My father has Parkinson’s and is suffering terribly from anxiety and panic attacks but hospice has not been responsive. We think his Parkinson’s medication needs to be adjusted but his Parkinson’s doctor says we have to go through hospice. Hospice tells us just keep giving him Ativan, Haldol, and
morphine. (I just learned from watching a podcast interview with you, Dr. Kluger, that he should not have Haldol. When my mother told this to hospice they told her to stay off the Internet.) My father has a bad valve in his heart and we are afraid that he is going to have a heart attack if he does not get immediate relief. He has been getting worse the last couple of days and he just keeps saying, “Help me. Help me.” I am considering pulling him out of hospice to try to get him the expert help that he needs. Is this a horrible idea?
Hello L, I’m very sorry to hear about what you and your father are going through. I think your question and experience are incredibly important for others to hear about and touch on some aspects of hospice that many people don’t like to talk about. Before talking about your options, it may be helpful to put this problem in perspective.
Although hospice can be an incredibly beneficial service for patients with terminal illnesses and their families it is not a positive experience for everyone with some studies suggesting about 10% of patients have a bad experience. On the positive side, hospice provides expert symptom management, emotional and spiritual support, an alternative to calling 911, and guidance through one of the toughest parts of life’s journey. On the negative side, hospice can fall short in any and all of these areas, and in some cases, may add to the burden and suffering of patients and families.
There are a few factors that lead to bad hospice experiences. First, not all hospices are created equal. Hospices differ in some of the services they provide, what medications they cover, and their approach to care. There is evidence that for-profit and chain hospices have lower satisfaction ratings than non-profit hospices. A recent New York Times article suggested that some intentionally sacrifice care for profit (but also see counterpoint from Hospice News).
Second, the key ingredient to good hospice care, like most healthcare, is people. The hospice medical director sets a general tone for the care provided within a hospice. The nurse is the most important person on the team for day-to-day care with good nurses creating a feeling of security and less-than-good nurses adding to feelings of helplessness and struggle.
Lastly, all hospices have to some extent been affected by COVID. I’ve worked with many hospices recently that are doing their best but simply don’t have the workforce to provide care at the level they’d like to.
With these factors in mind, here are my suggestions for dealing with disappointing hospice care:
You have the right to switch hospices: If there are other hospices serving your area, it may be worth your while to look at their website and have them come out for an interview to see if they may be a better match. This is not always possible as some parts of the country, mainly rural areas, often only have a single hospice.
You have the right to choose your hospice attending: The hospice attending is the person who leads medical decisions on hospice. Often this defaults to the hospice’s medical director but you have the right for this to be a doctor of your choosing, including your primary care physician or neurologist. For people with a complex and serious diagnosis (like Parkinson’s), I advise that your specialist serves as an attending (if they are willing), or at minimum stay involved as a consultant. While some doctors don’t listen to patients, almost all will listen to another doctor (particularly one who has training that they don’t).
You have the right to come off of hospice at any time: If hospice truly is not working for you, and doesn’t seem to be a match with your current goals, you can stop it and go back to your prior care. If you go this route, be clear with your healthcare team about what your goals are (e.g. I still don’t want to go to the hospital unless it will help with comfort) and work with them to get other support outside of hospice.
You have the right to file a complaint about the care you received: If you are working with a large hospice, you can start by contacting the leadership of that hospice. If you’re lucky, they will take your complaint seriously and assign you a new team. If this doesn’t work, you can file a complaint with the appropriate authorities in your state. While this may not lead to immediate results, it does send a message and, if others also complain, may lead to eventual action.
You can share your story and advocate for better hospice care: Your story is a tragic reminder that although hospice is important and helps many patients, it is not infallible. I think many have a fear that if we critique hospice we are aligning ourselves with critics who equate hospice and end-of-life care with death panels. All of us—patients, families, healthcare providers, researchers, and advocates—can play a role in both supporting AND improving hospice.