Many of us undoubtedly know someone who’s been in this situation, and one only needs to read the news to learn of case after case. Several famous cases of young women that had no advance directives regarding end of life decisions were Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. All of these situations resulted in lengthy and emotional legal battles.
In part, the Patient Self-Determination Act (PSDA) helps to address this issue. The law became effective on December 1, 1991, and requires health care facilities to give patients written notice upon their admission, of their decision making rights, and policies regarding advance health care directives. A patient’s rights include the right to make his or her own health care decisions, to accept or refuse treatment, and to make an advance health care directive, or a living will. Should a patient become incapacitated, the communication of the patient’s wishes is known.
However, according to Nathan Kottkamp, partner with McGuireWoods in the prnewswire.com press release: ''While all Medicare-participating health care facilities are required to inquire about and provide this information to patients under the Federal Patient Self-Determination Act, it is hard to imagine having a meaningful advance care planning conversation at the time of admission. And, this law doesn't help healthy young people who become incapacitated unexpectedly. Therefore, it is important for all people – young and old, healthy and sick – to discuss and document their end-of-life care with their loved ones and health care providers today.''
For these reasons, Kottkamp founded the National Healthcare Decisions Day (NHDD) Initiative, which is, according to information at nhdd.org, a collective effort of national, state and community organizations that work to ensure that all adults have the ability to make decisions in the United States and have the information and opportunity to communicate and document their healthcare decisions.
According to additional information at nhdd.org, Kottkamp explains in detail his reasons for launching the initiative:
''I serve on several hospital ethics committees as part of my health law practice, and I am repeatedly confronted with a very disturbing issue. Time and time again, families, providers, and hospital administrators struggle to interpret the wishes of patients who never made their healthcare wishes known (or failed to complete an advance directive to record their stated wishes). These families and professionals do their best to advocate for what they believe their loved ones or the patient would want or is in their best interests, but they are inherently doing so without any guidance, and it is agonizing. I founded National Healthcare Decisions Day (April 16) because I know that we-both potential patients and healthcare providers-can do a much better job of making our wishes known and then honoring those wishes to avoid these very sad situations.''
''Anyone who has been diagnosed with a serious illness and anyone with a large family (where there is an inherent possibility of disagreement) should complete an advance directive, particularly one that names a specific agent for healthcare decisions. It is also important for anyone in a long-term relationship, but who is not married, to appoint their loved one as their agent in writing because most states only recognized spouses and blood relatives as default decision-makers under the law.''
''I founded Virginia Advance Directives Day in 2006, which enjoyed participation by every single hospital in Virginia (along with a host of other providers and organizations). We repeated this feat in 2007, and I knew we had a great model to take nationwide, which we did in 2008. Since then, NHDD has resulted in over million healthcare providers receiving advance directives education, over half a million members of the general public receiving education, over 14,000 advance directives being completed, and it has helped raise awareness of the importance of advance care planning...''
''I hope that everyone will realize that advance care planning is a gift to loved ones. Studies suggest that most of us know that we should ''Have the Talk'' but only about a quarter of us have. I hope that people will mark their calendars for April 16, assemble their loved ones, and just do it. Sometimes we just need a catalyst. National Healthcare Decisions Day is it.''
The message is clear. Although legislation exists to offer guidance to people about end of life decisions, people must take the initiative, and the responsibility, to communicate their wishes regarding end of life decisions. Empowering themselves is the key.
