Most people who read this blog, based on your comments, think palliative care is a good thing. A resource to help. An extra layer of support for those with serious illness. Oftentimes however, we find when we go into patients rooms, we are met with resistance or fear. We can be thought of us as "the bearers of doom and gloom", the ones who "take away hope" for the patient who "is a fighter and is not giving up".
Tonight I present this very humorous, absolutely spot on, illustration of just exactly what I mean. Created by Jared Rubenstein, MD.
There are days when we have to work really hard to be helpful. To try to be sure people are staying comfortable as they are maintaining hope and continuing to fight. Or when they recognize they want someone to talk to about what they will do if things aren't going the way they want them to.
In the last month I recall vividly the adult son of an octogenarian bristling at the thought that we would be involved in the care of his father who had always been in robust health... and the patient telling us after our meeting, how helpful it had been to talk with us so he could ask the hard questions, about what his death might be like, and what could be done to keep him comfortable whenever he was dying.
Do you think that the word, palliative, may be part of the “end of life” discussion confusion? I’ve had friends who chased “cure” for end stage cancers or copd and others who sought only pain management. This is within a team approach to the disease. Does it depend on the family and the patient? Thanks for doing this writing.
Posted by: Susan Bjerke | 04/02/2019 at 10:41 PM
Having gone thru this with my dad i am now more aware of the terms and how helpful our hospice team was. thank you for doing what you do. it takes a special person to be able to be not only around but involved with the family and patient that is going through the end of life process.
Posted by: stacey | 04/03/2019 at 06:23 AM
Not the easiest line of work for sure. It’s good that you are someone who feeds your spirit well, which must help you a lot. The video is great.
Posted by: Chris oliveira | 04/03/2019 at 07:53 AM
Susan: "Hospice" used to be the word that scared people. Now "palliative care" is. Really I just think it's an understanding that life will end, and we have no control over that, is what some people don't want to face. This whole notion that "talking openly about what could happen and how to prepare for it" will somehow take away hope is ludicrous. Mentioning the word death doesn't make it happen. Our bodies will shut down from disease in their own time. All that said, we do also encounter some incredibly resilient people who are comfortable with their mortality and ask to see us. They understand that our role is to help them live as well as they can, for as long as they can, and be there to promote a peaceful, non-chaotic end.
Posted by: carol | 04/03/2019 at 05:00 PM
Stacey: thank you for adding to this conversation. Your personal experiences with hospice, and talking openly about what they did and did not do, will help others understand how they can be helpful and perhaps be less afraid to use their services.
Posted by: carol | 04/03/2019 at 05:02 PM
I FEEL HAPPY FOR THE PATIENTS AND FAMILIES THAT HAVE YOU! Such an important job!
Posted by: jacki long | 04/04/2019 at 08:19 PM
I think what you do is so important! Both my father and father-in-law passed away last year. My father had visiting hospice for a number of months, and my FIL was in a hospice facility for the last week of his life. Everyone involved was so caring, supportive and helpful - not just for our fathers but for both families. It would have been a much more difficult time without them. And they have continued to stay in touch, to be sure if we need additional emotional support we know it's available. Bless you and all in this field.
Posted by: Terri W. | 04/05/2019 at 12:24 AM
Thank you and your colleagues for all you do to help people.
I wonder if it's the same people who don't want their kids to have sex education ("because they'll be more likely to have sex") that don't want to hear about death.....
Posted by: Vicki in Michigan | 04/06/2019 at 03:48 PM
Vicki!!!! Absolutely! You hit the nail on the head!!
Posted by: Carol | 04/06/2019 at 04:53 PM
Such important work. Loved the video.
Posted by: J. Hyde | 04/06/2019 at 07:19 PM
Vicki said exactly what I was thinking....👌🏽 And the video was just terrific, thanks! xox
Posted by: Sharron Carleton | 04/06/2019 at 10:48 PM