Poll Finds Wide Gap Between the Care Patients Want and Receive at End of Life Few older Californians discuss treatment preferences with their doctors

Poll Finds Wide Gap Between the Care Patients Want and Receive at End of Life
Few older Californians discuss treatment preferences with their doctors

(Oakland, CA) – When it comes to how they want to spend their final days, Californians prefer to die a natural death at home without being a burden, financially or emotionally, on their families. Yet according to a new poll released today by the California HealthCare Foundation, a disparity exists between what people say they want at the end of life and what actually occurs.

The survey, Final Chapter: Californians’ Attitudes and Experiences with Death and Dying, finds nearly 8 in 10 Californians said that if they were seriously ill, they would want to speak with their doctor about end-of-life care, but fewer than 1 in 10 report having had a conversation, including just 13% of those age 65 or older.

Additionally, while 82% say that it is important to put their wishes in writing, less than one quarter have actually done so. More than half say they have not talked with a loved one about the kind of care they want at the end of life.

The survey explores differences in attitudes toward death and dying among major ethnic groups in California. Top concerns vary. For example, Latinos rate “living as long as possible” much more highly than other groups.

”With end-of-life treatment, there is a clear gap between wishes and actions,” said Mark D. Smith, MD, MBA, president and CEO of the California HealthCare Foundation, which commissioned the survey. “People consistently stress they want to die comfortably and without pain. If so, the single most important thing they can do is to talk to their loved ones and physician, and put their wishes in writing, something most Californians aren’t doing.”

Preferences Not Being Followed
The survey finds patients’ wishes regarding treatment are not always honored. Only 44% of Californians who have lost a loved one in the last 12 months say their loved one’s end-of-life preferences were completely followed and honored by their medical providers. These numbers drop to 26% for those whose loved ones experienced a language barrier and 25% for patients who were uninsured at the time of death.

Similarly, most Californians would prefer to die at home, but that is not typical. Seventy percent of those surveyed said their home is their preferred place of death, but only 32% passed away in their homes, according to death records from the California Department of Public Health.

Paying for the Conversation
A major barrier to effective end-of-life planning is the lack of frank discussion between patients and health care providers. The average 15-minute office visit does not leave time to explore the natural progression of illness and the preferred treatment options for those nearing death.

As part of its original package to expand health coverage, the Obama Administration proposed requiring public and private insurance to cover voluntary conversations about end-of-life planning between patients and providers. After the issue became politicized, the idea was dropped from the final bill.

The new poll finds broad support among Californians, regardless of political affiliation, for reimbursing doctors to talk about end-of-life options. Eighty-four percent of Democrats, 72% of Republicans, and 80% of Independents say it would be a good idea to pay for the conversation.

Putting a Plan in Place
To help patients have their say if they are unable to speak, CHCF promotes the use of Physician Orders for Life-Sustaining Treatment (POLST). Developed in Oregon two decades ago, POLST is a standardized medical order form (in California it is printed on bright pink paper) that indicates the specific types of treatment a seriously ill patient does or does not want. The voluntary form is signed by the doctor and the patient and is designed to travel with a patient across medical settings.

POLST complements, but does not replace, an Advance Health Care Directive. An Advance Directive, which should be filled out by any adult regardless of one’s health status, provides a broad outline of a person’s wishes relating to end-of-life care, and allows an individual to appoint a “health care proxy” – the person they want to speak on their behalf. Only POLST, however, carries the power of a physician order.

According to the survey, nearly two-thirds of Californians said they would want to complete a POLST form if they became seriously ill, including 77% of those who are 65 or older. Seventy-one percent said they would want a seriously-ill loved one to complete the form so they would understand their wishes.

The State of Palliative Care
In 2009 nearly 100,000 Californians with serious illness died in hospitals, according to public health records. Palliative care treats pain and other symptoms, provides psychosocial and spiritual support, and ensures that medical treatments align with patient and family wishes. Increasingly, hospitals are recognizing the enormous value of palliative care to patients who are seriously ill.

CHCF is releasing an accompanying report on palliative care: When Compassion Is the Cure: Progress and Promise in Hospital-Based Palliative Care. Produced by the National Health Foundation and the University of California, San Francisco Palliative Care Program, it profiles the state of palliative care in California’s acute care hospitals.

