In Their Last Days On This Earth

By Maggie Sieger; Wendy Cole; Dan Cray; Greg Fulton; Megan Rutherford

SURROUNDED BY HER FAMILY

Lucy Shinn could not possibly have stayed much longer in Nebraska where she had raised three children and helped her husband Emil run their 45-acre farm. When Emil died six years ago, her daughter Alice Albers insisted that her mother move in with her and her husband and daughter in Melrose Park, Ill.--even though Lucy was in her mid-80s, near death from pneumonia, unable to walk and unhappy to be leaving her home. "After my father passed away, she just couldn't stay by herself," Alice said. "She was lonely and wasn't eating. My brother had died, and my sister works full time, so it would have been hard for Mildred to take care of her. She had to come here." Sending Lucy to a nursing home was never an option. "She didn't want to go, and I didn't want to send her," said Alice, the youngest of Lucy's children.

Lucy thrived in her new environment. With three generations of her family watching over her, she rapidly recovered from her pneumonia. While age created its own set of problems, it was still a shock when cancer of the urethra was diagnosed in November 1999. Lucy didn't want surgery, and her age put chemotherapy and radiation out of the question. "I didn't know how I would handle the cancer," Alice said. "I was afraid it would be too much for me." Still, the desire to have her mother remain at home was the overriding factor. Her daughter Renee, 26, who works at the National Council of State Boards of Nursing, knew something about hospice and mentioned it to her mother. When Alice asked Lucy's doctor, he was almost relieved. "He told me he had been wanting to talk to me about it," she said. It was Renee who knew it would be the best thing. "We're a really close family," Renee said as she sat with Lucy's fragile hand in hers last July. "It wasn't really a hard decision because we knew she'd need the love and support of her family."

Lucy didn't like to talk about death, although she was aware of its nearness. She picked out her casket and a dress to be buried in, and she made all her own funeral arrangements. She told Alice not to hook her up to any machines.

She liked being part of the bustle of a family and enjoyed spending time with visitors (including 10 grandchildren and 20 great-grandchildren) who came to see her. And she had something to look forward to. "I'm going to dance at Renee's wedding in September," Lucy declared brightly. "I don't boogie--I'm too old. But I can polka." Lucy Shinn did not get to dance that last polka. Around 2:45 p.m. on Sept. 1, after a final kiss from her daughter, she died. --By Maggie Sieger

AS READY AS HE CAN BE

Bruce Teigen has six more thank-you notes to write. But his fingers, chafed and bloated, can't grip a pen very well anymore. He is blind in his left eye and has blurry vision in his right, but Bruce, never a complainer, vows to complete the chore in the coming days. His mother Phyllis Moore pulls out a stack of blank greeting cards for him to choose from. "This one says, 'With special thoughts of you,' and has a cute teapot on it," she calmly tells her son as he sits on his well-worn living-room rocker. "This one has a little girl with flowers." He's not sure exactly what he will say in his farewell notes to his three sisters and two stepsisters. He figures the words will come to him when he starts to write. The hardest one will be to his mom, who has spent virtually all of Bruce's 39 years worrying and caring for a son who will soon lose his lifelong struggle with diabetes. "I'm not looking forward to the end, but things will certainly be easier," allows Phyllis.

Bruce got out of the hospital in late March. Immediately, he and his family got busy--planning for his death. Dialysis might prolong his life, but Bruce adamantly refuses it. "Lying down for four straight hours three times a week with needles stuck in me to filter my blood--that's not the kind of life I want," he says. His doctors, some of whom initially protested his decision, gave him a week, a month tops. He said it felt good, even empowering, to tell his doctors what the next step would be, rather than the other way around--even if the price was death. At his instruction, his mother and his sisters Twilia and Tammey promptly went to a local funeral home to select a casket and an urn. He trusts their taste better than his own, though he has decided to wear his white Chicago Bears sweater, one of his favorites, for the final visitation. For the service, he's compiled a tape of songs, starting with the Beatles' Let It Be and ending with Eric Clapton's paean to his dead son, Tears in Heaven, saying, "They remind me of when I was young." He's considering adding one of his mother's favorite Vince Gill songs, Go Rest High on That Mountain. Bruce has decided to be cremated, following the wake and memorial service. "The cemeteries are getting so filled," he explains.

