End of life - end of life patients only

This subgroup is a dedicated place for members to discuss the particular impact of end of life. This is a group for end of life patients only.

End of Life group

Ellen B - Macmillan

Hi everyone,

I hope you don’t mind me posting here – it’s Ellen from the Community team at Macmillan.

As most of you will know, we’ve been trialing our ‘End of Life’ group for quite some time now. We wanted to ensure that the group was a space for people to openly and honestly share what they are going through.

Since we’ve trialed the group, it’s become obvious that this is a space that is invaluable to those who are using it. We know how incredibly important it is for our users to be able to talk about end of life and the Community team are very much advocates for keeping this space protected and safe for those who want to use it.

We would therefore like to separate out our ‘End of Life’ group so that it is a group of it’s own, and no longer sitting under the umbrella of the ‘Living with incurable cancer’ group.

We know that currently, threads from the ‘End of Life’ group still appear in the ‘Living with incurable cancer’ group and so by separating out the two groups, this will no longer happen. All of the content from this group will stay within the group and there won’t be any noticeable changes in terms of what it looks like – it may just simply be easier to navigate to!

We are planning to make this change early next week. If you have any questions about the above, or any feedback about the group, we would love to hear it. You can get in touch with us on community@macmillan.org.uk.

Best wishes,

Ellen & Rachel
The Community Team

Nicky Nosher
Posted by

Hi Ellen and Rachel

I hope that you don't mind my open comments on this issue although I am not yet very qualified to make them. I am a fairly new member of the incurables group and I do more lurking than chatting as I am at the beginning of this path. I have a few concerns about separating off the end of life group but I am very happy to be over-ruled by them if this is what they want as their needs come first.

I find it incredibly helpful to read the end of life discussions even although I don't contribute. On a practical level I have found out a lot of information about facilities that are available, hospices etc. I have also been astounded at how many members are able to gain acceptance of their situation and pass onto their final stages with dignity and humour and with open discussion of when to stop active treatment. It is different for everyone but I know that as an incurable I will be at that point some time in the future and it helps me, and gives me hope that I will get to acceptance of my imminent death as well and pass with some dignity.

I also think that many of the end of lifers have been chatting to their friends for several years in many cases and have made real friendships and by cutting off the end of life group they are losing the easy access to the incurables group and their friends. And this goes vice versa, we all want to know what is happening to our friends. Although moving from group to group is straightforward it isn't easy to keep up with activity on several groups especially when you are end of life. Also I wonder if you are moving them away so that I can't see their posts, I feel as if I am not wanted in that group and I will inevitably therefore be cutting them off.

I also worry that when my time comes to actively participate in the end of life group there will be very little activity. It is by definition for end of lifers who are dying so the population will often be sick and weak and perhaps be unable to post very often and without regular posters the group will wither away as they die and not get replaced. The lung secondary group is like that, lots of members but hardly any activity.

Finally I feel that death ought to be more widely discussed, this society seems to be allergic to it and once you are incurable you are forced to embrace it as inevitable. I wonder if the urge to bury it away from us incurables is more to do with incurables being offended by being reminded of death rather than the complaints of dying members being bothered by those not yet at that stage. Obviously if I am wrong I am happy to be contradicted. Surely Macmillan was set up to bring the issues of cancer and dying out into the light and let us talk about those subjects that may be taboo among our own families and friends. We are all dying and sometimes embracing that fact can make our remaining days all the sweeter as we learn to enjoy the small things.

Sorry lecture over

A life lived in fear, is a life half lived.
Nicky
Tinalay
Posted by

Hi ,

I was interested to read your comments as I'm very much in favour of separating the two groups. 

At the moment you can find yourself in this end of life sub group by default, so anything that helps to steer people away from the group and content they may find distressing is helpful.

More importantly I think it's essential to protect those of us in the group who do find it an invaluable source of support, inspiration and resources, but in the present format not always a safe place to express ourselves.

