With October comes Halloween just around the corner. A time when many of us enjoy a scare or two. So during this time of ghosts and goblins, it might be appropriate to talk about a fear that might prevent many of us from getting a remarkable kind of care.
There are few words that cause more fear, or are more misunderstood, than “hospice”. Just mention the “h” word, and most people stop listening. Many have misconceptions about what hospice truly is.
Many of our patients and their families had little or no idea of what hospice actually was or what it involved until they came under our care at Delaware Hospice. But when they started gaining the many benefits of hospice care, the most common statement we heard was “we wish we had known about hospice sooner.”
So let us help clear up the misconceptions and remove the fear of hospice.
1. Hospice patients can no longer receive care from their primary care physician.
False. Your doctor is still very much involved in your care, and is in fact part of your care team. We work together with your doctor to create a plan of care focused on you and your family. And your physician is kept informed about the care we deliver in your home. An added benefit about hospice is that more people are caring for you to provide an extra layer of support. Our team works with your family to coordinate all of the resources you need including medications, equipment and supplies.
2. Hospice is where you go when there is nothing more a doctor can do.
False. Hospice care is not a place, but a philosophy of care providing medical, emotional and spiritual care focusing on comfort and quality of life for the patient and their family.
3. Hospice is only for the last days of life.
False. Patients and their families can receive hospice care for six months or longer, depending on the course of the illness. Hospice care is most beneficial when there is sufficient time to manage symptoms and establish a trusting relationship with both the patient and the family. In fact, many of our patients have told us they wish they began hospice sooner.
4. Once you’re enrolled in a hospice program, there’s no turning back.
False. Patients can stop hospice treatment at any time and return to a curative-based approach if they feel that will benefit them more. Perhaps a new treatment has been discovered or has begun to show signs of improvement. Either way, a patient can opt out of hospice for any reason.
5. Hospice depends on sedation as a major way to manage patients’ pain.
False. One of the unique things about hospice is that the care is focused on each person’s individual goals and wishes. For most people facing a terminal illness, it’s not death they fear most, but often the thought of being in pain. With pain comes pain management. Delaware Hospice Staff are uniquely skilled in pain and symptom management, but always at the direction of the patient’s doctor, the patient’s own wishes, and their family’s wishes. If patients have pain, they are started on a low dose, and if the low dose works, they remain at that dosage. Pain management is only increased if the patient is still having pain.
6. Hospice is a death sentence.
False. Hospice patients live, on average, 29 days longer than non-hospice patients. This is because the patient is in a familiar environment – their home, the assisted living or skilled nursing facility in which they reside. Their symptoms are being managed, all of their needs are being met, not just the physical, but the psychosocial and spiritual as well. Delaware Hospice also works to improve quality of life and helps keep patients out of the hospital with the lowest readmit rates in Delaware. Patients can receive care longer than six months, and some patients even get better after starting care because of the intensity and focus of the care they receive. Some patients even graduate hospice care because their health improves!
7. Hospice is for when there is no hope.
False. Hospice may signal the end of treatment, but with hospice there is hope for a better quality of life for the time that remains. It is for those who now want to focus on quality of time vs quantity. Hospice provides care and support that helps families come together to share special moments and create lasting memories.
So though this is a time for scary stories and haunting good fun, there is nothing scary about being given the gift of quality time, rather than extra time.