University Times

Can we control how well we live with a life-threatening illness and how well we die?

Pitt researchers at the forefront of a relatively new discipline of medicine, palliative care, believe we can live fuller lives during our final years and months.

Palliative care focuses both on those at the end of their lives and those with chronic degenerative diseases with a high probability of death, such as some forms of cancer and severe heart disease.

Palliative care researchers with specialties ranging from medicine to psychology to music therapy are studying not just the physical problems of life-threatening illness, but how to achieve the best quality of life while ill.

The goals of palliative care sound good enough. But they’re elusive. According to a Gallup Poll, while 80-90 percent of the American public prefers to die at home, the vast majority die in institutions.

“The idea that people want to die at home is usually qualified with they will die at home if it’s not an overwhelming factor for their families,” said David Barnard, director of Pitt’s Institute to Enhance Palliative Care. Barnard also is a professor of medicine and director of palliative care education at Pitt’s Center for Bioethics and Health Law.

Other reasons for not finishing out one’s last days at home are: lack of planning (one can’t always count on planning the course of an illness), expressing one’s wishes to stay at home and the uncertainty of one’s condition after a medical intervention, Barnard added.

More people are thinking and talking about these issues, especially given the uproar over the Terri Schiavo case. Schiavo died two weeks ago when she was taken off a feeding tube after lingering in a vegetative state for 15 years.

While we hear about advances in pain medications, it’s the total quality of life — the personal, emotional and health delivery systems — that Pitt researchers are exploring. And they are searching for answers that will impact a large segment of our population: the baby boomers. According to the Census Bureau, over 77 million people born from 1946 to 1964, are fast approaching retirement age and eventually will begin experiencing significant health problems.

One of the goals of palliative care practitioners is to learn how to help people with life-threatening illness maneuver through the logistics of home health care.

It’s not easy.

It’s one thing to request pain medication while in a hospital. It’s quite another situation when, say, your husband or mother with lung cancer needs morphine and you live in a rural area where the drugstore is 20 miles away. Other practical dilemmas for people living at home with a life-threatening illness or their caregivers include:

• You want to take a vacation. How do you manage your illness and medications on the road?

• You’re in a great deal of pain. How can you treat the pain and still remain lucid for a visit with friends?

• There are young children in your family. What do you tell them about your illness? And how do you tell it?

• Someone sick spikes a fever at 2 a.m. What does the caregiver do? Take the person to the emergency room or try to knock down the fever at home?

• A caregiver hasn’t been out of the house much for several weeks. How can that person get a break if other family members are at work?

These are the kinds of questions driving a different approach to chronic degenerative diseases and end-of-life care at Pitt’s Institute to Enhance Palliative Care, established in 2003.

“Medicine has gotten better and people are much more likely to live with a chronic health condition,” said Robert Arnold, a co-director of the institute, who holds the Leo H. Criep Chair in Patient Care and is professor of medicine and chief of the section of palliative care and medical ethics in the School of Medicine. He also is director of Pitt’s Institute for Doctor-Patient Communication.

Since the leading causes of death in America are long-term degenerative illnesses such as heart and vascular disease, cancer, and respiratory and chronic lung diseases, many people have years left to live after their diagnoses. Treatment of a life-threatening health problem is just the beginning of what a patient needs, given the length of many illnesses.

“Your doctor focuses on the illness itself and how to either cure it or make it better. But often the illness causes its own pain and suffering problems in your life. It affects your family,” explained Arnold.

“Palliative care tries to teach doctors and nurses to deal with the burden of the illness.”

If the idea of palliative care sounds simple, it’s not.

“We know that when people have serious illnesses, they are more likely to get depressed,” said Arnold. Depression weighs down the quality of life, preventing people from enjoying what they want to do.

“So, regardless of what’s being done with treating the primary illness, we need to worry about the psychological burdens and it’s not just depression,” he explained. “It’s the worries about what is going to happen. ‘What happens if the illness gets worse? Who is going to take care of my family? What’s going to happen with the money?’ Palliative care should help people cope with those issues,” he said.

For his research, Arnold focuses on communication issues in palliative care, how to better teach doctors to talk to patients and their families, something he says is the starting point for comprehensive care.

Say a doctor is treating a patient with a chronic heart problem. “A patient might say, ‘I’m really scared about what’s going to happen in the future.’ A normal response is to try to reassure the patient: ‘Don’t worry, it will be okay.’ Or the other approach is to move on and say, ‘Yeah, how’s your shortness of breath?’” A better response, Arnold said, would be for the physician to say, “Tell me what you’re concerned about.” Then, for example, the doctor could direct that person to psychological counseling.

