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Posts Tagged ‘hospice’

In a meeting last week a colleague handed me an article written by a women who was shocked to discover the cost of care for her husband in his final weeks of life.  Her husband died of a cancer that was not curable.  From the article it appears that he had the best of care with nothing held back.  In hindsight the wife muses that wouldn’t it have been nice to spend that money to feed thousands of starving children.

The colleague gave me the article because I am in hospice and she felt that I would agree.  It was a compelling story and I pondered the author’s opinions for days.  I gathered my thoughts and observations and am sharing them with you today.

As Americans, we can be fiercely independent.  We want and demand the best in care.  We want it now, we expect it to be safe, and we believe in our chances for success.  Physicians are also Americans and they want the same things for themselves and their patients.  We are strong we are invincible and we succeed.

We also feel free to sue if things do not go as we expect.  Our television air waves are filled with lawyers suggesting that you sue for experimental treatments gone wrong, any kind of wound, or any imagined wrong.  It seems to be the American way.

We are a death denying society.  We willing admit that live is short, live it to the fullest, but we do not really think that death applies to us, at least not until we are over 90.

I do believe that end of life care is often provided in ICUs or expensive hospital beds when the location and level of care is futile, though I know first hand how difficult it is to tell families that it is time to seek hospice.  Not to do another scan.  Not to try another treatment.  People fly loved ones all over the country and world for experimental treatments on hope alone most times, even when they have experts in their own home town.

Is it possible to tell a patient and family no to another possible treatment when there is a 2% chance that it might work?  What if the chance is 5% or 10%?  We all hear about those miracle cases.  When is enough, enough?  We spend allot on care at the end-of-life because we have the tools.  Man will use the tools Man has.  Is it right?

I believe that we need to be honest with patients and families about the disease process and our current tools to deal with their disease.  We must, as providers, admit to what we can do and what we can not do.  We are not yet able to prevent death.  At some point all body systems will fail and we will not be able to forestall the inevitable.  I also believe that we need to use our expertise, experience, and wisdom to help our patients have the best death possible.  We help mothers and fathers bring babies into this world and we need to help patients and families leave this world with the same dignity and celebration of life.

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Sometimes I forget that not everyone in the world knows what Hospice is or feels as strongly as I do that it’s a necessary step at the end of someone’s life. Unfortunately I got my reminder last week at the visitation of a family member who died of cancer and was at a hospice for the last few days of his life. The first thing my cousin said to me after we hugged was, “Hospice was such a blessing – everyone there was amazing and now I get it. I don’t know how you do it.” When I finally got to her mom for a conversation, she looked me in the eye and said, “You need to come raise funds here in our town for a hospice like the one we were in.” A woman of action, with a new-found passion, she is.

I offer an overview of the Hospice philosophy monthly to our new Volunteers, and it’s always a good reminder for me – pulling me back to my purpose. I was reminded this week not to take for granted that people know about hospice, and I’d like to give our readers my 30 second overview – just as a reminder.

  • Hospice is about the patient – they deserve to have an acceptable level of pain (none if that is possible), be included in decisions regarding their care and be treated like the living, breathing person they are – not a “dying” person
  • Hospice recognizes that everyone is different – whatever I find comforting is not what the next person is going to appreciate and vice versa.
  • Hospice takes care of the loved ones, too. When you lose someone you love, it’s one of the hardest things ever. Hospice can help the grieving just as much as they helped the patient.
  • Dignity matters in hospice. Enough said.
  • Hospice lets you be a daughter, wife, or grandchild again, when you’ve been acting in the “caregiver” role for too long.

I don’t know if this will help anyone discover hospice earlier or believe in it rather than think it’s giving up. I hope it does. Everyone deserves dignity and compassion and I believe it’s especially important at the end of one’s life. The hospice philosophy is to take care of the whole human, and that’s the kind of care I would want if I were nearing the end.

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Last week, I came home from working out with the personal trainer, and I bawled my eyes out. You see, I’d been working with a really great gal who pushed me hard and “got” my challenges and gave me inspiration and goals to work towards. And when I went to my session, I found out she no longer worked there. And that I would have a new trainer, who I’d never met before. 

The week before that, my parents moved from my childhood home, and my cat (who lived with them) had to be put to sleep. I spent a whole weekend holding back tears (and letting them out) and feeling a little bit empty. 

I’ve been a little bit crabby for about a month now. I mean, who gets so upset about their trainer getting a new job? 

