Wednesday, March 17, 2010

A Fatal Diagnosis, Followed by Goodbyes

March 15, 2010, 4:07 pm

By THE NEW YORK TIMES

Jan van den Brink

In Tuesday’s Science Times, Personal Health columnist Jane Brody writes about her husband’s final days with Stage 4 lung cancer. She begins:

This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.”

Read the full column here, “When the Only Hope Is a Peaceful Ending,” and please share your thoughts below.

Personal Health
When the Only Hope Is a Peaceful Ending
By JANE E. BRODY
Published: March 15, 2010
CloseLinkedinDiggFacebookMixxMySpaceYahoo! BuzzPermalink This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.” You never know when your time will be up, and so it is best to prepare for the end sooner rather than later.

More Personal Health Columns
On Feb. 2, we learned that my husband of 43 years had Stage 4 lung cancer. There was no asking “Why me?” Richard knew very well why. He’d been a pack-a-day smoker for 50 years. Although he quit for good more than 15 years ago, it was far too late. After a few weeks of encroaching weakness and coughing, a PET scan showed that cancer was ravaging his body, taking up residence in both lungs (along with emphysema), in his spine, his adrenal glands and his brain. It was inoperable and incurable. He was looking at weeks or months of remaining life, maybe a year at most.

Long before this diagnosis, we had discussed and written down our wishes if either of us faced such a dismal prognosis. At nearly 77, Richard felt he had already cheated the grim reaper despite his long addiction to nicotine. He wanted nothing to do with drastic therapies that might grant him a few extra months at the expense of his comfort and his ability to do what needed doing before he died.

His choice — affirmed by the doctors we consulted — was for palliative treatments aimed at minimizing his pain and maximizing his function. As his health care proxy, I had long ago agreed to such a plan. Our sons and daughters-in-law knew him far too well to try to persuade him otherwise.

Treatment and Comfort

For his comfort and our convenience, we stayed with local doctors at our local hospital, New York Methodist, an affiliate of Weill Cornell Medical College. I was extraordinarily impressed with the intelligence and sensitivity of the doctors we saw: our primary care physician, whose specialty is geriatrics; the pulmonologist, who made the diagnosis and provided a pretty clear picture of what was ahead; an oncologist, who strongly recommended palliative radiation (which could, if Richard wanted it, be followed by gentle chemotherapy); a radiation oncologist, who explained how radiation could help control pain; and a neurologist, who periodically assessed his physical limitations.

We were warned of two potentially disastrous complications. Richard was already suffering from severe sciatica attributed to the spinal tumors, and we learned that these could cause permanent paralysis if they impinged on the spinal cord. The brain lesions could bleed and cause a hemorrhagic stroke. And his balance, which we realized in hindsight had been declining for months, was also at great risk from lesions in the pons, near the top of the brainstem.

And so he began three weeks of radiation to his lower spine and whole brain. For a week, though the city was blanketed by snow and his balance was iffy, he was able to walk himself with a cane to and from the hospital for treatments. But 10 days from the start of radiation, he awoke unable to walk, and the oncologist said he had to get to the hospital without delay.

The paramedics who responded to the 911 call were amazingly gentle and reassuring. A magnetic resonance imaging test of the spine and brain revealed no tumor to explain this handicap, prompting a probable diagnosis of swelling caused by the cancer, the radiation or both.

And so began a two-week hospital stay marked by increasing pain (and increasing doses of narcotics to control it), extreme weakness and constipation caused by the narcotics. Richard thought there was no point in continuing treatment; he’d never get any better or leave the hospital alive. His doctors thought otherwise and urged him to continue the radiation, along with medications to counter the swelling and constipation.

My goal, my hope, was that he would live just three more weeks and be well enough on March 26 to attend a musical celebration of his life’s work as a lyricist, at which friends and family from far and wide could say goodbye.

On the sixth morning of his hospitalization, his bowel congestion finally relieved, he awoke pain-free and cheerful and announced, half joking, “Today, I almost feel like living.” I began to breathe normally again, no small thanks to the capable and conscientious oncology nurses and nurse technicians, whose cheerful demeanor seemed able to inspire a will to live in a corpse.

A Final Journey

But this was to be only a brief reprieve. After two weeks of radiation, it became obvious that the treatments were only adding to his misery, not relieving it — every touch, every movement seemed to hurt him — and he was no longer able to get out of bed. Encouraged by my sons and their wives, who saw no point in prolonging his agony, I reluctantly abandoned my March 26 goal and arranged for hospice care.

Francine Russo put it succinctly in her excellent new book, “They’re Your Parents, Too!” (Bantam, 2010): “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.”

