End of life care advice

[rainbowbee]

We have received the terrible news that a good friend has terminal cancer. The prognosis is only a few months and he is already in palliative care. It’s been very sudden.
He and his wife have no children and there is no extended family apart from elderly parents on the wife’s side.
The inner circle of friends, of whom I am one, are going to support as needed/asked. I believe the intention over the next weeks is to bring him home.
I have never helped to look after a very sick person before and I would like to ask what to expect in the months ahead. I’d also like to ask how I can best support his wife, who is my friend too. It’s a 20 year marriage and you would never see one without the other. Any advice gratefully received.

He will only be going home with a care package in place. this should include a hospital bed and other necessary equipment as assessed by an occupational therapist. There were will also be a team of carers in place and hopefully your friend’s care will be overseen by the local palliative care team. we also had the district nurses on call if medication had to be given. Rather upsettingly, the GP prescribed an end of life package of medication and the pharmacy staff were crying when I went to collect it. What you can do is be there for his wife - keep her company, cook food for her, sit with him so she can go out and get a break.

People can live for years with a terminal diagnosis. It doesn’t mean his death is imminent. Has his wife shared with you any time frames they may have been given.

Unfortunately, as in my post, the prognosis is a few months. It's very sudden and sad for all.

🙄 If ever there was a time to carefully read the OP this is it.

Play it by ear, let them tell you what you can help with. It's fucking hard.

I’m really sorry I didn’t give your post my full attention. I really should of. There is a book people always recommend which I always meant to read before my Mum reached this stage (she was on pallative care for years) but just kept putting off. I will find the name of it tonight.

Is there a Macmillan or a Maggie's centre near you? Both would welcome you and be very happy to answer your questions

The book is With The End In Mind by Dr Kathryn Mannix.

Thank you, I'll look that up. I don't know if he'll be drugged or lucid. None of us are medics but there should be a team.

It will depends on his level of pain. He should have end of life drugs prescribed and ready to given my the pallative care or community nurse.

When my best friend was in the final stages in the hospital he had a morphine driver. The batteries were running low and we alerted staff to this. They kept forgetting to replace them and it stopped working, then nobody could find new batteries. Do ensure that batteries for devices such as this are available if they are in use.

Thank you; that is something I would never have thought of.

Be specific about the help you can offer - what, when, where etc. They're already dealing with so much to absorb, that working out how to respond to more vague offers of help can feel like too much, as the burden of decision making lies with the recipient.

Most people remain fairly lucid until the last few days of life, even if on high doses of morphine, which he is likely to be. (Can be different obviously if cancer has spread to the brain.) As things progress he will be up and about less, and will sleep for more and more of the time. He is likely to lose interest in food, which is something that often worries family and friends, but really it's just a part of dying and doesn't affect timescales one way or the other.
Sitting with him so his partner can get a break is probably the most helpful thing you'll be able to do, and will make a world of difference to her. Letting him talk about dying if he wants to, or not at all if that's his preference. Managing visitors - there will likely come a time when he won't want anyone around bar his nearest and dearest, and you can help to facilitate that in a sensitive way. Can be a good idea to have one close friend updating other friends on his progress (maybe via a WhatsApp group), so his partner isn't burdened with lots of queries every day.

My friend's condition has progressed and he is now in a hospice. Does anyone have any advice in regards as to what to expect or do? The speed of this has been frankly overwhelming for us all.

Sorry to hear this, OP. I've worked in a hospice as a junior doctor - do you have any specific questions? He will be very well looked after.

Sorry to read this hospice care is wonderful.

As far as advice goes, just be there for him and his family as much or as little as they would like, if you’re visiting then keep his family in mind and let them have the time they need with him. I found it very difficult to ‘share’ my Dad when his friends wanted to visit in his last days (he was in ITU with a brain injury so slightly different in that he wasn’t aware of who was around him) and I could only cope with having other people there in small groups for short visits as I just wanted to soak him in as much as I could, for as long as I could.

Are there any practical things you could help with in the background, such as walking/feeding their pets, pitching in to make sure his wife has some easy food in the freezer when the time comes for her to go home, things like that?