Advancing Advance Directives
Healthcare coverage has historically focused on providing acute life-sustaining services, but there has been growing attention paid to improving end-of-life care. This attention has been increasing as of late in healthcare reform, with other recommended changes being proposed. Of course, end-of-life care is critical from a cost perspective—both emotional and financial.
This issue is especially keen at this time given the concern by many over healthcare costs, specifically concerns with ineffective treatment at the end of life. Studies have shown that approximately one-third of Medicare expenditures in the last year of a person’s life are spent in the last month.1 A high proportion of those costs come from life-sustaining procedures and care such as ventilator use and resuscitation.2 For these dollars, little results in improvements in the quality and length of life for seniors. As studies on regional variation from Dartmouth have demonstrated, there is not always a correlation between cost and quality; in fact, sometimes the inverse is true.3
Despite the cost both to society and the government, from an individual standpoint a 2006 survey showed that more than 33% of all Americans would want their physicians to do everything possible to extend their lives, regardless of price.4 This is a significant increase from 1990, when 20% believed this.4 This is probably due in part to reduction in out-of-pocket expenditures and increases in technological advances, which have resulted in increased opportunities at less of an individual financial cost.
There are opportunities for improvements in end-of-life care. Advanced cancer patients who have end-of-life discussions with their doctors appear to have better quality of life in their final days and pay significantly less for that care, according to a new study published in the Archives of Internal Medicine.5 This conclusion is supported by a study that supported the same direction as the literature, in that there is real potential for end-of-life services to reduce expenditures associated with hospitalizations, while at the same time accommodating the expressed preferences of patients.6
Healthcare costs for patients who had end-of-life conversations with their doctors were estimated to be an average of 36% lower in the last week of life than for patients who did not talk with their doctors. There was no difference in survival or in psychological distress between the two groups. However, patients who did not have end-of-life conversations with their doctors experienced more physical distress in the final week of life, as reported by nurses and caregivers.5
So, both the emotional and financial costs can be improved through a greater focus on end-of-life care. There is a belief that promoting policies that increase communication between doctors and patients could lead to better quality of life and lower costs at the end of life.
Governmental attention on advance directives started in 1990 with the Patient Self-Determination Act (PSDA). PSDA is a federal law passed by Congress that requires Medicare-reimbursed facilities to inform all adult patients about their rights to accept or refuse medical or surgical treatment and the right to execute an “advance directive.” PSDA defines an advance directive as a written instruction such as a living will and durable power of attorney for healthcare recognized under state law relating to the provision of healthcare when the individual is incapacitated.
The recent healthcare reform legislation in the form of the house bill titled America’s Affordable Health Choices Act (HR 3200) makes attempts to promote advance directives. It moves the focus from Medicare-reimbursed facilities to physicians being reimbursed for providing advance directive and end-of-life consulting to all of their older patients.
The American Geriatrics Society recently released a statement regarding the value of advance care planning to clear up misinformation regarding the sections dealing with advance directives and end-of-life discussions.7 These provisions have been mischaracterized as care planning consultations that include “euthanasia,” that physicians would be required to “recommend a method for death,” and that such consultations would be “mandatory every five years.” These statements are incorrect and have been the source of much media and public focus.
Instead, Sec. 1233 “Advance Care Planning Consultation” provides payment for provider discussions with patients regarding advance directives and end-of-life care. In addition, it also provides for training for healthcare professionals across the continuum of care about the goals and use of orders for life-sustaining treatment.
This need for education is especially sensitive given the disparity that occurs in end-of-life care. In one published study from the Archives of Internal Medicine, researchers analyzed data from 158,780 Medicare patients who died in 2001 and found that despite dying of similar causes, black and Hispanic patients appeared to have significantly higher end-of-life costs than white patients.8 Most of this was due to greater use of life-sustaining care and procedures. The researchers were not able to look at the reasons for these differences in the study.
