Let me first thank the Texas Hospital Association. I am honored to be on the dais today.


Let's start with a question: How many of you in this room know someone alive today due to the miracle of modern medicine?


There are a lot of hands up. As health care professionals, you positively embrace the success of modern medicine in extending life.  Who wouldn't?


We have modern technologies for prolonging human life that many would have regarded as science fiction just a generation ago.


We can replace failed organs, including the heart. But, that's old news. What's new and promising are the clinical trials testing the use of the patient's own adult stem cells to treat heart disease.


Yet, along with these advances sometimes comes an unachievable expectation.  Despite all the advances – in the end – we are not immortal.


Scientists have not yet come up with a "cure" for old age.


There is a gap between the limitations of the medical arts and the public's perception. While doctors and hospitals can do more than they ever could before, God alone performs miracles.


But, diseases, injuries, and medical conditions that used to be fatal can be treated. Look at childhood leukemia survival rates.  In the 1960's the five-year survival rate for Acute Lymphoblastic Leukemia was less than five percent. Today it is 85 percent.


As science advances, as new treatments are implemented, we need to continually examine medical ethics questions,  but we need to do so prayerfully, thoughtfully, scientifically, with all involved – patients, family members, nurses, physicians, counselors, ethicists, clergy, and many other health care providers.


Every improvement in medicine creates a need to consider its ethical implications. Medical science won't stop and neither will the medical ethics debates associated with each new advancement.



So, what is to be done?


I went back to the original committee layout for my House version of the Advanced Directives Act, HB 3474. It offers my goals for the bill and serves as my foundational tenets: compassion, communication & capacity. This language was my first attempt to draw the legislature out to begin to ponder this issue.



Above all else, my first concern: I want my legislation to be rooted in compassionate care for the patient and his or her family. This tenet of compassion has to be the focus of our efforts as we contemplate a fragile human facing the end of life with those who love them.


And, dear fellow members of the human family – we will find ourselves in doing so contemplating our own mortality.


While we have focused our efforts on patient care, we must also remember those who are grieving. I also want end of life care to be compassionate to the families. Nothing is more painful to endure and we must keep grieving families in mind as we work on the issue of advanced directives.


And finally, our efforts must be compassionate for the medical professionals faced with these agonizingly difficult cases. They should not be placed in circumstances where they honestly believe they can no longer heal, but may only harm. Their professional conscience and professional integrity must be respected.


The challenge faced by the Texas Legislature is how to reconcile the modern miracles of medical technology with the finite limits of human mortality.


There are cases, fortunately rare, where the family and the medical profession reach differing conclusions on whether the limits of the healing arts have been reached.  How do we recognize the proper time to take our hands off as God places his loving hands on?


And so, we proceeded and learned that a heart that stops can be kept beating artificially. Lungs that fail can be made to fill with air. The work of the kidneys can be performed with dialysis. Machines can take over the functions of multiple major organ systems and the science of life support shows no signs of slowing.


Here are the ethical issues in a nutshell: where is the dividing line between medically and ethically appropriate treatments that sustain life and medically and ethically inappropriate treatments that prolong dying – and who, if anyone, should decide when this line is crossed.



I am walking you through the recent history to set the stage for how complicated this debate is for hospitals, physicians, and the Texas Legislature.


Texas has a citizen legislature and our backgrounds run the gamut from lawyers, engineers, bankers, lawyers, teachers, restaurant owners,  lawyers, retirees, and many other professions. Only a handful of legislators are doctors and nurses.


Legislators bring their life-experiences, backgrounds in differing professions, and varied personal philosophies and values to Austin for 140 days every other year. 


Once assembled, we wade through proposed legislation covering topics ranging from taxes and toll roads in the morning, annexation and anatomical gifts after lunch, and Medicaid asset tests and the TAKS test before supper.  We could be debating dangerous dogs at midnight.



So, is the Texas Legislature the best place for end-of-life to be debated. Ideally, no.


In 1999, the current Texas Advanced Directives Act, by Moncrief/ Coleman, was an "agreed-to" bill that passed into law as a "Local and Consent Item".


The Advanced Directives Act revisions I sponsored in the last session, SB 439, was legislation where I strove to try to find agreement on growing concerns that have come up since the 1999 act.


The Texas Advanced Directives Act Coalition, led by Chairman Greg Hooser, sought reform. This was a large group of stakeholders who had worked on the original advanced directives act. The group met for a year prior to the session to try to reach agreement. The group had been expanded in size as new stakeholders joined. Some the new members were disability activists who didn't support the original legislation. There were also existing members who supported the original bill, but decided later it needed rework ranging from minor tweaks to major revisions.


At the Speaker Craddick's direction, my committee was given the charge to study the issue over the interim prior to the session.


