Testimony by:
Lanore Dixon
(sister and guardian of Andrea Clark who was a victim of the Texas Advance Directives Act of 1999, at a Houston facility)
August 9, 2006
Testimony before Texas House Public Health Committee
Interim Charge Hearing on the 10 day provision of the Texas Futile Care
Law
To understand how badly the Texas Futile Care Statute failed my sister Andrea Clark and our family, allow me to share a little about Andrea:
Andrea was born fighting for her life. Somehow she always beat the odds, and took great pride in proving doctors wrong. A "blue baby," born with a hole in her heart, there was very little hope for Andrea's survival. At the time of her birth in 1952, the heart lung- machine was still years away from any practical use for surgery. Blue babies always died young and Andrea would too, so the doctors told my parents. The only slim hope the doctors held out for Andrea's survival was if she could be kept alive until the heart-lung machine became available, and then undergo surgery to repair her heart. To keep her alive, my parents and the doctors relied on the the drug Digitalis, prayer, and Andrea's iron will to live.
Despite dozens of trips to the emergency room for congestive heart failure, Andrea continued her fight for life until the heart-lung machine became available for use in open-heart surgery. In 1957, when Andrea was five years old, she underwent the pioneering surgery, performed by Drs. Denton Cooley and Michael DeBakey, to repair the hole between the chambers of her heart. That day three children, including Andrea were operated on. Of those three, only Andrea survived.
After her surgery when she was five, Andrea enjoyed relatively good health until 1981 when she suffered a cardiac arrest. Again, her prognosis looked dismal. But once again, to the surprise of the medical staff and the relief of all her friends and family, Andrea pulled through. Although she was more frail than before, and her physical abilities more limited, her spirit and iron will remained intact.
Less than a year after the heart attack, Andrea became pregnant. Though her doctors warned her of the great risk in carrying the pregnancy to term, with that same rare courage that marked all the days of her life, in September of 1982, Andrea gave birth to a healthy baby boy.
With complications from the birth, once again, Andrea came very close to death. But again, she triumphed and lived to raise her little boy, Charlie.
Then in the summer of 2001, while Andrea was hospitalized for the same respiratory problems for which she was most recently hospitalized, her doctor at that time, a doctor at the very hospital who initiated the Futile Care process on her this year, told me that Andrea was terminal, that there was no hope of recovery for her.
I don't know if that doctor is still alive, but I know until May 7 of this year, Andrea continued to live.
All her life, Andrea knew her health was fragile and prepared for the eventuality of long hospital stays. For one thing, she made certain she had adequate health insurance coverage. Although she was on a fixed income, each month she had a large chunk of money automatically deducted from her pension check to pay her health insurance premiums. The insurance she carried was excellent, covering 90% of all medical expenses. So excellent was her insurance, in fact, that at the time of her death, despite having spent the prior 8 months in ICU and undergoing major surgery, Andrea still had not used any of her Medicare benefits.
For another thing, Andrea also thought about and discussed with her family her instructions should she ever be unable to communicate or to personally make medical decisions for herself. When Andrea went into the hospital in November 20, 2005, the Terri Schiavo case was barely off the headlines. Andrea and everyone else in the family wanted to make certain we were clear on her instructions, and on at least three different occasions, Andrea discussed her instructions with family members.
In the event she ever became unable to communicate or to make medical decisions for herself, Andrea's instructions were for her doctors to take any and all measures necessary to save her life, unless she was flat-line brain dead.
Andrea did not have a document drawn up to specifically state her instructions because the hospital staff told her she did not need such a document. Furthermore, she trusted me and her son and the rest of the family to carry out her instructions if she could not communicate her wishes.
Our entire family, including Andrea's son, Charlie, were in unanimous agreement that her values be honored--whether we agreed with them personally or not--and that her instructions be carried out exactly as she told us.
Andrea had an iron will and a profound respect for the gift of life—she simply didn't believe in giving up. Given her experience with proving doctors wrong, with doctors giving up on her and pronouncing her terminal when she still had so much life left in her, given the number of times she beat the odds, Andrea's decision to continue life saving measures, regardless of medical opinions, was absolutely logical, and completely rational.
