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Contact Us Spring 2001; Volume 2, Number 1
Features: Health Care for the Elderly
 
The Critical Condition of End of Life Care in the United States
Andrea Magyera
page 1 | page 2 | endnotes

End of life care is described by the World Health Organization as "the active total care of patients whose disease is not responsive to curative treatment."1 In such care, "the control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount."2 End of life care is a very complex division of health care because it involves two primary parties in preparing a person for death with comfort: the patient and the caregiver. Moreover, it is erroneous to believe that end of life care is only a reigning issue in the minds of the elderly, or those facing old age. Rather, end of life care sparks dilemmas in health care delivery for the elderly, terminally ill children and newborns, severely ill psychiatric patients, and those in prolonged comas.4 For the purpose of this paper, however, the primary focus will be on end of life care for the elderly.

The time of preparation that is addressed in end of life care is also known as the "transition phase," and it is unique to this area of medicine. The transition phase in the minds of patients, caregivers, and families marks the distinction between curing and healing. When someone is dying, a cure is no longer possible, but a consoling form of healing, consisting of appropriate, humane and compassionate care, is both possible and extremely important.5 During the transition phase, ongoing discussions between clinicians, patients, and patients' families become vital, as does shifting the goal of treatment from curing the patient to preserving his comfort and dignity.6 Patients who know they are dying seek comfort, closure, family support, and quality services.7

Since death and the transition phase are universal, end of life care needs to develop and grow as a division of the U.S. healthcare system. This paper will examine end of life care in the United States and observe its systems' assets as well as its faults. It will also search for ways to improve end of life care in the United States.

The United States: Current Challenges

Overall, the system of long-term care in the United States is poor, due to extremely high costs and minimal government assistance. When one looks at long-term care in the U.S., one finds that the Medicaid program does provide long-term care for its beneficiaries. This care, however, usually results from Medicare beneficiaries "spending down" their resources on regular long-term care and then meeting the requirements to receive the government provisions. Moreover, the division of end of life care within the U.S. healthcare system has received particular criticism for its lack of pain relief, poor communication, and limited education of providers.

Before attempting to improve end of life care, one must examine trends in causes of death in the population as a whole. Americans, together with other citizens of the world, are living longer, which is a mark of success in both public health and medical care. The problem, however, is that the last few years of a person's life are now being marked by progressive illness and disability.8 Americans are primarily dying from heart failure, obstructive lung disease, stroke, dementia, or cancer, and less often from infections, accidents, and organ system failures, which were major causes of death in the past.9 The key difference is that while the killers of yesterday were quick and destructive, today one is more likely to follow a longer road of debilitation. This begins with a diagnosis, then weight loss, shifting to being bed ridden, and finally, to death. Most people live for years with a diagnosis and gradually are faced with the functional limitations of their illness, such as the inability to work, self-care disability, and repeated hospitalizations.10

Does the above description of end of life care meet the actual desires of Americans? Sixty-one percent (61%) of Americans polled say that they want to avoid a drawn-out death and they emphasize their fear of being "kept alive."11 Dying in a hospital would fulfill these fears for many people. Therefore change and improvement are needed.

In the late 1980s, the Robert Wood Johnson Foundation began the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). This $28 million dollar project concluded that America's end of life care system was poor, and that people were dying in pain without the proper do-not-resuscitate orders (DNR) or advanced directives that are needed to fulfill final wishes.12 The study also found that family needs were not being properly addressed and that the high costs of care were not being noticed. Clearly, the end of life care system in America is facing problems and the situation is raising concerns, even for average citizens. Over half of Americans polled believe that the United States is doing a poor job of involving families in the decision making process, providing pain relief, respecting dignity, and controlling the costs that are encountered.13

Primary Roles in End of Life Care

As mentioned above, the two central players in end of life care are the patient and the caregiver. The first actor to be considered is the patient. Studies have been done in the United States to determine the wishes of patients encountering the end of life. There are five factors that have been found to be most important to dying patients.15 The first is to receive adequate pain and symptom management. Next is to address the desire of the patient to avoid inappropriate prolongation of dying. A third factor is to allow the patient to feel in control of the situation. The fourth factor is to allow the patient to relieve the burden on loved ones, and the final factor that is deemed important to those dying is to strengthen relationships and communication with their loved ones. One can conclude that these elements would be important to most patients. Everyone needs dignity, respect, compassion and attention in the difficult times of facing death.

The caregiver is the second primary role in end of life care. This role is carried out by physicians and nurses. The main functions of the caregiver are to respect the wishes of the patient, provide high quality and continuous care, give adequate pain relief, and to address any psychological, social and spiritual needs of the patient.16 The physician needs to be willing to offer therapy that is not always traditional, such as alternative medicine, in areas such as meditation and acupuncture. The physician also needs to make the crucial decision as to when to provide access to hospice care.

