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The Great Beyond: Jane Brody on End of Life Issues

The Great Beyond: Jane Brody on End of Life Issues

Picture of Barbara Feder Ostrov

It sometimes seems like it takes a high-profile case like Terri Schiavo to get people to think about end-of-life issues – or editors to agree to stories on the topic.

On Friday, Jane Brody, noted New York Times health columnist and author of "Jane Brody's Guide to the Great Beyond" participated in a question and answer session with me that elicited a lively and substantive discussion with The California Endowment Health Journalism Fellows. Here's an edited transcript of our conversation.  

BFO: Why did you feel a need to write this book?

JB: I've been writing health for 45 years. It became increasingly apparent that we have a health care system, such as it is, that only talks about prolonging life and never ever comes to grips with the whole issue that life in on a continuum.  There is no cure for mortality. We have really denied the fact that eventually all of us, one way or another, are going to come to an end.

BFO: How did you find the families in your book?

JB: Every family has somebody who died. The very week that I started researching (the book), somebody I knew was in hospice dying of a blood-related cancer. She agreed to be interviewed in hospice, and she was fabulous. I knew she had coped with this disease for 2 ½ years. How had she coped? She chronicled her whole experience through cancer, what her life meant and life meant to her. It was extraordinarily informative. She said to me that the experience of e-mailing 200 people or so over two years was more therapeutic than chemotherapy.  There are always people there. Just ask them.

BFO: How did you get people to open up to you in the way you did?

JB: I don't know that there were any special tricks. I'd say, I'm here to help people deal better with these situations, and perhaps you can tell me your story. Grieving is a very challenging situation for a lot of people. They clam up and don't know how to talk about it.  It's a question of asking people forthrightly and saying, I'm here to help people deal with situations that most of society doesn't effectively deal with.

BFO: Why is it easier to publicly discuss diseases like breast cancer but still so hard for us to actually talk about dying?

JB: In 1958, when my mother was dying of cancer, we did not talk about cancer or death. We've come some way in our willingness to talk about the diseases that kill us.  Elizabeth Kubler Ross opened the dialogue about death and dying, but didn't really change the scenario.  Don't believe what you may have read. These five stages of dying and grieving that she outlined rarely happen. People often get stuck in one stage. Many people never come to this glorious realm of acceptance. I say in my book, it's really important to be on the same page as people who are dying. Let people die the way they want to die. If they want to die in denial, fine.

BFO: One of the things that surprised me was your advice to refrain from calling 911 when someone is in the process of dying. You can't call 911, because the people who respond are honor-bound to resuscitate them.  Talk a little bit about the 911 issue.

JB: There is a document that your physician has to complete and sign that authorizes paramedics to do nothing, if that's what you want to do. Most people don't have this form. They've never heard of it.  I describe in the book what the act of dying is all about and how to recognize it.  When that final breath is taken and the heart stops and you know that this person does not want to be resuscitated, you wait 20 minutes until you call 911, because after 20 minutes that person cannot be resuscitated.

BFO: Who has a harder time talking about dying: the young, the middle-aged or the elderly?

JB: People who are young may not have as much difficulty as people who are closer to it.  Older people have seen so many people die that they're not as scared. The middle-aged, the sandwich generation, probably are in the greatest denial. They certainly do have to confront it.  Many I've met have told me that they're trying to address these issues with their parents. But when it comes to their own mortality, that's when they're in denial.

BFO:  Talk a little bit about the actual dying process and what surprises people about it.

JB:   If somebody is approaching death and getting increasingly weak, you can't use foods. Stuffing food into someone in this situation makes things worse.  They get gas problems, they vomit, they're in pain. Another thing that people don't understand is that when a person has trouble breathing, you don't stuff an oxygen mask over their faces. A much better plan is simply to open the window and let air circulate.  Morphine, which people resist like crazy [because of fear of addiction] is an absolutely superb drug that makes the dying process much more peaceful. That's what you want to remember – that person dying peacefully.

BFO: Can you talk about the health reform controversy surrounding the now-debunked "death panels?"

JB: Sarah Palin didn't invent that phrase, but she ran with it and made it a national talking point. I was apoplectic when I heard about this.  The provision in the House bill simply was going to reimburse physicians for talking about end of life decisions with families.  These discussions take time. You sometimes have to come back to it.  Physicians as professionals have a right to be paid for their time.  All it did was to divert attention from the real issues in the health reform debate.  It scared people unnecessarily.  No on wants to pull the plug on Grandma.  I'm a grandma, and no one is going to pull the plug on me unless I want them to.

BFO: What does the controversy say about our ability as a society to talk about these issues?

JB: It says we have our heads in the sand.  $50 billion of Medicare money is spent on the last two months of life. Of that $50 billion, 20 to 30 percent is spent on totally futile care, unnecessary care that makes people sicker.  This situation is untenable. We can't continue this way.  We could rescue Medicare by simply eliminating futile treatment at the end of life. It doesn't do people any good. It's up to physicians to say, this is not helping. There is no magic bullet out there. There is no cure for mortality.  If Methuselah were walking around, we would have such a huge population we wouldn't know what to do about it.

