Palliative care - questions to ask

[Polly0494]

We have an appointment today with a palliative care nurse who works in one of the hospices in our area. My mum was diagnosed with stage 4 lung cancer last Monday, for which there is no treatment available. I know the nurse will review pain meds and ask about mum’s wishes. What else should we ask? This is the first person we will have spoken to since last week’s diagnosis and I’ve felt quite lost waiting for this meeting.

[Hidden]

That is good question I was thinking off myself I would resist anything given word palative AS am sure it’s one of them things you get into and can’t get out.

Take that baby in hospital ... if baby was not unde palative care they could of took him where they like.

I would ask about legal statues bases of palative care and who decides law or them and how do get in touch with them 24/7

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[sassy59]

How sad to face such a diagnosis on behalf of your dear mum. I would ask about quality of life under palliative care as that’s important to know.

I do feel for you and send lots of gentle hugs to you and your mum. Xxxx 😘💕

[corriena]

Such a sad time for all your family. Sending huggs and prayers for you all. I think it will revolve around what your mum wants to happen. Dose she want to be cared for at home. Who will provide this care. If it comes down to you can you get help. You can not provide care 24/7 remember they are thear for you to. Also have you got power of attorney to help deal with mums finances. One less thing for her to worry about. Dont feel you have to make final disions today give your selves time to discuss and think about whats best for you and mum. Nothing is written in stone and you can change your minds at any time. The palliative care nurse will explane your options and give you time to think about them.

[peege]

Hi, I'm so sorry it must be so difficult. My mum spent time in a hospice for respite in Suffolk. The staff and volunteers were absolutely wonderful, gentle, kind, understanding and absolute experts in caring for the terminally ill AND their loved ones. I recall Mum got very annoyed when the vicar popped in, she was very anti religion of any kind so pretended she was gaga, deaf or asleep! So there's something to clarify, whether or not your mum would appreciate spiritual comfort. Also the DNR, Do Not Resuscitate angle. In the past I've visited hospices for work and they are very special, overriding atmosphere is of love, genuine care and peace - unlike a hospital. At the interview they will explain a lot and ask questions, you will naturally have your own queries popping up so don't worry, perhaps take a note book? Thinking of you and your mum. P

[mrsmummy]

If you have time do ring the BLF Helpline for advice on areas to cover. 03000 030 555.

[Kristicats]

I think probably the best advise would come from the BLF helpline after discussing with your mum what she would like ideally. Very best wishes to your mum you and your family.

[Dubba61]

Hello Polly, sorry to hear of your sad news. i lost my Mum last year to the same thing. She stayed at home and the Palliative Care Nurses were, wonderful, very kind. they came in 4 times a day, One of us would be there for the rest of time. Mum chose to sign the "do not resuscitate", she must have discussed it at her Docs appointment, because she came home with it signed. It was her own choice. And she passed away very Peacefully. My thoughts are with you at this sad time.

[Polly0494]

I am overwhelmed at the many responses. Thank you all for taking time out to offer advice. Mum signed the DNR form today and various referrals have been made to other community healthcare teams who may be able to help. We spoke about mum’s prognosis too (this is the first time it’s been broached) and whilst mum needed to know she has more than a matter of days, it shocked her to learn that actually it might be ‘months’. My sister and have taken her away for a few days and we will try to make it nice break, probably with tears and laughter and some new memories too!

[Annie31 in reply to Polly0494]

Have a wonderful time and as a mum of two daughters, I know she'll feel very loved and will appreciate this quality time with her girls!

My girls took me away for a mother's and birthday treat last year when I really wasn't very well and we so enjoyed it. They rented a cottage in my old home town, one that had been an ancestral bakery in my mother's family so it was extra special. We enjoyed three days and nights of eating our favourite food, drinking wine, watching old favourite movies, playing games and just enjoying each other's company and as you said made yet more memories! They thoroughly spoilt me and showed me they loved me as much as I love them!

Time is a precious commodity and as far as I can tell, it doesn't make any difference how much or how little as long as it used to the fullest. Better to have five minutes of wonderful than a lifetime of nothing special! Enjoy!

[Dietrech]

So very sorry for you and mum. A friend of mine was told she had at most 3 months to live but actually lived well for 18 months then a few weeks in the wonderful local hospice. Please tell your mum different people live for differing months and she could well outlive that prognosis big time!

I nursed for 38 years and dealt with more cases of terminal cancer than I can recall, and many people lived far longer than the time they were told they would. People need hope, even if it’s that they MAY live much longer, because different people deteriorate at differing rates. I pray you all have much more time to enjoy each other’s love and company. Xxx x

[GLITZY75]

Palliative care encompasses many things-- most of which are aimed at making sure your mom is comfortable, most of the things involved are personal choices some include ( not limited to:

Making sure she is comfortable -- medications to relieve pain, ease breathing, and also to ease anxiety.

Spiritual/Religious counseling if she wishes.

Social Work Issues, does she want to be at home, hospital, hospice etc.

Living wills /health care proxies- meaning does she want DNR/DNI that sort of thing, who does she want to make decisions for her?

Does she have final wishes with regard to her body etc.

These things all become part of "the plan" trust me they are all very difficult discussions to have. I just went through it.