One of the most common questions people ask me is “How does someone qualify for Hospice?”.
This question is at the foundation of understanding what options are available at this stage of the disease process. That is not quite the beginning though… this important conversation starts at an open and honest discussion regarding “the goals of care”.
When we seek any type of medical care or are referred to any type of specialty whether it be Hospice, Oncology, Neurology, Nephrology, and so forth. The default position is that “the patient” will receive a consultation from the respective specialty where, ideally, the specialist will serve as a teacher and explain to us ethically the risks and benefits of undergoing such treatment. We have the right to elect or refuse said medical care. The specialty will try a treatment according to the accepted standards of practice in hopes of accomplishing a desired result. However, treatments are not synonymous with the desired outcome.
In other words, the treatment is not guaranteed to be the cure. I think that is where the open and honest discussion begins … what does the disease trajectory look like? There are three possible overall outcomes: stability, improvement, or decline. It is important that our family knows what our wishes are if there is a possibility for decline. It is important that we understand if the interventions that are being tried have a high probability of a cure. If there is no cure and there is a probability for a decline, what would that look like? Your healthcare provider should be able to explain to you to the best of their ability, what signs, symptoms, complications, and expected scenarios of a declining disease trajectory. Is that something you would like for yourself or your loved one to go through?
Here is where we come back to our original question. How does someone qualify for hospice?
If that person is a poor candidate for aggressive (disease directive) therapy or does not wish to undergo any further aggressive (disease directed, invasive) therapy, whether that is repeated hospitalizations, surgeries, curative chemotherapy, curative radiation, hemodialysis. That would fulfill the first step towards qualifying for Hospice as the goals of care would be said to be palliative in nature. To put it simply… how would you like your life or your loved one’s life to look like over the next six months?
The next big areas that are assessed when qualifying for Hospice are nutritional status and functional status.
Nutritional status: is the person being assessed for hospice not eating well? The first thing we look at is poor appetite and weight loss. over the last six months has there been a significant weight loss of ten percent of body weight? To put that into perspective a person whose weight is 180lbs would have suffered an 18lb weight loss, similarly, a person whose body weight was originally 110lbs would have suffered an 11lb weight loss over six months. Often families identify weight loss as ill-fitting clothes, decrease in skin turgor (elasticity of the skin – the skin tends to form a “tent” when pulled lightly), increasing skin folds, and “dysphagia” which means difficulty swallowing ( usually identified as coughing when drinking and/or eating).
Functional status: is the person being assessed for hospice a lot weaker now than they were six months ago? this could be manifested by reduced ambulation, their weakness would prevent them from working or having a job, they could (but not necessarily) develop pressure sores, increased sleepiness, lower blood pressure, changes in mental status/ behavior. Do they need a lot more help now than they did before?
When the hospice certification mentions “…if the illness runs its normal course”
Looking back a year ago, six months ago to today has there been a decline? And if we then extrapolate to six months from now based on the clinical judgment of the physician is the disease progression more likely than not result in limited life expectancy recognizing the fact that medical prognostications are not always exact? If the answer is yes then that would fulfill an important criteria in qualifying for hospice.
Lastly, there are disease-specific criteria that the Centers for Medicare & Medicaid Services gives guidance on. The Hospice nurse and the physician will discuss the individual disease-specific qualifying data per the Local Coverage Determinants. However just as we saw Nutritional and Functional status, looking a the specific condition a year ago, six months ago, and then today, extrapolating the disease trajectory to six months from now. Can the doctor more likely than not give a prognosis of limited life expectancy? if so that would qualify someone for Hospice.
We as humans are emotional creatures and the word Hospice is scary to most people.
We all process things in our own way, Hospice is an elective benefit that can be revoked by the patient or patient representative at any time. Choosing Hospice does not mean that the choice is permanent. Whatever choice we make… a clear and honest conversation with family, and with our healthcare providers can help us make an informed decision, give informed consent for treatment, and help us have closure and reconciliation.