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If you are diagnosed with a life-limiting disease,
Dr. BJ Miller in his book A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death by BJ Miller and Shoshana Berge. [Simon & Schuster. New York. 2019] page 125
Suggests that your doctor needs to know what is not making sense to you, and that you ask questions, and that these are some questions to ask.
- What is this treatment meant to do?
Is it going to cure me?
Make me live longer?
Make me feel better?
- What side effects can I expect from this treatment?
How long will they last?
What can be done about them?
- What does "success" look like for this treatment?
Is there any risk to trying it?
Can I stop it once I've started?
- How long until I know if the treatment is working?
- What are the alternatives?
What happens if I don't do this?
- Should I consider hospice?
If not now when?
Would you be surprised if I died from this illness within a year?
If your answer is "no," should we rethink hospice soon?
Katy Butler in her book THE ART OF DYING WELL: A PRACTICAL GUIDE TO A GOOD END OF LIFE [Scribner 2019] suggests:
Make sure you and your doctor are on the same page.
The five traditional duties of medical professions are to:
- prevent disease,
- to restore functioning,
- to prolong life,
- to relieve suffering,
- and to attend to the dying.
Sometimes these intentions may be contradictory to your goals of comfort and care, you may want to consider. . .
Each and every time a new treatment is proposed ask your doctor:
✔ What do you hope this treatment will accomplish?
✔ Are you hoping to cure my disease, or slow it down? [ how long might I live? ]
✔ What are the pros, cons, and alternatives? [ how will I feel? ]
✔ Can we bring in palliative (comfort) care to help manage my symptoms and pain?
✔ Will this treatment make me feel and function better or worse on a day-to-day basis?
THEN THINK THROUGH WHETHER THESE PRIORITIES MATCH YOUR OWN, AND WHETHER THE TRADEOFFS ARE WORTH IT.
Ask your doctor:
✔ What is it like to die of my disease, and how can medicine ease my symptoms?
✔ Will you still be my doctor if I decide to opt for strictly palliative care?
✔ When do patients with my disease benefit most from enrolling in hospice?