Among the findings:

• Palliative care consultation services have experienced a great deal of growth in recent years: Between 2007 and 2011, pediatric services increased by 128%, while adult services increased by 24%.
• Most palliative care services have modest budgets, with 60% operating on less than $300,000 annually.
• Every major metropolitan area in California except Los Angeles increased the number of hospital-based palliative care programs between 2007 and 2011. The percentage of Los Angeles hospitals with such programs actually decreased.

More Online
Additional resources, including a consumer guide for developing an Advance Directive from the American Bar Association, and videos of individuals and family members reflecting on their experiences with these issues, can be found at www.chcf.org/endoflifecare.

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About Final Chapter: Californians’ Attitudes and Experiences with Death and Dying
On behalf of CHCF, the survey was conducted by Lake Research Partners in late 2011 among a representative sample of 1,669 Californians age 18 and older, including 393 respondents who have lost a loved one in the past 12 months. The margin of error is 2.4 percentage points for the total results.

About When Compassion Is the Cure: Progress and Promise in Hospital-Based Palliative Care
This survey was developed by the Palliative Care Program at the University of California, San Francisco and administered by the National Health Foundation in the fall of 2011. All 377 acute care hospitals in California were asked to participate. Ninety-six percent responded, and 71% of respondents provided detailed information about their palliative care programs.

About the California HealthCare Foundation
The California HealthCare Foundation works as a catalyst to fulfill the promise of better health care for all Californians. It supports ideas and innovations that improve quality, increase efficiency, and lower the costs of care. For more information visit www.chcf.org.

About the Coalition for Compassionate Care of California
The Coalition for Compassionate Care of California is a statewide partnership of nearly 200 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California. For more information visit www.CoalitionCCC.org.

Media Contacts:
Steven Birenbaum, California HealthCare Foundation
510-587-3157, sbirenbaum@chcf.org

Annette Majerowicz, Behr Communications
310-576-0949, Annette@behr-communications.com

Join me as I interview the Michael Palumbos, ChFC – Family Wealth Advisor, author of “Your Family Legacy – 32 Ways to Preserve Your Family’s ‘Wealth’ for Generations,” on March 5th at 9AM PST, 12PM EST

Join me as I interview the Michael Palumbos, ChFC – Family Wealth Advisor, author of “Your Family Legacy – 32 Ways to Preserve Your Family’s ‘Wealth’ for Generations,” on March 6th at 9AM PST, 12PM EST on http://www.blogtalkradio.com/kindethics/2012/03/06/interview-with-michael-palumbos-your-family-legacy

Your Family’s Legacy is about more than money. It is about the values and meaning you leave for future generations. You don’t need to have a lot of money to harness the power of financial planning. We all have to plan for our futures and the future of our loved ones.

This is a must read from an expert who understands the power of combining financial planning with creating a purposeful life.

“Michael identifies the tremendous need for values planning in conjunction with financial planning. The most important thing we can provide our children, our grandchidren and our great grandchildren is the ability to carry forward what we value as a family. The financial resources we accumulate and distribute for their use are simply a tool to further the family mission. The most solid of families share common values over financial resources. Planning the
finances for a family is simply not enough in today’s world.”
— John Enright, Owner Custom Wealth Architects

The book is available on Amazon:
http://www.amazon.com/Your-Family-Legacy-preserve-generations/dp/0985127503/ref=sr_1_1?s=books&ie=UTF8&qid=1329093720&sr=1-1

Michael Palumbos
200 Meridian Centre
Suite 150
Rochester, NY 14618
(585) 350-7273
info@MichaelPalumbos.com
www.MichaelPalumbos.com

Have a kind and respectful day.

Interview with Beth Boynton, RN, MS, “Improving Safety in Hospitals through Better Communication” on Feb. 23, 9AM PST

Join me as I interview, Beth Boynton, RN, MS who is a nurse consultant, national speaker, trainer and author of the book, “Confident Voices: The Nurses’ Guide to Improving Communication & Creating Positive Workplaces” on Feb. 23rd, 9AM PST on http://www.blogtalkradio.com/kindethics/2012/02/23/beth-boynton-rn-ms-improving-communication-in-hospitals.

