Shouting from the rooftops

by Andrea Powell, HPCCR Electronic Communications Manager

Lori Williamson and her husband, Michael

Knowing about hospice is (in a weird, messed up way) kind of a curse.  Because once you understand the benefits and you see first-hand how comprehensively amazing hospice clinicians are, you get even more frustrated that there are so many misconceptions about it.  Hospice hastens death.  It’s only for the last days and hours of life.  Your loved one will sink away in a drug-induced haze the minute they come under hospice care.  No.  Wrong.  False. 

When you see what a monumental difference hospice makes, you feel an urgent need to share everything about it.  You want everyone who has a seriously ill loved one to look into hospice immediately, even when you know they aren’t yet ready.  Even when you know they’re scared.  And you want to yell from the rooftops about how no one should be scared because hospice care can actually extend life, and that it supports the entire family, and the hospice team will help everyone feel prepared, and it will make what could be a terrible experience actually wonderful and peaceful, and, and, and. . . . 

I could go on for days.   

I myself knew very little about hospice care when I joined Hospice & Palliative Care Charlotte Region.  But in the five years I’ve worked here, I’ve seen a wedding at one of our hospice houses, met veterans, interviewed widows, heard testimonies, and cried buckets of tears.  I’ve cried because the stories are, yes, devastatingly sad, but also because, in their own way, they are excruciatingly beautiful.  The people I talk to could not be more passionate about the experiences they’ve had with hospice.  They could not be more appreciative of the sacred time they had with their loved ones.  They now know what I know.  And they have become our staunchest advocates.

Below is an email that we received last fall from Lori Williamson, whose husband, Michael, was under the care of Hospice & Palliative Care Lake Norman.  

We give life with a chemotherapy schedule (days 1-7 were chemo with side effects,  followed by days 8-14 in isolation because of low blood cell count) a score of ZERO.

We give life without chemo (which included five holes of golf, a ride in Cobra Sports Car, and a huge family party that included five sons, some wives, and some grandkids, even watching football and baseball games at a crowded sports bar as a family) a score of TEN.

I just want everyone to know that hospice care doesn’t mean I am sitting besides Michael’s bed all day long, holding his hand.  He is up and moving, walking stairs, going on outings, and enjoying life with his family every day.  It just means that we can call and have hospice professionals available 24/7 to help us with everything we need.  The nurses and social workers from Hospice & Palliative Care Lake Norman come to check on us, prescription drugs arrive in the mail, and someone is constantly refining the game plan to improve pain management.  I am so grateful we had so many friends who understood about the benefits of hospice and encouraged us to begin immediately.  What a gift it has been!

Michael eventually moved to Levine & Dickson Hospice House – Huntersville and spent his last days there.  The transition of his care was seamless and Lori maintains that without the support of her hospice team early on, she wouldn’t have had the courage to fight for comfort care over curative care.  She would have missed out on some of the most wonderful moments she ever had with her husband — namely slow-dancing with him in their newly-renovated kitchen, a project Michael undertook during the months he was under hospice care.  He died exactly a week after that last dance. 

So do you see what I mean?  How frustrating this is?  Hospice care is not meant to be a “best kept secret”.  We don’t want it to be some sort of exclusive “club” where more members reduce its appeal.  We want everyone to benefit from this exceptional service.

If you know what I’m talking about, I hope you’ll join us on our conceptual roof.  Maybe we can shatter those misconceptions about hospice at last.  Maybe, just maybe, if we all shout loud enough, we can finally be heard.  I’m willing to get a little hoarse.  Are you?

Explore posts in the same categories: advocacy, awareness, education, end of life, hospice, Hospice & Palliative Care Lake Norman, Levine & Dickson Hospice House

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5 Comments on “Shouting from the rooftops”

  1. David Bayer Says:

    Wonderful article … well written … and informative! I hope many will learn about what Hospice “IS” … thanks for the great article.