A recent article published in the Journal of the American Geriatrics Society by Bharat Kumar9 titled “A Final Act of Gratitude” found that even with extensive exposure to intense end-of-life care, a patient chose to accept extensive end-of-life therapy for the sake of his family. The article concluded by saying that “The fact that someone would be willing to prolong his suffering to demonstrate his appreciation is a testament to the nobility of the human spirit.” Balance must be achieved between an individual’s wishes and the growing concerns over a need to control healthcare costs.
Of course, once an advance directive is complete, work is still needed to see that these wishes are followed. Chances are improved through the completion of an official State Prehospital Do-Not-Resuscitate (DNR) form. Patients can wear a MedicAlert bracelet or neck medallion engraved with their DNR requirements.
There are programs available that are working to improve these end-of-life decisions. The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program (www.ohsu.edu/polst/) is designed to improve the quality of care that people receive at the end of life. This is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form, and a promise by healthcare professionals to honor these wishes.
These programs and legislative proposals are meant to address many of the barriers identified by physicians in the RAND Corporation for the U.S. Department of Health and Human Services Advance Directives and Advance Care Planning: Report to Congress August 2008.10 These barriers were noted to include lack of time, lack of formal training, lack of knowledge of palliative care measures, belief that patients and families do not want to engage in such discussions, association of palliative care with death, and lack of belief that such discussions are needed. As the RAND report concluded, advance care planning needs to be considered a process rather than a product. Through the legislative proposals and educational programs, improvements could be realized with end-of-life care.
In addition to advance directives and end-of-life planning, hospice benefits are yet another area where changes are occurring. The term hospice (from the same linguistic root as hospitality) can be traced back to medieval times, when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders, who founded the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London.
The Health Care Financing Administration (HCFA) in 1979 initiated demonstration programs at 26 hospices across the United States to assess the cost effectiveness of hospice care and to help determine what a hospice is and what it should provide. Then in 1982, Congress included a provision to create a Medicare hospice benefit in the Tax Equity and Fiscal Responsibility Act of 1982, with a 1986 sunset provision—which would have ended the program in 1986 automatically if legislation for an extension was not introduced. But rather than sunseting, the Medicare Hospice Benefit was passed that made the hospice benefit permanent by Congress, and hospices were given a 10% increase in reimbursement rates.
Most recently, the Medicare Payment Advisory Commission (MedPAC) proposed a set of recommendations that would revise the current Medicare payment system, which was implemented in 1983, for hospice care providers serving terminally ill patients. MedPAC has been concerned that for-profit businesses have been driving growth in Medicare spending by targeting hospice patients who need relatively long periods of care. The report also found that hospices with longer lengths of stay are more profitable; length of stay in a for-profit hospice is about 45% longer than the length of stay in a not-for-profit facility.11 The new payment system intends to remove incentives for long hospice stays. The official language of the recommendations states:
“The Congress should direct the Secretary to change the Medicare payment system for hospice to: have relatively higher payments per day at the beginning of the episode and relatively lower payments per day as the length of the episode increases, include a relatively higher payment for the costs associated with patient death at the end of the episode, and implement the payment system changes in 2013, with a brief transitional period.”11,12
The recommendation also states that “these payment system changes should be implemented in a budget-neutral manner in the first year.”
End-of-life care begins with physicians providing patients with an awareness of the realities of medical care and with information concerning the benefits and risks of end-of-life care. Based on this knowledge, patients can then make informed decisions. These decisions then need to be communicated to all caregivers so that the decisions can be honored.
There is concern that proposed changes in hospice reimbursements could somehow result in a decrease in access for patients in need of hospice. What is critical is that physicians continue to utilize hospice appropriately for patients who would benefit from these services, and do so at the appropriate time.
The starting point of all of these initiatives is access to and awareness of key information, so understanding the advance directive consultations provisions and hospice reimbursement changes is critical. Information is power, and end-of-life care is certainly in need of some powerful improvement.
The author reports that with regard to this work he has no conflicts of interest.
Dr. Stefanacci served as a CMS Health Policy Scholar for 2003-2004. He is Director of the Institute for Geriatric Studies at the Mayes College of Healthcare Business & Policy, University of the Sciences, Philadelphia, PA. Dr. Spivack is Associate Physician Editor of Clinical Geriatrics.