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, Mark99 “Hospice 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?
 

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 

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