Friday, May 30, 2014

HOW SHOPPING THERAPY HELPED ME GET THROUGH A DIFFICULT TIME



By Victoria Moore

"How we look is important to many of us. But our character and personality are just as important and are part of our attractiveness to other people."-Macmillan Cancer Support (The Pressure On How You Look)

   The other day I had to go to the library, GNC and the drug store. Normally I would've been excited and overjoyed to hit the streets but since this was the first day I was leaving the house after my breast reconstruction procedure on May 23, I was filled with dread. I was still very sore and nervous about seeing the results.  Once I removed most of the bandages to take a quick bath, I wasn't surprised by the sadness that overtook me when I finally saw it. At this point I wondered how I was going to get through the day.

   Finally, after bathing and asking my mother to help dress and bandage my reconstruction area, I looked at my freshly made-up face and mentally prepared to dress. Due to my soreness and fatigue, I didn't have the strength to style my hair, so I decided to copy an Audrey Hepburn look I love, with a red,white and blue vintage cotton bucket hat and green, black and rhinestone shades. They perfectly set off the navy-blue sailor top and wide-legged green pants I'd chosen. This top is one of my favorites, whenever I have to conceal unsightly bandages, drains or new scars, and this time I wore it over an off-white Laura Ashley t-shirt with a new gold logo Betsey (Betsey Johnson) necklace I'd just bought at Ross.

   While I was running my errands, I thought about the outfit I'd coordinated to wear for my appointment with my counselor at the Department of Rehabilitation the next day, which consisted of my black vintage Don Loper blazer over my blue and white striped Ralph Lauren button-down shirt and a pair of brown Ann Taylor Loft cropped pants. The pants are a little big on me so I usually wear them with a pair of black suspenders I bought at The Surplus Store on Venice Blvd.  By adding a brown multicolored floral tie, black and white bow print ankle socks and brown two-tone bucks, I thought the outfit had a masculine flair that needed a feminine touch so I hoped to find something to lighten it up.

   After getting my vitamins I went over to Style Xpress to see if they had anything that would work. I found a beige and brown Chanel-type knock-off bracelet for $1.95 and brown woven hairband for $1.95, which I ended up wearing over my black velour headband for when I planned to put my hair in an 'up do' on the morning of my appointment.

   Stressful, but illuminating, the meeting with my counselor and an employment coordinator made me even more aware of how much shopping within "my new normal" was essential to my mental health. It allows me to leave the safety zone I surround myself with at home and visit an environment I can enjoy whether I buy anything or not.  Located about five minutes away, by foot, I took a pleasant walk to my favorite Goodwill Industries Thrift Store.  They were having a 50% off sale on their purses, which made me extremely happy, since I've always loved purses and cringe over the high price tags attached to contemporary "it bags."

   About a week ago, I saw a gorgeous brown fringed and white leather bag by Tod for $2,425 in the June 2014 issue of Marie Claire magazine that would've looked perfect with the outfit I wore to the Department of Rehabilitation. It was way out of my price range, except in my dreams, but it did inspire me to buy a black leather purse for my mother, and a green floral bag, a white multicolored embroidered bag and a miniature floral bag for myself. The total came to less than $30, even when I added a white men's t-shirt for $1.99 to the pile. I don't know if I'll feel as hip carrying these bags as I would with the brown and white Tod's but I'll definitely be delighted over how their bright and sunny designs add a splash of color to whatever I'm wearing with them.

   Prior to my diagnosis with Stage II A Breast Cancer in 2010 I had periods where I didn't care about my appearance as much as I do now and I let others tell me to "dress down".  I'm embarrassed to say I went along so I wouldn't rock the boat, until I had an epiphany, during my last procedure.  I realized I didn't dress to impress others but to go into battle. My clothes have become my uniform, and I'm a soldier who's still fighting a war against prejudice and pain. Despite the progress we've made, as a human race, I still encounter my fair share of abuse because I'm an African-American woman of a certain age who doesn't look it, and I'm still struggling with health issues. I know I can't control others, nor do I want to, but through clothes and style I can control myself and regardless of any negativity or discouraging vibes I can continue to move forward with my head held high.

