Palliative care teams help help terminally ill patients live as good a life as possible until the end.
Rebecca Roberts had never heard of palliative care two years ago when her boyfriend, "Papa" Joe Funes, begain suffering multiple organ failure. But by the end of Papa Joe's life, she was devoted to the medical process.
Dr. Matthew Katics, director of palliative medicine services at Salinas Valley Memorial Hospital, defines palliative care as a specialty that provides patients total care while they are enduring an often fatal illness. By definition, palliative care can treat non-terminal patients, but the lion's share of care is done during the patients final weeks or months of life.
"Total care cuts to the heart of palliative care," Katics said. "We move away from treating a disease and toward treating a person. Palliative care is not synonymous with hospice."
Palliative care is often confused with hospice, but they are not the same. Hospice allows terminally ill patients to return home to spend their final days in familiar surroundings and made comfortable. The goal of palliative medicine is to improve the quality of life for the patient, terminal or not. Palliative care is a multi-pronged approach, using physicians, psychosocial workers to treat mood, nurses skilled in this type of care, and members of the clergy and other spiritual leaders.
"Palliative care is a medical specialty directed at those with life-limiting chronic disease," said Dr. John Hausdorff, medical director of the palliative care team at the Community Hospital of the Monterey Peninsula. "It focuses on providing relief from the symptoms, pain, and distress of illness, whatever the diagnosis."
Katics used an example of a patient entering the hospital for a hip replacement. The patient has suffered excruciating pain for many years and is now addicted to opiates. After the surgery, a palliative care team – the doctor, nurses and a psychosocial care worker – will help the patient explore alternative treatments for long-term pain management to get them to the point of functional recovery.
Or a patient could come into the hospital with difficulty breathing and suffering from chronic obstructive pulmonary diseases. The emergency room stabalized the patient's breathing, but what about when he goes home? Then what? The palliative care team will review his medicines, talk with him, and even evaluate him for any mood disorders. COPD is a fatal disease that can take years to kill.
"We want you living as good as you can, feeling as good as you can, for the time you have," Katics said.
Papa Joe begins a journey
It was the summer of 1994 when Roberts received a call informing her that her boyfriend was en route in an ambulance from King City to Salinas with a massive head injury. When she arrived at SVMH, she didn't recognize him, she said. His head was massively swollen and his skin was the color of slate.
Thursday afternoon Roberts and Katics sat under the shade in a patio at the hospital, catching each other up on their lives since Papa Joe died two years ago.
That 1994 summer, Papa Joe was found on the ground at the base of a grandstand in a park in King City. One side of his head was horribly malformed from an impact – from what, exactly, was never established. It could have been the result of an altercation with what Roberts calls "Joe's acquaintances." But a neurosurgeon told Roberts that the pattern and severity of the injury was not consistent with a blow from a club or cane. The damage was far greater.
Nearly 20 years later, a good many in King City harbor far more nefarious believes – that Papa Joe might have been beaten, then climbed to the top of the stands to lick his wounds. It was there that Joe, who had minor run-ins with King City Police before, was tossed off the grandstand where he sustained the violent injuries to his head. Other, less dramatic, scenarios feed the rumor mill in the farming and ranching community in the deep southern part of Monterey County.
Initially no police report was written up, but when SVMH required one to proceed with treatment, Roberts said the response was, "You mean that son of a bitch is still alive?" A broadly worded report was written, where it remains an open case because it is now a homicide.
Meanwhile Joe remained in a coma, and doctors were telling Roberts he didn't have a chance of survival. But with Roberts fighting every effort to disconnect him from life support, Papa Joe continued to live. First minor moves, a hand squeeze, then one day he opened his eyes and tried to talk. A doctor came in removed the breathing tube and Joe talked with a raspy, tired voice. He also answered all the doctor's questions, who then determined he was alert and oriented. He went home, extremely disabled.
A fall re-injured the original head trauma, and the result was stroke-like symptoms. Back in the hospital he began to retain water and his kidneys began to fail. Joe was now being treated by the palliative care team and they stabilized him. That was when Roberts met Katics for the first time. Her experience with doctors was not good. In the early days she had face-to-face confrontations with a doctor who was determined to unplug his live support. Katics and his team were different.
"He's one of a kind," Roberts said. "After all those years of posturing and the sighs aimed at me, all my distrust melted away."
Katics' approach to Papa Joe
Often the gravely ill patient is the only one doctors must contend with. When families are in the mix, each member sometimes has wildly different views of the best care for their sick loved one. The facts that all must keep in mind as they approach their last days is that medical science is allowing people to live longer, but not better. Diseases that would have killed a generation ago can be contained for years. But what does the patient want?
"Is giving them more days better or just prolonging the suffering?" Katics asked. "People are complex and they have a desire to know."
When there is family involved, there are emotions and confusion. There are many paths a patient can elect to follow, but Katics and his team ensure none of the decisions are made in ignorance.
"Each path is OK as long as you are doing it with your eyes open," he said. "Part of my job is to get to clarity for the patient and family."
The sooner a patient teams with a palliative care unit the better the outcome, whatever that may be. The ideal time would be at the point of diagnosis of a serious disease, said Christine Short, director of Nursing Support Services and coordinator of the palliative medicine service at CHOMP.
"If palliative care starts at an early stage, such as upon a serious diagnosis, a thoughtful conversation can occur with the patient about what matters most and is most important to them," she said. "Our priority is to respect patients' wishes and interests, and to make sure they understand their situation well enough to make informed decisions."
In one case at CHOMP, a woman with long-term gastrointestinal issues had several surgeries and had difficulty managing ongoing pain and nausea. After dealing with the immediate medical issues, the palliative care team met with her and her husband.
The team asked her to think about the future – what interventions she wanted and who would speak for her if she couldn't. A social worker – part of any palliative care team – stepped in and helped the couple with an advanced healthcare directive, which provides instructions to medical teams for future care. Both SVMH and CHOMP palliative care teams strongly advise everyone to pick up an advanced directive from their primary physician, fill it out, have their doctor keep a copy, have the hospital file another copy, and keep a copy for you.
"Giving the couple the advanced directive prompted them to talk with their friends to arrive at clear directions to any future physician caring for them," CHOMP's Hausdorff said.
Papa Joe's goodbye
When Roberts decided there was nothing more doctors could do for her love, she made the decision to take him home. But she was surprised that there was one more thing Katics could do for them. Joe's breathing was distressed and he needed a breathing bag in the ambulance on the way home. But paramedics weren't allowed to use an ambu bag, as they are called, per ambulance company policy.
"So Dr. Katics jumped in the back of the ambulance and bagged Joe all the way home," Roberts said. "And then at home, he helped me set up all the supplies I would need to care for Joe."
His two daughters, his mother, and his grand-kids sat around his bed. He looked at Roberts with raised eyebrows in that "I'm sorry" expression, closed his eyes and died.
On Thursday, Roberts and Katics sat on the patio, at times holding hands as they talked about Joe.
Fighting back tears, Roberts told Katics that she loved Papa Joe. "We were talking and had a whole plan to move away, start a new life, and then two days later, boom, that happened."
Katics took that in for a moment, squeezed her hand and softly told her: You advocated for him, and you fought the fight that was right for him."