Although palliative care has been around for decades, many people have either never heard of it before or couldn’t really say what it is. To be honest, many of the medical providers that I work with have a hard time explaining just what palliative care means for their patients. We in the business describe palliative care as an extra level of support for patients dealing with serious or life-threatening illness. But that’s not very helpful either. Perhaps the story of Joe, a fictional but typical patient, will better illustrate just what it is that we do.
Joe had been very healthy most of his 63 years. He owns a construction company and until recently enjoyed working on the job site alongside his crew. He and his wife of 35 years, Millie, live in a small home about 40 miles outside of our small town in the Colorado mountains. His oldest son, John, lives in the area and works with his dad as a supervisor, and the younger son, Colt, lives in New York. Although he had never smoked a day in his life, Joe was diagnosed with stage IV lung cancer over a year ago.
Since his diagnosis, Joe’s life has been increasingly consumed by chemotherapy infusions, doctor’s visits, tests, images, and more frequent emergency room visits and hospital stays. He has been on several courses of chemotherapy without completely stopping the cancer but with terrible side effects. He has tried to continue working, but has had to rely on John more and more to keep the business on track. Joe is weak and tired, sick from the medicines, and the pain in his body is unrelenting.
It’s Tuesday afternoon, and Millie brings Joe in to the emergency department once again because the pain is unbearable. In a moment of candor, Joe admits to the doctor that he would rather quit chemotherapy and die than continue to feel this way. He knows the cancer is growing despite the chemotherapy, but believes there is other choice but to take the medicines. Joe feels stuck living a life of discomfort with no voice and no control over what happens with him.
Joe is clearly suffering. It would be easy for the oncologist to suggest a new chemo drug or the emergency physician to increase the pain medicines, but there is more to Joe’s suffering than physical symptoms. Our palliative care team, a group made up of a specialized provider (myself), a chaplain, a social worker, and a nurse, is called in to talk with Joe and his family about their goals of care; that is, what do they want the rest of his life to look like.
By the end of our conversation, we have discovered that both Joe and his family are not troubled by the prospect of Joe’s death but are very troubled by the poor quality of his life. They agree that they would rather focus on comfort than aggressive treatment in his remaining time. We arrange a meeting with the oncologist to discuss stopping the chemotherapy. I adjust Joe’s pain medications to better fit with his goal of comfort above function.
During the conversation, our team discovered that much of Joe’s emotional suffering stems from unresolved feelings toward his youngest son and the need for reconciliation before he dies. The social worker and chaplain agree to return later that day to talk about how Joe can re-connect with his son. We also ensure that Joe and Millie have the emotional support they need at home and offer resources to help with finances since Joe cannot work.
We help the family with advance care planning, which is a set of legal documents that specifies what treatments Joe would want or not want and who may make medical decisions in the event that Joe cannot speak for himself. And finally, we refer Joe to Hospice, a specialized palliative care service focused on support at the end of a patient’s life.
Palliative care is the physical, emotional, social, and spiritual support of patients while they are dealing with a serious illness, whether they are undergoing treatment or not. We work alongside the other physicians to care for the whole patient and their family. We have no agenda other than to discover the patient’s core values and ensure that the treatment offered best matches those values. Hospice is a special type of palliative care that can be offered to a patient approaching the end of life and has decided to forgo further treatment of their disease. Both palliative care and hospice exist to maximize comfort and minimize suffering and distress. In medicine, we must never become so focused on treating disease that we forget to truly care for people.
Matt Stinson, MSPC, MPAS, PA-C is a physician assistant in oncology and palliative care at the Calaway Young Cancer Center at Valley View Hospital in Glenwood Springs, Colorado. He completed a master’s degree in palliative care at the University of Colorado, and he designed and implemented an inpatient palliative care program at his organization. He has been a medical volunteer at Epic Experience for several years under the camp name “Radiator Springs”.