Time to get end of life care right?

Kate Granger is an Elderly Medicine Registrar at Pinderfields Hospital in Yorkshire. She tweets at @GrangerKate and blogs at drkategranger.wordpress.com

As Geriatricians I strongly feel one of our most important roles is providing Palliative Care in the acute hospital and within other settings such as nursing homes. We only have one opportunity to get this right and getting it wrong can cause lasting, irreparable damage to those left behind.

As a terminally ill cancer patient, diagnosed at the age of 29 with a rare and aggressive sarcoma, these aspects of care have been brought into even sharper focus. Death is not an abstract concept for me; it is a reality in my foreseeable future. For the moment, though, I remain well enough to work part-time as a Specialist Registrar in Geriatrics.

How has serious illness changed my practice? I am far more interested in my patients and their lives now. I was once referred to by a Consultant Oncologist when I was undergoing palliative chemotherapy as the ‘DSRCT’ girl. But there is so much more to me than my disease. I’m a wife, daughter, sister, aunty, doctor, writer, flautist, baker, fundraiser and swimmer. I always start a ‘grim reaper’ talk these days by asking a family to tell me about their loved one and their life, their employment, their hobbies and what is important to them. I find it more and more crucial for me as a clinician to be able to see that person within their wider social context and not just another body in a hospital bed. I am sure the reason for this is my own illness and how I would like to be looked after myself.

The critical importance of how we communicate with our patients and their relatives has definitely been highlighted during my journey with cancer. I have received a very mixed quality of communication as a patient and these experiences spur me on to try harder and improve with this vital aspect of care. Being open, honest, pragmatic and transparent about end of life issues whilst always putting the patient at the centre and communicating uncertainty can be difficult, even uncomfortable at times, but I find also hugely rewarding. The significance of the small behaviours from clinicians, what I refer to as ‘the little things’, cannot be emphasised enough when you are in a distressed and vulnerable state as a patient. This non-verbal communication, holding someone’s hand for example, really makes a huge difference. I pay particular attention to my own body language now and always try to be on the same physical level as a patient, often hold hands or just sit quietly listening, not saying anything at all.

One aspect of care that I think we could develop as a specialty, in order to improve the experience patients and their families have at the end of life, is Advance Care Planning. My own planning has been driven by me, not my doctors, but it is something I try to think about at work more now, because of my history. The majority of patients and their families will need help and guidance through this decision making process and even starting the conversation can be extremely difficult. I find this booklet from Dying Matters particularly useful in this situation:

All this takes a great deal of time and that is something in acute hospitals we are very short of and appears to be becoming scarcer day by day. I’m absolutely sure there is no easy answer to all this. In my opinion it is near impossible to protocolise this kind of care because everyone is an individual with a different spectrum of disease, different care needs and different existing supports. I think, though, that remembering my mantra of providing the care that you would be happy for your relatives, or yourself, to receive is always a good starting point.

3 thoughts on “Time to get end of life care right?

  1. My Father had horrendously bad end of life care, as a blind gentleman of 84 with terminal cancer. Suffered unacceptably because his severe sight impairment wasn’t taken account of during his 5 months in hospital. Then sent to an appalling care home for last 5 days of life, and Care Inspectorate upheld 9 complaints from his stay there. Unacceptable, unforgivable.

  2. Kate – Thank you for writing this article. It is a subject that I also feel very strongly about. I cared for my daughter Emma after she was diagnosed with a small cell soft tissue sarcoma and I was aware that the issues of end of life care was very hard for the staff to address. I am a retired nurse and now work as a volunteer carer Ambassador for Carers UK. I am trying to get the end of life care planning issues onto the national and local carer service agendas. Many carers have not been able to have an open discussion about the future of the person they are caring for or indeed their own preferred choices.
    Take care.

    Pat Vinycomb
    Carer Ambassador Carers UK

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