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Taking Charge at the End of Your Life

Tim Prosch is author of AARP’s The Other Talk: A Guide to Talking with Your Adult Children About the Rest of Your Life, a book that helps parents and their children create a partnership to plan for the years to come, guiding them through important conversations and decisions about finances, medical care, and day-to-day living—before a crisis happens.

Tim Prosch

Tim Prosch

What can happen if you put off your end-of-life health care decisions until “the time is right?”

The Terri Schiavo case, which culminated in 2005, can put the answer to this question in stark relief.

Fifteen years earlier, Terri had collapsed at home, suffered severe brain damage and was put on a feeding tube to keep her alive. For the next decade and a half, she was yanked back and forth in a virulent tug-of-war between her husband and her parents about how she would want to be treated. Ultimately the courts got involved, pulling her off her feeding tube for 3 days in 2001, again for 6 days in 2003, and finally for 13 days in 2005, when she finally expired.

All of this drama and heartache could have been avoided if her wishes had been put in writing and had been thoroughly discussed by all interested parties.

While none of us will ever know what Terri wanted done at the end of her life, it is safe to say that her on-again, off-again existence and her increasingly toxic family dynamic are not what she or anyone else would wish for.

 

How can you avoid Terri’s fate? 

To begin with, it’s important that you understand that health care at your end of life will be a family affair, not just a personal decision. In most cases, it is not about you personally taking charge. It is about you preparing and empowering your family to take charge as you approach that final stage.

The-Other-TalkThe reason for this collaborative approach is that it is highly likely that you won’t be physically, emotionally, or mentally able to direct the final proceedings. Collaboration addresses the challenge for someone acting on your behalf to weigh the options and make decisions and to articulate what should be done in a way that reflects your thoughts about the end of your life.

As a result, it is critical that you start these conversations now while you are mentally sharp. Quite simply, the longer you wait, the less effective these discussions with your family will be, due to the natural deterioration of the aging brain.

In preparing for the end game discussion, you’ll want to take steps in two critical areas: guiding principles and parameters for medical treatment.

 

Step 1. Establish Your Guiding Principles

The first step in making your family confident and empowered in taking charge when the time comes is for you to confront and define what “being alive” means to you as you near the end.

For some people, it is fighting for every last breath. “Even one more day would be important to me. I would do everything I could to hold on to life.”

For others, it is living intensely, yet comfortably, in the time remaining. “I would rather be able to do what I want, to be with my kids, to enjoy life, even if it’s for a shorter time.”

Of course, neither one is the better approach because it is such a personal choice. But if you start now to build a clear understanding of your preferences with your family and your doctors, you can dramatically increase your odds of getting what you want.

 

Step 2. Set Parameters for Your Medical Treatment 

Step 2 in taking charge of your life (versus abdicating it to the medical community) is to put your preferences in writing. Equally important is to distribute and discuss your wishes with your family members and your doctors to ensure that your goals are clearly understood.

An effective and relatively inexpensive way to accomplish this is to consult with your legal advisor, then draw up a health care power of attorney. This document establishes your designated agent who will make health care decisions for you if you are not able to do so.

If you are in the “do not prolong life at any cost” camp, you will also want to explore two health care directives: the living will and the do-not-resuscitate (DNR) order:

  1. The living will establishes that you do not want your death to be artificially postponed. It states that if your attending physician determines that you have an incurable injury, disease or illness, procedures that only prolong the dying process should be withheld and the medical focus should shift to comfort care. This document must be signed by two witnesses who will not benefit from your death.
  2. The do-not-resuscitate (DNR) order is different from the health care power of attorney and the living will in that neither your health care agent nor you can prepare it. Rather, it is a written order signed by your physician that instructs other health care providers not to attempt CPR if your heart has stopped beating and if you have stopped breathing during cardiac or respiratory arrest.

Once you have shared your “what being alive means to me” documents (the health care power of attorney and, if relevant, the living will and the DNR order) and thoroughly discussed them with family and doctors, you all should acknowledge the possibility of revisions. Every time your health status changes in some significant way, you should have another discussion to clarify your views and expectations.

