Care Beyond Healing
Mar 26, 2020 07:00AM
By MED Magazine
By Alex Strauss
Amanda Sedlacek’s passion for palliative medicine has its roots in her childhood on a farm in Tabor, South Dakota.
“It is a place where people tend to take care of family as they age,” she says. As a child, Sedlacek spent time helping to care for her aging grandmother who passed away when she was in first grade.
“I stayed home with my grandmother sometimes. I did things like help comb her hair,” remembers Sedlacek, whose mother was a nurse. “My family had to deal with some really hard end-of-life issues and I remember watching how my grandmother changed as a person as she became ill.”
The experience ultimately drew Dr. Sedlacek to internal medicine where she saw a chance to care for “the whole person and the whole body”, both in and out of the hospital. She earned her DO from Des Moines University of Osteopathic Medicine and completed her residency in Internal Medicine at St. Joseph Warren Hospital in Youngstown, Ohio.
“After my first year of training, one of our program directors told me he thought I would enjoy hospice medicine,” she says. Within a month of working with hospice inpatients in Youngstown, Sedlacek’s mind was made up. She completed a fellowship in Palliative and Hospice Medicine at Summa Health in Akron, Ohio and moved back to South Dakota last summer with her growing family. She now works at Yankton Medical Clinic where palliative medicine makes up about half of her internal medicine practice.
“I feel like it is the greatest blessing to take care of people at the end of life,” she says. “It is a time of very raw human emotions. Not just grief and sadness, but also a lot of love. I feel fortunate that I can help people go through this.”
Understanding Palliative Medicine
As a board-certified palliative medicine specialist, one of Dr. Sedlacek’s first duties was to help other professionals understand the nuances of her role and exactly how she can support them in the care of their sickest patients.
“Palliative and Hospice Medicine works alongside the specialty team to focus on the patient’s and family’s understanding of the disease process, their prognosis, and their course of treatment,” explains Sedlacek.
This can include helping to manage symptoms such as pain, nausea, dyspnea, depression, anxiety, constipation, or diarrhea. But it can also extend to advanced care planning, lining up home services, providing medication review and recommendations and assisting with bereavement and psychosocial support.
Upon referral, Dr. Sedlacek consults with patients for an hour to get a sense for what she calls “The Three W’s” - what they are wishing for, what they are worried about, and what they are wondering.
“During our time together, we talk about all of these things,” she says. “Dying is something people don’t talk about, so it is something people tend to be very worried about. It can make a huge difference to have a provider looking at the whole trajectory of their illness and addressing their concerns. It is a really intimate part of their lives.”
The Complexities of Dying
Caring for dying patients is not easy for any provider. Emotions, stress, and confusion may be high and there may be worried family members in the picture, as well. In addition, Sedlacek says, a dying person may not respond to medication as expected. Whereas a fentanyl patch might make sense for another patient in pain, the fact that the drug lasts for 72 hours can be a problem for patients who may have less time to live. Part of Sedlacek’s job is to help her colleagues navigate this complex territory.
“As a person declines, their need for an opioid may increase or decrease and 72 hours may be too long,” she says. “In a case like that, I would transition to something more short-acting”
Issues such as a patient’s fluctuating BMI may also impact drug absorption. Even something as simple as the application of heating pads to alleviate musculoskeletal pain may increase the chance of accidental overdose through increased absorption.
“Dying isn’t as simple a process as people think,” says Sedlacek. “Metabolically, emotionally, even spirituality, it changes everything.”
Supporting Patients and Caregivers
One of the many ways Dr. Sedlacek helps dying patients and their families is through processes such as dignity therapy and life review.
“Some people feel like they have lost purpose in their lives when they are dying,” she says. “We take time to recap the important moments of their life and what they mean to them. This can be used with anyone, but it is often helpful with a dying person who might have younger children. We talk through gifts like notes or videos they could leave for their children, ways that they can continue to be a part of other people’s lives when they are gone.”
Parents who are losing a child may be guided through a memory-making process such as making a mold of the patient’s hand to help them through their grief later.
But patients and their caregivers are not the only ones who can benefit from Dr. Sedlacek’s expertise. She is also trained to help other healthcare professionals work through their own stress and anxiety as they care for dying patients.
“Taking care of very ill patients and their psychosocial issues can be exhausting,” says Dr. Selacek. “Burnout is common, especially among those who are dealing with complex patients who may be coming in multiple times a week. They are dealing with emotions and trauma and grief. Even administrators have to deal with this and it does impact them.”
Support can take the form of journaling, intentional self-care, group work, or even creating art or poetry. Dr. Sedlacek says this kind of caregiver support work will be especially important when the new Maternal Fetal Loss program, a collaboration between YMC and Avera Sacred Heart Hospital, launches later this year.
“With the right support, this work can help us grow personally, professionally, and even academically,” she says. “This is how people find great gratitude and love for their work.”