April 24, 2012

Hospice founder dies under care of his former student

Dr. Martha Twaddle speaks to a patient at the Midwest Palliative & Hospice CareCenter. (Antonio Perez, Chicago Tribune / April 20, 2012)

Dr. Harry J. Miller had recruited Dr. Martha Twaddle to the care center. Decades later, he became her patient as he battled prostate cancer.

After 40 years at Evanston Hospital, Dr. Harry J. Miller retired in 1995.

The same year, he was diagnosed with prostate cancer. It remained quiet for about a decade, but by 2007 he was in pain, the chemotherapy and radiation were taking a toll and he knew he could not be cured.

He called Dr. Martha Twaddle and asked to become her palliative care patient.

Twaddle has treated thousands of patients in her 23 years at Midwest Palliative & Hospice CareCenter. But this one would be different.

Miller was Twaddle’s teacher, the mentor and friend who had recruited her for the hospice he helped found.

“It’s difficult to find the words to describe when your teacher comes in to be your patient,” said Twaddle, 53. “There is an awesomeness to it that is profoundly humbling. Also frightening, because you want to do your best and more.”

Miller’s family said he never thought of looking anywhere else.

“There was no question,” said Miller’s wife, Lucia. “When he decided it was time to get palliative care, he called her immediately. … We never saw anyone else.”

“Dad completely trusted Martha Twaddle,” said Lele Barkhausen, one of Miller’s five children. “He knew she would make the right decisions to fulfill his wishes, and she did.”

A pioneer in hospice care, Miller died earlier this month at 86. The young doctor he showed how to care for people at the end of their lives accompanied him to the end of his.

A few weeks before he died, on the last office visit he was able to make, Miller broached the question: What was going to happen when he died?

“I said, ‘Well, first off, I’m going to be a blubbering mess,’” Twaddle remembered. “We laughed.”

Miller was drawn to the hospice movement blossoming in the late 1970s, when he was working as a hematologist at Evanston Hospital.

“He was dealing with cancer patients all the time,” said Dr. Harry Jaffe, a colleague of Miller’s at Evanston Hospital who now serves on the CareCenter’s board. At the time, Jaffe said, blood cancers like leukemia and lymphoma were usually fatal.

Miller, who often began pathology lab sessions by reading a poem aloud, was deeply affected by the deaths of his patients, said his wife. He was so shaken by the death of a little boy he had become attached to that he began referring all children with hematological disease to Children’s Memorial Hospital.

Dismayed at how little the medical profession had to offer people as they neared death, he was intrigued when he heard about the hospice movement in England. He began meeting with a group of people trying to start a hospice in the north suburbs. In 1978 they established the Hospice of the North Shore, now known as Midwest Palliative & Hospice CareCenter.

Miller was on the hospice board when he met Twaddle in 1986. She was chief resident at Evanston Hospital, and Miller, whose specialty now also encompassed oncology, was one of her teachers.

He was impressed, he later wrote in a hospice report, by her intelligence and focus on relationships (also by her devotion to the Millers’ Portuguese water dog — she dog-sat when they traveled).

In 1989, when he was chairman of the hospice board, he told her he had the ideal job for her, as the hospice’s medical director.

“I said, ‘What’s a hospice medical director?’” she said.

She wound up taking the post, and in 2004 was appointed chief medical officer.

For years after becoming Miller’s doctor, Twaddle treated his pain and other symptoms. In August, with bone scans showing that the illness had spread, he told her he thought he should be in hospice care.

“We talked about what would happen at the end of his life,” Twaddle said. “As with most physicians, he had some pretty strong feelings about where he wanted to be, and also some fears about what it could be like. Pain and a sense of being out of control were very frightening to him.”

She was honored by the trust he showed in her.

“In an exam room one time he said to me, ‘You know, Martha, when all these different treatments aren’t helping, I don’t want to keep fighting. If all I’m doing is suffering, I don’t want to keep pushing.’ I said, ‘I know, Harry.’

“He said, ‘You’ll be there, won’t you?’ And he said — he said it several times — ‘I don’t want to be a burden to you.’

“I said to him, ‘Harry, you’ve invested 27 years of training for me to be with you now. It’s not a burden. It’s a privilege.’”

Honoring Miller’s wish to die at home, the CareCenter arranged for a hospital bed to be put in the Millers’ Evanston apartment, in front of the living room window.

“He had spent his life training people, including Martha Twaddle, to be giving this care and treating (patients) with dignity,” said Barkhausen. “And that’s what he was able to receive.”

Twaddle canceled a trip she had planned to take at the end of March. “I knew we were getting very, very close, and he had asked me to be there for him,” she said. “And I took that very, very seriously.”

He began to grow agitated, a symptom they had expected and discussed. She had told him that the agitation could be treated and that the medications would make him sleep. He told her that when that time came, he would find sleeping a comfort.

Two days before he died, Twaddle visited and found him restless and distraught, Lucia Miller said.

“She said, ‘I just feel, Harry, that you’re not enjoying life very much any more. Is that true?’ He said, ‘Right.’

“She said, ‘Well, I think it’s time for me to really take over and tell you what to do. Is that OK?’ And he said, ‘Oh, yes, please do.’”

The student took final charge.

She increased his medication. Miller slept most of the time. His family gathered. At Twaddle’s suggestion, they talked quietly and told stories around the bedside. Barkhausen and her brother played one of their father’s favorite Frank Sinatra albums, and danced around the room.

At one point, as Twaddle was helping him turn over in bed, “He had hold of my hand,” she said. “I heard him whisper something. I put my head down and he whispered, ‘I love you,’ and kissed my hand.”

“It was just a love affair. They really loved each other,” said Lucia Miller.

On April 13, the hospice pioneer died at home, in peace and surrounded by his wife and all five of his children. His memorial service was held Saturday at the Unitarian Church of Evanston.

“It was the perfect death,” his wife said. “He was never in distress. … It was a beautiful, beautiful thing.”

“In a sense, he made it happen, because he helped create this very service,” Twaddle said. “It was exactly what he wanted. It was exactly what he strove to create, for himself and for others. He was teaching us how to do it well. Even as he died, he never stopped teaching.”

And the student had given the correct answer when her teacher asked what was going to happen when he died. Right down to the blubbering mess.

Article originally published in Chicago Tribune April 22, 2012