It’s okay for you to move the goalposts on issues pertaining to the end of your life. You just need to make certain that the people in your world know that you moved them.

Do you have a living will or DNR? What did you learn through the process that you’d like for others to know?

Click here to learn more about The Other Talk and here to hear an interview with the author from AARP.

Making Life Easier for Patients and Loved Ones: Meet MyHealthTeams

Talk to anyone impacted by a chronic condition – autism, multiple sclerosis, breast cancer – whatever disease or condition, they will all tell you it’s not easy. It’s not easy finding the support that best suits them. It’s not easy finding providers. It’s not easy period. At MyHealthTeams we create social networks for chronic condition communities. We believe that when you or a loved one are diagnosed with a disease, it should be easy to connect with people just like you, who can share their daily experiences, and help you discover the best people around to help you.

Since we founded MyHealthTeams in 2010, we’ve launched three social networks – MyAutismTeam, for parents of children with autism; MyBCTeam, for women facing breast cancer; and MyMSTeam, for those living with multiple sclerosis.

Each of the social networks we’ve built has been fully embraced by the communities we’ve addressed. Our flagship community, MyAutismTeam, has in less then 24 months, grown from 30 parents to more than 40,000 parents across the US.

Emily Ybarra, mother of a 4-year old boy with autism, was having difficulty finding a dentist capable of handling her child’s sensory processing disorder – a common challenge associated with autism.  After joining MyAutismTeam she connected with other parents near her in Orem, Utah and asked if anyone could recommend a dentist capable of “working with a special-needs child who recoils from human contact.”

Within a few days she had a referral to the autism-friendly dentist she still uses today.  More important, she had established friendships with many other parents of children on the autism spectrum.  Parents nearby reached out to her, but so did parents from all across the country who could empathize with the challenges of having a child with sensory processing disorder.   She wasn’t alone and she didn’t need to reinvent the wheel.

MyBCTeam already has roughly 4,000 women on the site since our launch in September 2012 and the majority of those women are actively engaged on the site or the MyBCTeam mobile apps every month.

This past week we launched MyMSTeam and as of this writing we are already closing in on 500 registered members.

Users of all three of these social networks share recommendations of local providers, openly discuss daily triumphs and issues, share tips and advice, and gain access to local services.  Thousands of posts, comments and updates are shared every day across these three sites and that number climbs each week as the networks expand.

Three major drivers behind the growth of our sites:

  1. People crave connection with other people just like them – they just need a safe and reliable environment to do so.
  2. The simplicity of our technology – our communities reflect aspects of social networks that our users are already familiar with (i.e. Facebook, Twitter, etc.) which provides for high user engagement.
  3. The rapid word-of-mouth among these communities.

One in two Americans live with a chronic condition[i] and they are seeking support from not only their medical providers, but also from people like them. In fact, for women with breast cancer, recent studies show that having strong social support improves outcomes[ii]. Sharing with people who are in your shoes offers a sense of community that can’t be found elsewhere – these are people who know the language of your condition; they understand the daily frustrations and the small triumphs that can mean so much.

With The Affordable Care Act on the horizon, implementing and expanding wellness programs has taken on a new importance for companies.  Organizations are seeking resources that not only help improve the quality of life for their employees, but also help control health care spending. Social networks, like the ones created by MyHealthTeams, allow employers to offer unique resources to their employees allowing them to create the support networks they need to get through to the next day.

For more information on the social networks created by MyHealthTeams, visit http://www.myhealthteams.com.


[i]An Unhealthy America: The Economic Burden of Chronic Disease, Charting a New Course to Save Lives and Increase Productivity and Economic Growth, Milken Institute, By Ross DeVol and Armen Dedroussian, Oct 2007 (free download http://www.milkeninstitute.org/publications/publications.taf?function=detail&ID=38801018&cat=resrep)

[ii] Journal of Clinical Oncology, Social Networks, Social Support, and Survival After Breast Cancer Diagnosis, Candyce H. Kroenke, et al., March 1, 2006

Categories: Access to Care