Why Wait? You Will Only Benefit from Hospice Care.
Insights from a Hospice Nurse by Toby Balke, RN, MSN
Founded by our community, we help people live. Research suggests that some people can actually live longer under hospice care. Preparing for your loved one to leave you and this world can be overwhelming. Help is available to support you through what many consider to be the worst time of your life. Understanding and choosing the hospice benefit really can make a difference in the quality of life for both patients and caregivers, when all other treatment options have been exhausted, or if there simply no treatment options at all. Starting hospice sooner rather than later is the help that you need in providing care for your loved one.
The dying process is all very scientific if death takes a natural course and doesn’t come suddenly from a traumatic event. When people have lived with a chronic illness like dementia, heart failure, lung disease, or kidney failure, some of the drugs and other treatments may stop that organ from functioning at a life-sustaining level. In the case of cancer, oftentimes the side effects of the treatments become too burdensome on the body so either the doctor or patient determines that the treatment will discontinue. In the case of kidney failure, some elderly people will choose not to have dialysis and that is a personal choice. If your doctor has recommended dialysis, but you do not wish to choose that option, starting hospice would be a beneficial next step. In heart failure, the medications that maintain contractility of the heart, or help to keep pressures under control, or fluid from accumulating, will eventually become ineffective and the heart proceeds to intractable failure leaving people with debilitating fatigue, shortness of breath, and swelling. Palliative Care in the Treatment of Advanced Heart Failure | Circulation (ahajournals.org). It is not common, in my experience, that all doctors educate their patients on the progression of a disease or what to expect at the end. Getting educated on every aspect of the disease process from start to finish is a helpful endeavor. People who plan for the future have an easier time coping than people who don’t, ending up in crisis mode because they didn’t have a clue what to expect.
You may be wondering what happens when people are healthy and live to 100, what causes them to die? Eventually, we are all going to die, that’s just the way God made us. That may seem like a simple answer, but it’s the truth. When that happens, you may see your loved one slowing down, not eating much, sleeping more, not engaging in things they love to do, or not taking care of themselves like you know they normally do. This is when adult children or spouses generally seek medical evaluation thinking that something has gone wrong, that the medical community can fix. Sometimes that is true. Maybe your loved one has an infection or has low iron, which medications can remedy. But maybe the doctor says, we can’t find anything to treat. How frustrating is that! Well, what’s going on then? You may hear your doctor say, “he or she is just worn out, it’s best to make sure that affairs are in order, and you need to call in the family to help out.” Doctors may approach you about the option of hospice, but quite frankly, they are not very good at explaining hospice, leaving you to believe that your loved one is going home to die. Even when your loved one is not actively dying, but there are no treatment options, hospice is a very reasonable option that will help the patient and the caregiver work through the rest of the life of your loved one, providing symptom control, education, emotional and spiritual support, and helpful products. Anyone can call a hospice for an evaluation; it does not have to be your doctor. Hospices can be very insightful when there is no obvious “terminal diagnosis.” You need to leave it up to the expert hospice physician and clinician to determine whether your loved one may have less than a six-month prognosis based on mental, functional, and physical observations in the absence of scientific evidence.
The thing you need to know about hospice is that you will only benefit from the service, and it won’t cost you anything. Here are some things to consider. When your loved one is discharged from the hospital, the hospitalist says he/she thinks it’s time for hospice, he will send a discharge planner or case manager who will put a list of local providers in your hand and ask you to choose one. First, you need to know that calling hospice does not mean you are “giving up.” While the health condition has changed, your loved one may have months or longer to live. You need help navigating the reality of the situation emotionally, physically, and spiritually. Unfortunately, it happens too often that the family waits until the last minute to call in hospice, missing all the great services that would have been available to them had they called days, weeks, or months sooner. And your loved one may end up dying in the hospital under less-than-desirable circumstances, or worse being found dead in the bed, leaving you feeling shocked and even feeling guilty.
After multiple hospitalizations or trips to the doctor’s office and struggling at home with uncontrolled symptoms, weight loss, weakness, and falls, you finally decide to see what Hospice Savannah has to offer. One thing I have heard over and over is “I sure wish my doctor would have told me about hospice a long time ago”, and this is why. The service provides a skilled nurse case manager, immediate access to a nurse and physician 24/7 when needed, emotional/psychosocial support to include relationship reconciliation and advanced care planning, spiritual support no matter what your faith is or is not, medications related to the disease and associated symptoms, medical equipment, home health aides to assist with personal care, purchase of supplies such as diapers, wipes and under-pads along with wound care supplies, and oxygen delivery systems. In addition, hospice will teach you about disease progression, how to manage symptoms, how to provide care for your loved one, fall prevention, disaster preparedness, home safety, respite, and other more intensive care for symptoms that cannot be controlled in the home. Medicare Benefit Policy Manual (cms.gov).
We are happy to assess you or your loved one at your convenience.