We are now working and living through the most serious public health crisis of our lifetime and careers. This is and will be physically, emotionally, spiritually, and ethically challenging. You know that sounds like what Palliative Care is all about. We have committed ourselves to caring for the whole person and family, to transform our healthcare systems and to transform ourselves though study and reflection.
Mar 17, 2020
by Melissa C Palmer, LCSW, ACHP-SW, APHSW-C, JD
I heard her through the phone. A distance linked only by a cellular connection. But I felt her deeply in my being. “My daughter is coming home from college”, she whispered. “They closed her University. She has a fever and a cough. What I am I going to do?”. Her lung cancer was progressing. Her immunotherapy wasn’t working. And now she was facing another more serious threat. What if her daughter had COVID 19?
What a quandary! Family members in a recent study rated the quality of end-of-life care in ICU as higher than other parts of the hospital for their family members who has recently died. In our palliative care work we are struggling to help people who are at EOL to avoid or to get out of the ICU.
Diagnosis with an incurable health condition often prompts people to ask Why is this happening to me? During the early phase of tests and diagnoses, we often rely on understandings of illness inherited from the familial, social and cultural contexts of our childhood and youth. Over time, we’re better able to make sense of illness using core values, beliefs and meanings we’ve chosen as adults.
Working on the inpatient palliative care service, I heard people repeatedly reference “a shift” that had occurred — whether it was during a one-on-one conversation with a patient, a family meeting, or while discussing a patient’s care with her primary provider. I didn’t expect how powerful these shifts could be until I started witnessing them firsthand. I especially didn’t expect to see a shift within myself.
Mr. B is excited to go home today. This past month has been difficult for him. He was admitted to the hospital with pneumonia that turned into sepsis. Later it became clear that the infection resulted from a newly diagnosed lung cancer that had blocked his airways. Initially on a mechanical ventilator, he could not talk, and then when delirium set in he was very confused.
When you tell people you work in hospice and palliative care, common responses are perhaps admiration and condolences. Often people say in their expression if not in their words, “I could never do that!”.
I survived two powerful tornadoes in my lifetime. When I was a kid, a violent tornado devastated my hometown in Kansas. Ironically, our family lived in “tornado alley” without a basement or storm cellar. On that fateful night in 1973, our family ran out into the spiralling wind and pelting rain toward hoped-for safety in our neighbors’ basement across the street. My palms still sweat when I recall banging my fists frantically on their front door to wake them. Thankfully, we all survived the storm and our home was spared damage, but this traumatic experience left me trembling for years at the mere prediction of rain.
“I wonder as I wander…..” This fragment of an Appalachian folk song would become a Christmas carol. I heard this song again this year and it reminded me of an important lesson a hospital chaplain once taught me. “What do you say when people say they wonder why all this has happened?” he asked me. I stumbled but had no answer. He continued, “They seem to be wandering in a wilderness. They may seem lost and they wonder why. You need to be out there with them, wandering too and naturally you will wonder. At least they’re not alone.”
How exhausting it must be; to know that others that love you and that you love worry about you as the serious illness progresses! There is nothing you can do. You have no agency except… perhaps to die. This is the sentiment that I hear,
This is a question that we often are taught to ask patients as we try to put the “person” back into end of life plans. And I know in our own minds we think we know the answer. Getting people home to die in the place most familiar to them is often one of our priorities in end-of-life care.
Dec 31, 2019
by Melissa C Palmer, LCSW, ACHP-SW, APHSW-C, JD
From all the MSPC team, thank you for including us in your lives this past year. We look forward to an exciting year ahead. We are taking a short respite so please enjoy this post from the archives of the MSPC blog.
Our MSPC team is taking deep breaths, working on resilience and leaning into the season to refresh. We are so grateful to you for inviting us into your lives each week. We look forward to re-engaging in the new year. We wish you all a peaceful, joyous season.
Mr. K had been sick for a long time. Although he had dementia and thought Nixon was president, he did remember that he has had Multiple Myeloma for 14 years. That is a long time for a disease where the average life expectancy is 3-4 years. Few people live more than 5 years.
The Safe Harbor Palliative Care Unit at the Birmingham VAMC had been open for a few years when Carol was admitted.
Donna, “We just got a call from the Medical Oncology Clinic. They say that they want to admit someone straight to Safe Harbor?” The Palliative Medicine Fellow was dispatched to check this out while we made ready for an admission.
I clicked on the link. A photo of a man, clearly chronically ill, but in a safe and clean environment. Chuck is the feature of the article. He had been homeless or incarcerated most of his adult life. Now with a terminal illness, he has hospice care in supportive housing.
MD Anderson Cancer Center has changed its branding to scratch the word Cancer out of their name.
I don’t begrudge them. They have done amazing work as have many others with developing treatments for cancers that once routinely killed. However, Cancer still Sucks and will lurk in almost all of our lives as either someone living with cancer or a family or friend with the disease.
I had been seeing Tricia for about a year. She had been referred to me for ITP, Immune Thrombocytopenia, (a low platelet count) back in the mid-1990’s. In the history I elicited that she was sexually active and had unprotected sex with several partners over the last few years. Her platelets were low but not dangerously so. I recommended no immediate treatment but rather that we should do some workup. That included an HIV test.
I was able to visit Cuba just after this country opened its borders to the United States in 2016. I remember being so excited about not the typical things many Americans would be — smoking cigars or drinking mojitos — but rather being able to have a first-hand introduction to one of the best healthcare delivery systems in the world. I’m was not traveling alone. On this journey, I have the honor of traveling with six other adventurous women led by Dr. Joan O’Connell, Health Economist and Professor at the School of Public Health.
I’m jealous! All around me I hear people speaking in different languages. They graciously switch to English but I wish I spoke another language fluently. My Spanish allows me to greet someone, ask if they have pain and what number it is, but that is about it. I commit to improve my Spanish but really never make progress.