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, with 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. 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 in 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 found out I was in hospice for nearly four years, the doubting began. They don't believe I was ever in hospice -- after all, people in hospice don't live that long.

Then they got 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 bedridden. 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 were 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 and 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 life you have left.

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 to 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 the 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 and 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 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 who sees you once a month, a nurse who sees you once a week, and a health aid who 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 in hospice, I still traveled.

Additional hospice support

So whenever I went out of town, my social worker would arrange for any oxygen I needed on my trip and also to have my case turned over to a hospice in the area where I would be staying. Lastly, the chaplain 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.

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 6 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 has a bad reputation, and that's due to the fact that little is known about it. 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, and 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 than further hospital stays or medical procedures.

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 into 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 discreet access to read 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 every day for the quality of life the services of hospice will allow them.

I've spent nearly 4 years in hospice

After almost 4 years in 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 turned me over to palliative care (I had never heard of it before that time), which worked out even better than hospice.

Since 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 have helped you understand that "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.