Need to know information for every family caregiver
Hello KIRC family!
How much do you know about palliative care? If you answered, ‘not much,’ you are not alone. As a family caregiver, this is a discipline more of us should know about long before we enter a crisis moment. As much as I thought I was ready to take on the role of family caregiver for my mother, I knew nothing of palliative care. Despite numerous visits to doctors’ offices and hospital stays – not a single care provider informed me or my mother of this approach.
In this edition of In Your Own Words, KIRC turns the platform over to Dr. Aldebra Schroll. She is Board certified in Family Medicine and Hospice/ Palliative Care. She is also a family caregiver to her parents.
*I also recently had the chance to sit down and talk with Dr. Schroll, about palliative care from both a professional and personal perspective. You can watch a portion of that conversation in the video below
Understanding Palliative Care
By: Dr. Aldebra Schroll
It started with a fall. My father, nearing ninety tripped and broke his hip. Thus started a months long medical odyssey for my family. I was thrust into the role of caregiver.
As a family doctor and palliative specialist, I was familiar with the critical role of family caregivers. I started to haunt the halls of hospitals as a “civilian” seeing medicine from another perspective.
Dad had surgery then the assortment of complications that often follow an injury of this magnitude. During one hospitalization, he was transferred three hours from home to a teaching facility where he received multiple consults from a variety of departments.
When I arrived, he was delirious, reaching for things unseen to us. A neurologist was consulted, I reviewed the medications, suggested we stop one that I knew was associated with this behavior and it resolved.
There was a large medical team with a hospitalist, neurologist, cardiologist, urologist and physical therapist. Interestingly, the one consultant he did not get was for palliative care, my area of specialty and indicated for those who suffer traumatic, life changing injuries.
Mother was overwhelmed trying to keep track of everyone and their respective roles. I often found myself asking “how do families do this?”
What to Know About Palliative Care
Assisting patients and families to navigate our complex medical system is the role of Palliative Care; a specialized service for any age, any stage of serious and chronic illness.
The emphasis is on individualized care, symptom management to enhance quality of life, and to address the stress of illness.
Treatment is centered on the whole patient, mind, body and spirit. Specialty services are provided by an interdisciplinary team of trained experts including physicians, nursing, social workers and chaplains who focus on multiple domains of care, starting with the physical status and including psychological, social, spiritual and cultural issues.
Together the team provides whole person care. Patients may continue curative treatments such as chemotherapy, radiation or surgeries. Current recommendations are to introduce palliative early in the course of serious illness not waiting for a crisis.
Hospice care is palliative care for patients with a terminal diagnosis. Hospice treatment is focused on symptom management to allow for a natural death. The place of care is usually in the home, skilled nursing or assisted living facility; although larger urban areas are more likely to have a dedicated hospice facility.
Professional Perspectives
In my work, I think of the unit of care as the family because serious illness impacts the whole family. Often there are adjustments in the roles within the family. Family caregivers play an integral often underappreciated part in the patient’s health. The palliative care team offers expert communication with an emphasis on patient priorities. Early consultation provides the time to develop a rapport, get conversations started, and elicit the treatment preferences. Palliative care offers support for both the patient and their family.
After my father’s fall, my parents relocated near me so I could keep a closer eye on their needs. My world suddenly changed but not nearly as much as theirs. Only a few years ago, Dad had been skiing, playing golf, jogging, even competing in the Senior Olympics. The fall left him wheelchair bound.
Personal Mission
Our family’s experience only served to confirm my commitment to this work; being there for other families as they walk this path is my role. I have long thought that listening is among the most important treatments we provide in medicine; to validate someone’s experiences, feelings and perspectives is healing. Palliative care is truly person-centered care.
About Dr. Schroll Board certified in Family Medicine and Hospice/ Palliative Care, with over a decade of experience working with patients and families facing serious, life threatening and terminal illness; including inpatient/ home hospice and palliative inpatient consult service. Consultant/ trainer in serious illness discussions, advanced care planning, symptom management, end of life care; with a passion for teaching others in the field of palliative care.
I would love to hear your experiences with palliative care services – or lack thereof.
Have you had a doctor or hospital representative discuss palliative care with you?
Now that you have some understanding of this care, how likely is it you will request services from your care team?
Do you have a personal story worth sharing? Let us hear from you.
*Note: Keeping It REAL Caregiving extends a huge Thank You to Dr. Schroll for her expertise. And, I would like to express how thankful I am for the KIRC community. If you are not already a member, please consider subscribing. Both free and paid options are available to support our efforts.
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Until next time~
Julia
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