Patients and Care
Easing symptoms and soothing spirits are all in a day's work for nurse Kay Beard.
With a swift stride and a sunny smile, Kay Beard shows no qualms about the tasks awaiting her today. Before her shift ends, she'll talk to a family about their loved one's living will, assist in removing a patient from life support, and explain to a man exactly what his wife's DNR order means. She'll also comfort the dying, ease pain, and lift spirits.
Beard is the only palliative care nurse at Baptist Memorial Hospital-Memphis, one of five in the 15-hospital Baptist Memorial Health Care system and among only nine such nurses located at other area hospitals. Palliative care is a structured plan that aims to prevent and relieve suffering, help patients and families with decision making, and improve their quality of life.
"It evolved from hospice," explains Beard. "[Caregivers] discovered that cancer patients who were sent home without more chemo or radiation were having good end-of-life experiences and good symptom management, which is a big aspect of palliative care. Those staying in the hospital, however, weren't enjoying the same results. That's because doctors and nurses all go to school to make people better, to heal them. The reality of death and dying conflicts with what we're taught. That's why palliative care nurses are so important in hospitals."
Though similar to hospice, palliative care differs in at least two ways. Patients in hospice are facing their last six months of life. Those in palliative care are "more upstream," as Beard describes it. "They have a life-limiting illness that's not likely to improve, but their life span is indefinite." Also, those in palliative care may want to continue curative treatments for their conditions. "We don't say, 'You have to choose one or the other,'" explains Beard. "We can work along with the physicians as they treat the person, but our main goal is symptom management."
A native of Atlanta, the 43-year-old Beard followed other career paths before embracing her chosen field. After high school she joined the Air Force and was an air traffic controller stationed in the Philippines. Back in the states, she earned a degree in speech communications at Texas A&M, then moved to Albuquerque, where she was an allied-health recruiter and later pursued a bachelor's degree in nursing from the University of New Mexico with a goal of becoming a midwife.
When a colleague suggested critical care and intensive care nursing as "the best way to learn to think on your feet," Beard took that advice. She spent three years in ICU, an area she loved because of the bond she felt with patients and their loved ones. "As time went by," she recalls, "I noticed I was getting a lot of the dying patients. Finally one day I asked why." Her fellow nurses told her, "Because you're very good with the families."
Acknowledging that gift and putting aside her goals to become a midwife, she started looking into palliative care. While finishing a self-study and passing a certification exam, she accepted a palliative care nurse position at BMH-DeSoto in 2005. She has been palliative care coordinator at BMH-Memphis since 2006.
Though raising a 9-year-old daughter, working toward her master's in education at the University of Memphis with plans to teach student nurses, speaking to groups about palliative care, and occasionally working in a golf game or a few days of travel, Beard tries to make herself available to patients and families when they need her. "Sometimes evenings or Saturdays are the only time families can meet with me," she explains, "so I try to accommodate their schedule."
Beard works with Dr. Kelley Myers, a family practice physician who is also board-certified in palliative medicine. Depending on their schedules, the physician and nurse may make rounds together or, more often, divide up the list of patients needing their special attention. These are located throughout each unit of the hospital, including ICU, restorative care, skilled nursing, all medical and surgical floors, and the women's facility.
"Pain, breathlessness, anxiety, and depression are the main symptoms we treat," says Beard. The most common diseases that cause pain are cancer, especially the aggressive types, including gastric, pancreatic, and liver cancer. Other culprits that can cause not only pain but breathlessness are COPD (chronic obstructive pulmonary disease) and heart failure. "If the heart pump begins to fail," explains Beard, "fluid backs up and that can be terrifying to people. So anxiety and depression can be huge for these patients, especially if they're newly diagnosed."
During an initial consultation, Beard will thoroughly read the patient's charts and doctors' notes to assess the severity of the illness and how well the patient can function. He may be ambulatory and able to feed and dress himself, or he may be on a ventilator and unable to move.
Beard also determines what kind of pain the person is suffering. "There are two types," she explains. "One is nociceptic, which is acute, sharp, tissue-oriented pain. The other type is neuropathic and more involved with nerve endings and usually some tingling. Opioids will help the acute pain but they won't touch neuropathic pain. So we sit down and assess just what they have and how to help them."
If the patient is competent to make decisions, Beard asks if he has a living will. If he's not competent, she talks with family members. "The earlier we're involved with a patient who has a life-limiting condition, the more we're able to prepare their families," she explains. "We can talk to them about advanced-care planning and help them determine who they want to appoint as a health-care power of attorney to make decisions."
Beard emphasizes to families how a living will can make their lives easier. "Say a mother is sick with cancer and she has a living will. That document relieves her children of the responsibility of making decisions about her care," says Beard. "That can be such a burden for children. I tell them their job is to honor her wishes and to make sure we fulfill what she wants."
In cases that are life-limiting but not yet terminal, honoring those wishes can be harder. Beard recalls a man who wasn't imminently dying but whose condition would only worsen. Though he had a living will, his wife and children had not turned it over to hospital administration "because they still had hope," she explains. "I just encouraged them to put their personal feelings aside and abide by their loved one's living will."
