Where Is The Hospice I Know and Love?

The following excerpt is from an email I received from a friend whose father is on hospice care. This evoked so many emotions in me as I read it: Anger, sadness, frustration, followed by, “I have to write a blog about this.”

Dear Barbara, “ . . . comfort care only now, which is challenging too. Feels so out of control not knowing what’s happening. We’re so used to labs, etc. My best guess right now is that a kidney stent that was placed a couple of weeks ago is failing and causing major increase in pain. But, there’s no one to talk to about it. I guess that’s how this works but it’s hard . . . Hospice has been good in some ways, but also kind of unreliable, so that’s hard. No shows, not calling, forgetting to order meds they said were ordered, dropping meds off the med list accidentally. Feels like we have to to watch everything closely. Even the pill box was filled wrong twice. Sorry... I’m venting. I’ll stop now."

Where is the hospice that I know and love? Where is the hospice philosophy and reputation that many of us work so hard to provide? What is happening to Hospice? I am not over reacting to one incident. I get emails like this all too frequently.

Comments in this letter which cause concern include: “Not knowing what is happening”, “there is no one to talk to”, "lack of pain management", “unreliable”, “feels like we have to watch everything closely”. These aspects of hospice care are so important I will address each individually.

“Not knowing what is happening”: It is our job as hospice providers to educate our family in everything that relates to their loved one’s approaching death. Educate about the signs of approaching death, about the disease progress, about comfort management, nutrition and not eating, about hydration, about skin care--educate, educate, educate!

“There is no one to talk to”: Hospice is suppose to be one big ear. We listen, we guide, we support. We may not have answers but we listen. We encourage questions. We encourage conversation. We act like we have all the time in the world to be of assistance--even when we don’t.

“Pain”: We are back to education again. She is having to guess about something that hospice could be explaining with various possibilities and how Hospice will address them.

“Unreliable”: Really? A family with a loved one on Hospice is under such stress. So much in their life is “unreliable” (disease progression, emotions, uncertainty of almost everything) that for hospice to add to that stress is beyond unacceptable. Yes, mistakes happen, occasionally being the operative word here, not in the pattern described above. With all the woman is experiencing of course she feels she “has to watch everything closely”. She has invited strangers into her house and life at a time when she is in turmoil, experiencing fear about the unfolding experience and is now dealing with what appears as incompetence. Hospice is adding to her burden rather than relieving some of the stressors.

Hospice can not take the experience and sadness of a loved one dying away. Our goal is to help the family create a sacred experience, to help their loved one have as gentle a death as possible, and when we have done our job well the family will have that sacred memory.

It is sad for me to say that too many families (and one is too many) are not having that fulfilled experience that leads to a sacred memory.

If you’re not getting the Hospice care you need, look to see if there is another Hospice available in your area.

If you are a Hospice professional, take good care of yourself. Make sure that you are able to give the best that Hospice can provide.

Something More about... Where Is The Hospice I Know and Love?

Every family with a loved one in hospice needs to read Gone From My Sight, Signs of Approaching Death and The Eleventh Hour. They need the support and education that the books supply for support when the hospice nurses aren't with the family. It will help the nurses for the families to know that what is happening with their loved one and what to expect. This knowledge will take pressure off the staff because an educated family is a more relaxed family. If the family isn't able to sit and read due to anxiety, fear or depression, watching NEW RULES for End Of Life Care soon after the patient arrives in hospice will help immensely. It will take 25 minutes to watch and everyone will be on the same page. And to my dear hospice nurses, please watch Care for the Caregiver. I made that short film to support you all.

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Hi Kath, thank you so much for sharing. I am saddened to hear of your difficult, below standard experience with a hospice. Unfortunately there are agencies that are more interested in the financial gains than the care provided. I hope you contacted the hospice administrator and talked of your concerns. If they don’t know there is a problem they don’t have the opportunity to fix it. My blessings are with you. Barbara


I was a hospice nurse many years ago and believed so much that there would be benefit – not perfection, but definitely benefit and compassionate help. My experience with my husbands care was shocking- we were able to keep him at home, but without my background and confidence in caring for him, it would have been a nightmare. Revolving door personnel, non hospice nurses who needed me to calm them, no emotional support, no response in emergency situation, no chaplain in spite of numerous requests, criticism of me by supervisor regarding food and fluids – I could go on and on, but you get the idea. In the end I was told I needed to “detach” more. Seriously?!? Main reason I can see – profit motive – south Florida elderly population – dollar signs. Just heartbreaking 💔
Gratitude and love to the caregivers who understand and are committed to the essence of end of life compassionate care!!


I am happy to find this blog. I am a RN new to hospice from a case manager stand point. I have years of nursing experience also in home care. I am passionate about this work a put my whole heart into everything I do. I recently had a family ask for another nurse this has never to me before and my patients usually say they are very happy with my care. Any words of wisdom or thoughts ? I never want a patient and their family to feel their needs are not being met?


Hi Amy, what is the saying “you can please some of the people some of the time but not all the people all the time” ( or something like that) Examine your interactions with the family that requested another nurse. Look at yourself honestly. Could you have done anything differently or better? We always do the best we can in any situation. None of us sets out to to a poor job BUT some days are more challenging than others and we can be less patient, less friendly, not our best selves. With self examination we can learn from our findings. With the self examination done put it behind you and move on. Also sometimes personalities just don’t mesh. Your years of nursing experience without difficulty tells me there was probably just a personality disconnect. A question: do you think your being new to hospice showed as uncertainty and prompted a change request?Amy, thank you for reaching out to me. My blessings are with you as you continue doing this special work for those approaching the end of their life. Barbara

Susan Barber

THANK YOU!!!! I can’t tell you how often as a Community Education Manager, I hear these kinds of comment. I worked for one of those places, it was horrible for patient’s, for their families and for the staff.

My message is: Educate yourself about hospice before you need it.
Here are some things to consider
1. Locally founded, locally staffed and community bound hospices are often the best choice
 2. Not all hospices are created equal

3. Profit vs person is a real and often dangerous reality now

4. Making a decision after getting an unexpected and awful prognosis is NOT the time to navigate this territory.

5. Look online, see what people say about your local hospices, talk to friends, family, neighbors, see what their experiences are

6. Make good use of the hospice volunteers, who often have lots of time to spend

7. Fire a hospice that doesn’t meet your family’s needs.

8. Hospice has already been paid for by your contributions to Medicare

9. Spend at least as much time selecting your hospice as you might your next car

10. Choose hospice as early as possible, when you or your loved one isn’t actively dying.

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