Whenever he leaves home now, even for a brief shopping trip by wheelchair or to see a relative, his most valuable possession is his one-page do-not-resuscitate order, which ensures that all life-sustaining treatment will be withheld in the event his heartbeat or breathing stops. "Because it's signed by a doctor, health workers tend to honor it more reliably than a living will that has similar instructions," explained his hospice nurse JoAnn Shenk.

Illness has been a near constant companion to Teigen. He had diabetes diagnosed at the age of 18 months, after inexplicably lapsing into a coma. Over the years since, he's endured a ruptured appendix; breathing problems; gangrenous feet, which led to the amputation of his left foot in 1998; and seizures too numerous to count. Still, he's been a model patient, giving himself daily insulin shots since he was 10, watching his diet and constantly monitoring his blood sugar. But the severity of his disease continued to make him prone to seizures and life-threatening infections. He never finished his senior year of high school because of health complications, and failing eyesight forced him to stop working at McDonald's after 1981. He has never since been strong enough to hold a job.

Yet Bruce has had no desire to give up on life. He has always been buoyed by the presence of supportive friends and family. When he felt well enough, he'd go duck hunting and fishing but never far from home in Downers Grove, Ill. Though he rarely travels more than a few miles from there, Bruce has amassed a baseball-cap collection featuring the insignias of 35 states. "I'll have every state west of the Mississippi after I get Kansas, Nebraska and Oregon. And I have friends going to those places to get them for me."

He's a little impatient because he wants his brother-in-law Terry to have the complete collection before he dies. He's already given his fishing gear to another brother-in-law. He divvied up his two gemstone rings and a gold necklace among his sisters and has bequeathed his soft-rock CD collection to Twilia, who has similar musical tastes. "That's about all I have," he notes matter-of-factly. Making the decisions himself about what happens to his few possessions lets him feel better--so much better that his health has actually improved a bit since he rejected further treatment. "He gets comfort from knowing things are in order," explains Shenk, "and decreased stress often increases the length of life."

This small reprieve, if it is that, has many around him a little confused. "People aren't sure what's going on," says Twilia. Bruce, who has left no detail to chance, isn't concerned. "I feel at ease. My kidney will shut down whenever it's ready." --By Wendy Cole

THE DEVOTED SON

Dazed and irritable from six months without a full night's sleep, James Elliott curses at the sound of a banging spoon. Then he remembers why he listens for it in the first place: it means his mother Ella can't breathe. Leaping to her bedside, James grabs a suctioning device and calmly pulls the mucus from his mother's tracheotomy tube, as he has every two hours since Ella, 73, was diagnosed with terminal throat cancer in April. "I don't know what I'd do without him," Ella silently mouths. The tube, which enables her to breathe, has robbed her of her voice.

Until recently, James, 36, would never have imagined himself as a nurse. He's an ex-Army paratrooper who loves motorcycles and lives by the credo "Just because you're a nice guy doesn't mean you can't kick a little ass." He had just landed what he calls his "dream job," detailing motorcycles for Harley-Davidson, when Ella learned of her cancer. He realized he was about to lose his mother, and everything changed. He quit the new job, left the Army Reserves, postponed a pending marriage and set out to provide 24-hour care at Ella's modest home in Artesia, Calif. "This is my last chance to spend time with her," he explains. "It's not easy, but I could never throw her into a nursing home. Never." Janice Calabrese, a hospice nurse who visits twice weekly, says the stress wears on James, but nonetheless, "he's done an amazing job of putting his life on hold so they can spend this time together."

