Palliative and end of life care as a human right

By Catherine BestOne Chance to Get it Right is a maxim associated with the Liverpool Care of the Dying pathway; a pathway previously used to guide the care of dying patients in the UK healthcare system. Developed in the late 1990s and undergoing incremental changes, until recognised that this pathway represented a number of significant failings, led to the publishing of a damning report by The Leadership Alliance for the Care of Dying People in 2014. When reading this report, it is evident that we were failing to make sure ‘we got it right’.

This blog does not intend to revisit this pathway, but to raise awareness that as healthcare professionals, we have and always will have only one chance to get it right in palliative and end of life care. Our skilled and compassionate actions must align with our ability to speak empathetically with forethought and in hindsight, of what has gone before us, and what is yet to come.

There will of course, be many narratives associated with excellent patient and family centred palliative and end of life care, and this must undoubtedly be recognised. Essentially however, the impact of a pandemic, the involvement and findings of the World Health Organisation, the United Nations and the European Association for Palliative Care have all brought palliative and end of life care into the fore.

And with Goal 3 – Good Health and Wellbeing, of the United Nations 17 Sustainable Development Goals, making explicit the need for Universal Health Coverage  and the need for improved palliative and end of life care, it is evident that more needs to be done.

Furthermore, the latest SDG Report 2022, which shares the many ways in which we can learn, develop and share new ways of working, makes for interesting reading, and emphasises the point that we can all learn from the innovation of others.

What is Palliative and End of Life Care?

Although palliative and end of life care are inextricably linked there are differences.

Palliative care for example, is defined by the WHO as a patient-centred approach associated with life-threatening illness, which focuses on promoting quality of life and relief of symptoms whilst end of life care is described by NHS England, as care provided when someone is likely to die within the next 12 months, although this can be challenging to predict; and for some conditions, end of life care may be provided for months or even years, which simply adds to the confusion. What is evident however, is that end of life care should begin as soon as needed.

The Cornerstone of Humanity

 What is perhaps I hope undeniable, is that providing high quality evidence based, compassionate, palliative and end of life care is the cornerstone of humanity. It is the one time when we need to get it right and yet according to the World Health Organisation only 14% of people globally, who need such care, actually receive it.

In October each year we recognise Hospice Care Week. Combined with Dying Matters Week in May and World Hospice and Palliative Care Day in October, it appears at least on the surface, we have indeed got it right, after all increasing awareness reaches more people, creates more opportunities for sharing knowledge and expertise and involves patients and their families; disappointingly however, this is simply not the case.

The theme for the World Hospice and Palliative Care Day 8th October 2022 was Healing Hearts and Communities. In a world where attempts to curb the impact of the pandemic continues – Why not stop just for a moment and think about what Healing Hearts and Communities means to you.

You may have considered the harrowing impact of Covid-19, when so many dying patients were unable to feel the comforting hand of a family member. You may also have considered how every single working day, you fought hard to sustain life; the right to practice safely and the right to keep you and your family safe.

What you may not have considered however, is the impact of Covid-19 on global care. How your actions then and now continue to impact on the health and wellbeing of a global society, and how we can all work collaboratively to heal hearts and communities, not only within our local communities, but also nationally and internationally.

Nurses who seek to understand and develop the skills necessary to positively impact on the palliative and end of life care needs of patients, can make the last few months, weeks, days hours, even minutes and seconds, so much more comforting when we step back and tune in to the needs of patients and their families. After all it is something that we can all be assured of; that we are going to die. Whether we do this with compassionate nurses by our side, is entirely the gift of the nursing profession.

The challenge to reduce suffering  and ensure the delivery of safe and effective palliative and end of life care is not only a local and national challenge but a global challenge. Understanding how the modern-day palliative and end of life care movement began in the UK, can help to guide your learning and practice.

Dame Cecily Saunders

Dame Cecily Saunders the pioneer of hospice care may not have had a pandemic to deal with, but she knew the value of healing hearts and the importance of community-based palliative and end of life care.

Founding the first Hospice, St Christopher’s in 1967, Dame Cecily went on to become one of the most prolific advocates for palliative and end of life care, understanding the need for ‘total pain’ management not simply that associated with physical pain, but also emotional, social, and spiritual.

Who can forget, those of us, who immersed ourselves in the ground-breaking book, ‘On Death and Dying’ written by Swiss-American Psychiatrist, Elisabeth Kübler-Ross, who worked hard to promote the importance of treating people at the end of life with respect, transparency and open and honest communication. Her book at the time, revolutionising and humanising the care of dying patients.

From the aspirations of Dame Cecily and Elisabeth Kübler-Ross, to the more contemporary aspirations of the World Health Organisation, advocacy for the delivery of safe and effective high-quality palliative and end of life care are strong. But is this simply falling on deaf ears as hospices bear the failure of governments to adequately fund hospice care? And disappointingly, despite the efforts of The All-Party Parliamentary Group (APPG) on Hospice and End of Life Care, which campaigns for high quality and accessible palliative and end of life care for all, there is still a long way to go.

Today many patients, medical and nursing staff and organisations, have embraced the opportunity to make a difference. Patients such as Dr Kate Grainger, co-founder of the Hello my Name is… campaign, is just one example of the bravery of a dying woman, whose need to improve the way we practice in healthcare, may just help to reap infinite reward.

And organisations such as The International Council of Nurses, who in 2018 promoted the theme for International Nurse’s Day – Nurses A Voice to Lead Health is a Human Right, which recognised the unique contribution that nurses make in transforming health care and health care systems. What this tells us, is from individuals, to teams; local to international organisations, we can all make a difference. 

Conclusion

We know that we only have one chance to get it right, locally, nationally and internationally.

So, as nurses let’s start to think more creatively than we have ever done before. Nurses now and of the future, seek to understand and embrace the challenge of being a global nurse. Organisations; seek insight into the Nursing Now Challenge managed by the Burdett Trust and provide our current and future nurse leaders with opportunities to become the leaders, movers and shakers of the next decades and beyond. It is essential that we all, as healthcare professionals, work collaboratively with our policy makers and governments to drive forward new and innovative ways of working, and become global change agents.

The slogan ‘one chance to get it right’ should stay fixed in our hearts and minds and be passed down through generations of nurses, physicians, health care workers, social workers, social care workers, policy makers, physiotherapists, and occupational therapists; MPs, and governments; for that’s all we do have; ‘One Chance to Get it Right’ – and that chance is now.

 

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