Palliative Care: Helping Patients Live Their Best Lives

Lynn’s husband Steve was diabetic and diagnosed with end stage renal disease 11 years ago. Without warning, Steve’s condition turned critical three years ago. Desperate for guidance and strength, Lynn was connected to April and the Palliative Care team at Missouri Baptist Medical Center.

Where do we go from here?

“Steve had been very sick for many years when I first met him and Lynn,” said April Schillinger, RN, CHPN, a Palliative Care team member for the past 12 years. “They were still trying to hang on, and Lynn was trying to hold onto him. Lynn understood the gravity of the situation a little more than Steve did, and when we met she asked me, ‘What are the options, and is he going to get home?’”

Understanding Palliative Care

The MoBap Palliative Care Team: Beth Foster, BSN, RN; Katharine Ponzillo, MD; and April Schillinger, RN, CHPN.

Palliative Care provides assistance to patients of any age who are living with a chronic or serious illness. Missouri Baptist was one of the first area hospitals to offer Palliative Care.

Palliative Care can help with managing symptoms related to illnesses, such as:

• Pain    
• Depression and Anxiety                     
• Fatigue           
• Caregiver stress
• Nausea and Vomiting                        
• Spiritual concerns      
• Bowel issues   
• Coping skills
• Shortness of breath

Is Palliative Care the same as Hospice?

“The largest and most common misconception about Palliative Care is that it’s the same as Hospice care,” said Kate Ponzillo, MD, Palliative Care Medical Director. “Hospice care is intended when a chronic illness has led to a six-month or less prognosis for patients with a terminal illness who are no longer receiving curative or life-prolonging treatment. Palliative Care grew out of hospice care and is a service focused on helping patients live their best lives.”

Patients who suffer from serious illnesses, such as heart, kidney or lung disease, dementia, Parkinson’s or other chronic conditions may find Palliative Care helpful at any stage of their illness, while also receiving other medical care to overcome or control the illness.

“Many people in the community believe that Palliative Care is just for cancer patients, but it’s for patients who are diagnosed with an illness that will essentially never go away and one that will tend to disrupt their life from symptoms or from the symptoms of the treatments that may prolong their life,” said Dr. Ponzillo, who recently began an outpatient service to meet the growing needs of patients and families that need palliative care outside of a hospital stay.

Supporting Patients and Families

Beth Foster, BSN, RN, another member of the team, explained why it’s essential to work with a family to understand how a patient is living. “We first ask how the patient is functioning, for example, getting to doctor’s appointments, managing at home, hours of sleep, eating, dressing and getting out to enjoy life,” Beth said.

“Then, we go back six months, and as a family begins to share, they become aware that life for their loved one may be changing, which can help a family realize that maybe it’s time to shift gears and change goals. If a patient has limited energy, we ask how they want to spend their time – either going to doctor appointments or an activity that may enhance their quality of life.”

“Many people with chronic illness need support from their family, and the family needs support from another layer because they’re struggling with their loved one’s illness that they can’t fix,” Beth said. “They don’t know what to do, so it helps give them some guidance and navigation.”

Partnering with the Medical Team

“Over time, we’ve seen a change in how other healthcare providers perceive the importance of Palliative Care,” said Dr. Ponzillo. “For selected cases, the cardiothoracic surgeons now involve our team before surgery to have us explore with the family the goals of the patient and what they are trying to achieve with the surgery.”

Remembering Steve

Steve and Lynn enjoyed their 18-year marriage to the fullest, spending time with family, including their five grandchildren, traveling, playing golf and watching movies. An Air Force veteran, Steve was a Hospice Chaplain.

Steve and Lynn

“In spite of everything that was wrong with Steve, he worked to live life to the fullest. He was determined,” Lynn said. “He always felt having a military background that he was on a mission and needed to complete the mission. It gave him added strength.” Steve underwent an amputation followed by years of dialysis. Three years ago, Steve’s condition became critical. Steve needed a high-risk surgery to repair blocked arteries in his heart.

“We didn’t think he would live through the weekend,” Lynn said. “That’s when I first met April who was wonderfully supportive during that time. She came every day and stayed in constant contact with us. She consoled me, walked me through procedures, heard my concerns and offered whatever support I needed from their team. Thankfully, the surgery was a success.”

Lynn and April would go on to build a supportive relationship. Steve returned to the hospital this past August, and April was there for the couple. She arranged for the medical team to meet with Steve and Lynn’s extended families. “I don’t know what went on behind the scenes, but I believe that happened because everybody seemed to be moving in absolute synchronicity,” said Lynn. Steve died August 7.

“As a Baptist Minister and a Hospice Chaplain, Steve was always teaching and at work in the world. By retelling our story, he is still at work,” said Lynn. “Perhaps someone else’s journey through the end of life will be more comfortable and they will not be alone.”