Who Was Tristan?

Tristan's passion for automobiles, which began as a toddler, remained strong. He could identify all makes and models of cars we passed on our family outings. He memorized the "stats" on the latest high-ticket luxury cars and delighted in sharing this knowledge with anyone who cared to listen. He loved to tell jokes and riddles and genuinely loved life. But Tristan had darker moments, too. Events of his life and of the world caused him great anxiety and distress.

Tristan was a worrier! A chain of events over the course of his last few months led to a depressive episode which on February 26, 1998, precipitated our placement of Tristan into a private psychiatric hospital because of his suicidal ideations. Tristan was dead six days later. Although there are disputes over his actual cause of death, the facts of a restraint and seclusion the evening of his death are not disputed.

Five staffers restrained Tristan face down on the floor and used a towel and a bedsheet wrapped around his mouth to prevent his spitting or biting. When we were notified, Tristan was already dead.

An indictment was brought against one staff person who took part in the restraint; a jury found this individual not guilty.

With all of his own problems, Tristan always worried and fretted over all the other children who, in his opinion, had problems more severe than his own. He had a big heart and never lost his ability to lighten up a room with his crooked smile and dry wit!

My husband, Richard, and I will continue to work to see that unsafe practices are changed and that laws are passed to regulate the use of restraints and seclusion in hospitals and treatment centers. We have met with Congressmen since Tristan's death, and I testified before a Senate committee in Washington, D.C. in April of this year.

June 25, 1999 would have been Tristan's eighteenth birthday, and on that day, an administrative order came out of the White House which put into effect the following:

Eliminating the use of restraints except as a last resort. These new regulations will prohibit the use of inappropriate physical or chemical restraints in acute care, psychiatric, rehabilitation, long-term care, and children's hospitals participating in the Medicare program, except when patients are in danger or are endangering the health and safety of others and only with a written order of a physician. The regulations also require staff to be educated and trained in the safe use of seclusion and restraints, as well as the techniques for handling behavior, symptoms, and situations that traditionally were treated through the use of restraints and seclusion. Currently, restraints are sometimes used by facility staff as a way to discipline patients who are difficult to control.
New reporting requirements to hold providers accountable. These new regulations require providers to inform the Health Care Financing Administration (HCFA) of any death that occurs when it is reasonable to assume that the death was caused by the use of restraints or seclusion. Any facility that is found to be out of compliance with the new regulations will be prohibited from participating in the Medicare and Medicaid programs.
New efforts to educate patients and their families about their rights. The new regulations require hospitals to notify patients about their rights, including the right to be free from restraints and seclusion. Each patient must be informed of his or her right to request or refuse treatment and to be involved in the development and implementation of his or her plan of care. It also includes patients' rights to formulate advance directives and the right to be expect that the hospitals will comply with these directives.
New commitment to extend these protections to all providers covered by the Medicaid program. Included in the announcement was the fact that Secretary Shalala has agreed to work to extend similar protections to residential care facilities for children and other providers participating in the Medicaid program by the end of the year.

"Tristan, may the foundation always work to make the lives better of 'all the other children' who face similar challenges that you did. May we always strive to help those children and their families reach out of the darkness and into the light of triumph at the top of their mountains."

—Jean Allen

On the battery at Charleston, South Carolina! July, 1987 (Tristan, Zachary, Nathan, Cassandra, Wendy)	At the North Carolina State Zoo in Asheboro, NC November, 1986
Seems like it was always somebody's birthday! September, 1987	Tristan gives sledding tips to Caitlin and Andrew January, 1993
Tristan swings Andrew and Caitlin April, 1993	Tristan takes his job as big brother seriously! December, 1988