Medical Decisions

When it comes to medical decisions, ongoing discussion ensures you make the call
11/21/2011

Published: Monday, November 21, 2011, 6:17 AM
Ann Byle | The Grand Rapids Press By Ann Byle | The Grand Rapids Press

The emergency room is no place to make medical decisions that require discussion among a patient, the family and the doctors involved in that patient's care. In fact, said Dr. Colleen Tallen, those discussions should be ongoing and long-term, so, when an emergency arises, everyone is on the same page.

"In the spirit of treating everyone with respect and dignity, our conversations about our life goals and end-of-life wishes should be part of everyday life," said Tallen, author of the newly released book "Decide While You Can" (BigBook Press, $18.95).

Tallen is medical director of pain and palliative care at Saint Mary's Health Care and director of cancer survivorship at the Lacks Cancer Center. She has walked patients and families through end-of-life discussions and decisions, and she experienced the pain of such decisions when her mother was sick.

"I'm a physician, but it was hard for me to maneuver through the health care system," she said. "The issue is complex on all sides: the health care system, patients, their loved ones and even the insurance providers."

'There are no for-sures'

Meredith Gremel, owner of Gremel Communications Inc. in Rockford, has faced these issues several times. The most recent came when her father, Richard Murphy, was diagnosed at age 68 with a malignant tumor.

Although he already had durable power of attorney and end-of-life directives in order, he chose an experimental treatment after undergoing chemo and surgery that did not bring a cure.

"What I think was lost in the discussion is that he went full bore into the clinical trial of chemotherapy without an understanding of how sick he may get from the side effects of the treatment. We know there are no for-sures in medicine, but we were not told of the potential side effects," Gremel said.

The treatment was very hard on Gremel, her mother and her siblings. Strong medications caused hallucinations in her father, as well as much physical pain in his last days. The treatment also accelerated the cancer's effect on appetite, causing her dad to lose weight and become weak.

"It was painful for us to watch him," Gremel said. "Had there been more discussion about how sick the treatment would make him, he might have decided not to go through it."

She is a firm believer in ongoing discussion about health care issues, as well as being prepared to questions doctors about what treatments could mean for quality of life.

When her son was born prematurely in 1990, she and her husband had to make decisions about which measures would be taken and which wouldn't. When their son experienced cardiac arrest and a grade-four brain bleed, they knew he wouldn't recover. He died five days after birth.

"You make medical decisions at all stages of life because, as parents, you make decisions for your children," Gremel said. "I'm certainly not saying you don't go after every option you can, but you have to weigh what the outcomes might be."

Both sides of the issue

Tallen knows full well the disconnect that can occur when families and medical professionals try to communicate. Each uses language the other doesn't always understand.

"Decide While You Can" is designed to help.

"I spend most of my time in my job sitting with families and helping them understand how medical decisions will affect their lives," she said. "Making medical decisions is complex."

The heightened need for such discussions among family members and their health care providers has come about for several reasons: We are living longer and experiencing that long life, as well as new technologies in health care, and consumer awareness about treatment options.

"And, while all that is happening, we're getting more fragmented — more specialists — which means we have more people, more agencies, more providers than ever before. We're past the place in medicine when there is one doctor doing all of a patient's care," Tallen said.

Tallen, in her job at Saint Mary's and in her book, spends much time considering the issues regarding how patients and health care providers can make choices regarding care while considering a host of ramifications.

"The way we've been able to talk about what it really means to have something medically done to you, to live day to day with those choices, hasn't caught up with how we do health care," she said.

Often, patients or families are asked to make a decision about a specific medical intervention, Tallen said, when the real question should be about how they want their lives to look after that intervention.

For example, a stage-four cancer patient may choose to not undergo radical treatment if that means her last year of life will be pain-filled and spent in hospitals. Or a patient may decline a medical test that involves invasive procedures.

The good news, Tallen said, is this is not lost on health care community leaders. They know coordinating care is difficult, that communication can be derailed and that accountability is necessary.

Talk openly

Tallen urges families to talk openly about what individuals want as far as medical interventions and end-of-life decisions. Our health changes every day, she said, and such discussions are important.

"Conversations around medical decisions have been derailed because they are related to death and the end of life. The sadness is that the spirit of true autonomy and of protecting who you are as a person gets lost in that," Tallen said. "We're so attached to the notion that these things should be done at the end of life that most of us don't have the discussion.

"It's better to have incremental conversations over a period of time rather than 11th-hour conversations in crisis."

She has a specific goal for "Decide While You Can," which she started writing seven years ago.

"I would love to start a real conversation that normalizes discussion around medical decisions that becomes part of our culture of cherishing our dignity and respecting our choices through the continuum of life."

"Decide While You Can" is available at Schuler Books & Music and through the website decidewhileyoucan.com.

TIPS

Advice for patients and doctors

Patients:

• Choose health care providers you respect and trust.

• Take time to learn your part in making medical decisions.

• Designate someone to speak for you in case you cannot speak for yourself.

• Talk openly with your designated decision-maker and your doctor about what "quality of life" means to you.

• Revisit your quality-of-life goals as your medical condition changes.

Doctors:

• Coordinate with other providers caring for a patient to understand the whole medical picture.

• Ask all your patients: Who will speak for you if you cannot speak for yourself? And: What are your quality-of-life goals?

• Explain how medical options will affect a patient's day-to-day life.

• Readdress care goals when a patient's medical condition changes.

Email: health@grpress.com

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