The Patient Self Determination Act, which took effect in 1991, requires that all patients receive information on advance directives upon admission into hospitals or long-term care facilities that receive Medicare or Medicaid funding. Past research has shown that there is still a need for improvement, particularly in the advance care planning discussion that takes place between health care providers and patients and their families. To do this requires educating the public and health care providers on the importance of advance care planning.
As a doctor of nursing practice student in the Public Health Nursing Leadership program at the University of Massachusetts, I feel it is imperative that we improve educational initiatives and health care policy to institute such changes and promote understanding and use of advance care planning.
It is essential that conversations continue, which is not only the role of the physician, but of advance practice nurses as well. As an oncology nurse, I understand the importance of patients' personal, cultural and spiritual preferences, as well as their goals of care. I've also seen many instances where no advance directives were in place during a critical point in care.
Health care reform initially attempted to address advance care planning discussions between physicians and patients by allowing physician reimbursement under Medicare coverage. However, this provision was removed from the early version of the Patient Protection and Affordable Care Act in 2009, when Sarah Palin grouped this provision into her "death panel" arguments that any such discussion would allow physicians to have judgment on who was worthy of care.
Unfortunately, it appears this mindset has stuck for many because revisions were again excluded from legislation. It is important to understand that advance care planning discussions do not only have to take place with ill individuals. While these provisions would have allowed for reimbursement of the time spent on discussion, they do not prohibit health care providers from having these discussions with patients and their families.
While advance directives are given upon admission into a health care facility, the topic is usually put aside until an emergency arises, such as a change in health and/or mental status. The Agency for Healthcare Research and Quality states that less than 50 percent of severely or terminally ill patients have an advance directive in their medical record, and that only 12 percent of patients who have a directive received any input from their physician. Also, 65 percent to 76 percent of physicians were not aware of patients who had advance directives.
Having a directive in place prior to needing end-of-life care gives patients more control over their care and final wishes, and research shows a subjective benefit for patients who were able to have such discussions. Having advance care planning discussions prior to emergent situations can help reduce conflict and ease the burden on family members, as well as over- and under-treatment in end-of-life scenarios. It also reduces overall health care expenditures, especially within the last year of life.
The American Academy of Nursing policy brief discusses a need for advance care planning reform. It is a discussion that should take place early and should be revisited often as the patient's physical and spiritual needs change. Nurses have the opportunity to educate patients on advance directives, initiation of advance care planning and planning of patient health care.
Initiatives such as National Health Care Decisions Day (April 16) help educate patients on how to express their wishes (www.nhdd.org). From its inception in 2008 through 2011, facility/member participants have grown from 200,000 to 2.2 million; public participation has grown from 30,000 to 1 million; and the number of participants' advance directives improved from 5,300 to 17,500. However, there are still many opportunities to grow this initiative.
Although science has done a great deal to extend life expectancy, the truth is that death is still inevitable. Initiating a discussion on advance care planning with patients may relieve family members of very difficult decision making when an advance directive does not exist.
We should always continue to incorporate the person as a whole, understanding the importance of patient preference and personal, cultural and spiritual values. By professionally supporting educational and planning initiatives, we can ultimately change health policy and patient outcomes.