Easing the pain
The Palliative Care Team attends to physical and emotional symptoms
Palliative care physician Stephanie Grossman and Chaplain Sandra Schaap are on 10 E, a surgical unit at Emory University Hospital, to visit a familiar patient. They slip on yellow protective gowns and enter the room of Ersella McMath, a thirty-two-year-old mother of two from Marietta, who has had severe Crohn’s disease for thirteen years.
It’s the Friday before Memorial Day, and several Emory University Hospital patients need to be seen by the palliative care team before the holiday weekend.
McMath’s pain management is complicated. Much of her small intestine has been removed because of Crohn’s, a chronic inflammatory disease of the digestive tract, so she can’t absorb much below her stomach. Short-acting oral medications or intravenous drugs are her main options.
Because McMath has spent so much time in the hospital—she has had twenty-four operations since her diagnosis in 1994—she has received pain control predominantly through IV medications. The Palliative Care team has been switching her to oral medications so she can more easily manage at home.
A tranquil, thin woman who looks ten years younger than her age, McMath lies propped up on three pillows in a room decorated with teddy bears and photos of her children, her dog, and her fiancé.
She is understandably worried about the medication switch: Will her pain return?
Grossman and Schaap, who often visit patients together, have grown quite fond of McMath.
Schaap has been teaching her sign language as a fun exercise to try to ease some of the pain she’s been having in her hands—one of many symptoms of her disease—and they greet each other by practicing the finger spellings for “dog” and “cat.”
A dozen DVDs are stacked beside the TV (Zorro, Must Love Dogs, The Lake House) for “movie night” Fridays, when her fifteen-year-old daughter and thirteen-year-old son take turns spending the night with her in her hospital room.
“Sometimes, people—even our colleagues inside the hospital—think that palliative care is only for terminal cases,” says Grossman. “This is the other side of what we do: pain and symptom management for chronic diseases.”
McMath says her pain varies from daily discomfort to “indescribable—worse than labor.” Finding the right blend of medication, she says, helps her in many ways.
“I don’t have to try to hide my facial expressions from my kids,” she says. “Kids can always tell. They know when I’m in a lot of pain. I sometimes whimper or whine in my sleep. My children will give me massages. When I’m home I still do the same for them. My daughter always says, ‘Mama, you always know how to make me feel better.’ I will be glad to get back home to be able to do that.”
The Palliative Care Team, established in November 2005 at Emory and Crawford Long hospitals, operates out of a small, spartan office in Emory Hospital’s annex that it shares with the hospitalists. The team consists of physicians Grossman and Melissa Mahoney; staff chaplain Schaap; clinical nurse specialist Donna Arena; and nurse-practitioner Debbie Gunter 80MN.
“We see patients of all ages, from seventeen to 103,” says Grossman, a calm, soft-spoken doctor with an easy smile who became board-certified in palliative care after learning about the relatively new discipline.
The team addresses every aspect of a patient’s pain—physical, spiritual, and emotional—known as “total pain” in palliative care jargon. “It’s a holistic approach to medicine,” says Grossman. “We take into account the entire person, not just one or two organs. Palliative care is about caring catching up with technology.”
They might recommend antidepressants or antianxiety medications, counsel a dying patient about lingering regrets, or help to transition patients to long-term care in a nursing home or hospice.
Team members also act as educators, especially in terminal cases when patients and their families are trying to decide which path of care to follow: Feeding tube? Ventilator? IV nutrition? Aggressive chemotherapy?
“We don’t go in with an agenda,” says Grossman. “We discuss the medical facts, and the impact of a decision on the quality versus quantity of life. For instance, does the family know that difficulty swallowing and decreased intake of food is a natural progression of dementia and may signal the beginning of the dying process?”
Being honest with terminally ill patients and their families is crucial, says Gunter, who lectures on palliative and end-of-life care for the nurse-practitioner program.
“How can anyone know it is the last stage of their life if we’re not really telling them?” she says. “If they know, they may choose to do something completely different. There are always choices.”
She remembers, a few weeks ago, telling an elderly woman that it would be fine if she got into the hospital bed with her dying husband, to whom she had been married for more than sixty years. “The daughter looked at her mom and said, ‘See, I told you.’ The wife admitted that she hadn’t known if this was allowed, or what the nurse might think.”
But after she was granted permission, she spent her husband’s last night beside him, placing his arm around her. “She said she felt as if he was holding her,” Gunter recalls.
Today, several other patients also need to see the palliative care team. A middle-aged woman, newly diagnosed with terminal cancer, is in a lot of pain and will be undergoing palliative chemotherapy and treatment for nausea. An elderly gentleman—a former doctor—has late-stage cardiovascular disease after experiencing several heart attacks, and must decide whether to continue aggressive treatment or pursue a nursing home or hospice placement. A woman with end-stage liver cancer is ready to fill out a do-not-resuscitate order and enroll in hospice.
The palliative care team will adjust medication schedules, set up family meetings and—perhaps most importantly—listen to the patients.
Palliative care physicians and chaplains often visit patients together.
“I don’t have the background Sandra does to start talking about their spirituality,” says Grossman. “If you don’t ask, you miss a large piece of who they are and the reasons they are making certain decisions. I’ve been with patients who aren’t talking, and Sandra will say a familiar prayer, and they will start mouthing the words along with her.”
Schaap, who is from Groningen in the Netherlands, came to Emory for a year of clinical pastoral education in 2005 then stayed as the dedicated palliative care chaplain. She connects with patients through listening and talking, but also through prayer, games, stories, and songs.
“I’ll have patients start singing with me. ‘This Little Light of Mine,’ is a favorite,’ ” says Schaap. “One patient’s daughter told me that her mother used to sing, ‘You are my Sunshine’ when she was a child, so I sang it to her while she was dying.”
While telling the story, Schaap leans back in her chair and, in a beautiful, clear voice, softly sings, “You are my sunshine, my only sunshine, you make me happy, when skies are grey . . .”
She recalls other visits with patients during their final hours, when family gathers around their bedside.
“There is so much laughter in those rooms,” she says. “We’ll say, ‘Tell us what kind of man was he?’ And, ‘Do you remember any stories about him?’ Soon the family will start talking to each other and forget we are there.”—M.J.L.