End-of-Life Choice, Palliative Care and Counseling

Posts TaggedAdvanced Directive

Movement Grows in Planning End-of-Life Strategy

by T.J. Greaney
Columbia Daily Tribune
January 9, 2013

Kathe Ward could see that her mother was slipping away.

Suffering from advanced Alzheimer’s, the 77-year-old passed her days in a nursing home bed, unable to speak, sit up or control her bowels. So Ward, a St. Louis registered nurse, asked a lawyer to draw up a document forbidding medical personnel from aggressively trying to prolong her life by using CPR, dialysis or a ventilator.

Known as an “advance directive,” the document signed by her mother, with Ward’s help clutching the pen, gave Ward power of attorney in health care for her mother.

“I felt like I knew her well enough to know she wouldn’t want to linger in the state she was in,” Ward said of her decision in 2005 to prepare an advance directive. “But I knew there was a possibility she could have lived in that state for another 10 years.”

In 2007, when her mother stopped breathing correctly and a feeding tube implanted in her stomach fell out, Ward relied on the legal document to help her make the wrenching decision to let her mother die despite some resistance from siblings. “Had it not been for me really taking the bull by the horns and saying, ‘We are not taking her to the hospital to put another tube in her stomach,’ then I think my sisters would have just said, ‘We want everything done,’ ” Ward said. “And it would have been much harder for them to let go. And it would have been prolonged.” More

My Experiments With Aging and Dying Naturally

by Tom Walz
December 26, 2012

Most of us who grow old become conscious of our aging. Our bodies and minds give us daily reminders. Life changes. Typically we retire from our employment and think about seeing and doing things not possible when we were working.

Retiring at age 67 in 2001, I worked out something of a plan for my remaining years based on some beliefs. Included were the following.

• 1) How to keep doing what I had being doing for as long as my mind/body would let me.

• 2) How to control the decisions that may be associated with my aging and dying.

• 3) And how to reduce the high cost of dying and simplify the event.

Reverse retirement: Rather than retire, I wanted to renew my life’s work life and stay with it to the end. It wouldn’t matter how slow and inefficient I might become. Just keep going.

A par golfer at the end might have a 24 handicap, but enjoy the game even more. After retirement at age 67, I found a way to keep working. Though unpaid, the full time I have put in as a volunteer for a nonprofit serving persons with disabilities has been “ health” giving. More

Death Observed: Honoring a Parent’s Directive

by Anthony B. Robinson
November 16, 2012

I wasn’t there for my father’s death 10 years ago. It’s not so much that I feel guilty about that, though I do. Mostly I feel sad. I wish I had been there. He’d had Alzheimer’s for several years. He shouldn’t have been alone.

This time, with my mother’s death, I was there.

Or was I? Death came so silently, so unobtrusively, that we missed it, I think. My sister held my mother’s left hand. I clutched her right. When I noticed that my mother’s face had been unchanged for a minute or so —  jaw slack, eyes open — I checked her pulse. But I couldn’t find it.

“I’m not getting a pulse,” I said to my sister, who moved her hand to my mother’s neck. “I’m not either,” she said after a few moments.

We did not panic. We were not — and more importantly — my mother was not wanting “extraordinary measures.” No “code blue” with all that noise and commotion. Still, I pressed the “nurse call” button. “Yes?”

“We’re not getting a pulse.”

“We’ll be right there.”

In a moment a nurse was with us. She uncoiled her stethoscope, like a snake, from around her neck. She pressed its listening end to my mother’s chest. “No pulse,” she confirmed silently. Death had come. After almost 95 years. More

Struggling: End-of-Life Conversations

by Patricia Patton
Huffington Post
November 17, 2012

It is the end of life.

My sister lies in her hospital bed, and I am being challenged to set her free. But what I really feel like doing is SCREAMING at the top of my lungs. The doctors have finally stated, “We can make her comfortable.” That means the family must now shift gears and face our reality.

I had been managing my sister’s emotional care from across the country. In truth, her husband had been her primary caregiver and I was his wing wo/man. I had been criss-crossing the country, trying to help her experience some joy by staying close to her and by helping her heal old wounds with her adult children. The downward spiral had begun in earnest at least 18 months before. However, consistent with our black southern tradition, my family had not taken even one of the AARP recommendations for those preparing for death. Why? Because of religious beliefs and my sister’s children and her husband were in denial. Also they really didn’t know what to do.

AARP research has found that 46 percent of family caregivers perform medical/nursing tasks for their patients who are suffering with multiple chronic physical conditions. My sister had been suffering from kidney failure and breast cancer among other things. So her husband was indeed a part of this 46 percent statistic. He was also one of the three out of four (78 percent) caregivers who managed medication, including administering intravenous fluids and injections. He performed these tasks to avoid institutionalizing her because their financial resources would not have allowed for assisted care or live-in help.

So, as I was saying, there we are in the hospital and clearly we are approaching the end of her life. The sister I know is gone, even though her body is lying in the hospital bed. Technically she is still here, thanks to a ventilator — but I don’t think this could be called living. More

Advance Care Planning Affects the Smallest and Biggest Decisions

by Mary F. Mulcahy
Huffington Post
November 14, 2012

Jane has voted in every election since she was 18. Now 33, she’s disappointed that she missed heading to the polls for the first time last week. But Jane has a lot of things to be disappointed about. She knows she is going to die soon. She knows that she will not survive long enough to see the benefits or consequences of her vote. So in the company of less than 60 percent of age-eligible voters in America who exercise their right, why did Jane want to cast her ballot? She votes to fulfill her civic duty. She votes because she believes her vote makes a difference. She votes to impact her daughter’s life. She votes to maintain some normalcy in her own life.

Jane was diagnosed with liver cancer at the age of 31 — a rare occurrence in someone so young and with no underlying disease. She had surgery, but her cancer returned. Since then, she has undergone other operations and has pursued standard and experimental therapies. She has exhausted every medical option available, and now Jane has changed her focus toward creating memories and a secure life for her 1-year-old daughter.

When her cancer returned, Jane and I had a difficult discussion about her future through the process of advance care planning. We identified personal goals and values that defined her own acceptable quality of life. We identified the characteristics and features that define her self-worth. Jane is a single mother, a teacher, a daughter, a sister, a member of her community.

As a single mother, Jane recognized that her daughter’s well-being was to be the focus of what life she has left. Certainly, she dreams of watching her daughter grow up, attending her graduation, and seeing her grow into an independent woman. Despite Jane’s own young age, she is able to realize that death is inevitable, and she has taken steps to control what she can. More