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.”
Hello Tessa,
I wrote a long post but it has disappeared! I am sorry you are feeling so low and wish to echo Daloni's words that you have friends here who understand how you are feeling and will listen to you anytime. I have experienced these feelings and feel despair and sadness which I try to disguise by being overly cheerful!! I do not ask how long I have left as I am not brave enough. I have discretely made plans for the future what ever it is as I cannot bear the thought of my much loved husband having to mange everything on his own. I veer between feeling tearful and low at this thought to wild optimism of future cures, going abroad for new therapy or outliving my husband so he does not experience distress.I am so glad I have this space to describe these very private emotions, I try to be supportive and cheerful when supporting others to the point that my friends will jokingly (maybe not!) call me Pollyanna! but in this forum I feel I can trust people to express what I really feel and think and I know that I will not be judged and will be understood even if people don't agree with me When you have reached the stage where you feel you don't have the energy to do cheerful things you may wish to consider seeing your GP for medication, unless you are already taking something for depression. I am on anti-depressants and it has made a difference to lifting my low mood and controlling my anxiety. You might also might consider seeing a psychologist who will help you manage your emotions, if you are near a Maggie's centre they offer this support or your GP could refer you to one. I imagine you are probably feeling too overwhelmed to do this just now but your Macmillan nurse may be able to help you. This is a sad time for you just now, not helped by Christmas expectations to be happy and the dark weather. You may not feel it just now usually this horrible time does pass and the days will get lighter as will your low mood. Be kind to your self, relax and don't feel you have to do things you don't want to do because of others expectations. Try an go out for a short walk in a pleasant place, put your phone off if you want. Stay in bed for the day, but not too often! Remember we are all behind you here and will listen and understand as people here including you have done for me. Please post anytime and keep in touch to let us know how you are.
With lots of love and big hugs
Pat xx
Dear tessa, I second everything said by your other friends, Christmas is not a good time for making decisions about treatment as it has a tendency to make some of us reflect too much on the past when things were different. I too have leukemia so understand where your coming from in regards to what might happen in the future. My husband never puts pressure on me to continue with treatment, and because I have a palliative care doctor who I see every 2 months we reassess how I’m feeling about things and he passes that on to my hemotology doctor. Sometimes I want to stop and then I have a good day and decide to push on, if I start to have a consistent desire to stop then maybe that’s an indicator, but while Im feeling conflicted its probably not the right time.
Over the holidays I have read many posts from carers supporting family members with terminal cancers, who seem to be in desperate situations struggling to meet the needs of their loved ones, and the one theme that keeps recurring is the fear of being admitted into the hospice for respite care. As someone who has connected with my local hospice as an insurance policy in case my husband can’t look after me at the end I find this perplexing, I would really like to understand what is at the root of this resistance, is it because people don’t really understand what actually goes on in the hospice or is it tied up with deep denial of someone’s prognosis. As someone who is trying to do her little bit to break down barriers in relation to palliative and end of life care I would really welcome anyone’s thoughts on this subject what ever your point of view. I find contact with my hospice and palliative care doctor so comforting I wouldn’t want anyone to miss out on support through a misapprehension.
Hi Johnty I do understand why people are scared to place their relatives in to the hospice care.Can you trust completely strange people when there is so much abuse going around in the care homes or hospitals?
My view is sometimes I am fed up with the treatment but I carry on and I will do everything to prolong my life and hoping I will be ok.Even the doctors don't know everything.Its nothing wrong with denial for me it helps me to carry on with treatment.My husband said he would never put me in a care home and I would refuse to go anywayt.If the end comes I don't want strange people wiping me or feeding me or not feeding me or whatever.
I think hospice is connected with death and bed ridden people. I have worked in a care and I had to report few people for mistreating residents so for me no thank you.The nurse she referred me to a hospice and when the nurse from hoapice came first thing she asked me for last will.Like I am already finished.You know what I mean?I got so upset I am not communicate with them.I shouldn't be referred while I am still having treatment and it's working
This is only my view.