The Texas Futile Care Statute allowed the hospital to completely ignore
Andrea's values
and undermine her logical, determined, and very carefully considered
decisions about her medical treatment.
But the law not only failed Andrea, it failed our entire family.
Andrea was admitted into the hospital on Nov 20, 2005, in congestive heart failure. In December of 2005 she was put on a ventilator to help her oxygen intake. In late January, her doctor decided he could do nothing more for her. He said he'd either release her to hospice to die, or she'd have to undergo open-heart surgery. He gave terrible odds for Andrea's survival, but they were better than her odds without it.
No quitter, Andrea opted to undergo heart surgery, knowing the intense pain that comes with such surgery. She'd been through this before and still remembered the pain and incredible thirst from when she was five, but she made the decision to go through with the surgery.
The January 23 surgery went very well. Her chest cavity was left open for a few days in case doctors had to go back in quickly. No such problems occurred and in the weeks following surgery, Andrea seemed to be recovering nicely. She still required the ventilator, however.
On Thursday, February 16, Andrea's doctor called me. He said he and Andrea had a long talk and she decided she no longer wanted to be on life support, but she wanted her family to be with her when they removed life support.
I was bewildered as this was contrary to everything Andrea had ever said to us.
Everything moved very fast and there was very little time to round up all the family because they planned on pulling her life support on Saturday, February 18th, just two days away.
When I arrived around 6pm on Saturday the 18th, most of the family and friends were already gathered at Andrea's bedside. Before I allowed things to move forward, I wanted to make certain Andrea had changed her mind and really wanted to end life support. This change of "heart" didn't sound like Andrea, but I and the rest of the family were determined to honor her wishes, whatever they might be.
I asked her, "Andrea do you want them to take you off the ventilator, even though you'll die without it?"
Her mouth started running too fast for me to read her lips. (With the ventilator, she didn't have a voice—but that didn't slow down her mouth!) After much intense lip reading, I was able to discern that she wanted strawberries, root beer, and watermelon—these were the same life-sustaining substances she was requesting before the surgery.
In the hallway, the family had gathered around the nurse. I overheard the nurse say, "Well, I guess we can get things started." She explained that she would administer morphine before she removed Andrea from the ventilator.
This process seemed to be moving much faster than was necessary—I'd only been there a few minutes. I didn't understand the rush, or why we couldn't even have a few minutes to discuss practical things like Andrea's wishes for funeral music, for example.
Furthermore, I was still not convinced of Andrea's desire to remove her from life support. I explained to the nurse that Andrea was still asking for food and that didn't seem consistent with someone ready to die. A friend of Charlie's also voiced concern that it didn't match what Andrea had told him the previous day.
The nurse told us the doctor had explained carefully to Andrea that she would die if life support was removed, and Andrea agreed to have it removed.
We were still not convinced and the nurse called the doctor on the phone so he could talk to each of us.
While the other family members spoke to the doctor on the phone, the nurse and I returned to Andrea's bedside. I tried to get her to focus on what I was saying instead of just running her mouth about food. I told her rather sternly, "Andrea, I need you to focus on what I'm saying and stop talking about food for a minute because this is a matter of life and death."
I asked her, "Do you want them to take you off the ventilator even though it will cause you to die?"
Her mouth started running faster than ever then, and I couldn't catch a word of what she said. The nurse gave her a yellow legal pad and pen so she could write.
Andrea wrote, "I do not want to die; I want to live."
The nurse spoke to the doctor on the phone again and told him what happened. He then asked to speak to me.
Andrea's doctor told me he'd change Andrea's code back to its previous status. He accused Andrea of manipulating him and said in the next few weeks he would probably call an ethics committee meeting.
This event took place less than a month after the January 23 heart surgery.
On March 7, 2006, I received a call from Andrea's doctor informing me she'd suffered a serious bleed in her brain. He told me surgery was not an option because of her fragile state.
