End of life planning tied to longer survival with terminal illness

FormerMember
FormerMember
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End of life planning tied to longer survival with terminal illness

Terminally-ill patients who discussed their options for end-of-life care tended to survive longer than those who had not, a small clinical trial in Denmark found.

The authors originally set out to learn if advance care planning influenced whether terminally-ill patients died at home or in the hospital. But they also noticed a marked difference in how many trial participants lived for a year or more and decided to take a closer look.

“When we analyzed the primary data, we noticed a difference in survival, too,” said study author Mette Asbjoern Neergaard, an associate professor at the palliative care unit, department of oncology at Aarhus University Hospital in Denmark.

“If one advanced care planning conversation can improve survival, that’s really important to look into,” she told Reuters Health over the phone.

In advance care planning, patients are encouraged to talk about the kind of care they want, their wishes for resuscitation or treatment and where they prefer to die.

For their original study, Neergaard and colleagues enrolled 205 terminally-ill patients in Denmark starting in November 2013. About half had cancer and the others had heart and lung conditions.

The researchers randomly allocated 102 patients to advance care planning discussions about their end-of-life preferences, and 103 to a comparison group that did not receive this intervention. All the patients were followed until death or November 2016, the end of the trial.

When the researchers looked at survival rates, they found that, overall, 73% of patients who had discussed advance care planning were alive a year after enrollment, compared with 57% of those who did not have these discussions.

Drilling down further, they saw that among cancer patients, the one-year survival rate was 56% with advanced care planning and 47% without, which is too small a difference to rule out the possibility it was due to chance.

But among patients with heart and lung conditions, 90% of patients who had advance care planning discussions were alive at the one-year mark compared with 67% of those who didn’t get the intervention.

Neergaard said the authors don’t know exactly how survival improved.

“Having the conversation about end-of-life preferences and thoughts may be helping patients make a commitment to life, take better care of themselves and let their families take better care of them too,” she said.

Discussing care options also opens pathways to symptom management and palliative care, said Patricia Davidson, dean and professor at Johns Hopkins School of Nursing in Baltimore, Maryland, who wasn’t involved in the study.

“We cannot underestimate the importance of patients coming to some level of personal peace about their condition. One of the things not often talked about is the role of existential distress,” Davidson told Reuters Health in a phone interview.

“Studies have shown palliative care is not as integrated into the treatment of patients with non-cancer diseases,” Neergaard said. “When you have cancer, you immediately know you may die of the disease. But when you get chronic obstructive pulmonary disease (COPD), lung fibrosis or heart disease, you think this could be cured.”

Davidson, whose key areas of interest is palliative care for heart and lung conditions, said the current study presents compelling evidence for the role of advance care planning, especially for non-cancer patients, with whom prognosis is not as commonly discussed.

Neergaard said more attention is being paid to non-cancer diseases.

“Patients often feel it should be the healthcare professional who starts the conversation about end-of-life-care. This means care providers must give the patient a chance to have the conversation.”

  • FormerMember
    FormerMember

    Hi I am sorry but I don't really get it how this study improves survival.Its not medication isn it?

    Personally i am not willing to sign any forms for DNAR and definitely don't want to discuss in advance my future.The only thing keeps me fighting that I believe I will be still ok and beat the statistics.If I don't keep positive that's it it's over.Whats the point of the treatment then.Who knows what's bring the future?If they stop treatment here I will travel somewhere else for treatment but I am not willing to give up.

    Anyway it's only my opinion.

  • FormerMember
    FormerMember in reply to FormerMember

    Dear of course you are fully entitled to your opinion which I respect 100% however this part of the forum is a safe space to discuss issues around end of life care. I have a completely different philosophy to you and found the article very interesting and wanted to share it with other members of the end of life group. Perhaps you will be more comfortable in the incurables section of the forum as I wouldn’t like to think of you becoming upset by anything you might read here. I wish you well with whatever treatment you are currently having. As for me I am living a happy life and am at peace.

