Recent controversy underscores why advance directive tools and discussions are more important than ever.
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| Fay A. Rozovsky |
The health care reform debate has unearthed a topic that has energized many: the idea that Medicare would be used to expedite the death of elderly Americans. It started with a provision in a health care reform bill that called for Medicare to cover end-of-life counseling from care providers. Critics noted that a booklet prepared by the Department of Veterans Affairs (VA) encourages veterans to discuss openly with family members and with attending care providers their values and wishes for end-of-life care.
Some linked the proposed law that finances end-of-life discussions with what they saw as the VA's "directing" veterans to consider values, quality of life and feelings about being a burden to loved ones.
Cooler heads have since prevailed and a better explanation of the proposed legislation has been communicated. Still, the debate has reopened a lingering concern among policy, legal and health care experts. Why is it that advance directives are not used extensively in the United States? Is it a matter of misunderstanding? Lack of access? Lack of knowledge? A failure to act on such information by care providers? Or is it all of the above?
Given the ongoing debate, the time may be ripe to "reset" the discussion of advance directive tools, especially with a view to high-quality, safe patient care.
It seems highly likely that attention to advance directives will grow as the country continues to debate health care reform. A study of 4.7 million Medicare enrollees found that 30 to 35 percent of Medicare funds are spent on patients with chronic illnesses during the last two years of their lives (The Dartmouth Atlas Project, 2006). These costs represent a sizable opportunity for savings, particularly if monies are being spent on procedures and treatments that do not comply with patient wishes.
Where do obstacles to advance directives lie? In two general areas:
Patients find it difficult, inconvenient and often intimidating to develop advance directives. Many states have established "boilerplate" advance directives, such as living wills, health care proxies, do-not-hospitalize requests and so forth. Some include details about values, wishes and desired treatment or comfort measures. For consumers, however, these state-legislated advance directive forms are often intimidating. Legal-sounding terminology and the lack of flexibility can be off-putting. The idea that many think they must have a lawyer prepare or review advance directive documents—for a fee—is also an impediment.
Likewise, patients who are in the midst of a difficult course of treatment or who have been told that their disease has spread may have second thoughts about previously well-crafted, legislative-style advance directives. Costs, time and fatigue may preclude patients from revising their advance directive tools to better reflect their "new thinking" about end-of-life decisions.
Providers may not have access to advance directives when and where they need it. Even when patients have taken the time to put advanced directives in place, they seldom have the intended effect. Studies have found that caregivers have access to patients' living wills as infrequently as 16 percent of the time (Journal of the American Medical Association, 1995).
Advance directive documents that have been executed properly may languish in desk drawers or bank safety deposit boxes. In other cases, they might be securely—albeit remotely—saved on computer hard drives. Sometimes patients are transferred from one care facility to another and, in the process, the advance directives cannot be found. Similarly, patients are moved from one location within a health care facility to another and, again, the advance directives do not follow them to the new units.
In the middle of acute situations, it is of little value to know that patients have advance directives that cannot easily be located.
So, how can the health care field overcome these obstacles?
For starters, leaders at the national level are attempting to reframe the discussion about advance directives and provide incentives to individuals for appropriate consideration of their options. At a March 5, 2009, White House health care summit, for example, Sen. Henry Waxman acknowledged the high costs of care at the end of life and suggested that reduced insurance premiums might be made available to patients who at least consider advance directives—regardless of any decisions made (American Medical News, March 23, 2009).
On May 22, Sens. John D. Rockefeller IV and Susan Collins introduced the Advance Planning and Compassionate Care Act of 2009. This legislation would, among other initiatives, authorize Medicare and Medicaid reimbursement for advance care planning, require the portability of advance directives from one state to another, and require any existing advance directives to be prominently placed in a patient's medical record.
Even as patients are encouraged to examine end-of-life issues, however, the industry must take steps to make sure any direction given is readily available to providers.
There are, in fact, a range of solutions available for increasing accessibility. Succinct advance directives embedded in an electronic health record (EHR) is one solution. Such an approach can be found in a suite of consent-style communication tools contained in the iMedConsent application by Dialog Medical, Atlanta—the software tool employed by the VA to assist with preparing advance directives and storing those documents in the patient's EHR.
In such a system, patients are able to update and revise their advance directive documents, with software date- and time-stamping new versions so the current version replaces all previous advance directives. In practice, the software tool is used after patients have read the afore-mentioned VA booklet, which has proven to be a tremendous resource for understanding care choices but unfortunately became the target of controversy in the press.
Another approach is to link the advance directive to a medical order. Such is the approach of the Physician Orders for Life-Sustaining Treatment (POLST) programs, a care strategy developed in Oregon to ensure that advance directives are followed. Programs endorsed by POLST now exist in seven states. In Oregon, physicians issue medical orders consistent with patient wishes.
A flexible approach is to encourage patients to complete a values history statement that provides detailed information for surrogate decision-makers. It is a powerful instrument that can be revised as often as patients decide to do so. Coupled with advance directive tools, it provides a blueprint for end-of-life decisions.
Perhaps the most audacious idea is to tie advance directives to milestone events such as obtaining or renewing a driver's license, completing a voter registration form or signing up for health care insurance coverage. Such a bold step would take much encouragement and education, especially in view of the recent debate over health care reforms.
Although it's difficult to undertake a deeper examination of the value that advance directives offer, it is nevertheless important that both patients and providers do so. This close scrutiny will reveal that, contrary to recent fear-mongering, advance directives do not lead to injudicious treatment decisions or the withholding of desired care. Rather, such tools ensure that patient wishes are honored and that care is delivered where needed and desired.
Studies of nursing home patients, in fact, find that the simple presence of advance directives reduces resource utilization while affecting neither patient/family satisfaction nor mortality (JAMA, 2000). These findings suggest that the presence of an advance directive, combined with the availability of that information to providers, may reduce costs with little or no impact on the overall quality of patient care.
Indeed, the health care community would be wise to acknowledge that advance directives are part of the communication continuum that is the foundation for informed decision-making, a lasting reminder of the need to respect and act on patient autonomy regarding end-of-life choices.
Fay A. Rozovsky, J.D., M.P.H., is the president of the Rozovsky Group in Bloomfield, Conn., and author of Consent to Treatment: A Practical Guide, 4th edition (Aspen, 2007).
This article 1st appeared on January 19, 2010 in HHN Magazine online site.
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