The next day I asked the nurse about Andrea's Cumidin levels prior to the bleed. She told me they removed Andrea from Cumidin the day before the bleed due to elevated levels. She also told me that despite removing her from Cumidin the day before, Andrea's Cumidin level was even higher the day after they removed the drug. As I understand it, this was the day the bleed occurred.
When I visited Andrea on March 8, she seemed unable to respond to me, staring off at the ceiling most of the time. But she didn't seem to be in any pain. Every now and then she'd refocus on another spot on the ceiling.
That same afternoon, I saw Andrea's doctor in the hallway. He told me he'd spoken to a neurologist, and the bleed was so devastating that it was unlikely that Andrea would recover from it. I didn't know if that was true or not, but I knew it would be just like Andrea to prove him wrong.
A couple of weeks after the bleed, Andrea's doctor called a family meeting to discuss changing Andrea's treatment to just keep her comfortable. The meeting took place on March 23, 2006, and was attended by the following: me and my siblings Melanie and Bobby, as well as her son Charlie; Andrea's doctor, the social worker, the palliative care nurse, a chaplain, and an ethicist. They all worked for or had privileges at the hospital, but the only medical people were the palliative care nurse and the doctor.
As I understood it, Andrea's doctor wasn't advocating that we take Andrea off the ventilator, but that no other life saving measures would be taken, including dialysis. In other words, he wanted us to go against Andrea's clear instructions that all measures be taken to save her life unless she was flat-line brain dead.
We told the doctor we did not agree to the change in the level of her care.
Andrea's doctor insisted, "Andrea's miserable, she's just miserable!" He also said she had no quality of life left. The chaplain agreed. This chaplain was also on the Ethics Committee.
As I understand it, Andrea's main source of pain was a bedsore she developed while at this hospital.
During the meeting, the social worker told us that Andrea had told her she wanted to die. All of us had a hard time believing this, since we all knew Andrea couldn't stand this person and would never have told her the time of day, much less something so important. Furthermore, only a few weeks earlier, Andrea had written that she wanted to live.
During the meeting, I specifically asked the doctor, if Andrea was so miserable, why couldn't he treat both her pain and her medical needs. He specifically answered that you can't do both at the same time and that the two approaches have completely different goals.
The doctor also told us if we didn't agree to change Andrea's code, he'd call a full Ethics Committee meeting. The social worker told us if the Ethics Committee agreed with the doctor, we'd have ten days to move our sister to another facility or she'd be removed from life support.
We told them we intended to fight any such Ethics Committee ruling to take our sister off life support. We told them we'd get a lawyer, we'd picket, we'd alert the press, we'd call legislators, we'd use the blogosphere and any other means available to fight such a ruling.
After the meeting, the social worker asked if we'd like her to start looking for another facility to accept Andrea. We were very alarmed by the threats we'd received in the meeting about the future of Andrea's care, so we gave the social worker permission to start looking for another facility for Andrea.
On April 10, 2006, at 4:30 pm, I received notice of an Ethics Committee meeting scheduled for 7am the next morning, April 11, to discuss Andrea's pain management.
Because I live five hours from Houston, the timing of this meeting was very difficult for me. To make it to the meeting on time, I had to leave immediately and spend the night in the hospital parking garage in my car.
I arrived at the hospital very late in the evening, the night before the meeting. The nurse was about to give Andrea medication for pain so she could give her a bath, but she held off so I could visit my sister.
Andrea showed great improvement since the bleed. She interacted with me in various ways, like nodding and smiling. And she carefully formed the words of a sentence for me: "I miss you," she mouthed.
I was ecstatic! She had come so far! She had proven them wrong again and she was on her way back! I cried and thanked her for giving me that gift, and I told her how much I loved her.
Andrea didn't seem to be in much pain during the visit, nothing that didn't seem perfectly consistent with the discomfort one would experience from sitting or lying in the same position for too long. By the time I ended my visit with Andrea, it had been five and a half hours since her last pain medication and she seemed relatively comfortable when I left.
Despite spending the night in the parking garage, I slept amazingly well.
