Even for physicians, hospice can be a hard thing to understand. Therefore, there are many myths and misunderstandings about what hospice is. Let’s bring up the conversation and debunk some of these myths.
#1. All treatment stops once a patient is enrolled in hospice.
We never want to use the language of “stopping care,” as patients never stop being cared for. The goals shift to a palliative manner prioritizing quality over quantity and comfort over cure, but this does not mean care stops. For many, there will be little to no change in medication. For example, heart failure patients can continue nearly all their medications. Not managing volume status would result in worsening edema, which could cause pain and worsening dyspnea. That is the last thing we would want for our patients. Other examples include new infections, although treating some could be considered life-prolonging, there is yet again the idea that an untreated acute infection would potentially worsen pain, fevers, and malaise which goes against the palliative care model of keeping patients comfortable with a high quality of life.
#2. Patients die sooner on hospice.
This is not true. Many providers and family members avoid conversations about hospice and end of life due to the fear that patients will give up hope and die sooner, but there is no evidence to back this theory. In fact, there is evidence to the contrary. In a 2007 study involving nearly 5,000 patients, the data showed that patients on hospice actually lived longer. More specifically they lived significantly longer statistically, on average 29 days longer. With certain diseases, it was even longer. Heart failure patients lived almost 12 weeks longer, lung cancer almost 6 weeks longer. https://doi.org/10.1016/j.jpainsymman.2006.10.010
#3. A patient cannot be full code and be on hospice.
False, but admittedly it does create an awkward situation if the patient is imminently dying. For many, it just means some care, education, and reframing of full code versus DNR (Do Not Resuscitate) is needed through goals of care conversations. Hospice staff is well equipped with not only the training but also has more time to have these often difficult and nuanced discussions. For those who do end up having these discussions, remember to explore before advocating. In other words, as I learned during my palliative care fellowship, “inquiry before advocacy.”
#4. Hospice is a place.
This myth was born in the 70s during the HIV/AIDS epidemic when patients had nowhere to go due to the stigma of the disease. Through philanthropy, many “hospice houses” were started, especially in the inner cities, where patients could spend their remaining days. Today, hospice houses across the nation are becoming fewer and fewer as insurance companies do not reimburse for this and the philanthropy funding has dried up. Today most patients receive hospice care in their home or the place they call home (e.g., SNF/ALF, etc.). Hospital is another location you can receive hospice, but nationally we are seeing the trend of both hospice and non-hospice hospital deaths declines as patients and families are choosing to die at home.
#5. Home health is the same or close to the same thing as hospice.
This is a very common misconception. If I had my way home health would change their name to home rehab, as this is much closer to what they do. If I was a healthy person, broke my arm (probably doing something stupid), and needed physical therapy (PT), I would not be considered homebound and I would need to drive to the PT clinic. Whereas my grandma would be quite impaired, and she would likely be considered “homebound” and could get the benefit of home PT from home health. Similar concepts for occupational therapy, speech therapy, home infusions, and chronic wounds. If I had any of those I would need to drive to the clinic. Thus, the main requirement of home health is that you are homebound. The other big distinction is that it is based on goals, if you meet the goals you are off home health, if you fail to meet the goals after the designated time, there again, you are off home health. None of that is true with hospice- except if the patient appears to improve and no longer being terminally ill, they would be graduated. The other big distinction is that home health does not come with doctor supervision, whereas hospice does come with specially trained and experienced doctors. In home health, whatever doctor ordered the home health generally is managing those orders and all the care plan, thus the pages and pages of orders and care plans that doctors end up reviewing and signing.
If you have other questions about hospice, we’d be happy to answer those. Please contact us at Heart ‘n Home Hospice by clicking here and we will help dispel all myths about hospice.