September 2, 2014

Family Centered Care & Chronically Ill kids

In the January 20, 2014 edition of The New Yorker, Dr. Jerome Groopman writes about how we might best care for chronically ill children. He looks at teams of specialists that are trying to address chronically ill kids needs from more than one perspective. This is an issue close to my heart and involves a conversation that I’ve been privileged to be part of at Seattle Children’s Hospital.

I will not summarize this article, it is best to read it, but I will point out a couple of important statements and why they need to be taken to heart by other pediatric care providers and hospitals.

Christina Ulrich, an attending physician at Boston Children’s and Dana Farber says about treating pain; “…I learned you can’t treat a child’s pain effectively without understanding her anxiety and her social situation. It’s not just a matter of writing a prescription.”  This is profound.  She is talking about trying to understand a child IN CONTEXT, within herself, her family and her cultural background. We all suffer, but HOW we suffer and how we think about that suffering or that pain, can lead us to be treated in various ways.  For example, when a child is afraid of needles and needs an infusion, there are a number of ways to approach that. There are numbing creams and sprays to help alleviate the actual sting of the needle, there are Child Life experts who can talk the child (and help the family) through the actual needle insertion. They might also need to learn if that child NEEDS to watch the needle insertion in order to feel some control or whether distracting them and helping them focus on their breathing is better for their anxiety.

That is an example of a mild, but potentially frightening pain moment compared to a cancer patient’s treatment needs. In the latter case there might be others on the team that would help the child and the parents decide the best course of action for both pain and treatments.  Here is where my second concern comes into play; the family centered approach to decision making.

Janet Duncan, a nurse practitioner said, “we bring a little bit of a different perspective, because we sit with families, who teach us about how they make decisions. It’s not that there is a right or wrong; it’s really what is the best decision for your family, for your child.”  I don’t think I could say this any better. Doctors have medical knowledge but the family knows their child and the child herself might be old enough to express an opinion or need. All of this is important.

This is exactly what the Family Advisory Committee at Seattle Children’s Hospital spends time thinking and talking about to various providers and committees throughout the hospital. All of us are parents and we have had either good experiences of family centered care or bad ones.  Likely, both, and we don’t want to repeat the bad ones ever again.  More and more children’s hospitals are trying to move to a family centered model but it is still rare to have teams of specialists from various fields consulting on one case. Though potentially more expensive and time consuming initially, it may lead to better outcomes and reduced expenses as families adhere better to treatment regimens and their children feel better cared for.

 

The Moth Eaten World

 

The Moth Eaten World-coverHere is the cover of my new chapbook put out by Finishing Line Press.  You can order a copy here

 

To entice you, here are some “glowing” words from two poets who have read the book.

Suzanne Edison’s The Moth Eaten World held me breathless. Poem by poem we explore not just a failing body, but a daughter’s disease and a mother’s journey through this world.  The poems fill us with questioning concern—I left God in her Temple when you got sick—but she compassionately walks the reader through. Not many poets can write about illness well, especially the illness of their own child, with such precision and grace that Edison has.  These poems offer so much to the reader—strength and struggle, beauty and fear, faith and doubt—Edison is not only the detailed observer, but the moth, the mother, and the world held together, she writes a powerful and necessary book for all.    

– Kelli Russell Agodon, Author of Hourglass Museum & The Daily Poet

In The Moth Eaten World, Suzanne Edison talks about a subject no one wants to talk about: the sick child, and accomplishes this onerous but fundamental task by invoking mythologies, African tradition, story telling and the use of fresh metaphors to guide us through a deep and challenging world. She describes the accouterment of illness with a cleverness that invokes sticks in the sand instead of IV poles, angels instead of nurses, always in the presence of a mother’s partially cloaked desperation, and her fervent desire to “stitch you back whole” once again. All in all the book is a clear view of a catastrophic situation made palatable by the skill of the writer and a vision that uses language as warrior against the sorrow of loss. 

 

–David Watts, author of Bedside Manners, and The Orange Wire Problem.

