What is a good death? And how to communicate with physicians about end of life care

Yesterday I had an informal conversation with palliative care PA Fiona Sampey about end of life care, and how to plan with your family months and years before a bad diagnosis or change in medical condition occurs.

We discussed how to have the conversation, when, what legal documents make this inevitable process easier and better, and why these conversations need to happen years before a terminal diagnosis or traumatic event.

That conversation can be watched on our Facebook page or on the below YouTube Link.

During the conversation, I promised to post twenty questions I think patients and their families should ask of healthcare providers when a terminal diagnosis or traumatic injury occurs. These questions will open the communication links and hopefully allow family members and patients to make more educated decisions, build trust with providers, and prevent the additional pain that comes from unknowing.

I hope this list proves to be helpful for you and your loved ones during a healthcare emergency:

1. Who is in charge of my loved one’s medical care right now? (primary care physician? hospitalist? critical care doctor? palliative care)
2. How often will my loved one be examined, or how often will this person be checking on my loved one?
3. How is the best way to reach this person with questions? Text? Mychart? Have a nurse call?
4. What is their actual diagnosis – all of them? (ask for specific conditions and write them down)
5. How often is the provider in the building?
6. What are the treatment options?
7. Will the treatment cure, or simply delay death?
8. How long will treatment take?
9. Where does treatment occur?
10. How is it paid for? (for example, nursing home care is not paid for by insurance – Medicare only pays 100 days)
11. What is the worst case scenario for the patient with this treatment plan – pain? suffering? loss of independence?
12. What is the best case scenario for this patient?
13. Are they a hospice candidate (less than 6 months to live)?
14. If so, where is that provided?
15. How do we ensure they don’t suffer needless pain? Who is in charge of pain management?
16. How do we handle the payment of this pain management?
17. Is end of life days? Weeks? Months?
18. Can we stay in this facility throughout?
19. What treatment is provided / what treatment is avoided during hospice? (Oxygen? Food? Etc?)
20. If we need to remove treatment – how do we decide / who is involved with that decision?
21. Even if my loved one is a fighter, what does this typically look like?
22. As a caregiver, how shall I plan to help – time away from work, family, etc.

While death is inevitable, getting the information you want and need is not guaranteed. Ask good questions and get enough information to make informed decisions. BE kind but firm. If you are not being given answers, keep asking.

Good luck all —

Lauren