[Congressional Record (Bound Edition), Volume 159 (2013), Part 3]
[Extensions of Remarks]
[Page 3663]
[From the U.S. Government Publishing Office, www.gpo.gov]




             INTRODUCTION OF THE PERSONALIZE YOUR CARE ACT

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                          HON. EARL BLUMENAUER

                               of oregon

                    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.

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