The Art of Losing

I highly recommend a book of poetry edited by Kevin Young called The Art of Losing: Poems of Grief and Healing.
The title is from Elizabeth Bishop’s poem One Art. I got a hardback version at a book closeouts website through Amazon (forgive me independent bookstore lovers) for about $8 + shipping.

I want to quote Kevin’s opening lines in his introduction as a way to bring you into wanting to also get the book.
“I have begun to believe in, and even preach, a poetry of necessity. This is a recognition not just of the necessity of poetry to our lives, but also the fact that necessity is what drives most of the poetry that matters, or the way that it matters.” And, “a poem must be willing to be unwilled, beckoned by need.”

And this book is filled with poems driven by need: elegies, remembrances, dedications, words that attempt to point towards the things that are often unspeakable, or seemingly feel that way.  I love the way I am drawn to think about other forms of art, painting and music, as I read different poems. I thought about Ad Reinhart and his seemingly monochromatic paintings in all black and all red. They beg us to be absorbed into them, by them. They seem to hover around those “almost unspeakable realities” and yet, we keep trying to find the words and images, sounds and visuals to express our ineffable lives.

The Art of Losing is a remarkable compilation of poets living and dead, from W.H. Auden, Emily Dickinson, Anne Sexton to Dean Young, Robert Hass, Lucille Clifton, Adam Zagajewski, just to name a few. And there are so many, many more.  For what greater mysteries are there than death, love and living.

As William Faulkner is quoted in the opening section called Reckoning:

Between grief and nothing, I will take grief.

Theodore Roethke says in the section, Recovery:

I learn by going where I have to go.

And finally, Philip Larkin opens the last section, Redemption with:

What will survive of us is love.

Brain Review

After reading a blog post of mine, I was recently contacted by a woman, Allison Morris, who has made a simple graphic  (at onlinecollegecourses) of the brain to help people understand the supposed functions of each area.  While I applaud this lively experience I am reminded by Joseph LeDoux, in The Synaptic Self, that the brain doesn’t only have discreet areas of operation, it is in the synapses that information is recorded and stored and then transferred to other areas of the brain and to the genes themselves.  Here is a statement by him:

Synapses are the spaces between brain cells. But more importantly, they are the channels of communication between cells that make possible all brain functions, including perception, memory, emotion and thinking.

It’s practically a truism to say the synapses underlie personality since synapses underlie everything the brain does. More important yet: synapses are the sites of storage of information, including information that is encoded by our genes and also by our experiences — our memories.

When it comes to personality, genes and experience are just two ways of doing the same thing — wiring synapses. That’s why I say, To the extent that we are a product of our genes and experiences, we are our synapses.

This doesn’t mean that the essence of who you are is encoded at a particular synapse. It means that your self is a very complex pattern of synaptic connectivity in your brain.

In thinking about how emotion, writing and the brain come together, this man has pushed my understanding along quite a ways.  If this area interests you, I highly recommend his other book, The Emotional Brain too.

Obamacare is really Care for All

I can’t begin to describe my shock and delight when I came down to breakfast yesterday and my husband had the radio tuned to a discussion about the Supreme Court’s ruling on the Affordable Care Act. It was 8 am our time and the ruling had just been revealed.

Yes, we have a child with a rare, autoimmune disease for which there is no cure, Juvenile Myositis (JM). Thankfully, she is in remission after 5 years on medicines for which, another yes, we were covered by my husband’s health insurance. ( Though it has become more expensive and covers less, we are some of the lucky few.)  But that doesn’t mean I rest easy at night. Because there is not a cure for her illness, we live with the fact that it could reoccur at any time. It is a big unknown, a potential time bomb.

As if I needed another reminder of the potential harm of JM, a 10 year old boy lost his battle with it just this week.

A good friend whose daughter shares this disease put it this way, “To me, the health care law means – at least – the POSSIBILITY that throughout her life, her decisions about schooling, employment, and moving between states may be based on her dreams and desires – not on what might allow her to maintain decent health coverage. She deserves these basic freedoms as much as any chronic-illness-free kid.”

