care for dying patients and their loved ones
- Formulate improved tools and strategies for improving the quality of the care and for holding healthcare organizations accountable for end of life care
- Revise methods to finance care so that those that offer a good end of life care program can be encouraged and sustained rather than frustrated
- Reform State medical board policies and practices, drug prescription laws and onerous regulations that hinder effective use of opioids such as morphine to relieve pain and suffering
- Changes in undergraduate, graduate and continuing education need to be initiated to ensure that practitioners have the required knowledge, skills and attitude to provide the best palliative care.
- Palliative needs to become, at the least, a defined area of education, expertise, and research
- Other recommendations were that priorities for strengthening the knowledge base for end-of-life care need to be defined and implemented, and there needs to be continuing public discussion surrounding the modern experience of dying.
Medicare End Of Life Care Program
Medicare is funded entirely by the federal government through voluntary premiums paid by beneficiaries, general revenues, and payroll taxes. It provides mainly acute care services to the elderly and also to younger individuals with disabilities with significant work histories.
Medicare is the primary health insurer for more than 80% of individuals who die each year in the United States. Approximately 28% of Medicare expenditure goes on aiding patients in their last years of life.
Medicare offers various formats of the end of life care program, including hospice care, which is the primary focus of its end-of-life care policy. Research has found, however that most Medicare decedents do not make use of this end of life care program, with only 23% of them taking advantage of this service in 2000. Many of them choose to spend their last days at home, although cancer patients account for half of all hospice enrolees.
Medicaid
Medicaid essentially provides long-term and health care cover to children, parents, individuals with disabilities, older individuals with low incomes and very few financial assets, and individuals who have high medical expenses.
Medicaid is jointly funded by the state and federal governments and is administered by the states under federal guidelines. States are mandated to provide a core set of services that include hospital, nursing home, physician, and home health care. They can also opt to offer various other services including outpatient drugs, hospice and long-term care in the home and the community. Unfortunately, states can also place limitations on any services, which could prove to be problematic for individuals who are dying.
The role that Medicaid plays in providing an end of life care program depends on the population of the area. Children, parents and adults with disabilities and no substantial work experience rely almost exclusively on Medicaid for financing their end-of-life care, if they meet Medicaid’s financial eligibility criteria. Those who are elderly and the younger disabled Medicare beneficiaries who are eligible for both Medicaid and Medicare generally rely on Medicare for physician, hospital, and most hospice services cover during the end-of-life.
Mostly, Medicaid’s end of life care program consists of funding services such as outpatient prescription drugs and long-term care; they also pay the Medicare premium and cost-sharing requirements. Approximately 35% of the elderly who die use nursing home care during the last year of their life, whilst others use community and home-based services, such as personal care. Medicaid also offers the optional hospice end of life care program, which tracks Medicare’s benefit very closely, and which is specifically designed to serve dying beneficiaries.
Various End Of Life Care Programs
There are various end-of-life care programmes that are primarily financed by a combination of Medicare and Medicaid, such as:
The Community Medical Alliance (CMA)
The Community Medical Alliance (CMA) is a Boston, Massachusetts-based health care system contracted with the Massachusetts Medicaid program. It provides comprehensive benefits to individuals with severe disabilities, such as muscular dystrophy, and beneficiaries with advanced AIDS, in return for capitated payment for this end of life care program.
On Lok
On Lok is a non-profit managed-care plan that provides frail older persons who reside in the community, but are sufficiently disabled to qualify for nursing home coverage, with health and long-term care. There are five sites in San Francisco, California, and it is the model for the Program of All-inclusive Care for Children and the model for the Program of All-inclusive Care of the Elderly, and includes an end of life care program.
EverCare
EverCare is a subsidiary of United HealthCare Corporation and is a Medicare managed care plan. It provides preventive and primary care to individuals who reside in assisted living facilities and nursing homes via physician and nurse practitioner teams.
Florida Suncoast Hospice
The Florida Suncoast Hospice is a non-profit organization that has been providing services to patients in Pinellas County, Florida for the past 20 years. It currently serves 1,200 patients on a daily basis. It services three categories of Medicaid beneficiaries; children and adults who are in their end of life period, AIDS patients, and nursing home residents who are dually eligible for both Medicaid and Medicare.
When it comes to time to consider an end of life care program for your loved one, it is important that all circumstances and all parties be taken into consideration. If your loved one does not have a living will then you will need to sit down with them and discuss what they would like, possibly in the presence of the patient’s physician. After all, the whole idea behind an end of life care program is to make the patient as comfortable as possible in their last days.
