Esther Levy, a mother who describes her family as “the luckiest of the unluckiest people in the world” offers an inside view of her struggle to balance hope and fear. Her story may lead to new insights about the challenge of figuring out what to hope for when the outcome you want most is not likely.
Dr. Paul Kalanithi's spectacular writing is the vehicle for sharing his clear and useful insights on facing death.
After the release of Kalanathi's best-selling book, When Breath Becomes Air, a NYTimes interview with his widow, internist Dr. Lucy Kalanithi, sheds light on the role writing the book played in their shared experience with his dying and her experience with moving on.
I want to share a posting by an 80-year-old physician-turned patient. Larry Zaroff is an MD-PhD cardiac surgeon who in his later years successfully scaled the peak of Chulu West (a 22,000 foot ascent) near the Nepal-Tibet border.
We're talking about what it means to "let go." Because if patients run out of treatment options or they are nearing death, "letting go" plays a major role in Healthy Survivorship. So here's another definition:
For cancer patients who run out of treatment options, how can "letting go" help in the pursuit of Healthy Survivorship? How can it hurt?
Writers choose words and phrases with care. In all my years of writing, only once or twice have I repeated a sentence word-for-word in a single essay. So when surgeon Nuland did so in How We Die, I took notice.
Most pages of my copy of Nuland's How We Die sport underlinings and check marks. On page 72, though, I drew a big question mark in the margin beside a paragraph that preceded another that earned a "great insight!"
Few questions evoke physicians' discomfort like “Doctor, how much time do I have?”In oncology it's a common question that comes with the territory, forcing clinicians and patients to grapple with issues of trust, hope, uncertainty, disappointment, and grief....
Dr. Nuland opens Chapter 2 of How We Die saying, "No one dies of old age, or so it would be legislated if actuaries ruled the world." Later in the chapter he introduces a perspective on aging that can serve Healthy Survivors well.
When young parents are dying, they face the loss of everything they know and hold dear. Arguably their greatest pain is losing the chance to raise their child(ren). To help such parents find hope in desperate times, I offer a suggestion:
A study designed to determine risks associated with hospitalization and delirium in patients with Alzheimer's Disease (AD) contains important lessons for Healthy Survivors.
James C. Salwitz, MD doesn't use the term Healthy Survivor. Still, the story he tells offers a name and face to the idea that patients in difficult circumstances can find Happiness in a Storm.
A reader commented on my last post, eloquently sharing his hard-won insights about grief. In doing so, he highlighted an important element of grief: time.
A blogger commented on part I of this series, "One friend, after five years of grief and going to therapy is still grieving, and it is hard for me to deal with what to say to her." Is this normal?
Perhaps most troubling to me of Hope or Letting Go, was Dr. Youn's question about whether the patient and his wife should be given a chance to say good-bye.
In my last post, Hope or Letting Go, I shared the story of a physician, Dr. Youn, still troubled by an incident that happened ten years ago. Since reading it, I've been bothered by some of the questions he posed.
For example, Dr. Youn asked if concern for the needs of the patient's loved ones ever take precedence over the patients' needs?
On my recent post about clinical trials, commenter Steve Walker wrote, "The Phase III trial is being run primarily to satisfy the rigid, formulaic and in many cases scientifically obsolete requirements imposed by the FDA's Office of Oncology Drug Products for most cancer drugs...."
Is the randomized clinical/controlled trial (RCT) obsolete?
In Phase I trials researchers test an experimental treatment in a few patients for the first time. The purpose is NOT to see if the treatment kills cancer cells, but only to:
What if the patients in a Phase I trial experience shrinkage of their tumors? Should this speed up FDA approval of the trial drug?
My last post introduced a dilemma regarding modern clinical trials: Is it ethical to randomize some patients to the "control arm" of a trial where they will NOT receive the trial drug?
According a NYTimes article, one particular trial of a therapy (called PLX4032) for malignant melanoma "ignited an anguished debate among oncologists about whether a controlled trial that measures a drug's impact on extending life is still the best method for evaluating hundreds of genetically targeted cancer drugs being developed."
Sunday's NYTimes ran an article tackling a complex ethical dilemma in cancer care: The witholding of treatment in clinical trials. Because I was treated in 3 clinical trials in the 1990s, the topic is close to my heart.
When a parent has late-stage cancer with limited life expectancy, everyone wants to rewrite the expected ending. The doctors and nurses, the parent with cancer, the family's loved ones and especially the children want to make it "all better."
If fairy godmothers existed, cancer survivors with late-stage disease who are rearing children might ask: "Fairy Godmother, can you give my family a vacation from my illness? Please?"
Now some parents can.
When my three children were young, every night I put them to bed one at a time. We'd talk for a few minutes before beginning our ritual interactive songs, tucking-in, kisses, "Nighty night" and lights out.
One evening as I began the routine with my youngest, he said something that practically stopped my heart: "Mom, do you remember when...."
After losing a loved one, you might feel that you've been left with a huge hole in your life. The "hole" houses your sadness, loneliness and emptiness along with other painful thoughts and feelings.
Naturally, many people try to get rid of the hole, say, by trying to fill in the hole or trying to run away from the hole. Not me.
What a three days I've had here at the 2010 Biennial Conference. While packing my suitcase for the return home, I'm thinking about all I've heard.
Posted at 09:19 AM in Action, Clinical Trials, Dictionary of Healthy Survivorship, Doctor-Patient Communication, End-of-Life, Family illness, Finances, Health care system, Healthy Survivorship, Hope, Knowledge, Post-treatment Recovery, Science, Uncertainty | Permalink | Comments (3) | TrackBack (0)
Tags: post-treatment survivorship
"Imagine you know you have only a few months to live. What would you do with your remaining time?"
Today let's look at her husband's view of the article. Robert Pardi's comments were posted on Pallimed to enrich -- or shall I say, to straighten out -- the discussion about his wife's decision. Although he doesn't use the term, he's telling us his wife was a Healthy Survivor.
In my April 6th post I discuss the case of Dr. Pardi, a palliative care physician who chose to continue aggressive cancer therapy when she was dying. Letters to the editor about the article don't mention what I consider to be a key point.
A NYTimes story of Dr. Pardi's dying illustrates that it is difficult to project what you will think or feel when faced with a grim prognosis.
Why would oncologists (or any physicians) not say "good-bye" when they know this is the last office visit for a patient before being transferred to hospice care?
Denise commented on yesterday's post "I would feel badly if my oncologist referred me to hospice, he said goodbye, and I had no further contact with him..." Is it unrealistic to expect oncologists to stay involved with patients who are now in hospice?
Commenting on a recent post, "Talking About Death,"Judy, an experienced hospice nurse, shares two illustrative experiences with end-of-life care -- one good, one awful.
A question came up: "What should an oncologist do if the patient and family insist on more treatment so the patient won't lose hope?"
Discussions about end-of-life can benefit patients and their families in dramatic ways. Unfortunately, the emotional discomforts for both physicians and patients often serve as insurmountable obstacles to initiating these important discussions.
A study at the Dana-Farber Cancer Institute and reported in JAMA may help.