  • I think this is interesting. Anything that may help survival and quality of life is worth looking at. 

    Thanks

    Flowerlady x
  • FormerMember
    FormerMember in reply to flowerlady

    Dear

    The reason the article caught my attention was  because it seemed to mirror my own real life experience. I put in place an advanced care plan etc  after a conversation with a palliative care nurse and since then I have felt much more at peace with things and have outlived my prognosis quite considerably. I’m much more relaxed now and focusing on living a good life rather than worrying about things which I have no direct control over. Whether those two things are connected it’s impossible to state definitively but if you think the mind has a part to play in overall survival then it’s definitely worth looking in to especially if it improves quality of life overall. I hope you are doing ok and thank you for your comments.

  • FormerMember
    FormerMember in reply to FormerMember

    I have come to accept that twice weekly outpatients visits are keeping me alive when initially it felt too stressful to ask of myself. My consultant feels I've got the right balance between medication that dampens my leukaemia without making me feel too sick.

    How long that can last I dont know. I guess at some point the leuks will get stronger and I wont be able to cope with the consequences. In the meantime I like to keep busy with some projects I want to finish.

  • FormerMember
    FormerMember in reply to FormerMember

    Dear I think what the study might be really be saying is that when you focus on living your best life it reduces the emotional strain you are under and in some unmeasurable way this benefits the body physically. So the fact you have interests that you are still pursuing can only benefit you, I personally try to focus on my day to day and leave the rest for my doctor to concentrate on. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi 

    I think this is very interesting and I’m with you in my approach of accepting my life is time limited and living my best life. This includes planning for how I die and what I leave behind. So the notion that in doing so I might be prolonging my survival makes me smile. 

    However, I know it’s not an approach that suits everyone and I can see your approach works for you . And I think that rather highlights the issue of health professionals raising this topic with patients. How are they supposed to know what approach suits which of us? 

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear, I agree health professionals are between a rock and a hard place, if they don’t raise the subject they may be depriving patients of information that could be helpful to them and on the other hand there is the risk of upsetting someone who is emotionally vulnerable. As with all things it’s a matter of good communication and learning how to back off when the patient reacts badly to the topic even been broached. For me my individual agency to decide on these issues needs to be an informed decision so I want to know all my options however upsetting it might be to hear at the time. I hope everything goes well when you start on your trial, my cancer is so rare there’s not enough of us to have a trial here in the uk, although I believe there has been a small one somewhere else in the world, which will hopefully benefit people in my position in the future. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    Thanks for your best wishes on the trial. I have also struggled to get on to trials that might help me as I have a rare cancer. I have uterine serous carcinoma, which is diagnosed in about 900 women a year. There are now thought to be four sub types with different molecular characteristics that in turn influence what kind of treatment might work. I have none of these. I have a brca defect, which more often causes breast and ovarian cancer. Possibly 2% of women with USC carry a brca defect. So the trials for USC (such as they are) are not best suited to helping me; meanwhile I’m excluded from trials for brca defect carriers as my cancer is in the “wrong” place. My docs have concentrated on picking broad trials looking at solid tumours that are testing drugs that work in ways that might be effective for the molecular make up of my cancer. Am I making sense? I think the future hope is that we won’t look at the cancer site in future but at its molecular characteristics. 

    Back to the matter in hand. I see we agree but can I pick up one thing? I think everyone facing a life limiting diagnosis is vulnerable. That has to be a given, surely? It’s just some of us choose to confront it head on, others choose a different approach. 

    Xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear you are right about us all being vulnerable, I think I need to give my self permission to be vulnerable as I’m so used to trying to keep it all together that I’ve started to think I’m not worthy of any sympathy due to some of the treatment I have been on the receiving end of. It’s a bad habit I need to break and going to the hospice has enabled me to drop my guard somewhat.