Category Archives: end of life

The “Battle of the Q’s” PART ONE

Emma's Battle of the Q's

 Recognize three new acronyms: NED; MBC; + AND?

It’s easy to be an armchair quarterback, and intellectualize QUALITY of life vs QUANTITY of life until an accident or a terminal disease catapults you to the business end of a buzz saw. Don’t become complacent like I did.

I had STAGE IIIA breast cancer in 2004, after multiple surgeries, chemo and radiation. I was anxious before every six-month checkup, and after five years, the annual visits. What a relief to be told: “No Evidence of Disease (NED).” I took NED for granted. Excruciating headaches in late 2015 led to a diagnostic cervical CT scan, which identified hairline fractures in my cervical spine. A second CT scan, plus a deep needle biopsy of my Iliac crest, verified that I’d leapt over STAGE IIIB—and landed in STAGE IV cancer, which is where the bus stops. Totally blindsided, NED was replaced with a new acronym: Metastatic Breast Cancer (MBC).

Treatment plan: Ten doses of cervical radiation in December; six months of wearing hard and soft neck collars 24/7; daily Femara pills, and a monthly injection of Exgeva to strengthen my bones. June CT scan–no new tumors. While intermittent bone pain in my legs and ongoing fatigue punctuate my daily activities, now’s the time to reinforce my End of Life (EOL) discussions, i.e., My Exit Strategy that I’d designed with my website in 2013. Research on bone metastasis shows a five to ten year life expectancy, so it’s a perfect time to rev up this conversation, again.

If you were buying a car, you’d check out the dealership’s reputation, right? Why not do the same, and investigate your future EOL needs like geographically desirable hospice facilities, caskets, cemetery plots, funeral homes or cremation services, now, before you need it?

I remind my adult children that just as the citizens of Chicago were told to vote early and often, when my health goes downhill, they should use the same approach with the Hospice I have chosen. Start early and ask often: “Is my Mom ready to go into hospice yet?” Every patient will decline, and the doctors will be asked: Would you be surprised if she died in the next six months? I don’t want to be cheated out of one day! Give me hospice!

Here’s the third acronym: Allow Natural Death (AND). My directions are simple and clear. Be prepared for the time when my cancer becomes aggressive, or stops responding to treatment. If a medical crisis develops, my condition could deteriorate very quickly. Don’t panic. Keep my POLST* and Advance Directives visible. Focus on comfort care—only give me the best QUALITY of life possible. No heroics, last-ditch surgeries or attempts to prolong my life—which in reality just prolongs a patient’s suffering. DO NOT send me to the ER or the ICU. Keep me at home. Re-read my Directives. Review our state guidelines for paramedics. If I can’t breathe, don’t call 911. Never allow anyone to crack my ribs, or surgically open my airways. Stay calm. My goals have changed—I’m looking forward to my eternal life. As soon as I am Absent from the body, I’ll be present with the Lord. I’ll get there sooner if you remember AND –Allow Natural Death.

POLST*    Physician Ordered Life Sustaining Treatment. States use different terms. Find yours on this map www.polst.org

The linchpin to End of Life (EOL) planning is to stay in control. Make your personal Exit Strategy air tight. Clarify your wishes now, and keep talking about it until your family understands the blueprint you’ve outlined for them. Research demonstrates that when the family is at peace with your advance decisions, they can concentrate on mourning and remembering your legacy—which keeps you alive in their hearts and minds.

Coming soon:  PART TWO   Building your own Quality VS Quantity charts.

 

 

 

before you go

“Before you go…” BLOG posts focus on critical End of Life Issues. Request custom-designed workshops for your church or community group. Click here.

True Confessions: I AM a “NAGGER” *

Elizabeth Hurlow-Hannah is nothing less than ONE BIG NAG and I will be indebted to her for being such for the rest of my life.

