Longtime columnist Ellen Goodman says of her mother, “We talked about everything except one thing: how she wanted to live at the end of her life…
In my mom’s last years of life, she was no longer able to decide what she wanted for dinner, let alone what she wanted for medical treatment. So the decisions fell to me. Another bone marrow biopsy? A spinal tap? Pain treatment? Antibiotics? I was faced with cascading decisions for which I was wholly unprepared…
The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made…”
That experience led Goodman to co-found The Conversation Project, which is designed to help people have “the conversation.” Eighty-two percent of people say it’s important to put their wishes in writing and yet only 23 percent have actually done it.
You may have strong opinions on whether you would want a doctor to hook you up to a breathing machine or insert a feeding tube. Or if your heart stops, you know if you want to be resuscitated. You know if quality of life is more important to you than the quantity.
These are tough, but important, questions. Having a conversation about what matters most to you and your loved ones and then putting your wishes in writing is important. But far too few people do it before it’s too late and their families have to make the tough decisions on their own.
Sixty percent of people say that making sure their family is not burdened by tough decisions is “extremely important,” and yet, 56 percent admit that they have not communicated their end-of-life wishes.
While it’s important to put your wishes in writing, it’s also critical to designate a health care agent in the event you cannot communicate yourself.
Dr. Jim Stevenson talks about a case he had in which a middle-aged man with advanced lung cancer was brought into the emergency room following an accident. The man was unresponsive, but clearly in pain, and it took three or four days to identify a decision maker to determine what the patient would want for life-sustaining treatment.
Increasing the number of Advance Directives (a document in which you put your wishes in writing and designate a health care agent) executed by individuals 65 years and older is a stated goal for Waldo County General Hospital during 2013. The plan is to accomplish this through the hospital’s employed primary care doctors’ offices and at the five health centers.
To help with this goal, the hospital is offering a number of presentations to hospital personnel, Hospital Aid and Hospice volunteers, and the community through a presentation on the local cable station, access at Health Fairs and community classes, and placing Advanced Directive packets at nursing homes, Spectrum Generations, the local Agency on Aging and on the hospital’s website.
Dr. David Giansiracusa, who specializes in Hospice Care and palliative medicine, talks to WCGH staff about Advance Directives.
On April 23, Dr. David Giansiracusa, a physician in Portland, who specializes in Hospice Care and Palliative Medicine, did a presentation on Advance Directives for medical staff and other interested parties at the hospital. He said Advance Directives are important so doctors know what to do when a patient is unable to express his or her wishes. And based on the incident at the Boston Marathon, “everyone is vulnerable to being unable suddenly to express his or her wishes,” he added.
Giansiracusa said Advance Directives “prevent a huge amount of suffering,” adding, “It is difficult to care for a patient whose wishes are not known and it creates conflicts within the medical staff and within the family. The family has to live with uncertainty.”
He said advance care planning helps the health care agent understand the values and beliefs of the patient, which provides a foundation for making decisions. Advance care planning is “preparing for the in-the-moment medical decisions” that often need to be made, he said.
“If you don’t want to do it for yourself, do it for your loved ones,” Giansiracusa said. He said visiting The Conversation Project website is a good way to get the conversation started. And the decisions that are made should be shared with all involved “to decrease confusion and conflict and to provide peace of mind to the patient and his or her family.”
He said advance care planning should be a routine part of medical care for a primary care provider. “I think it is equally important as allergies and medications list,” he said, adding he thinks primary care providers should be asking their patients “what type of life would be intolerable.” And there should be notes in the patient’s medical record about the discussion.
So no matter what your age, if you are interested in making your wishes known and having them carried out, ask your primary care provider about completing an Advance Directive packet and providing a copy to your doctor, the hospital, with your health care agent, and at your home.