World Hospice & Palliative Care Day!
Here we are again bringing recognition to another aspect of caregiving. Today, October 10th, is World Hospice and Palliative Care Day! A very important part of any terminal illness' trajectory, hospice and related care are often misunderstood.
What is it? Hospice care provides palliative medicine. This is a branch of medicine designed to manage symptoms in a terminal illness. At this point the focus is not to cure the disease, but to make the individual comfortable, relieve pain, and improve quality of life. Curative medicine would be mainstream medicine - looking for a cure, aggressive treatment, feeding tubes and the like. While there are some hospice facilities, most hospice care occurs in your primary residence. Hospice offers a variety of services, including music therapy, spiritual support, personal care/hygiene, medication management, nutrition planning, and many other services that vary between hospice agencies, and it all comes to you at your convenience.
How do you qualify? Generally speaking, a primary care physician will make a referral, based on a set of symptoms that indicate end of life. Hospice is 100% covered by Medicare, Medicaid, and most private healthcare plans. In order to qualify for hospice care, you must have approximately 6 months left to live, and be in the terminal stage of the disease. You can receive palliative care at any time - if your facility or hospital offers this kind of care. See - its kind of confusing! I had a hard time understanding all of this towards the beginning. In my case, my mother has been on and off hospice a few times in the last few years. There were times where she lost a lot of weight, lacked interest in food, and seemed very ill...but then she recovered! So they took her off. Hospice is flexible in that way. You are able to go on and off as needed, but since it is such an expensive service, it is reserved for the terminally ill. For us - my mother has been losing weight steadily, is eating very poorly, and cannot walk. Those are all factors that allowed her to sign up for hospice again.
What are the benefits? I really love the hospice care model. In a disease like FTD, we know it is not curable (not yet at least!), and for our family, along with my mother's wishes, no extraordinary measures are going to be taken. So when she had a bad infection and we had to rush her to the hospital, we were met with "Why are you here?" from the Doctors. They knew they could do nothing to help the overarching problem, the FTD. We were there because she was not on hospice yet, and by law the facility she lived in had to call an ambulance when a patient was severely ill/injured - even if she was receiving palliative care (but was not on hospice itself). It is a big inconvenience, especially knowing we did not want to treat anything, and its expensive! However, since FTD has such a long progression, most of her afflicted time has not been hospice eligible. I am so grateful for the care now, but do wish this kind of care was covered on a long-term basis for those wishing to avoid curative medicine. I think as we move into the future with more complex health problems arising like FTD, our healthcare model will change - for the better!
Currently we have a lot of support. Patients families are eligible for bereavement counseling after a death, some plans up to 13 months, and we are able to call for counseling any time. They have a spiritual team, and a priest visits with my mother regularly - and calls to ask questions about what she likes, what she would respond most to. It is a very tailored experience and I think it serves to bring dignity to a otherwise difficult time. Our hospice team stays the same, so we are able to get to know who is caring for my mom.
I am sure I left some things out. What questions do you have about hospice care?