June 26 2018
Written By
Barbara Karnes
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WHY NOT HOSPICE? A Reluctance To Refer

WHY NOT HOSPICE?  A Reluctance To Refer


Shirley Carter - July 13 2018

My dad was also on hospice from heart failure,seizures, strokes and dementia, I saw the signs of a slow death but didn’t face it until hospice said he’s slowly passing,hospice did all they could to help me get through this,till this day my pain from my dad’s passing in Feb.of this year is hard for me to cope on my daily activities. Seeing him in pain,not knowing why,but they told me what the pains were.I pray that everyone that has a love one on hospice love them while u can.My dad was on hospice one month and he passed away.

Joanne Naumer - July 01 2018

My husband has Parkinson’s and afib. The bottom line for me was that I couldn’t care for him at home so if Hospice hadn’t accepted him he would be in a nursing home strapped in a wheel chair during the day and lonely and scared each night. I would be in the process of losing our home to pay for his care. Home hospice is very hard work but we can still have small joys together, share a cup of tea together and hold hands, etc. Without the support of our hospice team this part of his life would be horrible for both of us!

Barbara - June 30 2018

Ingrid and Kathy, I don’t think we can understand the term “withheld all medications” because we don’t know the particulars of Kathy’s mother’s illness. Yes, I agree with you Ingrid , hospice’s job is to evaluate a patient’s medications and eliminate those that are related to treatment and provide those that give comfort. What Kathy’s note tells me is her mother understood she was dying, that she died in peace and comfortable while her family participated and loved her through it.

Ingrid Gordon - June 30 2018

Hi Kathy,
During my 15 years in hospice we never just “withheld meds” We looked at the medications and stopped things that had limited benefit such as statins, vitamins etc but typically kept meds related to the diagnosis (is our cardiac its still got their digoxin, lisinopril etc) because they also helped symptoms We withheld/stopped meds when the person could no longer swallow. We also used comfort meds like opioids and anti-anxiety meds and bowel meds. Simply going in and withholding meds makes it look like you are trying to hasten death. Hospice does have general customs and guidelines but much is done on a case by case basis.

Kathy Wallace - June 30 2018

My mother was diagnosed at the age of 85 with small cell lung cancer. She had lost dad a year earlier, me and my two sisters were with her when she got her diagnosis. The oncologist plainly stated that he could not make the quality of the rest of her life better, nor could he prolong it. She told us she wanted to go home. This woman my mother was active, she cooked, cleaned herself, yet she was ready to go. My oldest sister, and myself are RNs my little sister a teacher.
She went into hospice immediately they had a hospital bed delivered. All of her medications were withheld. For five days she was up and down by herself, we stayed with her in shifts. She ate what she wanted, but that sixth,seventh day started going down hill, understandably without her meds. She was ready, she wanted to see dad.
On the 12th day after her diagnosis she died peacefully painfree thanks to hospice and our diligence. We got to spend those days with mom, her grandkids got to spend precious time with her before she became unconscious. One of the things they did we all did was talking, singing, praying with her, because they hear things before they die. I would definitely say to recommend hospice for end of life. Great support for family. Everyone deserves this wonderful help in this difficult time.

Barbara - June 28 2018

Hi Rachael, thank you the positive comments about my materials. To address your mention of physician lack of talking to their patients about end of life and making timely hospice referrals—I have been trying all the years of my career in end of life (37 years) to get physicians to accept that everybody dies. At some point the body dies and as that point arrives it is in the best interest of the patient to support their body with comfort measures rather than assault it with unhelpful procedures, medications, and treatment. Even these years later with Palliative Care physicians (that we didn’t have earlier) the general physician population does not recognize the benefits of hospice care. Until medical schools teach end of life communication skills, signs of approaching death, and comfort management as legitimate, required courses the old concept of death is the enemy to be fought at all times and what is learned from one, even when failed, helps another will prevail. Informed choice is the word that comes to my mine to describe what seems to be lacking in our medical environment.

Rachael - June 28 2018

Barbara has been a go to resource for me for the 6 years I have been providing care. I often encourage families to follow her on facebook or other social media sites.
As a hospice nurse, I sometimes find the families are much more accepting than the physicians, do you have a version with information for the physician explaining to him or her it is ok to refer sooner than the 11th hour.
All too many times, the family are too shocked and do not accept when death is "that close’ and we find no one receives the full benefit.
I have tried asking a few physicians why they refer so late and no one has been able to give a satisfactory reason. I often wonder if it goes against their oath of saving lives. Only a few doctors accept the hospice philosophy and I have learned to appreciate them and will dedicate myself to educating the rest.

Thank you Barbara, for providing the knowledge and wisdom to make our jobs that much easier

Richard Balsomico - June 28 2018

My father had dementia and was dying but we never realized it until we got hospice care and I got your book “Gone from My Sight” everything was right there what he was going through. I must have reread it a 100 times.

anne - June 28 2018

I wish I had known about ‘Gone From My Sight’ months before we received the book- which was only 3 days before my father died. The book described his slow decent- it was as if you watched him and wrote it.
It helped me grasp that we had little time left and I will forever be thankful for that.

Hospice nurses are angels among us.

Vickie Cram - June 28 2018

I am thankful for hospice. I was able to spend my every last second with my husband as he passed. I was able to care for him as I had always planned for when the time came. The hospice..( everyone)… Were great. I can’t praise them enough. Now even 4 months later I hear from them. And the mortuary/ cremation. Great people. Careful, understanding. And got a another card from them last month. If one is able to care for their loved one at home with hospice help. They must take advantage.

Nancy Buckingham - June 28 2018

I would recommend hospice, my husband was on hospice for 11 1/2 months. He went to his eternal home May 14th of this year. I am having a difficult time since my entire life was all about him. I miss him, I hurt and I know I cry a lot… however while he was here the hospice company I chose was awesome

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