FOND DU LAC — More than 200 people filled Marian College’s Stayer Center April 25 to hear Dr. David Weissman, director of the Medical College of Wisconsin’s Palliative Care Center, speak on “Death and Dying in America: Past, Present and Future.”

Audience members ranged in age from college students to retired professionals; 80 percent were female and included a local church’s Stephen Ministry, a funeral home director, pastors, hospice workers, and nursing home workers.

One participant had lost three siblings to suicide. “I’m looking for understanding,” she said.

Weissman, board certified in oncology, hospice and palliative (end-of-life) care, discussed the origins and progress of hospice and palliative care in America, the difference between the two, and the direction end-of-life care is taking.

Communicating with terminally ill

“One of the most profound aspects of dying,” said Weissman, “is the sense of isolation. Fundamentally, the construct of dying is about having no future.”

“We’re all thinking about what we’re going to do after I give this talk,” he said. “You’re thinking about what you’re going to do tomorrow, what you’re going to do next month, and what you’re going to do on your vacation. That’s your future. For the person who’s dying, the existential issue is the loss of future.”

That makes communication with the dying very awkward for many people. The million-dollar question, said Weissman is “What do you say to comfort the person who is dying? Is it I hope you get better soon, or I hope you die soon?”

Weissman acknowledged that knowing what to say is one of the most difficult aspects of providing care for the dying.

“Follow the patient’s lead. Give them the opportunity to lead the discussion,” he advised.

It is in being present to the dying, not the words the caregiver uses, which provides the most comfort to patients, he said.

Family, patient form unit

Hospice began in England in the 1960s-’70s, he said, in reaction to poor pain control, excessive medicalization of death and overuse of emerging technology. Hospice is not a place, said Weissman; it is a philosophy of care for dying patients and their families.

In the United States, hospice is most commonly a form of home-care, although patients may also reside in long-term care facilities, or, less commonly, a hospice residence.

Hospice care is generally funded through Medicare Hospice Benefit (MHB), said Weissman. A patient elects to “go on the MHB” and signs off Medicare Part A (hospital payment) for charges relating to their terminal illness. The hospice agency receives $126/day per patient (irrespective of costs) and agrees to provide skilled nursing visits as needed, a physician medical director, medications, home health aid, counseling, preparation for death including funeral planning, spiritual support, inpatient care for acute symptom management or impending death, and a bereavement program for families. The dying patient and family form the unit of care in hospice.

Besides Medicare, Medicaid and private insurance are alternate sources of funding for hospice, said Weissman.

Palliative care begins

The palliative care movement began in the 1980s-’90s for the same reasons hospice began, said Weissman. Hospice was great, he said, but it only reached a fraction of the patients due to lack of penetration into hospital culture and academic research, as well as the stigma that hospice care is a sign of “giving up” by the patient/family.

Additionally, he said, 75 percent of Americans do not die at home, making the home-care aspect of hospice somewhat irrelevant to how they die.

Combine this with the subtle anti-doctor and anti-technology emphasis of hospice, and you have two groups that do not readily intersect, said Weissman. Palliative care, on the other hand, attempts to address the same problems as hospice, but with a model that works from within the “system.”

A major impetus of palliative care, said Weissman, was the Physician-Assisted Suicide debate of the 1990s.

“One of the best things for the hospice and palliative care movements has been the assisted suicide discussions, because it got people to really look at the alternatives,” he said.

“Palliative care is the care of patients with advanced, progressive disease in whom cure is no longer possible,” explained Weissman. “The focus of care is the quality of life.”

Palliative care extends hospice’s philosophy earlier into the disease course, he said, and focuses on letting patients live the best lives they can in the time they have left.

Unlike some hospice agencies that may have admission criteria such as no artificial hydration or TPN (nutrition administered intravenously), there are no rules regarding the use of technology in palliative care, said Wiessman. It depends on the goal of the patient.

For example, said Weissman, a terminally ill person may want to live long enough to see his/her child graduate. That patient will be treated with antibiotics if he/she develops pneumonia; another patient who develops pneumonia may choose to forgo this treatment, and let the disease take its course.

“The last 10 years have seen a tremendous push in improving end of life care. There’s been a huge growth in heath professional training requirements and programs,” said Weismann. “Here’s a sad fact: it wasn’t until the year 2000 that the accrediting body for medical schools required doctors to learn something about the end of life.”

The future, according to Weissman, will see palliative care become a required aspect of all acute care hospitals, as well as a recognized medical and nursing specialty, bridging modern medicine and hospice ideals.

Thanathology program announced

During the lecture, a new program jointly created by Fond du Lac’s Marian College, Agnesian HealthCare and the St. Agnes Hospital Foundation was announced.

The Edwin S. Shneidman Program in Thanathology, designed to advance knowledge about the physical, spiritual, psychosocial, and ethical needs of individuals and families experiencing bereavement, will serve to illuminate the human experience of dying.

Shneidman, professor emeritus of thanathology in the UCLA School of Medicine, is a pioneer in the field of thanatology (the study of death, dying, grief and bereavement), and a nationally renowned expert in suicidology.

The thanathology program has: a certificate program for professionals who work with individuals and families confronting death and dying; community education events free of charge and open to the public; and a research collaborative seeking to discern gaps in end-of-life services in the greater Fond du Lac area.

“It (the Shneidman program) is truly an extraordinary event for the city of Fond du Lac and the state of Wisconsin,” said Weissman.

For more information on end of life issues, go to these resources on the Internet:

— End of Life/Palliative Education Resource Center.

— Medical College of Wisconsin Palliative Care Center.