Why We Write About Grief

Image from NY Times article

The authors Joyce Carol Oates and Meghan O'Rorque opine in the NY Times about why they, and others, write about grief.

In this insightful e-mail conversation, "Ms. Oates and Ms. O’Rourke discussed how they wrote about their own grief and why the literature of loss resonates with readers today. The dialog, which has been edited for length and clarity, began by asking them what led them to write about their experiences."

Brittany Maynard is a 29 year-old woman with an inoperable glioblastoma multiforme.  She has chosen to die Nov. 1, 2014 in her bedroom in Portland, Ore., surrounded by family — her mother and stepfather, her husband and her best friend, who is a physician. She said she wanted to wait until after her husband’s birthday, which is Oct. 26.

Deborah Alecson found this post.  It should stimulate some discussion.

Also see The Brittany Maynard Fund To expand the death-with-dignity options to all.

The PBS News Hour featured Ms. Maynard's case on October 14, 2014. The discussion between Ira Byock (key Hospice and Palliative Care physician) and Barbara Coombs Lee (Compssionate Choices)

Brittany Maynard did end her live in accordance with the laws of Oregon on November 1.  Here is her last video (Huffington Post).

Being Mortal (2014)

Book review by Abby Zugar, NY Times, October 7, 2014

In this book, “Gawande has turned his attention to mortality, otherwise known as the one big thing in medicine that cannot be fixed. In fact, the better doctors perform, the older, more enfeebled and more convincingly mortal our patients become. And someone should figure out how to take better care of all of them soon, because their friends, neighbors and children are at their wits’ end.

"It is one thing to understand this helplessness, as most young doctors do, by watching the trials of patients and their families; as an observer Dr. Gawande has visited this territory before.

Abby Zugar’s engaging review of Being Mortal is a good introduction to this book.

See also, Gawande's essay in the NY Times:  The Best Possible Day.

Also see Paula Span's review for A Caregiver's Bookshelf A Doctor Discovers Dying.

DJE's notes from Being Mortal.

Atul Gawande delivered four talks based on this book for the BBC.  They are well-worth accessing.

The Best Possible Day

Atul Gawande, a cancer surgeon and author, was concerned that his colleagues and he were not handling end of life matters well with their patients.  He researched a book, Being Mortal (October 2014) on what has gone wrong with the way we manage mortality and how we could do better.  He writes:

“I spoke with more than 200 people about their experiences with aging or serious illness, or dealing with a family member’s.  Among the many things I learned, here are the two most fundamental.

First, in medicine and society, we have failed to recognize that people have priorities that they need us to serve besides just living longer. Second, the best way to learn those priorities is to ask about them.

I also discovered that the discussions most successful clinicians had with patients involved just a few important questions that often unlocked transformative possibilities:

(1) What is their understanding of their health or condition?

(2) What are their goals if their health worsens?

(3) What are their fears? and

(4) What are the trade-offs they are willing to make and not willing to make?

These discussions must be repeated over time, because people’s answers change. But people can and should insist that others know and respect their priorities."

Full NY Times essay: The Best Possible Day.

Letters to the Editor.

Dying Without Morphine

An African Cancer Patient Dying in Unnecessary Pain

"Imagine watching a loved one moaning in pain, curled into a fetal ball, pleading for relief. Then imagine that his or her pain could be relieved by an inexpensive drug, but the drug was unavailable.

Each day, about six million terminal cancer patients around the world suffer that fate because they do not have access to morphine, the gold standard of cancer pain control. The World Health Organization has stated that access to pain treatment, including morphine, is an essential human right.

Untreated cancer pain is a human disaster not unlike famine; its victims are starving for relief. But as the Ugandan experience shows, there are easy-to-implement, cost-effective health care models that could rapidly deploy morphine to cancer patients around the world."

Dying Without Morphine is an important Op-Ed piece from the NY Times (October 1, 2014)

Over 100 years ago, Osler called morphine "God's Own Medicine."  It is cheap and effective, but it has been demonized and is not available around the world to the people who need it most.

Gerald A. Larue, Obit

Gerald A. Larue, an ordained minister, scholar and eventual agnostic who, as the first president of the Hemlock Society, was an early and leading advocate of giving the terminally ill the option to end their own lives, died on Sept. 17 in Newport Beach, Calif. He was 98.

His son, David, said the cause was a stroke.

“We had the chance to put him on a ventilator,” David Larue said, “but given that he’s the founding president of the Hemlock Society, I’d discussed that with him and knew that was not what he wanted to do.”

Full Obit, NY Times, September 27, 2014.

Fighting to Honor a Father’s Last Wish: To Die at Home

This extraordinary, long, sad article in the September 26, 2014 NY Times, documents the last couple of years of a 92 year-old man’s life. He served our country in WWII, worked for the U.S. Postal Service and was a law-abiding citizen.  His wish was to die at home and his daughter tried to honor that, but the Medical-Industrial Complex is ill-designed to allow this.  This article is mandatory reading, not just for KOHD, but for any sentient individual concerned with how we die in America.

“Yet the system was never engineered to support families through this, and its financial incentives reward harmful transitions among homes, hospitals and nursing homes.

“We have these frail older people moving about in the medical-industrial complex that we’ve constructed,” Dr. Teno said. “It’s all about profit margins. It’s not about caring for people.”

Many geriatric experts say that if the wasteful medical spending on this stage of life could be redirected, it could pay for all the social supports and services actually needed by today’s fragile elders and their families. Instead, public money has been shuffled in the same system, benefiting health care businesses but not necessarily patients.

“To Dr. Joanne Lynn, a veteran hospice physician consulted for the Institute of Medicine report, the problem goes beyond perverse financial incentives. Most developed countries spend much less on medical care over all than the United States, but nearly twice as much on social supports.

“Why can I get a $100,000 drug but I can’t get supper?” she asked, pointing to the budget sequestration that slashed federal spending on meals for seniors last year.”

“It was the nurses aides who mattered most and earned the least, Ms. Stefanides reflected. The primary care physician whom GuildNet assigned to her father never met him. The nurses who showed up to treat his deep ulcers kept changing. Yet the two aides who split the week as “live-ins” were paid so little by a subcontractor that they had to take second jobs, they told her.”

“The records his daughter obtained showed that in the last year of his life, his care cost at least a million dollars. Was that the best, she wondered, that a million dollars could buy?

Click "Fighting to Honor a Father’s Last Wish: To Die at Home" to access full article.  

See also, IOM article on End of Life issues.