Film Series: Watching Big Fish Next to My Mother in the Hospital

Now, this is an interesting coincidence, as I was watching “Big Fish” on Amazon Video whilst visiting my mother during her last week in this world.  I was summoned to Portland by my physician brother who told me that my mother was dying.  She had been ill and we expected her to pass a year ago, but she rallied and was discharged from hospice.  But now, she was having another heart attack and we had decided that with her progressive dementia and renal failure, she would not undergo dialysis.  We had this discussion with her before the first heart attack and she had agreed with the plan.  She was lucid enough to understand the consequences of this decision.  As she became progressively more demented, we confirmed with another discussion.  She felt that her life was complete and she was ready to go.  My father had passed away 6 years ago, and most of their friends had died.  She had suffered increasing dementia, complete deafness and renal failure.  She was struggling to maintain her dignity with loss of control of her life and basic bodily functions.  The heart failure was going to be the last straw.

I watched the movie whilst she was sleeping and was actually surprised that there was not much discussion about this kind of stuff in this movie. This is a story about a young man who is coming to terms with the tales that his father told him when he was young.  The son thought that the stories were just that, stories, and he did not respect his father  as he perceived them as lies.  Towards the end of the movie, he finally comes to terms with his father’s identity through these stories, which were at least partially true and perhaps a little exaggerated.  His father then dies and becomes the “Big Fish” that haunts the waters of the local river.  Was it symbolic that the fish got away?

So was this intentional, leaving out the elephant in the room.  It was implied through the whole movie that the father was dying.  He did not talk about his feelings, his love, legacy and his wishes for the living.  They certainly did not talk about invasive therapy and life support.  Maybe, if they did, no one will watch the movie.  At any rate, it seems like such a different death than the one I was witnessing.  We discussed all these things as a family with my mother.  She also had lived an amazing life, surviving the Japanese occupation in China, the communist takeover, decades in the Middle East and watching her children vanish into the West, another “Big Fish” story, but this one did not get away.


* Written by Jane Lombard, MD, MBA a board member with the Center for Practical Bioethics. 

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Bioethics Film Series

From reproduction to end of life, bioethical issues affect all of us. What better and more fun way to think about them than film? 

The Center for Practical Bioethics is thrilled to partner with the Tivoli Cinema in Kansas City to present the Bioethics Film Series featuring three iconic films. 

Following screenings at 7:00 pm, Center staff will lead discussion of each film’s major themes. Tickets may be purchased from the Tivoli in advance or at the door (Adults $9, Students $7)


Big Fish
Thursday, October 11, 2018
7:00pm


Tivoli Cinemas 

4050 Pennsylvania 

Kansas City, MO 64111

End of Life Care in the News

The State of Aging and End of Life

Health Talk

KMBZ Radio

November 21, 2009

53 minutes 51 seconds

The task of making our medical wishes known during a serious illness or at the end of life is much more complicated now that it’s part of a political debate. John Carney, Vice President of Aging and End of Life at the Center for Practical Bioethics, explains in this edition of Health Talk on KMBZ Radio, Kansas City.

The Cost of Dying
60 Minutes
CBS News
November 22, 2009

Last year, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients' lives. And it has been estimated that 20 to 30 percent of these medical expenditures may have had no meaningful impact.

You might think this would be an obvious thing for Congress and the president to address as they try to reform health care. But what used to be a bipartisan issue has become a politically explosive one.

The Chaplain's Role in Advance Directives

A good chaplain friend from Nebraska has sought our help and I intend to provide some from my perspective.

He asked in part, “Is it right to initiate an end of life planning discussion with a person whether or not the person has indicated a desire to talk of such matters?”

Now, I’ve never been a chaplain, nor have I been lying as a patient in a hospital bed in recent history. But my admiration for what it means to be a chaplain in a healthcare institution leads me to opine that chaplains could ask almost anything and I would treat the question respectfully—maybe not answer it, but I would presume his/her right to ask it.

So let’s talk specifically about advance directives. In the admissions process, the patient has been asked if he/she has one. Whether the answer is yes or no, the chaplain not only has the privilege but the obligation to follow up on the patient’s answer.

Patients from 18-88 (and beyond) need to have this discussion, and who better than an unhurried chaplain. So I argue that beneficience obliges the chaplain to open the discussion, thus contributing to the patient’s welfare.