In addition to teaching and writing about the importance of collaboration, building the skills and addressing the challenges, Beth engages nurses and other health care professionals in honest and respectful discussions about individual and organizational factors that contribute to problems in communication, patient safety and workplaces violence. Her interactive workshops and leadership coaching provide a platform from which safer, more cost-effective and quality care can emerge while supporting work environments where nurses, patients, families, doctors and all health care professionals and staff are respected.

She is a regular columnist for the ANA-Maine journal and her newsletter, “Confident Voices” has drawn audiences across the country and internationally. She is in the process of closing the newsletter and starting a blog, called: “Collaborative Nursing” where she hopes to attract consumers and healthcare professionals in empowering dialogues that will lead to positive change. She continues to practice as a Registered Nurse in an Alzheimer’s Care Unit.

To buy Beth’s book: http://www.amazon.com/Confident-Voices-Improving-Communication-Workplaces/dp/1440441707/ref=sr_1_2?ie=UTF8&s=books&qid=1287157834&sr=8-2

What are Nurse Leaders saying about “Confident Voices”? http://www.bethboynton.com/bethboynton.com/What_are_nurse_educators_saying_about_Confident_Voices.html

Many of Beth’s articles are available for free download at www.bethboynton.com. You’ll also find more info about her workshops, coaching, testimonials, and clients.

You can also watch her on YouTube:

“Why is Communication so Hard for Healthcare Professionals?”
http://www.youtube.com/watch?v=lL4mxSadn5Q (6 minutes)

“Interruption Awareness: A Nursing Minute for Patient Safety”
http://www.youtube.com/watch?v=PGK9_CkhRNw (12 minutes)

Have a kind and respectful day.

Getting Caregivers to Ask for Help – Viki’s Four-Step Process

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. Leo Buscaglia

I have never been very good at asking for help and like many family caregivers, I didn’t think that my own needs mattered. Thinking I had to do everything all the time caused me to have two breakdowns; once during my early years of caregiving and again the last year of my caregiving journey. (I was a caregiver for over 17 years.)

I wish I had known about the following statistics from the MetLife Study:

Family caregivers experiencing extreme stress have been shown to age prematurely and this level of stress can take as much as 10 years off a family caregiver’s life.

40% to 70% of family caregivers have clinically significant symptoms of depression with approximately 25%-50% of these caregivers meeting the diagnostic criteria for major depression.

Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves.

I don’t know which statistic frightens me the most. But I do know that I have paid an emotional, physical and financial cost for being a caregiver. (I also loved taking care of my family.)

But it didn’t have to be that way. I could have and should have asked for help. But I am a caregiver and when people told me, “Just make time for yourself,” it wasn’t that easy.

If you think about who in a family becomes the caregiver, it will usually be the person who is more nurturing and generous with their time. So by nature, the caregiver is the type of person who already gives more than others. And this becomes a vicious cycle of give – give – give instead of give – receive – give – receive.

I recently said to my friend who is an overwhelmed caregiver, “Maybe now is a good time for the rest of your family to learn what they need to do to help their grandfather.” What I heard back from her were lots of excuses:

They don’t want to help
They don’t know what to do
They don’t know him like I do
They will just make it worse
I don’t have time to teach them
It is just easier if I do it
I get tired of asking
I don’t think they would help, even if I asked
Why should I have to ask, they should just know what to do
I don’t want to be a bother
It is too much effort to ask

Sound familiar? I realized in that moment that it isn’t always that the family won’t help; it is the caregiver who is resisting asking for help. So let me ask you. If you had a broken shoulder, would it be okay to ask someone to carry your groceries to the car? If your car broke down, could you call for a tow truck? When your loved one needs help, don’t you get them the help you need? Then why don’t you deserve the same attention? Your needs matter and you deserve to have someone help you.

Viki’s Four-Step Process

Step 1:
I encourage you to explore what is keeping you from asking. Write down what goes through your head when someone says, “You should just ask for help.” What are your resistance statements?

