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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsWhat a doctor wishes patients knew about the end
(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
LEW
(1,072 posts)what an amazing article! Made me think....and that's a good thing.
marybourg
(12,631 posts)End of Life issues forum.
https://www.democraticunderground.com/?com=forum&id=1285
left-of-center2012
(34,195 posts)I have just now posted it there.
WhiskeyGrinder
(22,345 posts)parents suffer the indignities of living with understaffed institutional care and being subjected to emerging technologies. They know what they don't want.
Tracer
(2,769 posts)He is a dear man that everyone loves, just celebrated his 90th birthday with a 100 of his friends, and is hurrying to finish up a book of his life in the music business.
He's a stubborn old guy, but I sincerely hope that he will go to hospice care, rather than refuse to leave his apartment ("it's got a great view of Boston!" .
panader0
(25,816 posts)My first wife met Kubler-Ross. She worked in a hospital with dying children,
usually from leukemia. The kids would hang on until the parents accepted
what was happening, and then passed quickly. She brought many of them home.
I was saddened, but she was not. She connected the kids and their parents with death.
https://encrypted-tbn0.gstatic.com/shopping?q=tbn:ANd9GcT2fXkrQNYXRqMl5Ro4wbvrm_o_caL5pCg5MzDiwI5yxPgWejyX&usqp=CAc
MineralMan
(146,308 posts)My father, who is still alive, too, is 94. He is completely unable to admit that my mother will not "get better." That is complicating everything. Her doctor has recommended hospice care, and I have explained to my father what that means, but he interprets it as meaning she will die, and cannot accept that, despite it being the case, regardless.
They are living in an assisted living facility, which has ramped up their care of my mother almost to the point of a skilled nursing facility, so my parents can remain together.
And yet, my father is making plans for things that won't happen for a couple of years. Neither of them will still be with us in a couple of years, or even a year, I'm guessing.
Last time I was out there, I made an appointment for a consultation with their primary care physician and we talked for about half an hour. He keeps my mother out of pain and deals with my father as best he can, but he's frustrated with my dad's inability to accept the reality of the situation.
They started hospice care within the assisted living facility, but my father felt there weren't doing anything to help her "get better," and canceled their services.
My dad's a stubborn old coot and always has been, but he will not get into a discussion about the situation with me, his 74-year-old son. So, it is a frustrating, complicated situation.
There is no easy way for people of his generation, I think.
Everyman Jackal
(271 posts)if you ask, the doctor will remove the safety on the morphine drip which will allow you to give your spouse as much morphine as is needed to keep him or her pain-free.
lpbk2713
(42,757 posts)I'll try to remember it. And I'll tell my loved ones don't worry about them leaving the
room. I might be unable to communicate and that might be what I was waiting for.