By Peggy O’Neill
May 2, 2012
The Rev. Jim Shelden thought he had a good idea. He suggested to his wife and two adult daughters that they all sit down together and discuss advance directives, otherwise known as instructions for end-of-life care.
Shelden, the chaplain at St. Peter’s Hospital is fit and he takes good care of himself, but he does have a bad heart and a pacemaker that keeps it beating at a normal rate.
But shortly into the discussion, Shelden’s oldest daughter who is a pediatric nurse burst into tears. “Dad, I can’t let you go,” she said to him.
Although Shelden often helps hospital patients fill out advance directives forms, he realized how deeply personal the issue is.
Shelden finished writing his own directives; in fact, he’s rewritten them three times.
“You have to think about what you want to leave for your children to deal with,” Shelden said.
Dr. Ashley Basten, a hospitalist at St. Peter’s, too often sees what happens when a patient has no advance directives and family members have to make decisions for their dying loved one.
“It’s so hard to see the guilt that people have,” Basten said. “It you’ve never had a conversation with your family, the guilt is horrible.”
Family members often choose to prolong care when they don’t know what to do, and often times this prolongs suffering, Basten explained.
“It’s harder to take something away than to never start it,” she said.
Basten described one patient who had ALS. After the diagnosis, the patient deteriorated rapidly and became nonverbal. While living in a nursing home, the patient kept getting urinary tract infections and would have to be admitted each time to the hospital, where a PEG (percutaneous endoscopic gastrostomy) tube and suprapubic catheter would be inserted into the patient.
“The patient should have been a happy grandparent playing with grandchildren,” Basten said.
Basten says she sees these types of situations every week.
“I cry every week,” she said.
Whenever a patient is admitted and can discuss this issue, Basten says she immediately asks their “code status” — whether or not they want to be resuscitated.
“It gets the conversations going,” Basten said. “It’s a good way to open the can of worms.”
Depending on the age and condition of the patient, Basten said she describes what types of measures could be taken and the possible consequences.
“If they do want to be resuscitated, we could be doing things like shocking their heart, chest compressions, shoving a tube down their throat,” Basten said. “It’s aggressive. I want people to know how aggressive it is. We do a lot quickly to people who are dying who don’t want to be dying.”
For some people, the chances of surviving all the intervention procedures are low, Basten said.
Advance directives refers to several forms a person can fill out, sign and have witnessed and notarized to indicate their wishes for end-of-life medical care. These forms can be obtained at a hospital or health care provider.
POLST: Providers Orders for Life-Sustaining Treatment is a form that summarizes an individual’s wishes for life-sustaining treatment. It provides official documentation of medical orders on a two-page standardized form. It is intended for people with advanced, life-limiting illnesses and is usually filled with the help of a doctor, nurse or hospice provider. (This form is available online at polst.mt.gov.)
Durable power of attorney for healthcare: This is a legal document that designates another person to make healthcare decisions for a person who becomes unable to make such decisions themselves. These include giving, withholding or stopping any healthcare treatment, service or diagnostic procedure.
Living will: A document initiated by any capable/competent adult person directing both family and physician to withhold or withdraw medical treatment that would only prolong the process of dying in the event of incurable or irreversible conditions.
Five Wishes: A document that an individual can fill out that answers the following: the person you want to make care decisions for you when you are unable to, the kind of treatment you want or don’t want, how comfortable you want to be, how you want people to treat you and what you want you loved ones to know.