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.
24 comments
Hi Anne, we kindred spirits have to stick together. I am finding there are a lot of us who see the not so positive changes that have occurred in our beloved hospice. Our job is to hold the Light so it won’t be dimmed forever. Blessings to you in the work you are doing. Keep doing it. Barbara
Thank you so much for this article. I have been disappointed also with the decline in the care of Hospice patients and the apathy shown by Hospice companies and the nurses working with said companies. As an RN of 33+ years with Hospice experience I also hear and am saddened by stories I hear from patients and families. It seems that nurses are seeking out Hospice employment because it’s easier than working in a hospital…but so many of these nurses do not realize that taking care of patients and families in Hospice settings is not an 8 hour a day job. It needs to permeate your soul so these patients and families can get the very best of what you have to give. I am glad (but sorrowful also ) that I am not the only one seeing these changes. You have to put your heart into taking care of people in some of the most traumatic periods of their lives. Thank you for allowing me to vent to someone I know understands..
I experienced some of this from another state while my mother was in her last days. When I got the call to come, I immediately called the nursing home, and they gave me no comfort whatsoever. I understand that hospice in the facility where she was staying was less than helpful. When I got there (too late, unfortunately), my brother told me that he had been given no choice of a hospice; someone was called in, and that was that! It was a BUSINESS they were in; not the loving, caring hospice setting that Barbara condones. Too sad. Surely, we can do better than this.
Hi Judy, I am sorry you had an unpleasant, non helpful hospice experience. It is challenging enough for us when someone we care about is dying without having the added burden of not receiving the care and support that is promoted. I am pleased you told the agency of their failings. Of course how someone responds is not always as we imagined. If you still feel unheard you can file a complaint at Medicare.gov or tell a Medicare beneficiary ombudsman that you would like to file a complaint. Again I am sorry for your experience. Try to remember the good moments with your loved one. There is your treasure. Blessings! Barbara
I appreciate that you have raised this subject, Barbara. For many years, I never heard a negative word about hospice care from consumers. The reviews were always glowing. I worked as a hospice nurse “back in the day” and considered the work sacred. Like so many things in health “care”, hospice’s image has deteriorated in recent years. As the admin for a large Facebook support group for dementia caregivers, I hear more and more sad tales similar to the one you relay here. The pressure to do more with less has taken a toll on professional caregivers. Unscrupulous investors have spotted hospice as a potential lucrative endeavor. Each new case of fraud discovered means more regulation and less time for bedside care. Electronic health records have been both a blessing and a curse. I share your sadness to see the changes in the quality of the care families can expect. Thankfully, while the incidence of poor care is increasing, it still remains very much the exception rather than the rule.
Leave a comment