Jan Cooper, Regional Liaison Adviser at the GMC, started her career as a palliative care nurse. She reflects on our focus on end of life care throughout 2016 and asks some of the people we’ve worked with for their thoughts on this important and emotive area of care.
The end of life care campaign has covered many important elements ranging from clinical issues such as DNACPR decisions and clinically assisted nutrition and hydration, to aspects of facilitating choice and control for patients who are facing the end of life such as advance care planning. However, one theme has been constant in all elements of the campaign – effective communication.
As Cicely Sunders, the founder of the modern hospice movement wrote, “Suffering is only intolerable when nobody cares”. But the art of communicating a caring approach presents many challenges for doctors in current health care practice. These include concerns that death is often seen as a failure in a health care system focussed on diagnosis, treatment and cure, approaching difficult conversations, and managing their own personal emotions/distress.
As we come to the end of 2016, we asked some of those we have worked with to reflect on their professional experiences of end of life care. Strikingly, all came back to the importance of communication.
“As a medical student I have spent the past six years learning arduously how to cure people to the best of my ability. Now, as I fast approach the end of my undergraduate training, I have come to realise that there is a far more difficult task in recognising and supporting patients where this is no longer the aim. I approached end of life care with a degree of trepidation. My biggest fear was upsetting a patient or their relative by saying the wrong thing, but this was closely followed by an anxiety over how I would manage my own emotions.
My end of life care teaching was rooted solidly in encountering dying patients and having discussions with their relatives and allied professionals who do incredible work to support patients. This, together with the latest GMC communication videos, provided me with vital insight and also reassured me that feeling emotional after a patient encounter was in fact a positive marker of making a connection with patients that would allow me to provide the best care for them. My teaching in end of life care has been essential in my progression to becoming a caring and compassionate doctor.”
Lucas Brammar, final year medical student, Bristol Medical School
Lucas highlights the positive impact of end of life care education in allaying fears and improving confidence, demonstrating the importance of embedding high quality training in the early stages of a medical career. To remain effective, this kind of training needs to be sustained throughout a doctor’s career. In 2016 we ran a training programme for both GPs and hospital doctors with the Gold Standards Framework Centre for End of Life Care. Consultant Renal Physician Andrew McClean completed the programme and we asked him about his experiences of end of life care training throughout his career.
“As medical students and junior doctors, most of our education is focused on preserving life and improving quality of life. Most of us find it much more difficult to talk to our patients and their relatives about death. However in my experience as a physician dealing largely with chronic illness, a bad end of life experience is rarely caused by problems with treatments, and far more often by poor communication.
I received some very good communications skills training at medical school, but attending an advanced communication skills course around a year ago has really changed my practice – perhaps most of all with patients who are approaching the end of their lives. By trying to improve my active listening, I’ve been surprised by how willing many of my patients have been to discuss the issues health professionals find uncomfortable, including how we might provide them with a comfortable and dignified death. For example, it has led to much more open discussions about the benefits and drawbacks of treatment options such as not using dialysis treatment in advanced kidney disease, and allowed us to focus on quality of life rather than preservation of life where that was more important to the person.
This year I also attended the end of life care training programme delivered jointly by the General Medical Council and the Gold Standards Framework Centre for End of Life Care. The main thing I took from this course which has changed my practice is the principle of advance care planning. It’s not always possible to work on formal advance care plans with patients, but I have found that simply by raising such issues at an earlier stage, many patients are engaging in joint decision making which will help the patient, relatives and team when we reach those more difficult days to come.”
Dr Andrew McClean, Consultant Renal Physician
Lucas and Andrew both reflect on the apprehensions often felt when approaching difficult conversations about end of life care. GP Catherine Millington-Sanders has co-developed a training programme that aims to help health professionals to overcome this. We asked for her reflections on end of life conversations.
“Difficult Conversations has been set up to support medical professionals to have effective, compassionate conversations with patients and their families at the times when it really counts.
Although “tick-box” tools for professionals have surged in a quest to simplify the journey through serious illness and end of life care, we must never forget the nuanced art of our science. Complaints are on the increase, many of which are related to communication. More so than ever, supportive and meaningful communication with patients is paramount and indeed as vital an ingredient as the medical treatments we provide.
However, telling a patient and their family that they’re seriously ill or even dying is never easy, indeed many professionals report trying to avoid such conversations as they are just too difficult and upsetting.
Through evidence-based, peer-reviewed training, Difficult Conversations is addressing this, and has already trained over 1,500 health professionals giving them the ability to:
- develop robust care planning skills including awareness of inequalities
- improve their communication skills
- understand legal documentation, and good practice guidance
- develop knowledge and confidence in this arena
- and access education aids in our resource pack, e.g. RCGP /Marie Curie Partnership EOLC toolkit
This summer Difficult Conversations was delighted to have been endorsed by the GMC. We share common goals to enable excellence – both for continuous professional development and for compassionate patient care. We’re looking forward to our future collaboration with partners to further increase our reach and support more doctors.”
Catherine Millington-Sanders, GP and co-developer of Difficult Conversations
Catherine refers to the nuanced art of medical practice and how the focus on emotional elements is just as important as the physical aspects of care. Developing the confidence to be open to end of life care discussions is an important step in delivering quality care that means a lot to patients, carers and doctors.
Dying Matters and the National Council for Palliative Care (NCPC) aim to encourage more people to have open conversations about end of life care. Claire Henry is Chief Executive of the NCPC, which set up the Dying Matters Coalition. Claire shares her reflections on the importance of working together to champion better end of life care.
“This summer saw the Government unveil its National Commitment on End of Life Care, and everybody – doctors, nurses, managers, commissioners, care workers and above all patients – needs to understand what it means for them. This, and the associated work for the Ambitions for Palliative and End of Life Care, is only possible with large coalitions of partners, and we have always been pleased to work with the GMC on this vital work.
Together with the GMC, this year we developed two short films bringing together perspectives of good practice communication in end of life care: these are brief but have a great impact, and I hope we can see more work like that in the future. The GMC also supported the annual Dying Matters debate, where Niall Dickson, their former Chief Executive stressed the importance of good education and training throughout a doctors career, and ensured the audience was engaged and challenged.”
For Dying Matters week 2017 we want to continue to challenge people and are throwing down the question “What can you do?” The answer is “a lot,” for ourselves, our families, our friends and our communities. I would encourage everyone to ask themselves that question.”
Claire Henry, Chief Executive, National Council for Palliative Care
As we look back at what we have delivered in 2016, including our supporting role in developing an advance care planning training resource with RCGP Wales, and partnering with NHS Education for Scotland on their Supporting Scottish Grief and Bereavement Care project, it is important to look ahead at what more we can do. We will be continuing our campaign into 2017, sharing resources and guidance on issues such as spiritual care and inequalities. We look forward to working with existing and new partners to champion good education and training in this important area of practice.
Dr Rebecca Gemmell, F2 Doctor, discusses food and drink in end of life care.
Dr Katie Smith, ST2 in Public Health, explains how end of life care requires care, compassion and simple humanity.