Living Your Best Life, for the Rest of Your Life

“Mention palliative care and many patients aren’t aware of what it means, or they think it’s just for patients with cancer or those who are dying,” comments Madeline ‘Maddie’ Steffens, RN, palliative care nurse coordinator, University of Maryland Shore Medical Center at Chestertown. Offered at all three of UM Shore Regional Health’s medical centers (Dorchester and Easton as well as Chestertown), and through its home care and hospice services, palliative care focuses on alleviating pain and easing discomfort and other symptoms associated with life-limiting illnesses such as cancer, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), liver disease, diabetes and advanced dementia.

In 2012, Steffens played a key role in launching UMSMC at Chestertown’s palliative care program, which is now known as the QuILT Program. Says Steffens, “We wanted to give our team a meaningful name, so we decided on ‘QuILT,’ which stands for Quality in Life Team. A quilt is created with pieces of fabric resulting in a warm and comforting cover. Our team is like a quilt, representing a multidisciplinary group of specially trained health care professionals working together to improve the quality of life for patients and their families.”

The QuILT palliative care team includes nurses, a physician, pharmacists, dieticians, social workers, case managers/discharge planners, hospice/home health nurses and staff, and the medical center’s chaplain. “We provide treatment that not only addresses patients’ physical needs, but also emotional, social and spiritual needs,” explains Steffens. “Most important, we help them find comfort regardless of their diagnosis or condition.”

In most cases, patients are identified as possible candidates for palliative care services by the nurses and physicians caring for them in hospitals and nursing/rehabilitation centers. Patients and families can request to talk to a palliative care team member, too. “When I meet with a patient, I provide information about the treatment options the physician has proposed. Then the patient can make the best decision based on his or her individual needs and wishes,” Steffens explains.
UMSMC at Chestertown’s palliative care physician is David Knutson, MD. Knutson has more than 40 years dedicated to nephrology and internal medicine, including the past eight years practicing in Chestertown. In his view, helping patients understand their options — and how they can improve their quality of life — is very important. “When I was asked to be the palliative care physician for the Chestertown-area program, I was excited to become part of the Quality in Life Team,” Knutson recalls.

The program is directed by Lakshmi Vaidyanathan, MD, who also serves as UM Shore Regional Health’s medical director for hospice services. “Dr. Vaidyanathan is a dynamic physician who always stresses that patients deserve care tailored to serve their needs — and that palliative care is about living your best life regardless of how much time you have left,” says Knutson.

Kent County and its environs are home to an aging population, and many patients seeking alternatives to traditional curative approaches to care are seniors. However, since the palliative care program was formerly inaugurated, the team is seeing more middle-aged patients when they are first diagnosed with a chronic disease such as CHF, COPD, diabetes and cancer.

“Our palliative care program is relatively small and we are in constant communication with each other and with the patient’s primary care physician, so everyone is on the same page,” Knutson says. “This ensures that our patients are receiving the most appropriate treatments throughout the duration of their care.”

Another member of the team is Katie Davis, RN, CHPN, the transitional care coach for UM Chester River Home Care & Hospice in Chestertown. True to her title, Davis coaches her patients, their families and caregivers on how to manage medications, monitor symptoms, and avoid side effects. She also provides guidance on what they can do to achieve optimal health and how to modify their home environment to make it safer so they can avoid repeated trips to the Emergency Department and costly hospital stays.

When a patient is discharged from the hospital, Davis makes sure the correct prescriptions are filled and that a follow-up appointment is scheduled with the primary physician. “Patients usually do best in their own surroundings, so I empower them so they can stay at home. I check in every week to make sure they are taking their medications and seeing their doctor,” she says.

One patient who is a true testament to the QuILT palliative care program is Margaret Newnam. As her daughter, Barbara Rice explains, “At this time last year, we thought that Mother was at the point of no return and that she wasn’t going to live to see another holiday season.” For the previous 25 years, Newnam had experienced health challenges including open heart surgery, colon cancer, an autoimmune disorder and heart failure. In September of 2012, she was transported by ambulance from her hairdresser to the local hospital, UMSMC at Chestertown, where she was admitted and remained for several days before she was transferred to University of Maryland Shore Nursing & Rehabilitation Center at Chestertown.

After two more hospitalizations and a further decline in her health, the family felt a different approach was needed. “It was between Thanksgiving and Christmas when we started talking to Maddie Steffens about palliative care,” remembers Rice. “Mom was in pain and uncomfortable, and my sister and I didn’t want to see her suffering. Our mom is a survivor, she’s a fighter, but she didn’t want to keep going back and forth between the hospital and rehab.”

Mrs. Newnam made the decision herself on Christmas Day and went home on December 30, 2012 under palliative and hospice care. Once home, she needed 24/7 care, yet exhibited an amazing attitude. Rice recalls, “My sister and I will never forget when our mom asked, ‘Does anyone graduate from hospice?’”As time went by, Mrs. Newnam’s tenacity and positive attitude answered that question — she was eventually withdrawn from hospice due to significant improvement in her health.

Says Rice, “Mom was receiving the best care and she had such great caregivers — her primary care physician, the hospital nurses, her at-home caregivers and the hospice nurses and staff.”

The fact that palliative and hospice care did not give up on her gave her the encouragement she needed to not give up herself. One year later, Margaret Newnam continues to surpass expectations, doing well at home with continued palliative care.

Thanks to the generous support of the Chester River Hospital Auxiliary, UMSMC at Chestertown recently opened a designated palliative care suite that includes a private patient room and a family area with a small kitchen and other amenities. UM Shore Medical Centers at both Dorchester and Easton also have similarly-designed suites for palliative care. These special accommodations enable family members and loved ones to be present day and night. Steffens stresses, however, that a patient doesn’t need to be in the suite to receive palliative care — it can be provided in other areas of the hospital, in a skilled nursing facility or at home.

In cases where the patient’s condition declines and it appears that transitioning to hospice care should be considered, the palliative care team offers guidance on sensitive subjects such as long-term pain control, death and dying, and other end-of-life issues.

For more information about the QuILT palliative care program, contact Maddie Steffens, RN, 410-778-3300. Information about palliative care treatment available through UM Shore Medical Centers at Dorchester or Easton may be obtained by calling Michele Williams, MSN, BSN, RN-BC, OCN, CHPN, palliative care specialist and clinical coordinator, 410-822-1000, ext. 5881.