“TAKING NO ACTION, IS AN ACTION IN AND OF ITSELF”
Many no doubt know this. I learned it in my counseling courses, but didn’t fully understand the implications until several years into my counseling career. Then–to my surprise much later on–I learned those who were entrusted with Dad’s care didn’t completely understand it. Yet its implications–for helping parents age well until the end of life, and for helping ensure their children have no regrets– can be profound.
This morning, while helping a friend ready her manuscript for a literary agent, I mentioned today’s blog topic–to which she responded: “I can’t even talk about it. They called hospice too late for my mother…I can’t even think about it…” Obviously her family didn’t understand…early enough.
Calling Hospice Doesn’t Guarantee Death is Imminent
Carol Bursack has written a number of substantive posts about hospice. In one, “Daughter asks: When should we call hospice?” Carol calls attention to the fact that “Your mom’s health could improve under hospice care, and then she would go off of the program. This happens more than people realize.” (She reiterates this, providing links to additional relevant information at http://www.agingcare.com/Articles/When-to-Call-Hospice-and-How-to-Find-One-Near-You-96209.htm).
“This happens more than people realize.” Most people think “Hospice–impending death.” Wrong– more times than we might think.
The false imminent-death-sentence feeling creates the roadblock, the erroneous worry about loss of hope, the feeling of being responsible for communicating a death sentence to a loved one. And how awful is that! Do we have the courage to utter the word “hospice” to a parent–as a suggestion or a recommendation… or a fait accompli? Or is our action, inaction–because we just can’t face it.
As with other things in life, asking ourselves “what’s the goal?” can clarify the action we need to take. If our goal is to help parents age well until the end, hospice should be considered when it seems a parent’s condition becomes terminal. Remember “many people get better with hospice care.” (On the other hand, calling hospice at the last minute means it’s less likely the sick person can get better and go off the program, although s/he will be kept comfortable.) A big question is:
How to Talk to Parents About Hospice
Honesty works best. Again and again it proved true during my career. But here’s the thing: it’s how you say it. Offering observations and facts–simply, objectively, and gently– lays the groundwork; as opposed to expressing your feelings. Facts are powerful. And one important fact is: health could improve under hospice care, it happens more than people realize and then they go off of the program.
Assuming parents are mentally capable, a conversation could begin something like:
Dad/Mom, I know it’s hard and you’ve been so uncomfortable lately, so I want to share some thoughts and facts and have you tell me what you think….
as opposed to
Dad/Mom I hate to see you suffering–you’ve been so uncomfortable lately–so I think we should to get help from hospice. More people than you realize improve with hospice care and then go off the program. Can we talk about it?
An RN, Experienced in Hospice, Weighs in
Tonight, at a wedding dinner, I was seated next to an RN. She has spent decades involved with hospice. She tell us–
- Many people do get better with hospice care then are “graduated” by hospice because they no longer qualify.
- Involving hospice care is not confirmation that someone is going to die within 6 months.
- It does mean terminally ill people are able to remain comfortably in their home and die in their home with special care to keep them comfortable.
- Hospice can be used by terminally-ill people who continue to go to work.
- Hospice can be covered for Medicare Part A-eligible people. *(http://www.agingcare.com/Articles/Medicare-coverage-hospice-care-142914.htm).
- Many who could, don’t avail themselves of hospice care; and often when they do, it’s at the very end because that’s when the family makes the call.
- Hospice answers calls 24/7 (many calls come in at night).
- When hospice is involved costs for medications and/or equipment needed due to the terminal health issue are covered. (Unrelated health issues aren’t).
This RN hopes to live a long life. If, however, she’s diagnosed with a terminal illness that qualifies for hospice care, she says she’ll contact hospice the moment she meets the requirements and begin preparing for what lies ahead.
*4/3/14 Note: The local Hospice says nothing about Medicare has significantly changed under Obamacare. Double-check by phoning your local Hospice and ask if any part of Medicare Part A has changed under Obamacare.
Related: Help Aging Parent–Hospice. Why Wait to Call?