   In the past four years I've noticed a downward trend toward "sloppy dressing" and "disposable clothing" that has contributed to a lack of common courtesy and customer service in some of the retail stores I've visited. This didn't bother me that much before I got cancer, but when I didn't receive any help as a customer following my diagnosis except at the cash register, it did bother me. So what did I do about it? I used the skills I learned as a salesperson and a manager to help myself make my shopping expeditions worthwhile.

   Since I'm a Los Angeles-based fashion/feature writer too, I've had to learn how to coordinate as well so that I'm consistently well dressed when I'm out looking for stories. One day I might see a new store, and go in to meet the owner, and another day I might meet a stylist, model or designer at the bus stop and strike up a conversation that leads to an exchange of cards and information. In other words, whenever you see me in the city, I'm on the job and working my beat.

   Life doesn't stop for anyone, any time or anywhere, even when cancer enters the picture, and you can't stop growing because of it. The easiest way to keep doing that, and remain part of the world around you is to go out and buy something that'll make you feel attractive and remind you that you deserve a little treat now and then.

Enjoying the Shopping Experience Despite the Obstacles
Pre-shopping Preparations to do Before You Go Shopping:
1) Do a wardrobe inventory of everything you own by taking everything out of your closets and list them on a piece of paper by category. If you can't do it by yourself have someone help you.

2) Try everything on in front of a full-length mirror and determine how it makes you look and feel at the moment. Make a note of that on your wardrobe inventory list.

3) Study each season's trends in Vogue, Harper's Bazaar, and other top fashion magazines, then make notes about looks that you like and tear out photos of the designs that appeal to you.

4) Determine where you have to wear the clothes you need (i.e., at home, at work, doctor's appointments, medical procedures, chemo suite, hospital stay, exercise, etc.)

5) Make a wish list of what you want then determine your budget.

Shopping On the Days You Feel Like Going Out:
1) Take a shopping companion/stylist with you to help you carry things around the store, put items in the fitting room and try them on.

2) Find a store where you can be a "regular" and feel comfortable shopping so that you don't feel awkward asking for help when and if your appearance changes due to chemo, surgery or procedures.

3) On days you just feel like browsing, find a nice mall or shopping area and look at their window displays. One of my favorite places is Santa Monica Place where I used to love going on Sunday mornings. It made me feel better and more inspired to look at the display windows for Kitson, Coach, LeSportsac, Tory Burch, Kate Spade, Bloomingdale's and other stores before I walked to my Creative Arts Class at the Realm Studio. (Sponsored by Elizabeth's Canvas and CSC.)

Stores:
1) Style Xpress (3875 Overland Ave., Culver City, CA. 90232, 310-202-0480).
2) Goodwill National Store 32 (8905 Venice Blvd., West Los Angeles, CA. 310-845-9327).

Friday, May 23, 2014

Why Children Need Mindfulness Just As Much As Adults Do

By Carolyn Gregoire
The Huffington Post, Posted:  05/22/2014 3:33pm EDT    Updated:  05/22/2014 3:59 pm EDT  
 
