One of the ways hospice programs measure their effectiveness is by looking at the percentage of deaths in a particular area that are hospice deaths — those individuals who have hospice care at the time of death.
The number is calculated the same way across the country, and is obtained by comparing the total number of deaths — including those that are unexpected such as sudden heart attacks, accidental deaths, murders and suicides— to the number of hospice deaths. That number nationwide is 42 percent.
Here in the Eastern Panhandle — an area that has been served by hospice for more than 30 years — that number is just 34 percent. Just a third of all people who die in our four-county service area of Berkeley, Jefferson, Hampshire and Morgan counties die with hospice services. The math is simple—66 percent of all the people who die in our community never have hospice care.
One misperception is that calling hospice is the equivalent of giving up. This results in late referrals by physicians or the refusal by the patient or family to accept services. Indeed, In 2011, 22 percent of all patients served by Hospice of the Panhandle received seven days of care or less.
But, people do not give up when they are referred to hospice. In fact, studies show that when they access hospice care early, people live longer than expected. Why? Because once enrolled they reap the benefits of state-of-the-art pain management, information and education to better understand what to expect with the disease process, and help with all the day-to-day challenges that arise when someone is seriously ill. They are not afraid, in pain or run down by frequent trips to the hospital. They want to live!
It is best to refer or call early. It is so much better for the patient and the family if the call to hospice comes before a crisis. We can make a visit, explain the services, complete a nursing assessment and if the patient is medically eligible, services are started and the patient and caregivers can then receive months of support instead of days.
Late referrals become self–fulfilling prophecies. People think that a call to hospice will cause the patient to die quicker, so they don’t call until the patient is near death. They make the call, the patient is enrolled, and then dies within a few days. Their assumption becomes a reality. But it is not for the reasons they thought. They just waited too long.
The death rate has not changed. It’s still one per person. I say this with tongue in cheek. But the fact is, we all will die. We have no control over that. What we can control, however, is how we live until we die. We can choose to deny our mortality and pursue aggressive treatment until we die — in the chemo clinic, the dialysis unit, on the cardiac floor, in the ICU, in the ER or hospital. Or we can adjust our goals to live more comfortably and spend our time in ways that bring us joy.
We have options. As patients, we can ask our physicians for honest information so we can make decisions that are right for us. We can invite a hospice worker into our home to learn about the services in preparation for our future. We can ask for a referral to hospice. Physicians also have options. They can begin talking with patients in advance of a decline. They can assure their patients that they are not giving up on them but rather continuing to provide support as the patient’s disease progresses. They can speak positively about hospice and not see it as a last resort. And caregivers have options too. They can encourage their loved ones to accept a visit from hospice. And they too can see hospice as a positive action step and not the end of the road.
Eventually, people will change the way they think about hospice. We are seeing it. Ever so slowly people are beginning to understand that to call hospice is to open the door to a fantastic, supportive service that is cost-effective and helpful. Eventually more people will see the benefit to calling hospice early. And eventually more people will appreciate that the end of life does not have to be characterized by fear and pain, frequent trips to emergency rooms, hospitalizations or admissions to the intensive care units and they will experience the comfort and quality of life that hospice affords both the patient and his or her loved ones.
Anyone may contact Hospice of the Panhandle with a referral or to schedule a free informational visit by calling (304) 264-0406 or (800) 345-6538.
— Kathie Campbell is the Director of Access for Hospice of the Panhandle. She writes about hospice and related issues and welcomes your comments. She can be reached at firstname.lastname@example.org.