Ella's other sons, John and Robert, visit periodically, but James shoulders the caretaking. Until she got sick, Ella was a no-nonsense home-maker who was no stranger to the back of a motorcycle and gave the finger to anyone who dared laugh at "the old woman on the bike." She remains strong spirited despite losing 70 lbs. since December. Last month she had James, who plays guitar, take her to a nearby party for a jam session that lasted until 3 a.m. It was the first time either of them had left the house in months. James is openly worried about how deeply Ella's eventual death will affect him. "As hard as it is to go through all this," James says, "I'd never trade this time together for anything." --By Dan Cray

THE HIGH COST OF DYING

For Barbara Lane, 53, and suffering from amyotrophic lateral sclerosis, Haven House, a 20-bed residential hospice in North Atlanta, is living up to its name. ALS invariably kills, but the timing is hard to predict, which runs afoul of the hospice requirement that a patient certifiably have no more than six months to live. Coverage can be extended only if deterioration is continuous or if death is predictable within subsequent six-month periods. Doctors determined that they could not certify Lane, after she had spent a year in her original hospice, a third time, but Haven House executive director Metta Johnson was willing to make that call. "This is one of many areas where the laws need to change," says Johnson. "ALS patients get worse, but it can be slow and unpredictable."

More than 90% paralyzed and unable to speak by the time she came to Haven House, Lane controls her world by computer. The ALS Association of Georgia, with help from Lane's church, installed $2,000 worth of software in her omnipresent laptop. She can move her left shoulder enough to make her elbow control a mouse, allowing her to scroll through the alphabet--and communicate. Taped up on two walls of her room are one-page instructions to the staff that detail just how she is to be positioned at the computer and given drinks, including the angle of the straw in her mouth.

Loss of independence, she writes, has been the hardest part of the disease. It takes nearly two hours for her to be bathed and another two to be fed and medicated--with some 12 pills daily. "The disease just takes so much time," says her daughter Kita Turner, 36. The family pays a private nurse $150 a week for help beyond what the hospice staff can provide. Along with paying for a private nurse, Kita and her husband John, both city of Atlanta employees, spend about $300 a month on medications not covered by Medicare. Ultimately, respiratory failure kills ALS patients, and Lane has signed a do-not-resuscitate order, which will keep her off a ventilator. An ordained Baptist minister, she says she is "ready to do whatever God would have me do." --By Greg Fulton

A DOCTOR'S JOURNEY TO THE OTHER SIDE

Just as the title doctor becomes part of a physician's name, so the role becomes part of his identity. Advanced esophageal cancer, diagnosed three years ago, forced oncologist Dan Frimmer to retire at age 58. The cancer doctor had become a cancer patient, but 25 years of medical practice prevented him from viewing himself as anything but a healer. "Of what value am I to people now?" he asked himself after his first round of chemotherapy and radiation, then answered his own question: "I could advise people from a different point of view--from the other side of the stethoscope."

Frimmer's medical expertise enabled him to translate his personal experience as a terminally ill patient into advice to doctors. He began lecturing health professionals at hospitals near his suburban home outside New York City. "There has to be more time given to patients," he said. "Doctors should have a knowledge of how difficult the tests are for patients. They should understand what it feels like to do a CAT scan and have diarrhea in the middle of the test." Most important: "Let patients do the talking. Learn to listen. Doctors give answers without listening to the questions."

"We listened to him because he was a physician. We doctors somehow feel that the 'M.D.' protects us. It hit us that doctors die too," says Dr. Lauren Shaiova, who treated Frimmer for pain and arranged to have him speak at Beth Israel Medical Center in New York City. Frimmer was his own best end-of-life student. He filled out an advance directive, updated his will, organized his finances, assigned power of attorney, sold off some of his photographic equipment--and allowed his wife Debbie to do something he'd previously resisted: "I don't like animals, but when I got sick, I said, 'You'll need something to replace me. Get a dog.'" Debbie did; she named it Tikvah, Hebrew for hope. "Everyone needs a little hope," she joked.

