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Planning End of Life Care

Michele Tripi and her family, Seven Hills, Ohio
Michele Tripi and her family, Seven Hills, Ohio

[Elvis Presley's Fools Rush In starts to play: "Wise men say, only fools rush in," then fades to low and stays underneath]

This is the first song Michele Tripi and her husband Joe danced to.

[Music bump: "But I can't help falling in love with you" ]

MICHELE TRIPI: Fools Rush In, by Elvis Presley.

Tripi is a long-time school teacher from Seven Hills.

[Music fades out]

She's in her fifties, and for two years now she's lived with ALS--also known as Lou Gehrig's Disease.

The inevitable end stage is paralysis of the body.

MICHELE TRIPI: We've made funeral plans, medical decisions…

JACKIE PFADT: ..medical decisions, advance directives of what you want to have done, what you don't want to have done.

That's Tripi with her daughter Jackie Pfadt.

PFADT: Some of that is hard, because it's morbid and sad, but it's…

MICHELE TRIPI: It's like the elephant in the room. Nobody wants to talk about it.

Even thinking about end-of-life care can be emotionally wrenching for many families and people have many concerns about all the paperwork that goes with advance planning for death.

AULISIO: …Is it a form of assisted suicide?... Does it mean that corners will be cut or I won't get as good a care?

Mark Aulisio is a professor at Case Western Reserve University and directs MetroHealth's Biomedical Ethics Center.

AULISIO: Anytime you get documents that address end of life issues, the whole constellation of concerns that we humans have, are dredged up.

Do you want CPR? IV fluids? Feeding through a tube? Antibiotics?

University Hospitals physician Elizabeth Weinstein has the job of guiding conversations about this.

WEINSTEIN: The goal really is to match our interventions with their values.

One option is a medical power of attorney.

It gives responsibility for decision making to someone you've identified in advance that you trust.

A more detailed advance directive is a "living will."

It spells out - in writing - what care you would want, for example, if in a vegetative state or near death.

Sometimes though living wills are nowhere to be found in an emergency or ignored by medical personnel who fear lawsuits.

WEINSTEIN: So the living will is not a doctor's order; it's the patient's legal document.

And there are other limitations.

WEINSTEIN: So what often happens is the orders that are good in a particular hospital are good only for that hospitalization, and only at that particular hospital. So they don't go with the patient to the hospice, or they don't go with the patient to the nursing home.

To address these gaps, another form has emerged: A POLST, which stands for Physician Orders for Life Sustaining Treatment. In some places it's called MOLST, Medical Orders for Life Sustaining Treatment.

As the name suggests, these are actual medical orders signed by a physician, directing when resuscitation, intubation, artificial nutrition or other actions may be taken or withheld.

The orders can be implemented immediately, when circumstances warrant.

Often they are stored and easily accessible in an electronic registry.

Fifteen states allow these POLST and MOLST forms but others, including Ohio, have moved more slowly.

Opponents in some states are Catholic Bishops; among their objections?...that end-of-life decisions are too complex to make in advance.

Advocates have been campaigning to bring the form here to Ohio for seven years.

Some, including Jeff Lycan, say this just might be the year.

LYCAN: I am optimistic that we will have a bill that's placed and that it will be a supported bill.

And some groups who've objected in the past are taking a more neutral stance now.

Stephanie Krider is legislative affairs director for Ohio Right to Life.

KRIDER: It's been clear to me that they're just trying to simplify medical procedures for physicians and other medical workers.

The key thing, Krider says, is that using the form remains voluntary.

KRIDER: No one has to fill out a MOLST form.

The default position when there's no advance directive of any kind is to provide full medical treatment. That may extend life but doesn't always enhance it.

anne.glausser@ideastream.org | 216-916-6129