How to Make Your End-of-Life Wishes Known

Just having the documents won't ensure your directions will be heeded

By Bart Astor
Originally Posted On May 15, 2014

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Bart Astor, an expert in life transitions and elder care, is the author of the book AARP Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle and Pursuing Your Dreams and Baby Boomer’s Guide to Caring for Aging Parents. His website is BartAstor.com and he can be reached at Bart@BartAstor.com.

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The main purpose of health care directives and proxies, durable powers of attorney and living wills is to give you control of your health care. They are legal documents that allow someone you designate to instruct medical personnel about your wishes should you become incapacitated.
 
Often, when you are admitted to a hospital — even for routine operations and procedures — you’re asked whether you have a living will or one of the other health care directive documents, and if not, whether you'd like to sign one. The admitting department generally includes it in the papers they review with you, assuming you weren't admitted in an emergency. You are not under any pressure to sign; in my experience, admitting personnel are usually quite sensitive when it comes to bringing up the topic.
 
Once you have one of these legal documents, hospital personnel keep a copy in their records and that's noted on your chart, whether electronic or hardcopy.
 
Do Not Resuscitate (or DNR) orders, however, are quite different.

They must be signed and ordered by the treating doctor, not just by you or your proxy. DNRs are in no way considered routine. They are meant for people who are terminally ill or significantly incapacitated and essentially instruct hospital personnel not to take extraordinary measures to keep you alive if you stop breathing or your heart stops.

These orders are also kept in records that hospital personnel can access. Although there might be some gray areas when it comes to defining “extraordinary measure,” there’s a general understanding. Most doctors and nurses are comfortable with what they should or shouldn't do for a patient with a DNR.
 
Lack of Communication and Crisis
 
Kathy Cowan and her husband, Paul Shepherd, learned the importance of clarity and communication about a DNR during Shepherd’s last, tragic hospital stay.
 
Shepherd had lymphoma and had undergone aggressive chemotherapy that did little to stop the spread of his cancer. He had been in and out of the hospital to fight various infections that resulted, in part, from having been in the hospital. Having suffered for some time, Shepherd signed a DNR, and it was entered into his hospital records.
 
As so often seems to happen, Cowan got a phone call at home at 5:30 a.m. from the head nurse on Shepherd's floor telling her they were taking her husband to ICU. “Is he dying?” she asked. “Not yet,” the nurse told her.
 
In a fog, Cowan drove to the hospital and raced through the halls to find the ICU. “Upon entering I saw my husband, eyes closed, lying on a bed in a cubicle,” she recalls. “Someone thrust a paper in front of me. Someone else said, ‘This will keep him breathing.’ I thought it would allow him to awaken and we could say goodbye. I thought that is what my signature would do.”
 
What it did was allow the hospital staff to put a tube in Shepherd, taking an extraordinary measure that he specifically requested they not do.
 
Witholding Measures to Honor Wishes
 
Later in the day, a urologist entered the room where Cowan was sitting with Shepherd, and asked if she wanted her husband to have dialysis because his infections had compromised his kidneys. Cowan was flabbergasted.
 
“Dialysis? That’s an extraordinary measure,” she remembers shouting. “He signed a DNR last week.”
 
Cowan sought out the head of the ICU to ask why measures were being taken and offered. She told him: “He didn’t want this.”
 
Incredulously, the doctor asked where the DNR was. Cowan told him it was with all the other papers her husband had signed. Fifteen minutes later, the DNR was located in Shepherd’s records.
 
By that time, nine and a half hours had passed since Shepherd was first brought into the ICU.
 
With the DNR located, medical staff then began the process of disconnecting Shepherd from lifesaving machines. A half hour later, he died.
 
“It was like going to hell,” Cowan says of the experience.
 
Cowan’s advice to everyone who is a caregiver for someone with a DNR (or living will or health care directive): “Carry that DNR with you. Put a copy on the patient’s bed if he is hospitalized. Call it to the attention of the nursing staff on your floor and to your doctor. Don’t suffer needlessly.”