The patients that Evelyn Daws works with at the AIDS Services Foundation in Irvine are officially called clients. But as Daws shares stories about some of the people she's encountered during the past three years through her work as a medical case manager, it's clear that those she's talking about are--or were--friends.
"I get very emotionally involved with my clients because of the nature of what I do," says Daws, a registered nurse who lives in San Juan Capistrano. "In many ways, case management is life management. My job is to help clients identify their practical, medical, emotional, spiritual, legal and social needs, and then do whatever I can to make sure those needs are met."
For some clients, that may mean arranging help with cooking, cleaning and shopping so that the client's energy can be used more productively. For others, it may mean coordinating home health care nursing visits so that they can remain at home, helping them understand and better manage his or her symptoms and treatment options, or finding health benefits they might have otherwise overlooked.
Daws is one of hundreds of Orange County residents who work on the health care front lines with terminally ill patients, and her work exposes her to the harsh reality of pain, illness and loss. Her client list is ever-changing. Since joining ASF in 1989, she has lost 118 clients. She returned from vacation earlier this month to learn that seven more clients had died during her three weeks away.
"There are times when I feel like I can't do this anymore," Daws admits. "But whenever I feel that way, I realize it's a cue that I'm not paying enough attention to my own health and well-being. I'm here for the long haul, but to do that I first need to take care of myself."
Depending on their condition, Daws connects with each of her 56 clients either in person or by phone anywhere from several times a week to once every couple of months. For many clients, just knowing that Daws is a phone call away provides a valuable sense of security.
"When things are going really well I might only talk with her every six weeks or so, but I know that if a problem occurs and I need help, she'll be there for me," says Ron, 45, who's been an ASF client since October, 1987, when he was first hospitalized with pneumonia.
"I always look forward to having Evelyn drop by. She's got a bright personality, and we get along so well. Knowing that her emotional and practical support is there if I need it makes a real difference."
While Ron, who lives in Laguna Beach, doesn't socialize with Daws, he says he still considers her a good friend.
"She does things for me that my friends can't and vice versa," he explains. "Our relationship is much warmer and more personal than it needs to be, but I don't push it. I recognize that it's important for health care workers to keep some distance and objectivity with their patients."
Some patients, says registered nurse Jim Lacy, aren't nearly as understanding.
"Patients are people. Some are loving and gentle and appreciative, but others can drain you by being manipulative and demanding and angry and needy," says Lacy, director of specialty programs for Lifecare Solutions in Tustin.
Lacy, who spends much of his time training his company's nurses about HIV disease and AIDS, has personally provided intermittent in-home care to hundreds of patients during an eight-year period.
"You need to set clear boundaries and remember that you're there to assist the patient in maintaining his or her health," he says. "You have to suppress your desire to control, and you need to respect the patient's choices, even when you may not agree with them. You also need to maintain a sense of balance between caring for others and caring for yourself."
That, says registered nurse Harriett Dennison, is often easier said than done.
"Most relationships in life are give and take. But when you're caring for a patient you know is dying, you tend to give more and to not expect very much in return," says Dennison, who lives in Laguna Niguel."It's very easy for the relationship to become one-sided if you're not careful."
Dennison, a registered nurse since 1976, began doing home health care nursing 13 years ago. She says that no matter how conscious she is about setting limits and tending to her own physical and spiritual needs, there are times when the only way she can regain her sense of balance is to take some time away from caring for terminally ill patients.
"A little of you dies with every one of them," says Dennison, who has been at the bedside of nearly a dozen patients when they died. "You can't keep giving and giving without pulling back every now and then and taking time out to rejuvenate and recapture your energy. You have to make a conscious choice to take care of yourself. If you don't, you end up having nothing left to give."
Dennison says she's learned the hard way about setting limits.
"There have been times when I've taken on more and given more of myself than I should have," allows Dennison. "But that's how you learn. Sometimes it's really hard. When you're visiting a patient in their home three or four times a week, you really get to know them. I know I've really clicked with someone when I give them my home phone number and tell them they can call me any time. When that happens, I know I'm going all the way with them."
Dennison has taken a break from working with critically ill patients since January.
"The people whose homes I'm visiting now are all going to get better," she says. "They're patients who are on IV antibiotics for infections and things like that. I tell most of them that when they fully recover, I want them to take me dancing or out to lunch. Sometimes they do. But I'm at a point now where I'm almost ready again to work with someone whose future isn't as bright. I'll probably take on terminally ill patient before the holidays."
Angie Dickson, who specialized in oncology nursing and worked for years at a Marin County hospice before earning her Ph.D. in psychology in 1989, says close relationships between health care providers and patients are more likely to develop when care is being provided in the patient's home. "You're in their kingdom, a place where they feel most comfortable," said Dickson, who practices at College Hospital in Costa Mesa and volunteers as a bereavement and grief recovery group facilitator for groups such as ASF.
"In that setting, they're exposing their personal rather than public selves. The real person comes out, and the likelihood of the relationship becoming more intense and intimate is greater. Instead of talking about things like the weather, you often end up talking about life and death. They share their pain and anger and grief much more openly in the privacy of their homes. You also get to know patient's family or support system, and often get involved in supporting them to see it through to the end."
While such intense relationships are often draining, they can also provide care-givers with some priceless life lessons.
"I've learned a lot from people who knew they were going to die," says Jim Lacy. "Most of all, I've learned to live in the present. The patients who seem to do best are the ones who don't dwell on the past or worry about the far future. I've also learned not to get upset over little things that really don't matter. I used to get really bent out of shape, for example, if I got ink on my shirt. I've come to realize that in the grand scheme of life, ink on a shirt is no big deal."
Lacy says many nurses walk a tightrope between their personal and professional relationships with dying clients.
"It's a constant balancing act," he says. "Co-dependent personalities are naturally drawn to helping professions like nursing. That's not necessarily a bad thing as long as you can manage your temptation to rescue or control."
Evelyn Daws says health care workers have a moral and ethical responsibility to respect the patient's wishes, even when they may not agree.
"Our primary responsibility is to assist the patient in maintaining his or her health," Daws says. "It's not about doing what I think they should do, but what they choose for themselves. We all have our own agenda in this life. This is the client's journey, not mine. They have right to live out their life and have their death the way that's right for them. My desires for them, or my judgments, should never get in the way."
The other challenge, Lacy says, is managing the inevitable grief and loss when patients die.
"There's no way you can avoid feeling down and depressed when you lose a patient you've grown close to," says Lacy. "You're going to grieve. That's why a lot of nurses go to their patient's funerals or memorials. There was a time when attending funerals was against my rules. I told myself that I didn't need it, that it only made things hurt more. I later realized how healing that process can be."
Harriett Dennison says that while the realities of death sometimes wear her down, she believes some good news is on the horizon. She's convinced that an end is in sight for the AIDS epidemic, which has claimed the lives of more of her patients than she cares to count.
"I know there's a cure right around the corner," she says hopefully. "Somewhere, someone has the answer, though he or she might not even know it yet. One day soon, a cure is going to surface. Hope that the cure will come soon, I think, is what keeps a lot of patients--and a lot of us--going. You never know if tomorrow might be the day."