Hospice vs Traditional Medicine
Jul 6 2011 in Blogs, Caring for Parents, Jo's Blog, Polls, Share with Us by Jo
Reading Shandi’s posts I couldn’t help but notice this one particular line:
“Hospice amazing, the medical support I’ve looked for all year”
I’ve not experienced hospice directly but the overwhelming majority of accounts that I read and hear say the same thing. It begs the question, Why? Is it that with hospice finally comes a much longed for focus more on the patient and family and away from the disease?
What is it that Hospice gets right that traditional medicine seems to be missing?
G-J said on July 6, 2011
Been there with my Dad. Hospice staff in my experience were not watching the clock. They stayed until the situation was resolved or the questions answered. They were focused on the person, the patient, not the illness.
AP2 said on July 6, 2011
Hospice listens to the patient and focuses purely on making them comfortable — and they are EXPERTS at pain relief. There is an entire care team devoted to the patient and the family. Hospice also lets the caregiver once again become a daughter or son or spouse (or any other relationship) rather than a full-time nurse. Hospice helps carry the burden and, as a result, the remaining time is happier and more rewarding.
Denise said on July 6, 2011
Hi–G-J hit the nail on the head, I think. I also believe (and this is just my personal belief) that we all live a healthier life (including at life’s end) when we focus on what’s going well.
Because the focus is so much on comfort, Hospice keeps the focus on what’s going well. And, when the focus moves from cure to comfort, so much can go well. And, isn’t the time at end of life the best time for all to go well?
Jo, your post alluded to something else. When we let go and live rather than hold on to the fear of dying, we all do much better. I think our traditional medicine has an innate fear of death, which is why traditional medicine does way too much to keep us living. We live better, including at the very end, when we let go of the fear. I think Hospice teaches us that.
The New Yorker published a fascinating article written by a physician who shows us how hard it is for traditional medicine to let go. You can read more about the article here: http://www.caregiving.com/2010/08/when-dying-to-live-makes-dying-horrible/
Bette said on July 6, 2011
A recent conversation, spurred this question for me: Why does death have to be about a back door?
Death can be a very difficult topic – it can be uncomfortable, and the conversation and emotions are often covered up or distracted from.
It seems as though Hospice has the resources, support and comfort necessary to help move the door for the family and for the patient – maybe not to the front, but even to the side can be very reassuring and comforting.
Unit Known as Shandi said on July 6, 2011
I’ve posted a lot this year about how frustrated I’ve been when the medical profession sees my Mom’s diagnosis of dementia and writes her off, when I’ve known every time that the hallucinations and paranoia she was experiencing have been a UTI. Trying to get medical help for her has been one of the most difficult challenges in my life…and I’m pretty persistent (okay, so I’m “that daughter” in all of Mom’s charts…they probably have a warning label just for me). This has not been the case with Hospice. They are listening to me and our family, and caring about her as a whole person. They are also supporting and validating me as her daughter and caregiver. The difference is night and day. I don’t understand! Why, when a person is fighting to live and be as healthy as possible, does the medical profession make it next to impossible? What about seniors that don’t have us (meaning the advocates on caregiving.com) to fight for their medical care? I could go on all day…
It was Denise and Donna W. that encouraged me to get Hospice involved. What perfect timing. If they hadn’t started on Friday, we would have had to go to the ER on 4th of July weekend. What a nightmare that would have been.
Bette said on July 6, 2011
Hi Shandi,
It’s wonderful that Hospice can address the needs your mom has as they come, and make everyone feel important. I know what you mean as far as the medical profession and dementia. I’m scared for the elderly that do not have advocates, or they do, and the advocates don’t have a “warning label”. – I want to earn that label one day (:
Your perseverance continues to be so inspiring. You keep right on doing what you do.
Take Care.
Cynthia Williams said on July 8, 2011
I can agree that the fight to be heard to keep the loved one healthy is talking to the wind. After 14 years with my husband, homehealth is a waste of time for what it does. My husband half bathes himself while the aide sits and watches tv. She finishes the bath. We have two agencies, VA and Local homehealth agency. The person does the above, the Monday, Thurs, Friday person does the same but adds emptying the trash and sweeping around his bed and mopping, if you can call it that with a dirty mop and wipe around the room never under or moving anything and the kitchen, but does not wash dishes, the living room, just the exposed floor. Will take dishes to the sink and place on cabinet next to the sink. Will take dirty linen to the washer, it being open and waiting and drops them on the floor or basket.
I am tired of the traffic but must accept them to maintain his service.
Hospice comes with the acceptance that this is nearing the end. Been there, but you can obtain the same peacefulness when the family accepts the fact that life is about gone. Ask yourselves, is it our desire to keep that person for our own selfishness, When we think about what that person wants, to continue to suffer or to go on at this point, it is easier to let go.
When there is hope for change, by all means continue to fight at all cost. You won’t regret it.
Trish said on July 7, 2011
I agree with the others here that Hospice focuses on keeping the person comfortable and addresses all their needs no matter how long it may take. It was so helpful to have them available when my mom was ill and they were a great comfort to her and kept her free from pain.
Another point is I have not found Hospice to be dismissive. Medical professionals can be very dismissive and I’m not sure if it’s because they don’t have time to invest fully in person or what. It’s a mystery to me.
Cynthia Williams said on July 8, 2011
They are more concerned about the clock. About the bottom line of their report. No the patient is just a number to the medical field. I have actually wanted to go back and blow up something with some of the medical professionals I have encountered with my husband. I went before the head of therapy department because I was told that if my husband’s legs were not exercised, they would freeze up and would have to be broken to reset if atrophy set in. The department head looked at him and told us it would be a waste of the hospital’s money to give him therapy because he will never get out of his chair. My dismay was I had been doing it for two years with no assistance, handling him, turning him, catherizing him, doing his bowel, feeding, bathing him and I had a heart attack. I was warned not to continue to do this and was seeking help and that was my answer.
The Unit Known as Shandi said on July 9, 2011
We’ve had the same nurse for the past two days (before that, every day was different), and she’s been amazing. She has helped us all to let go, and let it be okay. We’re still doing all we can for Mom to live (short of hospitalization, which won’t happen because Mom clearly stated it’s not what she wants a few weeks ago), but are prepared to accept that she is just too weak to continue. It hasn’t been about me not being ready to let go, it has been about Mom wanting to live. She doesn’t know how to quit. It’s just not in her vocabulary! So many people have told me that she has no quality of life the past few years, but I hope the photos have shown her love of family and of living. I do think she’s spending more time and energy now with the family that has gone before. We are having some pretty profound moments right now, even though Mom is non-verbal.