Dan Tobin, M.D., is a palliative care physician consultant integrating advanced illness/end-of-life coordinated care programs within the VA Healthcare Network Upstate NY and the VA New England Healthcare System and is the Director of the Center for Advanced Illness Coordinated Care. Dr. Tobin has authored training manuals and health service research articles focusing on the integration of advanced illness/end-of-life care within health plans and health systems. He is the author of Peaceful Dying: The Step-by-Step Guide to Preserving Your Dignity, Your Choice and Your Inner Peace at the End of Life and co-author, with Dr. Joanne Hilden, of Shelter from the Storm: Caring for a Child with a Life-Threatening Condition.

A vision for the future: Taking control at the end of life

By Dan Tobin

The passion to help others started smoldering inside Laura Letson a long time ago. Her father fueled it as a firebrand union man. Her mom stoked it by fighting on behalf of fellow civil servants.
As the only girl and the baby in the family, she grew up tough as the New York City she was raised in.
So a few years ago, when her dad’s heart first began to fail and his health steadily worsened, that passion quickly became fully engulfed: She would do whatever it took to ease her dying hero into a good and graceful farewell.
It’s a duty millions of aging Americans are about to learn first-hand.
After pushing for everything from natural childbirth in the 1960s to longer, healthier lives in the decades since, 76 million baby boomers soon will be demanding information, guidance and relief in what will be their ultimate transition — moving from advanced illness into dying.
A generation that grew up listening to the Rolling Stones and Led Zeppelin will expect innovative products to help relieve severe pain at the end of life. And in a cultural sea change, Americans as a nation will revisit the way they think about death.
This is a generation comfortable taking control, and Letson was no exception. In her role as mother and wife, and as an advocate fighting on behalf of nonprofits and state government agencies, she showed others what dedication and drive could do.
So when her 75-year-old father, William Rosenblatt, developed advanced heart disease in September 1999, Letson hurried from her home in Albany, N.Y., to Florida and stepped in to manage his case.
“There was never any question,” Letson said, “that if I did my homework, and generally made my presence known throughout my father’s illness, the people caring for my father would have no choice but to be attentive and responsive to his needs.”
Along the way, she quickly mastered the process: She focused on the person facing a life-threatening illness; she become an educated advocate for her loved one and she talked openly about medical planning most — from doctor to family member — would rather sidestep. And underlying it all, she appreciated the payoff: As her father’s illness advanced and subtly evolved into the process of dying, she viewed life’s end in a positive and pro-active manner.
And, as Letson would come to see it, as a wondrous and priceless gift.

