Care beyond Cure

Dying naturally - palliative care can reduce the suffering

A special holistic program of services is helping dozens of patients in the Northwoods come to grips with a chronic or progressive disease or illness that like the sands of an hourglass, measures their days left on this earth in no uncertain terms.

The palliative care program (pronounced PAH-LEE-UH-TIVE) bridges the end of an individual's healthy life to the time he or she may enter hospice care or a nursing home. It seeks to prevent or relieve suffering and to support the best possible quality of life for patients and their families.

“We enter a patient's life when their disease is not going to improve,” said Lisa Becker, coordinator of the palliative care program at Eagle River Memorial Hospital, in Eagle River. The latter stages of one's life can be fraught by pain - physically, spiritually and emotionally - as the individual tries to cope with the inevitable.

“It's not about dying,” she added, “it's about living with a serious illness.”

Although palliative care bridges into hospice care, there are important differences, according to Colette Zunk, who coordinates the palliative care program at St. Mary's Hospital in Rhinelander and Sacred Heart Hospital in Tomahawk. Both Becker's and her programs fall under the umbrella of care provided by Ministry Health Care.

Hospice care is for those whose life expectancy is measured in months not years. No curative care is given for hospice patients, only treatments and medicines aimed at relieving symptoms and pain.

A person does not have to be dying, nor required to stop medical treatments, in order to receive palliative care. Those for which palliative care is appropriate have been diagnosed with diseases or illnesses that cannot be cured. But in some cases, such as multiple sclerosis, death could be years away.

For most other palliative care patients who may have congestive heart failure or inoperable lung cancer, the prospects for prolonged life does not extend beyond a few years and in many cases, far less.

In all cases, the two women say, their palliative programs offer a host of free services that attend to basic needs and wishes. Those faced with end of life typically have these major concerns:

“The ability for people to make their own health care decisions, straight forward medical information and pain management,” Becker said. Most want to continue with their normal activities, such as going to church, shopping, etc., for as long as possible.

“Our approach is to focus on the patients - what their wishes are,” said Zunk. “What do the patients want to accomplish before they get too sick.”

Tops among those wishes is ensuring that the surviving spouse and family members are provided for once the patient dies. She also finds that many people set a survival goal tied to an event: making it to Christmas, for instance, or seeing a child graduate from college. It's also time for closure: Righting wrongs, reuniting with estranged family members.

“There are so many (goals) … for every occasion,” Zunk said of the 10 years she's been involved in end of life care. She's also seen the spectrum of acceptance and resistance to the approach of death.

Some patients struggle against the inevitable up until the moment of death. Others, because of pain, loss of body functions and inability to do household chores, acknowledge life has run its full course and become full partners in the planning process.

The local programs use a team approach to address those concerns, including such matters as advance directives for life support decisions, living wills and power of attorney. Services are provided in an array of settings: in the home, nursing home, or hospital. The in-house palliative care team at St. Mary's includes a doctor, social worker, chaplain and a pharmacist. Each has specialized training in end of life care.

The pain of a chronic disease can often be overshadowed by the pain of being alone. In many instances the program coordinators and their many volunteers stand in place of children or siblings who are hundreds or thousands of miles away from the patient. Both women said oftentimes a patient is reluctant to let children know of their condition and visa versa.

Zunk currently has 20 patients that she sees in their homes. When the program first started she had 80 patients in the first eight weeks. She assists nursing homes with patients and works with staff to educate them on the palliative program.

Part of their job is to open the doors to communication between patient and family. It also extends to physicians, Zunk said. Physicians get very attached to their patients, many of whom they have seen for years or even decades.

&#8220Doctors are taught to cure,” Zunk said. &#8220As a society we see death as a failure. Ministers and spiritual leaders, however, don't see death as a failure.” Zunk and Becker say it's important that cultural and religious concerns of each patient be appropriately addressed.

Becker frets that her outreach education may be a double-edge sword in that it will generate even more requests for the program that has finite resources can handle. She has no other staff and relies on a coalition of volunteers to shore up the program, which is supported financially by grants from Ministry.

The Eagle River Area Palliative Care Coalition, comprised of community volunteers, meets the first Wednesday of each month at 1 p.m. in the hospital's Auxiliary Hall. A speaker talks about palliative care issues and community services. Meetings are open to the public.

The Eagle River hospital offers advance health are planning workshops the first and third Fridays of the month, at 10:30 a.m. in the hospital's video conference room. St. Mary's also have advance planning workshops, run by Sue Kirby, Community Link coordinator.

Information includes such topics as:

€ How your personal values and beliefs affect your health care choices,

€ Types of medical treatment you may face,

€ What makes a good health car agent, and,

€ Information on drafting important documents.

The nature of the business can be trying, Becker said.

&#8220Sometimes you suffer from compassion failure,” she said, but the results far overweigh those days.

&#8220I count my blessings,” she added. &#8220I really get a lot of wonderful feedback from patients and their families.” Many times it's from a daughter or son &#8220trying from long distance” to provide care for a frail elderly relative. She's been thanked numerous times for &#8220letting us know, and for helping us understand what we are gong to be facing.”

Zunk says she has the same sense of accomplishment. &#8220I get a lot more from patients than I give,” she said. Although the situations are sad, it's very satisfying to &#8220help people find peace.”