A small 2-inch sticker on Nadereh Nasseri's computer tells the story of her life's work. It's the word "pain" surrounded by a red circle with a slash through it.
Nasseri, patient care coordinator for Hospice Care in Douglas County, is all about relieving the pain of death, both for those who are dying and their families.
To provide that relief she battles a society that has become more and more detached and more and more fearful of the end of life.
"Years and years ago our grandparents often died in front of us," Nasseri said. "They died in our homes, in the center room surrounded by family. The cemeteries used to be in town where we saw them every day. So many of us used to be farmers, and we saw the death of animals and we saw the natural cycle at work on a daily basis. But now we're detached from death."
Now news of a death is much more likely to come via a phone call from a nursing home, rather than through a goodbye in your living room. And Nasseri said that fact doesn't make it easier for anyone involved.
"There are so many times today that we keep death at bay at all costs, and therefore sometimes grief and loss slaps us in the face and devastates us because we have not been around it."
In its most basic form, palliative and hospice care are about easing the pain of that inevitable slap.
Relieving the pain
Palliative care describes health care that tries to relieve pain and suffering for patients with life-threatening illnesses while giving them and their loved ones information and support. Palliative care and hospice care can take many forms, but providers in Lawrence say the underlying principle is the same.
"When we talk about palliative care, we're really talking about getting out of the mode of trying to cure the patient and instead getting into the mode of trying to comfort the patient," said Teresa Sikes, the director of Lawrence Memorial Hospital's skilled-rehab nursing unit.
Health care workers move into that mode after a physician has determined that treatment to extend the life of a terminally-ill patient is no longer effective or feasible.
"Basically anyone is eligible to become a client of our hospice, if they have been given a diagnosis of months instead of years to live," Nasseri said.
According to government statistics, most of the 2.5 million people who die annually in the United States have incurable diseases, such as cancer, AIDS or diseases of the heart, lungs, liver, kidneys or nervous system. Most deaths follow long illnesses, extending over weeks, months or years, leaving a lot of time for pain, emotional upheaval, isolation and spiritual distress that rob any joy from the last days.
It's a situation the health-care system is just beginning to recognize. Although palliative care is well-established in many other countries, most of the American public and many professionals still know little about it. As a result, few patients are requesting it and most institutions are not equipped to provide it.
Good palliative care not only relieves pain and other symptoms and offers practical assistance for patients and caregivers at home, it also encourages discussion about values and decisions in planning for medical care, and respects these decisions after they are made.
And, at the end of life, it offers opportunities for closure even growth and helps the bereaved deal with loss.
Easing the way
Hospice Care in Douglas County has about 12 patients a day it cares for through a full-time staff of nine and about 60 volunteers. Nasseri says that her staff treats every patient differently but typically provides services ranging from medication to massage to counseling.
"We start by finding out what quality of life means to them," Nasseri said. "We then enhance what they define to be important.
"Some people say, 'My quality of life would improve if you could get my pain under control.' Some say, 'It would help if you could help my family understand my illness and my death.' We do all those types of things."
Unlike Nasseri's group, which must provide all its care in the patient's home, LMH can provide more advanced medical treatment, such as performing surgery and other procedures to relieve pain. But Sikes says hospital staff also provide many types of services that aren't technically medical at all.
"We do a lot of listening," Sikes said. "We may talk with them about whether there are any family conflicts we can help them get resolved, whether they have said everything they need to say to each other. Have they encouraged reminiscence?"
Ultimately, Nasseri said, everyone eventually wants to talk about how they are dealing with their death.
"My experience is that every individual at some level has needed to make sense out of their life and their death," Nasseri said. "One person told me she dealt with death like she dealt with paying the monthly bills. It was something that had to be done.
"But I had another person who was angry to the very end about how unfair it was that she was dying so young. We try to help them by talking about the idea of death being part of a larger natural process. But we never try to push our personal beliefs onto someone. What is really important is what the patients think about what happens after death."
A pioneer's path?
Nasseri says she and other hospice workers across the country could use more help in caring for the dying and their families.
"Our health-care institutions are not well-equipped to deal with the needs of people who are dying," Nasseri said. "Adequate in-patient hospice care is a need that is lacking across the country, but I think Lawrence has an opportunity to be and should be a pioneer in providing in-patient hospice care."
Sikes hasn't necessarily set out to be a pioneer, but after coming back from a medical ethics conference last fall, she has created a committee at the hospital to look at how to better provide end-of-life care throughout LMH.
The committee is now meeting once a month and includes members from a wide range of hospital departments, such as doctors, nurses, chaplains, community members and Nasseri. Sikes said that the group's goal isn't to create a new wing or unit of the hospital that focuses only on providing hospice care, but rather insure that every unit of the hospital is trained and equipped to deal with the needs of the dying.
That means that hospital staff members themselves are going to have to think about how they treat the dying because, Sikes said, it can be difficult for health-care professionals to shift from that curative mode to a palliative mode.
"The doctors are trained to cure, but some physicians have an easier time with making that shift than others," Sikes said.
Studies have shown that most doctors have difficulty with this communication. A training program in palliative care, Education of Physicians in End of Life Care, developed by the American Medical Assn. spends as much time teaching communication skills as symptom control. A similar training program for nurses is now being developed.
The medical profession is slowly getting on board in other ways. The American Board of Hospice and Palliative Medicine was established more than six years ago to set standards for specialist physician training and certification. To be certified, a doctor must have broad experience in caring for dying patients and pass a test that evaluates knowledge of symptom control, communication and ethics. More than 800 doctors are now certified.
Soon, experts say, this medical discipline will have standing like any other specialty, a situation that now exists in the United Kingdom, Australia and several other countries.
Thinking of the family, too
In addition to adopting a palliative care mode, Lawrence Memorial Hospital also wants to offer bereavement care to help family members cope with a loved one's death.
"We certainly do some of that now, but its not always on a formal basis," Sikes said. "For example, we have a man who comes up on a regular basis and donates magazines to our waiting room because I think it helps him to just talk to the people who cared for his wife in her final days."
Nasseri said that she does hope that the hospital and the community in general will do more to provide support for family members and other caregivers because the job can be so physically, emotionally and spiritually tiring.
And she also hopes that through these new efforts the community will get a greater understanding of what it means to enter hospice care or to place a loved one in the program.
"Most people say I don't want to go into a hospice program because I don't want to take away the hope," Nasseri said. "Well, hope is a powerful energy source, and we all need it everyday.
"But we try to make people understand that our philosophy is not to take away hope. We always hope for a cure. We always hope for comfort. And certainly, we always hope for meaning."
Next Sunday: Advance directives and making decisions about future care.