She called her father Willie. He’d been a printer for nearly 40 years and in 1995 developed advanced heart disease. He did well with a pacemaker, and in 1999 his cardiologist put in a defibrillator implant that he said could make him “a new man.”
But shortly after surgery, Letson grew worried. Her dad’s doctor seemed uncomfortable acknowledging how far the disease had progressed, but Letson felt intuitively that Willie’s life was fading. On Feb. 7, 2000, his cardiologist confirmed her gut feeling: Her dad had three to six months to live.
Then something wonderful happened.
After huddling with her mother, Claire, and two brothers, Letson brought her dad the news. But instead of being panic-stricken, Willie was relieved. “I thought so,” he said, then shared his feelings of “suffocating” when he couldn’t speak openly about his prognosis.
For Willie, a dreadful weight had been removed.
The decision to openly face his dying was the crucial first step in an important end-of-life journey.
Letson offers a powerful example: Her prompt action helped her father, family members and even the medical team confront individual and cultural fears that shroud the dying process. Her next move was to forge a treatment plan.
But she quickly discovered what a delicate dance that can be: How do you try to keep someone alive while at the same time guide them toward a natural and comfortable death?
“With serious, chronic illness, patients and their families face the challenge of hoping for the best health outcome while preparing for the possibility death may occur within the next few months,” says Dr. Bernard Lo, director of the Program in Medical Ethics at the University of California, San Francisco.
But there are signs that Americans are on the verge of a collective breakthrough, beginning with the sort of structured conversations that Letson had with her family. Experts describe this new end-of-life landscape:
— Pain management will become a touchstone of medical plans: “As they age, baby boomers have high expectation for attention to pain control and other quality of life issues by their doctors and they will expect their doctors, among other health care professionals, to be knowledgeable, skilled and caring,” says Dr. Perry Fine, professor of Anesthesiology at the University of Utah and a national expert in Pain Management and Palliative Care.
— A new vocabulary will evolve addressing patients’ psychological and spiritual needs and honoring their cultural traditions.
— New job descriptions will emerge for nurses and social workers as care coordinators, guides for people navigating the healthcare delivery system.
— From the grassroots will grow an extensive community network to support caregiving to ailing parents, as well as demand reforms in insurance coverage and local and state laws.
— Current research funded by foundations will bear fruit by changing the way hospitals and major medical organizations are accredited and deliver care.
— And as more patients use hospice and palliative care for longer amounts of time, they will become household words.
Fashioning a plan for her father put Letson in this movement’s vanguard. After her conversation with Willie, she had hospice aid brought in. She wrote Willie’s doctor, stressing the importance of in-home care. And she explained how her brother David’s death from a diabetic coma had taught her the value of emotional support.
By May 2000, it was obvious Letson’s mother needed help with the caregiving burden. With the blessing of her husband and daughter, Letson moved her parents in with her. Willie now had the best of both worlds: hospice care in his daughter’s house and, when necessary, visits to the inpatient hospice unit in Albany.
By June, Willie felt at peace with dying, but wanted to live the best he could with his remaining time. Tears welled up in his eyes when he spoke to a visitor about David, the son he lost. He shared regrets about mistakes he had made with Claire; family members encouraged him to ask for forgiveness
“Life is so precious,” he told a visitor. “I only want my family to see how much I love them.”
Willie stayed at Letson’s home until year’s end. Nearly a year had now passed since doctors told him he had three to six months to live. At a final gathering on New Year’s Eve, the same day Letson’s daughter turned 13, Willie’s family honored his legacy.
By the next day, Willie’s kidneys were failing rapidly. Letson brought him back to the hospice inn. Just before the ambulance pulled up, Willie looked at his daughter.
“Will I be coming home?” he asked.
“Not this time, Dad.”
“That’s what I thought,” said Willie.
Letson, like her father, knew in her heart this was the way to live with dying — sheltered with dignity and calm, not battered by last-minute turmoil in which dying is considered a medical emergency instead of a time of love and reflection.
On Jan. 3, Willie told Letson he was ready to join David in heaven. He said he had seen his son in a vision.
“The next time you see David,” she replied, “take his hand and follow him home.”
But Willie wasn’t quite ready to let go. He was worried about leaving his wife. Claire knew: She had to give him permission to die.
“Willie,’’ she asked her husband. “Can you hear me?”
Willie nodded.
“Are you still fighting, Willie?”
Again, he nodded.
Then she said gently, “I want you to stop fighting, Willie, and go with the flow. Do you understand?”
Another nod. Finally, to be sure, Claire asked, “Are you still fighting, Willie?”
This time, he shook his head no.
Several hours later, Willie took in his last breath, then let it out.
The lessons Letson learned are those that millions of Americans will one day face. She speaks of “the importance of embracing death as an extension of living.” She talks about “looking beyond the surface to the gifts that the dying process has to offer.”
And, as Letson now knows: “You will not get these gifts anywhere else in life. They are reminders of all the little blessings we can miss if we don’t pay attention.”
Willie had left a letter and asked that it be read aloud upon his death. In it, he spoke of his unconditional love for his family. He apologized for any disagreements they may have had.
Finally, like the daughter who had helped him die with grace, Willie described lessons he, too, had learned in life:
“Nothing is more important in a person’s time on earth than love, happiness and health,” Willie wrote. “Thank you for sharing my life and giving me my greatest moments. I will love you forever.”
Then he signed it:
“Willie, Dad and Grandpa.”

2001, Partnership for Caring, Inc.
Distributed by Knight Ridder/Tribune Information Services.