During the debate, RCN President Bejoy Sebastian spoke on behalf of Roswyn Hakesley Brown CBE, RCN President 2000-2002.

All of My Marbles.

Tuesday, 19th of May, marked my last day at RCN Congress. As your President in 2000–2002, I discovered that my thyroid cancer of 20 years had returned. Despite multiple positive interventions and successful spares of work with refugee nurses and the Patients Association, the development of serious comorbidities, i.e. liver and heart failure, manifested themselves.

I now find myself wheelchair-bound in the palliative care pathway.

Colleagues, I would dearly have loved to have been here today to contribute to your important debate on palliative and end-of-life care. I am very grateful and thankful for the care that I have received in my local cancer centre, which, ironically, is the modern successor to the ward in which I started my career as a young ward sister in the 1960s, little knowing that my final years would be spent under their wonderful care. I am now an NHS season ticket holder! Whenever I use it, I am always mindful to express my sincere thanks to the team. I want to extend those thanks to you today—THANK YOU FOR BEING THERE FOR US!!

However, as a nurse, later a university lecturer developing advanced practice programmes, I am very aware of the need for constant alertness in avoiding complacency by becoming the change in the end-of-life care that we want to see. I would like to share some of the insights that I have gained as a consequence of my cancer journey with you today.

The process of dying is part of everyday life for all of us. However, the actual act itself is taking place with just one person who is actually saying goodbye to everyone else. Memories, rather than forward planning, are the order of the day. Death, like birth, is a moment of huge importance.

The development of a gift between significant others, including carers, needs greater consideration in handling the wishes of the dying. It often gives them great joy to distribute much-loved treasures to people they appreciate as a thank you at this important time. The current embargo on gifting in current situations needs to be reconsidered sensitively and ethically. Last week, I gave my oncologist a newly published book which I knew he would like. He received it with enthusiasm and grace, acknowledging that he particularly liked things from patients, and asked if I would write in it. I didn’t have time to do this, as the clinic was running two hours late and the nurse needed to go home! I know that this is a complex, controversial issue. PLEASE DON’T DUCK IT.

One of the few final forward planning options left to many of the dying is, the manner of their death. With the dilemma of assisted dying still unresolved, we are left with the alternative of the not-for-resuscitation, which I have wholeheartedly signed up to. However, this is also not without its problems for those responsible for its operationalization, i.e. nurses, doctors, dentists, etc.

In the last few weeks, I have been in situations where I have needed to remind my healthcare team of my wishes, usually responded to by the observation, “But you still have all of your marbles!” My usual response being, “Yes, but that’s the problem. I know the quality of my life is very poor and no longer want to live in this way!”

That, colleagues, is the main thrust of my plea to you—please continue to forensically interrogate the evidence of the quality of life for the dying when you legislate for the care standards that you are able to deliver.

THANK YOU FOR YOUR LOVE AND COMPANIONSHIP ON MY JOURNEY.

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