dying the thing that no one wants to talk about (advance directives & living wills) @cnn

8/13/2019 Dying the Thing That No One Wants to Talk About (Advance Directives & Living Wills) @CNN

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(CNN) -- It's a situation no one wants to be in: staring at the sereneface of a loved one as doctors discuss ventilators, feeding tubes andEEG results, wondering whether this is what your mom or brother orspouse really would have wanted.

The heartbreaking story of 13-year-old Jahi McMath has made manyquestion what they would do in a similar situation.

Doctors declared Jahi brain-dead after a tonsillectomy in earlyDecember. A judge agreed, but the family battled to keep Jahi on aventilator. The eighth-grader has since been released from thehospital and moved to an undisclosed location, where the family'sattorney says she is "improving."

If you were Jahi, is that what you would want? Does your family knowthe answer to that question?

In one California study (PDF), 84% of the people surveyed said theirloved ones had a good idea of or knew their wishes exactly, yet only29% had ever had a serious, in-depth conversation about end-of-lifecare.

"It's awkward," said Paul Malley, president of Aging with Dignity."People think, 'I don't need to do that today.' There's that assumptionthat you only need to talk about end-of-life care if you're old and sick.These cases that have played out in the news show it's just theopposite."

The hardest conversation

Here are five things you need to do now:

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Dying: What no one wants to talk aboutBy Jacque Wilson, CNN

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Dr Sanjay Gupta on Jahi McMath

STORY HIGHLIGHTS

Identify a health care agent

who will speak for you whenyou are unable

Determine which life-savingand life-prolongingprocedures you want andwhich you don't

Write everything down todefuse any family argumentsduring a tough time

Make sure to think aboutwhat will make youcomfortable at the end ofyour life

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6 1/12/2014 4



Find someone to speak for you

The first thing you need to do is identify a health careagent, also called a proxy or surrogate. This is the personwho will speak for you and make decisions about yourhealth when you are no longer able to communicate.

This person should be someone you trust, who willunderstand and agree to your wishes. They should also,Malley says, be someone with a strong backbone whowon't be afraid to fight for you. And oftentimes, "it's not the

first person who comes to mind."

For instance, your spouse may not want the responsibilityof removing life support after an accident. Or your siblingmay disagree with your wish to return home if doctors sayfurther treatment will only prolong the inevitable.

"Anytime we're caring for a loved one, there is emotioninvolved," Malley said. "Sometimes it's helpful to have aperson who's a little bit removed."

Determine what you want -- and what you don't

If your heart stops, do you want medical providers to perform CPR? Ifyou cannot breathe on your own, do you want to be intubated? If you

cannot eat or drink, do you want to be fed and hydrated artificially?

Why brain-dead means really dead

Would you want treatment if you can no longer respond tocommands? Would you tolerate severe pain or nausea if the chanceof recovery was 80%? How about 20%? Do you want to donate yourorgans when you die?

Use this toolkit from the American Bar Association (PDF) to helpguide your wishes. Know that it's not possible to address everysituation, and many experts warn against making your mandates toobroad.

Write it down

Talking with your health care agent about your wishes is important,but it's also a good idea to put them in writing. That "takes theguessing game away" in the case of disagreements about your care,Malley says. "Ultimately, that written record becomes a gift to familyand loved ones."

The document in which you identify your health care agent is called aDurable Power of Attorney for Health Care, according to theAmerican Bar Association.

This is slightly different from a living will, which states only yourwishes about life-sustaining medical treatment if you are terminally ill,permanently unconscious or in the end-stage of a fatal illness, thebar association's website says (PDF). The Durable Power of Attorney

for Health Care covers everything. Both documents are calledadvance directives.

Print out your advance directive and make copies for your healthcare agent, family and spouse. Ask your primary care physician toplace a copy in your medical file. Keep the original someplace safebut accessible. "The last place you want to put it is in a safe depositbox," Malley said.

You can also store the file online at LivingWillRegistry.com. The sitewill give you a wallet card with a registration number that medicalproviders can use to access it.