In the growing conversation around mindfulness, we're constantly hearing about meditation in the workplace and tech CEOs who swear by the practice. But less attention is being paid to the quietly growing movement for mindfulness in the family, and the use of meditation to optimize the health, well-being and happiness of children. 
It's not just adults that can stand to benefit from cultivating a focused awareness on the present moment. Research is beginning to shed light on the power of mindfulness as an intervention for a number of behavioral challenges that children face. We're also starting to recognize that mindfulness practices could be beneficial for children for the same reasons it helps adults, contributing to reduced stress, improved sleep quality and heightened focus.
At increasingly younger ages, kids are facing higher levels of stress, and it may be taking a significant toll on their health. Stressful events in childhood can increase the risk of developing health problems as an adult, but the impact may hit much earlier. A recent University of Florida study found that stressful events can impact a child's health and well-being almost immediately, and can contribute to the development of physical and mental health problems and learning disabilities.
Sonia Sequeira, Ph.D., Translational Research Assistant Manager at Memorial Sloan-Kettering Cancer Center, has been practicing yoga and meditation for nearly 20 years, and has practiced with her own children for years. Now in her work as a mindfulness researcher, she's brought contemplative practices to children ages 3-18 who are struggling with autism, cancer, and other physical and mental health problems. Currently, she's using meditation and chanting to help relieve pain in children with cancer.
It may seem like a tall order to ask your kid to meditate -- given that it can be a struggle just to get a child to sit down or eat breakfast -- but Sequeira insists that in her years of working with children, she's found just the opposite.
 "There's an initial resistance, which I think is cultural, and usually it occurs in the presence of the parent," Sequeira told The Huffington Post. "But it extinguishes very quickly. Teaching mindfulness to children has always been the easiest for me because there's no set patterns, or at least they're not set in stone yet. With adults its much more difficult."
Learning mindfulness practices -- including meditation, breathing exercises, yoga asana (postures) and chanting -- can have a significant long-term affect on a child's development.
"[In my research], what really mattered was finding practical tools that were not an on-off or intermittent practice for children, but something they could really grow with and that could affect their physiology as they grow from their young childhood into adolescence," says Sequeira.
Here's proof that children need mindfulness just as much as adults do.
Mindfulness can help kids to thrive at school.
Most of the research on mindfulness for children has been conducted in the school setting. Recent studies have shown school mindfulness programs to be effective in reducing symptoms of depression, stress and anxiety among secondary-school children for up to six months after the program. Such programs can also help students focus during exams, as well as reducing stress and boosting happiness among high school students.
Susan Kaiser Greenland, author of The Mindful Child, is one of increasingly many parents fighting for a "mindful revolution in education," explaining mindfulness programs can aid kids in developing good habits that will help make them happier and more compassionate.
More and more of these programs are beginning to crop up. The Mindful Moment program in Maryland high schools has students start and end each day with a 15-minute yoga and meditation session, and provides a mindfulness room available for personal use throughout the day. The program aims to reduce stress among students and teachers, and to increase four-year graduation rates.
 
