Living well with serious illness: Toby’s palliative care story
When we go into the hospital, we want to be treated for whatever is ailing us. We also expect to be heard and validated.
When Toby Palma, a Las Vegas, Nevada woman in her early 40s, went into the emergency room several times complaining of severe pain all over her body, the doctors kept telling her it was a minor kidney infection.
“I knew it was something more,” says Toby. “The antibiotics they gave me weren’t doing anything for my pain but they kept sending me home because I looked healthy.”
After a year of doctor’s visits which left her without answers or pain relief, Toby was eventually referred to a team of specialists who took the time to get a full understanding of her symptoms. That medical team—called a palliative care team—then went to work to help Toby with the pain and stress she was dealing with. With a better understanding of what was troubling her, Toby’s primary doctors were able to make a proper diagnosis of Multiple Sclerosis (MS).
There is now one goal: To help Toby live the best life possible. This is Toby’s palliative care story.
Finding palliative care
Frustrated and debilitated to the point where she needed help getting out of bed, Toby was referred to the palliative care team at Sunrise Hospital and Medical Center in Las Vegas. Her doctors hoped that palliative care would take the time to get a better understanding of her issues. Toby’s family joined her for that initial visit.
“Our first job is always to give the patient and his or her family members a full understanding of how we can help,” says Leslie Hunter-Johnson, an advanced practice nurse who leads the palliative care team at Sunrise.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing relief from the symptoms, pain and stress of a serious illness. It will help you understand your disease and your treatment options and it will also help you, and your family, cope with the everyday challenges of living with a serious illness.
Palliative care wasn’t something on Toby’s radar when she arrived for that first visit. Before she was diagnosed, Toby had never been to the hospital for any issues. A self-described “type A personality,” she was living an active and productive life as a wife, mother of two sons and dedicated professional who helped children with special needs find the right services.
“I hardly ever got sick,” says Toby. “To not be able to do things or even get out of bed on certain days was especially hard for me because I just wasn’t used to ever slowing down.”
Palliative care and multiple sclerosis
It didn’t take long for Toby to embrace palliative care.
“Once I became a palliative care patient, it was like a whole new side of medicine was revealed to me. They were so compassionate, non-judging and empathetic, and they wanted to help. Not only with getting to the bottom of my pain, which is obviously a severe issue, but with my stress, with my family members – my mom, my husband and my kids,” says Toby.
In order to properly treat her ailments, Leslie and her palliative care team asked questions to get what they call “a full story.” The answers Toby gave the team eventually helped Toby’s primary care doctors to diagnose her with MS, a disease that affects the central nervous system. This includes the brain, spinal cord and optic nerves. MS can be hard to diagnose. This was especially true in Toby’s case.
“Nobody could see her pain and what she was going through. Palliative care however is a bridge for chronic illnesses, and we ride the storm with people. We are there to listen and respond according to what’s best for the patient,” explains Leslie.
Tackling the pain
While living with a serious illness is a challenge, palliative care can make a big difference. Some palliative care treatments for MS include medications and techniques to relieve muscle spasms, calm nerves and manage pain.
“Pain is very individual, and there are different types of pain. For Toby in particular, we gave her pain and symptom management to initially deal with stomach soreness and a tight feeling around her chest. From there, she experienced a lot of pain in her legs and back. As the illness has progressed, we have provided Toby with the proper pain medication to make her feel better on an ongoing basis,” says Leslie.
Pain medication, however, can have its own side effects. Because Toby has chosen to remain independent, she chooses medication that will address the symptoms but won’t keep her confined to her bed.
“As the disease progresses, we have to become more and more creative as to how we manage her pain. On days where she is less mobile, we make sure we call or speak via video chat to address the symptoms,” says Leslie.
Toby also receives periodic palliative care visits to her home which is especially helpful on days when she has trouble getting out of bed.
“I can’t explain how amazing it felt to finally have my pain addressed and treated. It changed everything for me. It was like a cloud was lifted,” says Toby. With the pain managed, emergency room visits for Toby have become a rare experience.
(Read: Palliative care helps patients avoid the emergency room)
Managing the stress and setting goals
Receiving a diagnosis of multiple sclerosis can be very shocking. And adjusting to the symptoms of a progressive illness that takes a major toll on the body can also be very hard. Toby’s experience was no different.
“When your anxiety is high, you lose focus. It’s almost like a magnet on your brain where you can’t think clearly,” says Leslie.
To treat the stress, Leslie and the palliative care social worker sit with Toby to discuss her feelings and work alongside her so she stays focused on what she can control. This includes encouraging her to set small goals like taking a walk or visiting a relative so she stays motivated and healthy.
“You are still a person and you have this diagnosis, but the palliative care team is always asking me: ‘What do you want to do and what can we help with?’ Just having them ask things like that means so much.”
The palliative care team also meets with Toby’s family members to help them deal with their own stress and also help them learn how they can better support Toby as she does her best to manage the symptoms.
Several years after those frustrating ER visits, Toby’s pain is adequately managed and she has small goals in place to travel and stay active in spite of her illness. She says she can now finally focus on living a good life.
“You can’t express how important it is to feel heard. The palliative care team truly cares about what is going on with me and my family. I can’t imagine life without palliative care right now,” says Toby.
Toby says she also spends her time as a palliative care advocate, making sure patients just like her have access to this medical specialty.
If you or a loved one is facing MS or any other serious illness, ask your doctor for a referral to palliative care—the earlier the better. You can receive palliative care in the hospital, at an outpatient clinic and sometimes at home.
Although living with MS can be a difficult journey, palliative care can ease your burden and help you achieve the best possible quality of life. For more information, explore GetPalliativeCare.org. Take the quiz to find out if palliative care is right for you. And find providers in your area by visiting the Palliative Care Provider Directory