My Hospice, My Passion

I am a Provider Relations Manager at AseraCare Hospice in Pennsylvania, which lead to my additional role, a My Hospice Ambassador in the National Hospice and Palliative Care Organization (NHPCO). My name is Kelly Coons, and I am a Hospice Advocate. I believe that hospice, when done correctly, is a beautiful benefit available to people in the USA who have a terminal diagnosis of six months or less. In this post, I will provide an easy to understand rundown of Hospice Advocacy, including an explanation of why hospice advocacy is important, how to advocate at many levels.

What is hospice?

Hospice is an end-of-life benefit built into Medicare, Medicaid, and most private insurances. The benefits often include managing the symptoms, pain management, the maintenance of daily activities, and functional abilities. Hospice staff consists of Registered Nurses, Certified Nurses Aids (CNA), Social Workers, Spiritual Care, Physicians, and more. Hospice, like Nursing Facilities, and Day Cares, must follow guidelines put in place by the government and are surveyed by trained professionals. In order to receive Hospice services, a physician must believe if a terminal diagnosis progresses at its natural rate, the expected lifespan is 6 months or less. This is a lot to handle, but a very important conversation to have. A physician will write a hospice order once discussed options with the patient and family and it is determined that no further treatment will occur. In short, if you have a terminal diagnosis, meet eligibility guidelines, and choose to no longer seek aggressive treatment, hospice is for you. Hospice is there to help, when people feel there is no help to give.

Hospice is not the typical dinner conversation, which creates the issue of people understanding what it means. There is a stigma that people feel hospice means ‘I’m going to die tomorrow”, “once I sign on hospice, I can never get treatment,” or “signing your life away.” All of these stigmas are thoughts people have placed in their minds. There is one piece missing…Education. Hospice Advocacy is educating others about what hospice really is. How can we make hospice a topic that does not scare people? If we discuss hospice more frequently and review the facts, the more people are willing to listen. Hospice is not a place, but a service provided by some of the most compassionate and caring people I have ever met, these are the type of people that will be along your side on your journey. If we talk about hospice benefits and listen to stories from family members that have been involved when a loved one received services, that is Advocacy.

What is Hospice Advocacy?

Hospice Advocacy can be performed in many ways, some simple; others have more work and effort. Social Media has a large role in advocacy, for example, many of us have seen our friends Facebook profile pictures, many who change the frame for holidays, sports teams, or organizations they support. At My Hospice, we have a frame also. This is an example of advocacy, for those 7 to 14 days, you can promote hospice. Another easy way to advocate is to take a picture with this sign and hashtag MyHospice, try searching #MyHospice in twitter. If you enjoy keeping up with politics and knowing what the latest legislation is, think about joining myself and many others in Hospice Action Network, you will receive the most up-to-date information of hospice in the news. Register to Vote! By listening to politics, whether it be State or National, we listen to ideas, thoughts, and plans others want to put in place for us as US citizens. This time, make sure you listen to see what changes, if any, that candidates plan on making to the hospice benefit.

The why

Hospice is a benefit built-in because it is something we need. We need help getting through the tough times, we need help when we can no longer help our loved ones because we are too frail ourselves, we need help by learning how to grieve properly, we need guidance through the process, and we need help because we don’t have to do it alone. By becoming an advocate, talking, and educating others about hospice, you will be making a difference in the lives of many people around you.

I encourage you to join me in beginning the hardest conversation before it is too late.

nhpco ambassador