[mum2jp]

*Sorry this may be sensitive to some*

My grandfather has lung cancer. He is now at the stage wherehe is too weak for treatment and has been referred from his oncologist to a palliativecare team. The nurse has been coming to the house for a couple of weeks but hehad to wait until today to actually see the doctor. The nurse has recommended oxygenfor him at home as his oxygen levels are low when monitored. So we thoughttoday would be a medication review (pain meds mostly) and having the oxygen organized.

Anyway Mum went with him and my grandmother to the appointmenttoday and said she found the doctor to be really awful. He basically said thatthey don’t just give oxygen to anybody because you can only have it free for 3months so he would need to speak to his cancer doctor about how much ‘time’ hethinks he has. Mum told him that paying for it after the 3 months was not anissue. He then asked Mum and my Grandmother in front of my Grandfather (as ifhe wasn’t there) if they would be putting him into palliative care. When mumtold him the plan was to care for him at home he sighed and told her that itwouldn’t be that easy they will need two people full time to care for him. So basicallyNOTHING got done today. So my question is who makes the decisions about what heneeds? The home nurse has recommended oxygen; he needs it to be comfortable.Can this be refused by the doctor? If they won’t provide him with oxygen athome they are basically forcing him to go into hospital.

I know this is an upsetting topic especially for thosehaving been through it but if anyone would be willing to share experiences ofhaving palliative care at home and has any advice about dealing with the systemthat would be much appreciated.

This post has been edited by mum2jp: 30/11/2012, 10:41 PM

[adl]

You don't mention where you are? We had my Dad at home and a friend nursed him privately for us

My GF was a palliative care nurse through Western Area Health services, in Sydney, its divided into geographical areas ...she had patients referred to her , so I think you call the Health Services in your area but surely his oncologist can refer you to these services?

I am sorry to hear about your grandfather and hope you sort it out so he may enjoy his remaining in days in peace and comfort at home

[Becky Thatcher]

Hi OP, I also have a parent with cancer and I am also a nurse.

Recently there have been huge changes about oxygen and a lot of health staff have not kept up. Respiratory physicians are downright against indiscriminate use of oxygen and accept oxygen sats in the mid 80's and even then at a low dose, like 1 litre nasal prongs.
Nurses are the worst and we think everything would be fixed with a good blast of oxygen.
Recently I have had to rethink on patients with chest pain, if their oxygen sats are OK, they don't get oxygen , but this is VERY slow to catch on.

Doctors trump nurses in decisions and many oncologist/palliative care docs can seem very cold. I guess most of them have zoned out as a coping mechanism.They are human though under all the veneer.

Pain relief is the main goal not really oxygen.

PM me if you need.

This post has been edited by LindsayMK: 16/11/2012, 08:40 PM

[mum2jp]

We are in Sydney. He has been having a nurse come out but she said the doctor would have to order the oxygen as the doctor is the one who review meds ect. He has moved house moving to another area so after today Grandma and mum are thinking about asking for a transfer of his care to the hospital closest to them. It will save them traveling for appointments too.

[Becky Thatcher]

A hospice for palliative care is a good idea.

[mum850]

We are in Sydney. He has been having a nurse come out but she said the doctor would have to order the oxygen as the doctor is the one who review meds ect. He has moved house moving to another area so after today Grandma and mum are thinking about asking for a transfer of his care to the hospital closest to them. It will save them traveling for appointments too.

Hi mum2p

- ask the home palliative care service if then can lend you a concentrator
- ask them or the pharmacy if you can hire a concentrator
- get him admitted to your local palliative care facility for a brief symptom management admission, they will arrange appropriate oxygen on discharge
-ask your nurse to take it to his//her boss to take it "upstairs"
- go higher up to the hospital.network that rejected your request.

You have not received a good service from this doctor and not all pall doctors are like this. Your request to get O2 to care for your grandfather at home is not only reasonable but should be applauded and supported.

also, politely, put a complaint in writing.

[pukeko walking]

Hi OP, I used to work occasionally in community palliative care. It's important to find out if the doctor was palliative care specialist. Were they actually part of the same team that the palliative care nurse is in, or were they a medical specialist or gp? I would try to clarify this as sometimes medical doctors are not as up to date with palliative care guidelines as those who specifically work in that area.

If they were a palliative care specialist I would try to discuss with your Grandad's nurse what alternatives were planned to address breathlesness (such as morphine etc), and whether these alternatives need to be discussed further. Talk with the palliative care nurse. They will know which avenue to take to ensure your Grandad has the most comfortable care - and if they firmly believed he needed oxygen to be comfortable, they will know who to approach next.

best wishes

[Chchgirl]

My dh passed away in July, and only started going downhill in june. I had palliative care nurses come around regularly, but I can't tell you about oxygen as we didn't use it at home. I can tell you the oncologist and palliative care doctors were through Liverpool hospital in Sydney and were awesome.

The palliative care team was through Braeside at Wetherill park and I pretty much had total input and choice with everything. I ended up getting a bed for him in hospital as it became too hard at home, and he only was in hospital three days before passing. I was very fortunate to have the choice of all the decisions myself.

I don't mind answering questions at all, I wish someone was there to tell me all this..

This post has been edited by Chchgirl: 16/11/2012, 08:52 PM

[MrsLexiK]

A hospice for palliative care is a good idea.

As someone who has gone through this recently I can see where the dr was coming from. It is 100 times harder then you think it is going to be, as hard as going to palliative care to visit every day is, it is nothing compared to what living with it 24/7 is.

We couldn't get oxygen for my relative we just had to call an ambulance if he needed it, it happened a few times, sometimes he would be admitted for a few days other times he would be let out almost straight away. We had nurses come around every x amount of days to just check on things. But you need at least 2 people 24/7 there. You need to ask yourself if your grandad fell would your mum and grandma be able to help, what if only one is there could they do it by themselves?

I am sorry you guys are going through this.

[mum2jp]

Thanks for the replies. Passing everything onto mum as she has been going to appointments with them. If possible we would like to organise what he needs without him having a stay in hospital. He and grandma are very clear he wants to spend his time at home with her. They are scared if he goes into hospital he won't come out. The palliative doctor they saw today will see him again after he reviews with the cancer team. I think they are hoping if they get his care transferred to their local hospital where they now live now they might be lucky and get a more suitable palliative doctor.