living with cancer

Living with a life-threatening illness was the class discussion from this semester that resonated most with me.  I found Talia’s story to be compelling and indicative of successful coping in the face of a life-threatening illness.

Talia Joy Castellano was diagnosed with neuroblastoma at age 7.  She became an internet sensation at 12 years old with well over 1 million subscribers to her YouTube channel.  She was a self-taught and accomplished make-up artist  who posted how-to videos to help herself feel beautiful after losing her hair due to cancer treatments.  Her bubbly personality and unique way of coping with her illness inspired countless people all over the world.   Talia shared her story on The Ellen Show and she was made an honorary Cover Girl.  Talia became a voice for children with cancer and an example for everyone of how to live life to the fullest.

Talia developed a second cancer, leukemia, in August 2012.  At almost 13 years old, Talia was well aware of her condition and prognosis.  She made the decision to forgo a bone marrow transplant and chose to live what time she had left to the fullest.  That seems like an amazing decision for someone so young, yet Talia was wise beyond her years.  It seems easier to accept that an older person would chose quality over quantity of life, yet when a young person does this, it can be perceived as a tragedy. Many of Talia’s fans didn’t seem to understand or accept her decision.

“Basically there aren’t a lot options for treatment anymore.  The docs gave me to option of doing treatment or don’t do the treatment and just live life for the time remaining.  Having cancer has been an amazing yet horrible journey,  yet every journey has an end.”

 

 

Below is her video explaining about her latest diagnosis and why she felt a bone marrow transplant was not the right treatment for her.

“I’m going to decide on whether or not I want to do the bone marrow transplant, or whether or not I just don’t do it and the live the time I have remaining,” said Talia.  ”This isn’t fair to me anymore, I’m only 13. I shouldn’t have to be doing this.”

 

Talia went through so much in her short life and yet she chose how she wanted to live the last 11 months of her life.  Sadly, Talia lost her life in July 2013, but clearly her message will not be forgotten.  Follow Talia’s story at her website.  http://angelsfortalia.com/

Dying Well

A good friend of mine heard Dr. Ira Byock interviewed on NPR Sunday morning.  Since she is one of my interview subjects for the paper in this class, she was intrigued by what Dr Byock had to say.  Apparently her participation in this assignment has caused her to think quite a bit about end of life issues. 

This book is just one of several by Dr Byock that sound very interesting and will go on my reading list.

Whose Death is it Anyway?

“End-of-life planning is one of the few actions within the power of individuals who wish to help themselves and their society. Too few Americans are shouldering this responsibility.”

Each of us has a responsibility to think about and discuss our wishes about our own end of life.  If we don’t do this, someone else will have to take over that responsibility if we become incapacitated.  While our main concern may be comfort and maintaining dignity, our family may want to extend our life by any means possible.  If we have discussed and documented our wishes beforehand, it is much more likely those wishes will be honored at the end of our life.

To do this, we must first confront any fears and concerns about our own dying process.  Making a list of what is most important may help organize our thoughts.  Discussing these topics with friends and family ensures that everyone understands what we want or don’t want.  The physician may be consulted about any medical decisions that may have to be made, especially if a terminal diagnosis is already known.  Many people want to ensure their right to refuse treatment is upheld, but others may insist on receiving treatment no matter what the prognosis.

“But public opinion polls consistently show that most Americans, like my mother, worry about too much rather than too little medical intervention.”

Several forms of advance directives are available and should help clarify our wishes.  We can appoint someone we trust to act as proxy for us should we become incapacitated.  These measures can help ease the burden felt by the family.

“Without advance directives, even a loving child may be ignorant of her parent’s wishes.”

It is a difficult task to shoulder the responsibility for end of life decisions for someone else when you don’t really know what the dying person’s wishes are.  You may forever regret the decisions you make for the dying person, and your own grieving process may become complicated because of that.  My parents had living wills in place long before they needed them.  My siblings and I each had a copy of their living wills and had discussed the contents with both of my parents.  We were all in agreement when the time came to make decisions for end of life care, first for my mother and then for my father a few years later.  A very difficult time was made a bit easier due to advance directives and thoughtful communication.

“The worst imaginable horror for my mother was that she might be kept alive by expensive and painful procedures when she no longer had a functioning brain. She was equally horrified by the idea of family fights around her deathbed.”

While my parents belonged to a cohort that accepted medical paternalism, I grew up questioning everything, including physicians.  I did have to advocate for both my parents at the end of their lives and questioning the medical professionals charged with their care was part of that process.  Physicians are obligated to do what is best for the patient, but they should not make decisions for a patient, especially those that require a moral or preference judgment.  The patient’s autonomy should be respected, and the patient’s right to self-determination should be upheld.  Patients have the right to question their physician at any time during the course of their care.

A better way….

“We imagine that we can wait until the doctors tell us that there is nothing more they can do.  But rarely is there nothing more that doctors can do.”