Step 2:
Take your list of resistance statements and put a statement beside it to help you get past what has been preventing you from asking for help. Here are a few examples caregivers have come up with:

They don’t want to help – Well I don’t know this because I haven’t given them a chance
They don’t know what to do – I could teach them
I don’t have time to teach them – You don’t have time because nobody is helping you. If you teach them now, then they can help at other times in the future.
It is just easier if I do it– Only the first time.
Why should I have to ask, they should just know what to do – Would I have known what to do before I became a caregiver? Then how would they know?

I am not saying you will be able to get past your barriers right away, but you need to begin so you won’t break down like I did. One thing that helped me was to realize that the other person won’t do what needs to be done as well as I would. They may do things slower, awkwardly at first, and in their own way. But that is okay because you are going to get free time and your loved one will be okay.

Step 3:
Make a list of all the things that would help you such as practical, emotional, financial and information support. Write a really long list and carry it with you so when people say, “What can I do to help?” you can pull out the list, hand it to them, and ask them what they would like to do.

Ask for specific things:
Can you call mom each week and ask her about her favorite memories or talk to her about what is worrying her?
Can you call me every day to check on me? (This can be very helpful to keep your depression under control.)
I don’t have time to read this book about Maria’s disease. Can you read it and then send me the main points?
Can you research what is the best wheelchair to buy?

People can help from a distance:
Can your brother listen to Dad’s doctor’s appointment by speaker phone?
Can they do the shopping for groceries online and have the food delivered?
Could they pay for someone to come to the house to give you a massage?
Can they take over paying the bills or set up automatic bill pay for you?
Can they send $51 a month so you can pay for three hours of respite care?
Ask someone to create a phone tree to disseminate information. This way you don’t need to make all the calls. Have others spread the news.

Local help:
Mom needs a ride on Thursday for her haircut.
Could you pick up some milk and eggs when you go to the store today?
I need someone to come and clean my kitchen.
Can you sit with Bob on Thursday night so I can go to a class about coping with dementia?

These are just a few ideas. I am sure you can come up with lots of ideas, big and small. (Don’t hesitate to put everything on the list. You will be surprised by what people are willing to do.)

Step 4:
Ask a lot of people. You may need to ask 5 people to find one that will help you but that is okay because now you have one person who will help you. Ask people for things they can actually do. Different people have different abilities. Show them the list and let them choose what they would be comfortable doing. Tell them the deadline for when the task needs to get done.

Oh no, I hear your resistance statement coming through. “There is nobody I can ask.” Here is my response to break through your resistance. There are more people in your circle of friends, family and community than you think. Call a local faith community and ask for help. (You don’t even need to belong to that church or synagogue.) Call the Area Agency on Aging in your town and tell them what you need. They can help connect you to resources. Tell the people in the hair salon about the struggles you are facing and maybe they know someone who can help. Many high schools are requiring kids to do community service hours. Call the school and ask to have someone assigned to help you.

It may feel like a lot of work to begin to ask, but don’t let this stop you. This is another of those resistance issues. Remember that you are not just asking for this one time, you are training this person for the future. If you can get them to trained and used to helping, they might be able to help you every week or two.

Lastly, give gratitude even when you think your family should feel obligated to help. Of course they should but let’s be realistic. Our practical goal is to get them to help more than they have been. Saying thank you and giving words of appreciation go a long way to reinforce good behavior. And if that doesn’t work, you can always say, “If you don’t have time to help, then you are going to have to pay to hire someone to help me.” That will get their attention.

Have a kind and respectful day.

My New Quality-of-Life Statement to Attach to My Advance Directive

The goal of writing a quality-of-life statement is to have it express your personal preferences and to have it sound like you. One of the problems with many of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard. I encourage you to use the categories I have listed below to express what you would want people to know about you if you were too sick to speak for yourself. You can use some of my language from my document below if you would like but my goal is for you to make it personal and meaningful to you. You will know you have gotten it right if people say to you, “Yes, this is sounds like what he/she would say.” By making it feel personal, you will help your family/friends feel more confident that they are truly honoring your wishes.

Sections of QOL Statement to Consider Including in Your Directive:
? Types of illnesses where this advance directive would apply.
? What is important to me?
? What conditions would I find reprehensible to live with long term?
? CPR, ventilator and feeding tube preferences.
? Reassurances for the decision maker.
? What is a good death in my opinion?
? What I want the doctors know about honoring my religious/cultural beliefs both while I am sick and/or dying?