But there are limitations to how much time a doctor can spend talking to a patient. There’s an economic disincentive for physicians to spend 30 minutes or more just talking with patients, according to Barnard. Insurance pays doctors and nurse practitioners based on the procedures they perform during a visit, he said. Simply talking to a patient is much less lucrative than performing a procedure.

“We don’t yet have a really good system in place where physicians and other providers are reimbursed for the time element that is so essential for palliative care,” Barnard said. That’s why Barnard, Arnold and other health professionals concerned about the legal and heath insurance issues associated with end-of-life care are working with local and state task forces to find solutions.

For example, effective palliative care might demand some form of medical coverage or a volunteer system for companionship at home for people with life-threatening illnesses. “What people need more than nurses are companions and aides — things not covered by Medicare,” said Elizabeth Chaitin, a co-director at Pitt’s palliative care institute and director of medical ethics and palliative care at UPMC Shadyside. Currently there are volunteers in hospice programs to help caregivers in a variety of ways, but as the needs expand in the future, it’s uncertain whether there will be a sufficient number of volunteers.

Figuring out how to tackle problems from the users’ end as they work their way through the health care system is what makes Pitt’s Institute to Enhance Palliative Care unique nationally, according to Barnard. The institute is a joint venture of Pitt’s Schools of the Health Sciences and Family Hospice, a non-profit hospice facility serving 11 counties in Pennsylvania and two in Ohio. Hospice programs provide support such as nursing and counselors for the terminally ill at the end of their lives, most often in a home setting.

“This is a very large operation that cares for a couple hundred of people on any given day,” according to Barnard. Affiliation with Family Hospice provides researchers opportunities to identify and study issues of concern to people who are dealing with illness, disability and death in their homes.

“It’s one thing to do basic biologic research on treatment for nausea or pain in carefully controlled experiments in the laboratory. It’s another thing entirely to know how those issues of nausea or pain or any other problem are actually dealt with in people’s homes,” Barnard explained.

How palliative care is dealt with emotionally in the home is another area researchers need to study. In a recent public information session at a retirement home outside of Pittsburgh, a woman said she was having problems discussing her husband’s illness with him. “The husband didn’t want to talk about his feelings. He didn’t want to make plans,” Barnard said of the woman’s situation.

“We here at the University say, ‘Everybody should be talking about their feelings and saying good-bye and achieving closure.’ Well, we’re learning by interacting with the people in the community just through this course – let alone actually doing research — that it ain’t so easy sometimes.”

Barnard said the future for helping to bring palliative care into people’s lives is to know more about who they are and where they live.

“We’re pointy-headed intellectuals to some extent here at the University and we need to ‘get out’ more, as they say. We have to find out the language people use and what their impressions and assumptions are of the services we can offer.”

Answers are found in the community: Barnard cites a study published in The New England Journal of Medicine that discovered many pharmacies in inner city communities don’t stock morphine. “The pharmacies are worried about theft and other problems and so, some of those findings point to an under treatment of pain, in say, African-American populations. That’s just one example of the difference between what we in the university hospital setting might define as the state of the art for caring for patients and the realities that families encounter in their communities.”

Different ethnic, racial and cultural communities have varying thoughts about end of life care. Depending on one’s values, religion and upbringing, there are different answers to questions concerning, for example, how much intensive care one accepts in the hospital, how open one should be with relatives and who should retain the authority to make decisions in the family. “There are a lot of cultural issues that we need more information about,” Barnard said. To that end, the institute is working with the Center for Minority Health Care at Pitt to develop some educational programs and research projects in minority communities in Pittsburgh so “we don’t adopt the one-size-fits-all assumption of who needs and who wants what.”

Sophistication in education about palliative care is another issue where the community holds the answer, according to Barnard. “People may not have a computer in their home, they may not be used to going to the library to look up information. We need to know how people learn about their options.”

Being enlightened about a life-threatening illness, living with it and talking about it will be more accepted in the future, in part, because, the topic is on the minds of most people these days, according to Barnard. But he cautioned that American society has a long way to go: “We’ve become accustomed in this country to having a lot of control over our health and destiny, and death, by definition, is not under control. We’re spooked. And no matter how carefully we lay our plans and how many good services we have to draw upon, death throws curve balls at us all the time. And I think we have to be somewhat humble, even as we are forward looking.”

Dealing with the end of life most always will be challenging, disruptive and emotionally painful, but Barnard thinks some comforts can be provided. “We certainly can look forward to marvelous advances in pain management in a physical sense. But eliminating the pain of loss, of broken dreams, of the disappointments of hope, should not be our aim. My definition of success is making sure that no one has to experience those things alone.”

—Mary Ann Thomas