Palliative Care - sorry if wrong topic.

[alistron1]

My MIL has been ill for about 10 years with COPD. She's been in and out of hospital, has been in intensive care several times and we've been prepared on a few occasions for her to go.

Before xmas she was diagnosed with lung cancer, she had flu over the xmas period and we thought that she would go then - she was really ill.

Since then she picked up (btw she has been adamant all along that she wants to stay at home) and has been 'well' (for her) but she has been losing a lot of weight and getting frailer. Over the past 2 weeks she has gone down hill. She had a scan 2 weeks ago which indicated that the tumor in her lungs has grown and all of a sudden decided to go on holiday with FIL to cornwall. They came back after 2 days 'cos she was ill (vomiting) since then things have deteriorated.

This past week she's been confused, her O2 sats have been at 70% and on friday night she was so confused and scared that she was ringing around the family to have people with her (FIL useless) Yesterday morning she said that she wanted peace and to go into the hospice (the local hospice are involved and visited her after xmas) however, she needs a GP referral to go into the hospice and her GP is not available until tuesday.

A locum/OOH Dr prescribed diazepam over the phone yesterday to take the edge off the terror/anxiety and my DP and his aunt are providing round the clock care at the moment.

Today she is alert/out of bed a bit...she's not eating/drinking though and veers from manic activity to being terrified. And she's obsessed with sorting out her kitchen (eg buying new white goods etc...we are just going with this and doing emergency runs to comet)

What can we expect? Is it likely that at this stage palliative care/hospice support will kick in? We think that she is now 'dying' she's changed over the past week. We just do not know what to do. However, DP's sister (who is on hols at the moment and hasn't seen her mum for a week or so) thinks that it's just another infection and that all will be well.

Are we over reacting in pushing for palliative/hospice support? We just do not know what to do, what to expect. She is indomitable and has fought and fought against her illnesses for the past 10 years, but IMHO this week she has given up.

Again apologies if this is in the wrong forum, but I couldn't find anywhere else for this, and I am just gutted by it all really. My poor DP and his poor mum.

[alistron1]

A nurse is coming out on friday, I'm not sure if it is a Mac nurse or one of the community team - yesterday was DP's off day in the rota and I was on the school run when the GP called. We are fairly certain that things are progressing now, there is a marked deterioration day by day.

Many thanks for the advice, and so sorry that you have all had to go through this.

[zeno]

Hi Alistron,

so sorry you are all going through this. I suspect palliative provision varies a lot from are to area, but I can share recent experience with you.

In our area hospice is only for actual end of life care, and was not available for palliative care until literally a few days before the end. The person who makes the decision is the Macmillan nurse in conjunction with the GP surgery.

Our Macmillan nurse was not terribly useful until the very last week when she became very attentive. She judged what was happening, got things in order and arranged palliative care, and told us that it was likely to be very very soon and that it was time to sedate Mum. At this point she was in near constant pain and distress, not eating or drinking for over a week, visibly changing, not able to move herself around in the bed even, and had entirely lost interest in the doings of the world.

I was very impressed with her judgement in knowing when it really was the end. We had been through many times thinking "she's getting near the end" and feeling that they ought to be doing more to help her in a palliative way, but this type of care really didn't kick in until the very end.

My advice would be to keep pressing the surgery to see her, and to get onto Macmillan and make sure they are visiting more frequently to keep an eye on her condition. There is a certain amount of trust you will need to put in them, that they will know, from experience, when the time is right for palliative care.

All the best to you and yours.

[BettySwollocksandaCrustyRack]

When my mum was diagnosed with terminal lung cancer....actually one year ago today......it was the Macmillan Nurses who sorted her out with the hospice care. Can you go down that route at all??

Make sure you get it sorted one way or another, we wouldnt have been able to cope if we hadnt had the help of the hospice and the Macmillan nurses, they really were invaluable.

[alistron1]

When MIL got the cancer diagnosis in december and was told that it wasn't treatable the GP referred her to the hospice. They came out in January and talked her through the options available (i.e that she could be cared for at home)

Since then there's been no contact with the hospice 'cos she hasn't needed it.
She has seen her GP/Clinic/Consultant regularly. We got her to a lung clinic appointment on Thursday (nearly 2 weeks after the scan) because we were so worried about her condition.

We rang the hospice yesterday and even though she is on their books it is her GP who needs to say 'yes, she needs you now'...the locum/OOH Dr wouldn't make that call yesterday, he advised waiting for the GP to see her on tuesday.

DP is going to be phoning the surgery tomorrow morning to try and make some progress. The OOH/Locum Dr yesterday wouldn't even come out to see her.

[ohmeohmy]

There will be GP cover available before Tuesday if you want that referral. It is quite normal now for hospices to offer various services including short stays to sort out current issues not just very end of life care. Worth finding out what is available and what will be of use now. Sorry you are all going through this.