Do you know what palliative care is — and what it can do for you?

A few years ago, Janina Birtolo was in constant discomfort and anxiety, struggling to manage her emphysema symptoms. By late 2022, her lung function had deteriorated to 23%. 

When Janina brought all of this up with her primary care doctor that fall, she suggested that she refer Janina to palliative care. Janina was shocked. 

“I’d always thought palliative care was only for hospice patients, and I knew from my pulmonologist that I likely still had more than six months to live,” Janina shares. “I also thought palliative care was about pain relief, and I wasn’t in any pain.”

Her provider explained that palliative care is open to anyone dealing with a serious illness, can be used concurrently with other treatments, and deals with much more than physical pain. 

“It turned out to be a godsend,” Janina says. 

What is palliative care? 

In a recent article in The Dallas Examiner, Dr. Selena Seabrooks describes how few people — either individuals and families or healthcare professionals — really understand the benefits of palliative care for anyone dealing with serious illness. 

“The need for palliative care is high among cancer patients and people with chronic, life-limiting conditions — especially for Black, Hispanic and Asian patients,” Seabrooks writes. “However, palliative care is still often associated only with end-of-life care or cancer treatment.”

Palliative care helps people with serious illness feel better and is for people of any age and at any stage of serious illness. It focuses on: 

• Managing symptoms
• Pain relief
• Improving quality of life
• Supporting family and caregivers

Palliative care teams are comfort specialists. Their entire focus is on helping you feel better and live as fully as possible — whatever treatment path you’re on. They may include doctors, nurses, social workers, spiritual counselors, or chaplains. 

Palliative care teams work with your other providers to support: 

• Family meetings and counselling for you and your loved ones
• Talking about your goals and priorities, and making sure your care matches them
• Help with symptoms like pain, depression, anxiety, fatigue, shortness of breath, constipation, nausea, low appetite, and difficulty sleeping
• Coordinating care across all your providers

For people nearing the end of life, palliative care can lead to a better experience because palliative care specialists:

• Help patients and their families understand their treatment options, including the benefits and downsides of each choice
• Make sure the patient’s care matches what the whole healthcare team is working toward
• Help patients set up important paperwork, like naming someone to make decisions for them (a medical proxy), writing down their care wishes (an advance directive), and deciding on resuscitation preferences

Palliative care is available in hospitals, skilled nursing facilities, assisted living and other residential care facilities, specialized clinics, and in the home. But what’s available and what services are offered can look very different depending on where you live or where you receive care. If you’re unsure, you can ask for palliative care directly — or ask your health care team, “What services are available to me that would prioritize my comfort?”

Medicare, Medicaid, the Department of Veterans Affairs, and many health insurance providers cover some palliative care services. 

“Getting my life back” 

Once Janina Birtolo was referred to palliative care, she met with an advanced practice registered nurse (APRN), who took her vitals and history and explained how the program worked. The APRN was knowledgeable and empathetic, and her recommendations improved Janina’s sleep, anxiety, and gastrointestinal problems. 

Next, the APRN set Janina up with home visits with a social worker and a spiritual advisor. 

“Sometimes, all you need is someone to talk with,” Janina says. “That proved the case for me. These two team members helped me restore my perspective and my will to go on. My loving, supportive husband was included in as many of these discussions as he and I wanted.”

Because Janina’s palliative care was covered by her Medicare plan, it didn’t cost her anything. 

In December 2022, Janina had surgery to place endobronchial valves in her lung. The surgery was a success: Janina could breathe deeply again for the first time in months. 

Although Janina no longer needs palliative care now, she says, “I will always carry in my heart the folks at palliative care and how much they helped me when I desperately needed it.”

Learn more about the work Compassion & Choices is doing to raise awareness about and improve access to palliative care through public education and federal policy change.