We are taught at a very early age, "If you don't have something nice to say, don't say anything at all."
Why? Words have power. Some words - stupid, dumb, ugly, fat - have power because they are intended to be hurtful. Say these things enough, and the target of your hurt begins to believe them.
Other words, like strong or weak, have power because we give them power.
One word has all sorts of power to wreak fear and dread over all who hear it - simply because people have given it that control. What word could cause so much hurt, pain, denial and even devastation just by being spoken? Do you know the word? Have you experienced it? That word is ‘hospice.'
I said it, and you read it. We both survived.
I am not being critical, nor am I trying to make light of an incredibly difficult situation. I am a firm
believer that knowledge is power. My goal is to share with you that this word has no more control over a situation than anything else.
I have worked in hospice for more than seven years now, and I have never seen any word that can evoke such powerful emotions. These emotions come from everyone - healthcare providers at all levels, patients, families, friends. Everyone responds the same way - negatively. Usually the word is whispered. I am often asked to avoid "that" word when speaking with the family or patient. People often ask if we can "change the word" so it is not so ugly.
So let's begin to break this down into logical, bite-size bits that can be easily understood while we try to process all of this information. Many who hear the word believe that hospice is a death sentence. Let's face it, no one wants to lose someone they love. Unfortunately, we will all face that journey. I will. You will. Everyone we love will one day have to deal with death. Choosing hospice does not make that happen any faster. In fact studies have shown that patients who choose hospice live, on average, 29 days longer than those who opt for other treatments.
Twenty-nine days. 29 days. Wow. That's almost a month. A month of quality time spent with people we love. Hospice is responsible for managing pain, physical pain, emotional pain, spiritual pain. Often, when working through things, the quality of a patient's life will improve.
Did you know that people can get "too well" to be on hospice services? Actually studies have shown that 33 percent of people on hospice services will become "too well" and they will be discharged from hospice services as a result. As they continue to live their lives, if they experience another decline in their health, they can be re-admitted for as long as needed.
Did you know, too, that hospice is not a place? Most hospice services are carried out in a home setting.
Medicare prefers you stay at home - wherever you call home (private residence, nursing home, assisted living). You can stay at home with your family, your pets, your "stuff" so you can be as comfortable as possible.
Hospice Houses, or Inpatient Units, are for acute symptom management. Basically, these buildings are the hospitals for the hospice patient. These buildings that you may see in your community are deemed as a short-term stay facility to manage problems that may arise throughout the disease process. Some of these problems might include pain, nausea, constipation, family concerns or others. Once issues are resolved, the patient can return to the comfort of his or her home.
Did you know that Medicare and Medicaid each pay for hospice services at 100 percent coverage? As well, most private insurance plans are generous with their coverage for services. What does this mean to you? It means that you or your loved one can receive these services without trying to figure out how to pay for them.
What services can you receive for patients needing hospice services? Hospice services utilize a physician to oversee care, a pharmacy to provide medications, nurses to provide direct care to patients, certified nursing assistants to provide personal care (bathing, grooming), chaplains and social workers to provide emotional and spiritual care while ensuring adequate resources for the patient and caregiver. Hospice provides emotional support to the family during this time as well. Volunteers also provide support to patients and families, or in the hospice office to support the hospice care team.
Who helps after my loved one dies? Hospice does. Hospice provides someone to make regular contact with families for 13 months (more, if needed) to help with the grieving process.
Often, hospice team members become part of the family. The number one thing we, as providers, hear over and over again from families is, "I wish I had know about this service sooner."
Reality is, people allow their fear of the word to make decisions for them without fully understanding the benefits available to them. Remember I said earlier that knowledge is power? Now you have knowledge. Make decisions based on your power, not your fear.