Statements on Introduced Bills and Joint Resolutions

STATEMENTS ON INTRODUCED BILLS AND JOINT RESOLUTIONS -- (Senate - January 26, 2005)

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By Mr. DeWINE (for himself, Mr. DODD, and Mrs. MURRAY):

S. 174. A bill to improve the palliative and end-of-life care provided to children with life-threatening conditions, and for other purposes; to the Committee on Health, Education, Labor, and Pensions.

Mr. DeWINE. Mr. President, I would like to discuss a bill Senator Dodd and I are introducing today. This is a bill about children, and it covers an issue that is difficult to think about or talk about, but one that is critical to many children and their families in our Nation.

What I am talking about is what we can do when a child develops a life-threatening or terminal illness. How do we make sure we do everything in our power to make a sick child as comfortable as possible and as happy as possible--everything in our power to ease their suffering--when that child is terminally ill. We have a pressing need for comprehensive, compassionate, continuous care for children who are facing death as a result of serious illness.

No parent or family member ever expects a child to die. With today's modern medicine and research advances, it is easy to think that only older people die, but, tragically, we all know that is not the case. That is why today we are introducing the Compassionate Care for Children Act, a bill we introduced previously in the 108th Congress along with Representative DEBORAH PRYCE in the House. This legislation is an effort to help ensure that very sick children receive a continuum of care and that young lives do not end in preventable pain or fear or sadness.

Every year, over 55,000 children die in the United States. Some children will die suddenly and unexpectedly--in a car accident, by drowning, or fire, or by choking. Some may even be murdered. Others, though--thousands of children, actually--will be diagnosed with life-threatening illnesses or diseases that might eventually, over a period of time, take away these children's lives. Children with such illnesses are in and out of hospitals and clinics. They receive chemotherapy and radiation treatments. They might undergo multiple surgeries. They might have nurses and doctors poking and prodding at them nearly all the time. Some of these children are old enough to realize that they might die if the treatments for their diseases don't work. Others are too young to understand that reality.

One little girl--Liza--knew she was going to die. Shortly after her fourth birthday, she was diagnosed with a form of leukemia. For the next year, Liza's parents explored every possible medical option for her and every possible treatment. They took her to doctor after doctor after doctor, and they had access to the most cutting-edge therapies available to treat Liza's disease. Nothing seemed to work. At the age of five, Liza began to ask her mother what would come next, and whether she would soon die after her bone marrow transplant--her last chance for a cure--had failed.

Once the medical treatments had failed, doctors had little else to offer Liza. There was no discussion, tragically, about end-of-life care at the hospital for this little child. No one wanted to admit that they were out of treatment options--that there was no cure--that she wasn't going to get better, have her life restored and her health restored--that she wasn't going to grow up and become an adult and have her own children someday. There was no discussion of that. No one in that hospital wanted to talk with Liza about death, even though this little girl pleaded with them to do so.

Liza's mother told the Washington Post that Liza asked her oncologist to tell her when death was near. This little five-year-old girl asked her doctor to tell her when she was going to die. Yet, on the final night of her life, as this little child lay dying in her mother's arms, near her father and her older sister, Liza asked, ``Why didn't the doctor call to tell me?''

Liza's parents were able to get some hospice care for their daughter during the last three months of her life. Tragically, fewer than 10 percent of children who die in the United States ever receive any sort of hospice care. When children like Liza are terminally ill, parents are forced to make decisions for their children under extremely emotional and stressful conditions. The decisions that confront these parents are ones that they never, of course, expected to have to make. Parents want what is best for their children. They want their children to get better and be healthy. They want their children to be pain free. They want their children to receive comfort and care when they are sick.

God forbid that parents find out their children are very sick--so sick they are never going to get better--so sick there are no more treatments and no more cures--and so sick they know their children are going to die. Those parents will try to do everything imaginable and everything possible in their power to help their children and make them comfortable--pain-free and happy in their remaining days.

Mr. President, we have an obligation to help those parents. Children with life-threatening diseases and illnesses require special medical attention to make their shortened lives more comfortable. We know that. Yet, despite that knowledge, the fact is, current federal law and regulations do not take into consideration the special care needs of a gravely ill or dying child. In fact, these federal laws and regulations get in the way of taking care of these children.

The legislation we are introducing today would help correct the deficiencies in current law and help sick children facing possible death live more comfortably and live with dignity. It would help them receive the comprehensive care they deserve and the comprehensive care we would expect for our own children.

Let me take a few moments to explain what our bill actually does. First, it offers grants so doctors and nurses can receive training and education to enable them to better understand these issues and to help them provide end-of-life care for these kids. The goal of these grants is to improve the quality of care terminally ill children receive. One of the ways we do this is to make sure doctors and nurses truly understand these issues so they can provide the care and be better informed. Our bill also provides money for the National Institutes of Health to conduct research in pain and symptom management in children. This research is critically important to improving the type of care that dying children receive.

