If I could choose the scene of my death, it would look something like this: in my home, in my bed, in my sleep. Totally unaware that a life-sustaining part of my body is going to fail, and then dying peacefully before I have a chance to understand what’s happening. No pain or emotional trauma for me, and no torturous phase of watching, waiting and wondering for my loved ones.
Most of us want a quick and painless exit from this life. Most of us are not going to get one.
In the developed world, the majority of us are going to slowly die as our bodies’ systems get old, get sick and give out. The period between knowing we’re going to die and actually dying will include feelings of fear and dread. Our loved ones will experience a roller-coaster of emotions as well. In some cases it will take a matter of days, perhaps only hours; in other cases, this in-between stage may take years.
Once we are unable to communicate our wishes about our care, it will fall on others to make those choices. They will hope they are doing “what’s best” or “what they think we would have wanted” when advocating for our care, but if they’ve had no direction from us, they will be driving blind. And trust me, as someone who’s been there, they will agonize over these choices. This not knowing, this not being sure, this having to make assumptions will add to the suffering they are already experiencing in anticipation of our death.
This scenario can be avoided if we are willing to have (what some may consider to be) “difficult” conversations with our loved ones and caretakers. Everyone’s suffering can be diminished when we discuss our end-of-life wishes long before chaos erupts from terminal illness or injury.
To help facilitate these conversations, I highly recommend the Five Wishes©. This is a legal document, available in all 50 states of the U.S. (although there are a few states that have extra requirements for the document to hold up in court). It is available in many languages, including Braille. A single copy costs only $5.
Wish 1: The Person I Want to Make Care Decisions for Me When I Can’t
This section is an assignment of a health care agent (also called proxy, surrogate, representative, or health care power of attorney). This person makes medical decisions on our behalf if we are unable to speak for ourselves. Sometimes a family member is the best person for the job; sometimes this is not the case at all. We want to choose someone whom we trust to honor our wishes.
Wish 2: The Kind of Medical Treatment I Want or Don’t Want
This section is a living will—a definition of what “life support” means to us, and when we would and would not want it. Examples: Do I want CPR? Do I want to be intubated once I can’t breathe on my own? Do I want to be fed through a tube?
Wish 3: How Comfortable I Want to Be
This section addresses matters of comfort care—what type of pain management I would like (morphine is great, but it muddles one’s cognitive abilities), personal grooming and bathing instructions/frequency, and whether I want hospice care to be considered – both for my sake as well as the sake of my loved ones.
Wish 4: How I Want People to Treat Me
This section speaks to personal matters, such as whether I want to die at home, if at all possible. Do I want people to talk or read to me? Do I want my hand held? Do I want music played in my room, and if so, what kind? Would I like to be massaged? Do I want access to my pets?
Wish 5: What I Want My Loved Ones to Know
This section deals with matters of forgiveness, how I wish to be remembered, and final wishes regarding funeral or memorial plans. Also included in this section is a chance to share my beliefs about death with those who will be accompanying me to death’s door.
For me personally, I see death as a transition rather than an end, and as an opportunity for personal growth. I also believe my essence (some might refer to this as our Spirit or Soul) will be reunited with the essence of those I’ve lost, including my son’s. My hope is that sharing this information with my family members and circle of closest friends will offer them some comfort.
The point of the Five Wishes© is to ease the suffering that stems from having to guess, doubt, and assume. When these conversations take place in advance, heart-wrenching choices and decisions don’t have to be made in a vacuum of not-knowing.
This is a gift, especially at a time of – what is for most – a deep sadness.
We owe it to our precious selves, and to our loved ones to prepare. The Five Wishes© can be found at: agingwithdignity.org.
[For my readers outside of the U.S., the Five Wishes© is designed to comply with U.S. law. However, it is a fabulous conversation launching point and guide to facilitate discussion about these topics. I urge you to take a look.]