by Mark Woodland

We spend our lives making plans—school plans, career plans, wedding plans, birth plans, travel plans, vacation plans, holiday plans. We plan what to wear, what to eat, what to say. We plan our day, plan our lives, plan our future.

How surprising, then, that few of us ever plan our dying.

Even talking about dying, let alone planning for it, can be problematic. Some people avoid the topic out of fear. Some are constrained by cultural mores or religious beliefs or personal attitudes. Some just put it off until “later.”

But a group of University practitioners and professors is trying to change all that. Their interest in end-of-life issues ranges from the philosophic to the pragmatic, and the result of their inquiries is a growing dialogue about how we approach and experience the final stages of life. Together with dozens of health-care organizations throughout Utah, they received a three-year grant from the Robert Wood Johnson Foundation, the nation’s largest philanthropy devoted to improving the health and health care of all Americans. The grant was awarded to “The Partnership to Improve End of Life Care in Utah,” a collaboration that includes a half-dozen University of Utah colleges and more than 90 other groups and organizations from throughout the state (www.carefordying.org).

The partnership’s goal is to serve as an educational resource for the general public, policy makers, and professionals who are directly or peripherally involved in end-of-life care. The partnership’s director is Jay Jacobson, professor of internal medicine and chief of the medical school’s Division of Medical Ethics.

“We’re starting to pay more attention to death in the United States,” says Jacobson. “We’re beginning to accept that death is not a medical failure but rather the natural end result of life.” For Jacobson, the ethical challenges associated with end-of-life care have multiple causes with similar results.

On the one hand, an aging population is beginning to confront its own mortality. At the same time, that age group is often caring for elderly parents who are in the end stages of life. The result is an entire generation whose agenda includes issues associated with dying. They’re demanding choices in the how, why, and where of death, and lobbying for the ability to die well.

On the other hand, reductions in the Federal budget are forcing some health-care providers to reduce options and consider issues of allocation. That perspective often runs counter to patient demands for medical choices. At the same time, lawmakers are struggling with legal issues that address how patients are treated, how care is administered, and even how death is defined.

“This confluence of causes creates ethical issues that change almost daily,” Jacobson asserts. “The Partnership to Improve End of Life Care in Utah provides a way for us to explore those issues from a variety of perspectives.” Jacobson’s involvement in medical ethics spans more than two decades. In that time, the nation has moved from the Quinlan case to Oregon’s Measure 16. In 1976 the parents of Karen Ann Quinlan petitioned the courts for the right to remove their comatose daughter from a ventilator and other measures of life-extending care. The case generated national debate about patient rights and ultimately served as the genesis for such legal structures as living wills and advance directives (documents that help specify the quantity and intensity of care to be given in certain medical situations). Just two decades later, in 1997, Oregon’s Measure 16 became law after winning acceptance at the polls; the measure spells out legal safeguards for the practice of physician assistance in dying.

Locally, Jacobson believes the formation of the Division of Medical Ethics in 1989 helped to rystallize attention on end-of-life care in Utah (www.med.utah.edu/ethics). “Now we enjoy a relatively sophisticated climate,” he says. “We’ve been able to generate interest and attention across a variety of disciplines, including government, medicine, and academia.”

Among those contributing to the discussion are a significant number of University academicians, including Margaret Battin, professor of philosophy; Susan Beck PhD’88, professor of nursing; Dale Lund BS’73 MS’76 PhD’79, professor of nursing; Sharon Weinstein, director of pain medicine and palliative care at the Huntsman Cancer Institute; and many others. Their interest is generating a growing body of articles, books, speeches, and curricula on end-of-life issues. Illustrative of that involvement are professors Leslie Francis JD’81, Arthur Lipman, and Beth Cole.

Leslie Francis is a professor of law, professor of philosophy, and an adjunct professor of medicine. She finds end-of-life issues to be the common juncture among these diverse disciplines and has been exploring the topic for more than a decade.

“This is an area where the interaction between law and social-moral views becomes particularly interesting,” Francis says. “The law provides methods for people to plan the process of dying, but those plans are often bound by limiting cir-cumstances. And many people don’t take advantage of the steps that are available.”

Even then, Francis says, the process of implementing those wishes can be problematic. “Since most living wills only come into play when a patient is terminally ill or in a persistent coma, physicians and family members may have to extrapolate decision-making to other circumstances. They may not know what the patient would have wanted, and they may be reluctant to act as a result,” she says. Francis suggests special powers of attorney for health care can help to clarify who has decision-making authority to speak for a patient who cannot speak for him or herself.

“People are very often caught unaware,” Francis says of the situations that may precipitate end-of-life care. “They don’t think through what they’ll need to do when that process occurs. End-of-life issues can be overwhelming, both emotionally and economically.”

To lessen that strain, Francis encourages people to talk more openly about the level and intensity of care they expect in various end-of-life scenarios. For example, patients who are judged incompetent or who suffer from various forms of dementia may be unable to exercise expectations expressed in living wills because they are not judged terminally ill or in a persistent coma. Even so, the measures taken to sustain life may be far outside the parameters of care the patient desires. In such cases family members may be forced to make decisions without a sure knowledge that the choice they’re making mirrors the choice the patient would make.

Francis also encourages conversations with several family members so the burden of decision-making doesn’t fall on one individual’s shoulders. Additional conversations should take place with personal physicians, spiritual leaders, and close friends.

“Talk with the attending physician if you’re in the hospital,” Francis says, “and make sure your medical chart includes a copy of any advance directive you’ve signed.”

Arthur Lipman, professor of pharmacy practice, was a faculty member of the Yale Medical School in 1970 when he was invited to participate in a study that explored end-of-life care. The study not only affected the direction of his academic life but the provision of health care in America as well.

