by Debbie Parker-Oliver
Hospice payment reform has arrived. A recent study by Joan Teno and Michael Plotzke presented to CMS found an alarming number of patients were not getting hospice visits in the final days of life. Likewise, a recent study out of the University of Buffalo looked at the experiences of EMTs handling death and dying calls, many of which were with hospice patients. Both of these studies cause us to wonder where the hospice staff visits were during these very difficult days/hours. Why didn’t family call them rather than the EMTs? The goal of payment reform is to provide the resources necessary for hospice patients and families to receive additional nursing and social services in the final days of life. In theory it sounds like the answer to the problem, pay them and they will be there. But money may not be the only problem.
While providing additional resources, these reforms challenge hospice programs in many ways. Not to be taken lightly is the expectation that the hospice staff will know when the final days are here. Prognostication is both an art and a science and the ability to guess if this is the time is not easy. Staffing is yet another challenge as some programs implement standard visit schedules (2x per week). The new payment model is one that best fits flexible visit schedules, with the timing and frequency of visits determined by patient need. Yet another issue is “what to do” in those final days or hours, especially if things are “as good as they can be”. While staff experience deaths of hospice patients perhaps hundreds of times per year, family members, caring for their loved one, will most likely experience this once in a lifetime.
Walking the journey toward death in those final days is a difficult one, often with changes in symptoms, cognitive status, and personality. These changes, normal and expected to hospice professionals, are not normal to a family. The traditional answer to family questions regarding these unexplained and troubling events may be, “its part of the dying process”, yet this explanation does not soften the emotion experienced by the family. Most hospice programs provide family with a handout of some form that is to prepare them for what dying might look like, yet when it is actually near, the handout may not tell them what to do, nor help them cope with what they are experiencing. The terrible sound of agonal breathing or a death rattle, the anxiety associated with oxygen deprivation, the confusion with sudden drastic changes in pain medication, or the frustration with the incontinence are terrifying for family and produce great anxiety. Assurances that the patient is not suffering, or the validation to administer greater and greater amounts of narcotics, does not always give the family comfort. Fear that your loved one is suffering, or fear that you killed them with the final dose of morphine can have lasting effects into bereavement. The final days and hours of caregiving will be relived over and over again by family as they learn to deal with the reality of bereavement and carry the burden of guilt, regardless if they actually are guilty of doing anything “wrong”. Fear can lead to panic, and panic can lead to calling an ambulance whose response is minute rather than a hospice nurse who may take an hour or more to respond.
Hospice payment reform will only address the issue if it leads hospice programs to examine their care during those final days. Providing education on the expected physical symptoms, waiting for family to call when they need something, or using the standard phrase, “it’s a part of the dying process” will not change the outcomes. Preparing family members not only with what to expect but also with things they can do can provide control and reduce fear. Telling them when to call is more helpful than expecting them decide if something is worth calling about, especially at 2am. Validating the emotions that come with caring for someone you love during this difficult time, and teaching family how and when to say goodbye are all helpful necessary interventions. Working with family to proactively create plans for how care will be delivered and who may be available to assist in those final days is critical. A proactive approach by the hospice team that includes not only increased visits, but also phone calls, and expanded education and coping strategies may be the key. Perhaps an ignored part of most quality assurance plans, perhaps payment reform will provide incentive to think outside the box and create interventions for improvement.
Chat discussion questions
- What are ways we can prepare hospice family members for the final days/hours of caregiving?
- What are the most troubling symptoms in the final hours for hospice staff to manage?
- How are hospices preparing for payment reform to allow them to be more present in the final days/hours?
What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 1/13/2015 - 9p ET/ 6p PT
Host: Debbie Parker-Oliver Follow @oliverdr
Follow @hpmchat for up to date info.
Debbie Parker-Oliver, PhD, MSW is a a passionate hospice researcher at the University of Missouri, Social Worker, and diehard Tiger fan
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