OFFERING CARE WHEN THERE'S NO CURE
By Angela Woodford

WHITNEY MAIN, RN in the Palliative Care Unit of VCU's Massey Cancer Center with patient Chris Gibbs

Palliative care is a relatively new field, but RNs in this specialty feel they're carrying out the first principle of ancient medicine: make the patient feel better. "Originally [physicians] were looking at how to manage symptoms – not what it all meant or how to cure it, but how to stop whatever it was that was hurting the person," said Laura Kollar, a palliative care RN at University of Virginia Health System in Charlottesville. "The history of nursing is the history of giving comfort."

Palliative care, which is one of the fastest-growing fields in medicine, began in the 1980s as a supplement to home-based hospice care. Palliative care is aimed at reducing the severity of disease symptoms, regardless of whether the patient is receiving separate care focused on curing the disease.

As Patrick Coyne, clinical director of palliative care at Virginia Commonwealth University's Massey Cancer Center in Richmond, explained, palliative care nurses focus on improving patients' quality of life.

Left: Laura Kollar, Palliative Care RN Right: Patrick Coyne, Clinical Director of Palliative care, VCU's Massey Cancer Center

"We're taking care of a population that may or may not be dying soon," Coyne explained. "Years ago people thought if you come here you were going to die, but if you come here you're really going to live."
Hospice patients may receive palliative care, but the two fields differ. Hospice is end-of-life care for someone who has six months or less to live. Palliative care is care for patients at any stage of a terminal illness such as cancer. It's also for those with major head injuries, stroke or simply chronic pain.

Also, palliative care can involve inpatient medical procedures. For example, Coyne said, palliative care can include surgery and medications to manage pain, blood transfusions for patients who suffer anemia and become short of breath and chemotherapy to shrink tumors so a patient can swallow food.

Coyne said years of working as a nurse in cancer pain management brought him to a realization. "I would run into 'I'm also short of breath' or 'I'm tired all the time,' " Coyne said. "And I started learning there's more we should be doing than just getting people out of pain. Why wait until the last few weeks of life? You should be comfortable while we're treating you."

Challenging, yet rewarding
VCU is one of the first hospitals in the state to have a designated palliative care unit. Started in 2000, the unit is designed to be home-like, with a kitchen where patients and families can cook, and visiting hours or the ages of guests are not restricted. Patients can even invite canine friends for a visit.

Coyne said the unit has hosted several weddings, graduations and bar mitzvahs. "There are a lot of things happening," he explained. "One day is never like another. There are days where it is absolutely very sad; but happy things balance it out."

Kollar said the only thing about a "typical day" at U.Va. is that there is no "typical day." Because she's frequently the charge nurse, Kollar's duties vary, and as with any job working with the terminally ill, her days are full of emotional ups and downs.

"Palliative care nurses have to be nonjudgmental and accepting," Kollar continued, "and not take offense easily, because people are at the worst part of their lives. It's a huge responsibility but such a blessing to be with people who are at this juncture of their lives."

Caring without judging
Kollar said she was drawn to palliative care by the opportunity to help patients on an emotional and spiritual level. While she's in a room to feed a patient or change sheets, the patient will often air his feelings. "[Nurses in palliative care] have more focus on supporting people spiritually and emotionally," Kollar said. "Sometimes you almost feel like a chaplain in that people are open to you when you're caring for them, and they tell you things they never tell anyone else because they know you'll support them and may be able to say something that gives them emotional relief … it's a kind of complete caring without judgment."

Kollar said a nurse she is mentoring once asked her, "Do you ever ask yourself why you went into this job? Do you ever question whether this was a good idea?"

Joyce Robinson, LPN with patient Shirley Ann House

Kollar said that, like most nursing positions, palliative care is stressful, but working with this particular patient population has also enriched her life.

"As a nurse you remember you're human and some day we're going to face these same things," Kollar said. "You watch how some people die well and some people do not die well. You watch it and you know an end will come for everybody and it's something to think about and make peace with. Be mindful that you enjoy the present moment because that's really all we have. None of us were promised even an hour."

Family matters
VCU's palliative care patients are treated by a team of physicians, nurses, social workers, occupational and physical therapists, psychologists, chaplain, nutritionist and a bevy of volunteers who range in age from 14 to 65.

Suffolk resident Chris Gibbs visited Massey's palliative care unit on three occasions during the past year: twice for installation of an intrathecal pain pump and once for a procedure to help stabilize his spine. Now in hospice care, Gibbs suffers from lung cancer that spread to his spine and liver.

"Prior to my being diagnosed with cancer, I had no idea what a horrendous disease this is and the number of people who have contracted it," Gibbs said. "Nor did I understand the amount of pain it brings. I sat on my front porch with tears running down my face because the pain just would not go away."

Gibbs said the pain pump, which delivers medication directly to spinal receptors, has helped. Plus, he and his wife, Sarah, are continually impressed by the genuine concern the palliative care nurses and staff show for patients. Chris Gibbs said a Massey staff member offered to home-deliver his medication when he feared Gibbs had no other way to get it. The Gibbses live 75 miles away.

FROM LEFT TO RIGHT: Bart Bobb, RN; Whitney Main, RN; Dawn D. Quinn, RN; Deanna Bugge, RN; Joyce Robinson, LPN

"The care he's received has been excellent," Sarah Gibbs said. "They're very compassionate and they're there to help the patient and the family be as comfortable as possible." She said staff and volunteers even bake cookies and bring in other home-cooked food for patients and families.

At U.Va., palliative care services are part of the Family-centered Care Unit that includes geriatric patients. The idea behind family-centered care, Kollar explained, is to ensure the patient's support system – whether family, friends or neighbors – is intimately involved in patient care.

Coyne also said the VCU palliative care team wants patients' families to be knowledgeable and involved. "We do a lot of family meetings and a lot of education," Coyne said. "We want to make sure that when patients are making decisions, that families are helping and that they know the risks of procedures such as using a feeding tube."

Kollar said working with families can also shed insight into human behavior under stress. "You're dealing with all these parts of humanity and it's not always pretty," she said. "In a situation where you feel out of control – such as with a terminal diagnosis – everyone starts acting in different ways because they're suffering internally, and not all suffering comes out as tears or sadness."

But regardless of the challenges and stress, Kollar and Coyne thoroughly enjoy working in palliative care. "I think it's a very rewarding career, and need is only going to grow," Coyne said. "It lets you use all of your nursing intuition skills like no other place."