“The study led to research that helped establish the first hospice program in the U.S.,” Lipman explains. Hospice is a program of care that seeks to provide palliative medical care to patients who have been given a potentially life-ending diagnosis such as cancer, kidney or liver disease, dementia, HIV/AIDS, or congestive heart failure. Today, more than 3,000 programs are in existence, including over a dozen in Utah.

“Palliative care differs from curative care in its approach,” Lipman says, “but the two approaches can and should work hand-in-hand.”

With traditional curative care, the goal is to cure the patient of the illness. It takes an analytical and rationalistic approach that is based on diagnosis and aimed at the disease process. Palliative care, on the other hand, accepts that at some point in every person’s life a cure is simply not possible. It seeks to control or manage symptoms (e.g., nausea, pain, fatigue, discomfort) that often accompany the process of dying, and aims to comfort and support the patient.

“Palliative care is not about giving up or quitting,” Lipman says. “It is by definition an interdisciplinary field, so the expectation is that curative care will be provided at the same time as palliative care.”

In order to receive hospice care as a Medicare benefit, Lipman explains, there must be recognition by the patient, family, and physician that the patient has six months or less to live, and the physician must sign a declaration to that effect. “When that statutory requirement was put into effect in the early ’80s, most of the diagnoses were for cancer,” he says. “But now, 50 percent of diagnoses are for chronic lung, heart, and kidney diseases, or dementia, multiple sclerosis, and chronic neurological diseases, and it can be more difficult to prognosticate life expectancy for those conditions.” Complicating that prognostication is resistance, both on the part of some physicians who feel they are losing patients, and on the part of families who feel that requesting hospice care is an admission that a family member will die soon.

But early intervention is crucial, according to Lipman. “At the time of a diagnosis that carries the possibility of ending life in a year or less, it’s critical that a family establish a relationship with a hospice provider. It is a Medicare benefit, so it’s paid for, and a patient can be enrolled up to six months before the probable end of life,” he explains. “It’s so important not to wait until the patient is in pain or in social or psychological distress. It becomes harder to establish a relationship then, and it becomes more expensive because the care is more labor-intensive. We’ve seen cases in which a hospice worker gets called in by a family and, upon arrival, finds the patient dead or drawing the last breaths. The family has a much more difficult bereavement process then. If it happens sooner, there can be a process called ‘anticipatory bereavement,’ where a family can begin a grieving process in a psychologically healthy way.”

Coursework in palliative care is already required in the U’s pharmacy curricula, and the College of Nursing is set to introduce the End of Life Nursing Education Consortium (ELNEC) curricula into its baccalaureate program. Developed by the American Association of Clinical Nurses and the City of Hope National Medical Center, a National Cancer Institute-designated comprehensive cancer center, the course of study helps teach nurses how to talk about the process of death and confront specific end-of-life issues.

“There is nothing more intimate than dying,” Lipman concludes. “We hope to help society recognize that death is as natural as birth.”

Beth Cole, professor in the College of Nursing, agrees. “Death is not an abnormal phenomenon, nor a failure,” she insists. “We need to think about giving people the most dignified, respectful, gentle death possible.” That includes thinking about everything from the quality of assisted living/nursing homes to the decisions adult children are being required to make about the amount of care given to a terminally ill parent.

One U alumnus, for example, had to decide whether parenteral (I.V.) nutrition should be continued for his father, who was in the terminal stages of cancer. The man’s choice was made more difficult because father and son had never discussed end-of-life care and no advance directive existed. Within hours of requesting the liquid nutrition be removed, the father died. “It’s been five years since then,” the man explains, “but I still wonder if I did the right thing.”

Decisions about I.V. and ventilator use, in particular, can be very difficult, Cole notes, as can decisions about specific treatment options. “What if someone has had Alzheimer’s for 15 years and then gets pneumonia? Do you treat that person with antibiotics? Or do you let the sickness take its course?” she asks. Decisions that families must make about loved ones are fraught with ethical implications. “Where is that fine line between quality care and futile care?” she muses. “Yes, we have the ability now to extend life, but the question then becomes: ‘What kind of life?’ Are we extending life? Or merely extending suffering?”

Like Francis and Lipman, Cole suggests that families talk through such scenarios. “The decisions that families must make early in the disease process are different than those made at the end, and feelings can change as a disease progresses,” she points out. “It’s helpful to get to know your health-care providers so they understand the history and wishes of the patient. And it’s important to have a physician who will do what you want, not what she or he wants.

“At the end of life, the patient may be treated by lots of different specialists—urologists, pulmonologists, oncologists—and it’s hard to get consensus,” she points out. “The family should
call a meeting and have a plan that everyone can agree to.”

As director of “Caring Connections: A Hope and Comfort in Grief Program” (www.nurs.utah.edu/caringconnections), Cole is intimately familiar with suffering. She works with friends and family grieving the death of a loved one. “We try to help normalize the grieving experience,” Cole explains. “Sometimes people feel like they’re going crazy. They’re not
sure they can make it to the other side of this incredibly painful experience.”

The Caring Connections program provides a safe and supportive place for people to talk, either one-on-one with a licensed professional or in a group setting. The bereavement support groups are tailored toward a specific kind of grief (e.g., the death of a loved one due to a chronic or acute illness, as well as death by suicide or homicide) and include separate groups for children and adolescents. As Cole points out, for most survivors loneliness is the most difficult thing to get past. “Knowledge and understanding help,” Cole says, “but an empty house is an empty house.”

Talking to others who are grieving can normalize those feelings. “We’re here to help people talk,” Cole says. “Talking is often very curative, and once people are allowed to talk about their grief, they begin to heal.”

—Mark Woodland is a writer in University Marketing and Communications.