CONTENT WARNING: Today I visit an unpleasant subject: end of life issues from the viewpoint of invisibly disabled people. Few people want to think about death, but it eventually comes to us all. Trying to make decisions at that time is extremely emotional. Considering those concerns beforehand gives the affected person, their family, and their doctors the ability to discuss possibilities and wishes calmly.
John and Lynn discussed possibilities before Lynn’s illness, so John and their sons were aware of her desires. One of her sons disagreed with her wishes, but she remained lucid and able to make her own decisions. Their previous discussions eased emotions about treatments at the end.
Joe and I have discussed generalities with each other but not our sons. We need to have that talk.
We invisibly disabled people need to follow John and Lynn’s example.
Planning for your final days is hard, but it’s an invaluable gift to caregivers and loved ones.
Amy goyer and andy markowitz, AARP, September 17, 2020
DISCLAIMER #1: I am neither a medical person nor a lawyer. Be sure to seek the advice of professionals if you have questions.
DISCLAIMER #2: Absolutely nothing I say should be construed to mean suicide. These end-of-life issues speak to situations of serious illness or accident.
About living wills
What
- Legal instructions.
- Covers the medical care you want/don’t want if you are unable to make decisions for yourself.
- Especially important for invisibly disabled or chronically ill people.
Why get one
- Get the medical care YOU want.
- Avoid unnecessary suffering.
- Relieve caregivers of decision-making burdens.
When to do it
- Before an emergency situation arises.
Questions to consider
- How important is it to you to be independent and self-sufficient?
- Are there circumstances that might make you feel life is not worth living?
- Should your life be extended at any cost?
- Do you want treatment only if a cure is possible?
- If, when, and for how long you might want the following: CPR, mechanical ventilation, tube feeding, dialysis.
- If near end of life, do you want infections treated aggressively?
- How do you feel about comfort care–interventions to keep you comfortable and manage pain while abiding by other treatment wishes?
About do not resuscitate and do not intubate orders
- Advanced directive not needed for DNR or DNI orders.
- Doctor writes orders and puts in your record.
- Need to be established each time you’re admitted to new hospital/healthcare facility, even if you have a living will.
About medical (health care or durable) power of attorney
- Legal document naming trusted person other than your doctor to make medical decisions for you if you are unable to.
About physician orders for life-sustaining treatment (POLST)or medical orders for life-sustaining treatment (MOLST).
- Does not replace other directives.
- Like a prescription, it serves as doctor–ordered instructions so that you receive the treatment you prefer.
- Includes details about what treatments not to use, when and how certain treatments can be used, and when treatments should be withdrawn.
- May include resuscitation, mechanical ventilation, tube feeding, use of antibiotics, request not to transfer to an emergency room, request not to be admitted to hospital, and pain management.
- May indicate you have advance directive(s) and who your health care agent is.
- Goes in your records.
- In hospital, post near your bed.
- At home, hospice, or nursing home, prominently display so emergency people will see it.
Actions to take
- Check out your state’s/country’s requirements.
- Find forms online.
- Review with your doctor.
- Keep originals in safe place, easily accessible.
- Give copy to doctor and healthcare agent(s).
- Keep record of who has one.
- Talk to family members about your wishes so they can understand.
- Carry wallet size card indicating you have one and where it is.
- Keep copy with you when traveling.
- Review periodically.
Conclusion
After researching this subject, I see the need to talk with my doctor about which specifics I want/don’t want. I have already made an appointment to do so.
Have you discussed your wishes with the important people in your life, including your doctor?
Investigate Further
Check out these links for more info about end of life issues and invisibly disabled people.
This information is taken from the Mayo Clinic.
Check out this AARP article about how to start such a conversation. If you missed m
If you missed my tribute to Lynn, check it out here.
Yea, this one is hard, even for people not living with any kind of disability. But life is unpredictable. Better to think about it, and if need be, get it in your will.
My research pointed out that accidents and other things can happen to anyone at any age.