What is Quality of Life: Understanding Expectations in End of Life Care

Quality means many different things to people and as it relates to the circumstance. Likewise, the expectation of quality differs based on the situation one is facing. As we reach the end of life most want peace and comfort surrounded by those they know and love. Unfortunately, sometimes this cannot be the case due to estrangement, lack of resources and other challenges. Hospice was meant to fill this gap and until it became a payor source enabled them to provide as much as was needed to those at the end of life. Once Medicare began paying for these services; regulations and oversight were added taking much of the focus away from patients and families and more on administrative tasks. This is not to say that oversight was not needed in order to protect the public from potential fraud which sadly we see today. That said, for some hospices quality has become little more than a requirement, a non-revenue generating function that we usually fill with a nurse from the field with little to no training. Then the expectation is that this person will “figure it out” and make a difference. Add to this more quality reporting requirements that grow nearly every year making quality feel at times like a hamster wheel that never stops. For those with passion and commitment, it gets tiring and in some cases quality just falls to the side to be worked on “when we have time”. Yet doesn’t the patient and the family still deserve quality regardless of the external forces bearing down on the hospice. Doesn’t the hospice deserve the ability to use their resources to improve quality rather than fighting denial of claims. The simple answer is yes but too often hospices don’t get that choice which only means the end user i.e. patient gets what is left over. Just ask any hospice nurse with a caseload of 18 and a social worker with a caseload of 50 if they think they are providing quality of care. Yet there is hope , there is grace. Patients are forever grateful, patient and understanding. The hospice team continues to work as a unit, jumping in and doing above and beyond despite what is happening in the office. The dedicated quality person is doing their part to highlight the positive within the hospice and engage staff to do just a little more all in the best interest of the patient. The outcome is making a difference one patient at a time and ensuring that one patient had a good death with hospice by their side. So we pick ourselves up once again and head out for the day to try again. Afterall, for many hospice work is still a “calling”. For 2024 wouldn’t it be a dream realized to “Make Hospice Quality a Reality” for patients and our hospices.