It can be an effective intervention for autism.
Recent research, conducted by Sequeira and colleagues and published in the journal Autism Research and Treatment, has suggested that meditation has a great deal of potential as a treatment option for children with autism.
"Meditation is one of a few interventions that have been shown to effectively strengthen self-control and character development simultaneously," the researchers write in a report. "There is much to be gained by exploring meditation as a strategy to override impaired brain synchronicity and debilitating symptoms arising in early years of persons with autism."
In autism and many other psychological imbalances, the connecting thread is a lack of rhythm, says Sequeira. There's a challenge of balancing the inner and outer world, and this can distort relationships and interactions with others. In the case of autism, environmental cues become so augmented that the child shuts down from the world to protect themselves. Mantra meditation in particular (a type of meditation that involves the repetition of a word or sound) can help restore a sense of rhythm.
"When you create internal rhythm, there's a harmonizing and balancing effect," explains Sequeira. "It facilitates communication, incubation of thoughts... it tells you that you're in a safe environment and there's no threat." "It truly is a top-to-bottom response, and with the children, it restores a natural ability to respond inside to rhythm."
Children with autism respond well to mantra because it facilitates response, she says.
It can help kids with ADD and ADHD.
Being mindful is, at its core, the ability to sustain a focused awareness on the present moment, and practicing mindfulness has been proven to help boost our powers of focus and attention. And it may be just as effective for children as it is for adults.
A 2011 study published in the Journal of Child and Family Studies demonstrated the effectiveness of an eight-week mindfulness program for children ages 8-12 with ADHD, along with a mindful parenting program for their parents. The researchers found that the program reduced parent-reported ADHD behavior. It also increased mindful awareness among both parents and children, and reduced parental stress.
Such programs may be a highly effective intervention either alongside or in the place of traditional ADD and ADHD medications, which come with side effects and may lose their effectiveness over time.
“There are no long-term, lasting benefits from taking A.D.H.D. medications,” James M. Swanson, a psychologist at the University of California, Irvine, told the New York Times. “But mindfulness seems to be training the same areas of the brain that have reduced activity in A.D.H.D... “That’s why mindfulness might be so important. It seems to get at the causes.”
It can help children with cancer and other serious health conditions.
Sequeira has been hard at work for over a year now on a pilot program bringing mantra meditation to children with cancer as a way to reduce pain. While the study is still underway and the results have not yet been finalized, she's seen an overwhelming positive reaction from both the children and their parents.
"Frequently the children remark that they want to continue beyond the time that's scheduled, even beyond the point where they had heightened pain," says Sequeira. "They wanted us to stay there chanting with them for a while. Parents from all over the world speaking different languages are united by mantra that doesn't have a language meaning but that touches their heart. They felt an enormous sense of peace and did feel that they were contributing to the healing of their children."
The kids Sequeira works with at Sloan-Kettering also use what she calls a "worrywart waste basket," in which they make a practice of writing down their concerns on a piece of paper and throwing them away. "They know to do that, and to chant and resolve some of the tension that arises," says Sequeira.
A mindful family upbringing encourages children to self-actualize.
Mindful parenting, as defined by Mindfulness-Based Stress Reduction founder Jon Kabat-Zinn, consists of "paying attention to your child and your parenting in a particular way: intentionally, here and now, and non-judgmentally." As Sequeira puts it, creating a mindful family is about "healing the environment and healing the relationships."
To begin to create a more mindful family and incorporate mindfulness into their children's lives, parents can start with a daily meditation, yoga or breathing practice. Family dinners can also become mindful by not allowing phones at the table and having a moment of gratitude for the food. Even simple things like positive affirmations and encouraging children to think before they speak can foster an environment of calmness, presence and compassion.
"A child is imprinted with many influences... and all of this shapes a personality" says Sequeira. "When there's a mindfulness approach to living, it ultimately becomes the personality of the child to truly manifest and become who they are -- not trying to become a doctor or a lawyer, but trying to discover their gifts. At the same time, it allows the parents to wean themselves from this very analytical, competitive, linear thinking in life, trying to carry children towards certain goals, which ultimately is stressful for the parent."
This "group healing," says Sequeira, will hopefully one day become the basis for a more mindful society.
 
 

FAMILY CONNECTIONS: FOR PARENTS: TALKING TO YOUR CHILDREN ABOUT CANCER

Dana Farber Cancer Institute

Many parents tell us that when they are diagnosed with cancer, they're most concerned about how the disease and its treatment will affect their families. Often their top priority is to limit both the short- and long-term effects of their illness on their children.

 
When you first get your diagnosis, you may worry about how to let your children know that you have cancer. While you have taught your kids about many other important things, talking to them about your illness probably takes you off guard.

It's common for parents to feel a little lost about whether, how, and when to share this information with their children. We'd like to share what other families found helpful as they faced the challenges of a cancer diagnosis, and to describe what health care professionals think are the most important aspects of these early conversations.

Remember: There are no absolute right or wrongs. Like most of parenting, the actual words you use are not as important as letting your children know that you are there for them, and that they can bring their questions and fears to you. You may even find that as you talk about your illness, you and your children develop a closer connection that strengthens your discussions about other issues.
Each family finds its own unique way to adjust. You will find yours.

Families communicate in many different ways. Some parents know immediately that they will tell their kids about their diagnosis at the earliest opportunity. Others know they will eventually discuss the diagnosis with their children, but may delay until they have more information about the cancer and its treatment, or until the children are a bit older. Still others worry that they are burdening their kids by including them in discussions.