While the role of the physician is important, it is the nurse who provides most of the direct care when dealing with an end of life patient. Undergraduate nursing students need to be trained in several aspects of delivering health care in the end of life setting. Not only do they need to be able to address physical, psychological, social and spiritual needs of patients at the end of life, they should also be able to combine all of these skills in order to provide an overall end of life care approach.17 Nurses should provide care, comfort, and counseling to patients and family members. They are a valuable source of stability for all when times are hard. They are needed to manage pain and anxiety as well as to provide assistance with suffering, grief, loss, and bereavement.18

Three Areas for Improving End of Life Care

Now that the two primary roles in end of life care have been examined, we will explore what areas of end of life care in the U.S. are in need of improvement. Pain relief, communication skills, and education improvements are three areas on which to focus, since some frightening statistics have been presented when analyzing these areas in the U.S. end of life care system.

For example, forty to fifty percent (40-50%) of terminally ill patients are found to suffer moderate to severe pain.19 Is this acceptable? It should not be, for although death is approaching, end of life care should be a time of approaching peace and tranquility. Even worse, seventy-six percent (76%) of oncologists surveyed admitted their lack of knowledge about pain management.20 How can we be administering high levels of care when our otherwise most skilled providers are not educated in this area? In a 1997 Gallup poll, it was shown that more than seventy percent (70%) of individuals polled claim to have a fear of dying in pain, alone, or without the chance to say good-bye.21 Americans should not be faced with unnecessary fear of pain when they are approaching the end, therefore, pain relief in our country must be improved.

One reason why caregivers do not provide adequate pain relief is that they fear the negative side effects of addiction. But this theory is not rational, for by the time symptoms of addiction surface, the patient will likely be close to the end of life and the consequences of dependency would not occur. In a survey sponsored by the Mayday Fund, "more than two-thirds of Americans said that high doses of pain medications, including narcotics, should be used for people experiencing severe pain, even when they were asked to consider the possibility of addiction."22 Actors in the health care system should listen to the people and open the lines of communication, for the people are saying that they want higher levels of pain relief.

The next area of care in need of improvement is communication. Communication is essential for an end of life care system. Caregivers need to listen to the desires of the patient, for when one is dying providing them with the most comfort and compassion possible is most important. A survey by the American Geriatric Society found that eighty-two percent (82%) of responding physicians felt that physicians should be responsible for initiating discussions on end of life material.23 Physicians are the link between patients' desires and the care that is administered, and it is necessary for them to be aware of their patients' wishes. Clearly, we need dramati improvement in this area, for as found by the People's Medical Society, "only forty-seven (47%) of doctors knew when their patients preferred to avoid cardiopulmonary resuscitation (CPR), and forty-nine percent (49%) of people who wanted CPR to be withheld did not have DNR written on their charts."24

The final area in need of improvement is education. Education of providers is an essential key to improvement of the U.S. end of life care segment of the health care system. Education should take place not only on the level of the physician and nurse, but also the pharmacists, social workers, mental health professionals, and clergy.25 End of life care is clearly a complex, cross-disciplinary area of medicine. In 1998, a review of the 50 top-selling textbooks from several medical specialties was conducted, and a search was undertaken for the presence and adequacy of content in the 13 different end of life care domains. Only twenty-four and one-tenth percent (24.1%) of information presented in the textbooks was deemed helpful.26 Clearly, improvement in the area of textbook content, residency training, and questions on licensing exams would improve the system. Dying is an extremely important part of life for both the patient and the patient's family; therefore, medical education on dying should be improved in order to provide better care.27

Hospice Care

Hospice is a form of high quality alternative care that could prove to be a solution to the end of life care dilemmas in the United States. Hospice care is a unique form of care for the terminally ill. It is an opportunity for those in end of life care to face death with the support of family members, friends and healthcare professionals. The psychological and spiritual needs of the patient, as well as adequate levels of pain relief are the focus of this alternative care.28 Hospice care is built upon the ideas of teamwork and partnership between the caregivers and the patient as well as family. Hospice care focuses nearly as much on the grieving family as it does on the terminally ill patient.29 Basic foundations of care in hospice are similar to those mentioned above in regard to general end of life care practices, in that the focus of coordination, 24 hour attention, and sensitivity to the desires of the patient and family are primary goals.30

A study performed by the American Geriatrics society found that ninety-one percent (91%) of families whose family member died after receiving hospice care had positive comments, while fifty-one percent (51%) commented positively on nursing home care.31 Hospice is a comforting way for all those involved in end of life care to prepare for eventual death.

page 1 | page 2 | endnotes
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