Frimmer had always been active in the Jewish community, but his illness renewed his focus on his faith. He attended a weekly Torah-study class and began collecting research on Jewish healing services and intercessionary prayer. He said he wanted to become a resource for others, but clearly he was also on a personal quest to examine the frontiers of his own mortality. Companions joined him on his exploration. His daughter Dara, a theology student at Harvard with plans to become a rabbi, embarked on a chaplaincy internship at a Boston hospital. The confluence of her father's terminal illness and her career choice created opportunities for a unique dialogue. As a doctor, Frimmer had helped Dara with her science homework in high school. Now, as a patient, he helped her with her study of sickness and dying. With the skills learned in school and in her internship, Dara was able to help her father open up about what he was feeling.

By March, Frimmer's illness had worsened. He suffered from anemia and renal failure. A condition called lymphedema caused fluid to accumulate in his legs, which made walking difficult, then rise into his chest, which made breathing as laborious as "trying to blow up a balloon in a bowl of Jell-O," he said. Unable to get comfortable, he slept sitting up, just an hour or so at a stretch. He was reluctant to use enough medication to quell the pain. "On a good day, I would guess the pain is life affirming. It lets him know he's still here," said Dara.

But the greatest hardship for this fiercely independent man was becoming totally reliant on others. He needed Debbie to help him shower and dress, to bring him food. A stair glide was installed to enable him to go downstairs during the day, but he needed her assistance to hobble over to it and climb on. Debbie rarely left the house except to drive Dan to his medical appointments. In the last weeks before her husband died, she acknowledged without resentment that "I don't have a life. Everything revolves around Dan."

Along with his wife, who was able to care for him full time, he had a circle of close friends that included a couple of nurses, one of them a bereavement counselor; an ethicist who specialized in medical issues; several doctors; and a former patient, Steve Kalafer, who years earlier had been treated by Frimmer for non-Hodgkin's lymphoma, now in remission.

In April, Kalafer provided Frimmer, who had been an accomplished photographer before he got sick, with a unique opportunity to reflect on his life. He arranged an exhibit of Frimmer's pictures. Selecting his favorites, seeing them printed and mounted was deeply satisfying. "Looking at my photographs made me realize there were very few places in the world I wanted to go that I hadn't been, other than Antarctica and the base camp at Everest," Frimmer observed. "I can sit back and look at these pictures now and realize these places will never change in my memory because I'll never be back to see them. As beautiful as they are now, that's how they'll always be."

By early July, Frimmer was actively dying. His nurse friends alternated spending nights with him to enable Debbie to get some sleep. Dara flew in from Boston.

The end of life is often likened to the beginning. As Frimmer's grasp on life loosened, the accoutrements of infancy began to accumulate. A baby monitor alerted Debbie to any sounds of distress when she was out of the room. His daughter's old Sesame Street quilt draped his swollen legs. When awake, he gazed at visitors with the glassy, unblinking stare of a young child; he dozed frequently. Relinquishing control of his pain medication, he allowed the application of a timed-release fentanyl patch, later an intravenous line.

On Thursday, July 13, in the early evening, Frimmer fell into a deep sleep and could not be roused. His body shut down; his breathing became heavy and irregular with long pauses between inhalations. His skin grew clammy. His fingertips became tinged with blue. At 4:15, before the sun rose on Friday morning, he died, at 60, at home, surrounded by loved ones.

Frimmer's favorite saying in the last months of his life was, "You can't die cured, but you can die healed." What did he mean? Explained his rabbi, Arnold Gluck: "Healing is about a sense of wholeness as a person, and that wholeness includes understanding our mortality, our place in the world--that death is not a betrayal of life but a part of it." His friends and family believe Dan Frimmer died healed. --By Megan Rutherford