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."
With mounting evidence that cancer research and biomedical discovery are slowing even as a 45% increase in cancer cases is projected by 2030, the National Patient Advocate Foundation (NPAF) – a national non-profit organization providing the patient’s voice in improving access to quality cancer care – just released a blueprint to accelerate the delivery of promising new treatments to patients and launched a new grassroots movement called Project Innovation to drive action.
Issued as a call to action, the new white paper – Securing the Future of Innovation in Cancer Treatment – is the result of consultation with biomedical researchers, medical innovators, patient advocates, clinicians and policymakers and offers a roadmap for addressing the pervasive obstacles slowing the pace of cancer discovery. Among the barriers cited are a nearly 20% drop in government-funded basic research since 2010 and a steady decline in venture capital investment in biotechnology since 2007.
Also impeding progress are logistical, bureaucratic, institutional and regulatory obstacles that add years to scientific discovery and drug development, such as added steps and inefficiencies in the clinical trials process, duplicative and conflicting standards, auditing mandates, increasing regulatory requirements and delays in review decisions. As a result, it takes nine or more years from discovery to approval for a new cancer therapy compared to an average time of two years for HIV drugs. Further, because drug development is an uncertain process, a 2010 Tufts University study puts the cost of developing one innovative cancer drug at upwards of $1 billion.
“This report represents a wakeup call for all Americans and is intended to spark a national movement to make cancer innovation a national priority,” said Nancy Davenport-Ennis, NPAF’s founder and chairman. “Cancer kills 1,600 Americans every day and this number will only increase in the years ahead unless we commit as a nation to hasten the pace of medical discovery. It is time to put cancer innovation on the national agenda and press for solutions that will save lives instead of continuing a one-sided conversation on the cost of treatment.”
Project Innovation to spearhead a national dialogue on cancer innovation
To turn these findings into practice, NPAF will spearhead Project Innovation, a social activation effort to involve patients, their family members and local citizens in speaking out about the importance of accelerating cancer innovation. Utilizing the online hub – www.projectinnovation.org – digital advertising and multiple information channels, Project Innovation will tap the energy and ideas of cancer patients, advocates, healthcare professionals, biomedical researchers, medical innovators, payers, policymakers and 21st century thinkers on ways to move cancer discovery forward. Plans call for hosting regional town halls, workshops and advocacy forums across the country; scheduling meetings with federal and state legislators and regulators; and arming interested citizens and patient advocate volunteers nationwide to advocate for cancer innovation in their communities.
Project Innovation is a collaboration of leaders from national cancer advocacy organizations, providers, biomedical research institutions, the business community and industry to put cancer innovation on the policy agenda.
Three pillars of innovation
Through Project Innovation, NPAF’s agenda-setting report will be distributed widely to patient advocates, healthcare professionals, biomedical researchers, medical innovators, payers, and policymakers with the goal of elevating cancer innovation as a national priority and advancing policy solutions addressing three pillars of innovation. Specifically, NPAF’s action agenda calls for action in the following areas:
Expand the science of innovation by reducing logistical obstacles
Improve the value of innovation by bolstering funding opportunities
Enhance the delivery of innovation through improved communication and coordination between providers and patients
The Chesterton Health and Emergency Center offers average wait times of 15 minutes or less and has maintained a patient satisfaction rate in the 99 percentile since it opened in 2012, according to medical director, David Hunnius, DO.
The center, which is open 24/7 and is the area’s only freestanding emergency facility, also assures patients will receive primary care from board-certified emergency medicine physicians.
“There’s no type of emergency we can’t handle; this is a full-service department, staffed by experienced, board-certified physicians. We offer everything a hospital-based emergency department does,” said Hunnius, who, since 2009, also has been medical director of Franciscan St. Anthony Health – Michigan City, parent of the Chesterton center.
“We provide compassionate, highly skilled medical care, which results in very satisfied patients, as evidenced by our patient satisfaction scores,” Hunnius said. Travis Thatcher-Curtis, Franciscan St. Anthony Health Emergency Department manager, who also oversees the Chesterton center, said the 15-minute average figure is not a gimmick, but is based on 2013 tracking board data. Assessing patients sooner results in faster diagnoses, treatment and ultimately, satisfaction, he added.
“Besides the high patient satisfaction scores recorded since we opened, the Chesterton ED was also a 2013 Press Ganey Guardian of Excellence Award winner, which is presented to organizations that achieve satisfaction scores in the 95 percentile or greater over a designated period of time. Our patients are receiving the definitive level of care they need in a timely manner and are receiving it from a care team with a high level of competency with regards to emergency medicine.”
Thatcher-Curtis said being able to more quickly complete the treatment process “gives patients back time in their day because of the efficiency with which we can provide services.”
The center also includes an onsite laboratory, high-field open MRI, 64-slice CT, ultrasound, mammography and general x-ray services, along with primary care and specialty physician practices.
HHS recently released the final Exchange and Insurance Market Standards for 2015 and Beyond rule, affecting several provisions within the Affordable Care Act.
The rule finalizes most provisions as proposed, including policies relating to health insurance discontinuation and renewal, quality reporting and enrollee satisfaction surveys, the Small Business Health Options Program (SHOP), and adjustments to risk corridors and the medical loss ratio (MLR) requirements in light of transitional policies and technical issues associated with 2014 open enrollment. The rule also finalizes stronger standards for Navigators and other consumer assistance entities.
Consistent with the proposed rule, issuers will see some benefit from the changes to the MLR provisions and premium stabilization programs to recognize the uncertainty created by the transitional policies and technical issues of 2014. In addition, state regulators were granted slightly more flexibility to request a delay in employee choice for 2015, which should help stabilize risk pools in the small group market and encourage more issuers to participate in the SHOP. However, issuers will face greater burden from the finalized requirement for plans to provide a 24-hour expedited exceptions process for coverage of non-formulary drugs under exigent circumstances.
The requirement for plans to expedite the process to cover a non-formulary drug under certain circumstances will help ensure that consumers have timely access to certain prescription drugs.
HHS intends to release technical guidance on some of these provisions, including the process by which it will make sequestered funds from the reinsurance and risk adjustment programs available to issuers in FY 2016. HHS has already released technical guidance on the proposed methodology for calculating quality ratings, which HHS intends to finalize shortly. Next year, HHS intends to release guidance on Enrollee Satisfaction Survey (ESS) vendors and details regarding the display of rating information and ESS results in marketing materials.