While this law will continue to be a hot-button political issue, I think Dr. Atul Gawande has given a thoughful  analysis of the reasons the Affordable Care Act (ACA) is needed, why social policy changes such as this are such contentious issues from a historical perspective, and the moral reasons for it’s necessity.

I know politicians will use this law to try and gain power and drive wedges between us, but as Dr. Gawande points out, what we have in common, “We are all born frail and mortal—and, over the course of our lives, we all need health care”, should unite us.

 

 

 

 

The Healing Art of Writing

Cover Image

A new anthology, The Healing Art of Writing, was published recently by the University of California Press, Medical Humanities division.  It contains essays, poems and creative non-fiction written by attendees at the Healing Art of Writing conference and workshop held in California in the summer of 2010. (Information on the 2012 workshop is not yet public but will be held July 8- July 14, at Dominican University of California).

I recommend this, not just because I have two poems in it, but because the breadth and depth of the writing is sure to reach a great many people.  I believe we need to keep articulating the feelings and thoughts we have about illness, healing, mortality, medicine, all the experiences we were never educated to express in order to expand our notions about what it is to be human in the 21st century, and beyond.  I’ll be reviewing specific pieces from this book in another blog.

 

How To Be Sick

How To Be Sick– by Toni Bernhard

A Buddhist-Inspired Guide for The Chronically Ill and Their Caregivers

This book was brought to my attention by another Juvenile Myositis (JM) mom. When I was in the throws of upset, fear and pain during the first year after my child’s diagnosis with JM I read a book by Pema Chodron called, When Things Fall Apart. She is a Buddhist monk and I found this book calming and helpful. It wasn’t helpful in the same way as How To Be Sick is, though. Chodron’s book is a philosophical work and though I am not a Buddhist I could take some of her words and apply them to my decidedly, non-religious, but spiritural life. I had to make up my own mantras or helping words when I was feeling frightened or worried and it would have been wonderful if I had had a bit more guidance in this realm.

Ms. Bernhard’s book, How To Be Sick, published in 2010, is just such a book. It is philosophically based on her Buddhist practice, which she began prior to her illness, and she has used her experiences with a life-changing chronic illness to fashion a clear and practical approach to inner healing and coping with chronic illness.

Most of the book is geared towards the ill person and self-care. She gives us enough of her personal experience to connect with her and to understand how her Buddhist framework helps her deal with daily, as well as spiritual, needs. And though she is an adult, writing about her challenges as a chronically ill person, I found much in her experiences of suffering and approach to disturbing thoughts and feelings, that was helpful to me as a parent of an ill child.

There are a few sections in the book where she acknowledges that her illness also affects her husband/caregiver and her relationships with her children/grandchildren. It also restricts her access to an active social life. While my experience as a parent is similar, in that having an ill child changes everything in one’s life, there are a great many differences. A parent needs to help her child cope with their feelings, be an advocate for their child, be their first line of defense in the world, and at the same time, cope with ones own feelings of loss, grief, fear, anger and hope. In addition, there is often a partner or husband and other children in the family who need attention, and all those relationships change.

There is not a lot of specific guidance addressed to the caregiver here but many of the focal realms, such as, Facing The Ups and Downs of Chronic Illness with Equanimity, Accepting Pain, Healing the Mind by Living in the Present Moment, all speak to the ruts and paths our journeys as parents of chronically ill children take, and are useful to consider. And in those chapters and throughout this book, I found many instances where I said, “yes, that is how I feel too”, or “I can try saying that phrase when I am feeling dispirited or helpless.”

Sprinkled throughout the book are many quotes by Buddhists, poets and healers of one lineage or another. In the chapter, Using Compassion to Alleviate Your Suffering, I found this quote by Stephen Levine from A Year To Live.

When the heart at last acknowledges how much pain there is in the mind, it turns like a mother toward a frightened child.

As a parent of a child with a chronic illness, I too must parent the child in myself. I must make time to nurture and draw from my inner well. Then I can go back into the world and continue to care for others with more compassion and strength.