“Death in our culture is scary. No one wants to talk about it,” says Dr. Tricia Langlois, medical director at Hospice of the Red River Valley.
While she was still training to become a doctor, Langlois lost 12 people in one week. She immediately experienced an overwhelming sense of guilt and anxiety.
“I thought I was a terrible doctor; ‘I killed them, I didn’t do my job. I’m going to lose my job,’ ” she says, recalling her thoughts. “It finally dawned on me through mentorship from my fellowship director: Despite everything that you do, your patients will die.”
For most of human history, dying — like birth — was a familial and religious event full of ritual, taking place at home. Since the 19th century, a once abrupt death has transformed, through modern medical advancements, into a process of dying.
“Today approximately 80 percent of patients are dying in the hospital,” Langlois says. “Most people you talk to don’t want to die in the hospital. They want to die at home around family.”
The typical American can now expect to live on average 78.8 National Center for Health Statistics. Dying a “slow death” creates questions around life-prolonging treatment rarely stalked about.
Health Care Decision Day, as declared by North Dakota Gov. Doug Burgum, encourages friends and family members to start talking about their wants and wishes through advance care planning. Nationally, this week (April 16-22) promotes the value of advance care planning and the importance of executing advance directives.
Organizations like Hospice of the Red River Valley and Honoring Choices North Dakota provide resources to start these conversations because they have seen what happens when these decisions are hastily made.
“We should be having these conversations as early as possible,” Langlois says. “But it tends to happen when people are in the hospital and in the midst of chaos with providers they don’t know, having to think on their feet. ‘What do I want? What do I want done?’ “
Advance care planning begins early
Advanced care planning starts with you. Consider your medical history and what you would like to happen if the worst should happen.
“Think about what may happen in life, what diseases you have, how those diseases will change over time and what you want done in particular situations,” Langlois says.
Define your values and set treatment goals based on these: What would your goals look like if a cure was no longer viable through medical treatment? Some want to be comfortable without machines, surrounded by loved ones at home with their affairs in order. Others prefer utilizing life-prolonging medical advancements. Langlois affirms that both options are OK and the decisions are deeply personal.
Share wants and wishes first with family and loved ones and then with your healthcare provider.
Document wants and wishes
A health care provider helps to document a person’s preferences by filling out an advance directive.
“I may have different wants or opinions than my patient,” Langlois says. “I can’t put my needs, wants or wishes on that patient, so it really helps me to understand what they want and where they need to be.”
In North Dakota, an advance directive includes four legal documents. Forms for advance care are usually free and can be easily accessed online.
First, the Durable Power of Attorney for Health Care — also known as “health care proxy” — document identifies the person who will make any medical decisions for you if you are unable to do so.
Second, the Five Wishes form helps to define what life-prolonging measures you would want in any “if-then” situations (i.e. If there is no chance for recovery in a coma, then I do not want feeding tube). The Five Wishes form is simple and easy to use. Once it is signed and witnessed, it is a legal document.
Next is the living will — a written statement of a person’s desires regarding end-of-life care. A living will allows a person to define why they wouldn’t want a particular life-prolonging procedure for a particular reason.
Lastly, Physician Orders for Life-Sustaining Treatment (POLST) expresses specific medical orders for emergent medical care. POLST is not for everyone, rather people suffering from a serious illness.
“A loved one who knows you and what you want with some specifics outlined is the best of both worlds,” Langlois says. “It helps loved ones make sound decisions about end-of-life care while keeping their peace of mind.”