Treating pain and breathing challenges: Matt’s palliative care story
Matt is about to start another abstract painting. With classic rock music blasting in the background, he holds the brush between his lips, steadies his neck and presses the brush against the canvas.
A few months ago, Matt, 38, wouldn’t have believed you if you told him he’d be painting again. Fourteen years ago, a severe car accident left him paralyzed from the upper chest down. While his diaphragm wasn’t paralyzed in the accident, it was weakened significantly, which has caused Matt to have breathing problems that have grown progressively worse over time. Those issues coupled with severe nerve pain and the emotional stress of dealing with the traumatic events of the accident have been a daily struggle.
After a recent 13-week hospitalization for low oxygen saturation, Matt and his family asked if there was something more that could be done to help with the many symptoms involved with his physical issues.
They asked for palliative care.
Asking for help
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from symptoms and stress. The goal is to improve quality of life for both the patient and the family. Many palliative care patients have illnesses like cancer, congestive heart failure, diabetes or Alzheimer’s, but some—like Matt—receive palliative care to deal with issues relating to their physical limitations.
Matt’s stepmother Jane, a critical care nurse for nearly 40 years, is Matt’s primary caregiver. She knew about palliative care and how it can help manage symptoms and tackle stress, so she asked Matt’s doctors for a referral. She knew Matt needed help but felt that she and other family members could benefit from a team of specialists as well.
“I felt we needed that extra layer of support to help Matt with the symptoms but also to help us plan with the obstacles ahead,” says Jane.
Read: Three Ways Palliative Care Helps Caregivers
For 14 years, Jane has assisted Matt with daily tasks like using the bathroom or eating, and she has helped coordinate night nurses who tend to him while she is sleeping. As his health has declined with age and the breathing issues have worsened, she has done her best to keep up.
“She has been in my corner since day one,” says Matt of Jane. “She’s my biggest advocate and she isn’t afraid to be completely honest with me.”
During the recent hospitalization, Matt had many difficulties. Because of the oxygen issues, Matt developed pneumonia and had a hard time breathing. On Jane’s recommendation, Matt’s doctors connected them with a palliative care team.
Tackling the pain
Matt knows his life can’t go back to how it was before his accident, but he desperately wants to gain more independence and accomplish small things like getting out of the house. Pain medication that was prescribed to Matt in the past caused him constipation, so his doctors would either lower his dosages significantly or not prescribe them at all.
“This was an ongoing frustration for so many years,” says Matt. “I kept complaining of pain but not a lot was done to help.”
Palliative care specialists are specially trained to manage pain in complex situations like Matt’s. Matt’s palliative care physician, Dr. Kristin Edwards, says pain was the first thing she wanted to take care of.
“It became clear right away when we met that Matt’s pain was causing him to be emotionally stressed,” says Dr. Edwards. “It was keeping him from thinking in a forward manner.”
The palliative care team put a focus on finding the right balance of medication that can keep Matt from feeling severe pain but can also keep him from suffering from the side effects.
“What we do is a lot of trial and error. Managing pain is not one size fits all so we need to be creative and be willing to adjust things day to day until we find the right balance.”
Matt felt the positive effects right away.
“Just to be listened to and heard was the first thing” says Matt. “They heard me and asked questions until we found the balance we needed. When the pain went down, I just felt so much better physically and emotionally. It was like a huge cloud was lifted,” says Matt.
Helping with stress
Since the accident, Matt couldn’t help but relive the details of that day. While Matt was stopped in traffic, a tractor trailer wasn’t able to slow down before it collided with his car. Matt was injured immediately and he and his car were pinned underneath the trailer. Matt was also conscious the entire time. Since that day, high anxiety and panic attacks have kept Matt from enjoying a quality life.
“When we started talking to Matt, we knew immediately that even though so many years had gone by, he hadn’t processed his emotions surrounding the accident,” says Dr. Edwards.
To address the stress, the team’s palliative care social worker had many lengthy conversations with Matt that focused around his frustrations and fears. With his pain managed, Matt was finally more willing to open up more about his emotions. The result of those conversations was a diagnosis of post-traumatic stress disorder.
“Just having that diagnosis was so important for me. I finally knew what was going on and we could address it head on,” says Matt.
To tackle this issue, the palliative care team helped Matt by giving him coping skills like breathing techniques when he feels anxious, small goal-setting or techniques for processing stress. One example is what Matt calls the “hot air balloon method.”
“I think about all of problems I have and then picture them in a hot air balloon floating away. It helps me get out of my own head and put things into perspective,” says Matt.
While Matt has made a lot of progress, stress and anxiety are ongoing issues he faces every day. Knowing he can speak with the palliative care team has given him a crucial outlet on the harder days.
During the most recent hospital stay, Matt’s doctors grew concerned over his worsening respiratory issues. They suggested placing him on a ventilator either part time or permanently to keep his breathing regular. This was a major decision.
“Because Matt and I are very close, we have never had any issues communicating, but this time I felt that I didn’t want to influence his decision. Being on a ventilator can come with its own issues and I wanted him to be empowered to make his own choice,” says Jane.
Matt and Jane discussed the options with the palliative care team who helped educate Matt about what life looks like on a ventilator. They also gave him all the information needed to make an informed decision.
“One important thing we tell patients is that not every decision we make is permanent. For example, we can try a ventilator and see how it affects him and then make decisions down the road.”
Matt ultimately decided to try the ventilator for three hours a day as well as while he sleeps and is currently adjusting to his new routine.
“Palliative care put everything in front of us and let us decide together,” says Jane. “That was so important.”
With his pain managed and his stress under control, Matt is focused on setting small goals like getting outside.
“I’m so thankful that I went to palliative care because I feel supported and prepared. It’s really important to have people who listen and take initiative when you need help,” says Matt.
Matt tries to paint a little bit every day. Sometimes it takes him a few weeks to finish a piece, but just like his goals, he is taking things one step at a time.
To learn more about how palliative care can help you or a loved one, visit getpalliativecare.org.