Introduction of the Personalize Your Care Actby Representative Earl Blumenauer
Posted on 2013-03-14
in the house of representatives
Thursday, March 14, 2013
Mr. BLUMENAUER. Mr. Speaker, advances in health care have led to
increasingly complex health care decisions and more treatment options
than we have ever before had the benefit--or the burden--of choosing
between. Both Democrats and Republicans agree that individuals should
be fully involved in decisions related to their own health care and
should be able to make informed decisions about that care reflecting
their values and their needs. We also agree that when people have
expressed their wishes, particularly in a formal and legally binding
manner, those wishes should be known and respected.
While there is widespread agreement regarding these principles, too often this is not the reality. Most adults have not completed an advance directive; if documents are completed, they are not regularly revisited and can be difficult to locate. Because these issues are difficult to discuss, surrogates often feel ill-prepared to interpret their loved ones' written wishes.
It is for these reasons that I am introducing the bipartisan Personalize Your Care Act, legislation that would support individuals and their doctors having voluntary conversations about patients' wishes and health care decisions.
Failing to have conversations about these decisions ahead of time can leave families and health care proxies faced with the burden of determining their loved ones' wishes in the midst of crisis, sometimes with little or no information about how best to direct care. This adds not only stress and anxiety to an already difficult situation, but studies show that lack of advance care planning actually prolongs the grieving process after losing a loved one.
One of the greatest misconceptions about advance care planning is that it is a one-time event. Attempting to plan for all possibilities in a single document or within a single conversation is overwhelming and, quite likely, impossible. Where possible, this should be an ongoing conversation. Careful, early advance care planning is important because a person's ability to make decisions may diminish over time and he or she may suddenly lose the capability to participate in his or her health care decisions.
Successful advance care planning is less about legal documentation and more about facilitating ongoing communication about future care wishes among individuals, their health care providers, and surrogates. The Personalize Your Care Act recognizes that documents like advance directives and physician orders for life-sustaining treatment are not ``ends'' but ``means''--the tools individuals can use to document their care preferences based on informed decisions incorporating their own values and current circumstances. It is important that individuals work with their care providers to update these documents as treatment options and personal preferences change.
This process not only provides higher quality care, but personalized care.
The Personalize Your Care Act aims to support advance care planning by providing Medicare and Medicaid coverage for voluntary consultations about advance care planning every 5 years or in the event of a change in health status. This periodic revisiting of advance care documents and goals of care recognizes that an individual's preferences can change over time. It also recognizes that the advance care plan should be updated if an individual develops a serious or chronic illness, if additional curative and palliative treatment options become available, and to consistently reflect the individual's current circumstances and preferences.
Honoring the expressed wishes of individuals must also be a priority. For this to occur, advance care planning documents must be accessible wherever care is provided. The legislation ensures that an individual's electronic health record is able to display his or her current advance directive and/or physician orders for life sustaining treatment (POLST), so that his or her wishes are easily accessible and respected. Furthermore, under the legislation, advance directives would be portable, ensuring that advance directives completed in one state are honored in another state, in the event care is needed to be provided there.
The legislation also provides grants to states to establish or expand physician orders for life sustaining treatment programs. For instance, the National POLST Paradigm Program Task Force provides consultation, guidance and mentorship to developing states for program and form development, recognizing the uniqueness of each state. These programs have a track record of promoting patient autonomy through documenting and coordinating a person's treatment preferences, clarifying treatment intentions and minimizing confusion, reducing repetitive activities in complying with the Patient Self Determination Act, and facilitating appropriate treatment by emergency personnel.
These investments in advance care planning will reinforce patient- centered care--engaging individuals in planning and decision-making about their future care and ensuring that those preferences are documented, accessible, and can be honored in any state and in any care setting. The Personalize Your Care Act is supported by members of Congress on both sides of the political aisle and by patient advocates, physicians, nurses, and the faith community who see every day how advance care planning improves individuals' and families' peace of mind and the quality of their care.