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Palliative care and death

donnellysdogs

Master
Messages
13,233
Location
Northampton
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People that can't listen to other people's opinions.
People that can't say sorry.
Hi

Morbid thoughts perhaps to some, sorry.

I have terminal cancer, grade 4B in liver and lungs.

Has anybody previously had any experience of care in hospices, as an independent insulin diabetic?

I’m still to see the consultant that oversees my hospice (next Monday) but have had to fight to get any answers from anybody about my care before I get taken in, to be able to confirm 100% that is the where I will die.

NHS England guidelines for palliative care end of life is for last few days to have just one injection per day (either tresiba or lantus). One blood test per day.
I have spent 6 weeks and horrendous angst trying to get answers about my care being individual to me. I have minimum of 3 injections per day, to even just lie in bed (2 levemir and one fiasp). Plus corrections, eating.

I’m appalled at the actual guidelines from diabetes.co.U.K. And nhs England. It’s frightening. I know I will be unconscious but I don’t want unconscious from day 1 of hospice when if my admission is timed well, I should get 14 days of good care until the end comes.

One day in a hospice changing from levemir to tresiba would comatose me within 8 hours.

Does anybody know of any other insulin independent that has negotiated their care in a hospice? Have got rest of life sorted out and death but this is a huge juggle to me.
 
Hi @donnellysdogs ,

Hopefully someone can help regarding your wishes on palliative care.

I felt I needed to just give you my heartfelt regards..
 

DD, I'm really saddened to hear your news. Having observed some of your journey from afar I had hoped things were going better for you. I hope you can achieve clarity on what you need, but I just wondered if you would be able to visit the hospice beforehand to discuss things in person?

When my Mum was very unwell, she had a couple of brief hospice stays, to sort out meds and perk her up (such positive experiences for her and those around her). Those visits totally changed how she felt about the future in general.

She was not living with diabetes, so it doesn't help with your specifics.

Look after yourself.
 
So sorry for this news @donnellysdogs . I have been full of admiration for the way you have dealt with your health issues over time.
I cannot comment , specifically, on end of life care for people with diabetes, but have experience of loved ones needing hospice care. The patients were always treated as individuals, and were integral to determining their own unique care plans. You must make your wishes known to the consultant when you see her /him, and get an agreed plan. There should be flexibility in that plan, too.
I hope you can find some peace, and contentment. Hospices do offer specialised, precious care.
 
Hi DD, like AndBreathe I was hoping that things were getting better for you, so I am both shocked and sorry to hear your news. I don't have anything useful to say, I just wanted to say thanks for all the support you have given me in the past. I hope you get the answers you need to give you peace of mind.
 
I’m so sorry to hear your news. My dad was an insulin dependent type 2. He too had a respite visit a couple of months prior to his passing, post a high risk surgery to help recovery and adjustment. That surgery that took him from a sudden and immediate situation to giving him the few extra months to make his plans and give us as a family a little precious extra time. I’d been abroad for years immediately before this and it is a huge solace to me we had those weeks, though it’s never enough. During his first stay he was allowed to continue with his normal insulin regimes. By the time he returned for a 2nd recuperative stay (which sadly became for his final 3 weeks in the end) his insulin needs were much much less than they had been and were adjusted downwards with his consent but still monitored. The doctors were excellent at discussing his needs with him and us and respecting his wishes. I hope you can find the same peace of mind from this meeting and have one less concern as a result.
 
I dont know if this helps, but my friend, who went into hospice several times before the end, said that the hospice medical staff were very different from the hospital staff, listened to her needs, and adjusted her meds in a far better way, as they are the experts on this stuff. Maybe talk to them? sending hugs.
 

Thank you. That has relaxed me a little.

After some heated email exchanges with my diabetic consultant, he finally agreed to talk to me!! However, he didn’t draft letter to me first before sending it to the palliative consultant! One insulin injection missed off totally and doses for another wrong too. After further exchange telling him of the errors he says he has now sent correct details to consultant that I hopefully get to see on Monday.

When told 26/8 this year, you would not believe the 6 weeks of hell from dr’s and consultants regarding their discovery and pushing me against my wishes to have biopsy done. No way, been suffering 18 months during lockdown and asked 4 times for scans/camera to Gp/consultant and refused. Know my body is so hugely weak and far too I’ll to put through anything being done.

Had palliative care nurse for 5 weeks and she kept telling me to wait til 1st Nov. Just wanted me to sign the respect DNR form quickly.

After A&E visit, got told return on 26/8 and they loaded me horribly on drugs.. and kept increasing them. Then I thought to myself, beside severe pain, I was not crippled with all over pain, sick, nausea 24/7 so what changed so quickly? Drugs!!
Still on very low dose MST tablets but got rid of the liquid opioids, anti sick and another… just on very high strength CBT oil for last two weeks, one drop per 4 hrs under tongue and all pain gone. All sick gone, all nausea gone and just left with my own body getting weaker.. don’t know what the consultant will say to CBT but the palliative nurse said she knew nothing about CBT oil. Got a good “home made CBT oil too.

Enjoying eating mushy food again. I couldn’t even eat 1/2 side plate of grade 4 in hospital or home until I stopped the excessive qty of drugs that they sent me out with!!

I haven’t really got much hope that a consultant will know any different too. At least I am very grateful that your dad had good care.

Been to hospice but only allowed to talk to receptionist. The palliative nurse wanted me to go in to hospice two weeks ago to trial me on more new drugs andI said no, I don’t want to be away from my hubby and two dogs for 3-4 days minimum! As it is, it was their nhs drugs making me feel so rubbish!! I think I just have to keep myself aware that very few nhs drugs have ever worked for me and If it’s my last two weeks I may just have to have what is thrown at me…

Had such dire problems with consultants and gp’s after initial finding cancer this time, and not being allowed face to face’s during covid, I did write complaints to nhs England, cqc, Healthwatch, pals, health Secretary and keir starmer. Dead people can’t complain but it helped me to think my complaint may help just one person get better treatment in future.
 

