Over the Memorial Day weekend, the School of Medicine in partnership with the VA Palo Alto Health Care System released this thought-provoking and touching documentary about Korean War veteran-turned palliative care advocate Jim Cooper. The short film was spearheaded by VJ Periyakoil, MD, director of palliative care education and training at Stanford, and chronicles Cooper's experiences with advanced lung disease and palliative care. In the following Q&A, Periyakoil discusses the circumstances that led Cooper to become a health-care advocate and how the film will be used to further educate the public about palliative care services.
What was the catalyst for producing this film?
Mr. Cooper was referred to me by the pulmonary service. He had been diagnosed with advanced lung disease and was told that he had about six months to live. He came to my clinic in a wheel chair and extremely short of breath to the point that he was unable to complete full sentences without gasping for air. He also had moderate to severe pain in his chest, plus depression. After assessment, I felt that his breathlessness, pain and other symptoms could be treated and, with good palliative care, he would not only feel better but live for more than six months. Mr. Cooper was skeptical about my prognostication as he was suffering due to all his disease-related symptoms and so just did not believe me. So I jokingly told him that I was going to have to film him just to prove to him that he was going to still be alive in six months. What started out as a joke between us became his passion.
Why was it important for him to educate the public about the palliative care?
The more he benefited from being in my clinic, and the better he felt, the more committed he became to spreading the word about palliative care. He was deeply surprised he had never heard about this sub-specialty of medicine. He knew many friends who he felt would benefit from palliative care but was again surprised to find that there are not very many palliative care specialists. It bothered him that millions of Americans were dying without access to this type of treatment program. So he made it his life mission to increase awareness about palliative care. He asked me to do a video journal of his life all the way to the end to demystify the dying process and show people what it felt like to live with a terminal illness.
Why is there a need to better educate the public about palliative care?
Palliative care is often confused with hospice care and both are thought to be synonymous with death panels. The reality is so far removed. Palliative care is specialized medical care focused on relief of suffering and support for best possible quality of life for anyone with any type or stage of serious illness. Palliative care specialists relieve suffering by treating the person's pain and other distressing symptoms such as breathlessness, nausea, fatigue, loss of appetite, anxiety and depression. They also provide support to family members of seriously ill patients.
I went into medicine and palliative care to help patients live longer and feel better. We are all about prolonging life and promoting best possible quality of life. We just do not want to subject patients to suffering often resulting from ineffective medical technological interventions and to prolong the dying process. Mr. Cooper saw a lot of his friends subjected to such intrusive, painful and ineffective interventions. So he took up the cause to increase awareness about palliative care.
What surprised you while filming this production?
We have a hard time making patients understand and not fear palliative care. Mr. Cooper understood it better than most doctors I know. Once it became known that he was doing the film, many veterans called him and he would counsel for hours about palliative care and symptom management. One caller confided in Mr. Cooper that he was going to end his life. Mr. Cooper spent two whole hours on the phone with this veteran. In the end, he agreed not to take his own life and to seek help instead.
Mr. Cooper was generous about sharing his life with us and insisted on being filmed as he was dying. Personally, I was concerned about this being too intrusive, but he insisted. So we filmed all the way to the end as well as his funeral. He knew going in that he would not be around to see the final film, but this did not bother him.
How will this film be used to increase public awareness about palliative care?
The film will be used in teaching Stanford medical students, residents and fellows about this area of health care. It has also been made available to a larger audience through the School of Medicine YouTube channel as a resource for patients with serious illnesses looking for more effective treatment options.