A reflection tool for values-based planning
As part of Step 16 in the Guide to Exploring, you are invited to describe any health states you would personally find unacceptable — situations where you would prioritize comfort-focused care over life-prolonging treatment.
In your completed plan, your responses from Step 16 will be written as:
“From my perspective, there are conditions I consider worse than death. These include…”
This page is designed to help you think through what you might want to include after that sentence. You may copy and paste wording from this page directly into Step 16, or adapt it in your own words.
Examples to Consider
Some people identify the following health states as unacceptable for themselves:
- Persistent vegetative state
Complete loss of awareness and ability to interact with the environment, with no realistic chance of recovery. - Locked-in syndrome
Full awareness with near-total paralysis and inability to communicate beyond eye movement. - Chronic and untreatable pain or suffering
Ongoing suffering that cannot be adequately relieved despite appropriate medical care. - Total dependence on life-sustaining machines
Permanent reliance on a breathing machine, feeding tube, or dialysis without meaningful quality of life. - Severe cognitive and functional decline
Inability to recognize loved ones, communicate needs, or maintain awareness, combined with ongoing distress or total dependence. - Significant impairment of consciousness or clarity
Minimally conscious states or severe brain injury with no reasonable hope of recovery or meaningful interaction.
Additional Quality-of-Life Considerations
The following are examples of real outcomes from serious illness that may not be as severe as the health states listed above, but are nonetheless valid and meaningful concerns for many people.
As you review these, consider:
- whether any of these would be particularly distressing for you
- what aspects would matter most
- whether there are workarounds or supports that might make these situations acceptable
Some people reflect on concerns such as:
- loss of mobility or independence
- inability to communicate clearly
- cognitive decline or persistent confusion
- being bed-bound
- incontinence
- feeding tube or breathing tube dependency
- unrelenting fatigue or pain
- requiring constant care
- feeling like a burden on loved ones
- loss of dignity, identity, or sense of purpose
Considering Time and Duration
For many people, how long a condition lasts is just as important as the condition itself.
When completing Step 16, consider:
- Would this condition be acceptable for a limited period of time if meaningful recovery were expected?
- How long could you tolerate this situation — weeks, months, or a year?
- At what point would ongoing treatment no longer align with your values?
You may wish to include language such as:
“If this condition were permanent or lasted longer than ___, I would prioritize comfort-focused care.”
“I could accept this temporarily if recovery is likely.”
How to Use This in Step 16
When completing Step 16 of the Guide to Exploring, you may:
- write in plain, everyday language
- copy and paste examples and edit them
- include time-based limits or conditions
- revise your wording as your views evolve
Your goal is to provide clear guidance so loved ones and healthcare teams understand what matters most to you if you are unable to speak for yourself.
The examples below are meant to help you get started. You’re welcome to copy and paste one and adjust the wording so it reflects what matters most to you, or write your own from scratch.
Example A: Prioritizing Awareness and Communication
From my perspective, there are conditions I consider worse than death. These include severe cognitive impairment where I can no longer recognize loved ones, communicate in any meaningful way, or have clear awareness of my surroundings. I could accept temporary limitations or dependence on others if meaningful recovery were expected, but if this loss of awareness or communication were permanent or long-term, I would want my care to focus on comfort rather than prolonging life.
Example B: Concern About Loss of Dignity and Total Dependence
From my perspective, there are conditions I consider worse than death. These include living with ongoing incontinence, requiring constant hands-on care for all daily needs, and feeling that I am a significant burden on my loved ones, particularly if this is combined with loss of dignity or independence. I could accept a period of increased care or dependence if recovery or improvement were expected, but if this situation were long-term or permanent and no longer allowed me to experience dignity, comfort, or a sense of self, I would want my care to focus on comfort rather than prolonging life.
There are no right or wrong answers here. This step is simply about helping others understand what matters most to you, if you’re ever unable to speak for yourself.
