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Rev. Dr. Martha R. Jacobs

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Death And Taxes: Why We Need To Talk Openly About End-of-Life Care

Posted: 04/13/2012 2:29 pm

This coming Monday, April 16, is National Health Care Decisions Day. It was started to inspire, educate and empower the public and providers about the importance of advance care planning. I have written many times in this blog about the importance of people having advance directives. This is not a form of a "death panel," it is a way to empower those who may need to make health care decisions on your behalf, to do so in an educated manner.

When someone is in the hospital, it is already too late to begin to have a conversation about what someone's wishes are concerning how they want their body treated as they near the end of their life, or as they deal with a life-altering illness. While no one knows exactly how they will feel when something does happen, having had conversations with those who love you and who you love, will enable them to begin to understand what is important to you, what "living" and "life" mean for you. And since living and life mean different things for different people, it is all the more important to talk about it!

I also believe that God expects us to be good stewards of our bodies and our resources. We need to plan ahead and we need to ensure that we are not wasting resources, whether they be financial or medical. Completing an advance directive is being a good steward.

There are several websites below that can help you with these conversations, the conversation that no one wants to have, but everyone should have. Anyone over the age of 18 should have had these conversations, because the two women who sparked the advance directive movement -- Karen Ann Quinlan and Nancy Beth Cruzan -- were both in their 20s. While we my think that illness is not going to overtake us, chances are, it will. And we are living longer, with more chronic illnesses. You need to decide how you want to live your life with that chronic or debilitating illness.

While parents may think that their children are loving, compassionate people, scenes I have witnessed in the waiting room of an ER or ICU belie that. It is not that your children aren't loving, caring people, but when a parent is ill or dying, all of the sibling "stuff" that was there when they were young children, comes out again in full force. I have watched siblings push and shove each other and almost get into a fist fight over whether or not their mother would have wanted to be kept alive by a machine when she would not have any quality of life that was acceptable to her (based on what she had told one of her children).

When I do workshops with community groups about completing advance directives, I highly recommend that the family all come together, face to face, if possible, and begin to talk about what is important in life to each one of them. Yes, it is a hard conversation to have, and yes there will be tears, but there may also be some laughter and there will be love and there will be an opportunity for everyone to hear for themselves what the other's want in terms of being kept alive by machinery.

If you want everything done to keep you alive no matter what, that is fine -- just let people know that. If you don't want everything done to keep you alive if your quality of life will not be acceptable to you, then people need to know that too. If we learned nothing else from the Terri Schaivo case, it is that we need to make sure that all of those who love us know what our wishes are. The government is not stepping in to make decisions but they have passed legislation so that we can make our wishes known.

Benjamin Franklin did say it best in 1789: "'In this world nothing can be said to be certain, except death and taxes." So, in addition to preparing your tax return, take the time to prepare your advance directive. Below are several links to websites where you can easily download the form that is accepted in your state. As I said in a prior blog posting, the greatest gift you can give to your family, is letting them know what your wishes are regarding how you want your body treated as you near the end of your life.

 
 