Sometimes all of the little losses in our lives add up, making it hard to focus, and function at a high capacity. Things change, like not knowing my parents’ address by heart, knowing that this is their home, not mine, and not having my Ginger-cat ignore me as soon as I step foot in the door. And when all of those losses piled up, a seemingly insignificant loss (my trainer leaving) put me over the edge. 

There is a quote, and I have no idea who it’s by, that goes: 

Be kinder than necessary

Everyone you meet

Is fighting some kind of battle. 

In my own defense, I ask you to remember this when you’re interacting with others. We have no idea what’s going on in other people’s lives, and what might seem like “nothing” could actually be the last straw in a series of tiny losses. And don’t ignore the little losses in your life – they might catch up to you at the gym!

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The Lord Alfred Tennyson’s famous quote has been getting me through the last few days. It describes how I feel about the loss of our beloved dog, Chewie. I never knew how painful it would be to lose her, though I am so grateful for having loved her.

 

Chewie was the first dog our family had. A beautiful Golden Retreiver who came into to our lives 13 years ago at the age of 6 weeks. We cried as she did, when we adopted her and took her from her parents and the loving breeder. She was one of nine, born of two stunning champion Goldens. She was a white puff ball, who quickly captured our hearts.

The boys named her after their favorite Star Wars character and she certainly had the coat to match. What did not match was the name. She never chewed a single item. The one time she found a baby booty from a guest, she walked up to me with it in her mouth with the, I have something in my mouth for you, “please take it” look.

She only retrieved in water, where she would retrieve a stick to exhaustion. On land not a lot of retrieval occurred. We always suspected that is was just to warm for a dog with her coat.

Our dog was more of a princess than a Chewie I believed. I often thought we named her incorrectly. She pranced on walks. She greeted each and every human or animal. No amount of training would change that. In puppy school she, unlike any other dog in class, would inch over to the nearest puppy like an excited kindergartner. On walks she owned the neighborhood. Neighbors knew us as Chewie’s parents long before they knew our names. I know that one of the reasons there are so many Goldens in our subdivision is because everyone hoped they would get a Chewie.

She truly became a member of our family. She shared all of the moments of our lives for 13 years. Wherever we were she was. Nothing got past her. If we were sick she sat by our side and she was in the mix for all of our celebrations.

She not only loved us; she loved everyone. She consistently answered our door, though never barked, because she was quite anxious to make new friends. We believe she thought Halloween was her special holiday.

Over the last year, her hearing worsened, her vision decreased, she stopped climbing stairs, much like a comparable human at her age. She lived well beyond the ordinary lifespan for a Golden. She lived a long healthy life. We took her on two final road trips this summer. She rode shotgun between us as she always did, she had her ice cream cone, she hung her head out of the window. We knew they were her last trips and Jim and I savored every moment. When she stopped walking her last three days our family provided hospice care.

Together we spent her finals days and hours and now together we grieve.

I had no idea how painful it was to lose a pet like Chewie, but I go back to the the sentiments of Lord Tennyson. My life was enriched by her presence and as difficult as it is to let her go, I am so grateful for having loved her.

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the last cell

Image by micmol  via Flickr

In the documentary Serving Life, one of the hospice volunteers remarked that he always heard hospice being described as a way for people to die with dignity, but he thought hospice was more of an expression of love.

Many of the volunteers and the lead hospice nurse in the documentary remarked that hospice will change you. And the documentary showed the tremendous change and growth in morality for these volunteers.

The documentary featured a hospice atLouisiana’s maximum security prison atAngola. Since 85% of the prison population have sentences of over 95 years, most of the inmates will die in prison. The Warden of Angola prison felt that a prison should do more than teach a prisoner skills, but should also teach them morality. In an effort to teach morality, he brought a hospice program to the prison, where other inmates serve as hospice volunteers. These men are trained to care for the patients—bathing, feeding, providing friendship & support, being there to sit vigil at end of life, and cleaning and preparing the body for burial.

Some of the volunteers make it and continue to volunteer, whereas others drop out of the program. The ones that stay remarked that they felt incomplete or like something was missing on the days when they did not go to the hospice. It made me think about how special our own hospice volunteers at Horizon are—the dedication and commitment they have to our patients and the remarkable abilities they all possess.

