The Circle of Life

No one likes to talk about the end of a loved one's life, but at some point it is a conversation every family has to have. Subjects like writing a will, drawing up advanced directives about how or if the loved one wants to be kept alive by medical technologies, and deciding where they want to be buried need to be discussed. The type of care given will also have to be talked about. Our family eventually settled on a philosophy of care known as hospice. Hospice care stresses relieving pain caused from a disease, but it does not emphasize curing the disease. This type of care helps to ease the transition "from here to there" in as comfortable and as pain free a manner as possible, while also helping to ensure a better quality of life for the patient and family.

In Jonny's case, I couldn't help but think of the tremendous benefit hospice would have been to both Jonny and his mother. From lending a hand when his dressings needed changing to giving Jonny some needed pain relief, the comfort care provided by this service may have given both of them some added assistance as well as piece of mind. But every family is different, and hospice is not for everyone. The important thing for everyone involved is to keep talking, to express feelings, to bridge that gap between living and dying, and to complete the circle of life.

What I thought was so wonderful about Jonny and his family was how they communicated with each other. Too often the loved ones involved avoid the subject of dying and create a greater distance between themselves and the person who is terminally ill. Many feel that talking about death is a form of giving up. But this is so untrue! In our minds we are thinking we are protecting our loved one, but in reality, we are pushing them further away into a lonely field of emotional isolation. In Jonny's case, he forced the issue. He wanted to talk about it. As a result, he opened the door for his loved ones and friends to broach that hard-to-discuss topic and brought them all closer together. He truly was not alone with these thoughts.

Jonny Made Us All Better

Jonny's lifelong medical struggle with dystrophic epidermolysis bullosa, or EB as it is known, was a severe case of suffering. The severity of his physical illness and the extreme limitations it put on his daily routines were immense, not only for himself, but for his mother and other family member caregivers. Yet in the storm of Jonny's health issues, a burning flame of hope ignited along with a wonderful sense of curiosity and his spirit became full of wisdom and appreciation for what the world provided around him. He lived the best way he could, given the human body that carried him in this world. Jonny believed there was so much more to come after his time on this Earth. What he wanted was for people to know he would be OK, and that while we are here, we should pursue our passions, live our dreams, nourish our senses, appreciate the simple pleasures, be kind to others and always, always, take time to see the humor in everyday life. Thank you, Jonny.

Robert Danoff, D.O., M.S., is a family physician. He is program director of the Family Practice Residency at Frankford Hospitals, Jefferson Health System, Philadelphia, Pa. He is also a medical correspondent for CN8, The Comcast Network, a frequent contributer to DiscoveryHealth.com and a contributing writer to The New York Times. In addition, Dr. Danoff writes a weekly medical column for the Bucks Courier Times, Bucks County, Pa.