What a doctor wishes patients knew about the end

[left-of-center2012]

(BJ Miller, M.D. is a hospice & palliative medicine physician who sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center. He is the co- author of "A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death.)

As a hospice and palliative medicine physician, my job is to help reduce suffering. At the end of life, that job becomes especially intense when time is short, when machines and data seem to be taking over, and so many intense emotions surround a body that is trying to die. In the spirit of palliation, here are a few things, as a physician, I wish I could share more often with patients and their caregivers.

You don't need to be dying to receive palliative care

Palliative care is an approach, framed within the context of serious illness, where easing suffering is the goal. So, you just need to be sick and suffering to qualify for palliative care, not necessarily dying any time soon. Don't be afraid to say you want it.

Don't wait for your doctor to bring up hospice

In an effort to get primary physicians to think sooner about recommending hospice, researchers came up with the "surprise question." As in: "Doctor, would you be surprised if your patient died within a year?" If the answer is no, then that doctor should start considering a referral to hospice. But there is nothing stopping you from asking the surprise question yourself. If you live with advancing chronic illness and are thinking about how you want your life to go, you might turn the table and ask: "Hey doc, would you be surprised if I died in the next year?" This is a good and bold way to open an honest dialogue with your doctor and get the sort of support you need.

To the caregivers: Don't be afraid to leave the room

How many times will they have spent hours gathered in the room, not eating or sleeping for days, barely blinking, not wanting to miss that last breath, only to have the person die just when they nod off or use the bathroom?
As any hospice worker can tell you, this is also a well-known phenomenon. It's almost as if the presence of others -- especially deeply loved ones -- gets in the way of the dying person's final step. That big moment may need to happen alone. What dying people seem to need at the very end is to know that the people they love are going to be OK; that life will go on and that you -- the person they care for -- will be able to take care of yourself. So, the kindest thing you can do is to demonstrate that care by leaving the room when you need to. Just be sure to give a kiss and know that it may have to be the last.

https://www.cnn.com/2019/07/18/opinions/doctor-advice-facing-death-miller/index.html