Posts have been criticised, members insulted and judged, causing a great deal of distress. The moderators have been quick to step in and have a difficult job, but this is not the place to challenge each other's views and certainly not the place for confrontation.

My feeling is that this needs to be a private and stand alone group so that members are making an informed decision to participate in a safe and non judgmental place. It's really good to hear that you find it helpful and find hope in the group, and I hope you'll still be very welcome.

Tinalay 
Nicky Nosher
Posted by

Hi

I have clearly missed the problems that members have been having and it is of course the wishes of the members that must take priority so you will have no further arguments from me. It is good to know that there is a group like this for when we need it. There does need to be a safe space for people to discuss these very important end of life issues.

A life lived in fear, is a life half lived.
Nicky
Tinalay
Posted by

Hi

I was very interested in what you said, food for thought. You also put into words exactly how I feel about the discussions in this group.

Fortunately these incidents are isolated but very hurtful.

This is your time too. 

Tinalay 
Caitlin2020
Posted by

I'm very interested in all the comments and the move to separate incurables from end of life. I'm moving into end of life, but have to say, once I was told I was terminal, my life and my thinking was changed forever. There is a journey between incurable to end of life, stages that one has to go through. That might be helpful to all, but as time has passed, I can say, I cannot speak to family and friends about very important and private matters, this leaves us in a very lonely space. A kind of no-mans land that you try to negotiate by self. I'm concerned about worrying others with details they may not want to hear yet. Everyone approaches their end of life uniquely, I'm thinking of Frank singing 'My way'. I never understood that song until now. It is a sacred, private trek into the unknown. If sharing my thoughts with others gets me through a bad day, that's then a good day. End of life should be treated with the utmost dignity, respect and privacy to members who are going through that. One day at a time, one stage at a time. I hope it works out for you all.

Kate.  

"An abnormal reaction to an abnormal situation is normal"

"Nature commits no errors."

Viktor Frankl

Caitlin2020
Ginajsy
Posted by

I think members are largely asking Macmillan's definition of 'end of life' or terminal actually is. Also clarification if an incurable can post in the end of life group or not and vice versa? I think once these things are clarified, then there will hopefully not be any upset or confusion.

Final thought, is it end of life patients only or to include carers etc of end of life patients too?

Gina

"There are no perfect people, only perfect intentions" - Robin Hood Prince Of Thieves

"Once more into the fray. Into the last good fight I'll ever know. Live and die on this day. Live and die on this day" - The Grey

"Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great." - Mark Twain

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
Johnty
Posted by

Dear

i think you hit the nail on the head when you say there is a transition between incurable status and end of life, it’s more of a psychological process and it’s not something that happens in one day so you might find your feet in both camps for a while. All I do now is tailor my response to people in the incurables and leave the more delicate stuff to end of life forum. I’m not prepared to give up communication with my chums in the incurables so I think making the split between the two groups more formal is a good idea, so as to avoid them receiving emails from admin that they might interpret as criticism although that is not their attention. I know who is facing his own challenges with his blood cancer has been perturbed by this problem and I want to support him in anyway I can so he feels comfortable in the community, he is such a inspirational person and the incurables forum is such a success because of his contributions. So hopefully he will be back on form soon after having a break from things.

best wishes

jane

 “ A trouble shared is a trouble halved “
Tinalay
Posted by

You've hit the nail on the head, there is a period of transition between these stages which is intensely personal.

My feeling is that any members of the incurables group who feel that they would benefit from the end of life discussions should have access to them and be free to contribute, it just needs to be very clear that it's a stand alone group that you are subscribing to. Some of the upset and confusion has come from members accidentally finding themselves in the middle of content they found distressing.

Unfortunately some of it has also come from a lack of respect towards fellow members which is unforgivable.

 The saying, "We'll cross that bridge when we get to it" works for some, but for me and for my family the way to navigate safely across the bridge is to plan ahead and have contingency plans.

