Literature Review

End-of-life conversations: ‘When they open the door, you have to go in’ Oncology Nursing News; by Pattie Jakel, MN, RN, AOCN; 3/13/25Oncology nurses have a unique relationship with patients that allows for difficult but essential end-of-life conversations, says expert Patricia Jakel, MN, RN, AOCN. Jakel, one of the editors in chief of Oncology Nursing News, emphasized that following up with patients and ascertaining what answers and support they need comes with the close bonds that oncology nurses form with patients with cancer. ... [Jakel describes:] We play a really important role. And sometimes patients ask us difficult questions, and we have to be prepared for it. I remember a lovely young patient I had, she had 2 little girls, and she was very sick. And things weren’t going well for her in the hospital, and she just—she looked up at me and she said, "Am I dying today?" And I thought, "She’s opening the door. She needs to have this conversation.” And I said, “It’s not going to be today, but I think it’s going to be soon.” And she kind of chuckled, because her sister was at the bedside, and she said to her sister, “I need my makeup done. I want my makeup on today, if today’s not the day.” And that took us to a whole conversation about what dying would look like for her.Editor's note: Read and share this significant, sensitive video/article from its source, Oncology Nursing News. What communication education and support do you provide for your nurses? Explore this similar article from Oncology Nursing News, "APPs, Oncologists Work Together for End-of-Life Discussions," 11/2/24.

The staging of 'The Story of My Life' at Asbury Memorial filled with serendipitous moments Savannah Morning News, Savannah, GA; by Amy Paige Condon; 3/6/25 ... [Ray] Ellis, a retired music and drama teacher who works now as a caregiver, and fellow church member Dottie Kluttz, a retired hospice nurse, were hanging decorations in Asbury Memorial’s Social Hall. Ellis shared how his dream of producing “The Story of My Life” was back on his mind … A former hospice nurse, Kluttz founded Savannah Hospice’s Story Keeping program in 2001 as a way for people near the end of their lives to share the story of their lives. …  [Click on the title’s link to read the serendipitous, synergistic encounters that unfolded, resulting in shows March 28, 29, 30.] [Upon underwriting for production costs,] Ellis proposed that ticket sales for the musical could serve as a fundraiser for Savannah Hospice’s Story Keeping program and the Michael J. Fox Foundation for Parkinson’s Research—a nonprofit near and dear to Ellis, who was diagnosed about three years ago with the progressive brain disease that causes tremors, stiffness and balance problems. … Stage and film actor Mark Rand, who was diagnosed with Parkinson’s around the same time as Ellis, agreed to portray Thomas to Ellis’s Alvin—even after Rand thought he would never perform again. …

Charges dismissed against chef accused of trying to kill his Monterey county mother KSBW Action News-8, Monterey, CA; by Felix Cortez; 2/28/25 A popular San Francisco area chef who was arrested along with his sister and charged with trying to kill their mother more than two years ago has had attempted murder charges dismissed against him. “In over 30 years of practice, this was one of the saddest cases I have ever seen and one of the most incompetent investigations by the Monterey County Sheriff’s Department that I have ever seen,” said Juliet Peck, the attorney for James Stolich. ... The mother was terminally ill and lived on a ranch off Highway 68 outside Salinas. “James’ mother’s only wish was to die at home without pain, surrounded by her daughter, son, and pets,” Peck said. But that never happened; Tinker died about a week later in a hospice facility, never to see her children again, because an emergency protective order obtained by the sheriff’s office prevented the children from visiting their dying mother. ... According to court documents, the daughter, Whitney, was the “agent designated to make all health care decisions for her mother,” which included administering medication to help alleviate her mother’s pain. ...The original criminal complaint alleging attempted murder charges said Whitney or a co-conspirator “crushed up pills with a mallet.” A close friend of Tinker was willing to testify that Whitney had no intent to kill her mother but was simply following her mother’s “directive to provide effective and sufficient palliative care even if it hastened her death.”Editor's note: This case raises numerous issues, including but not limited to community education (including law enforcement), Advance Directives, patient and caregiver education and support, MAiD (Medical Aid in Dying) or the End Of Life Option Act (EOLOA) in California, ethics, and the dying process (note that "the mother died about a week later in a hospice facility). 

Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study BMC Palliative Care - Part of Springer Nature, Open Acces; by Annica Lagerin, Christina Melin-Johansson, Bodil Holmberg, Tove Godskesen, Elin Hjorth, Lena Junehag, Carina Lundh Hagelin, Anneli Ozanne, Johan Sundelöf & Camilla Udo; 2/19/25... This study aimed to gain an in-depth understanding of healthcare professionals’ (HCPs) experiences of existential conversations with patients with PC needs and their next-of-kin by generating a theoretical model. ... To emphasize the importance of ethical competence for quality patient care, particularly in PC, a combination of care ethics, clinical proficiency, relational skills and effective communication is essential. ... The potential obstacles we identified that require attention include the need for managers ... to support HCPs by allowing time for reflection, developing new routines, and providing education focused on existential conversations in PC. However, the main contribution of this study is the description of the interdisciplinary strategies HCPs used to establish meaningful, existential conversations by maintaining presence, as this paved the way for trusting conversations with patients and next-of-kin. Editor's note: Pair this with today's article "Why being trustworthy is a leadership hack that drives success."

Aging for Amateurs: Valentine's Day brings out the poetry of aging in love The Post and Courier, Charleston, SC ; by Bert Keller; 2/10/2 The week of Valentine’s Day breathes love. Many elders have lived through love’s changing seasons consciously, experiencing what an alive, evolving, hazardous and soul-satisfying thing love is. ... In every long love, the emotional part undergoes a change as the stages of life are lived through. Marriage begins like a bonfire that melts and merges us: our togetherness wants no separation. Then it eases into a practical fire for cooking meals and washing dishes — those years of getting up with the baby, balancing the books, taking out the garbage. ... And then in old age ... love is less a feeling alongside other feelings, and more a shared sense of being with the other. My wife calls it “with-ness.” ... What was transactional in an earlier stage has become grace. After retirement I volunteered to do chaplaincy with a local hospice. I recall a moment sitting at the bedside of a 93-year-old man whose memory was erased by Alzheimer’s disease. He was now dying ... His wife, who also had Alzheimer’s and was no longer capable of much conversation, sat in a wheelchair by his bed and held his hand. She kept repeating to me, tears flowing, “We’ve been married for 73 years, you know.” It was a kind of mantra. How could I know what it’s like to be at the deathbed of a partner with whom you’ve intimately shared 73 years of life? All the stories, all the peaks and valleys, of such a lifetime? ... Editor's note: May we listen and learn.

Grief and bereavement books for kids and teens Evermore; list developed in collaboration with Dr. Donna Gaffney; 2/1/25... How can a young person grasp the enormity, meaning, and consequences of an occurrence that brought death, injury, or harm into their life? ... Because books can be such a powerful balm during a time of grief, here’s our list of favorite books for kids and teens that explore the difficult experiences of death, grief, loss, and bereavement. [Click here for the full article with book descriptions, photos, and links.]

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."