Before the meeting the next morning, I visited Andrea again. During this visit she seemed to be in considerably more pain than the previous night, although she'd had pain medication 1.5 hours earlier. I don't know why her pain seemed significantly higher than the night before, when she hadn't had pain medication in several hours.
She was also far less responsive to me than the night before—she seemed to be drawn inward, focusing on her pain.
Charlie and I went to the meeting by ourselves with no representation. We were met by the full Ethics Committee.
I was going into this meeting with the understanding I'd been given by Andrea's doctor in the previous family meeting that palliative care and medical treatment are mutually exclusive courses of treatment—so naturally when the committee told me they wanted to put Andrea on a pain management program, my understanding was that they wanted to treat her pain at the expense of her medical treatment and neither I nor the rest of the family would agree to that, based on Andrea's instructions to us.
The chairman of the committee badgered me, insisting I tell him when Andrea said she wanted to be in pain and suffering. I corrected him on the premise of his statement several times, telling him that what Andrea said was that all measures be taken to save her life and since she was very familiar with the pain and suffering involved with illness and hospital procedures (her recent heart surgery provided ample evidence of such familiarity), her instructions also implied her acceptance of pain involved in medical treatment.
At some point in this arguing, the head of the Ethics Department. interrupted and said I seemed confused about the goals of treating Andrea's pain, as though I was worried they would overdose her on pain medication and allow her to die. I told him based on what we were told in the previous meeting, that was exactly my fear. I repeated to him what we were told in the previous meeting, that adequate pain treatment could only be done at the expense of adequate medical treatment, and that you couldn't do palliative care and medical treatment simultaneously.
The committee did a complete 180 from the information we'd been given at the previous meeting. They assured me they could absolutely take care of Andrea's medical needs while treating her for pain.
Andrea's doctor and the palliative care nurse behaved as though they were clueless about where I'd got the notion that Andrea's medical needs couldn't be met if her pain was adequately treated, although all members of my family had the same understanding as I from the previous meeting. This about-face and the doctor's behavior confused me, and I felt frantic to get back home and resume searching for another facility for Andrea.
During this meeting, I also told the committee that Andrea's ability to communicate had improved dramatically since she'd suffered the bleed. I told them she'd made a sentence for me the night before. Although this was wonderful news that I would have thought the medical team would be delighted to hear (perhaps they already knew she could talk, though), no one offered any comment on this whatsoever.
After Charlie and I left the meeting, the committee voted unanimously to allow Andrea's doctor and nurses to use any pain medication necessary to treat Andrea's pain and to exempt them from any violation of medical ethics if pain treatment resulted in her death.
Andrea's medication was increased immediately after the meeting. Later that afternoon when I visited her, I noticed she was waking up every couple of minutes with a terrible look on face, as though she had a rotten taste in her mouth. When I asked the nurse what was wrong with her, the nurse said she needed more medication.
The next morning, April 12, when I visited, Andrea had dried vomit all
over her mouth.
I asked the nurse to come to the room several times. I would have cleaned
her mouth myself, but I wanted the nurse to see Andrea had vomited contents
of her feeding tube.
Communication was harder with increased medication. Andrea didn't try to speak any more words. Her responses were limited to nods, shakes of her head, and hand and eye squeezes.
At times, Andrea behaved in ways that convinced us she didn't want to be sedated. Once she grabbed my sister Melanie violently and shook her head when the nurse said the family needed to leave so she could do evaluations. Melanie said she was surprised Andrea was so strong. Later when Melanie returned, Andrea was drugged and unresponsive.
One day Andrea's nurse was at lunch, and I wanted to know how much medication she was receiving. I tried to look at Andrea's chart where they logged pain medications. One of the nurses at the desk told me not to look at it. I stopped going through the pages, but I was still looking at it.
Then the nurse manager came out of his office, slammed the chart shut and took it into his office and shut the door. I wasn't trying to break rules, but I thought it was my right and responsibility to look at it to see what they were giving my sister.
