Dax Cowart died last month at the age of 71. Wow. This is the end of a life that has challenged so many of us in bioethics. His legacy is huge, and many of us have used his story to propel our own thinking over the past almost 50 years. Dax was a veteran and 25 years old when he and his father were burned in an explosion in the Texas oil fields. His dad died. Dax asked the farmer who found him to get a gun and let him shoot himself. The farmer refused. He was transported to a local hospital and then to the Burn Center at Parkland – in those days without any pain medicine en route for hours.
Will really wanted to go home. He had a serious complications from diabetes that had resulted in poor blood flow to his feet and legs and now he had two toes amputated. The foot was healing but it was slow going. We all thought he needed dressing changes, IV antibiotics and close supervision for the next month. Will agreed but he also thought he needed the comfort of his own home.
I am a palliative care social worker who believes intrinsically that there are things worse than death, who is rooted in the power of language, who provides care in acute settings and understands teaching hospitals, who has made a hundred referrals to hospice – and yet I almost got stuck letting my own mother die in the hospital where she never wanted to be.
Let’s go back up to a critical point. I had pleaded for this hospice evaluation, but was afraid. We had no reasonable option other than inpatient care. Our family is small and scattered, we had been told it may be weeks before the stroke shut her brain down, we knew how scary her agitation and secretions were.
After we opted against surgery, they very reasonably moved mom from the ICU to receive “comfort care” on a regular hospital floor. It was the morning after her stroke, although time no longer was the anchor from which we operated, and it was my shift to sit up with mom and listen for her gargling secretions.
While taking input from specialists in this frantic time prior to making the final decision to forgo the surgery, we met with a new-to-us neurologist. This man agreed that surgery would result in extreme limitations (or death) but that mom may make progress in the future if she survived. He could not say what progress (remember, and don’t you ever forget….
My mom had a catastrophic stroke in December of 2017 – almost five years to the day after a more mild one – that ended her life at the age of 72. Following the craniotomy from her previous stroke, she drove again, lived independently, had no perceptible deficits. She went on to sail through treatment for an early stage breast cancer and three joint replacement surgeries. She had a tooth extracted and then regrown from a cadaver bone graft. She was determined.
There has been a number of articles, videos, and books on the role of psychedelic medications and the role they might play in helping people deal with their existential fears near the end-of-life. Now Michael Pollan, the food writer, has a new book out called “How to Change Your Mind.”
Apr 9, 2019
by Melissa C Palmer, LCSW, ACHP-SW, APHSW-C, JD
Palliative care professionals works tirelessly to meet the comprehensive needs of those patients and loved ones who are attempting to navigate serious illness. We are laser focused in targeting gaps in care and stepping in with a full IDT to close those chasms.
Art Buchwald was a famous newspaper columnist! He even won a Pulitzer Prize, he was funny and he also had end-stage kidney disease. In 2007 he made a decision to stop having dialysis. Told that he had at most days to a few weeks to live he enrolled in a hospice.
Facilitating spiritual and cultural rituals as desired by patients and families is an important component of holistic palliative care. The National Consensus Project for Quality Palliative Care makes this clear in their Clinical Practice Guidelines – Domain 5: Spiritual, Religious, and Existential Aspects of Care.
Reflective writing is an important part of my spiritual practice and my wellbeing as a healthcare professional. I’m grateful for recent collaborations with The Human Touch, a literary journal for the Anschutz Medical Campus at the University of Colorado, as well as Z Publishing House. This piece was originally published in a 2018 poetry anthology from Z Publishing. I hope it sheds light on the frequent role of accompaniment in a chaplain’s care for patients and families. The third section, in particular, emerged from a difficult case that highlighted the best of interdisciplinary teamwork.
I first started making “house calls” to my home hospice patients in 1989. It was a privilege to be able to come into the house to see the patient in the often comforting disarray of their home and the love in action displayed by families and friend that were providing care. I quickly developed my own ritual or pattern for my visit, which included sitting and talking with the patient and family, a brief exam and review of medications and care supplies.
Feb 26, 2019
by Harri Brackett, RN, MS, CNS, ACHPN
That is how you feel when a good friend is dealing with her own palliative care family situation from afar. Even the best palliative care clinician can get trapped in the Western health merry-go-round and subsequent family sink hole.
I had visited Mr. Williams several times over the last few months. In his early 60’s he had been diagnosed with lung cancer after years of tobacco use combined with working in the steel mills of Birmingham. He had moved in with his sister. She lived in a “section 8 housing” apartment in a rough neighborhood.
Is healthcare a business? Should it be a business? These are serious existential questions that need to be answered as palliative care works to be mainstream. Hospice, the first incarnations of palliative care in the US, started as a volunteer charitable community project. In 1982, a hospice benefit was added to Medicare, which led to development of a hospice industry. It is wonderful that hospice is now available across the country but what are the cost? What has been loss and what are the unintended consequences?
This stanza from Mary Oliver’s poem “Sometimes” has made its way into every essay I have written about my philosophy of ministry, from divinity school applications to capstone papers for chaplaincy training. It has become a life motto, a beacon for the path of spiritual practice. Oliver herself calls paying attention “our endless and proper work.” The announcement of her death on January 17 certainly called me to attention.
Victor Frankel’s book Man’s Search for Meaning outlines his experiences in the holocaust, the loss of his family and all that was precious to him, and his continued search and hope for meaning. It is popular for Palliative Care programs to assign this book to students as an introduction to the nature of suffering and the search for meaning. Fortunately, few people will have an extreme and challenging experience like Frankel but we all suffer and we all search for meaning.
Over the weekend one of our hospice patients had been brought to the Emergency Department when his temperature was 101. His work-up had revealed WBC’s in his urine and he had been admitted for a possible UTI. He had even spent a couple of days in the ICU when his BP was “low”; in the 90”s. Now a week later, after developing delirium, an early stage decubitus ulcer, bruises on his arms from blood draws and IV’s and becoming considerable weaker, we were preparing to readmit him to our home hospice program.