If you are like I am, you probably see the word
hospice and feel an uncomfortable tingle in your spine. We're conditioned to recognize that word as a signal that someone is about to die, and since death is something most of us would probably prefer to not dwell on, we also avoid dwelling on hospice care.
Of all the topics I've explored so far in this series, I think this one may carry with it the most myths and misconceptions, so I hope you can learn alongside me today. (Because I know for sure I'll definitely be learning!)
Ryan's Aunt Karen, who is
almost my birthday twin, has been working as an RN for a hospice organization for four years, and I have to tell you, she is passionate about her work. Though I have not been on the receiving end of her hospice care, I know from observation of her life that she's good at what she does, and you're unlikely to ever find a soul who takes this work more to heart than Aunt Karen. I asked her if she would help me better understand what hospice really means and if there are parts of it that we need to retrain our minds to understand more truthfully.
1. Hospice is not an automatic death sentence.
Let's just get that misconception right out there in the open and talk about it first! Most people (and unfortunately, I'm a "most people") think hospice is an organization they call when their loved one is very near death. And there are probably just as many people who fear that actually making that call means they've given up and are just waiting for the end. Some think that hospice means no more tube feedings, no more antibiotics, and certainly it must mean the patient will have to sign a "do not resuscitate" form. Death is imminent, they think, and fear paralyzes them from ever picking up the phone.
None of that is true, my friend.
People who qualify for hospice have been given a prognosis of six months or less to live, based on the progression of their illness to that point. But that is merely a prognosis. Karen says some patients have actually used hospice services for years, because their illness didn't end up progressing as doctors expected. (That's why it's a prognosis and not a guarantee.) In fact, sometimes patients actually get better and are discharged from hospice care - alive! Yes, sometimes they come back into the program later if their health declines again, but the point is, accepting hospice care doesn't automatically mean you're days (or hours) away from death. It also doesn't mean you've given up on your loved one.
So what
does it mean?
2. Hospice is a means of help, intended to offer the best possible quality of life to the patient and the family.
The actual philosophy of hospice care is for the staff to offer patients the best quality of life they can have for as long as possible.
Hospice care is actually made up of a team of workers. Did you know that? Social workers, chaplains, home health aids, and nurses are assigned to the patient and pay visits as often as the patient and family need. That may be just once or twice a week, or it could be daily. They customize their care for each patient.
This team is about more than healthcare. Karen said sometimes what the patient and family need more than anything else is companionship. They may just need company in their corner to affirm them, understand them, and educate them. In fact, education is a big part of their job. Unless you have a medical person in your family, you're probably unaware of how to do even basic care for a patient. From helping someone shift in bed, to giving a bath, to understanding medication, the whole process can be extremely overwhelming to those who do not have experience or training. And hospice can make life easier, not so much by doing these things for you, but by empowering you to be comfortable with doing them yourself.
While many patients are living at home, they don't
have to be at home in order to receive hospice care. Some live in facilities and some (though rarely) are even in a hospital because of the severity of their condition. It doesn't matter where the patient resides, hospice can still help offer education and assistance to the family!
Did you know that some patients who receive hospice care continue to travel around? Some are marking items off their bucket lists, and the staff doesn't prevent that. They help them find caregivers to cover them wherever they're traveling and assist in any way they can.
If and when that final stage of life arrives, the staff transitions its
goal to keep the patients as comfortable as they can be. They allow the patient to be in charge of decisions for as long as possible, and when that isn't an option any longer, the staff looks to the family for direction on how often and to what level of involvement their presence is needed. The staff helps educate the family on end-of-life symptoms so they aren't shocked and undone when they begin to see them. They do their very best to help make the patients comfortable so they can pass away peacefully and without pain.
3. Many people who end up utilizing hospice care wish they would have called sooner.
Once people understand the truth about hospice care, Karen says they often comment that they wish they would have called sooner. They could have received support, education, and a relief of pressure in caring for their loved one. (For example, if the family is caring for a loved one and they need to travel out of town briefly for a wedding or something, hospice can help transition the patient into a facility and make sure everything runs smoothly while the family is gone. A bit of respite is necessary and sometimes beneficial for caregivers!)
You may not know that in most cases, the family doesn't have to pay for hospice care out of pocket. Medicare patients qualify for it, and often those who have traditional insurance qualify as well. (Insurance can be sticky, though, so we won't make a blanket statement on that.) For those who do need to pay for it out of pocket for whatever reason, there are varying charges based on income levels.
And just so you know, whenever a patient does die, hospice helps through that transition, too. A nurse like Karen will come to sit with the family for as long as needed after the patient dies. She will even stay until the funeral home comes and can help bathe or dress the body if that would be helpful to the family. The nurse continues the education by explaining how to destroy leftover medication and answering other questions the family may have about handling death.
I don't know about you, but I have tremendous respect for hospice staff members. They give of their time in all hours of the day and night to be present, and they do so willingly. They walk into all sorts of family dynamics and do their best to guide and support amid high emotions. (Think about it! You know as well as I do that some families can be a real treat on a good day. Throw in the stress of illness, and that treat level can go to whole new places.)
Thanks, Karen, for the work you do, and for helping all of us more accurately understand the work of hospice care and how to embrace it instead of holding it at arm's length!
To see the other "Walk a Mile in My Shoes" posts, go
here!
