Does the Word Hospice Scare You?
When most people think of Hospice the first thing that enters their mind is death and dying with peace and dignity. I have been at death's door and seen the pain and sorrow in the faces of those I love. I never wish to see it again. Believe me when I say, there is nothing dignified or peaceful about dying. No matter how you look at it, death is a very unpleasant matter.
What hospice means to me
I may not be able to choose the manner of my death or the time of my death, but, because of hospice, I will not die in a hospital with tubes and needles coming out of every orifice of my body. Nor will I die in a state nursing home with the stench of urine in my nostrils. Although most people on hospice die at home surrounded by loved ones, I choose to die alone. Because of Hospice I will be able to die on my own terms, no pity, no sorrow, no tears, but full of fight.
Because of the services that hospice provides I will be able to live to the fullest extent my condition allows. Just the knowledge that hospice "help" is a phone call away, (any time, day or night), gives me a great sense of security. I am not on hospice at this time but, I have peace of mind in the knowledge that if I choose, hospice is there for me.
The stigma of hospice
Whenever people found out I was on hospice their first reaction was, "I'm so sorry, my dear." Then they try to avoid me like the plague, as if death were "catching". When they find out I was on hospice nearly four years... the doubting begins. They don't believe I was ever on hospice -- after all, people on hospice don’t live that long. Then they get curious, asking questions about how I could do without my medicine and exactly what kind of hospice I was on that allowed me to live at home and I was not bed ridden. Their perception of hospice is that it is a place you go to die when you are tired of fighting or there is no longer anything the doctors can do for you.
With the passing of the health-care bill, there was a lot of discussions and objections over a provision that would require doctors to counsel the elderly and terminally ill about Hospice. Most people are uninformed about Hospice so they started to believe the rhetoric about death squads. They believe the government is going to decide who lives and dies by putting the terminally ill, sick and elderly on Hospice who will take away their medication, thus, hastening their death. The only medication they give you are drugs to keep you comfortable till you die. People need to be educated about Hospice and its benefits. The reality is that Hospice is a service that improves the quality of what life you have left. "IT DOES NOT HASTEN YOUR DEATH".
How exactly does hospice work?
Medications and hospice
When a person decides to go on hospice the first thing you need to know is they do not take away medications. Any medication or medical treatment you were receiving before going on hospice you will also receive from hospice. The distinction you have is anything medically having to do with the condition you're put on hospice for must be handled by hospice. You are not allowed to go to any other doctor, the ER or hospital for that condition you are receiving hospice care for. If you do, your insurance will not pay for this service and you will have to pay for it yourself. When I was on hospice they provided me with my oxygen, BiPAP, my nebulizer and its medication, Spiriva and because several of the other conditions I have are a direct cause of the COPD they provided me with my heart medication, acid reflux medication, and Xanax. Whenever I started to get an infection of any kind they supplied me with antibiotics, prednisone and flu shot if needed. Hospice did not withhold from me any of the medications the doctor felt I needed. The hospice I was on did not deliver any medications intravenously.
All medication was given either orally or by patch. When you go to hospice they do try to put you on medication you may not currently be on like water pills, laxatives; the reason for this is because they found that most terminally ill people retain water and have trouble having a bowel movement. Since I have no trouble in that department, I do not take those pills. They also supply you with morphine or oxycodone to relieve any pain or discomfort if needed. When you have COPD they give you the morphine or oxycodone in very low doses to help your breathing. It was one of the other medications I chose not to take, unless I'm in extreme pain I don't even take aspirin or ibuprofen.
So, you see, hospice is not there to help you die by denying you the medicine you need. Hospice's main duty is to see to your care, comfort and quality of life so you can live the best life your condition allows.
How hospice helps a patient's caregivers
Hospice is also there for the family or caregiver of the terminally ill person. By educating them in the care, needs, and what to expect in the following days and months. If you are receiving hospice in-home and your caregiver feels they need a break, hospice will take you into their in-house facility for up to two weeks to allow your caregiver the rest they need so they don't feel so overwhelmed and you won't feel guilty for putting all your burdens on them. When you're in a hospice they have their own doctor that sees you once a month, a nurse that sees you once a week, a health aid will come in daily to help you with your personal needs. They will even fix you a light meal. You have a social worker who will coordinate all of your needs. When I was on hospice I still traveled.
Additional hospice support
So whenever I went out of town my social worker would arrange for any oxygen I need on my trip and also to have my case turned over to hospice in the area where I would be staying. Lastly is the chaplain that will see you at least once a week, more often if necessary. The chaplain will not only be there for you during the illness but, will be there to comfort the family afterward too. So if you ever reach the point where your doctor advises you to go on hospice, don't look at it in a negative way as if your next step is death. But look at the positive side. Hospice is there to make your life a lot easier and when it comes to COPD, no one can predict with any accuracy how long you have to live. For almost 4 years every six months I had a doctor tell me I wasn't going to make another six months. Here I am eight years later and still kicking.
Hospice education and understanding
Hospice gets a bad reputation and that's due to the fact little is known about hospice. Unless you are a hospice patient or caregiver of one, most people have no idea of what it's really all about. Young people, old people, healthy, the terminally ill, even some doctors have one thing in common, they feel uncomfortable talking about death or dying. Those who are willing to talk, or should be talking about the subject of dying are hesitant about approaching the subject of hospice. For many hospice may be a better alternative then further hospital stays or medical procedures. But far too many people have the mistaken viewpoint that hospice might hasten their own deaths or that of a loved one, and want nothing to do with Hospice. People need to be educated about hospice and how we can improve the quality of life when you have a terminal illness.
If you go in to any doctor’s office, hospital, clinic, or social service waiting room you can find a multitude of pamphlets or booklets on subjects ranging from cancer to addictions. Not once have I seen any material relating to hospice, which is a shame. The general population needs to be educated on the services of hospice, what it really does and what it means to be on hospice. If hospice booklets were available in waiting rooms people would have easy and more discreet access to reading them. Whether they browsed through the hospice booklets while waiting for an appointment or slipped them in their purse or pocket to take home and read later, more people would be educated about and understand hospice. As the time of their death approaches, with the right knowledge of Hospice, I believe many more people would avail themselves of hospice services. Instead of fearing hospice, as a means of quickening death, they would (as I had) embrace hospice and be thankful everyday for the quality of life the services of hospice will allowed them.
I've spent nearly 4 years on hospice
After almost 4 years on Hospice, I moved from New Mexico to Michigan and went off Hospice. The hospice where I live in Michigan did not supply the liquid oxygen I required. They only had concentrators. So they turn me over to palliative care (never heard of it before that time), which for me worked out even better than hospice. Since with COPD life expectancy can't be predicted, it is a better choice for those of us with COPD. As doctors learn more about palliative care, they are suggesting it to their COPD patients more and more.
I hope I helped you understand "Hospice is nothing to fear", they are here to help. Breathe deep and easy.
Editor’s Note: We are extremely saddened to say that on March 2, 2018, Mary Ultes passed away. Mary was an engaged advocate for the COPD community who strived to help people live fulfilling lives. She is deeply missed.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?