Up Close & Personal: Caregiving for my sister with a brain tumor
By Katherine I. Pettus, PhD
IAHPC Senior Director of Advocacy & Partnerships
The new IAHPC online course, Palliative Care in Neurological Conditions, cosponsored with the International Neuropalliative Care Society (INPCS), is a unique, eye-opening offering that features engaging lectures by leading senior clinicians followed by compelling interviews with neuropalliative patients and caregivers.
Lisa shares a sweet moment, selecting truffles, with my brother. Photo used with permission.
As I write this, I am caregiving for my older sister Lisa who, having been diagnosed with advanced glioblastoma in April, was given a prognosis of two to three months maximum with no treatment. Having seen another family member go through surgery, chemo, and radiation for the same type of tumor, Lisa opted for palliative care and hospice rather than possible futile and debilitating treatment. A wise decision. Lisa and her son engaged Hospice of the North Coast in Carlsbad, CA, which provides full-service home care and in-patient respite and symptom control when necessary.
Unexpected gains, but swift change is possible
Since Lisa wanted to stay at home, I flew to San Diego from Toronto after the Canadian Bishop’s Conference to make good on my promise to care for her whenever she needed me. So far, Lisa has outlived her prognosis, and after one seizure two weeks ago when we thought we’d lost her, she rallied and is now back to eating on her own, walking up and down steps with help, and performing most activities of daily living (ADLs) with minimal support. That said, one thing I have learned from the first three modules of the new course is that things can change in a heartbeat, and the best directive is to make the most of every moment.
Family caregiving is a tough row to hoe, even with great hospice support and home health aides for a few hours each day. It is also a grace and a privilege I would recommend to anyone who has the opportunity to do it. It is important to have some training (I am a trained hospice volunteer) and to have as much information about “your” patient's condition as possible. That’s one reason why the new course includes caregivers themselves as active participants, and why IAHPC will be offering a caregiver course that kicks off in October on the International Day of Care and Support.
Current course on neuropalliative care helps caregivers like me
Having also spent several years caregiving for my younger sister, who died of a different kind of brain tumor just over three years ago, I wish I had known all the symptom management information I gleaned from Jessica Besbris, director of neuropalliative care at Cedars-Sinai Medical Center, who gave Module 3 of the new course. Module 1, on neuropalliative care for children, featured a lecture by Audrey Foster-Barber, professor of child neurology at University of California San Francisco, and interviews with two mothers of children with palliative care conditions, who advocated for more patient- and caregiver-centered approaches throughout diagnosis, treatment, care, and bereavement. Many of the anti-seizure medications Dr. Foster-Barber recommended, which are controlled under international law, are unavailable in lower- and middle-income countries. This is an important area for IAHPC advocacy at the Commission on Narcotic Drugs in Vienna.
Module 2, "Palliative Care for Persons with Multiple Sclerosis", featured a lecture by Simone Veronese, head of research at Fondazione FARO ETS in Turin, Italy, and an interview with Charles White, an African-American man with multiple sclerosis. Mr. White spoke about the structural racism and disrespect he encountered in the New York health system as an MS patient until he found an African-American primary care physician and was hired by the University of Rochester Medical School to start a community outreach program on brain health. There is a huge amount of advocacy and building awareness to be done in this domain of palliative care: we look forward to supporting these needs, upon request.
I will moderate Module 4, “Neuropalliative and Spiritual Care in Alzheimer's Disease and Related Disorders in Low Resource Settings,” featuring Richard Bauer, a chaplain known to many for his work with PallChase, and Mataa Moses Mataa, a Zambian palliative care physician and neurologist who founded Alzheimer’s Disease and Related Dementias in Zambia in 2023. Fr. Bauer and Dr. Mataa will be joined by two caregivers of persons with Alzheimer’s from the African continent.
The course is free for IAHPC and INPCS members; please consider joining or renewing your membership to watch the first three modules and catch the remaining four live sessions, all of which include an online Q & A.
Join IAHPC or renew your membership.
Read more of this week's issue of Pallinews
Volunteers at the Helm
India's largest home care service successfully fosters centers run by volunteers.
On Being an IAHPC Delegate
A fun-filled & enriching experience to help propel palliative care to the fore, as described by Sherin Susan Paul.
Plus
Help Finding a Palliative Care Service Near You IAHPC's Global Directory of Palliative Care Institutions &, in the Asia-Pacific region, APHN's General Palliative Care Service Directory & Paediatric Palliative Care Service Directory. (Your institution isn't listed? Click the appropriate directory link for instructions.)
On Mortality and Meaning, a recent episode of the thoughtful On Being podcast, is a conversation with U.S. surgeon Atul Gawande, author of Being Mortal: Medicine and What Matters in the End (reviewed by Roger Woodruff).