Their death: their story

407953159_d8e8e41ef5_oKatie Wells is a Senior Staff Nurse who has worked with older people for 20 years, and couldn’t think of a more satisfying specialty. Here she explains her work to highlight the benefits of Advance Care Planning, and how the death of her Nan made her want to change the role of ward-based nurses to help patients plan for the future.

With so many older people in their last years of life being admitted into acute hospitals, contact with hospital staff gives us a golden opportunity to develop good relationships with both patients and families. These relationships can allow us to make the time to initiate structured conversations surrounding the care and support patients wish to receive at their End of Life.

By doing so, more information, choice and control is given to the patient. This empowerment can often mean they will be less likely to be admitted to hospital acutely and unplanned at the end of life (consistently peoples least preferred place of death).  Advanced Planning and Refusal of Treatment also means clinical staff have fewer “best interest” treatment decisions to make, or can at least understand what is really in the “best interest” of their patient.

For several years I was a carer for my Nan, who suffered with Dementia towards the end of her life.  Although I had worked as a professional carer since the age of 18, this experience became the drive for me to want to change the experience of future patients spending their final hours of life in a place where they may not have wanted to be.

In my Nan’s case, support was lacking at a time when I needed it, choices were not explained before it was too late and I ended up being the person making several big decisions about the life of somebody I loved.  If only I knew then what I know now, my already difficult experience could have been so much easier and her care better planned.

Now as a Senior Staff Nurse on a ward where most of the patients are over 80, with many living with Dementia or Frailty, I am beginning to change my way of working and approach to the care that I provide, and me; supporting a dignified and preferred death for a patient has equal bearing to the objective of “saving lives and making a difference”.

As a nurse, to repeatedly hear the words “mum wouldn’t have wanted this, or she wouldn’t have wanted to die in hospital” I cannot help but think of my Nan and always ask myself “When does a person’s death becomes less important than their life?” The answer is; “It doesn’t.”

Small scale quality improvement projects are always welcomed at the hospital where I work, to benefit future care given by staff on other wards.  Therefore I began working with patients and families on my ward to advocate Advanced Care Planning (ACP) and Refusal of Treatment Plans.  Through talking to a palliative nurse and doing my own research, I began using the trust ACP template to broaden patients’ understanding of their rights to decline active treatment or avoid hospital admission, opting for a comfort approach when they felt the time was right.

Initially, I was concerned how these conversations would be received by patients and families, but now I realise that a good patient/nurse relationship is the basic tool needed to gain a grasp on initial thoughts regarding the future, and once explained in a frank yet compassionate manner, patients and families are then able to understand that it is not NHS withdrawing care, but instead it is the patient being to say “enough is enough”  The plans are all tailor made to a patients wants and needs and I am yet to see the same plan or refusal twice.  Instead I see the anxiety and fear of death being reduced, leaving a person’s End of Life to be dignified, pain free and as close to their wishes as possible, once on board families and loved ones are often grateful that tough decisions are taken away from them.

One year on and I have completed around 50 plans and refusals.  Yes some of them have been completed in my own time, and yes that is my own choice as I am more than aware that as for any nurse “time” is always against us on shift, but when feedback has been so positive, and family members have even contacted me on the ward to offer thanks where their loved one has passed away at home as set out in their plans, I can’t help but think it is such a worthwhile task, that just needs more focus and recognition.

I don’t nurse to hear the words “thank you”, but to be in the thoughts of somebody, when their loved one has died, clarifies that Advanced Planning does make a difference.

Having shown that it is possible for one busy nurse alongside her usual clinical roles to initiative advance care plans, where do I want to go next?

Firstly, I want to keep on helping more patients to complete them, and hopefully enable and train other nurses on my ward and others across our busy elderly care unit to adopt my approach.  Secondly, I plan to collect findings more systematically on the impact the care plans are making, how people find the process and use my experience to improve the documentation.

We can only work with what we see in front of us, yet a simple piece of paper, completed at an earlier date can really help us to help our patients, and allow for them to receive the care in death that they wished to receive.

So lets all start having conversations early, lets not wait until a patient is approaching end of life, lets give them the chance to express their wants and needs when they still have the chance to say what is important to them; it is their death – their story so lets encourage them to write it.

Photo credit: Jonel Hanopol via flickr

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