Respecting patient choices for end of life

February 5, 2012
| By Pete Daly |
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Some form of POLST-type documentation may become part of health care in Michigan; it’s the subject of a special committee formed in Grand Rapids, and Munson Healthcare in the Traverse City region is trying it in a pilot project.

POLST stands for physician orders for life-sustaining treatment, a very detailed, patient-directed document that would replace a simple “do not resuscitate” order.

According to Carolyn Flietstra, vice president of Home and Community Based Services at Holland Home in Grand Rapids, POLST is a trend to watch, as far as changes coming in health care.

Barry Cargill, executive director of the Michigan Home Healthcare Association, said MHHA supports POLST “as an alternative to the do-not-resuscitate order because it gives the patient much greater control over their end-of-life care.”

He added that a significant advantage of POLST “is that it follows the patient, whereas a do-not-resuscitate order will stay with the hospital or health care institution.”

Spectrum Health spokesman Bruce Rossman said it has a committee looking at it with the goal of implementing it system-wide, which he indicated could take place this year.

POLST began in Oregon in the early 1990s, according to a report from the AARP Public Policy Institute. By 2010, at least 12 states had adopted a POLST model, and there were proponents in most other states. In other states, it is known variously as POST (physician orders for scope of treatment), MOLST (medical orders for life-sustaining treatment), MOST (medical orders for scope of treatment), and COLST (clinician orders for life-sustaining treatment).

In 1991, leaders of the major health care organizations in La Crosse, Wis., collaborated on development of an improved model of end-of-life planning and decision making, which ultimately led to the creation of Respecting Choices, a not-for-profit 501(c)(3) corporation owned and operated by Gunderson Lutheran Medical Foundation Inc. in La Crosse.

The Respecting Choices organization says its program is “dramatically different from unproven advance directive programs available today.” It emphasizes the process of advance care planning and is a staged program, based on a person’s state of health, with an ongoing process of communication integrated into the routine patient care. Other programs “see advance care planning as a one-time event, a one-size-fits-all approach,” according to Respecting Choices.

After the first two years of full implementation, the La Crosse project “appeared to have had a significant impact on end-of-life planning and decision making,” according to Respecting Choices. Of the 540 adult deaths in the La Crosse area studied from April 1995 until March 1996, 85 percent had written advance directives, and 96 percent of those documents were found in their medical records. Treatment preferences expressed in advance directives “seemed to be known by family and physician, and were typically followed.”

More than 80 communities or organizations across the country have initiated Respecting Choices programs, and the steering committee that has formed in Greater Grand Rapids has just signed an agreement for consulting by Respecting Choices, according to Ben Emdin.

Emdin, a long-time area business executive, community leader and former COO of Grand Rapids Public Schools, is chairman of the community steering committee for advanced care planning. The group is still in the formative stage; it had not yet announced a formal name when Emdin spoke with the Business Journal recently.

“What we want to accomplish is to make sure that the community honors a person’s choices at the end of life,” he said. “It’s really about honoring and respecting people’s choices.”

Emdin said that as people reach their 50s, it makes sense to do some planning in case there comes a time when they can’t speak for themselves, to ensure that their wishes are clear and they have named an advocate who can speak for them. He added that the first part of the group’s work is making people aware they should fill out an advanced care directive.

“We have to have the ability as a community to both store and retrieve those documents. That’s one of the big flaws now,” said Emdin. “A lot of people will say they’ve done this, but they don’t know where it is. Their loved ones may not have a clue what they put down. If they do get into a situation where they need to use the directives, often times it’s not very usable because people just don’t know where it is.”

“Then there is the big educational component — the ability to work with both patients and their families to help them go through a planning process,” Emdin said. Some people find it easy, but others need help, he added.

Emdin said there is also an educational component involving the health care community, “so that they understand how the system works and they are committed to respect and honor the choices people make, as well.”

When an individual is first diagnosed with a potentially life-threatening disease, many may want to look at their directive and make changes. “It’s a good point to review everything as a family,” he said. And when it becomes evident that there may be only a year or less left, that may again be cause for review.

“The process of committing that directive to a medical order is also an area that needs a lot of work,” he said, because it “gets involved in what individual health care systems will recognize and honor. It gets involved with state law.”

Some other groups around the state are looking at those legal ramifications, although that is not yet something the Grand Rapids area steering committee is dealing with, said Emdin. “That’s down the line,” he added.

Emdin said a “lot of different stakeholders from different directions” are involved with the committee, starting with all three major health care organizations in the area: Spectrum Health, Saint Mary’s Health Care and Metro Health. He said a number of foundations are involved, as are some of the larger senior living facilities, hospice organizations, representatives of the legal community and religious organizations. He did not want to name them because the organizational structure isn’t formalized.

“We are now beginning to plan a series of pilots that we would be kicking off probably sometime late in the spring or early summer,” said Emdin. The committee is “working with five or six different organizations in town” that will be involved in the pilot projects.

In addition to Munson in Traverse City, the Flint and Muskegon communities also are taking steps toward implementation of advanced care planning programs, according to Emdin, but he said it is the Respecting Choices program that the Grand Rapids committee is studying.

When asked if there were barriers to the project, Emdin said, “There are always barriers. Getting a series of complex community systems to work smoothly together is always tricky. We’re talking about three different health care systems, so you’ll get all kinds of considerations in each system.”

“All health care providers want to ensure that these orders are done right from a legal perspective, and we want to follow the wishes of the patient. Sometimes those two aims conflict,” said Flietstra.

Emdin said, “Fortunately, we really have people from all those systems very committed to this work. They know how important it is: It’s important particularly for individual families. We know that once people pass on, if the surviving family members feel their loved one’s wishes had been respected and honored, they feel much better about the death. There’s less depression, less confusion in the family. It’s just so much better for everybody.”

Emdin noted that a local physician who is very involved in the movement is Dr. Colleen Tallen, medical director of pain and palliative care at Saint Mary’s Health Care and director of cancer survivorship at the Lacks Cancer Center. Based on her own family’s experiences, she wrote a book published last fall called “Decide While You Can.”

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