Joint Palliative Care/Neuro Course Broke New Ground
By Alison Ramsey
IAHPC Pallinews Editor
IAHPC's course on Palliative Care in Neurological Conditions, held earlier this year, was a landmark event in more than one way. It was the first course produced jointly, in partnership with the International Neuropalliative Care Society (INPCS). Also, along with the expert specialists, all seven modules included presentations from either those with the condition being discussed, or a caregiver.
Facts & Stats
Neurologic illness is a leading cause of morbidity and mortality worldwide. It is expected to increase.
As of the end of August, the 7 modules had been viewed a collective 690 times.
518 logged onto the live sessions; the taped modules are still—and will remain—available.
The most-watched module so far has been "Neuropalliative Care and Spiritual Care in Alzheimer's Disease and Related Disorders in Low-Resource Settings."
The other topics covered are: pediatric care, and those with multiple sclerosis, brain tumors, Parkinson's, ALS, and severe brain injury. This and all IAHPC courses are free to members (join us!).
"We have been disconnected from the persons we're supposed to be advocating for," comments IAHPC Executive Director Liliana De Lima, adding that with this new format, "we're really taking into account their voices. It has been an incredible learning experience for me.
"By hearing the voice of patients and family members/caregivers, I realized that frequently their worries or needs are not addressed or even considered. Palliative care is supposed to be patient-centered care, but this is not always the case. Patients and caregivers are often left out from decision making and planning, and this is wrong."
Andrew Huang, the INPCS physician who co-led the course and a neuropalliative care research instructor at the University of Rochester, New York, added, "We thought that, separate from our clinician or health care perspectives, it would be ideal to engage our patients and care partners themselves to access their lived experience of neurologic illness. I have learned so much from my own patients about neurologic illness, often more so than in training."
The impact will be lasting.
De Lima pledged that "we will make sure that in all future courses we will always have a representative of a patient and/or caregiver in the panel."
Huang noted that "a longer session would allow for a deeper dive. From a live audience perspective, shorter talks are more effective [...], however from a recording and course perspective, more content is better. I would have liked to have more time for the care partner/patient portion, especially when we had multiple panelists who wanted to speak longer."
Some participants felt the same. While the satisfaction survey taken immediately after each module showed general agreement by participants that the course was "extremely valuable," some noted that, "I wanted the lecture to be a bit longer" and that more time for discussion would have been appreciated.
Quick Fix: How to translate the modules' subtitles
Step 1: Using the blue arrow as your guide, click on ">>" (or ⋮).
Step 2: Click on "subtitles."
Step 3: Scroll down the list on the right to your preferred language (in this case, Spanish is selected), and click on it.
That's it! Your preferred language for the subtitles will automatically appear, as seen below.
Reminder
Online, Free Webinar on Spiritual Care Sept. 21
On Saturday, September 21, IAHPC celebrates the 2024 International Day of Peace with a free webinar: "Spiritual Care in Serious Illness: Cultivating a culture of peace." The webinar is for palliative care practitioners, patients, caregivers, and the public of all faiths and disciplines, including the non-affiliated.
Last year's webinar on the Day of Peace that can be viewed at any time is "Peace in Serious Health-Related Suffering at the End of Life." Find all our webinars and courses under "IAHPC Resources" on our homepage.
The webinar is for palliative care practitioners, patients, caregivers, and the public of all faiths and disciplines, including the non-affiliated. Register here. All of IAHPC's online webinars are accessible to all for free both live and on our website.
Read more of this week's issue of Pallinews
IAHPC membership surges
Members help palliative care provision more than they may know!
Plus
Saturday, October 12 is World Hospice & Palliative Care Day. The theme this year is: "10 Years Since the Resolution: How Are We Doing?"
ICPCN's annual #HatsOn4CPC event to increase international awareness of the need for pediatric palliative care takes place on Friday, October 11.
The 16th Asia Pacific Hospice Palliative Care Conference 2025, taking place in Malaysia on April 23-26, 2025, is accepting abstract submissions until November 14, 2024.
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