 
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07:02 AM on 04/16/2012
Mom is 86, has AZ and is in a home....at $8k a month, so her end of life care is paid for. Dad just turned 89, now lives alone in the house that us 4 kid's and his wife of 65 yrs years lived in. He is heart broken over Mom being in a home, and that he, after working for the the U.S.P.S. for 30yrs, and saving money, and doing everything right, will pretty much be broke in 2.5 yrs. He had always thought they would leave the house & some $$$ to us 4 kids...we have all told him that we are not looking for anything from them except that they be around for as long as possible. Mom will probably be around for a few more years, even if she doesn't know most of us anymore, Dad, I'm afraid is going to pass soon, more from a broken heart, than anything else.
07:04 PM on 04/15/2012
My parents have both signed paperwork stating that if the worst happens they don't want heroic measures taken, and my sister and I share power of attorney in regards to that decision. Since my sister and BIL are currently living in London, that means that if something like that should happen, the decision would likely land in my lap first. I know it's not a pleasant decision to make, but I've discussed that with them as well as funeral arrangements-in fact, I recommended the town's funeral home to them, and they got a booklet where they filled out the information we'd need. It's a bit of a relief to know what they'd want and be able to follow that to the letter. If only more people weren't afraid to fact the inevitability of death and its aftermath and let their wishes be known and written down "just in case," then we wouldn't have disasters like the Terri Schiavo fight.
01:29 AM on 04/15/2012
Since 1979 I have worked in healthcare. Please read 'Physicians against HMO's...Making a Killing.' The goal of healthcare USED to be giving everyone options to prolong their life. Until 1979 when studies were begun on children born with Spina Bifida. If you were the poor parents of a child born with SB, you were given NO treatment options and your child lived to be the age of possibly two. If you met the criteria of the financial analyst, your child born with SB was given treatment options and lived until the age of over twenty. This does not just pertain to children now. Accountants, not Doctors, make decisions about life or death based on a formula of education, insurance, income. I understand that we do not want a loved one to live in pain as they would not want to live that way. However many went on to live productive lives, after insisting on treatment options, for as long as two decades or more.
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Claude Hosch
A single bracelet does not jingle
07:38 PM on 04/14/2012
S. R. Covey said: "Begin with the end in mind." Death should be included in our endgame strategy. We know its coming, and may be just one breath away from death. Discussing death not only makes our end of life wishes known, it adds value to each day: to our health, family, friends, our commitment, and those little things we laugh about.

My 11yr old grandson asked on Wed. why people make such a big deal of talking about death. My answer: they live life avoiding death. He understands that he will die when he is old, if lucky, and that he is suppose to.
05:30 PM on 04/14/2012
Great and very necessary article!
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12:17 PM on 04/14/2012
I think the churches have let people down in this country. So much unwillingness to look at death in the context of spirituality. People talk about believing in God and in heaven but so afraid of death. Why is that? If death is when we meet our maker then why are we afraid to meet the maker? One of the places where we should be having end of life care talks is in church. Why is that not happening?
09:49 PM on 04/13/2012
Obamacare has panel,of bureaucrats to make these decisons for you. Problem solved.
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falonia
Atheistic Socialist
04:08 AM on 04/14/2012
Nice try. Would you like to elaborate as I don't think you know what you are talking about. 'what are these decisions that the bureaucrats are going to make?
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12:12 PM on 04/14/2012
You really think people believe that old line?
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Damiano Iocovozzi MSN NP
Director, CEO, the Thomas Edwin Walls Foundation
09:31 PM on 04/13/2012
Nice article! Please mention the cost of medical futility or obstinacy at end of life for those who are past all cures, all remissions, all reprieves from advanced age or dementia. There are only 3 honest medical goals to achieve at end of life for this subset of people: doing no harm, advice and education about diagnoses and relief of symptoms. In the fee-for-service scheme in the USA, the expectations are enormous in cost and patient pain & sufering for no honest medical goal. Many providers order & treat as if they could restore health, but really make the most money at end of life & cause added pain & suffering in that subset of people with no honest medical goal in mind. Protect your loved ones by visiting our web page for more information about medical futility at end of life, biomedical ethics & the honest goals of medicine for the dying. Astute providers already know if a loved one will likely pass away after 6 months: knowledge & experience with classic disease processes, consistent weight loss, changes in lab values like albumin & pre-albumin levels & changes in body habitus. Even my first year nursing students know. Damiano iocovozzi, President & CEO, the Thomas Edwin Walls Foundation
http://www.soonerorlaterbook.com
GHarry
Kitty wrangler
08:46 PM on 04/13/2012
This article contains very good advice. I would just add that religious groups have managed to block "death with dignity" laws in many states, which would allow terminally ill people to choose to end their lives peacefully instead of suffering horribly for weeks or months while nature takes its course. That's disgraceful. Every state should have a death with dignity law. Even better, it should be part of the Constitution, for death claims us all sooner or later. It's simply ridiculous that in the 21st Century we still force many, many people to die horrible deaths each year because a small minority objects to giving them a peaceful way out.
06:58 PM on 04/15/2012
What's even more ridiculous is that we allow our PETS to have that kind of peaceful, dignified end we deny to our human loved ones! Why is it that we deny our human family members the right to die with dignity and peace instead of pain and suffering, yet when we're faced with that same kind of decision for our pets, we opt to relieve their suffering and give them the peace they deserve? I just don't get it.

