He wanted to die at home with his dog by his side and his friends all around enjoying pizza and beer. Thanks to his hospice care team, that’s just how it happened.
“This patient was a younger guy from a small town, but was hospitalized in a major medical center when we met him,” said Michael Paletta, MD, FAAHPM, vice president, Medical Affairs and chief medical officer for Hospice of Michigan and Arbor Hospice. “He had accepted the fact that he was not going to be cured and as he shared how he wished to proceed on his end-of-life journey, our entire team mobilized around him to ensure dignity, comfort and peace. His motorcycle buddies formed an escort caravan around the ambulance we arranged to transport him the hundreds of miles back home. He died according to his wishes and everyone felt good about it.”
If you found yourself suddenly facing end-of-life, do your loved ones know how you want to live out your final days, especially if you cannot communicate your wishes?
Death, especially our own, is not a topic most of us are comfortable talking about. But discussing and documenting who you want making medical decisions on your behalf if you’re unable, the medical treatment you do and don’t want and what personal, spiritual and emotional support you prefer will help ensure your end-of-life experience is controlled, dignified and peaceful.
So where to begin? Dr. Paletta offers this advice: the most opportune time to put a medical emergency plan in place is when a young couple is starting out. “As partners begin taking a look at all the things they are facing, like planning for children, securing a mortgage, selecting life insurance, they should also clarify their preferences if they become catastrophically ill,” says Dr. Paletta.
If you’ve missed that window, the best time to plan is NOW, wherever you are in life. It’s never too late to discuss your end-of-life wishes with your loved ones.
Once you’ve had the conversation, it’s not set until you put your preferences in writing. Dr. Paletta recalls a patient’s family struggling with the son’s insistence that his father was a fighter and would want every life-saving measure. His sister maintained dad told her he “didn’t want to be like a vegetable” and would not want such intervention. “Both the son and daughter were right and sincere,” says Dr. Paletta, “but since dad didn’t have an advance directive, it’s like the conversation never took place.”
Select a patient advocate you trust to carry out your wishes, whether or not your advocate personally agrees with them. “Most families have an alpha member who most often takes charge,” says Dr. Paletta. “That person may not be the best choice, substituting their feelings in making decisions. An alpha advocate might decide ‘mom didn’t want a feeding tube but we’re going to do it anyway.’”
Any family member or close friend or acquaintance can be selected to make medical decisions on your behalf. Under Michigan law, however, only patient advocates designated in writing are recognized.
Draft an advance directive that is specific and comprehensive. Don’t use vague language, such as not wanting “heroic measures.” Be very clear about which medical interventions you do and don’t want. A patient advocate cannot override your advance directive, but your wording should not leave your desires open for interpretation.
Equally important to addressing medical treatment is documenting the ambiance you want surrounding you at end-of-life. “It’s not for us to decide what makes someone else comfortable, or what a ‘good death’ entails for another,” says Dr. Paletta. “We might think quiet and candlelight, but not everyone wants that. Someone may want blaring rock or Beatles music or want to wear a specific blue dress. We have a right to decide how we want to die and have someone carry that out.”
Creating an advance directive does not have to be an expensive effort involving a lawyer. Hospice of Michigan directs patients and families to Have You Had the Talk (http://haveyouhadthetalk.com/) for resources and tools to help facilitate conversations and create a binding advance directive.
“It’s a great, easy-to-use guide,” says Dr. Paletta. “I used it with my own mom.”