Dr. Deborah Birx said she remembered the guilt borne by her grandmother who caught the Spanish Flu at school and brought it home. Her grandmother’s Mom fell sick and died.
"My grandmother never forgot that she was the child who innocently brought that flu home from school and passed it to her mother," Birx said. "My grandmother lived with that for 88 years ... this is not a theoretical. This is a reality."
Die At Home?
Nancy Robertson, NP | March 24, 2020
Reading Nathan Gray’s recent opinion piece Op-Ed: Think you want to die at home? You might want to think twice about that hit a nerve. In this piece, Mr. Gray highlights the very real distress of caregivers as they attempt to care for their ill and dying loved ones. This is not new information. Though care of the dying has improved significantly since Congress passed the Medicare hospice benefit in 1982, the infrastructure of home services continue to hold chasms of gaps in support. Caregivers continue to struggle under the enormous burden of attempting to care for their dying loved ones without any financial, social, psychological and physical support. Read more...
COVID 19 Tsunami
Nancy Robertson, NP | March 17, 2020
I heard her through the phone. A distance linked only by a cellular connection. But I felt her deep-ly 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?
Message from the MSPC Director
Amos Bailey, MD | March 16, 2020
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.
Intensive Caring Unit
Amos Bailey, MD | March 10, 2020
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.
Are there some things about the ICU which may improve family members ratings? I can think of a few.
Kelly Arora, PhD | March 3, 2020
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.
Standing in the Door
Amos Bailey, MD | February 25, 2020
Zeke Emanuel, recently wrote in The Atlantic about the care of his 92-year-old Father. His dad, a physician, fell in his home and was taking to the ED. A CT Scan, while still in the ED, revealed a primary brain tumor and started a cascade of medical care that he describes having to fend off. On a Sunday morning, after his Dad was admitted on Saturday night, they meet with a neurosurgeon and neuro-oncologist.
Erin Drake | February 18, 2020
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.
Hope Springs Eternal
Amos Bailey, MD | February 11, 2020
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.
The Price We Pay
Amos Bailey, MD | February 4, 2020
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!”.
In reading Rebecca Synder’s recent essay This Quiet Lady in JAMA, I was reminded of “painful” lessons we learn. Dr. Synder recounts her experience of training as a surgical oncologist when her mother is diagnosed with metastatic lung cancer. This cancer is not amenable to surgery and treatment with both the new and old types of cancer treatments are not helpful but also have disabling side-effects.”
Caught in the storm
Kelly Arora, PhD | January 28, 2020
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.
"I Wonder as I Wander Out Under the Sky"
Amos Bailey, MD | January 21, 2020
“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.”
He then sang this song “I wonder as I wander out under the sky.”
At times I just pray...
Amos Bailey, MD | January 14, 2020
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,
“At times I just pray, if I die they will at least stop worrying about me.”Read more...
Dying at Home
Jean Abbott, MD | January 7, 2020
“If time were short, where would you want to be?”
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.
I learned the lesson of needing to broaden my perspective from one family early in my career. It was many years ago, in those days when my answers were clearer and I knew a lot more than I do these days. My education came one weekday morning in an ED in Maine. Read more...
Happy New Year from the MSPC team!
December 31, 2019
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. Read more...
Happy Holidays from the MSPC team!
December 24, 2019
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. Read more...
December 10, 2019
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. Read more...
Hospice Early-Early Hospice
December 3, 2019
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. Read more...
Number to the Pain
November 26, 2019
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. Read more...
November 19, 2019
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. Read more...
You Did Not Teach Me What You Thought You Did
November 12, 2019
Carlson’s recent essay in JAMA, “You Did Not Teach Me What You Thought You Did”, reminded me of all the times my words and actions had unintended consequences.
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. Read more...