Remedy sought for flaws in health care
By EMILY DONOHUE
The Saratogian
Tuesday, May 26, 2009
FULTON COUNTY — While Beverly Alves’ husband, Joseph, battled pancreatic cancer in 2006, she battled a medical establishment that she says was ill-equipped to handle the coordination of care her husband needed.
“It should’ve been a ballet; instead it was a whole bunch of great ballroom dancers,” she said. It didn’t have to be that way, she maintains. Her husband’s medical situation was complex and his disease almost certainly fatal, but palliative care — which aims to coordinate specialists, nurses, social workers and other health care professionals in order to best care for patients — would have made his last months more manageable.
On an individual basis, the doctors and nurses who treated her husband did a good job, Alves said. They failed, however, to communicate with each other and coordinate the complex care Joseph required in the waning months and days of his life.
Alves, along with Dr. George Jolly, a Saratoga Springs internist and geriatrician, is hoping to raise awareness and support for a single-payer health care system. That type of system, she said, would include the palliative care that could have eliminated the lack of synchronization she and her husband dealt with during his illness.
“I had to plead and beg for him to get necessary tests and procedures,” Alves said. After a gastroenterologist determined there was a mass on Joseph’s pancreas, the doctor ordered a biopsy of both his pancreas and his liver to make a diagnosis.
It took three weeks of daily phone calls to a local hospital, Alves said, before her husband was seen, but for some reason that hospital only performed the biopsy on his pancreas. When the Alveses took the results to an oncologist, he said there was nothing he could do until Joseph had the liver biopsy.
It took two more weeks of phone calls before Alves was able to get her increasingly sick husband into the hospital for that biopsy. Finally, five weeks after the initial tests were ordered, an oncologist was able to give the Alveses the devastating diagnosis of pancreatic cancer.
Getting the diagnosis, Alves said, was only the beginning of months of failed communication and conflicting advice from the bevy of doctors, nurses and specialists her husband saw at several hospitals in the area.
Their situation was complicated, she added, by the fact that they lived in Ephratah, a small town in rural Fulton County. The local hospital is small and was not equipped to handle the complex care Joseph required. Alves was forced to transport him to doctors’ offices and hospitals in Schenectady and Albany, driving upwards of an hour each way. Their doctors, Alves said, never seemed to make the connection that she was trying to care for her husband on her own in a rural community. One doctor gave prescriptions that required her to travel to a faraway pharmacy every 48 hours. Another suggested a treatment to Joseph that would have required Alves to transport her then-paralyzed husband to and from Albany every day without seeming to realize the impossible burden that placed on her.
In the final days of her husband’s life, as she sat by his bedside in an Albany hospital, the lack of communication between doctors was particularly acute, Alves said.
His living will was misplaced by hospital staff, so Alves again got verbal confirmation from her husband that he did not want to be resuscitated should the need arise. She communicated this to his doctors, she said. Despite that, in the middle of the night, doctors woke Joseph up to ask him if he wanted to be resuscitated.
“The care, because of the lack of coordination, was atrocious,” she said.
In those final days, different doctors at the same hospital alternately told Alves that she should take her husband home because there was nothing that could be done and he was taking up a needed bed, that he was too critical to be moved and needed to stay, and that he should be in Hospice care. Never, she said, did anyone offer to help her make a decision or work out the complicated details.
“The last few months and days of a person’s life are the most important and should be treated with compassion,” she said.
Her husband died Dec. 18, 2006. “I accept the fact that there was nothing they could do to save my husband’s life … what troubles me is they could’ve made his last days better,” Alves said.
Since struggling to coordinate care for her husband, Alves has become involved in a local chapter of Single Payer NY, a movement advocating for a bill, HR-676, that has been introduced by Rep. John Conyers Jr., D-Mich. That bill, introduced every year since 2003, aims to create a publicly financed, privately delivered nationwide health care program. Advocates say the system would eliminate the layers of paperwork-generating bureaucracy that currently plague health care and drive up costs. Essentially, the bill creates a Medicare system for everyone, not just people over 65.
If palliative care had been available for her husband, “there would’ve been a team,” Alves said.
“They would have been following him, not just the floor.”
That kind of coordination is made nearly impossible, Dr. Jolly said, in the country’s current fragmented health insurance system. “In our current system … with all different kinds of payment, it becomes very hard to coordinate,” he said.
“A fragmented system is poisonous for the patient and the family,” he added.
Both Alves and Jolly said they are dismayed that a single-payer plan does not seem to be on the table in President Obama’s health care reform discussions. In the plans, he is advocating “all the old flaws of the present system be maintained,” Jolly said.
“We’re not espousing a political philosophy, really — what we’re saying is we’re all in this together … any one of us can get sick at any moment and lose our insurance,” Jolly said. “We don’t have to allow ourselves to remain vulnerable.”
Conyers’ single-payer bill has many components, but its palliative care aspect is of particular import to Alves. She called his office to urge him to add palliative care to the bill and in early January received word that it had been added to the 2009 version.
HR-676 currently has 77 co-signers in Congress. On April 21, the Saratoga Springs City Council voted 4-1 to pass a resolution supporting the bill.