Literature Review

Home … where we all want to be The Journal; Dr. Sarah Phillips, Medical Director Hospice of the Panhandle; 1/12/25 Two days before Christmas, I arrived at the home of a patient who had been recently admitted to Hospice services. ... [Story of the patient being on a ventilator in a hospital.] This courageous and self-determined woman expressed the desire to be free from pain, suffering, and the complications and progression of her disease. Knowing that the ventilator was life-sustaining and essentially breathing for her, she made the decision to stop it. To ensure her comfort during discontinuation of the ventilator, the hospice team was present before, during, and after the procedure. Medications were used to ease shortness of breath, pain, and anxiety. ... “It’s a Wonderful Life” was playing on the TV, the Christmas tree was lit. I looked over and see the daughter wiping away her mother’s tears. Each reassured the other that everything will be OK and that they are at peace with this decision. As the medications took effect, the patient drifted off to sleep. The ventilator was stopped. Next, something happens that I will never forget. The daughter leans in and whispers to the patient, “Mom, the ventilator is off now, you are back in total control. This was profound to me on many levels. It certainly spoke to the power and importance of autonomy, the ability to make independent decisions that are aligned with one’s values and goals. ... Despite working in end-of-life care for over a decade, I still have these moments of being overwhelmed by the human spirit.

31 Photos and stories that show how expensive it is to die in America

'You will NEVER be forgotten': 26-year-old Savannah mom in hospice care has died ABC WJCL-22 News, Savannah, GA; by Graham Cawthon; 12/13/24 A young Savannah mother who entered hospice care earlier this month has died. WJCL began following the story of 26-year-old Sara Long last year. Long was diagnosed with a rare kidney disease at the age of 13. Six years later, her mother donated a kidney to her. But the new organ failed.“We were expecting to have more time, you know," Sara told WJCL earlier this month. "I was just hoping to make it through the holidays, honestly." ... "I would rather have 26 really good years full of adventure and full of meaning and full of love and just the most beautiful people and I'm so glad that I got that instead of 100 mediocre ones," she added.On Friday, Sara's husband Justin confirmed that she had passed away. "December 12, 2024 at 10:20pm Sara Long passed away. I held her in my arms and told her I loved her as she took her last breath. Her kind and loving nature continues through our daughter Riley and me as she has shown me that men can be calm and loving. She has shown me that I can be the greatest dad and has shown everyone around her what true love and kindness is. I'm glad she lived a great 26 years instead of 100 mediocre ones. Thank you, Sara for giving me the absolute best 7 years of my life and the most beautiful daughter. You will NEVER be forgotten. I love you." Editor's note: We posted Sara's powerful video and quote in our newsletter on 12/6/24. Click here for her profound, inspirational video.

Softly into the night - An end of life love story Billings Gazette, Billings, MT; by Joseph Scheller; 11/29/24 This is a picture story about life — of joys and sadness, of challenges and struggles and sacrifice. It’s a story about dementia and caregiving. It’s a story about souls and spirit and deepening devotion. Mostly, though, this is a love story. It begins with Wayne Roberts, a big and burley guy with a Harley but as personable and approachable as they come. ... It was simple, really. When he wasn’t at work, he was caring for his wife, Lynne, who had onsets of dementia. When he was at work, he was thinking of her. I wasn’t looking for a story about caregiving but there was a warmth and openness about Wayne and Lynne that tugged me to tell one through my camera. ... [With] their comfort and trust, I became part of their world, in a way, and was able to photograph most anything. They were mostly simple scenes of daily living and caring, some sensitive, some not, and as dementia stole more and more of Lynne’s mind, her world got smaller and Wayne was her only gateway to it. He paved it with tenderness. ... [Click on the title's link to see photos and read this inspirational story.] 

If my dying daughter could face her mortality, why couldn’t the rest of us? DNYUZ, appearing first in The New York Times; Ms. Wildman; 11/25/24 The first week of March 2022, I flew to Miami with my 13-year-old daughter, Orli; her 8-year-old sister, Hana; and my partner, Ian. We were, by all appearances, healthy. Robust, even. In reality, we were at the end of a reprieve. Orli’s liver cancer had by then been assaulted by two years of treatments — chemotherapy, a liver transplant, more chemotherapy, seven surgeries. Now new metastases lit up a corner of one lung on scans, asymptomatic but foreboding. We asked her medical team if we might show her a bit of the world before more procedures. Our oncologist balked. Hence, this brief weekend away. When we arrived at the beach Orli ran directly to the water, then came back and stretched out on a lounge chair. She turned to me and asked, “What if this is the best I ever feel again?” Three hundred and seventy-six days later, she was dead. In the time since she left us, I have thought often of Orli’s question. All that spring, Orli asked, pointedly, why did we think a cure was still possible, that cancer would not continue to return? Left unspoken: Was she going to die from her disease? It was a conversation she wanted to have. And yet what we found over the wild course of her illness was that such conversations are often discouraged, in the doctor’s office and outside it. ... [Click on the title's link to continue reading this profound story.]Editor's note: While families are gathered for Thanksgiving, many health changes will be observed since this time last Thanksgiving, with countless unknowns to unfold until Thanksgiving next year. Tune into the wide scope of conversations that people do want to have, don't want to have, and--perhaps--that your own family needs to have, with grace and care for all.

