What?!? Well, I had to make it a catchy title for you to read on (I’m learning from the school of newspaper journalism) Really, are there times when hospice can do more harm than good? The brief answer is yes. Unfortunately, many physicians continue to refer to hospice when there is only days to weeks before the patient dies. The medicare hospice benefit allows physicians to refer to hospice if two doctors agree that a patient has a prognosis of 6 months or less. Our hospice has a median length of stay of less than 2 weeks!!! When a patient is on hospice for only hours to days it can sometimes be a disservice to the patient and family. Usually the patient has had a significant change in physical and mental status and further aggressive care is not indicated (it probably wasn’t indicated for months by this point, but what can I say, as doctors we just don’t give up). The doctor doesn’t want the patient to die on their watch and the hospital doesn’t want to have the death go against their mortality statistics and therefore the patient is transferred to home on hospice. At times, the fast transition from aggressive to comfort care is not fully understood by the family and they are then thrust into the caregiver role which can be completely overwhelming. They are then asked to care for their actively dying loved one even though they have no medical experience. They are asked to turn the patient every 2 hours, give medications for comfort such as morphine and lorazepam if they assess that the patient is uncomfortable. Did you catch that? They are asked to ASSESS their loved one when they don’t have the assessment skills that myself or other hospice staff have. Now, in all this, the hospice staff is doing their very best to educate, support and instruct the family how to care for their loved one, since hospice staff cannot be present 24 hours a day (there are exceptions), in a very short time frame. Usually the patient is uncomfortable and the hospice will instruct the family how to give the morphine and lorazepam (most common medications). To the family this is all a blur and the next thing they know their loved one has passed. In this scenario the hospice team has not had the chance to establish relationships and build trust. All the family or caregivers see is their loved one comes home, hospice comes in and out, morphine starts and the person passes away. Because they don’t understand their loved one would have passed at roughly the same time with or without morphine (I always reinforce that the medications are to assure comfort while the body is doing what it’s going to do), they think the morphine caused the patients death. I once had this very discussion with a nurse in a subacute care center because she felt that morphine killed her dad. She admits that he was in excruciating pain, but no matter how I tried to explain the role of morphine, she was adamant that the morphine caused her father’s death. This is the same with many caregivers, they have the power to discourage families from enrolling their loved ones on hospice, and many times they have been involved in the scenario above. So what to do? In no means am I advocating that patients should not be sent home on hospice if they are actively dying but I think someone (hopefully a Palliative Care Team) is evaluating the patient and family to make sure that hospice would be a good fit for the family at home. If it seems that the family is at high risk of being placed in a difficult situation that they will respond poorly to, a case can be made to keep the patient in the hospital on Comfort Care Protocol (there might be some push back from the hospital). In our hospital we have a Comfort Care Protocol and the doctor will fill the order and keep the patient in the hospital if the patient is too sick to be transferred. Occasionally a family will be adamant that they want their loved one to die at home even if it means risking their death en route to home. Other options include transferring a patient to a Skilled Nursing Facility or Board and Care on hospice care which allows the family to be family and others to provide the hands on care. Of course, if it were up to those of us in the hospice field we would prefer months of rapport building, education and interdisciplinary support that so many families miss out on when they are referred too late. In the cases of very late referrals, hospice care can be perceived as an unethical approach to the dying patient and cause confusion among family members and caregivers and in turn perpetuate the myths that hospice expedites and accelerates death. In the minds of these families “Hospice is more harmful than good”, and the families perception of truth is all that matters when they share their experiences with other friends and families which in turn can change others attitudes about hospice care at the End of Life. My hope is that physicians start to understand the concept that referring too early is always better than referring too late.