BFO: In the ‘90s, some hospitals were moving so aggressively to argue against futile care that there was a big uproar. What happened to that effort?

JB: What we have in its place is hospice. Hospice care is really the answer to eliminating futile treatments. People misunderstand what hospice care is all about. They think it's giving up. Well, it's giving up when treatment would be futile.

Art Buchwald was diagnosed with kidney disease. His kidneys had shut down. His doctor said he would have to   go on dialysis. He said, That's not how I want to live. So he went into hospice. And five months later he was still alive, and his kidneys were doing better, so he checked himself out of hospice. And he wrote a book.  People who go into hospice live longer, and they live better. And they die much more comfortably, and their families have a better experience with it.

I just had a column about home hospice.  The Visiting Nurse Service performs home hospice. Each patient has a team. These people are available 24/7, as long as there's somebody at home who can take care of the patient.  Most people say they want to die at home.  Seventy percent of people don't die at home. They die in the hospital or a nursing home. I asked if I could shadow visiting home hospice workers.  I visited four different patients in one day.  It was fascinating.  I think it informs the debate more than anything else to tell these personal stories. It's not difficult to do. People are willing to speak up.

BFO: A statistic in your book said that about half of hospice in this country is for-profit. I was very surprised by that. Have you done any reporting or thinking about any differences between for-profit and nonprofit hospice?

JB: I have not explored that.  It's certainly worthy of exploration. We certainly know that there are differences in for-profit and nonprofit hospitals and insurers.  The hospice that I observed that was paid for by Medicare and Medicaid was fabulous.  It couldn't have been any better.

BFO: What does it take to keep end of life issues on the front burner?  Does it take another Terry Schiavo?

JB: Terry Schiavo was 26 years old when her brain was deprived of oxygen for so long that she was cognitively dead. She was the equivalent of a worm.  Instead of having expressed her wishes as she would want to be treated, her family, her husband and her parents, were locked in a 15-year battle over pulling the plug.  Tube feeding kept her going as a vegetable for 15 years.  It is never too soon to create these documents. It is not enough to have a living will.  Everybody needs a health care proxy, a human being who can speak for you when you can't speak for yourself. That human being has to have a conversation with you about what you want.  All of the issues in the living will have to be discussed with your healthcare agent.

You can't write about these issues too often, because everybody faces them.  It is a basic human life issue. You don't have to wait for some national case to spur this reporting.  It's out there every single day, and all you have to do is scratch this surface and write about them. People identify with stories about people.  The more you can write about people, the person who goes through the hospice experience and has a very peaceful death, the better. Interview the family and talk about what it meant to them, how when the person died, the hospice took care of everything.

BFO: What is a good death, in your mind?

JB: I probably will go out kicking or screaming. There is no such thing as a good death that you can define for everybody. Each person has to define for himself what is a good death.  The critical issue is that you not be in agony.  It is not good to die with unresolved issues plaguing you, for example, discord with family.

BFO: Are there under-covered issues that you'd like reporters to explore a little more?

JB: Writing about legacies, the kinds of legacies that people can leave behind that are meaningful, that they can be remembered by. Passing along words of wisdom, things you have learned from life. 

My mother died when I was 16 years old. At the age of 18, I wrote an essay, "When you come to the end of your days, can you write your own epitaph?"  What I learned from my mother's death was to live every day as though it was your last.  Don't waste your life waiting for this magic day when you can do something.  Even though my mother couldn't give me her life lessons, I learned that from her death when I was that young.  My mother-in-law died at 84.  After she was widowed, she came out of her depression and decided to write the history of her community, which happened to be the first Swedish settlement in Minnesota. She interviewed all these old folks in her community about what it was like when they came over on the boat. She combed through their attics, and produced this book, which remains a popular item in her community two decades after she died. Her daughter has been doing a similar thing, writing about what it was like to grow up in Minnesota without running water and electricity.  Her essays are so informative. This is what she's going to leave behind for generations to come.

I want to add one more issue that doesn't get enough coverage.  Autopsies are a dying breed in this country. I have a chapter on autopsies and the value of autopsies. We learn a lot about what happens in the human body as a result of autopsies.  We also learn information that is helpful to families.  It's important to the survivors to know what it is that happened, because it can influence your health. You'd be better off spending the money on an autopsy than a funeral.  Supporting life in the wake of death is a valuable thing to do.

BFO: How do you deal with editors' lack of interest in these topics?

JB: Every single column I have written about these issues has drawn an enormous public response. Your editor probably has the same fear of death of everyone else in society. But people are very interested in this.


Picture of Bailey Barash

Hello -
I am a documentary maker and hospice volunteer in Atlanta, Georgia.
I've produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.
It's called 203 Days.
You can view it in its entirety at the following University of Connecticut website along with a study guide.
or on this website:
It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.
203 Days won the First Place 2007 Film Award from the National Hospice and Palliative Care Organization (NHPCO).
If you'd like more information please go to my website
I hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.
Bailey Barash
Picture of Barbara Feder Ostrov

Thank you and welcome to ReportingonHealth!


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