It made me reflect on the incredible impact being on the Hospice team has on every one of us—the staff and volunteers. It made me realize what my priorities are in life. I don’t put off things I want to do or things I need to say anymore. And it bought a new level of gratitude for everyday and every person in my life. Many people assume that Hospice must be depressing, but the Hospice experience is truly about connecting to one another and living life to the fullest.

For more information about Serving Life, go to http://www.oprah.com/own-doc-club/Serving-Life-Trailer.

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I’ve written before about how incredible our volunteers are at Horizon, and I’m inspired to do so again. Yesterday was our annual volunteer recognition picnic, which this year was themed around the Wizard of Oz. What a great opportunity to put a lot of awesome people in a small space.

Our Development Coordinator asked me to say a few words and tie in my thoughts to the Wizard of Oz – I had fun with this, and here are a few of my thoughts:

• The entire movie is about Dorothy’s journey home. I think this is much like a volunteer’s journey – they know from the beginning what their goal and mission is, however it’s the twists and turns along the way that make volunteering rewarding.

• We discussed the three traits of a volunteer: Thoughtfulness (the Scarecrow), Courage (the Lion) and Love (the Tin Man). I realized that the thoughtfulness that every volunteer has is that initiative to start, to make the phone call, to reach out to an organization with their time and talent. The courage volunteers show is the commitment they make. Not everyone can give time and talent of themselves, so when volunteers make that promise, it is a courageous move. And finally, the love that our volunteers show is the magic, the act of touching someone’s life, the personal impact they make on our staff and patients. These three traits, when put together equal service. It’s an incredible combination.

• Our agency has grown significantly in the last year since we opened the In-Patient Hospice unit. It’s the volunteers who have taken us “over the rainbow” to a whole new level of service. Their flexibility, dedication, passion and personalities allow Horizon to go above and beyond when it comes to patient care.

All in all, I’d have to say I’m thoroughly impressed by our group. All with different stories, backgrounds and drive, but all coming together for a common purpose: Hospice. I thank every volunteer from the bottom of my heart, and I can’t wait to meet new volunteers as they join our family. If you are interested in becoming a volunteer, visit our website at http://www.horizonhch.org/volunteer or call 414.586.8341.

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Country singer Sara Evans performs to a capaci...

Image via Wikipedia

Sometimes a song just says it better. Sara Evans captures the healing steps after a breakup perfectly in her song “A Little Bit Stronger”. I think the first two paragraphs of the lyrics could be describing any type of loss. At times we miss these small steps toward healing because we are still engrossed in the intense pain, but like the song says “even on my weakest days, I get a little bit stronger”. Acknowledge yourself for all the small ways in which you have gotten a little bit stronger since your loss, whether it’s a breakup or a death of a loved one.

 

A Little Bit Stronger lyrics
Songwriters: Barker Aaron Gayle; Harbin Ronald Steven;

Sung by: Sara Evans

Woke up late today and I still feel the sting of the pain
But I brushed my teeth anyway
I got dressed through the mess and put a smile on my face
I got a little bit stronger

Riding in the car to work and I’m trying to ignore the hurt
So I turned on the radio, stupid song made me think of you
I listened to it for minute but I changed it
I’m getting a little bit stronger, just a little bit stronger

And I’m done hoping that we could work it out
I’m done with how it feels, spinning my wheels
Letting you drag my heart around
And, oh, I’m done thinking that you could ever change

I know my heart will never be the same
But I’m telling myself I’ll be okay
Even on my weakest days
I get a little bit stronger

Doesn’t happen overnight but you turn around
And a month’s gone by and you realize you haven’t cried
I’m not giving you a hour or a second or another minute longer
I’m busy getting stronger

 

And I’m done hoping that we can work it out
I’m done with how it feels, spinning my wheels
Letting you drag my heart around
And, oh, I’m done thinking, that you could ever change

I know my heart will never be the same
But I’m telling myself I’ll be okay
Even on my weakest days, I get a little bit stronger
I get a little bit stronger

Getting along without you, baby
I’m better off without you, baby
How does it feel without me, baby?
I’m getting stronger without you, baby

And I’m done hoping we could work it out
I’m done with how it feels, spinning my wheels
Letting you drag my heart around
And, oh, I’m done thinking that you could ever change

I know my heart will never be the same
But I’m telling myself I’ll be okay
Even on my weakest days
I get a little bit stronger

I get a little bit stronger
Just a little bit stronger
A little bit, a little bit, a little bit stronger
I get a little bit stronger

 

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