Real World Health Care Blog

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.

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Categories: Access to Care

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Categories: Access to Care

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Categories: Access to Care

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Categories: Cost-Savings

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When Danielle Deines crossed the finish line of the Boston Marathon on April 15, she had no idea her unique medical training as Doctor of Osteopathic Medicine would make a real difference in the life-and-death events that would soon unfold. A 2012 graduate of the Edward Via College of Osteopathic Medicine … (read full article)

Heroes Needed: Apply Within

We’re taking a departure today from our coverage of what works in American health care to ask for your help. Patients want us to re-open our Breast Cancer Fund at HealthWell, but we can’t successfully do that until we identify several key companies or organizations to partner with us in … (read full article)

Categories: Cost-Savings

It Takes a Community for Effective Disease Prevention and Management

To help stem the tide and high cost of persisting disparities in U.S. health care, providers are leveraging Community Health Workers (CHWs) as critical players in improving health outcomes by successfully linking “vulnerable” patient populations to better care. Living in the communities where they work, CHWs understand what is meaningful … (read full article)

Categories: Access to Care

National Patient Safety Program Cuts Bloodstream Infections to Save Lives and Money

Central-line catheters are lifesavers. They’re used in hospitals to deliver therapy where needed and when needed for patients with a wide range of conditions.  Unfortunately, central line-associated bloodstream infections (CLABSIs) result in thousands of deaths each year and billions of dollars in added costs to the U.S. health care system, … (read full article)

Telehealth Opens Doors to Enhance Health Outcomes and Reduce Costs

Telehealth solutions are making significant inroads to reverse high health care expenditures and reduce noncompliance with prescription therapies – issues that especially impact those living with chronic disease. By engaging patients in health education through classes, patient portals, real-time patient-provider consultations, online discussion forums and more, telehealth strategies empower providers … (read full article)

Categories: Cost-Savings

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 … (read full article)

Categories: Access to Care

Meditation Found to Cut Risk in Half of Death, Heart Attack, or Stroke in African Americans

Here’s an idea that every person alive can do, costs nothing, and takes as little as 20 minutes a day: Meditate. A recent peer reviewed, published study shows why: “Meditation is usually thought of as a practice of healthy, well-off white people and Asians. But newly published research suggests it … (read full article)

Filling the Financial Gap When Health Insurance Isn’t Enough

You can’t escape the headlines: rising expenses and high unemployment. And even for the employed, a sharp reduction in health benefits – coupled with a steep increase in out-of-pocket costs, including deductibles, copayments and coinsurance – is making access to life-saving and life-sustaining therapies out of reach for many Americans. … (read full article)

Categories: Cost-Savings

Hospitals, Physicians Embrace Strategies To Reduce Cost of “Frequent Flyer” ER Visits

Pardee Memorial Hospital in Hendersonville, N.C., shaved nearly $405,000 from its Emergency Room (ER) expenses over a one-year period thanks to an integrated program that its founder calls a “patient-centered medical home on steroids.” The program, Bridges to Health, helped its uninsured participants reduce their ER visits from an average … (read full article)

Categories: Cost-Savings

Self-Service Kiosks Provide Innovative Path to Testing and Connection to Providers

The recent proliferation of affordable do-it-yourself consumer tools is one way patients are now empowered to take control of their health through prevention and wellness strategies. One successful example is SoloHealth Station – a free, self-service kiosk offering comprehensive vision, blood pressure, weight and body mass index screenings. Currently located … (read full article)

Categories: Access to Care

Walgreens Unveils Solutions to Boost Medication Adherence

How can health professionals enable their patients to take medications more consistently as prescribed? Personalized counseling from pharmacists and prescription refill reminders are two effective ways now shown to fuel better drug adherence, according to research from Walgreens presented March 15 at the World Congress Summit in Philadelphia. Walgreens’ community pharmacy programs … (read full article)

Making Costly – and Deadly – Medical Errors and Unnecessary Hospital Visits Something Only Grandparents Can Remember

“She died from a breakdown in the system. She died from a breakdown in communications.” These heartbreaking words, from patient safety advocate Sorrel King about the loss of her young daughter Josie King, are words that no one should ever have to say or hear. Her 10-year commitment to end … (read full article)

Taking the Digital Leap Saves Community $20+ Million in Preventable Health Care Costs

Hospitalizations dropped by almost 3,000 people over a two-year period in Cuyahoga County, Ohio, thanks to a variety of quality changes and investments in electronic health records (EHR). This tool collects and shares critical health information about individual patients and populations across health care settings. The nearly 11 percent drop … (read full article)

Categories: Cost-Savings

Express Scripts Provides Roadmap to Improve Health Care, Reduce Costs and Streamline Delivery of the Medicine Patients Need

You might be in a “utilization management program” and not know what that means or why it matters to your health. Offered by a variety of employers across industries, utilization management programs are designed to help patients evaluate their health care options and make decisions about the type of services they receive. … (read full article)

Categories: Access to Care

Will Consolidation Change Health Care for the Better?

The Cleveland Clinic believes it will, especially when it produces better patient outcomes and improves care across a spectrum of services. As part of the recent wave of hospital mergers and acquisitions designed to improve quality and lower costs, Cleveland Clinic recently entered a long-term strategic alliance with Community Health … (read full article)

Why Aren’t Patients Taking Their Medication?

It’s a question with which many in the health care community grapple. In some cases, it’s a matter of affordability, as the high cost of certain therapies makes it difficult to pay for needed drugs AND to pay for essentials like rent or the mortgage, utilities and food. Even with … (read full article)

Categories: Cost-Savings

Three Pillars of Health Care Success: Cost Savings, Prevention/Patient-Centered Care, and Access to Care

Welcome to www.RealWorldHealthCare.org, a blog dedicated to showing what’s working to  improve health care in the U.S. Why are we talking about improving access to good medical care? Rising costs could bankrupt us, and most people need to do a better job of preventing illness. But digging deeper, you may … (read full article)

Categories: General