'My charity wedding dress brought me closer to Mum' BBC, Manchester, United Kingdom; 11/16/24 Like many brides, when Jo Johnson started planning her wedding, she wanted her mother to be an integral part of the day. But as June Kiely had died nine years earlier, she faced a puzzle as to how to bring her into the ceremony, until she realised there was a way of both feeling closer to her mum and honouring those who cared for her in her final days. June Kiely died at the St Ann's Hospice in Little Hulton, Salford, in 2015, and in the run up to getting married, Jo found herself at the charity's bridal and vintage shop in Stockport. The 38-year-old said it was a "magic moment" as she knew instantly it was the place where she would find the perfect dress. Jo said getting her dress from the shop was "a really special way to include my mum but also to give back to the hospice for everything they'd done." She said the hospice had given her mum "incredible care" and as soon as she walked into the shop, she knew she was "doing the right thing."

Balancing work, life and whatever is in between McKnights Senior Living; guest column by Rebekah Bray, LNHA; 11/11/24 Defining our work and lives as separate entities implies that one should not affect the other. For balance, opposing forces must be equal and not influence each other. In actuality, our careers and our home lives have been begrudgingly unifying for years.  ... Late night and weekend hours somehow have become a badge of honor that demonstrates a commitment to the senior living community or long-term care facility, with the thinking that no one else will possibly be able to achieve it. Endless hours are not sustainable and, simultaneously, a baseline has been developed that tireless commitment is the bare minimum. ... [People] in leadership positions in healthcare seldom are given the luxury to unplug, mentally or physically, due to the endless cycle of problems, including staffing, changes to regulations, revenue and day-to-day operations. Many leaders consider it a sacrifice that comes with the job of leadership. ... Editor's note: Work-life balance continues to be a trend in reasons for retention, unionization, strikes, and more. More significantly--in the midst of your important work as leader--this is your life. This is your time to create and navigate relationships, work, and more. Tapping into your passion for end-of-life care, what will be your joys and regrets when you are receiving palliative and hospice care? What kinds of grief care will your family need after your death?

Celebrating the 238 We Honor Veterans Hospice programs!

Transitional Bridges offers compassionate alternative to plastic belongings bagsABC 8 News, Richmond, VA; by EIN Presswire; 4/30/24Transitional Bridges, a San Diego-based nonprofit focused on inspiring compassion and improving end-of-life care through art, has created Transitional Belongings Bags, a compassionate and eco-friendly alternative to the plastic bags hospitals use to hand over belongings to loved ones after a patient has died. The concept was first introduced 17 years ago by the Irish Hospice Foundation Hospice Friendly Hospitals Program to promote dignity and sensitivity when returning a loved one’s possessions to bereaved family and friends. ... Lorene Morris, the founder and president of Transitional Bridges, became inspired to bring the movement to the U.S. after her mother, an artist, died unexpectedly from postoperative complications. When the family was handed their mother's possessions in two large, clear plastic bags, Morris recalls, “I felt like the whole world could see those intimate items. It was just so wrong.”

Poem: I knew you had been sick for quite a while. I had no idea you were walking your last mile.The Andalusia Star News, by Vickie C. Wacaster, "a patient and hospice advocate for Aveanna Hospice"; 3/14/24. This poem is at the end of an article, "COLUMN: Hospice helps make most of all moments."I knew you had been sick for quite a while. I had no idea you were walking your last mile. Had I known your time was so near, Despite my fear, I would have talked more, touched more, and loved more. I asked about your care, your prognosis, your life, Why couldn’t they tell me? I was your wife. Or was I in denial? Did someone try to tell me? Did I refuse to hear? Could I not see? Did I refuse to accept? Your diagnosis and prognosis, did I reject? Was it because of unbelief? That death snatched you as a thief.We could have made the most of the time you had left, If only we had not been afraid of what we felt.