Deciding what to do, and when, can be an important first step
  • Your children, no matter how young or old, will realize that something is wrong. If they don't know what it is, they may imagine terrible possibilities that are even scarier than a cancer diagnosis.
  • If you don't talk to your children, they may eventually learn of the diagnosis from others or by overhearing a conversation. If you are the first to share the news, they will get a more accurate and hopeful picture.
  • You don't have to discuss everything all at once. Don't talk beyond their attention span or level of understanding. Several conversations over time usually work better in talking with kids.
  • You may worry that you won't be able to answer all your children's questions. While many parents share this concern, the truth is that you don't have to know everything to begin this conversation. When you are stumped by a question, you might say, "I don't know. That's a good question, and I'll find out the answer for both of us." In most cases, kids will readily accept this response, especially when you quickly get back to them with an answer.
By beginning the conversation, you help your family manage this new challenge. If you decide not to talk to your children, you may, without realizing it:
  • Communicate that your illness is too scary to talk about.
  • Make it hard for your children to trust what you say once they do learn of your illness.
  • Imply that neither you nor they are up to coping with this situation.
  • Place additional strain on yourself and others who know to keep a secret. This tension has impact on the entire family.

Take some time to prepare yourself

Prepare yourself by thinking about what you hope to convey to your children through your words and actions. It's perfectly understandable if you find this difficult. Talking to your children about your cancer may be one of the hardest things you've ever had to do. However, when parents give their children a chance to share their worries, they often feel a sense of relief and are able to move forward as a family in dealing with their situation.

You may want to share your ideas and feelings about telling your children ahead of time with your partner, someone from your health care team or faith community, a friend, therapist, or social worker. You may find it helpful to write down your most important points so you're able to pay attention to your kids and their reactions.
You don't need to follow a script
Talk as naturally as possible, and invite your children to ask questions early on. You could encourage them to tell you what they already know, what they would like to know, and how they think your illness will affect them and the family. Remind them that it's okay to ask you questions, and that you'll do your best to answer. As a result, you show them it is possible to talk together about hard issues.

Anticipate how you might respond to your children as you talk together. It's okay to be emotional; this is tough stuff. You may find that when you do include them in your situation, your kids feel closer to you and have a better understanding of their own thoughts and feelings.
Remember that you are talking to your children to inform and support them. You might not want to talk to them if you are very upset
When that happens, it may be better to either delay telling your kids until you feel somewhat stronger or to ask for help. You may need a chance to talk further about your own concerns first as a way to feel more ready to share with them. You can ask your partner to help out, or invite someone else to join you for this discussion. You might even consider asking this second person to lead the conversation.

This doesn't mean you have to be unemotional when you talk with your children about your illness. It's fine to let them see that you have feelings, or even to cry together. The key is for you to stay focused on their concerns and questions as you talk.

Consider also the possibility that your kids can tolerate, and maybe even benefit from knowing that you, too, are willing to share your emotions. For example, you might say, "This is all new to me, too, and I feel worried and sad right now. But we will get through this together, and I will feel better sometime soon."

When you include your kids in your family's experience of your illness rather than "protect" them from feeling upset or sad, you give them permission to have and share their own responses. You can let them know that their feelings may change over time, just as yours will.

Decide who you would like to be present

Do you and your partner both want to be there? If that's not practical, can you communicate your partner's support and point of view? Is there another adult you want to include? Who would you like to begin and lead the discussion? Is it appropriate to talk to your children when they are all together or individually (knowing that depending on ages, siblings often share with each other)?
Pick your time carefully
Ideally, plan your conversation so that you can spend as much time as needed to answer your kids' questions and to comfort them if they are upset. Try not to begin this important discussion when you are tired, pressed for time, or feeling especially ill or discouraged.

Likewise, start this conversation when your children are well rested and free of other commitments. But don't be surprised or upset if many of these conversations are quite short. If your children show signs that they have had enough, bring your conversation to a close and return to it later.

Children may need different approaches, depending on their age

To a large extent, what you say and how you say it will depend on your kids' ages and capabilities. If your family includes children of different ages, you may decide to talk to them individually or in pairs rather than as a group. In this way, you can tailor what you say to their ability to understand it.
Preschoolers
Children this young do not need a lot of details. They are very concrete and will tend to focus on the cancer symptoms or side effects that they can see, such as hair loss, rather than on what is happening invisibly inside your body. Use a doll, stuffed animal, or picture to show your children where the cancer is located in your body. Make it clear that cancer is not contagious, and that your kids cannot "catch" it from you.

