I call it ‘the grim reaper talk’. By this slightly tongue in cheek phrase I refer to the vital timely episode of communication I have with a patient’s family when we as the multidisciplinary team feel someone has entered the final stages of their life in terms of hours or days. I will sit down with the relatives somewhere quiet away from the patient’s bedside and after exploring the baseline understanding of the current clinical situation and explaining all the treatments we have tried without success, will gently then introduce the idea that we feel their loved one is dying and that perhaps our interventions are actually causing unnecessary suffering without having a beneficial effect. Often I find people completely agree with our observations and sometimes there is an audible sigh of relief in the room. Eyes well up and tears usually start to flow, but I find that the most frequent verbalised response is “she wouldn’t have wanted all this.”
In an ideal world I will have already built some form of relationship with my patient’s relatives and have explained the care journey on a couple of occasions before we actually get to ‘the grim reaper talk’ but unfortunately the way that the modern NHS works with lack of continuity, more often than not this will be the first time I have ever had a conversation with these people. Showing that you truly care and promoting the comfort and dignity of that individual patient is of paramount importance. I try not to erase all hope during these difficult conversations and always try to communicate the uncertainties we face in these situations. The future is impossible to predict and no-one has an accurately functioning crystal ball. Occasionally patients improve and rally when active treatment is discontinued and everyone working in specialties involving palliative care will have witnessed this.
I do not want to forget the patient in all this. Perhaps we spend proportionately more of our time speaking to relatives in Elderly Medicine due to confusion or other communication barriers but it is absolutely imperative that the patient remains central to all decision making and where possible they should always take an active role. The pragmatism and stoicism that older people exhibit has always been and remains an inspiration to me on a daily basis and has helped me come to terms with my own personal situation immensely.
As part of my non-clinical work I am part of the End of Life Strategy group at my hospital. One piece of work I have been involved with recently for this group is an analysis of complaints made about end of life care to see what we can learn from when things do go wrong. The vast majority, if not all complaints made in this setting are centred on communication failures. Perhaps a ‘grim reaper talk’ has not occurred and because of this a death has come seemingly out of the blue even though a patient has been noticeably deteriorating whilst in hospital from an already frail baseline. As senior doctors working in specialties such as Elderly Medicine I believe we all have a duty to help to train our junior doctors not only in the skills and knowledge necessary to work safely in acute medicine but also in the communication skills necessary to hold these conversations effectively; much of this comes from observation and supervision, which is a challenge in itself in the time-deprived and staff poor NHS environment.
The problem is that achieving excellent communication with both patients and their relatives in this setting takes a great deal of time, effort, experience and skill. The pressurised working environment that we all face every day on NHS wards is not really conducive to achieving this. However, we must remember there is only one opportunity to get communication right at the end of life and people will remember those conversations we have with them forever more. I believe the quality of this communication also has some impact on how easy the grieving process will be. We as doctors and nurses need to remember this and try our hardest to show as much empathy as we possibly can always thinking about how we would feel if it was our loved one that was facing the very final stages of their life.
drkategranger 
Well said Kate. I’ve been there with the doctors to support the family during that chat; been part of the family listening to that chat. I’ve also been the person who’s held the hand of a relative and just let them talk, assuring everything they feel is ok and normal. You guys do a great job. That you do this in the position you’re in is even more amazing.
You offer a number of important messages there Kate – in our own organisation we are also working to learn from complaints and poor practice at the end of life. Sharing the learning and closing the loop on actions is crucial. I wonder about training in communications skills for all of the MDT. Yes communication and ‘difficult conversations’ training is important and must begin at the start of careers, but I also place great value on clinical leadership, role models and mentors in practice who champion and demonstrate good communication on a daily basis. Of course the opposite is true and poor role models leave a lasting impression within a team and can leave a lifelong burden for affected families.
Dear Dr. Kate I am a great admirer of you & your books and I hope that you will be able to write another one.I am 81 years of age and have predictably survived 10 years of breast cancer . I have told my doctor that I dont want any further interventions . However I am concerned about the poor palliative care treatment that seems to be on offer, altho’ I will do my best to die at home
I have a a relative who had hallucinations from her morphine treatment and the day before she died the nurses offered her 3 morphine pills when she could no longer swallow.I also dont want to suffer from constipation and be doubly incontinent. This is a comparatively minor matter but it is important to me. Is there no other better treatments than morphine? In this respect I wonder if you listened to Wilf Self who in a series A POINT OF VIEW
called Terminal Thoughts Radio 4 Friday 11 Jan 8.50 pm discusses this matter. Its only 10 minutes and you can get it on Iplayer. Its worth hearing and he puts his case very well.(I was impressed altho’ I find his books unreadable).
Dear Dr Kate
I have just read your wonderful Guardian article on the LCP – and followed the link to your blog. Your observations on the “grim reaper” talk are spot on! My mother died on New Year’s Eve, after being placed on the Liverpool Care Pathway, and yes, we were relieved when her GP (of 14 years) suggested the LCP and, yes, we did say “she wouldn’t have wanted all this”.
Our experience of the LCP was incredibly positive. My mother had been in hospital but she came home on Christmas Eve – no one said she was coming home to die, and she did seem ok in hospital, but the doctors must have known. However, looking back, I’m pleased they didn’t say anything (I thought I would be annoyed and upset but, no!) After a couple of reasonable days, she stopped eating, drinking or taking her meds. Because the Pathway was initiated, her GP was able to write a script for various controlled drugs, including morphine, and these were kept in the fridge, ready for use if and when needed (they were not). The District Nurses came in to see her 4 times a day and we were told to ring them at any time. The support was wonderful.
We did wonder if she was put on the Pathway too soon, could we do anything different, etc., etc. In fact, we did offer her water and she said she wanted some but she didn’t/couldn’t swallow it.
Then we read the “checklist” for the Pathway with the 5 (I think) indicators that the patient could be in the final stages of their life. If I hadn’t known better, I’d have said it had been written about my mother. It described her exactly. I admit when we heard the phrase LCP we did think the worst. But in my mother’s case, the help and support could not have been better.
My mother died quietly and calmly, without any pain or distress – or drugs. I know that every patient and every relative and every situation is different. But the LCP helped not only my mother but also my sister and I. And for that, we are very grateful.
Dear Christine, thank you so mcuh for sharing such a personal story of how the LCP can really help in achieving good quality end of life care. I am so glad your family felt supported at such a difficult time and that your mother had a peaceful death a home surrounded by her loved ones. Best wishes, K