Dear, thank you for your honest opinion, I think we need to get these fears out in the open air and the medical profession needs to address the concerns you raise. We are all the sum total of our lived experiences both good and bad, for me it’s a fear of hospitals as that’s where all my traumatic experiences have taken place, I think that’s why I find my hospice experiences so comforting as it’s so different to a hospital. I also agree that denial is a legitimate way of dealing with cancer if it works for you and helps to make having life extending treatments easier to cope with. I don’t judge I just want to understand everyone’s point of view so thank you for your input.
I cant wait to go into my hospice!! I live alone and have in the past experienced a succession of different carers breeze in for half an hour then I'm alone again. I want to be fed well and have some company. I've spent all my life having to look after myself or other people. I feel its time for someone to care for me. Ok they will be strangers but thats the situation I am in.
My local hospice has excellent reputation so I have no concerns about abuse. All the rooms face the garden which is very important to me.
Medically I am doing ok and coping with my basic needs. But I can no longer do things I enjoy or feel define who I am. My identity is dissolving and I am just a physical shell they are trying to keep alive. To what purpose?
I couldnt bear to go into hospital again. I cant eat their food. I could end up with just a view of a wall. I'd rather die at home alone.
I see or hear of other people battling with much worse physical problems which makes me feel a bit of a wimp. But I have been a strong person all my life and know I have no reserves left. I was stuck in hospital or at home nearly 18 months during my first spell of leukaemia and kept going through those dark times because I felt there was light at the end of the tunnel.
Im sorry all my posts recently have been so dark. There are bright moments but not enough to change my basic mindset.
Tessa
Hi
It seems people have very different experiences of hospice care. My mother died in a hospice and received better care than we could have possibly given at home. The nurses were caring and tender. She was not in pain. It was a good death. She had nursed her own mother through lung cancer and was adamant that she didn’t want that for her daughters.
My own experience of the hospice has been excellent. Yesterday I was in appalling pain. I was able to ring the hospice and get straight through to the clinical nurse specialists. They came up with a plan and liaised with my oncologist (I was at the trials unit) and within four hours I had the meds in my hand. They will inform the GP.
I can see that hospice care varies and I feel very lucky to be living near such a good one. My husband is no longer with me and I live with my 15-year-old daughter. I think there are things I’d rather she didn’t see or experience so, like my own mother, I wish to plan for my death to be in the hospice.
Thanks to everyone who has joined this very interesting discussion. It’s eye opening
xx
Dear and it’s reassuring to hear your positive points of view of the hospice movement. It seems that people who have direct experiences of what the hospice offers differs from those where only a perception exists. I got a flavour earlier this year of what it would be like if I needed my husband to provide me with personal care after my leukemia relapsed and I broke my arm and spent 3 weeks in hospital, and I didn’t like it one little bit. I want to spend my last couple of weeks with him being my husband and not my carer so if that means going to the hospice so be it ! He’s done quite enough for me over the last 18 months, I couldn’t have asked for anymore and I don’t want to leave him with traumatic memories of a bad death when it could be avoided. Having the hospice there as my safety net allows me to live my day to day relatively stress free. What I would say to anyone reading this thread is there’s no harm in getting yourself on the radar of palliative services or the hospice, your not committing yourself to anything and you will not be compelled to do anything against your will. I have recently got a copy of being mortal by atul gawande which Im reading a chapter at a time and so far it’s reinforcing my beliefs that I’m doing the right things in my own personal circumstances.
I think planning for end of life is like planning for birth. You can’t know how things will go or what will matter to you so it’s best to keep your options wide open. I’m certainly open to connecting with a hospice when the time comes. I’ve had excellent care in hospital recently and if that seems the best place for me I wouldn’t rule it out.
Dear I agree, we try to make plans for every other aspect of our lives, so it pays to have a rough idea at least of what your objectives are in terms of end of life care and explore what is best for you given the demands your individual cancer places on the body.if things don’t pan out as you expect then it’s good to have all options on the table, ie home, hospice or hospital, that’s why my palliative care doctor is such an asset to me as he’s my advocate in the hospital and has all the connections I need.
Whatever cancer throws your way, we’re right there with you.
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