Palliative care – #BecauseIMatter!

Categories: Care, Community Engagement, and Featured.

Dr Helena Davies, WHPCA Direct Stakeholder Trustee, explains the motivation behind this year’s World Hospice and Palliative Care Day theme, #BecauseIMatter, in her foreword to the World Day toolkit.

The theme for this year’s World Hospice and Palliative Care Day is: Palliative care – #BecauseIMatter! This has great relevance to me at a personal level and also as an advocate for palliative care for all those in need of it globally.

Palliative care is a basic human right that should be an integral part of all Universal Health Coverage (UHC) programmes. Central to palliative care is the goal of optimising quality of life for individuals with serious or life-limiting illnesses. Treatment of pain to allow a life to be well lived is key, but so also is holistic care with attention to physical, psychological, social and spiritual needs.

Until my mid 30s I was the stereotypical picture of health and fitness; very sporty, cycled everywhere, worked as a consultant paediatrician, travelled frequently and enjoyed the delights of raising two small boys. In 1997 aged 36 I was diagnosed with an inflammatory disease needing steroids and a range of other medications to control it. I had six months off work in early ’98 and again in 2000 but over the 10 years from ‘97 to 2007 despite needing medication and having ups and downs I lived a full and busy life.

However, a major flare with muscle and nerve inflammation in 2008 resulted in my losing a huge amount of mobility and being discharged from hospital dependent on an electric wheelchair, unable to work and on a range of medication.

Over the last decade I have had multiple hospital admissions and acquired many new diagnoses, including breast cancer. I have had to come to terms with a very different life in my 40s and 50s than I had imagined, lived in the context of serious life-limiting illness. However, input from palliative care has enabled me to have a good quality of life, albeit framed within this new context.

I have been also been fortunate that excellent palliative care has been provided free within the UK’s National Health Service (NHS), and perhaps most importantly, I have felt that I mattered. I have been listened to, so that my healthcare providers understood what mattered most to me and were able to make treatment decisions and options available to me based on this knowledge. Palliative care has allowed me to function as well as possible within the context of my physical disabilities, to engage in life despite my limitations and to retain as much of my dignity as possible.

However, clear issues still exist around the globe. As an example, in India until as recently as 2014, unnecessarily restrictive regulations meant that it was almost impossible to access oral morphine for the treatment of severe pain. In this context, I wouldn’t have been able to access this basic pain relief for five of the nine years I have received palliative care.

Palliative care is deemed a basic human right, that should be available to all regardless of their social, political or economic background. In countries where universal health coverage does exist, palliative care should be an integral part of the system and not an afterthought as people stand on death’s door. Importantly, patients, who are the direct stakeholders affected by serious/life-limiting illness, should have input into all aspects of palliative care from influencing government policy to being at the centre of their own care.

World Hospice and Palliative Care Day is an opportunity for anyone and everyone to make a difference. To advocate for ourselves or on behalf of those affected by serious or life-limiting illness, particularly those in need in low and middle-income countries (LMICs). The Lancet Commission on Palliative Care and Pain Relief emphasised both the disproportionate number of individuals with serious life-limiting illness in LMICs and the poor access to palliative care, even simple pain relief, for many of these individuals. An essential palliative care package for these countries described by the Lancet Commission would cost only $3 per person.

I have been lucky. The context within which palliative care is provided inevitably varies enormously. Countries have different methods of healthcare delivery and many do not have palliative care as an integral component of healthcare. Despite this we must highlight the need for palliative care and the involvement of direct stakeholders at all levels.

We need voices at International and National policy levels, at local hospice, village or town levels, in the development of teaching and research materials and in the development of palliative care packages. This will help to ensure the needs of the patient are met and palliative care packages and policies don’t simply reflect the world view of the individuals who are in power where they are developed.

People affected by serious and life limiting illness have been involved in the development of the messaging and materials for World Hospice and Palliative Care Day from the beginning. People from around the globe have generously shared their stories and what is really important to them. The key statements encapsulate this.

We are asking you to listen to individuals affected by life-limiting illness, to support them in demanding essential palliative care and to demand palliative care for everyone who needs it, everywhere but especially in LMICs.

The World Hospice and Palliative Care Day toolkit provides you with resources that can be modified for your setting to help you share the key messages and sub-themes.

The Toolkit is also available in Word format, allowing you to translate the text into your own language, and add this to the designed template.

Thank you for your help! #BecauseIMatter.