When it comes to writing about the one last trip every one of us will take, I’ve got some stiff competition in Southern California.
That’s fine, of course. The more information we all have about negotiating end-of-life healthcare options, the better. But the guy I’m talking about has an unfair advantage.
He’s a doctor, he makes house calls, and his specialty is geriatrics.
Gene Dorio of Santa Clarita handles a pen as well as he handles a stethoscope. He writes what he calls “Doctor’s Diary: Snippets from the frontline,” and, lately, Dorio and I have both been writing about hospice.
“She arrived in the emergency room with nausea and vomiting,” began one snippet last week. “Labs were drawn, and a CT scan of the abdomen was ordered.”
Relatives of the 92-year-old patient were told she had metastatic liver cancer, Dorio wrote, and she was designated for hospice care. But the woman’s sons, including two doctors, had doubts and new tests were ordered. All were negative.
“Hospice was stopped. The patient was discharged a week later with a diagnosis of stomach flu,” Dorio wrote. “She was my mother.”
Dorio’s point was that “hospitals sometimes prey on medical ignorance,” and the focus of his diary is to help educate patients and their loved ones on how to navigate what can be a maddeningly complicated healthcare system.
In recent posts, he’s addressed the lack of hospice oversight as the industry grows and explained the difference between palliative and hospice care. Palliative care is for those who may live for years but want to avoid medical procedures that decrease quality of life; hospice care is for those who are closer to death and choose to avoid all life-extending measures.
Dorio has written about hospitals “shuffling elder seniors into hospice at a rapid rate because it is profitable,” both for the hospice agencies and for hospitals that want to get rid of patients who have hit Medicare reimbursement caps.
He said health insurance companies also benefit from discharges to hospice care, because “they can wash their hands” of a patient’s last health care bills and let taxpayers pick up the tab.
In 2011, I accompanied Dorio on his rounds as he traveled around the Santa Clarita area in a Volvo with 300,000-plus miles on it. On Friday, I hitched another ride with him, this time in a fluorescent green Volkswagen Beetle. He told me he finally had to send his Volvo into hospice.
Dorio said he has seen a huge explosion in the number of hospice agencies in the last several years, and he’s a big supporter of the option for those with terminal illnesses who choose not to be subjected to invasive life-extending procedures and don’t want to die in a hospital.
But he thinks too many patients are directed into hospice too soon and stay there too long. Hospice agencies, the majority of which are corporate, don’t have a problem with that because the money is better than ever. Medicare pays roughly $18 billion a year to hospice agencies.
Not everyone agrees about when a dying patient should begin hospice care, and the general standard is that it’s for those with less than six months to live, but Dorio thinks it should be reserved for the very end of life.
“Some patients are on hospice for two or three years,” said Dorio, a Harlem native and L.A. High School alum who told me he took his inspiration for human service from his father, a social worker. “I’ve never had a patient on hospice for over seven days, because I know what active dying is.”
He said signs that death is near include diminished speaking ability, low blood pressure, changing skin color and cooling extremities.
Dorio’s rounds Friday included three patients he took me to meet. Our first stop was at the home of 50-year-old John Woods, a long-haul truck driver who had a massive stroke at age 35 and still suffers from partial paralysis and a host of other maladies. Dorio described Woods as the kind of patient who often gets pushed into hospice care.
“We’re lucky we had Dr. Dorio,” said Lynn Beltran, Woods’ mother and primary caregiver. She said Dorio has helped advocate for her son, who still has reasons to live and wants to get better and isn’t ready for hospice.
Our second stop was at a hospital, where we met with a woman whose husband, a former school administrator, was near death. She told us the hospital had tried to discharge him, but she resisted. She said they are able to cover his medical bills partly because they bought long-term insurance many years ago.
Next on our list of house calls was Stan Sharpe and his wife, Lana, a Hollywood makeup and hair stylist. Stan had a stroke and has heart trouble, a thyroid problem and multiple other issues. They don’t think he’s near the end, but Lana said Stan was hustled out of the hospital on his last visit without the meds and medical equipment he needs , and the health insurance company was trying to push him into palliative care.
“They say you’re out of here, no matter what, and they really don’t care what your condition is,” Dorio said before giving Stan a checkup. “Yeah, there are aspects of medicine where the bottom line is a consideration. But it’s important that the patient comes first.”
Dorio pointed out that in each of our three visits, the patient was male, the advocate was female, and both of them had to devote themselves to an exhausting crusade — fighting for the care they thought was appropriate. We pay more than any other country for healthcare, Dorio said, but we don’t always get the best service, and the system can be insanely complicated.
As for hospice, Dorio’s prescription filled two pages.
Far more government oversight.
Investigations into conflicts of interest and finder’s fees for doctors who refer patients to specific hospice agencies.
More crowd-sourced evaluations of hospice agencies.
Stricter requirements that hospice agencies are properly staffed, so patients don’t get neglected.
I’m all in on the last one, in particular. In my experience with both parents, and in the stories emailed me by readers, the hospice nurses and aides get high marks, but there aren’t enough of them to handle the rapidly expanding number of cases, and patients are suffering unnecessarily.
If you’d like to read the Doctor’s Diary, you can find all of Dorio’s posts at scvphysicianreport.com. When I asked how his mother was doing, he said she’s pretty good. She had to give up driving, but she lives alone without assistance at 97, and it’s been five long years since she was designated for hospice care.