By Lori Earnshaw, MD
Fully conscious while on a fentanyl drip and with an endotracheal tube down his throat, the 70-something emaciated man raised his index finger to wipe tears from his tired eyes. “I just hope to make it home,” he wrote on the dry-erase board. As sick as he was, he would not compromise his literary prowess to write less than a complete sentence.
He was alone. His sister lived out of town, and my palliative care team and the ICU nurse stood in silence as he came to terms with the possibility that he might die if he discontinued ventilatory support in order to avoid long-term ventilation through a tracheostomy at an LTAC facility. Against all odds, he survived his hospital stay and was discharged home with hospice care through Hosparus Health, which provided his oxygen by nasal cannula, morphine for breathlessness, interdisciplinary team support, and a 24/7 call center with a nurse on the other end of the line.
He thrived on hospice services, so much so that he had to be discharged six months later because he had gained weight, his symptoms improved, and he was able to resume his writing. He had not been to the ED or hospital once during his hospice enrollment. Despite the hospice team’s efforts to provide continuity of care after discharge, nothing could replicate the services he received from hospice. He had three ED visits in the next year because of COPD exacerbation, and he became very depressed and suffered from panic attacks. He had difficulty leaving home to attend his multiple physician appointments, and he was confused by numerous prescriptions, often in duplicate or with conflicting indications.
What my patient needed was home-based palliative care, but it would be three years before Louisville would have such a program and before I would meet him again. In my role with Hosparus Health, I visited him in his home, reminiscent of the interiors I saw as a child in the 1970s Architectural Digest. His height took me by surprise, as well as seeing him donned in a button-down shirt and corduroy pants. He was relieved to see a familiar face. He told me that he heard a commercial about new programs at Hosparus Health on the local public radio station, and he called to see if we might be able to help again. He had a positive experience with hospice, and he sadly hoped that he might have a prognosis of less than six months so he could benefit from services again. He had not met the prognostic criteria when evaluated by the hospice admission nurse, but I was able to provide a palliative care consultation.
Fortunately, we enrolled him in our home-based palliative care program, which is a team-based approach that serves as an extra layer of support to his existing care providers. His goals were to stay at home, feel less depressed and anxious, and avoid another ED visit.
Community-based palliative care (CPC) refers to palliative care provided outside of the hospital, and evidence has shown that CPC programs improve patient outcomes and quality of life, reduce symptom burden, increase survival and decrease healthcare utilization.
In the United States, CPC has its origins in the hospice movement, which was legitimized in 1982 by the Medicare Hospice Benefit. The Medicare Hospice Benefit (MHB) created per diem (“bundled”) payments for hospices and mandated the type of care to be provided.
The hospice nurse must visit every two weeks at minimum, and the nurse provides case management for the patient. She/he works with an interdisciplinary team of professionals to provide holistic patient care that is overseen by a physician.
Hospice becomes the medical home for a patient and his/her family, who are considered the unit of care. Care is delivered wherever the patient calls home. The per diem payment from Medicare pays for all medications, staff, and medical equipment related to the terminal diagnosis.
Six Month Barrier
Unfortunately, the MHB also mandates that patients are only eligible if they have an expected prognosis of less than six months. This requirement has resulted in significant barriers to hospice care, with the median length of stay in hospices like Hosparus Health hovering around two weeks.
In addition, the hospice model of care does not assimilate well into the acute care setting: Medicare Part A pays either hospice OR acute inpatient care for patients hospitalized for their hospice diagnosis. As a result, patients in the hospital were not consistently receiving quality palliative care, a reality that was highlighted by the SUPPORT trial in 1995, which showed that the majority of terminally ill patients died in severe pain and without their wishes being honored.
Through the grassroots advocacy of providers and the persistence of the Center to Advance Palliative Care (CAPC), the palliative care movement began sweeping U.S. hospitals in the 1990s and 2000s. Academic medical centers were the first adopters, with 100 percent of AAMC-affiliated hospitals having a palliative care program.
I helped start an inpatient palliative care program at University of Louisville Hospital in 2006 and an outpatient palliative care clinic in 2011. Through that experience, I realized that a key component of care was missing, especially as we worked to meet the needs of cancer patients who wanted to continue chemotherapy and other interventions that were often cost-prohibitive to hospice at home.
Population health initiatives highlighted the benefits of managing patients with palliative needs across the continuum of care, outside of the hospital setting. In 2016, I joined Hosparus Health to help start a home-based palliative care program.
Out of Pocket Expenses
During the year my patient spent in our home-based palliative care program, he only had one hospitalization. He received 24/7 phone support and routine monthly visits by a nurse and social worker, as well as CNA visits twice per week to help him with grooming and meal preparation. I was able to see him as a palliative care consultant and manage his shortness of breath, anxiety and depression. I collaborated with his primary care provider to ensure he had continuity of care. A trained palliative care volunteer helped him compile his latest book. He was ultimately referred to the hospice program because of a presumed six month or less prognosis, and he was re-enrolled.
Thankfully, my patient had the resources to pay out of pocket for home-based palliative care, a service that is currently not universally provided by insurers. For this innovation to make a significant impact, payors must recognize and meet the need for palliative care at home.
Our healthcare system must improve the quality of care for chronically ill and medically complex patients who do not receive hospice. The American Academy of Hospice and Palliative Medicine and the Coalition to Transform Advanced Care have worked tirelessly to develop proposals that address the needs of seriously ill patients. These have been presented to the Physician-Focused Payment Model Technical Advisory Committee (P-TAC), and the Department of Health and Human Services will hopefully approve a model soon. Until then, we will rely on community innovators to grow community-based palliative care in the hope of improving the care of seriously ill patients and their families.
-Lori Earnshaw, MD, is a senior hospice and palliative medicine physician at Hosparus Health.