As a volunteer firefighter/EMT, I can tell you that even DNR orders aren't safe; I've heard horror stories from my fellow firefighters about people having DNR orders, yet we don't know about it because the family members actually hide the DNR orders! Yes, they know that their loved one signed a DNR, yet they are selfish enough to hide the paperwork and deny their loved one his/her last request. Don't even get me started on the "the living dead" I see in the nursing homes and hospital who are either hooked up to machines and wires after conscious brain function has waved bye-bye or who are merely "existing" in bed because, as one of my buddies put it, "The band's playing, but the amps aren't plugged in."

Sorry, but if I end up trapped in bed, wearing a diaper, drooling all over myself, babbling incoherently, and not knowing my loved ones from Spike, for crying out loud PULL THE PLUG! Quality of life trumps quantity any day!
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golfvue3
It's all ball bearings these days.
08:27 PM on 04/13/2012
good article.

An extremely significant amount is spent on healthcare for people in their last 6 months of life. This is an area where much thought needs to be given.
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BOBinPS
Really?
07:09 PM on 04/13/2012
My mother had a DNR, and made her wishes known well before a sudden and final illness at 96. But, in the hospital, after talking to her physicians, and being of sound mind, she decided upon a series of useless imaging procedures and surgery. I believe her physicians were well intentioned, but hopelessly optimistic. Expressing your wishes and being willing to follow through are not the same. After 3 weeks of agony, she died. The problem is also a part of the medical community. I don't want to believe that her physician's motives were profit. I think most physicians have a problem communicating bad news. Especially with a patient with whom they have had a multi-year relationship. My mother was her physician's second patient in his practice. He is near retirement age. I gently urged hospice. I am medically trained. But if people are given hope, they will usually go for it. There was a chance that the aggressive intervention might have worked. About the same chance of her winning the lottery.
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12:18 PM on 04/14/2012
Actually there has been a lot of research on the subject and it's not just what you think. Physicians do have a problem communicating bad news. There are many books on the subject.
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johnb123
All I ask..just be reasonable....do things my way
06:52 PM on 04/13/2012
Years ago my parents told us, because they love us kids...and don't want to think of us fighting over anything they leave after they die, they'll be spending everything they have now. They won't be leaving us anything....but it's only out of love for you kids. . :)
02:44 PM on 04/15/2012
LOL! They had every right to do as they wished with their estate, but it's clear that you and your siblings were not a factor in that decision!
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06:06 PM on 04/13/2012
I am power of attorney for my mother and was for my father until he passed. Thank you for bringing this topic to discussion. It is a miserable position to be in. However, I can tell you the money grubbing elder care industry is a nightmare when trying to protect your parents wishes and dignity. Not only does it need to be discussed and documented, but your advocate needs to be a hard core advocate for you. . The industry makes so much money by warehousing most of these poor souls and has so little humanity they allow them to exist (not live) for years. I have been called names and degraded for nothing except minimizing the invasion by outsiders in our lives. If your loved ones are admitted to a catholic Hospital you should know they do not care what your wishes are, written or not the all knowing Pope has decreed life over everything including your dignity.
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Cecelia Nunn Haack
Art saves lives
05:57 PM on 04/13/2012
Well said and thank you. My sister and I are facing end-of-life issues with our mom and no matter what this is a difficult time in life.
09:07 PM on 04/13/2012
I am thinking of you now and hope the best for you and your sister. I have been there with both parents.
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Cecelia Nunn Haack
Art saves lives
12:17 AM on 04/14/2012
Thank you so very much.