“Bob’s” voice was different on the phone. “John, I think something is really wrong this time.” As a member of Commonwealth Care Alliance (CCA), a nonprofit care delivery system in Massachusetts serving Medicare and Medicaid’s most costly and vulnerable populations, Bob had been my patient for the last seven years. During that time we faced many serious health issues together, but even during the tough times Bob was upbeat, reassuring me of his recovery. Injured in a motor vehicle accident in his late teens, he had lived with a severe spinal cord injury for 35 years. He knew his body and the difference between when to worry and when to be calm.
This time, Bob was worried. For the past 48 hours he had been urinating blood. Like other people with spinal cord injuries, he was at an increased risk of bladder cancer due to the catheter connected to his neurogenic bladder. We arranged for him to see an urologist for an immediate cystoscopy and biopsy, and the results were unsurprising: Bob would need surgery for bladder cancer.
The surgery did not go well. Bob’s tumors were large and surgically complex, making it impossible to remove the bladder. Chemotherapy and radiation treatment were the only remaining treatment options. I consulted with the urologic surgeon and the oncologist: sadly, the treatments we could offer did not hold significant hope for cure. They did risk significant decline in his quality of life. After reviewing his options, Bob decided not to pursue any aggressive treatment, but instead focus on quality of life. Above all, it was his wish to live out his final days at home, surrounded by his family.
The cost, both in monetary and quality of life terms, for cancer treatment that does not improve morbidity or mortality is high. A recent study by Dr. Ronald Chen reported that among patients younger than 65 who died from metastatic cancers, approximately 75% received aggressive care including chemotherapy, radiotherapy, ER visits, ICU and inpatient admissions in the last month of life. The vast majority died in the hospital. This traditional care model impacts everyone involved, not just the patient. Multiple studies have shown better outcomes for families when time-appropriate palliative and end-of-life care is provided.
At CCA, supporting patients in these kinds of informed health care decisions is the driving mission of our model of care. For Bob, this meant that CCA’s unique programs—including our primary care-based palliative care and end of life program, and our innovative Acute Community Care program that provides acute-care interventions in the setting of a patient’s home—allowed us to align our care with his wish to remain at home. Bob did not have to make a binary choice between signing on for hospice (and transitioning to a new set of providers) or continuing to receive aggressive oncology treatment within the traditional model of care. Instead, the team that had cared for him the past seven years continued its home-based model without interruption – tailoring the intensity interventions in real-time under Bob’s guidance and direction.
From the time of Bob’s decision not to pursue aggressive oncology treatment to his death three months later, he required just one ER visit. His total healthcare costs halved as he approached the end of life – the opposite of the typical trend for patients with advanced end-stage disease. And, most importantly, his quality of life greatly improved, as he spent his final days comfortably at home, surrounded by loved ones, receiving intensive clinical care from the team he trusted every step of the way.
Too often in the traditional health care system, the decisions patients are presented with are overly dichotomous. Patients are frequently given aggressive treatment—often without full disclosure of the benefits and risks—and then transferred (often abruptly) to end-of-life care when there is “nothing more we can do.” This paradigm is far too costly both monetarily and in human suffering. CCA’s system of integrated, home-based care has the ability to seamlessly blend appropriate aggressive medical treatments with palliative care focused on maximizing quality-of-life, driven by fully-informed patients and their families participating in shared decision-making with expert clinical teams. This model offers a new way to help patients like Bob choose wisely – and, critically, it ensures that the care structure delivers on its promises to patients right until the very end. For Bob and so many others like him, the result has been an improved quality of life and more efficient delivery of care.
John Loughnane, MD is the Chief of Innovation and Medical Director for Life Choices Palliative Care Program at Commonwealth Care Alliance. He was also a winner of the 2016 Costs Of Care Essay Contest.