Here is my new quality-of-life or meaningful recovery statement. My wishes haven’t changed but how I am saying it is much more complete. Feel free to take any part of it you would like. Use the basic headings and then make it personal and meaningful for you. I would recommend attaching it as an addendum to a basic advance directive form that works in your state.

Advance Healthcare Directive for Viki Kind – dated 11/1/2012

Types of illnesses where this advance directive would apply whether I am terminal or not terminal.

I can never list every type of disease that might make me begin to lose my mental capacity but the list might include, but not be limited to: all types of dementias, stroke, brain injury, mental illness, anoxic event, etc. I don’t have to be completely out of it like being in a coma, persistent vegetative state, or minimally conscious state for this document to go into affect. And I don’t have to be terminal. The point is that I don’t want to have my life prolonged/sustained if my brain no longer works well enough to enjoy what is important to me.

What is important to me? (The loss of any of these might be enough for my decision maker to implement my wishes documented in this advance directive.)

To make a difference in the world.

To be able to communicate with those I love.

To receive the joy that comes from personal relationships.

To have some independence.

To be able to give love, not just receive people’s kindness.

To not be a burden on my family/friends – financially, emotionally or physically.

To have a good death as defined by me (see below).

What conditions would I find reprehensible to live with long term? (Please give me the chance to recover if recovery is possible, but if I am not recovering to a level of functioning that I would think is worthwhile, whether terminal or not, then choose comfort care and hospice which I understand will lead to my death.)

All of the following conditions do not have to be present at the same time for the decision to be made to allow me to die from my illness/injury. Any one of these conditions may be sufficient enough to change my course of treatment from prolonging my life to comfort care and allowing a natural death.

This list of “Conditions I would not want to live with” includes but is not limited to:

Not recognizing my loved ones.

Not being able to communicate by voice, computer or sign language.

Wandering around aimlessly.

Suffering that isn’t necessarily pain related.

Significant pain that can not be controlled.

Significant pain that requires so much medicine that I am sleeping all the time.

Having to live in a skilled nursing facility or sub-acute facility permanently with my cognitive impairment. Nursing homes create such sadness in me every time have I visited or have stayed overnight with a loved one. I am too empathetic and take in people’s suffering too easily to be in that environment. It would destroy me long term. A short-term stay in a SNF/rehab/sub-acute is okay if I can recover to a life that I would consider worth living. (I understand that with certain types of traumatic brain injuries, they take a longer period of time to evaluate whether or not recovery is possible.) But if it looks like I am not recovering, then no thank you.

Okay, now the CPR, ventilator and feeding tube conversation.

My overall guideline is that if CPR, ventilator support or a feeding tube/TPN can return me to what I would consider to be a meaningful existence, (what is important to me), then please give me CPR, ventilator support and/or a feeding tube/TPN. But there has to be value in these medical options and any other medical treatment choices that are being considered. Don’t do things, including but not limited to, antibiotics, etc., that are just to sustain my poor condition.

I am not opposed to living with a feeding tube/TPN if it gives me many years of being able to enjoy what is important to me. But if the feeding tube/TPN is just to sustain my miserable condition, (what I would consider reprehensible) then don’t put it in or give me feedings through it; and please take the feeding tube out if it is already in. (Okay, if I am on hospice and the feeding tube gives you access for administering the pain and suffering meds I need, then you can leave it in. But don’t put food or additional liquids in it.) The feeding tube, like all medical decisions, needs to create value in my life, not just sustain my life.

If I am still healthy and can still experience lots of the things that are important to me, then give me CPR. But as my health declines and CPR becomes less statistically successful, then make me a DNR. Just like many doctors, I don’t want to die by CPR. I want to die peacefully without life-prolonging medical interventions. (Doctor, please ask yourself the surprise question: Would I be surprised if Viki died during this hospitalization or died in the next 6 months? If the answer is “No, I wouldn’t be surprised,” then talk to my decision maker about end-of-life choices, including putting me on hospice.)

Reassurances for the decision maker

You are allowed to make the best decisions you can based on the circumstances and what you know at the time. You do not need to know for certain or absolutely that you have all the answers. The decision doesn’t have to be perfect. Use your heart and your head. I trust you to do the best you can. (Ed, you don’t have to go into super-perfectionist mode.)

