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.”
With you on that . I have to remind myself that vulnerable is not a failing, it’s not a weakness and it’s not an insult.
xx
We all have our own way of dealing with this, don't we? I am happy that people know my wishes, we have always been quite open about death in our family. I don't see it as giving in. My boyfriend is the opposite, he doesn't like any form of discussion. When my mind is at peace, I can feel my body regain strength.
Xx
Dearflowerlady, I am very lucky that my husband and I talk openly about my situation, I gave him a lasting power of attorney which I couldn’t have done if we hadn’t been able to talk the whole painful thing through, since then I’ve been much calmer and more able to cope with the daily challenges I face. I think I’m probably to stoic but it’s a self protective mechanism I think. After I was misdiagnosed with breast and liver cancer and told I couldn’t have any more treatment for my leukemia I shut down and don’t think I’ve ever really recovered emotionally since.
Hi
I can see how being misdiagnosed and told that there’s no further treatment would rather knock the wind from your sails. We are the same age and I think I recognise something in your attitude that’s similar to mine. If I’ve got to die, then I am jolly well going to make a good job of it. Am I right?
There is nothing wrong with that (but then I would say that, wouldn’t I?) but I’ve recently begun to think that it’s as much living in the future as is being down and depressed about all the things I can no longer do or won’t live to see. I’ve done what I can do such as writing a will, sorting out finances, making contacts with palliative care services, appointing attorneys for health and finance. Now I need to concentrate on today. This one, here and now.
I am talking about myself here but maybe there’s something in it for you too?
Lots of love
xxx
Dear,
I think on most issues we are as one. Every decision I’ve made has been designed to enable me to live my best life given the circumstances and also to reduce the stress on my beloved husband whose input sometimes gets forgotten by the medical profession. There’s an expression, I would rather die standing up than live on my knees, and for me I translate that as not allowing the whole painful experience rob me of the ability to get joy out of life when it’s available. Occasionally I do get overwhelmed but I somehow manage to pull back from the edge of despair and once again try to seize the day.
I can tell that I feel worse than 3 weeks ago. So when I saw doctor today I wanted to ask 'how long' but I know she cant be clairvoyant. So I asked in terms of whether I am stable, going downhill or quickly downhill.
Tessa
Dear, tessa, I’m sorry to hear you feel your condition is worsening, may I ask what was the answer to your question if you feel able to share it.
Hi
I am sorry you feel you’re going downhill too. I recognise what you’re talking about as I’ve felt the same over the last few months. Do you feel like sharing what your consultant said? It’s ok if you don’t. I am ok to listen if you do
wishing you joy and peace this Christmas Eve
xxx
Too complicated to go into everything, but doctor is going to tweak my transfusion routine to try and keep the blood levels more stable and see what happens in the New Year.
Also had a chat with a nurse specialist that has known me for over two years so knows my mindset. She said I mustn't feel I have to continue with treatment that is exhausting me just to please people that can't cope with the idea of me not recovering.
Several people I have tried to talk with honestly have said it's just winter depression and I will feel better in the spring. There may be some of that, but I know it isn't that simple. Fortunately a few close friends do understand the issues.
When I have had normal depression or SAD in the past, I knew I could cheer myself up in little bits by certain activities or trips out. Now I don't feel I have the strength to do them. I try to comfort myself with the memory of special days, but I end up crying because I know they can't be repeated.
Tessa
Hi Tessa
It sounds like your consultant has a plan and that your nurse knows you well enough to have an honest conversation. That’s a blessing in itself. It’s your decision about whether to continue with this treatment, but goodness what a hard decision to make. I talk about saying “no” to more chemo but I can’t imagine being brave enough to carry that through. Or maybe I can’t imagine not doing it would feel better than doing it.
You do sound very low, though. I get down too and I know what you mean about knowing how to cheer myself up. Sometimes it’s just a matter of knowing that it will pass. I knew I was in trouble with depression when I couldn’t see that there might be light at the end of the tunnel. It happened to me only once and it was horrible. So when you say you don’t have the strength to do your cheering things I can get a sense of how low you are feeling.
I don’t have any advice or words of wisdom. All I can do is listen and let you know that I’ve heard you.
Much love xxx
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