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    Hospice and Palliative Care for People with ALS

    Hospice and Palliative Care for People with ALS webinar hosted by Les Turner ALS


    Please join this webinar tomorrow, Thursday, November 11 at 12 pm CT (USA), and feel free to share this invite with anyone who may benefit from the topics covered.
    By attending the webinar, you'll discover how to sensitively ease the burden on family members who may otherwise be left to figure out what you would have wanted at the end of your life.

    #2
    As a general FYI to forum members: the term "hospice care" in the US purely means end of life care, generally in the person's home, is rarely a physical building and isn't the same as the hospice movement that we're used to on these islands, so expect much discussion on end of life.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      US Hospice can be in-home or at a Hospice staffed by medical professionals. Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing the quality of life and mitigating suffering among people with serious, complex illnesses. I think it covers much more than end-of-life issues, but I need to go there to be sure.

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        #4
        In the US, hospice care is end of life only, which is different to here. Several members might have been tempted by a webinar on hospices and I know that's not what they would have expected as a focus - fair warning.

        I didn't refer to palliative care.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          The link totally explained that already.

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            #6
            Trying to understand what you said about Hospice Care not being the same. Found Hospice UK, which seems to match what they do in the US. Can you explain the difference you noted? Thank you.

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              #7
              Originally posted by Johnny5 View Post
              Can you explain the difference you noted?
              As you are much more able bodied than I am and can physically type, I'll leave you to do any research which may satisfy your curiousity.

              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                From Hospice UK:

                //Quote

                What we do


                We work for the benefit of people affected by death and dying, collaborating with our hospice members and other partners who work in end of life care.

                //end Quote
                //Quote


                “Hospice care aims to affirm life and death. It means working with and within local communities to tailor palliative care around the needs of each adult and child with a terminal or life-shortening condition, whatever that may be, and extends to supporting their carers, friends and family before and after bereavement.

                "Hospice care is provided by multi-disciplinary teams of staff and volunteers who offer expert support that places equal emphasis on someone’s clinical, physical, emotional, social and spiritual needs with the understanding that everyone will be different.”

                //end Quote

                Hospice foundation of America:

                //Quote

                Hospice is:
                • Medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life.
                • An interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family.
                • Care that addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life.

                //end Quote



                So there is no difference.

                Thank you for the clarification.

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                  #9
                  These folks would not do these free seminars online if it were not of use. Please consider this opportunity if you have not already attended to the issue. Eyes wide open and informed is the best approach to what MND does. Be prepared :-).

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                    #10
                    Johnny5 can I ask why you are pushing so hard on this topic. No one should be badgered into doing anything.

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                      #11
                      I was bumped from my hospice as I wasn't dying fast enough. 😉😂😁🤗xxxxxx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #12
                        matthew55

                        wow that's just crazy.

                        Not surprised, dad has been discharged from his dementia consultant back to the GP.

                        Really pissed off as he was only seen yearly, what is the hardship.

                        He is not cured and get carers twice a day. He has survived 14 years with it and still on his dementia medication.

                        Thomas gets 3 hours hospice at home, so I can leave the house. Not had it for 2 weeks as he is always last to be allocated. as the are just sitting keeping him company in case he needs to toilet or move position. Or has one of his scary coughing fits.

                        All the best Matthew

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                          #13
                          I did not feel it was badgering Bowler. I was replying to negative posts on the issue. MND and ALS Associations are mostly in agreement with hospice and palliative care to the best of my knowledge. Giving negative and false information to forum members about this webinar is negative. Meanwhile, the opportunity to review all of this information from the comfort of your home is beneficial to those of us dealing with this issue.

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                            #14
                            Johnny, you have missed the biggest and most important difference, which I mentioned in my first reply to you, that is, in the US, people enter hospice care if, and only if, they have 6 months or less to live. This is not false information and, if you reread what I wrote, I was not citing anything about what is involved in the care, merely the 6 month criterium. Here is the relevant wording from the same site you took your quotes:

                            When is it time for hospice?

                            Deciding when it's time for hospice is difficult and should be discussed with loved ones and a physician. It is generally time for hospice when:
                            • The patient has 6 months or less to live, according to a physician.
                            • The patient is rapidly declining despite medical treatment (weight loss, mental status decline, inability perform activities of daily living).
                            • The patient is ready to live more comfortably and forego treatments aimed at prolonging life.

                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              I'm with you 100% girl 💖😁😘🤗xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                              Comment

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