My Opening Statement
Before you begin answering the questions asked by My Own Voice and, in doing so, making your wishes regarding your care clearly known, are there any opening remarks you would like to share with the family, loved ones and caregivers who will be watching this video?
- What do you want your family, loved ones and caregivers to know about you as they face making some tough decisions regarding the extent of your care or allowing you to die naturally?
- Are there any specific conversations, stories, or shared experiences that you would want people watching this video to remember and think about when they are having to make those tough decisions?
- What words of comfort or encouragement can you share here to give the viewers of your My Own Voice video to give them the courage and commitment they’ll need to honor the wishes you will express in this video?
My Primary Decision Makers
If you are sick, disabled, and not able to communicate or make decisions on your own, who do you want to make decisions on your behalf about your medical care? If that person wasn’t available, who would you choose as an alternate decision maker?
- It is far more effective to choose a single individual to be your primary decision maker rather than two or three.
- Choose someone who knows you very well and whom you feel will be able to make the tough decisions about your life, your death and your care if you’re unable to and, importantly, in line with your wishes.
- Consider who is going to have the courage and clarity to honor your wishes expressed later in this video, even if the situation gets clouded by the emotions and doubts of others.
- Do you feel this person will be able to approach this difficult scenario thinking solely and fully about what you would want, not what they would want for you?
- Keep in mind that this may or may not be a close family member.
- Keep in mind as well that this person generally can not be your doctor, nurse or other healthcare provider, because those people are looking to your primary decision maker for decisions, not looking to make them for you solely on their own.
- Keep in mind that all the questions that follow will only help to guide others on the care and treatment you receive if you are unable to communicate your wishes on your own. Making these wishes known in advance through My Own Voice—and assigning specific individual(s) to make those decisions for you—will make certain your family, friends and caregivers clearly understand and honor them.
What Makes Life Meaningful
What makes life worth living for you and, were you to lose your ability to do those things, would make life less meaningful or not worth living?
- Think about completing the sentences, “As long as I can ___________, life is worth living for me,” or “When I lose the ability to ________, life will no longer be meaningful or worth living.” Examples could be anything from being able to carry on a meaningful conversation to watching your favorite TV shows, or from being able to eat your favorite foods to being fully mobile.
- Consider what abilities, bodily functions, activities, hobbies, interests, etc. are essential to you and to what you would consider an acceptable quality of life?
- Or consider what activities, bodily functions, abilities, hobbies, interests, etc., if you were to lose them or be unable to perform them on your own, would erode your quality of life to such a extent that you want to be allowed to die naturally?
My Hopes for My Final Days
When you think about the very end of your life, what would you like that to look like? How would you describe that experience?
Considerations: Understandably, we can't control everything about how we're going to die. But if you could control some things, what would you hope for?
- Where are you: at home, in a hospital or hospice care facility?
- Who’s with you and what are they doing?
- What’s surrounding you or in the room with you?
- What rites, traditions or activities are taking place around you as you pass away?
- What words/adjectives would you use to describe your state of being?
- What’s being done to you medically (or not) — e.g. Are you on pain medication?
- How do you look — e.g. grooming, clothing, etc.?
- What medical devices are connected to your person (or not) — e.g. Are you on life support machines?
My Fears for My Final Days
When it comes to the end of your life, what do you most fear or want to avoid?
- How do you NOT want to die or, said another way, NOT want to live your final days, weeks or months leading up to your death?
- What do you fear about your last days alive? What situations or circumstances or state of being would, in many ways, be a fate worse than death for you?
- Consider someone you know or heard about whose death you would NOT want to imitate. Think about completing the sentence, “When my time comes, I do not want to die like _______________. What scares me about his/her death is _______________, or what I want to avoid if possible is _________________.”
Quality vs. Quantity of Days
Medical science can be incredible in its ability to keep a person alive for an extended period of time. With this in mind, when it comes to your final days, would you place more importance on the quantity of those days or the quality of them?”
- In other words, do you want to be kept alive by whatever means possible as long as possible even if your quality of life eroded?
- As you answer this question, consider your response to Question Three and what makes life meaningful and worth living for you.
Life Extending Measures
If you can’t communicate as a result of a coma, severe brain damage, dementia or disabled condition and there is little real hope of a cure or recovery, what life-extending measures and treatments do you support your decision maker withholding? What life-extending measures do you not want done?
- Typical life-extending measures (or sometimes referred to as life-support measures) include connecting you to devices to help you breathe or breathe for you, feeding and hydrating tubes, kidney dialysis, etc.
- Life-extending measures can also include giving you antibiotics to fight infections or the onset of certain illnesses, surgery and blood transfusions.
- You may want your decision maker to issue a directive to your caregivers to allow you to die naturally if your heart stops beating or you stop breathing on your own. (This is sometimes referred to as a Do Not Resuscitate order, or DNR.)
- You may want to ensure that medical procedures are done only to ensure your pain-free comfort but not to extend your life.
- Said another way, if the removal of certain treatments, procedures or life-sustaining devices would more allow a quicker natural death, you’re ok with that provided any increased pain resulting from this change in treatment is well managed.
- You may not want them to do anything to extend your life given the inevitable, and if so you should say so.
Instructions for After My Death
After you pass away, what do you want to be done with your body?
- Do you want your organs donated? If so, any of them that are needed or just specific ones?
- Do you wish to be cremated or buried?
- Are there any specific wishes about your funeral or memorial service that you want known?
My Closing Remarks
Is there anything else you would like your family, friends and loved ones to know?
- Are there any other important things about your life or life experience that you want your decision to maker to remember about you as they have to make any tough decisions?
- Beyond the wishes you have articulated already, are there any other things that you would like to say to those people who will be watching this video?