Beyond a Cure, There is Care

Dear Sean Parker…

Thank you for joining Phil and Penny Knight ($500 Million) and Daniel Ludwig ($540 Million) with you contribution yesterday in the battle against cancer, a force of nature. Your focus on immunotherapy and an innovative limited “open-source” knowledge sharing model for six of the most funded cancer research centers on our planet, UCLA, UCSF, Stanford, Memorial Sloan-Kettering, MD Anderson, and the University of Pennsylvania. This kind of formidable force of human activity will no doubt make a difference in the effort to push back, control and even occasionally cure cancer. As I mentioned to Mr. and Mrs. Knight a few years back, there is a hidden irony worth considering.

Far from these dazzling research centers, in the homes of people like you and me, people with cancer, and everything else on the current list of lethal conditions, complete their lives in the absence of simple basic care. Despite the advances in cancer treatment and its spectacular cost and social impact, people die.

Using data published by the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program, it turns out that in 1975 approximately 199 people per 100,000 died from invasive cancer of all types. Almost 35 years later, approximately 173 people per 100,000 died as a result of their cancer. This modest 13 percent reduction in annual death rate was realized during the most dynamic period of progress in the history of medicine. Early screening and diagnosis in breast and colorectal cancer as well as cures in some childhood cancer syndromes represent the bulk of this improvement in the annual death rate. This improvement is something important that our society can be proud of, but the irony is that just about the same number of people die after their journey with cancer as died more than three decades ago. This is true despite the many billions of dollars spent on research and development of cancer directed treatments, and the many trillions of dollars in health care expenditures during this time of explosive innovation. There is no question that we can also celebrate that people with cancer today live longer and, often, with preserved quality of life as a result of our commitment to cancer-directed treatment technology.

Thus, it is a real triumph that people are living longer and perhaps better with ultimately fatal cancer. However, when they do die of their disease, how well are we serving them? At the time hospice was established in the United States in the 1970s, cancer patients made up the vast majority of hospice admissions, and the relatively predictable natural history of late-stage malignancy is formalized in the institutional structures established with the Medicare hospice benefit in 1983. Currently, only about a third of cancer patients ultimately enroll in hospice, and half of them will die in less than two weeks.

Imagine the challenge of understanding the nature of each unique person and his or her family, gaining effective control of dynamically progressing symptoms, and supporting the completion of a life in two weeks or less. All that and more, while at the same time meeting the documentation and regulatory standards that have nurses, social workers and chaplains spending more time entering data into databases than in direct presence with people and their families. Two-thirds of cancer patients today die without the support of hospice. That is a tragic deficiency of simple human caring for cancer patients and their families in the context of exploding expenditures on the search for cure.

Over the past 15 years or so, palliative medicine has emerged as an academic discipline positioned at the side of our colleagues in medical, radiation and surgical oncology. While oncologists’ attention is appropriately focused on optimal strategic application of cancer-directed technologies to provide longevity to cancer patients, the palliative medicine practitioner and the palliative care team apply expertise in the management of symptoms, as well as providing care and planning critical to cancer patients when things are going well and when they are not.

Traditionally, in the Western medical model, death has been seen as a failure. New collaborative efforts of the American Society for Clinical Oncology and the American Academy of Hospice and Palliative Medicine promise integration of these two disciplines, while the Commission on Cancer of the American College of Surgeons has dramatically revised guidelines to require palliative care services in accredited cancer programs. Now in the 21st century, our systems of care are beginning to reflect an understanding of human death as a human experience rather than a medical failure.

There are enormous unmet needs across the full spectrum of cancer care beyond the focus on cure and control. There are unanswered questions in the areas of optimal management of common and devastating symptoms, as well as critical public policy and resource allocation dilemmas. We also desperately need to increase the output of trained palliative medicine specialists, as well as training all health care professionals in the simple forms of kindness that inspire meaningful healing as people and their families face death.

So Sean, I would like to humbly request that you dedicate a simple 1 percent (or more) of the $250 Million gift to research and training that supports the simple human care of the large majority of cancer patients who will ultimately die of their disease. I am sure you’ll agree that they deserve the best care possible when cure is beyond their reach.

Michael D. Fratkin, MD
Father, Husband, Mortal
Founder of ResolutionCare
Palliative Care Physician