Thanks, always hoped for hospice care but without diabetic consultant seeing me in 2019 them as I tried saying to him. How can he advise palliative consultant without speaking to me? He didn’t even know how many insulins I am now on (was 4 insulins), routines, ratio’s anything!! I wanted to be prepared as NHS guidelines are so bad. If a palliative care consultant doesn’t understand complex T1 diabetics, the easiest choice for him to make is the NHS guideline choice!!

I am worried and just wish that dr’s during all of my past two years had considered the individual. Been very tough at times.

Been a rough, tough couple years with health and to be honest, I’m actually quite glad in my own way that I can just let go of living… the worst part being my hubby, and two dogs.. the two dogs are my biggest sorrow at leaving.., they won’t understand, but I just am glad that I know they can both visit me together in the hospice. That was important tome. I just feel sorry to be leaving them both behind.
 

Thanks for the help and taking time out to write, helps me a lot. Just managed to sort out so much, so quickly since finding out and the hospice care is still back ground worry to me..
I will get somewhere, I hope, not sure what other things I should be asking onMonday. One thing for sure after last 8 weeks experience with NHS drugs again, I will hope, they are willing to listen to use of CBT oil.
 
I’m so very saddened to hear your news @donnellysdogs, I am holding you in my heart and prayers god bless x
 

Hi @donnellysdogs,
I am so saddened about this news, and a final battle on what you know is the best treatment for you from your experience.
You have inspired and cajoled me, correctly pulling me up when I was a novice, teaching and learning how to be polite and respectful for those who are often confused, and need help. And above all else, your presence and knowledge, your contribution to this forum, I cannot but admire your kind responses.
May you find your idea of heaven, they have no idea, the surprise they are getting.
My prayers and my thoughts will be with you.

I have not had experience of hospice, but I helped my brother and my mother when they were in hospital, the last few days on hospital watch. It's different but the care and attention is designed to assist you and be a comfort.
This last bit, is to pass on, what I learned from a tragedy.
Be nice to those around you, they will still be here and trying to accept this big change in their circumstances, not having you there, is something that will never go away from them. Your post about the dogs, is indicative of the state of absence.

Stand your ground.
 
I am also very sad to read your news but you seem alligned to what is coming but it makes me mad that the death pathway would be planned without the patient’s wishes front and centre. I can only suggest you fight every inch because you know what you want and it is after all about you. I hope you will reach a plan that you are comfortable with. Sending you every best wish though it sounds completely trite.
 


DD, my Mum's experience of hospice care was incredibly positive, and the whole atmosphere of the place was calm, upbeat and all about easing and brightening lives.

Mum used to comment she was offered a glass of sherry before dinner, and wine with if she wanted it. Her nails were tended immaculately and her hair coiffed equally so.

Mum was allowed to do what she wanted there. if your hospice's philosophy is the same, they will be keen for you to be comfortable in which ever way works for you. I expect they would draw the line at anything illegal, but sounds like you're not in that arena anyway.

I admire your stoicism and thank you for thinking of others during this time. Voices such as yours need to be heard.

I'll be thinking of you.
 
Hi @donnellysdogs, I am so saddened to hear your news. I have been aware of your health issues and always admired your strength, you have been an inspiration to many people on here. I have no experience of hospice care but am sending you positive thoughts and best wishes.
 
Don't really have anything to add, as all hospice care I've dealt with for relatives was Dutch. The bottom line though was to make the last days as comfortable as possible, physically and mentally. It's more of a calling than many professions I've seen.

Anyway... I'm sorry. For being ill, and for the hoops they're making you jump through, even now.
Hugs,
Jo
 
My husband had terminal cancer, although not diabetic. The hospice reached out to him, sending hospice at home nurses, inviting us in to see the hospice so that he could decide if he wanted to go there, and arranging for one of their doctors to review his medication. At all times they were respectful of his views and requests, and clearly cared very much.

I hope and trust you will find the same in your hospice, and all the peace and serenity being in a caring, supportive place can give you.
 


I am sorry that you are so ill @donnellysdogs, and yet having to fight to get the medics to agree with your wishes for your end of life care. It is quite shocking that NHS Consultants have not listened to your wishes. I admire your writing to NHS England, cqc, Healthwatch, pals, health Secretary and Keir Starmer. I hope you get a response soon, and to get someone to help you now. It is not too much to ask to be given the insulin regime that you know suits your body, even if you become too weak to do your own injections. I do hope that you can get the Hospice consultant to agree for you taking your CBT oil, and that you are offered drinks of water right to the end.

Lots of love from me.
 

@donnellysdogs I’ve been wondering where you’ve been all this time, and when I read the title .. I couldn’t read anymore I’m so sorry you’re going through such a hard time! My heart completely sank I’m sorry I can’t offer any advice on end of life care but I absolutely agree that each care plan (personalised care) should be tailored to help you - from what you like to eat to how many blood sugars tests that you need. I have worked in care, and I know they stop medication for those who are on end of life care, but for type 1, they’ll have to keep assisting you with your insulin, but the question is how many times.

I’m sure that there is something on having the capacity to say you can do your BG tests and injections yourself - leaving the pens in your hands and hypo treats near by. I’m only saying this because I absolutely adored an elderly person who was also type 1, she has capacity to do her BG tests and injections, she only needed assistance with mobility.

Sending hugs!
 
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