I believe love does not obligate a person to sacrifice themselves to be the caregiver for another. The damage done to the caregiver, emotionally, physically and mentally is too costly. I do not expect someone to give up their mental, emotional and physical health for me. Look at the MetLife studies. Caregiving sucks. And I love my decision maker and alternates too much to impose such a burden on them.

(Ed, if you need some time to make peace with what has happened, then you can take the time you need. I don’t want the decision to feel rushed or uninformed, which would cause you a lifetime of regret.)

For you doctor, your role is to give my decision maker as much information as you can so he/she can make an informed decision. I encourage you to share your wisdom, guidance and experience but ultimately, it is my decision as expressed through my decision maker and this document. Remember, this document is an act of autonomy and should not be ignored by my decision maker/s, other family members, doctors or worst case, the courts. (I will definitely come back and haunt a judge who isn’t respecting my wishes.)

What is a good death in my opinion?

I would prefer to die at home but I realize that sometimes, a person needs to die somewhere else so I accept that. I would like to have my family/friends with me which includes and is limited to those I interact with on a regular basis. Those family/friends who have chosen to not be in my life while I was living should certainly not be there as I am dying. Because I like control over my life, I would like to be able to clean up my desk and to get my financial information updated. I would like to be able to write love letters, record messages and to say my goodbyes. (I will do my Go Wish Cards and leave a copy for my family.)

I would like to die with reasonable pain control. For the days leading up to the death, I would be willing to tolerate a certain amount of pain if that allowed me to have meaningful time with family/friends. But at the end, there had better be no pain and definitely, no air hunger. (That doesn’t mean ventilator support; it means manage my air hunger with medications.)

And you better not be force feeding me by mouth, by IV or by tube as that would increase my suffering. (And that includes you at the skilled nursing facility, sub-acute facility or other care community if I happen to be dying there. I know you have your regulations but I also know you can’t assault someone with food if they have said no when they had capacity.)

That’s it for now.

Viki Kind ________________________________

Date: 11/1/12

Kindness Reminders Idea from Hayes Rowan – Sewing Bee to Make Pillows for Seniors

I have been sending out Kindness Reminders to many people who want to make sure that they reach out to show their love to a person who lives far away, a senior in a care community, or someone who just needs a little tender, loving care. If you would like to sign up for these reminders, sign up at the top right of my blog at www.KindEthics.com .

I was pleased that Hayes Rowan wrote to me with a wonderful idea for how we can show love and comfort to those who might need a little support. Here is what he wrote:

Here is one way to build bridges between our neighborhoods & nursing homes, & improve the quality of lives in both. More than pillows, the hope is: with more neighbors interacting with residents – the more conditions in the homes will improve.

Here goes: Enlist folks (scout troops, church groups, librarians adept with needlepoint hoops) to have sewing bees with residents, and make pillows. Old fashioned sewing bees – a time to listen, a time to care, someday, somewhere.

Pillows have that way of easing the aches & pains of immobility – lumbar pillows, neck pillows, u-shaped seat-cushion pillows. These days I always use a special one, globe-shaped and loosely filled, to cradle a book or support a sewing project – eases strain all around. (Bought it second-hand for a dollar – that works too.) (I use, to count ’em, seven pillows* for the better night’s rest, as the hips & back & mood can attest. They sure beat sleepin’ pills, that leave one all groggy & soggy the next day, (Calms Forte the most notable exception.)

So: sewing bees in the nursing home dining rooms, fortnightly – what say?
(*best fabrics for cases are satiny-silky-poly to touch. The more frictive type (flannel, corduroy ..) resist adjustment under blankets’ weight.)

Do let us know if some of you miraculously bring this from Idea to Actuality and write to hayesrowan@gmail.com

Have a kind and respectful day.

Mary Ellen Mannix – Protecting Newborns from the Most Common Birth Defects on Dec. 1st

Join me as I interview Mary Ellen Mannix, author, teacher, restorative practices educator & facilitator, and nationally recognized patient safety advocate. December 1st at 11AM PST/2PM EST http://www.blogtalkradio.com/kindethics/2011/12/01/mary-ellen-mannix–the-james-project–protecting-newborns

Communication between adults involved in any child’s life must be of high quality to benefit the child. Think parent-teacher relationships, divorced parents, intact family communication etc. When a child is in the middle of a healthcare crisis that communication can be lifesaving…or life threatening.