I would prefer that it didn't include carers, as many of us are able to talk freely about issues we can't or don't want to discuss with our nearest and dearest. For me that's liberating.

As always it's good to hear other members thoughts.

xx

Tinalay 
ownedbystaffies
Posted by

I agree with a lot of what has been said. I think separating the groups is sensible, so people know where they are.  I was often thrown in my early days on this forum to find myself on EOL sub-group , and having to return to LWIC group threads, when I thought that is where I was. I got used to it, but at first it was odd. If it is clearer, those who are likely to be disturbed by honest and frank discussions of end of life wont find themselves reading it by mistake. But I also absolutely agree that we need to be able to post and read in both groups if we want to, as there is no obvious step over line in reality. I assume that wont be a problem, so should be no major issues unless I am missing something.

skaila
Posted by

THIS  SUMS UP MY FEELINGS ;)

      

Tinalay
Posted by

Perfect 

Thinking of you, hope you're being very well looked after. Let me know if you're up to a visit but absolutely no pressure m'dear.

xx

Tinalay 
daloni
Posted by

Hi 

I have read discussion with interest. I have already made my views known a number of times - that I’m against separating out the end of life group for all the reasons that laid out so eloquently. It seems to me that there is no consensus about whether to have an end of life group as a separate group or a sub group of incurables as present and that there are good arguments on both sides. I do not think that recent upsets should be seen as adding to the case on either side as that sort of upset could happen wherever the group is - and it will happen again, it’s in the nature of the subject material. 

So can I make a suggestion? Create the end of life group as a separate group as a trial - just as it was first established here. If it does not thrive as a separate entity without the cross over traffic from incurables, then move it back. 

Ellen B - Macmillan

Hi everyone,

Thank you so much for sharing your thoughts with us on this thread. It’s really important that we have your feedback and input into decisions like these.

We initially created the End of Life group on a trial basis, based on feedback from members in our Living with Incurable cancer group that asked for a space to for those closer to end of life to openly and safely discuss their feelings and experiences. Unfortunately, due to technical restraints, we weren’t able to separate out the discussion threads between the end of life and incurable group. This meant that all discussion threads appeared in one place. Sometimes members from the incurable group would be posting/reading threads in the end of life group and vice versa which has caused some upset and distress amongst members.  

The intention behind separating out the groups is in no way about isolating either of the groups, or creating barriers, but simply to allow the end of life group to inhabit it’s own space. We do not intend for the group to be hidden or exclusive of anyone who gets support by reading the group or being in the group and it will be subject to the same processes as our living with incurable cancer group in that members will need to request to join before they’re able to post. This is so we can ensure the space remains as supportive and as safe as possible for those who wish to use it. We will still keep the links between the groups in place so that people are able to move between them more easily.

In terms of how the groups look and feel, the only difference you should be able to see as users is that the discussion threads are separated out and that if you would like to post in the End of Life group, you’ll need to request to join (just as it is currently in the living with incurable cancer group).  

We have not had feedback from users in the carers space that they feel they need a more specific place to talk about end of life and so this space will remain a patients only group.

 your suggestion of a trial is great and we’re more than happy to revisit this as and when the needs of our users change. This Community is for you, our members, and so we will look for your input and feedback to ensure we are supporting all of our members as best we can.

We’re still awaiting to hear a little more about the tech side of separating out the groups – I will update you as soon as I know more.

I hope this has answered some of your questions and allayed some of your concerns. In the meantime, please do continue to post your thoughts here, or by emailing us. This is really helpful for us to see so thank you for taking the time to openly share with us your feedback. 

Best wishes,

Ellen
Macmillan Community Team

Ellen B - Macmillan

Hi everyone,

I just wanted to post a quick update. It looks as though it'll likely be next week that we're able to make the above changes. This is due to some technical errors we want to iron out before we go ahead.

Thank you for your patience and if you've any worries, concerns or questions, please do get in touch.

Best wishes,

Ellen
Macmillan Community Team