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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.

  1. What is this treatment meant to do?

    Is it going to cure me?

    Make me live longer?

    Make me feel better?

  2. What side effects can I expect from this treatment?

    How long will they last?

    What can be done about them?

  3. What does "success" look like for this treatment?

    Is there any risk to trying it?

    Can I stop it once I've started?

  4. How long until I know if the treatment is working?

  5. What are the alternatives?

    What happens if I don't do this?

  6. 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:

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?