Today Mary Ellen is working with her state senator to ensure that all Pennsylvania newborns receive appropriate screening for the most common birth defect – SB 1202 The James Mannix Bill. www.jamessproject.com

James’s Project is a community based organization focused on improving communication in healthcare with the goal of saving children’s lives and clinician’s livelihoods. Communication strategies has an impact on our infant mortality rate. We want to improve it.

James’s Project works on three levels to save other children and families from the losses James and his clinicians and families endured.
–Proactive – on sight, online, and phone education and awareness programs to help parents and caregivers prepare and learn the best practices to safely navigate their child through the healthcare system. There is information that parents can get that will help them most successfully advocate for their child – as well as themselves, so treatment decisions are truly family centered.
–Active – healthcare coaching & bedside advocacy (which can be bedside or simply by phone) to assist & empower parents who have a hospitalized or child in crisis and feel communication with care providers is not as good as it should be.
–Reactive – medication and conciliatory services if and when there is an outcome that the patient and family have questions about.

Any parent, caregiver, friend or clinician can reach out to JP by email or phone to discuss their needs and create a plan to help their specific need.

JP is fortunate to have professionals in the fields of medicine, law, social work, mediation and patient safety who share their knowledge, expertise and connections to help find answers.
JP is just beginning but growing rapidly. For those in the Greater Philadelphia are there are several Parent Education presentations I will be giving this Fall.

For others anywhere else in the United States (and even the world) we are about to announce several webinar presentations thanks to a grant from the Cautious Patient Foundation.

Every pregnant mom and dad knows what LaMaze is – a wonderful form of childbirth that changed the landscape of labor and delivery in the late 20th century. James’s Project is taking it a step further and providing the education parents need to be fully engaged partners in their child’s healthcare for the 21st century.

Her book, Split the Baby is available at http://www.amazon.com/Split-Baby-Mary-Ellen-Mannix/dp/0557132665

Mary Ellen Mannix is available for: Keynotes, Webinars, Highly engaging workshops and education for professionals and parents, Mediation via Restorative Practice methodologies, Family Group Conferencing, Family Group Decision Making, Healing & Growth Conferences in Healthcare, Speakers Bureau, Support

Mary Ellen Mannix is a mother of 5 children (ranging in age from 7 years to 21 years old), author, teacher, restorative practices educator & facilitator, and nationally recognized patient safety advocate. After the tragic death of her fourth child she began learning why things go wrong in healthcare and how we can all make it safer. She has served as a substitute on a Patient Safety Advisory Committee for The Joint Commission, advisory board member for The Newborn Coalition, served on hospital patient safety committees, led clinical education such as for Clinical Pharmacology with HRSA, graduate nursing students at the University of Pennsylvania, and served as the consumer panelist and co-author of The American Academy of Otolaryngology- Head & Neck Surgery’s Tonsillectomy in Children Guideline. Mary Ellen has also presented at The Quality Colloquium at Harvard, The International Restorative Practices Conference and The Pennsylvania Patient Safety Authority Advisory Board Meeting. Mary Ellen was also selected as one of 50 Patient Activists for The Institute for Healthcare Improvement. She also received a grant from The Cautious Patient Foundation to engage more parents & patients to become educated and empowered advocates for their children in healthcare.

Have a kind and respectful day.

Families invited to Free Webinar and Live Event – November 8 – Free CEU for CCMC, NURSE AND SOCIAL WORK

Free CEU Seminar & Networking Reception
Empowering Caregivers of Dementia Patients on Tuesday, November 08, 2011
Viki Kind – Author of The Caregiver’s Path to Compassionate Decision Making – Making Choices for Those Who Can’t
5:30 p.m. – 7:00 p.m. EST

or Join via Webinar
RSVP Today at SeniorBridge.com/Seminar – Program Starts at 6:00 p.m. EST

Join Us In-Person at SeniorBridge
845 Third Avenue, 7th Floor
New York, NY 10022
Wine & Appetizer Reception Starts at 5:30 p.m.