Comments?

Clarifying Texas Advance Directives Statute

Kendra J. Belfi, MD, CMD, FACP
Private practice of internal medicine and geriatrics
Fort Worth, Texas

May 8, 2009

Elizabeth Graham of Texas Right to Life was quoted recently in a story about the Texas Advance Directive Statute. (http://www.onenewsnow.com/Legal/Default.aspx?id=489630).

I was particularly concerned about what she said about doctors writing unilateral DNR orders without consulting patients.

In my experience as an ethics consultant at a hospital in Fort Worth-the main problem is that doctors write unilateral full code orders on everyone without asking patient or family their wishes.

In our institution, in order for the doctor to write a DNR order without patient input the patient needs to be unable to express his wishes and there needs to be no available surrogate--AND there must be two physicians signing, one whom must be a member of the ethics committee.

I also think Ms. Graham’s statement about euthanasia is very misleading.

There is neither physician assisted suicide nor euthanasia legalized in the state of Texas. Before the dispute resolution process is even invoked, there has generally been a long hospitalization, multiple attempts to resolve things outside the process and then a series of meetings before the 10 day clock even begins to run.

The San Diego Bioethics consortium has recently drafted a model hospital policy on non-beneficial treatment and conflict resolutions which I believe has some very good definitions. They point out that parties may disagree on the best course of action in the care of a patient. Steps must be taken to resolve the dispute if the treatment team believes that 1) continuing treatment is non-beneficial or 2) The burden of suffering and intrusiveness of treatment significantly outweighs any potential benefit or 3) treatment is contrary to generally accepted medical standards but the patient or surrogate continue to request the disputed treatment.

I wholeheartedly agree with their statement that "A health care provider or institution is not obligated to comply with health care instruction(s) or decisions(s) that requires non-beneficial treatment or treatment contrary to generally accepted health care standards. "

This is a long-standing ethical principle in American medicine and I believe that physicians need to be courageous enough to stand up to families that are requesting treatment that is neither appropriate nor medically beneficial to patients.

The political compromise that was reached when the Texas Advance Directive act was passed was that patients had a virtually total right to refuse treatment but did not have a corresponding right to demand inappropriate treatment. The example I use for lay audiences is that you cannot demand a liver transplant if you do not meet the criteria for liver transplantation.

People seem to understand that scenario--but often do not understand that there are many other scenarios in which patients/surrogates are demanding inappropriate care.

Congratulations! You've had The Talk

On April 16, tens of thousands of people across the Kansas City metro area wore buttons, filled out healthcare powers of attorney, and most importantly – they had “The TALK.” More than 100 organizations held events – in libraries, hospitals, schools, places of worship, and homes.

THANK YOU to all for helping make Kansas City Healthcare Decisions Day a rousing success! We will see you in 2010. And let’s keep talking!

Links:

Making Your Wishes Known for End of Life Care

Participating Organizations

Advance Directives, Living Wills, and End-of-Life Issues, KCUR Radio with Bill Colby and Dr. Karin Porter-Williamson

'The Talk' needed as we learn how, when to die, Bill Colby, Kansas City Star, April 13, 2009

Having "The Talk" April 16

Kathy Sproules, MD, Crossroads Hospice

John Carney, Center for Practical Bioethics

34 minutes

Have You Had "The TALK?"

April 16 is Healthcare Decisions Day across the country - a day to name someone you trust to speak for you during a serious illness or at the end of life.

This special edition of the Bioethics Channel comes courtesy of KMBZ Radio in Kansas City. It’s a radio program that aired April 4, 2009. Guests include Kathy Sproules, MD of Crossroads Hospice and John Carney of the Center for Practical Bioethics.

The Bioethics Channel is a free podcast. To subscribe via iTunes, click here.

Discerning, Deliberating and Deciding

Rosemary Flanigan
April 9, 2009

On April 7 we had over 70 ethics committee members at our training workshop and it was an excellent morning. I thought Terry Rosell did an exceptionally good job (along with John Lantos, Myra, and Bill Colby, of course) leading the discussion of a case at our 8-person tables.

I shall tell you about the case next week, but what Terry made us do is to consciously move together through Discerning (what’s going on? what are the facts?) to Deliberating (what responses are possible?) which in turn led us to Deciding (what are we going to do? and, most interestingly, why have we decided on this?) and finally to Doing (what? when? how?)