Helping patients and families navigate the health-care system is a big part of Beard's job. "Communication is so important," she says, "especially in a field that is so fragmented." She describes a hypothetical patient with Crohn's disease who is admitted to the hospital after suffering a mild stroke and heart attack. Three doctors would be involved — a cardiologist, a neurologist, and a gastroenterologist — and each one would report his findings to the patient. "My job would be to tie all that together and to explain how it all fits in the big scheme of things," says Beard. "I may tell the woman, 'The stroke is resolving and you'll go to rehab in a week. Your GI doctor has recommended something for your Crohn's disease. And your cardiologist wants to do a catheterization for your heart.' I would give the patient and the family specific questions to ask each physician, including a very important one: 'If this were your mother, what would you recommend doing?' I think it's a valid question."
Although palliative care is a level removed from hospice, Beard says most of her patients are now in symptom management only: "Most of them are at end-of-life but not yet in hospice care."
Collaborating with other caregivers, Beard tries to assess how much time the patient has left. "Based on my ICU experience, I'm pretty accurate, and I don't want them to have to move around unnecessarily." For instance, if she's been caring for a large, 98-year-old man, whose 94-year-old wife is frail and ill herself, "it's probably not a good idea for him to go home. If that's what they really want, I try to find out about social support, such as other family or church members, to assist with this gentleman's care," says Beard.
A person's status can change rapidly. "One day a patient will be sitting up and talking, the next day, he'll be dying. So we start right away preparing the family," says Beard. "The patient may qualify for our in-house hospice [depending on insurance and length of stay]. Or they may want home hospice care or a nursing home hospice. And if the patient has a "do not resuscitate" order, we tell people to put little signs on the phone: 'Do not call 911.'"
Beard encourages families to participate in comfort-giving, whether it's bathing the patients, clipping their nails, or giving them hand massages. "I carry lotion with me all the time," she says, "and it's a soothing way to help them both relax." She also assures families it's fine to bring in radios or CD players with headphones for a little "music therapy," as well as photos of people or pets. "We have a pet visitation policy," says Beard. "If patients and families are agreeable, the dogs or cats are allowed to get on the bed, and that can really lift a person's spirits."
During a patient's final weeks or days, "comfort feeding" can be a solace to patients and their loved ones. "People who are dying seem to enjoy the Italian ices, slushes, ice cream," says Beard. "These foods are cool and refreshing. And it's a relief to the families to see their loved ones eat something soothing."
In addition to easing — or "palliating" — physical pain and discomfort, Beard also delves into the emotional and spiritual realm. As a student of holistic nursing, she believes in treating the spirit as well as the body. And with a strong Christian faith, yet one who respects other beliefs, she listens to her patients' concerns, prays with them if they request it, and tries to guide them through fear, guilt, forgiveness, and all the unfinished business of life: "I'll tell them adamantly, 'This is the time to say things you want to say. To be honest. You won't have the chance again.'" She advises writing letters or recording messages to family members or friends. And she emphasizes to the patient, "Where you're going is awesome."
Harder for her than most are patients with no faith in a higher being or in the afterlife. "That's the biggest challenge I face," she acknowledges. "I just give those people physical comfort and beyond that, I honor their beliefs."
Denial of a terminal condition also poses challenges for Beard. "Some patients and families, many of them very religious, will want more and more treatment," she explains. "I'm a medical person and I know what's coming. Getting them to see that is so hard." Rather than pushing them to face facts, she affirms their faith in miracles and the power of prayer. "They continue treatment," she says, "and I provide comfort."
Patients often confide their fears to Beard. One woman was terrified of suffocating. "No matter what stage of the ventilator she was on, she couldn't breathe. She was having panic attacks," says Beard. "When I got there, she said, 'Please don't let them bury me in a box.' Even in her death she thought she'd feel the sensation of suffocation. I assured her that would not happen." Beard also looked at her meds. The woman was receiving the anti-anxiety medication Xanax through a feeding tube. Beard added some Ativan through an IV, which provided faster-acting relief between the Xanax doses to alleviate the patient's anxiety.
Of keen importance to Beard is what she calls "compassionate withdrawal" from a ventilator, or life support. She tells of a young woman with lupus, a wife and mother with two small children who was experiencing multiple organ failure and in considerable pain. "The family was so concerned that when we removed the ventilator, she'd struggle to breathe," says Beard. "So we gave her some medicine for anxiety and we put her on a morphine pump. We have learned that morphine in large doses knocks out the respiratory drive. But in small doses, it actually causes the vessels around the heart and lungs to enlarge and get more blood and oxygen to those organs. So that's how we helped that young woman. We relaxed her, allowed her to breathe better on her own, then we put the ventilator into a lower mode, before we removed it completely. She breathed on her own about an hour. She was awake and looking around. She had a peaceful passing, which was a relief to her family."
Beard also helps patients who aspirate — that is, take food into the lungs when breathing. "When we swallow and something goes down the wrong way, we automatically cough," she explains. "But patients who have had a stroke or other problems might not be able to do that." If caregivers determine that the patient is aspirating, then a feeding tube may be recommended. However, some people, through their living will, reject the use of a feeding tube, stating, "If my condition is terminal, you have permission to withhold artificial nutrition and IV hydration."
