Hospice Revisited: Misconceptions

I've written about hospice and my experience with them before. In my experience I've found hospice to be very helpful in keeping the quality of my life the best it can be. However, after my last article on hospice I received a lot of comments and messages with concerns about hospice changing the medication and treatments prescribed by their original doctor. That once they entered a hospice facility they and their families felt they had very little control over their treatment or the medication they were given, including the use of morphine in an attempt to improve the breathing of COPD patients.

Hospice and quality of life

First of all, let me make one thing clear: I was never in a hospice facility, (and unless I am comatose I will never enter a hospice facility). I was, however, on home hospice. The reason why I was referred to hospice at the time was because my doctor as well as my husband's doctor felt our COPD was so severe we had less than six months to live. My husband's doctor proved right: he died six months and one week after we went on hospice. I, on the other hand, was on hospice for four years before going off hospice. Due to the fact when I moved from New Mexico to Michigan the hospice in Michigan did not supply liquid oxygen and I did not do well on concentrators so I voluntarily left the care of hospice and started going to regular doctors again.

Hospice and medication

I want to make it clear, if you do not like the care or medications that hospice is providing for you, you are free at any time to leave hospice and go back to your regular doctor and the treatment you were on before entering hospice. Because your doctor refers you to hospice does not mean you had to go on hospice, accept treatment they are willing to provide for you, or stay on hospice if you are displeased with anything they are doing for you. A good hospice will do everything they can to improve the quality of your life on your terms. If you are unhappy with the treatment hospice is giving you or a family member, opt out of hospice care.

Many of you are under the impression that hospice changes your medication to hasten your death, that is not true! When you go on hospice, your insurance company pays hospice a flat fee each month for your care. Hospice must pay for any medication, treatments, doctor visits, nurses, aids or anything to do with your COPD out of that payment. Since we all know how expensive COPD medicines can be, many hospice will only provide the least expensive of the COPD medications. Like concentrators for our supplemental oxygen instead of liquid and older medications rather than the newer more expensive ones. Hospice does the best they can and have helped many of us COPDers live longer and better lives. However not all hospice are good or they are not right for everyone.

I have had several private messages from COPDers that live alone and have been referred to hospice and complained that the hospice was changing their medications or did not supply the medications they felt they needed to feel their best. They felt that not having the medication they were used to would quicken their death, but, because they lived alone they felt they needed the other services hospice has to offer so they had no choice but to stay on hospice.

You do have a choice

They need help with, cooking, shopping, cleaning, help with personal care, and many are in need of companionship other than Facebook. We all love, care and worry about each other, but we all still need one-on-one face-to-face human contact. Sometimes we need a real shoulder to cry on, a virtual one just doesn't do it. I understand all these things. I lived alone for a long time and I'm here to tell you: you do have a choice. You do not have to go on hospice if you feel it is not right for you. There are other organizations out there that can provide to you most of the services provided by hospice and you can still get the medication you need and no restrictions are put on your life. Palliative care may be a good choice for you. Palliative care is not available in all areas so if you live alone and really don't want to go on hospice, than you might want to look for other alternatives.

Stay tuned for Part 2 of this article where I'll lay out some helpful resources in your community that might help!

Breath 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.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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