SOQUEL, Calif. — Marilyn Cronin was too sick to live. But she wasn’t ready to die.
So she curled up on the sofa of her Soquel mobile home, next to a bucket for vomit, and cried. Suffering from liver failure and lung disease — suspended between health and death — she braced herself for the next hospitalization, then another, and perhaps still others, until the last one, when her suffering would end.
Then, unexpectedly, relief arrived: A cheerful nurse practitioner with a starched British accent pushed open the mobile home door and pulled up a chair.
For two hours, Karen Gossage just listened. Then the two women mapped out a plan: Which medicines might help. Where to get a walker. How to manage symptoms at home to prevent a midnight rush to the emergency room. Who would help her at the end.
What was extraordinary was not just the thoughtfulness of the conversation, but its rarity — and, if replicated, how profoundly it could alter modern medicine.
This seemingly simple, yet pioneering program — known as “outpatient palliative care” — is part of an experiment sponsored by the Palo Alto Medical Foundation, soon to expand throughout much of the Bay Area. A similar innovation will appear in San Jose in the fall with the opening of the Palliative Care Center Silicon Valley, the first independent stand-alone facility of its type in California, run by Hospice of the Valley.
Palliative care is not hospice, which also focuses on emotional support and relieving symptoms for people in the final six months of a terminal illness. Palliative patients may have several years left.
And it does not require giving up the chase for a cure, as hospice does. In fact, palliative care can ease illnesses that aggressive treatments often trigger.
But neither is it a hospital, where aggressive care at each crisis can cost tens of thousands of dollars.
Palliative counseling enabled 77-year-old Joseph Weigand, also of Soquel, to enjoy oceanfront drives and trips to his beloved office — and gave him the chance to stand his ground against dialysis at the end of his life. Gossage’s gentle probing revealed that the quality, not quantity, of his life matters most to this deeply spiritual man with kidney, lung and heart ailments.
“It was start-to-finish information, and so very important and helpful,” he said.
Life-prolonging dialysis? Not for him.
“It was the first I’d heard him say that,” said his daughter Kathy Baazard, who is caring for him. Heavy-hearted, “I had to leave the room. He opened up, and said things that hadn’t been said.”
In Foster City, a palliative care home visit meant that retired Air Force flight surgeon Dr. John Meyers could nap and watch Wimbledon on TV, instead of undertaking a grueling trip to a clinic.
Because Meyers is weak and cannot walk, even a medical appointment is tough on the 83-year-old and his petite wife.
“It totally wipes him out,” Susan Meyers said. “So it’s comforting and a relief for me now to have a ‘team’ to work with me.”
Without such support, it is natural for caregivers to panic when new symptoms appear, or old ones worsen. The medical maelstrom of a crisis may whisk away thoughtful choices on the conveyor belt from the ER to the intensive care unit.
“If someone’s only real resource for symptom control is the hospital, can you blame them for going?” said Dr. Neal Slatkin, chief medical officer of Hospice of the Valley, which will open Palliative Care Center Silicon Valley.
“But why wait until someone feels so bad that they have to go?” he asked. “It’s much more cost-effective and humane to better control the symptoms.”
Yet, the high-cost health care system rolls on largely ignoring the kind of ongoing in-home care that Cronin, Meyers and Weigand received — even though reducing ER visits and repeated hospitalizations saves society bundles of money. One study showed a $7,000 savings per hospital admission for palliative care patients compared with those without palliative care.
And as the population ages, the costs will soar. Today, 47 million Medicare beneficiaries cost the nation a half-trillion dollars a year. In 2020, when the “gray tsunami” engulfs the nation, 89 million people will be on Medicare and the cost of care will be staggering.
One reason is that U.S. health care’s “fee for service” system rewards quantity of care by paying providers for each procedure, test or clinic visit. That leads to cascading costs as ailing elders repeatedly receive expensive high-tech care.
High-tech treatments also buoy doctors’ economic value. A little-known “relative value unit” measures everything a doctor does, with higher scores for sophisticated treatment and lower scores for face-to-face time. For instance, Medicare awards 2 units for a 15-minute office visit about a fever and sore throat. Forty minutes of office counseling for a patient with multiple chronic illnesses gets 4 units. A coronary bypass surgery counts for more than 60.
Doctors earn no units at all for conversations about end-of-life planning, family conferences or coordinating care with oncologists, radiologists, cardiologists or other doctors — even though such efforts limit 911 calls and hospitalizations, reducing costs to society.
“There is a reason why outpatient palliative care has not exploded onto the American medical scene — because the reimbursement is relatively so poor,” Slatkin said.
So Alzheimer’s patients get feeding tubes and 90-year-olds get colonoscopies, but few have discussions about the decisions that could spare them expensive and often futile treatments.
Experts expect that the relief of suffering and the cost savings seen in experiments like those in the Bay Area will encourage the public and policymakers to see palliative care as promising an option for seriously ill people as it has been for Cronin.
The cure was Cronin’s secret: Between her despair and delirium, she dreamed of recovery.
She is only 58. And a monthlong hospitalization for liver failure and lung disease scared her so profoundly that she quit cold turkey a lifelong addiction to cigarettes. She also stopped her daily bourbon-and-Cokes.
Sober, she hoped to swim again in her brother’s pool in Los Banos and visit relatives in Red Bluff. Maybe she would even get on a liver transplant list.
But wrenching pain, exhaustion, nausea, piercing chills and slow suffocation drained her hopes.
“I was miserable. I had diarrhea all the time. I was throwing up all the time. I was just laying here every day, pulled up with a blanket, I was so cold,” said the former waitress. “What I wanted to do was just die.”
With Gossage’s help, suddenly she had a plan: methadone or Dilaudid for pain, nebulizers for breathlessness and Haldol for vomiting. They ordered a walker, shower seat and portable toilet. A social worker linked her with Alcoholics Anonymous, worked out payment for Cronin’s caregiving partner and helped her plan end-of-life choices. A “care manager” coordinated the entire plan, like an orchestra conductor.
Cronin’s suffering has largely abated in the four months since nurse Gossage first visited the mobile home. She made it to Los Banos and Red Bluff. The ashtrays and bottles are gone, and she’s strong enough to clean the living room.
And she has a new friend.
“She’s a big support,” Cronin said, hugging nurse Gossage. “Without her, I’d probably be dead right now.”
©2012 San Jose Mercury News (San Jose, Calif.)