Thinking about the end of life, at any age, is not a pleasant situation. We spend so much time talking about how to live well with chronic illness that we often fail to make our desires known in the event that life takes a downturn. We may not have considered how we’d like to be treated, or not treated, in our final days. I have only thought about this because I’ve watched relatives have drastically different experiences.
When my grandmother was dying several years ago, it was difficult for my father and his siblings to have the responsibility of deciding what type of life-saving procedures she may or may not have wanted. Even after she and her doctor had signed a DNR (do not resuscitate) order, it failed to prevent the EMTs from taking her to the hospital after a nervous home health aide panicked and called 9-1-1. This event further prolonged her life and suffering, but it did grant me an opportunity to see her “one last time.”
To encourage discussion on End of Life issues, Matt Holt (author, The Health Care Blog) and Alexandra Drane (president, Eliza Corporation) created Engage with Grace™ and the One Slide Project . Read the story of Alexandra’s sister-in-law, Rosaria Vandenberg , whose experience with stage IV glioblastoma and death seven months after diagnosis inspired the project.
“Engage with Grace™ and the One Slide Project have one goal: To help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we lived them.”
Read the five simple questions in the slide below. Commit to being able to answer these questions for yourself, and make sure you and your loved ones have the knowledge and authority to carry out your wishes. Then encourage your family members and friends to do the same. It is about time that our nation enters a serious discussion and brings End of Life issues out of the darkness of taboo topics.
Question 1: On a scale of 1 to 5, where do you fall on this continuum?
- Let me die in my own bed, without any medication intervention
- Don’t give up on me no matter what, try any proven and unproven intervention possible
Your answer to this question may depend greatly upon how you judge quality of life. Do you need to be able to move or eat on your own to have a satisfactory quality of life? How do the needs of your loved ones factor into your decision to undergo medical treatment or not? Is there someone who could become your caregiver if you chose to stay at home? How would your religious or spiritual philosophies affect your choices at end of life?
Read more questions such as these in the Discussion Guide 1 provided by Engage with Grace™.
Question 2: If there were a choice, would you prefer to die at home or in a hospital?
Eventually, my grandmother was brought home from the hospital. She was unconscious and had been receiving nourishment through a feeding tube which was removed. Her doctor counseled the children and together they made the decision to bring my grandmother home to die quietly in her own bedroom.
Question 3: Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?
My mother has had several discussions with myself and my brother expressing her wishes for End of Life care. After watching her own mother die in the hospital and her mother-in-law die at home, it is understandable that she has made some personal choices of her own.
Read the Discussion Guide 3 for suggestions of how to start this important conversation with your loved ones.
Question 4: Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near?
My mother has made it clear that I am the person she wants to be her medical proxy. She feels that I have the strength and fortitude to stand up for her desires and do what is necessary at the right time. It’s a big job but one which I take seriously.
Read the Discussion Guide 4 .
Question 5: Have you completed any of the following: written a living will, appointed a health care power of attorney, or completed an advance directive?
It is important to have documentation which gives legal power to the person or persons you have chosen to make End of Life decisions for you when you are unable to do so yourself.
- A living will is simply a written instruction expressing what treatments you want or don’t want if you are unable to say so for yourself at the time. A living will is also known as a “medical directive” or “declaration” or “directive to physician.”
- A health care power of attorney or “medical power of attorney” is a document that appoints someone to be your chosen/authorized “agent” or “proxy.” It is common practice to have you assign a “proxy” if you wish when you enter the hospital for a procedure. The medical power of attorney is not limited to End of Life issues.
- The living will and medical power of attorney can be combined in a comprehensive “health care advance directive.” An advance directive is often the preferred legal document, but you should check the legal requirements within your own state.
“We make choices throughout our lives — where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. Somehow when we get close to death, however, we stop making decisions. We get frozen in our tracks and can't talk about our preferences for end of life care.” - Engage with Grace™ and the One Slide Project.
Please download the slide and have this important conversation with your loved ones.