And so the next day, I got in the ambulance with my husband for his transfer to Calvary Hospital, a lovely, peaceful hospice whose Brooklyn campus is at Lutheran Medical Center. The hospice physician reviewed his pain medications and immediately suggested changing to a continuous morphine drip, which greatly relieved his discomfort and my gnawing distress over watching him suffer. Nothing more to worry about, no more decisions to make.

Three days later, it was apparent to all that the end was near. He had stopped eating, no longer uttered a word and slept almost all the time. Knowing that hearing is the last sense to go, we continued to talk to him, saying how much we loved him, reading the many incredible letters and e-mail messages sent by family and friends, and wishing him a peaceful end.


Cancer, end of life Related Posts
From Well
Lessons From Hospice Care
The Wrong Care for Dementia Patients
Whose Death Is It Anyway?
Talking to Patients About Life’s End
Planning for Death When You’re Healthy
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1. March 15, 2010
4:25 pm

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I hear the love in your column. It is generous of you to share.
Judi

— J. MA

2. March 15, 2010
4:30 pm

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My mother is going throught the same thing. she is presently home with hospice care and malignant stage 4 lung cancer. Jane brody was fortunate to have what sounds like great doctors who took their time to walk them though every step. It took 2 months for my mother to get her eventual diagnosis. in that time whe went from walking, talking and eating like anyone else- to bedridden and only uttering a few words. Now on morphine every few hours – we just wait til the end and hold her hand.

— laurie

3. March 15, 2010
4:42 pm

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May his memory be eternal.

— Stamatia

4. March 15, 2010
4:44 pm

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Having heard so much about your life and family over all these decades, and from your stories learned so much, I am very sad, and like the reader above, marvel at your strength and generosity in sharing it with all of us.

— Lucy

5. March 15, 2010
4:44 pm

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My deepest condolences to Ms. Brody on the loss of her husband and lifelong partner.

I had absolutely no idea–and having been a faithful Jane Brody reader for over 30 years, I feel so sad–as one does when they discover that a friend has been going through some life tragedy–and you hadn’t a clue.

Thank you for sharing this poignant, honest, and uplifting personal story.

It’s been almost a year since my mother-in-law passed away from cancer–and she too made the decision to forgo treatments when that “tipping point” between real living and just enduring finally arrived.

“The Good Death. She Did It Her Way. At Home, With Family, Without Pain, In Comfort”

http://www.happyhealthylonglife.com/happy_healthy_long_life/2009/03/endoflife.html

— The Healthy Librarian

6. March 15, 2010
5:37 pm

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My condolences to you, Ms. Brody. My husband was diagnosed with the Stage 4 Lung Cancer, only his journey was a 6-month version of your husband’s, and until the final day, he was at home (palliative care having begun, with radiation too, three months into the dying, after stopping the pointlessly aggressive treatments). It would be merciful, although expensive, to have hospice facilities far more widespread than currently is the case: part of the hardship was never knowing quite when his meds needed further adjustment, or if I could have made him feel more comfortable as each symptom progressed. I have much more respect for the human race now that I see what everyone has to experience–and miraculously does!

— alix Nelson-Frick

7. March 15, 2010
5:55 pm

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Thanks for sharing the deeply personal experience with death and dying of a loved one and for writing about your journey.

This type of reflection is so key the healing process, which goes on in different phases for a long, long time.

My best to you, Erik and Loren. (I knew Erik–a great sports fan–Davenport ‘91er).

You and your readers might like this recent post:

http://glasshospital.com/2010/02/25/a-good-death/

-Dr. John (GlassHospital)

— John Schumann, M.D.

8. March 15, 2010
6:06 pm

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Thank you so much for this. I am going through something quite similar with my beloved now. While extremely difficult it is also a wide and rich experience and I have learned more about human nature than I ever expected to in my lifetime.

— Elizabeth

9. March 15, 2010
6:09 pm

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Thank you for sharing this. It is so important for people to “hear” this from somebody with your knowledge and authority.

— miriz

10. March 15, 2010
6:22 pm

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I grieve with thee. Thanks for sharing something indeed quite deeply personal; I am sure that it will be of great help to other families in the same situation. May you find comfort in memories and family.

— ClaireNYC

11. March 15, 2010
6:25 pm

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My brother and I found the hospice services offered by Kaiser Walnut Creek (CA) were invaluable in easing the final months of my mother’s decline due to congestive heart failure and dementia. All too often, people wait until very late in the process to access these services; my mom was able to benefit from them for more than 12 months because after nearly dying last January, she rallied. They could not help her rapid mental decline, but did ensure she suffered as little pain as possible, and relief when experiencing episodes of difficulty breathing. While we miss her enormously, we wouldn’t wish such an end on anyone–except for the blessing of hospice!

