[Congressional Record (Bound Edition), Volume 159 (2013), Part 4]
[Senate]
[Pages 5309-5310]
[From the U.S. Government Publishing Office, www.gpo.gov]




                   NATIONAL HEALTHCARE DECISIONS DAY

  Mr. WARNER. Mr. President, I wish to recognize that today, April 16, 
2013, is National Healthcare Decisions Day.
  National Healthcare Decisions Day exists to inspire, educate and 
empower the public and providers about the importance of advance care 
planning. It began as a local, grassroots effort 7 years ago in the 
Commonwealth of Virginia, started by a Virginia attorney, and it became 
an annual event in 2008.

[[Page 5310]]

  It now is recognized across all 50 States as an annual imitative to 
provide clear, concise and consistent information on health care 
decision making to the public and providers. This year over 100 
national organizations, including groups like the AARP, Volunteers of 
America, government groups like the Veterans Health Administration, 
providers like the hospital company HCA, American College of Nursing, 
and American Academy of Nursing, along with faith-based groups like 
B'nai B'rith International have all pledged to participate today to 
spread the word on the value of conversations about our goals and 
values and preferences about medical treatment.
  I know how important this is, not just from my time serving both as a 
Governor and as a Senator, but also through the eyes of a loved one who 
struggled with these issues. My mother suffered from Alzheimer's 
disease for 10 years, and for 9 of those years, she could not speak. My 
father, sister and I found grappling with the challenges of caring for 
her difficult. The difficulty was greater because, when she was first 
diagnosed, my family did not take the opportunity to talk in a frank 
and fully informed way with her and her health care providers about the 
full array of health care options available or about what her 
priorities would be during the final years of her life.
  It is so frustrating that some have labeled advance care planning as 
efforts to take away choice from patients. This is ignorant and is 
disrespectful to those struggling will illness and caregiving. In fact, 
what we are trying to do is the opposite, give patients and their 
families the ability to make decisions when they can and provide enough 
support and information so that they can make informed choices based 
upon their own values and goals.
  It is not easy, this is a subject that most people do their best to 
avoid: who will decide how we will live when we are unable to make our 
own decisions. But it is critical.
  Most of us, more than 80 percent, will be unable to make decisions 
about what medical treatments we will receive for some period in our 
lives. The lucky will regain decision-making ability, but most of us 
will lose it for good.
  Family or friends are then asked to step in. Sometimes they are asked 
to make routine decisions, like using antibiotics to treat an 
infection. Sometimes it is more significant. Would a hip replacement 
improve quality of life when you are physically pretty healthy, but 
substantially impaired by Alzheimer's or another dementia? Or would it 
cause more harm than good?
  Often proxies are forced to choose between terrible options. Should 
they consent to an amputation of a gangrenous leg of a loved one who 
can no longer get out of bed, communicate, or recognize family for the 
remote chance that doing so will slow, but not cure, the progression of 
vascular disease?
  State laws and Supreme Court decisions direct proxies to make the 
decision that a now-incapacitated loved one would have made.
  But research says this often does not work. It might not work, for 
example, because a widow never told her adult children what she would 
want.
  Maybe she assumed that her children knew.
  Maybe she feared that they would disagree with her preferences.
  Whatever the reason, those who make decisions for her do so blind-
folded with their hands tied behind their backs.
  Too often, proxies are left with guilt, anxiety, and depression.
  But some are at peace because they know what the person wants. They 
know because they talk about how decisions should be made and who 
should make them. They talk about when a decision best honors the 
person by pulling back on treatments designed to treat the disease and 
instead forge ahead with aggressive symptom control. They talk about 
when a hospital bed at home is the right choice over tubes and needles 
and monitors in the ICU, or vice versa.
  After talking, they write it down in an advance directive.
  Each of us has an obligation to our families and friends to think 
about what we want, to talk to them about what we want, and to document 
our choices.
  In the last two sessions of Congress, I have introduced a bill to 
help patients, providers, and caregivers get the support and education 
they need. Among other things, it will make advance directives more 
accessible, and it will make it easier for providers to follow them. I 
am planning on introducing a bill, the Senior Navigation and Planning 
Act, in the coming weeks.
  However, today, I urge you all, on this National Decisions Day, to 
discuss your preferences and goals with your family and friends. Fill 
out an advance directive. Think of it as a gift.

                          ____________________