Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.
I knew the in-patient unit would be busy on Christmas so I signed on to take an extra shift. There were already five patients when I got there and a sixth was expected. Around noon, Holly Gold was rolled into the hospice accompanied by two of her daughters. One of them was fighting back tears and unable to respond when I said hello. The other introduced herself as Joanne, who told me she held power of attorney for her mother’s healthcare and that their mother needed pain relief immediately.
“She is suffering from heart failure and has been comfortable at home,” Joanne said. Her words came out quickly, probably powered by pent up anxiety. “Last night she took a bad turn and hasn’t stopped moaning and crying. She needs to be admitted. Is the doctor here?” Her eyes darted around as she looked for a medical professional. I don’t think my volunteer badge offered the kind of comfort she needed.
Many family members panic when they first arrive at the hospice because patients usually come here in some sort of physical distress. About half are already receiving hospice care at home so their family members are familiar with how it works, but Mrs. Gold and her daughters were new to hospice. The doctor had warned me that they were very concerned about their beloved mother. “The family is very close,” she had said, and she asked me to convey a calming confidence when they arrived.
“The doctor called right before you walked in,” I said to Joanne. “She wanted me to tell you she will be here within 30 minutes. In the meanwhile, we are going to get your mother settled. The nurses are in with her right now. I promise you, she’s in good hands.”
Joanne and her sister both thanked me, but I could tell Joanne was still nervous by the way she fired out questions. “Don’t we need two doctors to verify that my mother has less than six months to live? Do we have to wait until that happens to start treatment? Do you need a copy of my mother’s Advance Medical Directive? I have it here.” When she stopped to take a deep breath, I jumped in. I pointed toward the sofas with an arm outstretched to indicate we were going to walk in that direction.
“The doctor has already admitted your mother. I will take a copy of whatever paperwork you have, and someone from the hospice team will be here shortly to go through the rest of the admission process,” I said as I sat down on one of the sofas. Joanne and her sister followed my lead.
As we talked, several people walked into the hospice and came over to where we were sitting. Joanne introduced them as two more sisters and the patient’s nine grandchildren. She explained they were a very close family and had traveled from all over the States to be together over the winter holiday break. I went back to my desk to photocopy Joanna’s papers while she led a family meeting in the living room area. She explained that her mother left very specific instructions about the kind of medical treatments she did and did not want. Everyone nodded along as though they already knew about Mrs. Gold’s directive. Some of the grandchildren asked questions. Others offered comfort to their emotional family members. In spite of their grief, they were kind to each other the way I wish all of our patients’ families could be, the way I hope my brothers and I will be when our turn comes to deal with our parents.
Because most patients come to our hospice in crisis–that is the purpose our in-patient unit serves–they and their family members are often unprepared for the reality of end-of-life care. Whatever family dynamic exists continues to play out in the hospice. My friend Daisy says ‘As we are in one thing, we are in all things.’ I would agree and also add that crisis brings out who we really are, not who we hope we are or who we pretend to be. Which brings me back to me and my family.
After my friend Leslie died–in hospice, in crisis–I sat down with my parents and asked them if they had any plans for end-of-life care. We had never discussed the topic as a family, and I wanted to make sure they received the kind of treatment they wanted. More importantly, I wanted to make sure that my three brothers and I were not left to fight about the kind of healthcare our parents would or should receive if they were not able to speak for themselves. I assured my parents, who raised four strong-willed, very different children, that we would be together but we needed them to do us and themselves a big favor by taking the burden of such enormous decisions out of our hands. They understood because they have witnessed our many disagreements over the years.
I now have the same paperwork for my parents that Joanne Gold had for her mother. The forms articulate my parents wishes and put me in charge of carrying out those wishes if my parents can not. My brothers and I might not be as close as the Gold children and grandchildren, but we will be united on our parents’ side when the time comes for us to say goodbye to them.