Later, the nurse manager came back out of his office, and his attitude was much nicer. He brought Andrea's nurse with him to explain why her pain medication was so high that day.
It might sound paranoid, but I'll always wonder what Andrea might have told us if she hadn't been so heavily sedated from that point on.
Weeks later, Dr. Lenz cut the dosage of one of Andrea's pain medications by half and the other by 75%. The reduction seemed to make Andrea more comfortable, not less.
At 4:30 pm, April 14, 2006 (Good Friday), Charlie and I received notice of an Ethics Committee meeting scheduled for 7am the following Tuesday to discuss Andrea's medical care. This was the meeting we'd all been dreading would come.
Because it was 4:30 pm, Good Friday, on a holiday weekend, we had no time to find legal help, to get Andrea's medical records, to get other medical opinions, to arrange for travel to Houston, or prepare a defense for Andrea's life.
And again, the meeting was scheduled for 7 am so we'd likely sleep in the hospital parking garage again. We asked hospital to change the time of the meeting to a later day in the week or a later time same day, but they refused.
We were certain the Ethics Committee would render another unanimous decision by virtue of the fact that all of its members were either employees of the hospital or doctors with privileges there.
As predicted, the committee voted unanimously to withdraw Andrea's life support in ten days if we didn't move her to another facility.
In other words, if we couldn't find a place to take Andrea, something we'd already been trying to do for almost a month, the hospital would remove life support, and allow Andrea to suffocate to death.
According to the law, it didn't matter that Andrea was conscious and still able to feel and communicate her feelings. It didn't matter that she was loved by many, or even that she was fully insured, or that she and her family were in unanimous agreement that medical treatment should be continued.
It didn't matter that our sister and Charlie's mom was a living, breathing human being who absolutely deserved care, even if her doctor was tired of caring for her.
According to the law that's supposed to protect patients and their families, none of that mattered. According to the law, if only ONE person, ONE doctor decided it was time for Andrea to die and could get an Ethics Committee to agree, a committee virtually assured to agree with him, then our sister, Charlie's mother, was going to die, regardless of how many times she'd proven doctors wrong, regardless of how many times she beat the odds, regardless of any measures she took to make certain she was well-taken care of should she suffer such a life-threatening illness, and regardless of her personal values and her own reverence for life.
According to the law, one single doctor is anointed with this kind of God-like power.
As promised, we called every media resource we could: television, radio, newspapers, streaming media on the internet, and the blogosphere.
We held protests outside the hospital and were joined by family members of other patients killed at same hospital by the same policies we protested. These were families whose stories didn't make the headlines, whose family members died quietly without the public knowing about it.
Though heavily sedated, when we told Andrea we were fighting for her, she communicated her approval by squeezing our hands, or squeezing her eyes in affirmation. At times when her sedation was lower, she would show her anger by trying to raise her head off the pillow when we told her we told her what the hospital was doing.
On April 27, 2006, the 7th day of the ten day deadline, under intense pressure from negative media attention, the hospital found a facility in Illinois that would accept Andrea.
The hospital bribed us to accept the out-of-state transfer immediately, offering to pay the full amount of the $15,000 transport cost if we took the deal that very day. If we waited until the next day, they'd only pay half the cost. Of course, if we waited longer, until the third day, they'd kill Andrea.
This situation, to me, was the most painful of the entire battle to save Andrea: We were terrified of the effect such a trip would have on Andrea. We were also terrified to refuse the hospital's offer because they could legally kill Andrea in a couple of days.
We had no family or friends in Illinois or neighboring states who could attend to Andrea, and we couldn't do it ourselves. We're working class people, with jobs we need to survive. We couldn't simply leave our jobs. Most of us can't afford to visit Illinois, much less set up camp in an out-of-state hospital for an undetermined amount of time to be with our seriously ill sister. It was hard enough to take off our jobs to be with her in Houston.
