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What does hospice and palliative care mean to you? 
Créé par moderator | modératrice
03 mai 2013, 13 h 06

couple in hospital bed hugging
For many people “hospice” and “palliative care” are unfamiliar terms. Families who have received care from people working and volunteering in hospice and palliative know first-hand what these terms mean.

For community member, Mark99Hospice allowed me to be the caregiver, husband, and champion for [my wife].” In his post After a Year a Question about Hospice, he talks further about his hospice experience and asks, “Do you wish you had had a discussion about palliation and hospice sooner? Would it have improved your experience?” 

Hospice volunteer and community member eKim writes, “I have noticed that every time I arrive at hospice that I am enveloped in an overwhelming atmosphere that is palpable.  I’ll call it love – that is not too strong a word for me.” 

The world as a whole would be a much better place if it exhibited a fraction of the love and compassion on display in hospices,” says Tian, a palliative volunteer and one of the founding members of Virtual Hospice’s online community. 

See more responses that community members shared with Pooka when she asked Hospice started-what do I expect? 

The Virtual Hospice team wrote this article explaining What is palliative care?

Let's add your stories and experiences to help describe hospice and palliative care to people who may be hearing these terms for the first time. 

In your experience, what does hospice and palliative care mean to you?

Réponse de JennJilks
13 mai 2013, 18 h 56
We had this discussion during training.
I still think of hospice as an organisation, usually best delivered in a building other than a hospital.
And palliative care is a care strategy designed to ensure death with dignity. 
There is a continuum of care in Canada: home care, retirement homes, long-term care, hospice and hospitals. In fact, 60% of us do not die in hospital, but it is a difficult journey for loved ones. 
Réponse de NatR
14 mai 2013, 8 h 59
hospice to me means a focus on the end of life - and as Jenn and others have said, a loving and dignified way for people to spend their last days And hours.

As a retired front line caregiver, and having covered the concept of hospice and palliative care in my course taken in 1999, (after having worked off and on in the field for years) - I was/am still disappointed that so many who are at "end of life" are still very dependent on family not facility for this comfort.

Often those I saw spending their last days in palliative care ( in a nursing home facility) really needed the support of family and close friends by their side.

I am glad to know that many supportive forum users on this website are experienced in giving this type  of care.  My wish would be that everyone gets this wonderful end of life experience.

It is needed and should be 100% - thanks to those who spend so much time caring for others
i have spent many a shift trying to care for my residents and wishing I had an second  self to devote to bedside palliative care for a dying patient - resident.

We spend a lifetime often caregiving for those around us, speaking from my personal point of view as a mom, grandma and caregiver.

Men also caregive - and it's comforting to hear about husbands like Mark99 who could take such a courageous role in caring for his wife.  It's an amazing accomplishment and a Gift.

thank you to all who give this support


Réponse de eKIM
20 mai 2013, 3 h 22

Hospice – Where People Go To Live  - Ekim 01

Some people ask me, “How can you volunteer in a place where people go to die?”  My answer is always the same. 

“Hospice is where people go to live.  The act of dying for every human occurs in the time that it takes to breathe our last breath – a matter of seconds.  There are days, weeks or months in hospice/palliative care that proceed this final moment.  People come to benefit from palliative care and/or live at hospice in order to have the highest quality of life that palliative care can provide.”

A note from Ekim 

What does hospice/palliative care mean to me?  I thought that I would answer this question in several short parts. 

Please share your comments, personal observations and experiences here regarding palliative care, whether at hospice, hospital or home. 

The purpose is to provide some positive anecdotal evidence, so that someone new to the hospice/palliative care environment will find comfort as they read positive, enlightening and enriching stories.

I have been a “Resident Support” and a “Spiritual Care” volunteer for the past three years.  Other than my family, it is the most rewarding experience of my life.

-        Ekim 

Réponse de Springday
25 juil. 2013, 22 h 05
we took mom into hospice with the idea of having her pain managed and then going home. A month later she is still there...15 lbs lighter and still in pain when awake and comotosed from the narcotics the rest of the is horrible to see her suffer like this...and my perception is that they are just leaving her to I have really mixed feeling about hospice right now.
Réponse de NatR
26 juil. 2013, 1 h 11
Hi Paige,

i want to tell you thait your moms situation doesn't sound comforting, not at all.

i dont have the answers but I expect that others will respond with steps you can take to improve your moms experience

i can understand your feelings being mixed - I would agree with you.

please speak to someone in the hospice who can answer your questions and make your mom more comfortable and you feel better about her care, her medications, and her comfort.

my heart goes out to you
Réponse de Springday
28 juil. 2013, 4 h 59
Hi NatR,
I have tried talking to the nurses but it's like they are getting irritated with Mom and think she is obsessing over her pain. I know mom very well and i would agree that she would be a somewhat challenging patient in that she requires a lot of attention , but it's not like shes in there with a broken wrist! She has tumors near nerves and is in pain...And just things like making sure she always has ice chips and encourageing her to eat...they just drug her up and leave her. I wish I could be there all the time but I can''s not realistic at this point. I live three hours away and come every week for 2 or 3 days, but it bothers me that they seem frustrated with her :(
Sorry for my rambling... 
Réponse de NatR
28 juil. 2013, 21 h 07
Dear Springday,

that must be so disheartening to feel blocked by the staff, to feel your mom is not getting enough comfort in her final days.  

Being 3 hrs away from your mom is also hard.  I am hopeful that one of our other forum members will be able to offer you some ideas.

is there a way of getting home care to come and visit your mom each day? Someone to check up, to get her ice chips, to chat a bit?  I know that's difficult and sometimes too costly, but if your mom is entitled to the service, it would give you some peace of mind on a day to day basis - as you can't be there each day.

the response you to doesn't sound like a good one to me. there must be someone over the nurses who can hear your concerns and offer some ideas.  Hospice should be more than just medication given.

having woraked in long term care - I know that time is always short when it comes to clients, but for anyone in hospice I would think there must be a solution  that will put your mind at rest and positively affect your moms experience.

keep on asking questions til you get the answer you need 
I am hoping maybe eKim can offer you some insight 

sending you a hug, sorry I don't have a better answer 
hugs NatR

Réponse de eKIM
29 juil. 2013, 2 h 16

Hi Springday

 NatR has given me a gentle nudge to chip in, here – thanks NatR

 To be honest, I have not commented simply because I cannot relate to your experience.  I have been a hospice resident support volunteer for 3 years now and I haven’t come across a similar situation.  I attribute this to the excellent staff at our hospice.  We have about 200 volunteers who come in for hospice shifts and community home visits.

 Our hospice has 6 nursing/PSW staff for 10 residents.  Even with this excellent staffing ratio, the needs of the residents can exceed the abilities of the staff.  When this happens, the staff will ask a volunteer to sit with a resident, to provide company, conversation, to help eat, drink, apply mouth care and any other simple (but necessary) act that we are trained to preformed.

 Every hospice, including the one that your mother is in, is dedicated to the comfort and care of each and every resident.  You will never get purposeful sub-standard care.  It simply goes against every principle that a hospice believes in.

 There can sometimes be a misunderstanding or miscommunication regarding the care expected and the care received at a hospice.  These issues can ALWAYS be sorted out by having a full discussion with the management/staff/social workers etc at the hospice.  All I can say is keep on asking questions until you get the answers that make sense to you, Springday.

 I wish you the very best.  - eKim

Réponse de NatR
29 juil. 2013, 2 h 33
Thank you eKim for your help and insight - I am glad you wrote.

we are all sending our best wishes toward Springday
appreciate it

good night,


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