Case manager Christie DeMarco with Arthur Miller, one of her Caring Way patients

Americans with a serious illness are not getting the end of life care they want. According to a 2017 report by the Henry Kaiser Family Foundation, nearly 50 percent rated it as “fair” or “poor.” And, while four out of five Americans say they want to die at home – surrounded by loved ones – a majority die in the hospital, connected to life-support systems in intensive care units.

Why the disconnect? A lack of timely communication.

Now, Penn Medicine is leading the way to change that scenario, providing a holistic approach to caring for seriously ill patients by training providers to better understand their patients’ values and beliefs and ensuring that these wishes are respected throughout the continuum of care.

Serious Illness Conversation Guide

A 2008 study in the Journal of the American Medical Association (JAMA) showed that patients with a life-threatening illness who had not talked with their physician about their life and treatment goals, received more aggressive medical care in their final week of life, which was associated with worse patient quality of life near death. And caregivers also had a worse quality of life, with an increased risk of depression.

Yet, these conversations don’t happen as often as they should. “Conversations between doctors and patients with serious illnesses are often about technologies, treatments, and trials, not ‘what are your goals if your health gets worse?’” said Nina O’Connor, MD, director of Palliative Care. “If you don’t ask questions like these, there’s no way to align the care plan with their values.”

And advanced directives – while important – “are not specific enough and not in the context of what’s happening now with that illness,” O’Connor said. “Most people fill them out when they’re healthy. That might change when you have cancer… and they’re no substitute for a conversation between patient and doctor.”

Physicians often worry about the emotional toll that these conversations can add, said Anjana Ranganathan, MD, of Medicine. “We sometimes defer these conversations because of a concern that they will upset patients or take away their hope, but we are finding that bringing up questions about goals and values in a normalized way actually reduce anxieties. ”

Last fall, Penn Medicine brought on board a new outpatient initiative to help providers improve their comfort in approaching these difficult conversations, through the use of a step-by-step Serious Illness Conversation Guide. “It helps providers assess what patients know… and want to know,” O’Connor said. “What are the goals if health gets worse?”

The three-hour training educates providers through demonstrations and role playing. “This is a key part,” O’Connor said. “It’s not just a lecture, which doesn’t change behavior. It gives providers a chance to practice with an actor.” And post-course follow-ups keep the conversations on radar screens, making sure physicians are having them and removing any barriers to making them a part of the patient’s care plan.

The training also addresses the timing of these conversations. Often, Ranganathan said, our conversations about goals and values occur too late in the disease process, when the patient is already in an advanced stage and unable to engage in this important conversation. The program helps physicians judge when to have the conversation with a single question: Would you be surprised if your patient passed away in the coming year? “If not, you should engage the patient in a conversation,” she said. “When you have these conversations with the goal of preparing for when things get more difficult – rather than at the end of life – you get more patient engagement and you are better able to prioritize patient goals and values.”

Penn providers who took the course said they felt more comfortable with – and were more likely to have – the conversations, Ranganathan said. One of the key points many left with was the “need to start these conversations sooner.” When asked about their reactions to the conversations, patients “felt closer to clinicians and relieved and happy about having them,” Ranganathan said. “These are important in the patient/provider relationship.” And, understanding a patient’s goals and values “decreases healthcare utilization because patients don’t want to be in the ICU or receiving chemo in an advanced stage,” said O’Connor.

Right now, the training focuses on oncology specialists throughout Penn Medicine but “we’re studying the outcomes and based on that, we’ll decide about expanding to other specialties, specifically those who care for a large number of patients with serious illness, such as heart failure cardiologists,” O’Connor said.

Ranganathan is encouraged by the feedback. “We have all seen what happens when we don’t have these conversations. It can be devastating when patients and families have no mental or emotional preparation,” she said.

Continuing the Conversation … and the Patient-Centered Care

Serious conversations with patients about values and wishes may begin with the oncologist but, thanks to Caring Way, they don’t end there. They – along with patient-centered care – continue in their homes.

Caring Way, a part of Penn Medicine Home Care and Hospice Services, brings palliative care to patients at home, keeping them comfortable, safe, and, when possible, out of the hospital. Contrary to what some think, palliative care is not just for patients in hospice care; it can also help those still seeking curative treatment. “It’s an extra layer of support for patients facing serious illness,” said Katherine Major, MSN, Nursing director of Caring Way. “We’re helping the patient get the right level of care at the right time.”

Caring Way teams include a case manager, social worker, chaplain, nurse practitioner, and physician. “We are a team of connectors, doing our role to provide excellent care, largely by connecting patients to the care they need,” said social worker Julia Schott, MSS, LCSW. During weekly meetings, the team discusses patients, barriers to care and potential solutions. “It helps people to think differently than just on their own,” Major said. “It can be isolating when it’s just the patient and RN. These meetings provide a forum for the nurse to discuss complex situations in a nonjudgmental setting.”

Caring Way case managers, such as Amanda Dougherty, BSN, visit patients in their homes, providing services that might otherwise send them to the hospital, for example, administering fluids. “I like meeting one-on-one with the patient, with no call bells or other distractions,” she said, adding that she often stays with a patient beyond providing clinical care. “We’re just talking. They’ll show me their wedding pictures, from 60 years ago. And they’re as excited as I am to look at the photos.”

She also uses this time as a “window of opportunity” to better understand what matters most to her patients as they face serious illness. “I’ll ask, ‘if things get worse, what’s important to you?’” and uses the “Our Care Wishes” tool to help patients create an advance directive, talking it through step by step.

To help guide in navigating goals-of-care conversations, all Caring Way staff complete the “Conversation Ready” course. “They become adept at conversations with patients and families in very difficult times,” said Major. “It’s the same conversations – and the same message – physicians are being taught. We work collaboratively.”

Not surprisingly, case managers often establish strong bonds with both the patient and family. “We become part of their family. I know their grandchildren’s names, their pet names, what they like,” said Christie DeMarco, BSN, also a Caring Way case manager. “I like the intimacy and making life easier for these families.”

These close feelings are mutual. “Christie is like one of my daughters. She’s so gentle and kind and very loving. I can call and ask her anything,” said Bonnie Miller, the wife of one of her patients.

The impact of Caring Way’s holistic approach has been significant. Since FY15, the 30-day unplanned readmission rates have decreased by nearly 30 percent, and nearly 90 percent of patients gave the agency a rating of 9 out of 10! “We are improving care for serious illness, rallying around these patients with earlier conversations, interdisciplinary approaches, and special home care programs,” O’Connor said. Penn Wissahickon Hospice and Caring Way was also selected as a Circle of Life Award Winner for 2018 by American Hospital Association. The Award recognizes programs and organizations that can serve as models or inspiration for other providers. According to the announcement the award committee was “particularly impressed with how home care, home-based palliative care, and hospice are cordinated within the organization structure, providing continuity of care to patients.

“This is not end of life care,” Dougherty said. “It’s a new beginning. We are doing what’s important to them.”

A new program called Palliative Connect facilitates coordination between palliative care specialists and a patient’s primary clinical care team using predictive data technology.  Read more at PennMedicine.org/news-blog.

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