A patient arrives for her dialysis appointment. It is the third time she’s been to the dialysis center this week, just like every week prior for the past few years. Her nurse care manager talks with her about her grandchildren, the weather. She tells the nurse care manager she’s tired of doing dialysis. The nurse care manager says, in an understanding way, that she knows how tedious and difficult dialysis can be but the patient insists. No, it’s not that it’s inconvenient or annoying. I don’t want to do it anymore.
When the goal of treatment is to improve the health of the patient, discussions and plans around end of life can sometimes seem counterintuitive. But death is just as much a part of the medical sphere as life-saving treatments. A growing group of Partners clinicians are urging their colleagues to be more open and comfortable with the topic of dying. At hospitals and clinics across the Partners system, clinicians are piloting new ways of supporting patients through end of life transitions, whether it’s developing new ways of care delivery, being better prepared to identify patients that have reached that stage in their life, or knowing how to have the most productive conversation about preparing and planning for the end of life.
Julia Gallagher, MD, Medical Director for the Home-Based Palliative Care program at Massachusetts General Hospital (MGH), wants to bridge the gap for patients with advanced, complex illness who may not be eligible to enroll in hospice due to a more prolonged prognosis or who may not be ready to enroll in hospice despite qualifying for the service. This population is identified through the integrated care management program (iCMP) which focuses on chronically ill patients with multiple health issues, such as diabetes, heart failure, COPD and dementia through patients’ primary care practices.
The problem with the way the current health care system operates is that it’s organized into discrete groups. If you’re a patient with an advanced chronic illness, you’re either siloed into traditional clinic-based care or into hospice. In reality, organizing patients into those two groups leads to gaps in care. Patients not yet eligible for hospice may find it increasingly difficult to get into the clinic or have a number of hospitalizations and stays in rehabilitation centers without much improvement in their overall health and well-being.
The Home-Based Palliative Care (HBPC) team helps to bridge this gap by providing pain and symptom management to patients in their homes and by developing complex home care plans in collaboration with patients’ primary care physicians and specialists. When hospice becomes the best care plan for the patient, the HBPC clinicians support patients and their families through the transition. The staff on the ground consists of Dr. Gallagher, two Nurse Practitioners, and a Social Worker, who all make home visits in the greater Boston area.
“As patients become sicker and have increasingly frequent encounters with the health care system, their care becomes more fragmented and there is often no unifying conversation about what’s most important to them and how we can care for them if their wish is to be cared for at home,” says Dr. Gallagher. “We’re thinking about how we can help care for patients at home if that’s where they want to remain before they become hospice appropriate.”
Ideally, the team helps to manage and support patients for a year to two years before they transition to hospice, but sometimes patients are referred to the team when they are much closer to end of life and the team has to help them transition to hospice much more quickly than expected. “We’re referred a wide spectrum of patients,” says Dr. Gallagher. “We don’t really know what to expect until we walk through their door.”
The program has grown in leaps and bounds since its start at Massachusetts General Hospital in 2014. In 2016 they had 1,125 visits and saw 180 new consults with an upward trend in new patient referrals. The program has also expanded to include select primary care practices at Brigham and Women’s Hospital (BWH) with the hope of expanding to the entire Partners system.
In addition to the Home-Based Palliative Care Program, the BWH is also piloting another approach called the Serious Illness Care Program that aims to empower frontline clinicians to have discussions about patients’ goals, fears, and what matters most to them in living with a serious illness. A group of clinicians from BWH and Dana-Farber Cancer Institute launched the program using an approach they helped develop with Atul Gawande, MD and Susan Block, MD, but tailored it for implementation in a primary care setting.
Often, serious illness training is relegated to specialists like oncologists and cardiologists who regularly treat patients transitioning to end of life care. But for patients with complex, chronic illnesses, their primary care doctors or nurse care managers may have a longer standing relationship with the patient and may sometimes be in a better place to broach this topic with them and their families.
“They’re comfortable with us,” says Barbara Healy, RN, an iCMP nurse care manager at BWH. “They’ll tell us things they won’t bring up to anyone else, like their kids or their doctors. I’ve had patients tell me they want to stop treatment. And it’s like okay, let’s have a conversation about that.”
One aspect of the tool and trainings is to identify high-risk patients nearing end of life who would benefit most from serious illness conversations. Then, using the conversation guide, clinicians initiate conversations using best practices in serious illness communication to understand the patient’s goals and preferences. The final step is to document these discussions in a retrievable location in the patient’s electronic health record (EHR) so that all providers can access the patient’s care goals. The care team also has integrated triggered reminders, sending lists of appropriate patients identified by the iCMP program, and ongoing coaching to the care teams.
“It’s really a whole systematic intervention,” says Becky Cunningham, MD, Medical Director of the BWH iCMP program as well as a primary care doctor at the Phyllis Jen Center. “We started in a few departments and have now expanded to all of the Brigham primary care practices. And now we’re increasing our reach even more.”
The next advancement in the program is to address patients in a situation similar to those treated by the Home Based Palliative Care Program—chronically ill patients who cycle in and out of the hospital without being able to make it to primary care appointments.
“We thought that if they’re going to the hospital a lot and if they’re going earlier before they die, let’s see if we can get to them there and talk to them about what is important,” says Josh Lakin, MD, a palliative care specialist at both BWH and Dana Farber Cancer Institute and a lead palliative care consultant for the BWH iCMP team. “It’s another way to try and improve early communication.”
Greater understanding of end of life care, both by patients and providers, may also benefit the health care system. Preliminary data collected by the Center for Population Health shows that patients who participated in the Serious Illness conversation pilot had a smaller increase in total medical expenses at the time of their passing than the control group who did not participate in the serious illness conversation. While both groups saw a rise in medical expenses, the group enrolled in the serious illness conversation cost on average $2,598 less for each month they remained alive.
“It’s one of the few times that the care that people want may actually be more efficient and less costly, and that’s not always true in medicine,” says Dr. Cunningham.
But in order to decrease overall health care costs associated with end of life and improve the quality of life for these patients, clinicians have to be comfortable broaching the subject with them early on. The work happening at Partners institutions is hopefully the first step in shifting this culture, and emphasizing the importance of end of life care. “The champions for this work and the roots and seeds for it all are already out there,” says Dr. Lakin. “Our goal is to provide tools to the champions and let the culture change itself.”