It moved the discussion along, towards a goal, within a time frame, and led us to resolution with an ethical basis.

I know, I know, that’s what you do at every ethics committee case consult. But for some reason, I found it refreshing to move together from facts (people love to sit on this step and they can question facts all day!) to possibles to a decision with a reason—and finally, to a plan of action.

Within our reflection on authenticity, I am glad Brian reminded us of Rebecca Dresser’s “Another Voice” at the start of the issue: if respect for a person’s authenticity is the ground of our respect for that person’s advance directive, might we not have good reasons sometimes to override specific requests stated in the AD??

Why? Because they don’t jibe with who the person really is.

Hmmmmmmmm.

Have you had "The Talk"?

Rosemary Flanigan

March 12

We had our Ethics Committee Consortium on March 5 and among the discussion it was announced that National Healthcare Decisions Day is going to be celebrated April 16 here in KC.

Funding is scarce and so all the groups in the Consortium were urged to do what was successfully done last year. It is important to keep the momentum going.

I hope we shall continue to push people to talk with loved ones about end-of-life. I went to a funeral this week-end; again, it was a fall, a brain aneurysm, and decision time to withdraw life-sustaining treatment. Wishes had been expressed; desires made known—sad but simple.

So let us do whatever we can do for National Healthcare Decisions Day, each in our own part of the woods.

Link: Have “The Talk” -- Kansas City Healthcare Decisions Day

Georgia Case: When is assisted suicide murder?

A case in Georgia involves a group called “The Final Exit,” which on its website purports to:

**Serve people who are suffering intolerably from an irreversible condition which has become more than they can bear.

**Foster research to find new peaceful and reliable ways to self-deliver.

**Promote the use of advance directives.

**Advocate for individuals when their advance directives are not being honored.

Law enforcement in Georgia has arrested four individuals associated with the group in connection with the death of a 58 year old man.

Lots of points of view in a case like this, including that of the Center’s Bill Colby in the blurb below. What do you think?

Assisted suicide case in Georgia revives right-to-die debate
Greg Bluestein
Associated Press
February 27, 2009

Some legal experts said they hope details of the network's work would help stoke a deeper discussion over assisted suicide. William Colby, an attorney who is a fellow with the Center for Practical Bioethics, said prosecuting the group wouldn't support that goal.

"People are trying to understand how we navigate the end of our lives, and we need to keep talking about it," said Colby. "But trying to round up people in groups on either extreme end of our social spectrum is not necessarily the best way to move public dialogue."

Danger: Mandating End of Life Discussions

John Lantos, MD
John B. Francis Chair in Bioethics
Center for Practical Bioethics

July 16, 2008

The California legislature is trying to mandate certain conversations between doctors and patients. Such an approach to medical practice is dangerous.

Doctors ought to talk to patients about many things. Patients ought to know about the importance of good nutrition, weight control, and smoking cessation. They should know the risks and benefits of every treatment that their doctor recommends and of alternative treatments. They should know their prognosis.

Such discussions require time. Patients must be helped to understand complicated treatment algorithms and complex probabilities. Discussions of end-of-life care can be emotionally complex. The process of initiating and structuring such discussions is the art of medicine.

Some doctors are better at it than others. Medical educators try to improve doctors’ skills at such conversations, with only limited success. It is unlikely that legislative mandates for such discussions will succeed where education has failed.

Attempts to legislate specific conversations will quickly run into legal, moral and semiotic problems. If the legislature can mandate certain discussions, can they forbid others? What sort of policing mechanisms would be necessary to nab violators? Will California cops be carefully monitoring every clinic to insure compliance?

Doctors may not always get things right. Legislators would be even worse.

What do you think? Share and view your thoughts by clicking on "comments" below.

Links:

California bill would mandate discussions of end-of-life options, American Medical News, July 14

Making Your Wishes Known for End-of-Life Care

California State Assembly Bill 2747 on end-of-life care

Religion, Conscience, and Controversial Clinical Practices, abstract, New England Journal of Medicine, Feb. 8, 2007 (Note: co-authored by John Lantos, MD, John B. Francis Chair in Bioethics, Center for Practical Bioethics)

Medical Futility Blog, Thaddeus Pope, July 7