When faced with a life-threatening illness, the word many people fear most is “hospice.” Obviously, it is not a recommendation one wants to hear, but some of people’s fears are based on myths about what hospice does and that it means giving up hope.
Nothing could be farther from the truth.
To put it in simplest terms, a physician will recommend hospice when he or she feels the patient has a prognosis of six months or less to live. This is certainly not good news, but there are people who discharge from hospice either to pursue aggressive treatment, or because conditions change enough they no longer qualify. Or as some say, they “graduate.”
Common? No. But it does happen.
And you don’t have to be diagnosed with cancer to be hospice eligible. There are guidelines for admission for chronic, debilitating diseases like congestive heart failure, chronic obstructive pulmonary disease, and end stage dementia, amongst others. The benefit continues past the six months as well, as long as you remain eligible per guidelines to remain on service, so there is no time limit.
Another common misconception is hospice wants to give pain medications till the patient is sedated, or some even believe to the point of euthanasia. This is illegal and unethical, and absolutely unthinkable to hospice nurses, who specialize in symptom management with the goal of extending as much quality time of life as possible. Nurses work closely with doctors to titrate medications up in small doses to prevent over sedation and find the right amount to control symptoms with minimal adverse effects.
Even when people aren’t afraid that too much narcotics will be given to the point of overdose, they often have a fear of developing an addiction to pain medications. When taken strictly to control pain, it does not have addictive qualities – that only occurs in cases where it is abused by people who do not need it, or take it in excess of what is needed to control their pain.
Once those fears are put aside, many often think signing onto hospice means going into a facility, but hospice is a philosophy and method of care – not a physical place. The team of nurses, social workers, nursing assistants and chaplains work to keep you in your home or find placement elsewhere if that is what you choose. Most patients die in their own homes, with their family. And if not, most hospices have inpatient units, where families can stay around the clock with their loved ones. And with very low nurse-to-patient ratios, to ensure the kind of individual care their patients need.
The bottom line is the patient maintains control of decisions regarding their care as long as they are able to do so, and the hospice team supports them in their goals. That also means if the patient chooses to have their primary physician continue to follow them on hospice, that wish will always be respected.
Perhaps one of the biggest concerns is cost, but Medicare does cover anything related to the patient’s hospice diagnosis and comfort care without charge to the patient. In most cases, any supplemental insurance would still cover medications not related to the hospice diagnosis, but the hospice social worker can help review finances and let you know if there are any other expenses outside what hospice covers and assist with resources to help you meet those needs.
Because hospice seeks to proactively treat not only the physical symptoms, but also emotional and spiritual, they do not stop with caring for the patient, but extend their support to the family as well. And by family, we define that loosely as anyone who cares about the patient. That is why if the patient dies, hospice service doesn’t end – hospice continues to follow up with the family for over a year to offer bereavement services and support groups. Many have special programs aimed at children.
The “H word” is scary to most people when they first hear it, but they often say they wish they had found the service sooner, or don’t know how they would have managed without it. Because hospice deals in other “H” words, as well – help, hope, and if not the healing of the physical body, a healing of the heart and soul.