We were left with two heartbreaking choices: To transfer Andrea a distance so great she very well might not survive the trip—and if she did survive, she'd be in a foreign place without the comfort of family or friends—and if she didn't survive the trip, she'd die alone without any loved ones by her side; or we could keep her in Houston and hope to find a still-undiscovered facility here that would accept her, although we'd been searching more than a month by this time and there were only two days remaining on the clock. This risked that her instructions for the way she wanted her care to be handled would be ignored and the hospital would kill her in two short days.
But after a month of searching for another facility and little hope in finding one, and no other alternative that would allow us to honor Andrea's instructions, we agreed to transfer her to Illinois.
I spent that night at the hospital and tried to prepare Andrea and the rest of the family for what was ahead. We were all terribly upset, grieving over having to send our helpless, tiny sister away.
The next afternoon I tried to prepare Andrea for the trip. I talked to her and told her what was going to happen and why. She was very heavily sedated, and I got little response from her. I couldn't tell if she understood anything, but I didn't want her to feel abandoned or that we were throwing her away. I packed her clothes and waited for the ambulance.
Twenty minutes before the ambulance was to arrive to pick her up, Andrea's doctor came in the room and told me the transfer had been canceled. He said the facility in Illinois was inadequate to take care of Andrea's needs, and that it turned out to be nothing but a nursing home with a dialysis machine in the basement. I was completely stunned.
Moments later, a friend of Andrea's came to visit. She also told me the facility in Illinois wasn't fit to take care of Andrea because it was nothing more than a nursing home (Nursing homes can't administer the vasopressers that Andrea often took).
I asked Andrea's friend how she knew this when I had only found out about it five minutes earlier. She told me she read it on the internet.
The family was filled with relief and despair: Relief that we would avoid the risk of sending Andrea to some distant place where she could die, or we couldn't be certain of her care and couldn't be there for her; and despair that we had wasted two more precious days of Andrea's life on this failed transfer when we could have continued searching for a facility to take her. It was Friday afternoon and the one day remaining before the deadline was a Saturday.
If the Texas Right to Life had not found Dr. Lenz to take over her care, Andrea would have died upon removal of her life support on the tenth day. To our family, it was a miracle that Dr. Lenz had privileges at that hospital so he was able to treat Andrea and continue to be her doctor until she died naturally the way she wished.
It was Dr. Lenz's taking over Andrea's case that allowed our family to keep its promise to Andrea and carry out her instructions for medical care.
The law did not do one thing to bring this about, not one thing to protect our sister or our family!
The pitiful ten days to find another facility is a cruel joke on patients and their families. You can't get anything done in ten days, especially when you've got doctors and hospital personnel who think their values trump your loved ones' values. It's hard enough to find a doctor for a healthy person in ten days, much less for someone as sick as Andrea was. And when a family has to drag the patient's business through the press, doctors don't want to get involved. But taking their case to the people is the only hope families have of fighting such an unfair policy. And there is a real danger that even this small bit of leverage for patients will soon be gone as the public becomes accustomed to the horror of hospitals killing off the sickest, most helpless patients.
Until Dr. Lenz came along, no one at this hospital was fighting for my sister; they fought to do damage repair of their public image, to make the doctor and the staff look good, but not a single one of them would fight to save my helpless, innocent sister's life.
An Ethics Committee comprised of hospital employees and doctors with privileges, without a doubt, feels obligated to agree with the attending physician. And should a hospital ever have anything to cover up in patient treatment, this law provides a very convenient vehicle for them to do just that.
Andrea was very ill and fragile, but her treatment was keeping her stable. There was no reason to kill my sister. Her insurance was adequate, and Andrea fought to live throughout all her illness, throughout all the efforts to remove her life support. I'm certain, without this law, there would have been no such attempt on her life.
I'd just like to ask the people who hold all the power in a situation like this, the hospital and the doctors: Was all this fuss, all the negative media attention and emotional turmoil you caused our family really worth the price of having to care for Andrea for just one more week? Because all of it could have been avoided if the hospital have been willing to treat Andrea until she died naturally—which was just one week after the ten days expired.
The law allowed the hospital to steal precious moments from Andrea and from our family by forcing us away from her bedside to fight them and to fight for Andrea’s life.