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Hospice Helps People LIVE the Best They Can
By: Barbara Karnes
Hospice care has a bad PR image, not because we’re not good at what we do, but because people believe hospice takes care of people who are dying. Since we are a death denying society, no one wants to hear that they need hospice services. It is a misconception that hospice takes care of people who are dying. If it did everyone would be eligible for hospice care because everyone is dying. Life is a terminal illness. That said, who does hospice take care of? Hospice takes care of people the doctors are having a difficult time fixing; people the doctors probably can’t fix. What does hospice do? Hospice helps people LIVE the best they can within the confines that their disease and body has put them in.
It is interesting that a person who can’t be fixed, who is approaching death through disease, looks very sick and often frail in the months before their death but they don’t look like they are dying or at least our idea of what a person looks like when they are dying. They have probably entered the dying process in those prior months but they don’t look like they are going to die. It is only in the weeks before death, one to three, that a person who is dying from a disease actually looks like they are dying.
Now, back to the bad PR image. People generally refer to hospice in the last weeks of a person’s life because of the above two reasons: no one has come forward previously to say “your loved one is dying in perhaps the next few months” and they finally actually look like they are dying. Unfortunately, this is way too late to help the patient and is often just crisis solving with the family.
Whether we are a patient or the family/significant other we will face this challenge of dying in the same manner we have faced our other life challenges. Some of us will deal with it directly, others with denial. The issue is not that people “aren’t ready for hospice” which is what I often hear but that they are in denial of what the medical profession is suggesting is a certainty.
Some physicians are reluctant to recommend hospice. It is sad and confusing why they would not give their patients the guidance and comfort that trained hospice professionals can offer. Maybe this reluctance to refer has to do with seeing death as a failure, maybe it is just ignorance as to the true value of hospice. It is perfectly acceptable to ask a physician for a hospice referral before they suggest it. If the signs are there you may have to take the initiative. Ask for the referral and let a hospice professional determine if hospice is appropriate.
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Barbara Karnes, award-winning end of life educator and award-winning
nurse, wrote "The Hospice Blue Book," Gone From My Sight. To read more from Barbara, visit her blog and website, www.bkbooks.com
Here are three things you could consider when determining whether it is time for hospice:
- The patient’s condition is deteriorating in spite of the treatment that is being given.
- You look at the person and say to yourself (and we have all done this but often not wanted to admit it) this person is not going to be here next year at this time.
- The family and/or significant others are having difficulty coping with the seriousness of their loved one’s condition.
We generally give people more time than they have. I know it is scary to think of using hospice. It says death will happen soon, but there is such guidance and support from hospice to help families that we need to at least ask for an informational visit. A hospice referral is a win/win. You win if they say it is too soon and you are not appropriate for hospice care yet or you win by coming onto the hospice program and getting much needed guidance, information and support.
Sometimes patients rally once they are with hospice care. I think it is because hospice professionals bring their expertise in pain management and comfort care to the patient and family. Everybody begins to relax a little. You feel less alone, less isolated and have more knowledge about what happens as death approaches.
What is so bad or scary about that? The scary part is that everyone has to admit, on paper, that there isn’t going to be the cure everyone was praying for; life isn't going to end with happily ever after. People have to face the realities of life--everyone dies. Fortunately hospice services can support and guide everyone during that scary time. Knowledge and not being alone reduces fear. Hospice helps reduce the fear we all bring to end of life decisions. It takes courage to face reality and we can face reality best when we have all the facts and are not alone.
So, how do I get someone who I think needs it on the hospice program? Talk with them about all of the above. The hard part then will be to stand back and let them make their own decisions. It may not be the decision we think is best for them but at least the decision will be based on fact not fear.
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