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Palliative care team sets national example in videos

Helen Adams | | August 8, 2016

Photos by Sarah Pack
Jeremy Rowan prepares to videotape social workers Kate Rowan, center, and Mary Catherine Dubois while ELNEC's Polly Mazanec, right, discusses their plans. 

The care that went into making a baby girl’s last hours of life as comfortable as possible shows why the MUSC Health Palliative Care Program is being featured in training videos that will be seen across the U.S. and beyond.

Nurse practitioner Hanna Epstein described the little girl’s situation. “Just last week, we brought a big bed into the neonatal intensive care unit. The parents were able to get into bed together and hold this baby,” she said.

“The three-year-old sibling was looking on, and we got amazing pictures. Just thinking of things to make those final moments mean something. At the end of the day, these families are walking out of the hospital without a baby. And that’s the hardest part of all of this for them.”

Nurse practitioner Hanna Epstein 
Nurse practitioner Hanna Epstein says there's a great need for more people to work in the field of palliative care. 

Pam Malloy, who directs the End-of-Life Nursing Education Consortium, said that kind of care helps make the MUSC Health Palliative Care Program one of the best in the nation. That’s why its doctors, nurses and social workers have been asked to appear in educational videos for ELNEC about palliative care. The target audience is undergraduate nursing students who might be interested in working in the field.

“MUSC is really taking a stand to say, ‘We want to make sure we take good care of patients with serious illness, supporting them and their families with great dignity and compassion and care,’” Malloy said.

Palliative care is specialized treatment designed to ease suffering and improve the quality of life for patients dealing with chronic or life-threatening medical conditions. Their families are cared for too, as they cope with the emotions and challenges that come with having a seriously ill loved one.

The training videos, funded with a grant from the Cambia Health Foundation, will be available for free for nursing schools in four target states the foundation works with: Oregon, Washington, Idaho and Utah. The videos will be available to nursing schools elsewhere for a fee. “It’s very, very reasonable,” Malloy said, “and information is on the ELNEC website.”

That kind of information is in higher demand than it used to be. Palliative care is a rapidly growing medical specialty as more and more hospitals recognize the importance of not just taking care of patients’ medical needs but also making them and their families as comfortable and happy as possible.

Polly Mazanec, Mary Catherine Dubois 
Mazanec and Dubois discuss Five Wishes, the most widely used living will or advance directive in the country. 

MUSC Health recently expanded its palliative care program from just a couple of people to a team of 16 specialists, with two more doctors on the way. It’s also bringing in new pain management technology, including a device called a scrambler that helps ease nerve pain. 

Patrick Coyne directs the program and likes the idea of sharing his team’s experience with others who can benefit from it. “There’s a ton of data demonstrating that health care providers don’t have enough education in pain and symptom management and life threatening illnesses. The videos are a tool to help with that.”

Topics covered in the videos include what it's like to care for a child who is dying, how to do a pain assessment, how to report a patient's pain assessment to a doctor, how to help a patient who's having a spiritual crisis and how to assess patient's depression. The palliative care team also discussed helping patients who have received bad news or ask difficult questions.

Epstein, who specializes in pediatric palliative care, used her time in front of the video camera to give an overview of what her work involves. “A big part of what I talked about was end of life care and what that’s like as a practitioner, taking care of these patients. I feel like the most important thing I came away with is how humbling this job is.”

Other people appearing in the videos include social workers Kate Rogers and Mary Catherine Dubois. Rogers talked about the importance of helping patients and families figure out what kind of care they want. If a patient is in a persistent vegetative state, for example, life support may be continued or withdrawn depending on the wishes of the family.

Dubois talked about helping families make good memories during a loved one’s final days, celebrating the time they have together. She also talked about the different approaches required for patients depending on their age. 

“When we have a 20 year old who has a life-limiting illness, we’re usually dealing with parents and siblings who are grieving the loss of the future of this young person who perhaps is in college and had great dreams and was about to have those dreams come through.”

Elderly patients in palliative care and their families have different needs, Dubois said. Children and grandchildren may be involved.

Epstein, the nurse practitioner who works in MUSC Children’s Hospital, hopes people who see the videos get a realistic view of palliative care and some come away inspired. “People who want to do this kind of work, we need more of you.”

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