Adults age 85+ are the fastest growing segment of our population – and half of them have Alzheimer’s. This seminar
will help professionals and families struggling to make decisions for those without capacity develop a pathway,
framework and tools for making thoughtful, ethical decisions. These tools are designed to be tailored to individual levels of incapacity and situations and to give voice to those who can’t speak for themselves. Respect and compassion will be the core values of this decision making process.

CCMC, NURSE AND SOCIAL WORK CONTINUING EDUCATION CREDITS PROVIDED BY SENIORBRIDGE*
Nurse contact hours pending by State of Florida Nursing Board for RN, ARNP, CNS, LPN. Social Work credits
pending by State of Florida Social Work Board for LCSW, LMFT, LMHC.
CCMC credits pending by the Commission for Case Manager Certification.
*Professionals should confirm acceptance of CCMC & Florida State approved CEUs with their licensing board.
For more information, email webinars@SeniorBridge.com or call 212-994-6153

Have a kind and respectful day.

Join me at the California Women Business Owners meeting in Woodland Hills, CA on Oct. 10 at 6PM

Join me at the California Women Business Owners meeting in Woodland Hills, CA on Oct. 10 at 6PM.
Maggiano’s Little Italy
6100 Topanga Canyon Boulevard, #1330
Woodland Hills, CA 91367
Phone: 818.887.3777

California Women Business Owners is a non profit organization that serves women business owners and professionals in the San Fernando Valley and greater Los Angeles area. California Women Business Owners was founded by four women in 1981 to help find answers to the following:

How to be successful as an entrepreneur.
Where to go for help.
How to establish beneficial contacts with a variety of professional business people.
How to find helpful information and supportive business colleagues.

CWBO Objectives

To encourage business ownership by women.
To be supportive of women business owners.
To promote economic stability in businesses owned and operated by women.
To share information of interest to women business owners.
To support legislation at the local, state and federal levels which will benefit women business owners.

CWBO meets the second Monday of the month to enjoy dinner, networking, and a speaker on topics of interest to women entrepreneurs. We share referrals, leads and the benefits of business ownership and support each other in our professional endeavors. We are women business owners in a women’s group dedicated to supporting our business colleagues in meeting our personal and professional objectives.

California Women Business Owners. cwbo.org
Los Angeles
P.O. Box 570514
Tarzana, CA 91357
818-773-1976
info@cwbo.org

Serving Woodland Hills, Sherman Oaks, Westlake Village, Calabasas, Studio City and Toluca Lake, Burbank Glendale, Encino and all the surrounding communities in the greater Los Angeles area.

Join me at the Texas NASW – National Association Of Social Workers on Oct. 8

Join me at the Texas NASW – National Association Of Social Workers on Oct. 8. I will be speaking at 2:15. http://www.naswtx.org

Founded in 1957 the National Association of Social Workers (NASW) is the largest organization of professional social workers in the world, with over 155,000 members in 55 chapters. The Texas Chapter, with about 5,700 members, is the major professional social work organization in the state. NASW is committed to advancing professional social work practice and the profession; and to promoting human rights, social and economic justice, and unimpeded access to services for everyone. Its members work in a broad range of settings including hospitals and other health care settings, community agencies, government, academia, business, nursing homes, schools, and private practice.

The Chapter office is located at 810 W. 11th Street, Austin, Texas 78701-2010. The staff is available to respond to member inquiries regarding social work practice, legislative and social policy issues, continuing education, licensing issues, and other informational requests.

The Chapter has numerous branches, committees and other leadership opportunities that involve members throughout the state, and better serve the social work community. These entities work on professional, social policy, and legislative issues, sponsor conferences, and provide a source of networking for members.

NASW’s goals include improving the quality of life and ensuring that the same rights and opportunities
are enjoyed by all. In addition, NASW strives to:
• Advance the quality of social work practice, improve the knowledge base required for
practice, and promote professional development.
• Promote the strength, unity, and recognition of the social work profession and the use of
standards to protect the consumer.
• Propose and promote sound public policies and programs aimed at meeting human needs
and improving quality of life.

Have a kind and respectful day.

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