Dear Barbara, When is a patient ready for hospice help and how can you differentiate the differences in care?
These are the things I look for to tell me if it is time for hospice:
1. The patient’s condition is deteriorating in spite of the treatment that is being given.
2. The patient has decided to stop treatment for the life threatening illness.
3. You look at the person and say to yourself (and we have all done this but often not wanted to admit it) this person is not going to be here next year at this time.
4. The family and/or significant others are having difficulty coping with the seriousness of their loved one’s condition.
We generally give people more time than they have. I know it is scary to think of using hospice. It says death will happen soon, but there is such guidance and support to help that at least ask for an information visit. A hospice referral is a win-win. You win if hospice says it is too soon and you are not appropriate for hospice care or you win by coming onto the hospice program and getting much needed guidance, information, and support.
Sometimes patients rally once they are with hospice care. I think it is because hospice is the expert in pain management and comfort care and brings that to the patient and family. Everybody begins to relax a little. You feel less alone, less isolated, and have more knowledge about what happens as death approaches.
I know people think of hospice as caring for those people who are dying but remember we are all dying. Hospice guides and supports people who are in the final act of living.
Your other question: What is the difference in care? I do not know what kind of other care you are referring to so I will compare home health care vs. hospice care.
The home health emphasis is on getting people better. Patients have to be unable to leave their home except to go to the doctor and they must need a skilled nurse, physical therapist or occupational therapist. If a patient has one or any of those needs then they can also have a home health aide to assist with bathing. The key is to get the patient better. Medicare and insurance will pay for the service.
Hospice care is also paid for by medicare and insurance. A patient must be certified by a physician to have six months or less to live. The hospice then provides skilled nurses, physical therapist, occupational therapist, social work services, access to a chaplain, and follow up bereavement services. It also offers intermittent volunteer services of patient sitting and companionship.
Like all services, not all hospices are created equal. Hospices are regulated by medicare and must meet certain standards BUT like everything else some are better than others and bigger is not necessarily better.
If you are not comfortable with the information you are given, ask questions, clarify. Make sure you understand what is being explained. There are no silly or stupid questions.
If you feel you are being rushed, slow everyone down. AND if you are not 99% comfortable and very pleased with the professionalism, compassion, and attention given to you and your loved one you can change hospices. Most areas have several hospices, all medicare certified. If you are not getting your needs met, sign out and find a different one.
Something more about... Do I Want Home Health Services or Hospice
When a family enrolls in hospice care and reads "Gone From My Sight" or watches "NEW RULES for End of Life Care" they recognize that their loved one has been in the dying process for months. Many people wish they had that information sooner, but now understand why mom or dad has been taking more naps and their eating habits have changed. Educate yourself.
4 comments
Hi Terry, first my apology for being slow in returning your comment, I left the country September 8 and just returned home last night. Now to your mom. When dementia is part of the disease progress it is very difficult to gauge approaching death. Dementia just doesn’t play by the rules of approaching death from disease or old age. From what you have described of your mother’s disease process I am surprised she is even on hospice—drip feeding, 10 months and now a year of hospice. To be honest she is declining too slowly (probably because of the excellent care and attention she is receiving from you) to meet the criteria for hospice. Hospice is for people with an expected six months or less of life. With dementia it isn’t until the person is not eating enough calories for maintaining the body, and artificial feeding has been rejected, that they enter a predictable dying process. You are a wonderful advocate for your mother. You are what all of us need as we live with an illness. Our healthcare system today is such that we, who are sick, need an advocate at our side. Someone who will speak for us when we can’t, listen for us when we can’t hear and comprehend and guide us through the labyrinth of illness and healthcare. Bless you for the work, care and love you are giving. Barbara
I have ordered a number of your books, and have read : GONE FROM MY SIGHT, and HOW DO I KNOW YOU? I have enjoyed reading them both.
Marie
This is great. I was having a conversation about this very thing yesterday with a lady who stooped by our office looking for information for a friend. I wish more people had a better understanding of hospice and less fear of the word hospice. As you said, we are all dying. The difference is, some have been told their death is within a certain time frame.
This is so true about hospice care, and how much they can offer. It is also true that sometimes you just have to change hospices, which I did a year ago… my mother was in a nursing facility with hospice care for 10 months, but they had a problem with ME, not her, and it became a battle at every turn. From keeping supplies in stock to caring for my mother’s personal hygiene, we had an adversarial relationship. Some of it was that I did not have sufficient information, and they never provided it, and part of it was because I was so hands on at the facility to be sure my mother was kept clean and treated well, was administered her medications consistently (mood stabilizers), and fed. With dementia, she had developed pneumonia, and then C Diff, so hospice seemed a good idea. But I continued to drip feed her (wish I had let her go, because she was ready, I think) and she rallied. At 10 months, she had a TIA, and they refused to acknowledge that, for some reason, but I insisted she needed PT, OT so she could continue to feed herself a bit, as she had been doing, although she was bed-bound, and could no longer walk. The Dr was helpful in getting her off hospice, and on limited therapy, and yet, my relationship with the facility (the nurse with hospice had taken the DON position with the facility) was so poor, because I was there every day, with mom, and made sure she was well cared for. Long story short, I moved her home, got another hospice program in place, and almost a year later, she is still doing well, however, she is slowing down. I don’t know if she even qualifies for hospice at this point, but it is a difficult call to make. They continue to certify her, and she gets meds, supplies, and hygiene assistance three times weekly. So, this article was of interest to me, about where we are, medically… hospice, or home health care? Any advice?
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