"Feeding tubes are not always recommended in all patients. They have risks and benefits and we try to help the family sort through these and weigh the difference," says Beard. "The problem is there's a moral conflict about starving people. So I explain that technology is great, but they have the right to say no. I empower them in that way. If the patient is not competent to decide, I will tell their family members, 'Think about what [your mother or father or husband or child] would want and what he or she would tell us if she could.' I have told my own family, 'If the time comes that I cannot eat, I do not want to be here.'"
On rare occasions, Beard will have a patient with pain so severe the typical drugs provide no relief. "The person may have bone cancer that's causing terrible suffering," she says. "Or maybe the cancer has metastasized to their brain, and they're talking in ways they don't normally talk and it's embarrassing to them for their family to see them that way. They'll beg me for something to help them and we try so hard to get that pain under control." With the patient and/or family's consent, the patient will then receive a medication that "provides a constant state of relaxation," says Beard. "We allow them to rest peacefully until the end of their lives, to essentially sleep their way out, to keep them comfortable so they're not aware of anxiety and pain."
With a job that can drain her spiritually and emotionally, Beard draws strength from her faith and from being able to help those who are afraid of leaving this life. She recalls a young mother, ravaged by HIV and terrified of dying, certain that she'd "go to hell" because of her lifestyle. "My job was to make sure she didn't worry about that," says Beard. "I am so certain of what comes next that I want to reassure my patients. That's a huge concern to me." The mother also dreaded having her small children see her in her last days. "But I convinced her that her children would be very sad if she passed and they couldn't be there with her," Beard continues. "So we got approval to let the children come to see her, to get in bed with her and love on her, and it was very emotional."
Beard has tended to patients of various ethnic groups and religious beliefs. Among them was an Asian man of the Buddhist faith who was very close to death. A monk held a ceremony over the patient "to determine if this was a good day for the man to die," says Beard. "When he determined it was not a 'good' time, the family asked us if there was anything we could do to keep him alive till the next day. That was about 7 p.m. We used a medication to support his blood pressure till after midnight. Not long after that, the gentleman passed."
Recalling that evening, Beard says, "From the nurses' station we could hear the family chanting; it was very moving."
Through her three-year career as a palliative care nurse, Beard has given solace to many patients and family members. Among them is Madge Deacon, whose 86-year-old mother spent 10 days in BMH-Memphis' hospice before dying at home last fall. She has only one regret: "I just wish I'd met Kay and started the whole [palliative/hospice care] process sooner."
Struck by polio in her youth, Deacon's mother had a severe limp and chronic pain in her right leg, along with advanced dementia. "But up until the last nine years of her life, she was one of the most active people on the planet," says Deacon, who was her mother's health-care power of attorney. On that last admission to the hospital, Deacon knew that visit would be different from all the others. She realized she and her mother needed palliative and hospice care.
"Kay would come to see my mother and we'd have long conversations," Deacon recalls. "It was almost as if she had a crystal ball, the way she could evaluate Mama's situation and sense that the process of dying had begun. When the doctor suggested a feeding tube [her mother was down to 87 pounds], Kay made clear to me what decisions were mine to make. She helped me understand that not eating could be the dying person's way of letting us know she was ready to go.
"She was particularly good at helping me deal with emotional and logical issues, keeping them in balance," continues Deacon. "In my mind, anything that would prolong Mama's already incredibly long, hard journey was not what either of us wanted. Kay gave me the stability to refuse the feeding tube on behalf of my mother. Having her as a resource made the last month easier than I would ever have imagined."
Deacon also asked Beard to speak with the daughter of her mother's 73-year-old housekeeper, whose diabetes was raging out of control. "[The housekeeper] was on dialysis and was not doing well at all," says Deacon. "Kay told the story of a friend who, at age 40, discovered how hard dialysis can be on the body. She said, 'Think how much harder it is for someone who is 73.'
"Kay handled it all with such kindness and simplicity," says Deacon. "She made everything easier, clearer, and above all, peaceful."
Nine years ago, when Beard first became a nurse, she wanted to usher babies into the world. She hoped to find a job in labor and delivery, but none came available.
Then she learned about palliative care and during her second week on the job, she discovered a book called Midwife for Souls: Spiritual Care for the Dying. After reading it, she believes she knows why the door to her first career choice remained closed: God was opening another one. "This was my calling," she says. "I'm a midwife, but in a different way. Instead of bringing people into the world, I'm easing them out."
In the process, she tries to soothe the grief of those left behind, and they may not always be in a hospital room. "I was in a furniture store the other night and a saleswoman introduced herself and she noticed I was wearing nursing scrubs," says Beard. "The next thing I knew we were having a deep conversation and she was crying because her mother was dying. It hap-pens all the time. I think it's a divine thing."
Deacon won't argue with that: "Kay has truly earned her wings. She makes the dying experience as comfortable and dignified as possible. She's an amazing lady."