Tuesday, July 9, 2013

Do You Know?: 5 Things I Learned From Going Off Hospice

About a year ago, Mom went on hospice care and I wrote about the assumptions people make when you say someone is in hospice. At that time, I knew Mom had time left with us, but I did not really think we had another year together. I am glad we have had so much time and it looks like we will continue to. However, this means that she has been taken off of hospice and I wanted to share with you 5 things I have learned from this experience.

Technically to qualify for hospice, the doctors have to evaluate you and believe that you have six months or less to live. You are reevaluated every three months in order to get "recertified" to remain on hospice. However, to put it bluntly, if you are not dying fast enough, you get taken off hospice. This means that even though your loved one is dying from their illness and you can not care for them alone, you now loose a lot of the help that allowed you to care for your loved one 24 hours a day.
  1. Do you know all the things you loose from going off of hospice? You no longer have aids to give baths, a nurse on-call when emergencies arise, a nurse who checks for changes in the patient regularly. You loose all the supplies like the diapers, bed pads, wheelchair, mouth swabs, pillows, wipes, ointment, and more. This makes a big difference for two reasons, one is that some of these items are hard to find in the regular world, and second the cost for these items is outrageous and not covered by Medicare anymore once you go off of hospice.

  2. Do you know how hard it is to find real adult diapers? Not Depends or something like that. Adult diapers that actually hold full amounts of liquid and solids, that open up like a diaper, and are made of materials that do not induce chafing and bed sores. It is really hard. Even the medical supply stores do not have the hospital grade undergarments needed for bed-bound people. It took weeks to find these for Mom.   

  3. Do you know that equipment that was being paid for by Medicare through hospice does not stay with you when you go out of hospice, such as the Broda chair Mom had? This means in a few days time we had no chair for Mom to transfer to that was safe for her. A regular wheelchair is not appropriate for someone like Mom. The Broda chair Mom had was being paid for through hospice, it was now used, but we could not just buy that one for a discount or anything, we would have to buy a new Broda chair for $5,000. Dad found a used, slightly adjustable wheelchair for Mom like this one but we quickly found out that you can't just put anyone into any wheelchair, it needs to fit them properly. Skin breakdown and bed sores are very common for patients like Mom but leading up to this time she had only one little spot that looked irritated which we quickly fixed. As soon as we had to start putting Mom in wheelchairs that were not the right fit for her, she started getting skin breakdown. It took over a month of research and calling around to find out how we could actually get Mom a proper wheelchair through insurance because they are too expensive out of pocket. 

  4. Do you know that most home health agencies do not employ caregivers who are able to help with things like bathing a patient or caregivers who know how to use equipment like a Hoyer lift or who have training in medical care at all? Hospice comes in and does this but once hospice leaves it is very hard to find enough replacement caregivers who can do more of the personal and medical care. 

  5. Do you know that no matter who good your care coordination team is that the medical system is so convoluted it can be nearly impossible to figure out how to navigate the system to actually get what your loved one needs? My Dad is a doctor, we have friends in the medical field, we have Mom's doctors, we know many people who work in assisted living facilities and nursing homes, we even have Care Coordinators, and still it has been extremely difficult to get Mom what she needs. Hospice knows how to get through the hospice billing system to get supplies but once you are out of that, the same rules no longer apply and they can't advise you on how to get what you need. Nursing homes and living facilities get their supplies through other systems and can't advise on how to get help for someone living at home. None of the systems overlap and so even the best people have a hard time figuring out how to help.
Basically, the whole system is frustrating and it is very easy to get angry. Not only with the system but sometimes with the people helping you because you expect someone to know how to navigate the system. In reality though, our medical care system is so confusing that few people know how to work with it in any given special situation. So, be patient and compassionate with each other as you work to care for your loved one.

What has been your experience with going from being in hospice to out?


Rev. Katie


  1. Mom's Hospice was an eye-opener -- your writing made me appreciate it even more.
    My sister-the-nurse communicated the medical needs/services well. My favorite Hospice professional was the social worker -- I'm retired from 40 years of social work myself -- & I NEEDED a lot of help myself.

    Now I'm looking for grief therapy work -- hmm. . Sandy King created Working Through Life's Losses in 1996.

    Hmm again. I've moved 25 miles away from Rocky River, but there's enough daylight to drive home safely after class. Are you meeting this summer? I NEED Zentangles & writing insight & the discipline of classroom exercises!

    Warm regards,
    Karen HIATT

    PS -- thx for sharing your Hospice learning. I didn't think this last year's caring for Mom could get worse -- without Hospice I would have had a really bad time physically & emotionally. Perspective. Hindsight. Time to write thank you notes!

  2. I recently came across your blog and have been reading along.I'm impressed. You're truly well informed and very intelligent. You wrote something that people could understand and made the subject intriguing for everyone. I'm saving this for future use.

  3. This is a wonderful article about what happens when patients are off hospice. It can be a mixed blessing to know you have your loved one for a little while longer, mixed in with the guilt of feeling hassled by all the stuff that now has to be done by the caregiver, when Hospice used to take care of that for you. Many thanks!

  4. Holy cow! I am completely devastated that hospice is discharging my mom. Her health is actually worse than when she started on hospice six months ago. However, she has stopped declining/stabilized.

    How long do Alzheimer's patients actually stabilize? My mom no longer remembers the house she used to live in for 40 years and she is incontinent. Some days she can walk; others she can't.

    I believe she stabilized because of the care that hospice provided, but when they stop the nursing visits, remove her hospital bed, wheelchair, diapers, and shift her meds back to her old primary care physician, I think she will begin to decline again.

    How long was it before your mom came back on to hospice, or did she? I can't make it without hospice. I can't go back to the midnight phone calls from the assisted living place and the useless trips to the doctor that do nothing but wipe out my mom. However, the doctor has to see her to prescribe meds and he won't come to her. I have until Thursday to work out the details. YIKES!!!

    1. Hi Luanne,
      Sorry to hear you are going through the this! My mom was taken on and off hospice a few times and she did get worse every time with less care. Then she got into the Navigator program which is run by hospice but you are not on full hospice. You still get the same nurse checking in and some other services. See if your hospice has something like that. It is very expensive to have to pay for all the stuff you used to get on hospice though. My mom lives for thre more years after this blog post. I hope they have an intermediate program for her so you can maintain some quality of care.
      Rev. Katie