A number of people hold preconceived notions about the thought of enlisting the aid of a hospice care team. Jeffrey Brown, MD, HMDC, Parkview Home Health & Hospice, addresses these myths, and shares his thoughts on the true value of his team’s services.
What exactly is hospice, and is it right for me (or my family)? It seems like a simple question, but depending on who you ask you can receive a myriad of responses. Let’s start by defining hospice at its simplest. Hospice is comfort-oriented care for patients with terminal illness and a limited prognosis (currently defined as a life expectancy of six months). To be clear, though, hospice is more than a philosophy of care. It is a care delivery system.
It involves a team of healthcare professionals all working together to support a patient and their family through the last stages of terminal illness. It provides emotional, physical and spiritual support at whatever level required by each individual. It provides financial assistance in paying for comfort medications, as well as medical supplies and equipment. This care can be provided in patients’ own homes, long-term care facilities, and, in extreme circumstances, a hospital or other inpatient facility. It is a robust system designed to provide the best quality of life for patients facing the end of their life. And it is, therefore, relatively expensive to provide, which is why Medicare (and secondarily, Medicaid and most private insurances) defined the above criteria to determine who should be eligible for the hospice benefit.
In other words, to be a good fit for hospice care, a person must have both the required limited life expectancy and wish to change focus away from life-prolonging treatments in favor of interventions aimed at promoting quality of life. So, just being “ready to go”, and wanting to focus solely on comfort care doesn’t make you automatically eligible for hospice (should their medical condition suggest much more than several months to live). Similarly, having a terrible illness with a prognosis of only a few months, yet still wanting to fight for every last day with any and all treatments available, isn’t an appropriate fit for hospice care.
There are also times when hospice isn’t feasible from a purely regulatory standpoint. For example, under almost all circumstances, we can’t utilize our hospice benefit while also pursuing certain other medical treatments covered by Medicare part A: short term rehabilitation stays, home health care services, or dialysis treatments. Understanding the above, and that hospice isn’t always the right/best choice, why is it that many patients who are eligible don’t get this extra support and assistance that they are entitled to? To answer this question, I think we have to look at some pervasive mythology that surrounds hospice.
“The time to call in hospice is when you are on your deathbed.”
As stated above, the intent of the hospice benefit is to care for people in their final months of life, not the final days. While from a medical standpoint, getting the appropriate medications available and doses adjusted to achieve symptom relief and general physical comfort can be achieved fairly rapidly, the greater mission of hospice care is to provide emotional and spiritual support to both the patient and their loved ones as they progress through the terminal phase of their illness and prepare for end of life, and that simply can’t be accomplished in a few days. While it is better late than never, hospice is designed to care for people over an extended period of time.
“Hospice just gives you morphine until you die.”
I almost don’t want to give this any credence, but it is something we hear again and again in this business. I think there are a couple of myths here, really. First, there is the misconception that morphine is a powerful drug. While it is a very effective medication to treat both pain and shortness of breath (in appropriate patients), it isn’t all that potent. In fact, it is among the weakest of the available opioid medications, which is why it is used. Patients who have a fairly extensive history of opioid use (and therefore have built up a tolerance), often need more potent opioids such as oxycodone or hydromorphone to achieve adequate symptom relief. Morphine is also available as a concentrated liquid, which is easily administered even in patients who have difficulty swallowing other oral medications. So, yes, morphine is a relatively common medication in hospice care, but it isn’t because it will help you to the light. There is actually some evidence that using morphine and similar drugs to achieve comfort in patients nearing end of life actually extends life, albeit by a small amount.
The second, more troubling, misconception here is that hospice has a goal of accelerating death. Not only is that simultaneously illegal, unethical and against hospice’s intended goals of improving quality of life, it also makes little sense from a more selfish standpoint. So if you are skeptical about the above, bear with me. Understand that hospice is reimbursed based on the number of days in which they provided care. It would be completely counterproductive for a healthcare provider in this model to shorten the life of a client. In other words, a hospice agency makes more money the longer someone is on service. So rest assured, your hospice team has no intention of accelerating anyone’s demise.
“Hospice is just for people with cancer.”
This is an easy one, but also understandable. When the hospice movement took hold in this country the better part of 40 years ago (before such time that there was any reimbursement, and hospice agencies were supported solely through donations and bake sales), hospice care was almost exclusively about cancer care. That is far from the case today. Nationally, cancer patients make up only about a third of hospice recipients. The rest are a myriad of chronic illnesses, including heart, lung, liver and kidney disease, as well as dementia and other neurologic syndromes. Again, hospice eligibility is about prognosis, not diagnosis.
“Hospice is for when you give up.”
Hospice is about changing goals, not giving up. This myth is especially relevant when talking about patients facing cancer diagnoses. The way we, as a society, talk about a patient’s “battle” or “fight” against their tumors does, in my opinion, put undue pressure on them to pursue perhaps unwanted treatment lest they be perceived as cowardly. But regardless, there comes a time when that treatment comes at a cost that isn’t worth its benefit, and changing focus from quantity to quality of life makes the most sense based on a patient’s own individual values. That is simply reframing our goals, not “giving up”.
As already mentioned, hospice isn’t about shortening life. It also isn’t about extending it, per se. What hospice care is about, is focusing on quality of life. Making every day as good as it can possibly be. We aren’t in control of how many days we have on this earth (spoiler alert: we never are, regardless of what treatment path we choose), but your hospice team can work just as aggressively to make the majority of those good ones. That is really what hospice care is all about, when you get down to brass tacks.
Honestly, the small list above is just scratching the surface. Ultimately, it is up to each individual person and his or her healthcare provider if hospice care is right for them. Sometimes it isn’t, which is okay, too. But it has the potential to be a tremendous experience for patients and families who choose this path. Don’t let the mythology fool you. We all are going to be faced with our mortality at some point, and I’m comforted in knowing there will be someone to help guide myself and my loved ones along that path- when the time comes.
If you have any question about hospice care, please call (260) 373-9800.
