Hi all,
Charlotte from Leukaemia Care here. I'm doing a bit of research on palliative care and I was surprised at what I found (I won't explain why as it may spoil the point of this question!)
So I'm curious. Without googling or looking it up in any other way, would you all mind telling me what do you think palliative care is? And at what stage of a cancer journey would you expect to have a conversation about palliative care, if at all?
Thanks.
Hiya, from experience with my mums cancer and now my dads it’s basically end of life care. This can be arranged at the beginning of diagnosis where nurses can come into the home and visit. They can arrange future medication and care, 24 hour care at a certain stage and equipment etc and also they can visit the patient for a chat and update. Sometimes nice to see a different face and chat and support the family .
Hi Charlotte, I have no personal experience of palliative care but I believe it to be when treatment options are exhausted and it is thought any more procedures or treatment would be unproductive and uncaring. I believe it should include continually talking this through with the patient and their family to agree how best to facilitate the way forward and palliative care as the patients needs change. Then palliative care would start either in hospital, a hospice or at home. It would involve a patient being cared for, made as comfortable as possible, being given all manner of pain relief and care till the end of their lives. It might involve adapting home conditions and having medical aids. Hopefully this 24 hr care should be facilitated by 24hr nursing care unless the patient and family wish to care for the patient themselves. Ideally it should also support the family through the palliate care and then through the bereavement process. Thanks for this opportunity.
Hi guys,
Thanks for your response. I was curious as I too believed it meant end of life care. Actually, palliative care just refers to pain management or control of symptoms; essentially any medication or treatment that doesn't cure your illness. It is used in end of life care but it isn't the same thing. So actually many people experience palliative care without knowing; for example; chronic leukaemia treatment is actually palliative as it just suppresses symptoms rather than cures the disease.
Does this surprise anyone? And do you think more could be done in terms of helping people understand what the difference between palliative care and end of life care is?
yes I think much more could be done on this. Treatment intent is vital. People don’t understand whether a treatment is aiming for a cure or a remission or just to control symptoms. But equally in Haematologica cancers in my view even in the best centers most of the emphasis is on the big stuff not necessarily the things shredding our lives like fatigue and anxiety. Addressing such issues is often left to the information and support service / counselors who are perceived as optional.
I believe much more attention should be given even in watch and wait to understanding the symptoms bothering that patient and seeing what can be done to help them.
I agree. I requested palliative care by the pcp instead of the onc. He agreed that I should be receiving the services, but onc did not want to authorize it. Like you stated, there are side effects related to CLL that warrant the palliative care services. I think that the onc's see it as part of hospice instead of aspartame of symptom management services. I would like to see it offered earlier, even perhaps during watch and wait.
Hi,
As a nurse working in haematology I see too many patients and doctors reluctant to involve palliative care as they all think that this means approaching end of life. Nothing more wrong! Sometimes I’ve seen patients really struggling with chemo side effects like nausea and as soon as palliative team are involved, very lately, symptoms get controlled and resolved! There’s a massive stigma around palliative care! I think we just need to start a proper campaign to educate healthcare professionals and patients about what palliative care really is. I will totally support this! ☺️
I totally agree, thank you very much for your feedback. I will of course let you all know if we manage to make some headway on this important issue.
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems.
Thanks for your work in this area. Too often confused with hospice care. Palliative care helps with pain management, mental health services, and other issues that CLL patients experience. The discussion should take place early in the diagnosis, and onc's should not consider it as giving up. Often times it provides hope to the patient.
The word immediately makes me think of end stage. Ie the time before death when all treatment is futile and you went to control pain and other symptoms. I’m thinking morphine and Macmillan nurses...
Thanks for your input Adrian. This is exactly the type of image and stigma I'd like to change, for the reasons I described above.
My siblings refused to allow palliative care for my mother because they saw it as end of life. I couldn’t convince them otherwise. Very frustrating! Maybe it needs a different name that is ? More upbeat? That defines the meaning somehow within the name, especially since so many people misunderstand the term? I hope you make some progress internationally!
I'm very sorry to hear that. That may be a good idea, although changing the official medical names of things may be a bit beyond our remit! It's a good idea though. Thanks for sharing.
I think it should be called “symptom control”
yes. I was originally surprised by this myself. I had thought Palliative Care was for allieviating the suffering of those near to death. (excuse my spelling) In reality, it is much more than that and in fact, my husband, who is busy working as we speak, is in receipt of palliative care to help with the symptoms he experiences which are not going to be cured.
In my experience, this distinction only becomes clear when one comes across a condition one can live with, whilst also managing symptoms.
So, while my experience was only working with people who were receiving and of life palliative care, that's all I thought it was, now, I have more experience, so I can understand better.
I have always seen 'palliative' as can for people who need controlled pain management
Great topic to highlight and discuss! Palliative Care is so misunderstood and yet so essential.
Hi. I think it’s about controlling pain and making the patient comfortable rather than looking for cures. I associate it with end of life care but I think you can have it throughout your care? Now I’ll google to see how right I am x
When I was diagnosed with low risk MDS/MPL in June I was given a prognosis of ten years (bit of a shock considering I thought I just had anaemia and the abdominal scan showed all my organs were pretty good) and that there could be no treatment because of the crossover, so all that could be offered would be palliative care, which I understand to be keeping a patient comfortable while the disease takes its toll, and usually the term is linked with end of life.
Hairy cell leukaemia
Worried
W/b over 200,000 And hemoglobin is low nine
1st clinical appointment,what should I ask?