Ask your children if they have questions about what will happen now that you have cancer. Answer only what they ask. Use simple, direct words. Attention spans at this age are short, so keep conversations brief, and be prepared to come back to the discussion at another time.
School-aged children
You may end up using a variety of approaches with children in this group. With younger kids, you may need to keep the discussion brief, and use a stuffed animal, a doll, or a picture to help your children understand, just as you would with preschoolers. Be prepared for your children to go off and play as though they are unaffected by your news: kids of this age may react later, or may show their response through behavior (being angry or quieter than usual) rather than words.

Older elementary school children may be familiar with the basics of the human body, so use their knowledge as a starting point for your conversation. For instance, if your children have already studied cells, you might explain that cancer cells do not behave the same way as normal cells. Provide more details, such as the name of the cancer and the basics of your treatment plan.

Emphasize that cancer is not contagious and they did not do anything to cause your cancer. Kids of all ages, including teens, can worry about this, so offer lots of reassurance.
Teens
Teenage children have heard a lot more about disease and cancer than their younger siblings. As a result, they may be quite worried, but afraid to upset you, or themselves, by asking questions. Take your cue from them whenever possible, and share as much information as they seem to want and are ready to handle. And while they may appear in control as you talk together, be prepared for some emotional response, either as your discussion continues, or at some later time. Your teen's reactions may, in turn, trigger your own feelings, which may be tough on both of you. But try not to back away: in the long run, everyone will benefit if you can develop enough trust to share painful thoughts and feelings without worrying about being judged or questioned.

Ideally, talk to your children as soon as possible after you are diagnosed

In this way, you, not your neighbors or your children's friends, determine what your kids will know about your illness. You will also prevent their finding out by overhearing a conversation or being consoled by a concerned adult who doesn't realize you haven't mentioned your diagnosis.
Let your children know if you have confided in others and what you have told them. By sharing this with your children, you help them realize that they don't have to face your illness alone, and may encourage them to talk about their concerns with trusted friends and relatives.

Provide your children with key information

  • "Mom (or dad) has a disease called cancer."
  • Explain that cancer is actually the general name for many different diseases in which cells that are not normal divide more rapidly than usual. These abnormal, quickly growing cells often develop into a tumor. Cancer can also spread to other parts of the body, but it is not contagious: your children cannot "catch" cancer from you.
  • Talk with them about the causes of cancer. You might start by asking how they think cancer gets started. You might mention some of the known behaviors that seem to increase a person's chances for getting cancer, such as smoking or spending lots of time in the sun. You can also point out that we don't know all the causes of cancer, but experts are studying this question and coming up with more answers all the time.
  • Let your kids know where the cancer is in your body, and how you will be treated. Tell them if you will be in the hospital or away from home for extended periods of time.
  • Depending on their ages, you might also ask your children how they would like to respond when others ask them questions about your health. This discussion also gives you a chance to check on how much your sons and daughters actually understand about your illness, and what issues you may need to clarify for them.
  • Explain to older kids and teens that your illness will probably affect the family's daily routines and responsibilities, and you will keep them posted as these changes occur.
See What children want to know for more suggestions.
Be prepared for your children to ask, "Are you going to die?"
Most parents dread this question, often because they are afraid of how they and their kids will react to the discussion. In addition, parents frequently don't know what to say. Consider saying something like, "People do sometimes die from cancer, but lots of people don't. I am not dying. I am going to take strong medicine and/or have surgery to get rid of my cancer. I will be checked often by the doctors."

Also, whenever possible, share positive information. Depending on your circumstances, you might say, "There are lots of new treatments for cancer," "The doctors have given me some very strong medicine that they think will help get rid of the cancer, and they think that I have a very good chance of recovering," "I am doing everything I can to make sure I get better," or "They caught my cancer early, before it had a chance to do much damage."

Ask your children what they have heard about cancer or if they know someone whose family member has had cancer. Children can assume that cancer is all the same illness. You can share that there are many types of cancer and treatment, and how someone is affected can be different for each person, even when patients have the same type of cancer.