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Know your state's laws

In Texas, 33-year-old Marlise Munoz's body is being maintained bytechnology after she was declared brain-dead. Erick Munoz says hiswife didn't want to be kept alive by a machine, but the hospital won'tturn it off. Munoz is 19 weeks pregnant, and Texas law prohibitswithdrawing "life-sustaining treatment" from a pregnant patient. Thirtystates have similar end-of-life laws regarding pregnancy, according toa 2012 report (PDF).

Munoz's story illustrates the importance of knowing your state's

specific laws regarding advance directives.

While most states require only your signature, the date and twowitnesses on an advance directive, four require legal notarization.Eight states have specific forms you need to use. In Ohio, there is amandatory statement that has to be written in all capital letters andattached to the advance directive to make it legal.

If you don't select a health care agent, most states have a peckingorder: spouse, adult children, parent, sibling, etc. But in Wisconsin,there no next of kin authority -- meaning if you don't name a healthcare agent, no one would be able to step in and make decisions foryou. In West Virginia, the patient's attending physician can selectwho will be the best decision-maker in that situation.

In some states, getting married revokes the power of your healthcare agent, be it a parent, sibling or friend; your husband or wifeautomatically becomes your health care agent unless you do anotheradvance directive.

These are just examples. To familiarize yourself with your state'slaws and the laws in the state where your family lives, visitCaringinfo.org.

Think about more than the medicine

When Alexandra Drane's sister-in-law was near death, Drane'shusband insisted that they bring the young woman home, despiteseveral other family members' protests. Rosaria Vandenberg had abrain tumor that was slowly taking away her ability to function. The

night before Vandenberg died, her 2-year-old daughter crawled intobed next to her. Vandenberg had been unconscious for a week, butright then she opened her eyes and stared into her baby girl's facewith pleasure.

"If the family had not found the strength to take her home, would Zahave ever held her daughter again?" Drane wonders on heradvocacy site, EngageWithGrace.org, which encourages people totalk about end-of-life care.

Sometimes the little things make a big difference when you're ill. ForMalley's grandmother, it was having her toes free; she hated whenthe hospital nurses tucked the blanket under her feet, he says.

Let your health care agent know if you have specific spiritual

requests or would like music piped into your hospital room. Agingwith Dignity offers "5 Wishes," a downloadable advance directivethat's legal in 42 states and addresses these types of non-medicalend-of-life issues.

"People say, 'I want to be with my family. I want to be comfortable. Iwant to be home if that's possible,' " Malley said. "What are you mostconcerned about? What are your fears? Oftentimes, people near theend of life are afraid of being alone, afraid of being in pain, andthey're afraid of losing control."


6 1/12/2014 4



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726 comments

Show One New Comment

Best

• •

Mike •

"The eighth-grader has since been released from the hospital and moved to anundisclosed location, where the family's attorney says she is "improving." Really? Youcan't improve when you are dead. This "attorney" and the "long term care facility" are abunch of scumbags profiting from the familys denial.

• •

CayucosDrew •

The family is obviously suffering because of the suddenness of the death, butsomebody needs to get through to them. There's nothing natural about keepinga body "alive" artificially. I've told my loved ones that I'm coming back to hauntthem if they won't let me go!

• •

Zephon •

Do not count on your "loved ones" to make a decision based on yourwishes.

They frequently disagree on when to pull the artificial life support.

My recommendation would be to have an Advance Directive, Living Willthat specifically puts your decisions in writing in a legally bindingdocument.

• •

CJZam70 •

God answers all prayers..and sometimes the answer is no..Mom needsto let her go.

• •

David Pearl •

No CJ, but rather, the Flying Spaghetti Monster answers allprayers. My evidence for this is the same as your evidence.

• •

Penny Boppie •

I hate break it to you but there are no mystical beings. Belief inthe wrong mystical being is what is responsible for the killing ofthousands of people each year. Mankind is doomed unless wecan stop living the belief system of cavemen.

• •

Forrest •

You have no more proof that there are no mystical beings thanthose who believe in them have proof that they in fact do exist.I'm an agnostic so I believe in the possibility that either side maybe right. But your extreme disbelief is just as radical as theirextreme belief. The difference is that you non believers are fartoo condescending when spouting off your extremist beliefs.

Canuck •

We cannot prove there are no mystical beings although reason


6 1/12/2014 4

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