Series of 19 online videos address Palliative Care issues

Jan. 26—CANTON — Project Compassion began with conversations over coffee after Mass between a doctor and a retired priest.

Seventy-one percent of U.S. adults have never heard of palliative care. More than 12 million adults are living with a serious illness now and that number is growing exponentially, according to a press release.

To help address this need, Project Compassion was developed by Father Charles Vavonese and Dr. Paul Fiacco thanks to a $500,000 grant from the Mother Cabrini Health Foundation.

The Project Compassion website offers 19 videos produced by former TV Anchor Dan Cummings, which are aimed at helping seriously ill patients and their loved ones attain physical, spiritual, social, and emotional healing and assist them with end-of-life decisions.

"Dr. Fiacco and I have been friends for like 20 years," Vavonese said.

"When I retired from the Diocese, I used to be the assistant superintendent of schools. I taught at Lemoyne. I taught at Syracuse University. I've taught at a number of other places part-time. Basically, I was a teacher before I went into the seminary, so I love teaching.

"When I retired in 2017, Doc and I began to have coffee after Mass. In the process, we began to realize that we had some parallel interests. He was interested in primary palliative care, which is the care that's given to patients once they get a diagnosis that has no cure. It could be like COPD or something like that up until the time they could go into hospice. So that could be a long time.

"The primary care doc actually works to limit the burdens of the disease. They can't cure it, but they treat symptoms. Along with that, I was interested in the spiritual anchor. I was also interested in the moral medical angle."

One of Vavonese's master theses was on the continuation of life and moral theology.

"I was interested in that, and he was interested in palliative care," he said.

"We began giving talks and people responded very well. From that point, we printed a number of articles. People said you need to get it out more. So we applied to the Mother Cabrini Health Foundation, and we received a grant of $500,000 to develop a website with videos that would do two things: provide resources for palliative patients, their families and also to provide pastoral care training course for people who go to visit the sick to help make them a little bit more efficient and be able to have them, again, be able to meet the needs, the social, the emotional, the spiritual needs of the people."

The project's goal is to reach out to patients diagnosed with serious illness, but before they enter Hospice Care, their families/caregivers, lay ministers, health care providers and the general public to present information to them in an accessible format.

Some of the topics addressed in the online videos include: — What is Palliative care? — Catholic End-of-Life Moral Medical Issues — Spirituality for the End-of Life — Guiding a family through the grieving process — Inspirational videos to help patients facing a terminal diagnosis — Pastoral care training videos which help address patients' emotional and spiritual needs — Videos from a physician's perspective of Primary Palliative Care — The Legal and Practical end of planning for your last wishes such as advance directives

"There's one section, don't tell the patient that you know that they're going to be alright," Vavonese said.

"Because you don't know that. Many people think they are helping the patient, but 'sorry that you're through this' is a much better response. So helping them with just basic counseling skills and the like."

The duo enlisted Cummings, a retired Syracuse Channel 9 news anchor.

"He became our producer," Vavonese said.

"We hired him to produce the videos, and we produced 19 videos for our website. We were able in November to be able to go live with the website. The response has been amazing, absolutely amazing. I think within the first month we had 3,000 visitors.

"Having worked in education, I loved it. That was my passion and still is, and that's why I'm developing these videos. I'm teaching in a different format."

The Need

As reported by the NIH, 12 million adults and 400,000 children in the United States live with a serious illness such as a cardiac condition, chronic pulmonary disease, dementia, neurological condition, an end-state disease, or advanced illness. This number is expected to reach 78 million by 2035.

Palliative care helps improve quality of life for these individuals and their family, regardless of diagnosis. Although roughly 71% of hospitals in the nation (80% in New York) offer inpatient palliative care services, access to in-home, ambulatory/in-home palliative care is extremely limited, though this changing and increasingly primary palliative care is being delivered in community settings.

Resources

On the Compassion website, patients and their family members can find information related to everything from advance directives, health care proxies, and living wills to pain management, palliative care, quality of life issues and more.

Pastoral Care Training

The website offers a video-based Pastoral Care Training Program for those individuals who visit the sick on behalf of their parish. The five-part pastoral care training program educates the viewer on what is pastoral care, who we visit, how to have conversations with someone facing a serious illness, including preparing the sick for the Sacraments, and how to support a patient's family members as they cope with their loved one's illness.

"When I came to health care, it really made me feel alive. I really felt the power of God working to kind of heal people. Even though they may be terminal, there's a healing that takes place," Vavonese said.

A video on grieving as been very well received.

"People don't know how to grieve, and there probably aren't too many places where people can go," he said.

"While the site is heavily Catholic, there are lessons would be appropriate for other denominations. We have a non-denominational minister that wrote the sermon for us, a scriptural exploration of hope. The grieving is non-denominational. The first two of the videos are non-denominational. The third one deals with the Sacraments.

"But, all in all there are things for families. There are things for patients. There are things for people who are going to minister to them, and also for the professionals."

There are videos from a physician's perspective of primary palliative care.

"Our medical folks are geared on healing. and all of a sudden, if they can't heal the person they think it ruins their enthusiasm. What the Doc tries to say is you are healing them in their last part of life. Pain management is a big piece, perhaps social or counseling the spiritual.

"They may even need physical therapy. So all those things are a very powerful way for the medical community to be involved, and we just wanted to get that across," Vavonese said.

Email: rcaudell@pressrepublican.com

Twitter@RobinCaudell