When the session rolled around, multiple advanced directives bills with fundamental policy differences were filed in both chambers.


he bill I filed on the topic, HB 3474, was rewritten extensively in my committee, but not actually voted out. Instead, my language was substituted into SB 439 by Sen. Deuell.


Each of SB 439’s elements was the result of lengthy negotiations to reach acceptable compromise. It didn't have unanimous consent, but it was a consensus document with the majority of stakeholders.


Briefly, here were some of the major elements of SB 439:

• Increased the minimum time that a family must be notified.
• Added a new judicial process of at least 20 days.
• Included, for the first time, nutrition and hydration as ordinary care. SB 439 proposed that if nutrition and hydration are the only care being provided, Chapter 166.046 would not be invoked unless the continued provision of nutrition and hydration would hasten death.
• Provides the family the opportunity to receive a free copy of their loved ones' relevant medical records.
• Required a liaison be appointed by the hospital to assist the family.

The clock ran out on SB 439 on midnight of the final day it could have been considered. So, we are still under current law and the question is what should –or should not – happen next?


The bottom line: whatever we do, let us be sure to also look at this process from the standpoint of a family faced with a tragic circumstance – and that compassion flows logically to better communication.

• Appoint a liaison to the family with training in end-of-life issues and hospice care.
• Have the formal liaison supply a steady, continuous point of contact to prevent confusion and better coordinates efforts to locate an alternate willing provider.

This is an important step in moving away from what is becoming an adversarial process and back to the law's original intent of dispute resolution.



Surrogate decision-makers should be included at every step.


So, I do not envy any of you the task of trying to resolve medically inappropriate treatment disputes. Doctors, nurses, and hospital professionals live to heal. If anyone would like to see a miracle, it is you.


Tomorrow’s health care providers may face even more of these vexing end-of-life issues as the population ages and technology improves. How may we better prepare them for it?


How about coursework in medical ethics and humanities is a part of their standard curriculum in medical school.


The Texas Medical Board requires physicians to obtain just one hour of continuing education each year in the area of ethics and/or professional responsibility.  I favor the development of an ethics continuing education module for physicians on the topic of communication with family members on end-of-life issues.


Both the TMA and THA have an essential role in the development of communication best-practices regarding advanced directives. The legislature is looking to you for leadership and wise counsel.


My third foundational tenet is capacity. I bring this one up because I believe it ties into one of the core ethics debates on end-of-life: treatment pending transfer.  


As you know, my bill did not contain a "treatment pending transfer" provision. While this highly charged and sought after option may appear to always be in the patient's best interests, I concluded that a blanket treatment pending transfer law could be the worst of all options in certain cases.


The reason is this: these patients are typically unlikely to be transferred at all. Their fragile condition, often involving multi-system organ failure, is so complex that few facilities can realistically provide comparable care.


Yet, there will always be some cases where a transfer might have be possible – if there was someplace for the patient to go.


There is no ethical conflict if another facility and physician is willing and able to accept this fragile patient. What became clear working on end-of-life issues is that Texas has a shortage of facilities able to provide for certain complex cases requiring advanced life support.


During the session, the Texas Hospital Association gave me a list of the eight skilled nursing facilities in Texas that accepted ventilator patients. Only one facility in the entire state accepted both ventilators and dialysis – but this facility didn't accept either Medicaid or Medicare for dialysis cases.



The reason: the reimbursement rate for providing 24/7 continuous ventilation was $88.77 a day.

• This was added on top of the maximum base rate for this class of patients of $170.62 a day, which includes a liability insurance add-on.
• This gives a top end of $259.39 a day for a 24/7 ventilator patient.

By comparison, I was informed by the Texas Health Care Association that the Veterans Administration and private insurance run closer to $375-$500 a day for this level of service.


I applaud Commissioner Hawkins' willingness to address these capacity issues.



Finally, I have a question for you:


How many of you have executed an advanced directive, a living will, and a medical power of attorney?


Next, how many of you have ready access these documents? Do you and your loved ones know where these documents are – right now – if you needed them?


This is a room full of people involved in health care and we should be ahead of the pack when it comes to being prepared.


The goal has to be to have these documents executed well before they are needed.


If end-of-life documents become as common as drivers licenses, the life of everyone in this room will be easier. 


Whatever tests all of us may face in resolving today’s end-of-life issues, we must remember that ever-improving access to extraordinarily advanced medical care is a blessing.


Remember again that person who is alive today because of advancements in modern medicine.


I am remembering your mission: each hospital, doctor, and nurse. It represents the culmination of all your training, hopes, and aspirations. It is what you try your best to do with every patient. It is the "why" behind your chosen professions.


The final C: Caring.


You know you hold positions of public trust. Thank-you, Texas Hospital Association, for your long tradition of caring.



Texas thanks you.

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