  2. Lawler, Carol Says:

    Hi Andrea,

    This was a great article. I felt the passion in it.

    Thank you!

  3. D Someya Reed Says:

    Misconceptions? “No. Wrong. False.”??? Hospice is only as good (or bad) as the people working in it, managing it or both. Employment in hospice does not appoint one to “angel” status…to believe that is the definition of “hospice arrogance.” To say that hospice care “can actually extend life” is the same as the studies that conclude that cancer patients can live longer if they don’t accept treatment. No two people are alike so all is statistical supposition.

    Whether or not the all too common retort that “the good outweighs the bad” in hospice is true (and that’s open to debate as SO much goes unreported and there are no established standards between hospices), whether or not you (as patient) are fortunate enough to get a hospice worker(s) for which this truly is “a calling and not just a job” (and really, most are just jobs) to “yell from the rooftops about how no one should be scared” and that hospice “supports the entire family, and the hospice team will help everyone feel prepared, and it will make what could be a terrible experience actually wonderful and peaceful,…” does a huge disservice to your readers especially when not balanced with the findings of the OIG (Office of the Inspector General) on hospices (both for-profit and non-profit) which were found to be substantially lacking in following even the minimal rules they are supposed to follow under COPs (Medicare’s Conditions of Participation, currently 2008) both individually and in conjunction with nursing homes. What you are saying is that hospice is wonderful just because it’s hospice. THAT is No, Wrong and False! Just as no two people are alike, no two hospices are either.

    Patients and, perhaps more importantly, their personal caregivers and families (they aren’t the one dying) should be wary of these strangers that come into their homes with promises they know they can’t keep. Hospices like to offer a “dignified death” but no one can seem to agree on its definition. Or with inaccurate information…you can’t get addicted to morphine so you can take as much as you need. No, you still can overdose.

    You wouldn’t tell people that all nursing homes are the same. You’d suggest they investigate several. You wouldn’t tell people that any doctor will be the right one for them. They’ll need to talk to several doctors before deciding or try one out for a while. End-of-Life doesn’t necessarily offer that luxury. Time is not on your side.

    However, some communities don’t have a choice between hospices. Some have only one, maybe none. So is this the reason it’s seems to so many hospices and their supporters that it’s OK to say hospice (as a general rule, but don’t say “as a general rule”) is great? If you only have one to choose from then it must be good? That sounds more profit/growth oriented than patient oriented to me.

    At this point, you’re likely thinking…this guy had a bad experience with hospice and yes, you’d be right. But not just bad and obviously, as I’m not the one who died, my experience is nothing compared to the experience of the patient that did. Staffers in Kathleen Sebelius’ office (HHS in Washington, D.C.) said that the story is “the most horrific story of abuse against a patient by a hospice in the history of hospice in this country.” Would they or anyone else do anything about? No. Why is that?

    At the request of that patient, I have been researching the hospice industry for several years now. What I have found is not always wonderful but sometimes appalling, disgusting and sickening. I have been called all sorts of names, been hung up on, had lawyers threaten me and politicians ignore me. I’ve had people try to break in to my home and urinate on my front door. My writings go unpublished. My written comments (blogs) get buried. To be fair, I’ve met some people (not hardly enough) who appear to be truly dedicated to their patients. I would like to hope that those numbers will increase.

    The patient’s request was a simple one…to do everything in my power not to let what happened in that hospice happen to anyone else. You’d think I’d have droves of supporters. But, as I was told in my state capitol, if you say something bad about hospice they will come out of the woodwork to shut you down. That’s true because that’s what’s been happening.

    But a promise is a promise. You don’t just keep the easy ones. If you want to know details please email me. You have my address. I have no problem sharing.

  4. […] Lincoln Ely describing how hospice helped his family as his young daughter, Erica, passed away; a wife’s testimony about how hospice is so much better than chemo; a grieving husband who came to speak at our staff […]

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