The University of Colorado’s Palliative Care Coursera Specialization launched about a month ago and people all over the world are starting to find their way to the course. I wanted to share with you the experience that a student sent us.
“Take My Breath Away” was written specifically for the movie Top Gun, starring Tom Cruise and Kelly McGillis. The movie was a hit but the song has lived on with covers by many pop artist. If only I could get people to pay as much attention to COPD as to this memorable song. After all, people living with COPD, constantly feel breathless.
No One wants to die. This is usually followed by some “inspiring” pabulum; such as the Steve Job quote from his 2003 Stanford graduation address:
“Death is very likely the single best invention of Life. It is Life’s change agent.”
Although few knew he had been diagnosed with pancreatic cancer a few year before. A cancer that he would die from in 2011.
Understanding what you mean by “provide comfort care” can be very challenging. We use the term as shorthand within medicine, but it is confusing to the “real” world of our patients and families. Palliative care is often focused on helping people be more comfortable, but isn’t that always our goal in medicine? We sometime employ the scalpel or the toxic chemical to take patients through great discomfort to get to an end of feeling better, but our long-term goal is to give the patient more comfort and peace so they can pursue what gives life meaning to them.
Walking on cobblestones in the old historic town of Prague is a question of mindfulness and balance. I practice my mindful walking meditation as I take each step, hoping that my well heeled boots do not get caught up in the gaps between these ancient stones. I know there is a metaphor for life hidden somewhere in these stones. Tram #15 will take me on the journey to the suburbs where Cesta domu’s offices reside.
It is quite a coincidence that I am teaching an ethics module this week on Truth-telling and Confidentiality for the Certificate and Master’s program for Clinical Specialists in Palliative Care. There are lots of challenges in palliative care practice where clinicians struggle with these dilemmas – is it OK to take off the nametag that identifies me as from hospice if so requested? Can the family ask that we not tell the patient their diagnosis of terminal cancer? Should I disclose HIV status to a decision maker for a critically ill patient dying of their HIV-linked brain cancer? But the topic that is “hot” this week is how to manage patients with dementia.
I was part of a team of palliative care providers that developed and later worked in the Safe Harbor Palliative Care Unit at the VA Medical Center in Birmingham Alabama. We came up with the name “Safe Harbor” because it resonated with military veterans and we imagined our patients as being “on the stormy seas of end-of-life looking for their Safe Harbor”. Safe Harbor quickly became the shorthand for providers, patients and families for all things Palliative and seemed to reduce the anxiety some people had about Palliative Care.
Recently, I was attending a conference in another city so I was taking a Lyft a couple of times a day. As usual I am talking to the drivers. When they found out I was a doctor, several told me that they were part of program that Lyft had to help people with chronic illness and without transportation get to doctors’ appointments. How could this be?
The New York Times recently had a provocative essay about a man with progressive heart failure who made the choice to have a Ventricular Assist Device (VAD) insertion, even though it would be a “destination” therapy to which he would be attached for the rest of his life. The author, a critical care doctor, was curious about what life was like, living with the dependencies intrinsic to this heroic device.
During my orientation to Clinical Pastoral Education, the training program for professional chaplaincy, Dr. Jeanie Youngwerth gave us an introduction to the field of palliative care. She brought an important teaching tool—a novel. As she began reading from a random page mid-book, she noted the confused looks on our faces and then graciously turned back to the opening line. “Just as a novel doesn’t make much sense when you start in the middle,” she said, “neither does a patient’s care plan if we don’t know the background of their story.” She also suggested that the opening line is significant. “We learn a lot about what matters to someone based on where they choose to begin their story.”
To Take or Not to Take. That is the question. Should I take this pill or not? In the last few weeks I stopped taking a baby aspirin. I started some years ago when I took a look at my family history. We Baileys seem to burn the candle at both ends and sadly, longevity does not run in my family! I thought, a baby aspirin is good for what ails you and what is the harm? I trotted off to the local pharmacy and stocked up. Over the last 10 years the benefit of baby aspirin as a preventative measure has been chipped away. First not so helpful in women and then perhaps not in men. Recently NEJM put out the definitive article that demonstrated lack of benefit and about a 3% chance of some serious bleeding.*
Recently, we have been caring for a homeless veteran. We call him Mr. J; we have been trying to help him which, at times, seems impossible. Over time we have learned a few things. He is from the upper Mid-West; has some family there, but has lived here in Alabama for at least the last two years, in a camp in the woods.
There is a fever in healthcare. “We are Burning UP! About Burning Out!” Many of us feel burned out at times. Then we read how our colleagues are reporting they are burned out as well. People are making a career or at least devoting a significant amount of their professional work to understanding why we are so dissatisfied with our life and work.
Zeke Emanuel, a famous physician-ethicist, has widely written and spoken about his hope to die at 75. He does seem to be something of a showboat, announcing this hope 4 years ago in an article in The Atlantic, much to the consternation of family and friends. When you get past the intentional shocking proclamation you learn of his caveats.
We have all found our way to End-of-Life care and what we do for our patients is fascinating but just as interesting is how we all got here. Continuing our series, “Pathways to Palliative Care,” we feature Judy Knudson, a Board Certified Physician Assistant specializing in Hospice and Palliative Care.
This is the earnest question I heard from a 5-year old girl to her mother as they left the church after the funeral. Brave of this mother to bring her daughter to the funeral. Many parents might not. I don’t know how she answered her daughter’s question.
In The Princess Bride, the hero Wesley appears to have succumb to torture and has died. In desperation his friends take him to Miracle Max who informs them that
“It just so happens that your friend here is only MOSTLY dead. There’s a big difference between mostly dead and all dead. Mostly dead is slightly alive.”
I loved this carton as a kid. The clearly crooked rocket that would probably blow-up. Yet it is only at this late point in the process that they start to lose faith and accept the reality that they are not rocket scientists. I was always interested in science and thought I might want to be a scientist someday. Ultimately, I became a physician specializing in palliative care. I often think, “This isn’t rocket science!”
We only die once. We only have one time to get it right. Working on a palliative care team I have had the honor of caring for thousands of patients who died in one of our palliative care units or while being seen on the palliative care consult service. Delirium was a common and dreadful symptom. When I would look into the eyes of a delirious person I would see terror and anguish. When I looked around the room, I would see family members mirroring those feelings. Hoping their loved one could be more comfortable and hope for the opportunity for last words and moments of connection.
The recent New Yorker article entitled “The Death Debate”, a review of the case of Jahi McMath 3 years after she was declared “brain dead” has sent tremors through the bioethics community on our campus and the country.