Editor's note: This commentary is by Betsy Walkerman, who is the president of Patient Choices Vermont, which successfully advocated for the passage of Vermont’s End-of-Life Choice Law (Act 39). She resides in Underhill.
[P]reparation and planning – we do it all the time – grocery lists, Band-Aids in the cupboard, water and snacks in our backpack for a hike.
Similarly, end-of-life planning should have your attention. While I appreciate Richard Davis’ commentary on Vermont’s death with dignity law (Act 39), he lists what appears to be a very complicated set of steps in the process. It is not as insurmountable as he describes, even financially. Meeting the requirements and challenges can be translated into a step-by-step set of plans that any eligible patient might utilize. This is not to say that any end-of-life journey is easy. But a concrete plan helps individuals and families navigate the complex emotional landscape.
I speak from personal experience. My father used Act 39 in October 2015, when he was declining rapidly from lung cancer. Years before, while he was robust and healthy, he made sure that his primary care doctor would support his end-of-life choices. When he was diagnosed with lung cancer, the first question he asked his oncologist was whether he would support this choice. Dad discussed his preferences at length with the whole family on many occasions.
Medical aid in dying was a life-giving treatment for my father. It enabled him to avoid mind-numbing drugs in his last weeks. It clearly put him in charge when there were decisions to be made about various procedures and treatments specifically because he had an alternative other than debilitating suffering. Instead, my father had what he said were the most meaningful conversations of his life.
Don’t leave end-of-life discussions to the end. Talk to your primary care physician and key specialists now.
Our stories may or may not unfold the way we would like, especially with health challenges near the end of life. But if you want to give yourself the possibility of maximum choice when the time comes, plan now. Here are some suggested steps:
• Don’t leave end-of-life discussions to the end. Talk to your primary care physician and key specialists now. I’m 63 and healthy, and I did this five years ago. Make sure your doctor will support you throughout the Act 39 process. If not, specifically request a referral to a doctor who will. This is just like a referral for any other care that your doctor may not handle. It is part of their responsibility. At the same time, there may be a philosophical or emotional component for the doctor as well, especially the first time she or he is asked. There are a growing number of Vermont doctors who have experience and fully support end-of-life choice, and the more of us who ask, the more doctors will educate themselves and be prepared to help us.
• Talk to your family. Do this while you are healthy. Help your family envision the kind of peaceful end of life that you would like, and let them know that you have chosen doctors who support your choices.
• Plan on three to four weeks to allow for the process when the time comes. If you are not already working with a physician who supports your choice, allow six to eight weeks. If you have a terminal diagnosis, there’s no harm in starting the process. You are in charge and can ultimately decide whether or not to take your terminal medication at any time. The steps required by Vermont’s End-of-Life Choice Law (Act 39) were carefully crafted to make sure that those persons using the law are taking deliberate and well-informed choices. Two doctors must agree on your prognosis, and you will need to make two oral requests and one written request. It’s not complicated.
• It’s OK to ask for help. Most of the people who are close to you will want to support you and help you live your last weeks and months in peace and dignity. They can help by picking up your prescription and making whatever arrangements you choose.
• Not all drugs cost $3,000. Recent articles cite the exorbitant cost of the drug usually prescribed for medical aid in dying. Make sure your doctor checks with the doc-to-doc program at Compassion and Choices for the latest information on a medication approach that will be appropriate for your condition and your budget. Options are available at a small fraction of this cost.
• Some insurance does cover the cost. Most insurance does not. Check your plan.
• Lastly, prepare and sign your medical directives.
Here at Patient Choices Vermont, we frequently receive grateful letters from people who appreciate the comfort of end-of-life choice. We sincerely hope that this planning guidance will help many more people prepare for this sensitive and meaningful part of life.
Resources to help you include:
Vermont Department of Health website
Patient Choices Vermont
Compassion & Choices