See Questions parents often ask for more suggestions on how to answer "Are you going to die?" Also remember that you will have the chance to revisit this conversation many times, and that you will be able to repeat complicated information and correct your children's misunderstandings. You don't have to cover everything in one discussion.

Give your kids time to absorb the news

Over time, your children will hear you and absorb the important information, but they may not be able to do this right away. Many children initially express their reactions through their behavior rather than through words, so you may learn more about what they are thinking and how they are feeling by observing changes in their play, mood, or friendships. For instance, your daughter who says little during your initial conversation may have trouble sleeping over the next several nights, or you son may walk away wondering who is going to drive him to Little League now that you're sick.
Be patient, try to accept your kids' reactions, and don't worry unless these reactions persist over time.
"Stress warning signs in children" offers more information on figuring out when your child may be really struggling with the news of your diagnosis, and if he or she may need some additional support.

Don't expect perfection from your children, your partner, or yourself

There is no "perfect" way to have this conversation. You may burst into tears before saying a word, or snap at your partner for telling your kids to "behave," or cringe when your son makes light of the whole conversation. Forgive quickly. This is a tough time for everyone.

Remember that this conversation is only the first of many and that you can revisit important information as often as necessary

Your children may not have much to say during your first conversation with them. Try to encourage them to ask you questions or tell you their worries, but don't worry if you and your partner do most of the talking. You and your sons and daughters may frequently revisit how and why people get cancer, what side effects mean (and don't mean), and how your illness will affect your and their lives. The important thing is that by including your kids in these discussions, you let them know you are open to hearing their questions and answering them honestly.

To see article in original source, visit: http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Family-Connections/Information-for-Parents/Talking-with-Kids-about-Cancer.aspx

L.A. AREA HEALTHCARE PROVIDERS TO ISSUE GUIDELINE FOR END-OF-LIFE CARE

                    
Nearly 80% of California adults said they would like to talk with a doctor about end-of-life wishes
End-of-life care is famously expensive.
 
Copyright © 2014, Los Angeles Times
 
"We see a lot of harm at the end of life," endocrinologist Glenn Braunstein says.
Sam Sale knew his time had come. Hospitalized repeatedly since suffering a severe blood infection in November, the 93-year-old was done with all the poking and prodding.  His doctors at Cedars-Sinai Medical Center thought he might have suffered a minor stroke. The avid UCLA sports fan couldn't go to his beloved football games anymore. He wanted to sleep all day. He didn't want to eat anything — unless it was ice cream.  When his wife, June, took him to urgent care in mid-April to deal with yet another woe, he told her he didn't want any more of it.
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FOR THE RECORD:

Hospital guidelines: An article in the May 21 LATExtra section about a group of hospitals setting guidelines for how to tell patients about end of life care did not identify one of the hospitals involved. Huntington Hospital in Pasadena is also endorsing the recommendations.
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"He said, 'I'm tired of this. Let me go,'" she said. "So we did."  Sam Sale died five days later, at home in Los Angeles, surrounded by his wife, children and grandchildren. His family buried him with UCLA pompoms attached to his casket.  "It was a peaceful death," said June Sale, who is 90 and says she'd like to die at home as well. "I would hate to be in the hospital, with needles and tubes and whatnot, and lights shining on you. I've had friends who died that way."

On Thursday, a coalition of Los Angeles-area healthcare providers — caring for millions of Angelenos among them — will endorse some groundbreaking guidelines designed to help patients like the Sales take more control over their final months, weeks and days. The hospitals will urge their doctors and nurses to help patients specify their hopes for the end of life through advance-care planning, and understand how to seek palliative care if a patient wants it.
The participants include Cedars-Sinai, HealthCare Partners Medical Group and Affiliated Physicians, Kaiser Permanente Southern California, Keck Medical Center of USC, Los Angeles County-USC Medical Center, MemorialCare Health System, Olive View-UCLA Medical Center, Providence Little Company of Mary Medical Center Torrance, Providence TrinityCare Hospice and the UCLA Health System.