An article in the New England Journal of Medicine stated that 89 percent of children dying of cancer die experiencing ``a lot or a great deal'' of pain and suffering. This does not have to

happen. We can change that, and we must. This is simply not acceptable. Research has to be done so that children will not suffer needlessly.

In addition to grants, the second piece of our bill changes the way care is delivered to children with life-threatening illnesses. Right now, doctors, hospitals, and parents have to overcome significant insurance and eligibility barriers to enroll a dying child in hospice. First, to qualify for hospice, a doctor must certify that a child has six months or less to live. The problem with this ``six-month rule'' is that it is harder for a doctor to determine the life expectancy of a sick child than it is to determine the life expectancy of a sick adult or elderly person. A child dying of cancer, for example, may die in six months or six years, making that child ineligible for hospice care that would ensure a comfortable life while that child is alive. It is very difficult many times to estimate how long that child is going to live. This very rigid six-month predictability rule, which denies care, is very inhumane for these kids. It is wrong, and we have to change that rule.

According to Dr. Joanne Hilden and Dr. Dan Tobin, ``Sick children are still growing, which is a biological process very much like healing. So, when a child is diagnosed with illness, such as cancer or heart disease, he or she is much more likely to be cured than an adult.'' Simply put, diseases progress differently in children than adults, and children with terminal diseases get lost in the health care system designed for adults--a health care system that does not take into consideration the special needs of children.

Furthermore, the current system does not allow a patient to receive curative and palliative care simultaneously. In other words, current law does not allow doctors to continue trying life-prolonging treatments--treatments that could cure an illness or extend a life--and also at the same time provide palliative care to that patient. That means that current law does not allow the doctors to go in to provide typical hospice care where you make that child comfortable and do all the things to alleviate the pain and at the same time try to save the child's life.

That is wrong. That is simply wrong. That presents a parent with a horrible choice--a choice that no parent should ever have to make. That is tragic. Palliative care offers a continuum of care--care that involves counseling to families and patients about how to confront death--care that involves making the patient comfortable in his or her sickest hours--care that acknowledges that death is a real possibility.

Federal law requires a person who wishes to receive end-of-life care to discontinue receiving curative or life-prolonging treatment. This should not be an either/or decision for parents. I don't know of any parent who would give up trying to cure a sick child when there was any chance that child might be saved. They should not be put in this position.

Current law places parents in impossible positions. We simply must fix this. End-of-life care should be integrated with curative care so that parents, children, and doctors have access to a range of benefits and services. As I said earlier, palliative care should not be confined to the dying. It should be available to any child who is seriously ill.

That is why our bill creates Medicare and private market demonstration programs to remove these barriers, making it simpler and easier for doctors and parents to make end-of-life decisions for children. The demonstration program would allow children to receive curative and palliative care concurrently. This means children can continue to receive treatment and life-prolonging care while receiving palliative care at the same time. The demonstration program also removes the six-month rule so children can receive palliative care benefits at the time of diagnosis.

I would like to take a moment to tell my colleagues about another girl--Rachel Ann. Rachel Ann was a little girl who did receive palliative care from the time she was diagnosed with a grave heart problem. Rachel Ann had a heart that doctors describe as ``incompatible with life.'' Most babies with heart malformations like Rachel Ann die within a matter of days after birth. Rachel Ann's parents were devastated and distraught to see their tiny baby connected to a sea of wire and tubes, clinging to life.

Rachel Ann's parents were referred to a pediatric hospice and decided to bring their daughter home from the hospital so she could experience life with her family, surrounded by parents, brothers, relatives, and friends at home. Rachel Ann's parents say she seemed truly happy at home. She smiled and wiggled in response to voices and being held. Her brothers doted on their baby sister.

Rachel Ann was able to spend her life at home in comfort with her family. She lived for 42 days and her family was able to make every single moment count. On Christmas day, after spending the morning with her family, Rachel Ann passed away.

Fortunately, Rachel Ann and her family were able to spend as much time together as possible with Rachel Ann as comfortable as possible. Her brothers were able to know their sister and to talk with hospice professionals about what was happening to her. Rachel Ann's parents and grandparents also were able to talk about her condition with hospice professionals and maintained an active role in her care. There was a support system in place for this family.

The terminal illness of a child is an incredibly difficult thing to confront for a parent and family. No one wants to think about children dying. No one wants to believe that children suffer, especially in this age of great medical advances. It is a horrible situation. But, it is one that we must face. We can always do more to improve the care that our children receive. We should continue to support research and finding cures for the diseases and illnesses from which children suffer. But, until those cures are found, and as long as children die from these diseases, we must provide care and support for a dying child. We have an obligation to provide that care and that support.

The bill we are introducing today will be an important step in this direction. It will provide tools and support networks to help grieving families in their time of need. It is the right thing to do, and I encourage my colleagues to join us in co-sponsoring this important piece of legislation.

I ask unanimous consent that the text of the bill be printed in the RECORD.

There being no objection, the bill was ordered to be printed in the RECORD, as follows:

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