DNR and other stuff

I have no experience of that which you are going through Katgi but it does seem to my uneducated self that a liberty is being taken with you.

Hopefully someone on here can put you right otherwise let the Mcmillan helpline advise you. Don't struggle and suffer on your own. 

thank you

Hi Katgi,

I'm sure others on here will respond as they recover from their holiday.

I am not in the exact same situation, but have some similarities. Last April I had had one round of chemo (after my 6th or 7th recurrence) and got really really sick while away visiting family. Went into the ICU, was on a ventilator and all that for 10 days, it was bad. I had sepsis. I was so deconditioned from the infection and not moving for so long, it took 1.5-2 months to walk and longer to start to get back to normal.

When I finally got home 2 months later and saw my oncologist, they informed me that my cancer had sort of exploded, and they were not recommending any more treatment. Furthermore, they said if I get sick to the point that I would land in the ICU again, basically I shouldn't go. If I weren't so comfortable and familiar with this doc, he might have said I should "consider not going," but he knew my values and so gave direct advice.

So I won't go through that again. Because even if I come out the other side, I'd really never get better, and the cancer would kill me fairly quickly after. And I hated it, when I woke up I could barely move and couldn't talk really bc the breathing tube damaged my vocal cords. I don't want to go through that again if I'm not going to get a looooot of extra time, and quality time, afterwards. 

That's my story, for background. Now, I have some questions: My cancer was growing so fast after my ICU stay that he gave me "weeks, months, maybe a year," so not much would be gained by going back in if it happened again. I wonder what you prognosis looks like? I know you can't rely on it totally, but it would make a really big difference to me.

Also, is this your oncologist who is advising you to not go to the ICU? If not, I'd want to talk to him/her about it, I don't trust other docs to really understand cancer like this.

Also, are you on treatment now? And what were you there for in May? Sorry if you said all this in previous posts. Was it similar to what is going on now?

Another thing, there are different levels of care in ICU. Mine was the worst of course, but my father was recently in the ICU just for closer follow up after heart surgery. He just needed to be where the nurses watched him more closely and had a lower patient load. I guess what I'm saying is, can you choose to go to the ICU for some things (like maybe watching your IV antibiotics closely?), but refuse, say, intubation, being resuscitated, artificial nutrition, etc?

Perhaps I have missed the point though. Are you saying just that you were reeling from being given the info that they expect your body not to overcome some things? I was shocked when my doc discussed future ICU visits with me. I was on the mend from the last one, and didn't understand how my body could be healing if it were that fragile and close to death, if I were dying. It turns out my cancer did slow down a little, but also, what I didn't understand was that I wasn't right then dying. They were just preparing me for difficult scenarios to come. But just because you have bad cancer that is no longer treatable or curable, doesn't always mean you are "actively dying" yet. I was told I will feel fine for a time, then slowly start developing symptoms. It's been 6 months since my doc first discussed this with me, and I am now starting to really notice symptoms.

About feeling ill toward the very end, I have read up on this a bit. Multiple docs and books have told me that dying is not a super painful, uncomfortable process, at least not these days. People don't die gasping for air and in pain, there are treatments for that. And if you are that uncomfortable, they can sedate you, exactly as you said. They don't do it unless you are uncomfortable, but they have it in their arsenal. So if that is a concern, I hope this reassures a little.

Sorry so long, but you bring up a lot of important issues that I'm grappling with right now too.

Hope you are feeling better!!

Patricia

Thank you so much for your reply, its been really helpful. In answer to your questions, I have head and neck cancer with all the initial spots of activity on hold after immunotherapy. I have an active tumour on my bottom lip which hasn't responded to radiotherapy and so I am trying some chemotherapy. 

In May I was in ICU for sepsis but they didn't have to put me onto a ventilator and I was only there for 2-3 days. Once out and on the cancer ward I recovered very quickly and went home within the week. 

Having head and neck cancer means that at present it isn't actively killing me because it hasn't infected any major organs. As and When it does then it will behave like any other cancer of the area it's in. If it doesn't spread I don't know what dying will be like.

Hi Katgi,

I am glad you found Patricia's reply helpful as I think it encapsulates a lot. Like her I think you should clarify with your oncologist what aspects of ICU would be helpful. I think we all should, as we are all on an escalator that goes at different speeds and sometimes speeds up, and sometimes slows down. I have made clear to my children, with Power of attorney that when the time comes, I do not want resuscitation and I would include intubation in most cases. It is really hard to cover all possibilities, but my thoughts are that if I am already close to dying, then dont put me through it twice especially if my heart stopped due to cardiac arrest or similar. It is good that you dont have spread to other organs and hopefully chemo will work and keep it in control. Sounds like you are a way off from dying, and the decision not to send you to ICU for an infection does need an explanation. Hope you are ok now.

Like PatriciaV, I have read about death and dying to take away my own fears about the process, and it has eased many anxieties. The usual reccomendation is "With the end in Mind" by Katrhyn Mannox a palliative care doctor ( apologies to regulars on here, since I recommend this every few months, I dont get commission honest).

Good luck with your treatment and hope you dont get more infections from your PICC line.

xx

Thank you, I have looked up the book and will have a good read. It may help my family as well although we've nursed my dad till the end, my sister nursed her husband till the end and I nursed my husband until the last 24hrs wen he was in a hospice. It's not all though we are complete novices

I think that the whole business of agreeing to a DNR is very difficult. At first I thought this was a good idea and when I was hospitalised last Christmas I had the palliative care team round and one very persistent doctor urging me to sign the Respect form. In hindsight I know that I wasn't in a good place at the time and I did sign it. But later, one of my surgeons [ I had three lots!] came to me one evening before I was due for further surgery, begging me to remove my permission. If anything happened in the operating theatre, it was explained to me, their hands would be tied and they didn't want that. So I removed it.

Thankfully, I'm still here and have recovered a lot since then. My GP phoned and we had a chat about re-instating the Respect form, but I had already decided not to - not unless I feel that I've got to the point of no return. He was actually in agreement with me so that decision has been deferred until I feel it's necessary to have it in place.

There is an interesting study that I read that was published in the BMJ (I think) or maybe The Lancet, which looked at the attitudes of physicians and medical staff to patients with these notices on their files. It found that treatment options on offer appeared to decline with patients who had a DNR or similar and that the attitudes of staff were subtly altered by this. I think we have to recognise that this is a possibility that may affect us. In a world of shrinking resources and priorities even more so. I think this whole business is one of the hardest things I've ever had to try to come to grips with.  Rainie x

Gosh Rainie, that has really made me think. I have spoken with my oncologist and my file has a note that they will take me to ITU but won't go as far as intubation, which is fine with me as I see that as saving a rather nasty end. On the other hand I know I may get sepsis again and have been able to recover from it quite well and know now that I will be treated. I don't think I have come up against difference in the way I have or haven't been treated medically yet but I will certainly be a bit more aware.

Thank you

Kate