Experts: Make end-of-life decisions before you are too ill to do so

Doctor
Doctor

The most important - and most difficult - conversation of your life, ironically, may be to tell your family and friends how you want to die.

"You need to have the conversation now, so you are not in a situation where emotions are intense, you are stressed, and a family member is having to make decisions for you instead of carrying out your wishes," Paige Fletcher, of Aspire Health, told an audience at UTC last week. "We do a disservice when we use a 'battle' as a metaphor for fighting illness - It is not if we die, but how we die. Let's talk about it now, before we are dying, before all of those emotions come in."

"We live in a culture of denial of death," said Tarron Estes, founder of the Colorado-based Conscious Dying Institute. "If you go to the doctor, eat good food, run a mile, get on the whatchamacallit - we are not saying it out loud, but there is something in our culture that says we can defy death."

"We are starting to realize we're not dying well in this culture right now," Fletcher said.

Thursday's panel discussion, sponsored by the University of Tennessee at Chattanooga School of Nursing, focused on end-of-life decision-making.

All four panelists agreed the most important action for anyone to take is to talk with family and friends about how he or she wants to die.

"I want my decisions to be upheld," said Fletcher, whose health care service provides palliative care for patients with serious illnesses. "The only way to do that is to talk about it."

Added Bob Scheri, CHI Memorial vice president for mission integration, "There is no way to get through this difficulty except to do it. Put the [Thanksgiving] turkey on the table, and announce that afterward we will have an important conversation. And then see what kinds of questions surface."

As a practical first step, Scheri recommended writing a "living will," which is also sometimes referred to as an "advance care directive." (You can download a form at bit.ly/TNAdvanceDirective).

The advance care directive tells your doctors and family members what you want to happen if you are physically or mentally unable to tell them yourself, for issues such as resuscitation or what to do if you are in a vegetative state.

Attorney Leah McElmoyl, of Chambliss, Bahner & Stophel, recommended giving financial and health care power-of-attorney documents to family members or friends. While the advance care directive tells doctors what to do in certain circumstances, the power of attorney allows someone to make decisions in situations you didn't think about.

The financial power of attorney is important, McElmoyl said, because often bills will need to be paid or money spent but no one is authorized to access your bank account or credit card. Family members can go to court and get a surrogate appointed to make those decisions, but it is easier and cheaper to sign a power of attorney, she said.

And just signing the documents is not enough, Scheri said, you also need to be certain someone has access to them and knows what is in them.

"You say, 'I'll put it in my safe deposit box,' and then 30 days after you die your family gets access to your bank account and sees what is in the box and says 'Oh, so that is what Grandpa wanted to happen.'"

It's important that family and friends know your wishes, the panelists agreed. Your advance care directive may say you don't want life-sustaining measures taken if you are irrevocably ill, for example. But does that mean you don't want to be given antibiotics if you get the flu when you have incurable cancer and two or three years to live?

You should also think about palliative and hospice care. Palliative care is aimed at people with serious diseases such as cancer, heart or lung disease, or those who are on dialysis that is not yet fatal. Hospice is for those in the final six months of a terminal illness.

"If you are in those earlier stages of a disease, palliative care is what you will want, to maximize your wellness and extend your life. You can at the same time be receiving treatment meant to beat the disease," Scheri said. "When you move to a hospice, you are moving to your last six months, when you are no longer doing anything curative trying to beat the disease."

Palliative care can make it easier to cope with a serious illness.

"The two goals we have are to control the symptoms you are having and to help you get clarity as to what gives your life meaning and purpose," said Aspire's Fletcher.

A hospice can relieve family members of the need to provide care for someone who is terminally ill.

"The sad thing is, what we often don't learn is how helpful it is for the family to have those services," said Estes, of the Conscious Dying Institute, "how it relieves the burden of care so people can focus on the love and deeper elements of life."

Estes shared a form she uses to get people to think about end-of-life issues. Under the heading of "Spiritual," for example, she asked what specific actions someone would want taken to meet their spiritual concerns.

Do you want a friend to read the Lord's Prayer at your funeral? If so, have you told her about it and does she live nearby? Or if you would like to be reconciled with a family member, what steps would you need to take to do that? Perhaps write a note to them, asking their forgiveness for some of your actions and requesting a minister to deliver it after you die?

The point, she said, is that you need to consider those end-of-life issues, decide what you want to happen, and then figure out what you need to do now to ensure they happen, before you are mentally or physically unable to do so.

And don't assume your family members know your desires, Scheri said.

"They remember Dad when Dad was a fighter, when nothing got in the way of something blocking him. They remember us from the stages of life that are most important to them growing up," he said. "They are not necessarily tuned in to what we want now, what is too much for us, what we are at peace and ready for.

"That conversation needs to happen."

Contact reporter Steve Johnson at sjohnson@timesfreepress.com, 423-757-6673, on Twitter @stevejohnsonTFP, and on Facebook, www.facebook.com/noogahealth.

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