The guidelines call on doctors to explain clearly to patients when a medical treatment under consideration — including interventions such as feeding tubes, intubation or dialysis — "may deprive the person of life closure (the ability to say 'forgive me,' 'I love you' or 'goodbye') or preclude a peaceful death."

"We see a lot of harm at the end of life," said endocrinologist Glenn Braunstein, vice president of clinical innovation at Cedars-Sinai and a leader of the guideline effort. "We said, 'We have to fix this."
Kate O'Malley, a researcher who studies end-of-life care at the California HealthCare Foundation in Oakland, said the broad-based effort was unlike any she had seen before in the state.
"To see these health systems own this is extremely exciting to me," she said, calling end-of-life talks "one of the most important things in healthcare that never happens."

A 2011 survey of California adults conducted by O'Malley's organization found that nearly 80% of respondents said they definitely or probably would like to talk with a doctor about end-of-life wishes, but that only 7% had done so.

More than half said they had not communicated their end-of-life wishes to a surrogate who might make decisions on their behalf if they are unable to make decisions for themselves. Two-thirds said they wanted a natural death if they became severely ill; only 7% said they would want everything done to prolong life.
But what happens all too often, said James Leo, an intensive care specialist at MemorialCare Health System who worked on the guidelines, is that patients who haven't expressed their plans arrive at the hospital already incapacitated.  An autopilot scenario unfolds, in which patients receive a level of care that they may never have wanted.

"With a patient who has not made clear their wishes, our default is to provide care to keep them alive," Leo said. "That can sentence a patient to spending the rest of their days on machine support in the intensive care unit, not in a supportive environment where they can be with their families."
But despite Californians' professed interest in taking control over their end-of-life care, doctors and patients have found it hard to follow through with advance-care planning.
Patients sometimes bristle at the notion of discussing shifting to palliative care — a range of services that aim to improve the quality of life for people with chronic illnesses, whether death is imminent — because they mistakenly equate it with giving up on care altogether.

"What the doctor is saying is, 'We don't think you should get harmful care,'" Braunstein said. "The patient will not be abandoned."

End-of-life care is famously expensive. The Dartmouth Atlas Project reported last year that spending during the last two years of life was about $112,000 per patient in Los Angeles.  As a result, some patients might fear doctors are steering them away from treatment as a means of cutting costs. Neil Wenger, director of the UCLA Healthcare Ethics Center and a collaborator on the guidelines, said that the question of costs was "a complicated issue," but that it could "cut both ways."

After discussing options during advance-care planning, some patients will still choose intensive end-of-life care, he said. Additionally, if ICU beds open up when patients choose palliative care in lieu of futile treatment it could increase capacity for equally expensive, but potentially more beneficial, care.
"We think there are people who are not getting transplants because there's no availability of beds," Wenger said. "This isn't necessarily to save money. It's to allocate resources more effectively."

O'Malley, of the California HealthCare Foundation, said she thought the sheer number of institutions signing on to the new guidelines would give doctors some "cover."  "This allows them to dispel any sense of mistrust," she said. "When people ask, 'Why are you talking to me about this?' they can say, 'Our whole community supports this.'"

But even when end-of-life conversations are accepted as standard practice and patients have a clear understanding of all their options, medical professionals still often resist, Wenger said.
Talking about death is difficult and takes time, he said. Doctors, who are experts in saving lives, can find it hard to shift gears and focus on comfort. Systems aren't in place to make sure it happens.
 
Braunstein said the institutions' public support of the guidelines could reinvigorate efforts to change that. At a conference Thursday at Cedars-Sinai, representatives from the institutions will detail what they each do to promote advance-care planning. The group will reconvene to report on its progress.
Clergy will also speak during the Thursday meeting, Braunstein said. He hopes religious leaders will return to their congregations and "demystify" end-of-life planning by explaining "that we're trying to improve their end of life, not create death panels."
June Sale, who describes herself as Jewish but secular, said a rabbi's opinion wouldn't make any difference to her. She has already signed her advance-care directive, which instructs her doctors not to resuscitate her if the end is near.  "It spells out: if you're on the way out, don't try to keep things going," she said. "I have it notarized. There is no question about it."


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