A Patient Advocate’s Perspective on the 2014 Quality Care and Palliative Care in Oncology Symposia

November 6, 2014
Carole Seigel

Carole Seigel is a founding member of the Patient and Family Advisory Council at the Massachusetts General Hospital Cancer Center and is a member of their Quality and Safety Committee. She received a Conquer Cancer Foundation Patient Advocate Scholarship to attend both the 2014 Quality Care Symposium and the Palliative Care in Oncology Symposium held in October in Boston.

I was catapulted into the world of cancer when my husband was diagnosed with pancreatic cancer at age 58. He lived for 27 months with a quality of life worth living thanks to his courage and the quality care and palliative support he received at Massachusetts General Hospital Cancer Center. It is critical to note that the quality of supportive care varies widely across our country from comprehensive cancer centers to community hospitals to public and private institutions. I have personally witnessed how every symptom chips away at having a great day when there are too few left and how no symptom is too minor to warrant treatment. For the past 15 years, I have attempted to speak for those whose cancer is too acute or too deadly to allow them to speak for themselves.  

The Quality Care Symposium followed two tracks. The first dealt primarily with the collection and analysis of data related to safety to translate the findings into actionable initiatives that would positively impact patient safety. Beginning about 30 years ago, the definition of safety began to include quality, in terms of recognizing cancer related symptoms. This second track focused on quality of life and end of life issues, which are key interests for me. 

There are disturbing measurements describing end-of-life care in this country, such as death occurring in an intensive care unit (ICU) or acute care hospital, radiation in the last 30 days of life, hospice care less than three days from death, chemotherapy in the last 14 days of life, and emergency room visits in the final 30 days. One-third to one-half of cancer patients report that they did not get adequate advice or help for the top three symptoms: pain, fatigue, or emotional distress. There was universal agreement, at least among those present at the symposium, that these measurements are unacceptable, and they define low-value care, which is estimated to cost $750 billion annually in the United States for treatment that is not evidenced-based medicine and is unwanted by the patient.

The Palliative Care in Oncology Symposium further developed the concepts of patient-centered care and personalized medicine. Key topics discussed were changing the fee-for-service reimbursement model, which encourages overutilization; developing clinical pathways to ensure both symptom management and health utility; focusing on personalized care as evidenced by the NIH Patient-Centered Outcomes Research Institute; encouraging end-of-life discussions that honor advance directives; developing and adopting quality markers to measure outcomes; and defining palliative care more broadly to provide support and symptom management from the time of diagnosis until death, with hospice and morphine having a small but important place in this continuum.

Now that palliative medicine is a separate discipline, there is a question of how the specialty will be part of cancer care.  Will oncology providers manage supportive care with palliative specialist back-up, or will a team approach develop? Will care be fragmented? Will the science of toxicity be better served if palliative care specialists see cancer patients during the entire trajectory of the illness rather than in extreme cases? This is an interesting crossroad in cancer care, and patient advocates need to weigh in to the discussions by relating their experiences, one by one. 

Attending an American Society of Clinical Oncology (ASCO) symposium is educational and inspirational. It is humbling to be surrounded by health care providers who are united in their goal to provide the best possible care for their patients and witness their determination to explore new paths, yet hear them admit that at times they have fallen short. This experience energizes me to continue the advocacy and political work I do.