Life before Death

May 10, 2024

“We cannot change the outcome, but we can affect the journey” – Ann Richardson

Each year an estimated 56.8 million people are in need of palliative care, most of whom live in low- and middle-income countries. Yet, worldwide, only about 14% of people who need palliative care currently receive it. These statistics, provided by the WHO, showcase the importance of increasing the availability of palliative care globally to ensure that individuals feel supported and safe even at the end of their lives.

The four MSKCC physicians Drs. Alan Carver, Elena Pentsova, William Rosa, and Andrew J. Roth, are experienced in comforting people during their last days. Hence, they volunteered to lead the Palliative Care in Neurology and Neuro-Oncology Seminar, which took place from May 5-11, 2024.

This course provided an up-to-date summary of some of the latest developments in the challenging field of palliative care in neurology and neuro-oncology. These were some of the highlights: neurologic complications of cancer and its treatment, opioid and non-opioid pharmacology in cancer pain management, psych-oncology: depression, anxiety, delirium, global palliative care disparities, LGBTQ+ inclusive palliative care, how to advocate for palliative care at home, as well as patient & clinician suffering: caring for patients, their families, and each other.

The 27 fellows from 20 countries intently listened to the diverse didactic lectures throughout the week. The seminar also included two sessions for fellows’ presentations and interactive role play workshops, which offered fellows the opportunity to practice how to talk and how to listen.

Dr. Carver explains the significance of palliative care as “the medical specialty has many dimensions. At its heart, palliative care is a multidisciplinary effort to meet the medical, psychiatric, psychosocial, and spiritual needs of patients whose disease is not responsive to curative treatment. Expertise in palliative care and competency in symptom management, including pain and other distressing symptoms, are paramount.”

The seminar included a hospice visit to the Barmherzige Brüder Raphael Hospiz Salzburg, which gave the participants a glimpse into palliative care in Austria. Upon arriving at the hospice, Dr. Carver and fellows were greeted by Medical Director Dr. Ellen Üblagger. She described her and her colleagues’ daily routines, the history of the hospice, and their approach to patient care. The hospice team includes nurses, doctors, physiotherapists, psychologists, chaplains, and even musicians. Amongst other things, the group learned that family members and friends are always welcome to visit patients, stay overnight, and take their relatives or friends on day or weekend trips.

After a round of questions, the group was shown a living room where music therapy is held, a spacious patient room, and the books into which the staff write down their experiences with patients, amongst them their last moments together. Dr. Üblagger explained that the books were important for the team as they served as a way to grieve and remember their patients by. The fellows appreciated being able to see the multiple volumes of thick leatherbound books filled with memories and photos of late patients. Some fellows pronounced that they would start a similar practice of remembrance in their own institutions.

“As I see the disparity of pain medication and its impact on my patients in Ethiopia daily, the lecture on the availability of drugs in different countries resonated very deeply with me.”

Abera Bayable, MD

OMI fellow from Ethiopia

“We learned how to interact with patients, how to deliver bad news, and how to leave room for hope, even when patients are in the terminal stages of their diseases. The seminar was about helping each other, but also about self-help.”

Lusine Vardanyan, MD

OMI fellow from Armenia

“At the hospice, we learned how the staff makes patients feel comfortable and relieves their pain. It didn’t feel like a sad place and the atmosphere was calming.”

Beate Raituma, MD

OMI fellow from Latvia