End of Life Care– The Little Things still mean the most

Dying Matters Awareness Week 9-15 May 2016

Death and dying is a morbid topic to most people. It seems people want to talk about it but are afraid to, or aren’t sure how to approach it. Statistics show that over 70% of people in Britain feel if it was easier to talk about death, dying and bereavement their end of life care wishes and preferences would be better met. But still less than 40% have a written will and only 7% have written down their wishes with regards to future care.

When I told friends and family I had applied for a job in the End of Life Care team at UCLPartners, few asked me what I would actually be doing and most asked ‘would that not be really depressing?’. I knew it wouldn’t be depressing. I interviewed for the role having read about the project, and I was just excited to have the opportunity to work in a healthcare organisation that was working to improve the care patients receive. It didn’t put me off that it was End of Life Care – it made me more determined to get the job. Both my parents worked in nursing homes when I was younger, and so spending time around elderly and dying people, I inherently developed a compassion for their care. One of my earliest memories is of an elderly lady with Dementia who my Dad looked after. She had this very large bunny teddy bear which she thought was her baby, she carried it everywhere with her and the staff even gave her food for it at dinner time!

When I interviewed for the role and met the Clinical Lead for the project, Dr Caroline Stirling, I wanted the job even more. Caroline has so much passion it is infectious. I’d met people like this before throughout my engineering career, but the impact they had on me pales in comparison. Here is someone who cares so much about people, someone who wants to talk about the taboo subject of death and dying in a positive way – how can we improve that experience for patients, after all, everyone will inevitably go through it once.

Once I started working with the team I quickly realised there was much more to caring for a dying patient than I had ever imagined. But what stood out almost instantly was that the most important aspects all seemed to relate to the patient and their loved ones wishes and preferences. What are their cultural and spiritual beliefs? Do they wish to die at home, in a hospice or at hospital? How much do they actually want to know and how involved do they want to be in decisions about their care?

Things that seem so simple like staff introducing themselves and speaking to the patient directly (even if they are not fully cognisant), the very basic skills – these are the little things than can sometimes be the most memorable both for the dying person, and for their loved ones left behind.

Being exposed to all this has made me think more about myself and my family, what my wishes are, and theirs, should the inevitable happen. I want my loved ones to be treated with dignity and respect, a dying person is still a person, not to be dismissed.

This year’s Dying Matters Awareness Week is focussed on The Big Conversation and it’s something we should all think about having, so that the little things important to us are respected, even when approaching the end of our lives. As everybody’s wishes are different clinicians need guidance so they can provide truly person centred care.

Some things you can do to record the things that matter to you;

  • Write your will
  • Record your funeral wishes
  • Plan your future care and support
  • Consider registering as an organ donor
  • Tell your loved ones your wishes

 

Michelle Mooney is project manager, End of Life team, UCLPartners. Find out more about their work here. michelle.mooney@uclpartners.com  @michelle_m_7 #uclpeolc

 

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