Monthly Archives: November 2014

“How long have I got left?”

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This is a New York Times article written by Stanford neurosurgeon Dr. Paul Kalanithi about being diagnosed with advanced-stage lung cancer in 2013.

By the way, one of our local support group members went to undergrad with Paul, and had this to say:  “he is such a warm, intelligent and funny person. I’ve been blown away by his story and how he has handled his diagnosis and shared his insights with the world.  A true gift.”

What first drew me to the NYT article was the discussion about statistics and prognosis.

Many of our local support group members who are caregivers (myself included) want to know how long their loved one has left to live with a neurological disorder.  And many of our local support group members who are those with a neurological diagnosis also want to know how long they have left to live.  Not everyone asks these questions but many do.

In reply, I recite the averages based on published research with confirmed (through brain donation) cases.  But no one can know what an individual’s prognosis is.

It was interesting to read Dr. Kalanithi’s new take on the prognosis question.  After he got a lung cancer diagnosis, he asked the same question of his oncologist:

“But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. … She flatly refused: ‘No. Absolutely not.’ … At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.”

“The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. … My oncologist would say only: ‘I can’t tell you a time. You’ve got to find what matters most to you.'”

Eventually, Dr. Kalanithi has a revised view on the statistics and prognosis question:

“What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

As you can probably tell, the entire article is worth reading.  Here’s a link to it:

www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html

SundayReview | Opinion
How Long Have I Got Left?
New York Times
By Paul Kalanithi
Jan. 24, 2014

Robin

Having a “palliative care conversation”

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For the last several years, I’ve been attending the annual Jonathan King lecture at Stanford.  King had cancer and started a lecture series before he died to get across two messages to MDs:

  • they must empathize with their patients
  • they must foster a patient’s feelings of control and hope

This year’s lecture on October 21st was remarkable.  Palliative care expert Timothy Quill, MD, gave a talk about the importance of palliative care.  He said that palliative care is for the seriously ill with “a high symptom burden”, while hospice is for the terminally ill.  In palliative care, there are three thoughts:

  • we hope for the best
  • we attend to the present
  • we prepare for the worst

Dr. Quill noted that all physicians should be able to have a palliative care conversation with their patients.  The conversation includes open-ended questions such as:

  • what is the best that might happen
  • what is the worst that might happen
  • is faith important

Quill believes that “doctors should address the emotional ramifications of illness, as well as the medical treatment plan, with their patients.”

Though Dr. Quill’s lecture was very good, what made the event so remarkable is that he had a palliative care conversation with a Stanford neurosurgeon who was diagnosed last year with advanced-stage lung cancer.  Dr. Paul Kalanithi, the cancer patient, was very open about his thoughts and feelings.  I first read about Dr. Kalanithi in January 2014 as he authored an article in the New York Times about being diagnosed and wondering what his prognosis is.  It was an honor to meet him in person.

Stanford Medicine published an article about Dr. Quill’s conversation with Dr. Kalanithi.  I hope the wonderfulness of the event comes across in the article.  Here’s a link to it:

med.stanford.edu/news/all-news/2014/10/a-conversation-with-a-cancer-patient-facing-the-end-of-his-life.html

A conversation with a cancer patient about palliative care
Stanford Medicine News Center
October 22, 2014

Robin