The issue of comfort feeding, particularly in dementia, arises frequently in my hospice work. I find myself discussing this topic with caregivers, families and my colleagues. I’m not sure that a concrete definition for “comfort feeding” exists and I see a wide range of how families and caregivers operationalize this concept. The idea of “comfort feeding” or “careful hand feeding” arises usually in dementia when a decision is made to continue feeding the patient for pleasure despite known risk of aspiration.
A faded photo sits on my desk. It used to be tacked to a corkboard in my Dad’s workshop. In it, a sixteen-year-old girl wears a camouflage jacket and a wool ski cap. She crouches in a patch of snow, holding her rifle in one hand, and one of the horns of a large bull elk in the other.
As a graduate student studying palliative care, I am optimistic about the field's future. I have seen firsthand the impact of palliative care on patients and families in my own community and am thrilled to see this medical subspecialty becoming more widely recognized for its value and significance. However, I have also observed the obstacles for progress in this field.
It wasn’t long ago that I received a phone call from my best friend T. His mother had slowly progressive, moderate dementia but was relatively stable. T is her MDPOA and all advanced care planning was carefully documented.
Entering my fourth decade, I was pleasantly surprised to find that I still find complete and absolute wonder while gazing at the sky. Daytime skies- I’m in awe of the different shades of blue and the infinite configuration of clouds and cloud types. Evening skies- how does all that blue transition before our very eyes to pink, orange, and purple? How can the clouds create such stunning shadow shapes?
I’ve worked with adults for my whole career in health care, but occasionally I will meet with the children of my cancer patients who have questions about what their parents are going through. On this particular day, I was looking into the big, brown eyes of an eight-year-old with her long black hair in pigtails rocking an outfit that I wish I could pull off: purple and pink tie-dye with purple sneakers accented with sequence and glitter.
In palliative care, we routinely ask patients where they prefer to spend their last days. Statistically, most prefer to die at home, and in my practice, “home” is certainly the most common answer I hear. What happens, though, when “home” isn’t across town, but rather across the world?
There are few symptoms that those of us without personal experience with a palliative care diagnosis haven’t had, at least temporarily in our lives. Pain, yes. Nausea/vomiting, yes. Fatigue, insomnia, depression, anxiety, constipation, diarrhea, cough, hiccups, headaches, loss of appetite and dry mouth, yes and thankfully temporarily.
Sitting in a courthouse for jury duty, it’s strange to be here, recognizing the differences in the work that we do. Here, in the court, there is a judge. There is a jury of the general public that helps to decide who wins the case. There is the presentation of the case, the evidence, the witnesses to provide context for the case brought to the court. But when it comes to our work in palliative care, who is the judge when it comes to making decisions about one’s life and the care we provide?
I find myself at a complicated stage in my life where I ponder about what brings meaning to my existence. I spend more than fifty percent of my life working or doing something related to the medical field. Being on the front line during the pandemic and continuing to care for people who are now my age or younger with end-stage illnesses, I question what it will take for me to slow down and appreciate the simpler things that once brought me joy… before it’s too late.
I read this book last week “Queen of Katwe” by Tim Crothers. It’s based on a true story of a girl who dared to dream larger than her circumstances and became the first Woman Candidate Master of chess from her country, and she is not done dreaming yet. If it wasn’t for Robert Katende, a war refugee turned missionary, Phiona would not have known chess existed.
When I set out to be a physician, I imagined myself like those old country doctors, with my black bag in hand, going out into the community, creating relationships, telling stories, spending time with patients and their families. So medical school and then my practice were like a big bucket of cold water that was dumped on my head.
As the new year approaches, we at the MSPC wish to stop and take a moment to thank our loyal subscribers for taking the time to read our posts. We wish you all a peaceful, joyous transition into the new year.
In 2018, my opinion about false hope evolved through my experience journeying with my stepmother, Ann, throughout a battle with ovarian cancer. Ann was a physician who desperately “fought the cancer” for 2.5 years. She attempted every invasive intervention offered to her. She had multiple pleural taps for her pleural effusions, abdominal surgeries, pleurectomy and decortication.
I walk up the steps of the front porch. Halloween decorations adorn the steps and door. A witch, Jack o’ lantern, and a big spider on a web are placed just perfectly so, and ready for the festivities of the coming day. I enter and hear the tapping of a dog’s nails as he trots across the room to come greet me. His tail wagging; his fur is soft. I feel the dog licking my hand and I smile.
Nov 29, 2022
by Melissa C Palmer, LCSW, ACHP-SW, APHSW-C, JD
First and foremost, shame is a UNIVERSAL emotion. We have all felt shame at one point or another. However, we hide our shame because of the underlying fear that acknowledging those dark, imperfect parts of us will cause us to be shunned from our community and our people. As a result, shame festers and grows when it is held in secret isolation.
Nov 8, 2022
by Christine Merchant MSPC BSN RN CHPN
I recently read a book from my book group called “Golden Girl” by Elin Hilderbrand. The main character, a successful author, living in Nantucket is a single parent with 3 children ages 17 to 26. Early in the book she was the victim of a hit and run passing away.