The Impact of Palliative Care
When a patient recieves palliative care, it not only has an impact on him/her but also his/her family. The family for any patient receiving palliative care can be seen as a support team. Many ill patients at the end-of-life lose the ability to make medical decisions on their own, which is why family and close friends are often present to help make medical decisions.
The two stories below speak to how palliative care has had an impact on the lives of John Boscarino and Stephanie Brinson. John Boscarino was a patient who was the recipient of palliative care through his fight with cancer. Stephanie Brinson, whose child was born with Trisomy 18 (Edwards syndrome), experienced the benefits of palliative care after her daughter was also diagnosed with rare liver cancer. These two stories illustrate two different aspects of palliative care.
Stephanie Brinson- The Family Side of Palliative Care
Stephanie Brinson experienced the palliative care process with her new-born daughter Anna. Brinson found out about significant medical issues while she was 13 weeks pregnant with Anna. Brinson’s daughter was diagnosed with Trisomy 18 (Edwards Syndrome).
Doctors on staff explained to Stephanie that newborns diagnosed with Trisomy 18 are usually not carried to full term. Five percent of newborns diagnosed with Trisomy 18 do not live past one year.
“I knew way ahead of time that there’s a chance that she wouldn't be born alive. So when I was 32 weeks pregnant I went into labor early and she was born weighing one pound, 12.6 ounces. So that’s where it all began.”
Once Stephanie gave birth, Anna was in critical condition. Although many expected Anna not to make it past one day, she proved all the doubters wrong and she lived for nine months and 10 days.
After three months of intensive care and nutritional aid, Anna gained weight. Following this period, Stephanie's focus changed to trying to get her daughter home. During that time the NICU doctors recommended to Stephanie to place her daughter in palliative care.
Stephanie and newborn Anna
“So it started off with the palliative care person. I’m open to whatever resources they are going to give me, but I found the value in it towards the end right before my daughter came home for the first time at eight months old she was diagnosed with a rare liver cancer.”
Stephanie and Anna on a walk
The meetings Stephanie had with the doctors were extremely helpful since she was not aware of the benefits of palliative care. Health care providers on the palliative care team helped Stephanie by bringing up issues and questions that she was not aware of.
Two weeks later Anna was forced to return to the hospital. Once Anna went back, Stephanie decided to combine Anna’s palliative care treatment with her physical and respiratory therapy. She shared what changed her mind about utilizing palliative care:
“Most of the time I was at bedside. They have what’s called hands-on care. So every three hours the nurses are taking blood pressure, they’re doing temperature, they’re changing diapers, they’re doing feedings and so for me, that was the opportunity to take care of my daughter.”
Stephanie reading to Anna
Daily activities that Stephanie enjoyed with Anna included reading books, playing music and singing. UF Health Shands Hospital hosted activities for new parents that taught them how to take care of your baby at home.
These workshops helped Stephanie connect with other mothers. These interactions encouraged Stephanie to form bonds with other mothers who were going through something similar with their children. Those connections helped Stephanie create a support team that was outside of her doctors and family.
“It made death not so scary because I’m living in the moment. I’m living in the present. I’m not going to let the worries of tomorrow keep me from the joys of today.”
John Boscarino- Palliative Care Patient
John Boscarino is a stage IV cancer patient at UF Health Shands Hospital. After constant visits in the last two years, John can officially say he is cured. The road to recovery was not easy however and what helped John push through the pain was his faith. Thanks to being part of the palliative care process, John shared how it helped strengthen his relationship with God.
“Because of my faith, I believe I’m still here today. I've had a lot of injuries over the years, this has probably been the worst I’ve ever had to deal with. Cancer is nothing to play with and after two years of doctors and surgeries, chemotherapy and medications; having that faith, and my wife, of course, has gotten me through all that.”
John was not aware of palliative care prior to his seeking help. Just like many patients, John had his questions and doubts about how palliative care can benefit him. After many meetings with doctors, he was able to understand what his new life would be like, and set forth a plan that would ensure he maximized his quality of life.
“Having no knowledge and having it explained to me, now I can see. I understand, faith is pretty much the whole reason I’m healed I believe.”
Being part of the palliative care process helped John become more active again and change his outlook on life in a positive way. Palliative care teams are there to tailor the process to the patient’s needs. This type of active planning can motivate the patients to try to make a difference in their lives.
“It got me out of the house. After laying in hospital beds and of course my wife has to go to work every day to support me at this point it gave me a reason to get up off my bed, get in my car, and drive all the to Gainesville.”
Another element that factors into palliative care is a patient’s support team. A strong support group can make a difference for the patient mentally because it ensures the patient that they are not alone. This can vary from patient to patient, but for John, it was everything to him.
“Having that support from family, from friends, the church, financial institutions and of course all the people here at Shands are incredible. Without that support group, I wouldn’t have made it as far as I have. It would have been a lot easier to give up than it would be to fight.”
By keeping an open mind with palliative care, John was able to discuss any concerns or questions he had with his treatment. Having fear to talk about your feelings can get in the way of the overall improvement.
Palliative care has helped John talk about death and the dying process because he has been to the edge. He knows about the thoughts that run through one’s head when one thinks this might be it.
With palliative care, however, it transformed John's connection with his faith. He describes his complex experience in a very simple way:
“There’s really nothing to be fearful of. It can't hurt you, it can only help you.”