When the battle for life can be won and the cost of the war is not too great, I want medicine to help me win that fight.  Unfortunately, not all battles can be won or even survived.  Understanding the difference between fighting to win and fighting to lose is paramount.  It is here that medicine falls down.  Patients need help to understand when to change tactics rather than fight until the end.  Leaving that decision solely up to the patient, without providing assistance, is much like leaving him/her stranded on the battlefield.

“… Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value — being with family or traveling or enjoying chocolate ice cream.”

Even when patients do advance planning, families are still faced with end of life decisions that are fraught with difficulty.  Just having the paperwork in place is not enough.  Without also having detailed discussions with family members, the patient’s wishes may not be fully understood and, in turn, may not be actualized.  Even family members who know what the patient wants may be swayed by emotions and circumstances they are unprepared for.  As a result, a patient can die in a setting he/she did not agree to or plan for.  When the discussions take place in advance, the burden on the family members is lessened.  Moreover, family members are not left questioning whether their decisions were the right ones — the patient has already decided that.

“… death is uncertain, but the timing isn’t.  So everyone struggles with this uncertainty — with how, and when, to accept that the battle is lost.”

The right person for the job of guiding patients and their family members through this process may not be the doctor.  The doctor should realize the point in time that these discussions actually need to happen.  Unfortunately, this usually happens way too late to truly benefit the patient.  Some kind of palliative care specialist should be added to the patient’s care team much earlier, even just as a consultant.  Having access to information about options before the decision to stop treatment needs to be made is beneficial to the patient.

“Hospice care seemed to extend survival for some patients. … The lesson seems almost Zen: you live longer only when you stop trying to live longer.”

Perhaps what really needs to happen is more education.  Both doctors and the general public need to fully understand hospice’s goals.  I think hospice really does strive to do what most people actually want at the end of their lives.  But people feel that turning to hospice means they are giving up or accepting defeat.  To me, it just means someone is changing tactics — still winning, albeit in a different way.

One True Thing by Anna Quindlen

I read Anna Quindlen’s book One True Thing a very long time ago, shortly after it was first published in 1994.  The reason I picked this book is because I still vividly remember it to this day.  One True Thing is the story of Kate Gulden, diagnosed with advanced ovarian cancer, and her daughter Ellie, who leaves her life in New York to take care of her mother.  Everything Kate experiences in the months leading up to her death is vividly portrayed.  As her physical condition declines, Kate gradually experiences loss after loss – her independence, social life, friends, mobility and finally her dignity.  Each loss tears out a piece of her heart.  Once she can no longer live in a way that she loves, Kate begins to actively die.  There is a poignant scene between Kate and Ellie that occurs when Kate cannot get out of the bathtub and is forced to allow Ellie to help her.  Kate is devastated by the condition of her body and by the fact that Ellie has to see her like that.  Ellie and her father then must face the ethical dilemma of what to do about Kate’s suffering at the end of her life.

I think this book was the first realistic description of the process of dying I had ever read.  I didn’t clearly understand that death can be a slow, agonizing march to the finish.  At that point in my life I had never personally experienced death in that way.  It would be several years before I went through a very similar experience with my mother.  In a way, this book helped me understand some of the physical, mental and emotional struggles a dying person deals with.  It gave me a clear picture of what death really looks like.

I think unrealistic portrayals of death are misleading and potentially harmful.  It is difficult to watch someone you love die.  If you are ill-prepared or misinformed, the experience can be overwhelming.  Death and dying is rarely quick, painless or clean.  The breakdown and failure of the mind and body is a hard thing to witness.

I think the media makes it easy for us to eavesdrop on death.  We can treat death as something that happens to other people.  We can read a news story and not have to really think about our own death or the death of someone close to us.  The ideal life in America is the antithesis of death, so it is not surprising that our society avoids dealing with death whenever possible.

I do think our society is a death-denying culture.  Anna Quindlen touches on that very thing in the book.  Kate’s friends cannot acknowledge her progressive decline because it would mean they had to “acknowledge the disease, and the fears, and the dangers, and the death.”  As Kate gets closer to death, her friends stop coming to visit because they are uncomfortable in her presence.  It is much easier to avoid the dying person rather than to confront our feelings about their death.

I know it is easier to watch the movie (there is one) rather than read the book.  The book is always better, almost without fail.  I encourage you to take the time to read this book.  You won’t soon forget it.

For more information about the book, Anna Quindlen posted a question and answer session about the writing of One True Thing on her website http://annaquindlen.net/one-true-thing/.  Her other books are great, too!

Book Suggestion: Stiff by Mary Roach

I highly recommend the book Stiff by Mary Roach.  It is a fascinating book about cadavers — what happens to the body after death, how cadavers have been used and dealt with throughout history, and much more.  It ties into our discussion today — it is where I learned about the guy that tried to weigh the soul.  I listened to this book several years ago, just because I thought it sounded interesting.  I can honestly say it is laugh out loud funny (Mary Roach is a hoot), and yet the topic is strangely compelling at the same time.  It is not a textbook (it reads so much easier than that), but I think it could be a nice companion to our class experience.

aj