The truth of the matter is that Elizabeth has been a very good and close friend of my wife and me for almost twenty years now. But in the last several years, she has been reminding me that I should put my will, health advance directive and other end-of-life papers in order.  When she became aware that I was procrastinating on getting this matter accomplished, she became a bit more forceful in reminding me how important this matter is. To get this dear friend off my back, my wife and I went to an elder-law attorney about a year ago and had the appropriate papers drawn up. We both indicated in our advance health directives that we wanted no extraordinary resuscitation measures to be taken in case of a health crisis, including feeding tubes. Continue reading

Give Grief Space to Breathe

Guest Blogger: Kim Adams, Certified End of Life and Grief Coach

Grief is the natural, common response to a loss. And loss is a human experience. Therefore, we each experience loss in one form or another. We tend to most often think of grief after the death of a loved one. However, grief occurs along the journey — along the journey of life (divorce, loss of friendships, job loss, etc.) and along the caregiver journey.  We can experience the anticipation of loss — grief that our loved one is no longer the person they once were with diminished physical abilities and/or diminished mental capabilities especially with dementia or Alzheimer’s disease. And in addition, the loss of our own identity, including the the loss we feel as our role of caregiver will ultimately change. Continue reading

Death & Dying, Loss & Grief Brought to You by THE DEATH CHICKS

The Death Chicks? Are you kidding me? How outrageous and fun, melding the disparate concepts, “Death” and “Chicks” into a weekly show on Google Hangouts On Air (HOA).

Thanks to the internet, two professionals working in the death industry, Patty Burgess/Philadelphia connected with Myste Lyn/ Canada. Getting acquainted through Skype, they discovered they were “on the same wave length,” and shared a similar sense of humor. Their conversations were always punctuated with laughter, a key element to releasing endorphins in the brains. As they explored the spectrum of end of life issues to discuss in a weekly show, they knew laughter was a key component, because it puts people at ease, and lessens their fears. Patty said: “Our individual hospice training and personal coaching perspectives created our basic philosophy: you can’t enjoy life to the fullest unless you stop being afraid of dying.” Continue reading

Learn How To…Talk To Your Doctor…and never hear the ugly words ‘Death Panels’ again!

Just in case you forgot how “Death Panels” became The LIE of the YEAR in 2009, click on this link, http://www.politifact.com/truth-o-meter/article/2014/dec/15/look-back-politifacts-lie-year/   — skip down to the “PolitiFacts LIE of the year for 2009.

How many people died in the past six years, without the benefit of an “end of life” conversation with their physician(s)? Is this on Sarah Palin’s conscience? Continue reading

5 Tips When Making the CPR/DNR Decision  

This guest post is provided by Bioethicist, Viki Kind.

CPR or cardiopulmonary resuscitation used to be very simple to understand. Cardio stands for heart, pulmonary stands for lungs and resuscitation means to revive from death. When a patient died, someone would push on the person’s chest to try to restart the heart while giving mouth-to-mouth resuscitation to help the person breathe. Over time, CPR has become more complex as healthcare professionals have discovered advanced ways to try to bring the person back to life. What seemed like an easy question, “Does the person want CPR?” has turned into a more complicated decision.

What do you need to know to make a good decision? Continue reading

Thinking of Suicide? Know someone that has? Please read this: Open Letter to Sam…

Completing our “Snowbird” season, en route to our final Florida RV campground, we stopped at a USPS office to mail a package.  Another customer in line asked about my Stephen Ministry nametag. I explained that twenty years ago, I’d taken 50 hours of training to be a Christian caregiver. Now I’ve developed a website, www.yourexitstrategy.org to encourage families to start talking about their End of Life plans. I was blown away when he said, “I’ve already found the cheapest way to get rid of my body when I’m gone—I’m donating it to medical science.” Continue reading

How The Mesothelioma Center Can Help Someone With A Terminal Diagnosis of Mesothelioma  

The value of a good support team can’t be understated when facing a terminal diagnosis. A network of supportive family, friends and health care professionals is the greatest asset someone can have when coping with a terminal disease like mesothelioma cancer.

Mesothelioma is an incurable cancer caused by exposure to asbestos. The five-year survival rate is less than 10 percent, and mesothelioma life expectancy is between 12 to 21 months. However, advancements in treatment are helping people live longer and more comfortably with the disease, and rare cases do go into remission, but the vast majority diagnosed with mesothelioma will succumb to the cancer within three years. Continue reading