When should he go to hospice?

[TNTTony]

Hi everyone,

Longtime lurker, first time poster

My father was diagnosed with motor neuron disease in 2009. He's now 35, has very limited control of his body including his neck. He has problems with breathing [he's forced vital capacity is under 50%]. He can still eat and talk though. He feels that he should go to a hospice/palliative care. We will be speaking to a specialist and community nurse soon but I just want to know what are the criteria that is needed to go to one of these places. He has told me that he does not wish to be resuscitated.

Thanks in advance

 

[Alyoop]

It may be that not many people on this site are from Australia. Most are from USA & Canada. It may be a good idea to get in contact with your Gp or MND society. They may no the criteria.
Good luck
Aly

 

[TNTTony]

Thanks Aly. I don't mind information from outside Australia. I want to know as much as possible and be good to know what other countries do

 

[Katie C]

Generally referral to hospice requires a prognosis of no more than 6 months to live, although that can be flexible. I know in Glen's case, he was approved for 6 months, but would have been reevaluated every 6 months had that been neccessary. He did not enter a hospice facility but received in home hospice care.

 

[chriss]

We are sorry about what you are going through with your dad. I don't know the exact criteria, and I think it can vary a little between units but admission is usually reserved I think for very end stage. Though maybe some units will do short respite. I am not sure about Sydney but think it may be similar set up to Melbourne and you can have Palliative care nurses visit at home. We have palliative care visiting us. When they start a dr will be involved and they will prescribe any medication required e.g morphine to help with respiratory failure, drugs to help with anxiety and so on. If needed the palliative care nurse can organise the drug administration through a syringe driver.

You say your dad has FVC below 50%. There is a machine called a BiPAP or VPAP which can assist. Have you contacted your local MND association? They helped us with various equipment like a hospital bed, a full roho mattress, sling, nebuliser etc. They can also sometimes organise referrals.

Please don't hesitate to ask if we can be of further help,

Chris and Shane

 

[pjm220]

TNTT Tony, Our insurance policy dictated the criteria for hospice referral. When my FVC went below 35, I was referred to in-home hospice. Mabel it's the same situation in your neck of the earth. Good luck to you and your father. Slugging through the forms, criteria and documentation can easily be a full time job. Keep us posted, please.