— Jenell Mahoney

12. March 15, 2010
6:30 pm

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Two months ago my brave 53-year old husband breathed his last breath approximately one year after his diagnosis with stage IV lung cancer. He did opt for some aggressive treatments and through the (relative) success of those treatments and his ability to tolerate them was able to see his third son get married, spend Thanksgiving with his niece at her first home, host (with me) a 10 day house party in Key West for family and friends, see the Grand Canyon, go to his favorite small lake in Wisconsin many times, for decent intervals with family, kayak, sled with his grandsons, host numerous friends and family for visits at our home, gamble at Bellagio, get his house in order in all meanings of that phrase, and at the end die peacefully with the statement that he died without fear or regrets. [He also quietly and independently did not swallow the last course of treatment, Tarceva, even though it had been prescribed. Enough was enough.]

— lin

13. March 15, 2010
6:31 pm

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Thank you for sharing, Ms. Brody. You have affirmed what I had already decided about end of life issues; I am truly grateful.
Peace.

— lq

14. March 15, 2010
6:36 pm

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I am sorry for your loss. My mother read and your clipped your column for years. You helped her with health issues from the 1970s until Alzheimers robbed her of her comprehension. Last December, we helped my mother die at home. I wrote about how we were giving her a good death for Christmas in a blog. The next day she died with all of us with her. She gave us a gift, too. The gift of acceptance.
http://caroljadams.blogspot.com/2009/12/i-will-do-my-part-giving-christmas-gift.html

— Carol J. Adams

15. March 15, 2010
6:40 pm

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I wish it was otherwise

— first year medicine resident

16. March 15, 2010
6:43 pm

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“When you need lesson along comes teacher.”

Thus it is that Jane Brody has given us nearly a parable for peaceful endings; highly personal, distinctly individual, a complete text for visualization of the quirky nature of the path that lies ahead for each of us. The key is acknowledging that the precipitous drop of death’s intrusion is long in the making.

We do not get to design a disability or the terms of death. Taking two lines from Hamlet,

“Readiness is all.” “The rest is silence.”

— Bill

17. March 15, 2010
6:44 pm

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I am so sorry for your loss, and thank you for sharing it with us. I have enjoyed your columns for a long time and am both grateful and sorry to have read the latest one. Wishing you peace.

— julia

18. March 15, 2010
6:51 pm

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Read your aricle as it caught my eye after we buried our brother this Fall after his 3 year bout with pancreatic cancer. Very similar experience with the final days. I do think there should be more guidelines for patients and families as to just when to stop treatments. Doctors always held out new procedures and new meds that might save his life, but the statistics do not show any improvement in the 2% who survive. The end is a cruel journey for both the victim and the families. We are left to make decisions that anyone wouldbe ill-equipped to make. The US Medical system needs guidelines for failure as well as success. SFS

— Sheila Stone

19. March 15, 2010
6:51 pm

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I hope Ms. Brody’s deeply personal column will touch many lives. As a caregiver to my husband, who had kidney cancer, it was so hard to focus on what he needed as he was dying rather than on my own anguish. I am very grateful to Houston Hospice for helping me and our family accept what was happening and make his comfort our sole priority. My grief is mitigated by the sure knowledge that we did the right thing: he left this world in peace, as he wanted.

— Erin Blair

20. March 15, 2010
6:55 pm

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So sorry for your loss. I am a long time follower and admirer of your columns. It is evident that the intelligence and insight that you have always provided about how we live is equally evident in this post about how we die. What is particularly striking is how well you have managed to do this even when the grief is fresh. Thank you.

— cm

21. March 15, 2010
6:57 pm

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I am so terribly sorry for your loss. Thank you for sharing your story with us and for showing your love for Richard by putting him first and letting him go. I am keeping you and your family in my thoughts and prayers.

— Nancy in NYC

22. March 15, 2010
7:01 pm

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My sincerest condolences to you and your family on the death of your husband, father, and grandfather. May his memory be a blessing. We thank you for what seems so Jane, that you have shared yourself with us all once again.

— Devera Witkin

23. March 15, 2010
7:03 pm

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PEACE

— a friend

24. March 15, 2010
7:08 pm

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I admire your bravery.

— Vickie

25. March 15, 2010
7:13 pm

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I am so sorry to hear of your husband’s death. Even when you know death is coming, nothing can prepare you for the grief. You are in our hearts and thoughts during this sad and difficult time.

— Maria C.

Comment

Once my Mom was gone from the lung cancer I had mixed feelings: Sad to lose her, and glad that was no longer suffering.

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