If you missed the 2017 Global Genes Patient Summit’s breakout session Strengthening your Care & Support Team, Home Team Advantage: How to Arrange for Palliative Care, we’re here to fill you in!
The session was lead by Kimberly Bower, M.D. Chief of Palliative Medicine, Rady Children’s Hospital-San Diego, Robin Short, RB, Home Supportive Care Coordinator, Supportive Care/Palliative Medicine, Rady Children’s Hospital-San Diego, and Caroline Cheung, a Parent Advocate whose son receives palliative care.
Dr. Bower began by asking the audience what their emotional reaction to the word “palliative” was. The responses varied, from “sadness” to “relief”. Many people associate the word palliative with grief, fear, or hopelessness. Dr. Bower wanted to change this perception, encourage people to have an open mind, and understand the extra level of support that palliative care can offer patients and their families. Dr. Bower wanted the audience to understand what it would be like for someone you love to receive palliative care or to receive it yourself.
“Palliative care should be demanded, not feared, it should add support, and make parents and patients feel empowered.” – Dr. Bower
Palliative care is centered around the patient and family being listened to. A care plan should be specialized for each individual, built around what the patient and family’s goals are and what they hope to achieve. Care is holistic, taking more into account than just the physical effects of an illness.
It is easy for families to become overwhelmed when caring for a loved one living with a rare disease. Rare patients are often complex and have several different types of medical professionals that they see. A palliative care team can act as a bit of a buffer and liaison between all different medical avenues, and add consistency and continuity of care for the patient. The same palliative care team will be there for your family regardless if you’re in your home or in the hospital. Visits from your team can range from once a week to once every two months, but they should be accessible 24//7.
Palliative care can help avoid unnecessary ER visits and keep kids at home and away from hospital bacteria. This is because the continued care from the team can help manage symptoms as they come up and keep them from getting bad enough that a trip to the hospital is necessary.
Your team can help you weigh the burdens vs benefits of treatment options and identify community based resources you can utilize.
Palliative care has been shown to decrease overall stress levels for caregivers. Patients can have their number of days spent in the hospital per month reduced by up to 50%. At Rady’s children’s hospital’s palliative care program it was reported that patients experienced a 36% decrease in ER visits with palliative care and 56% decrease in days spent in the hospital.
Palliative care is meant to help manage symptoms but also improve overall quality of life. Ms. Short shared a quote, stating that the goal is to “add life to a child’s years, not just years to a child’s life.”
So who should receive palliative care?
Any child who has a serious illness that could limit his or her life should have access to palliative care. Many people associate palliative care with cancer patients, but statistically, the majority are people living with genetic/congenital disorders, and then neuromuscular disorders.
What’s the difference between palliative care and hospice?
Hospice is a sub category of palliative care. Hospice is a specific type of palliative care for patients who have a life expectancy of six months or less.
When do people get palliative care?
People tend to receive palliative care when symptoms begin to worsen and present themselves more consistently.
Unfortunately, not everyone has access to palliative care due to a limited number of programs across the country and issues regarding insurance reimbursement. Section 2302 of the patient protection and affordable care act required that children receiving palliative cannot be restricted from pursuing curative treatments at the same time. This opened the doors for more people to utilize palliative care, because no parent wants to feel like they’re giving up on their child improving.
Mrs. Cheung, a parent of a child who is receiving palliative care, shared her and her son’s experience. She also had a “doom and gloom” initial impression of palliative care. She initially didn’t want it because it felt like it was an acceptance that her son would get worse and not better. At the end of the session she remarked,
“In hindsight, I wish I’d gotten palliative care earlier. Until we met our palliative care team no one had asked us how we felt about treatment or what we wanted.”
What are your thoughts about palliative care? Share your experiences and your hopes with the Patient Worthy community!