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Problems and Solutions in End-of-Life Healthcare

Barry Patel, for HealthLeaders Media, March 20, 2009

In 2007, Medicare expenditures reached $440 billion, or 16% of all federal spending. With healthcare reform a high priority for the new administration, any reform initiatives will certainly include approaches to manage the growth of this enormous program. The solution must start with where the majority of the Medicare budget is spent. The last 30 days of a beneficiary's life account for the highest portion of Medicare dollars per member. In fact, one-fourth of the entire Medicare budget is spent in the last year of a patient's life and of that amount, 40% is spent in the last 30 days.

There are also large variations in end-of-life care from one region to another. Researchers at Dartmouth Medical School discovered staggering variations in the number of services that patients with severe chronic disease receive at the end-of-life, depending on the hospital, region, or state. These variations were not dependent on the severity of patients' conditions. For example, an elderly person spent an average of 10.6 days in the hospital during the last two years of life in Bend, OR, but 34.9 days in Manhattan.

There are many reasons for the high proportion of dollars spent and variation in end-of-life care. Over the last several decades, new life-saving and life-prolonging technologies have become available to healthcare providers. These new technologies—such as sophisticated respirators, feeding devices, and pharmaceutical products—have the ability to keep patients alive longer, albeit sometimes in a vegetative state. Their impact on the patient's quality of life is still questionable, and it is widely accepted that many patients receive more services at the end-of-life than they need or want.

Further complicating this matter is that the reimbursement system provides incentives for healthcare professionals to impart more end-of-life care than necessary, even though the patient's health status and quality of care may not be improved. Variations in end-of-life care across different regions can be explained, to a great degree, by differing reimbursement rates across the country and the extent of—or lack of—end-of-life care planning. The major reason for high cost, unnecessary, and often-unwanted health services is that a patient's choice for types of treatment at the end-of-life are rarely clearly documented and respected.

Clearly documented advance directives can help ensure that patient choices for end-of-life treatment are honored and that unnecessary, unwanted healthcare services are avoided. Federal legislation was passed in 1990 to affirm patients' rights to document these end-of-life wishes and designate a healthcare decision maker, should they be unable to speak for themselves. This legislation, the Patient Self Determination Act of 1990, requires hospitals to ask all patients at time of admission about their advance directives.

Despite passage of this legislation, only 15% to 20% of patients have an advance directive, according to an article in the Archives of Internal Medicine. Further, even when patients have an advance directive, 65% to 76% of physicians were unaware of these patient choices. Consequently, people end up getting healthcare services in the last days of life that they would not have wanted.

Statistics show that 80% of people in the United States die in a hospital or nursing home bed, even though Gallup polls show that 90% of those surveyed would prefer to die at home. Why are patient's choices regarding their end-of-life care still not being met?

Regardless of the specifics of an end-of-life experience, there is often tremendous confusion around the episode. Family members do not know that an advance directive exists for their loved one. If the patient is incapacitated, the person or people named as the healthcare surrogate(s) may not understand their role in the decision making process. An example of the heartache that can ensue is the infamous Terry Schiavo case, in which the conflict about her care, between the husband and the parents of the patient, lasted for years and was only resolved by the courts.

Some patients may have advance directives, but fail to inform hospitals about them or don't bring them to the hospital. In these cases family members often don't know where the documents are located, or it may be stored in a safe deposit box to which no access is available. Most disturbing is that even when advance directives are given to healthcare providers, the clinicians are sometimes afraid to recognize them because of vocal and emotional disagreements among the patient's family or out of fear of lawsuits.

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