Terminally ill patient Megan McClay and her husband, Dimitar Kashchiev, took part in a photographic project that was created by me and the team at Same but Different to highlight end-of-life care experiences. We are calling for more honest and open conversations around the care people receive when choosing to die naturally, particularly as there has been so much recent focus on assisted dying.
Megan’s dying wish is that these images lead to thought-provoking conversations which result in more support for people.
"Being an integral part of this powerful photography and having the opportunity to do this work was very hard on us both emotionally, but incredibly rewarding and important to us. The project inspired us to have difficult dialogues surrounding end-of-life care, both with one another and within our inner circle of loved ones. We are fortunate to have an unwavering bond that enabled us to show in these scenes our vulnerabilities, our stark fears and anxieties in the context of our reality, which is devoid of the stability of time, but nuanced with end-of-life, death, and uncertainty as our constant companions. We feel proud to have done this, and sincerely hope and believe this will ignite lasting change." — Megan McClay and Dimitar Kashchiev
Following the death of my mother in 2020, I set out to explore the experiences of others who have faced end-of-life care, whether as terminally ill patients, carers, or healthcare professionals. Working with the team at Same but Different, an organisation that harnesses the arts for positive social impact, I interviewed 18 people with first-hand experience of end-of-life care. This included Megan and Dimi.
We were privileged to speak to so many incredible people who shared their own deeply personal experiences of end-of-life care. Every single participant stated that they believed it was essential to encourage more conversations around dying. Knowing that it is extremely difficult to get people to engage with this topic, we hoped these images would spark conversation. Megan and Dimi have been a huge inspiration, and whilst the subject matter was extremely difficult, they fully embraced the experience.
We always try to ask ourselves "so what?" when doing something like this, and for this reason, we also teamed up with North Wales Medical School and Betsi Cadwaladr to create a report looking at the findings. We hope that the images allow us to spark conversation in the community and that the report influences policy decision-making around end-of-life care.
Every layer of detail was carefully chosen to provoke thought and encourage discussion among viewers. By visually arranging these meaningful elements, the photographs hopefully serve as a poignant representation of the emotional and practical aspects of end-of-life care, capturing these experiences with sensitivity and depth.
In collaboration with Annie Hendry and Emily Holmes from North Wales Medical School, Bangor University, and Dr. Marlise Poolman, Betsi Cadwaladr University Health Board, the discussions and interviews were carefully examined, forming the basis of an in-depth report which was funded by Awyr Las, the North Wales NHS Charity.
“This work highlights the need for open and honest discussions about death and dying. Those nearing the end of life value clear communication about what to expect following a life-shortening diagnosis. Communication around preferences for place of death and symptom management reassured patients and carers that they were making informed decisions and meant that healthcare professionals were able to provide the required support. The knowledge that the patient had the death they wanted can also ease the grieving process for those they leave behind. People need to be aware early on of the services and support they can access, and provision should be made for those living in rural locations who may experience more difficulty,” said Dr. Poolman, Palliative Care Consultant.
The series will be exhibited online as part of their new Dying to be Heard project via the Same but Different website. The project not only raises awareness but also fosters meaningful conversations that could influence future care practices and policies. The Dying to be Heard project is being funded by the National Lottery Community Fund Wales.
More info: samebutdifferentcic.org.uk
What matters most?
In this image you can see Megan surrounding by care givers. Each person (other than her husband Dimi) is a health care professional.
Dying to get there - Rurality
Living in a rural area was highlighted as being an added burden when receiving treatment and in accessing end of life care. The difficulty in getting to and from hospitals for treatment as well as limited resources and communication difficulties when cross border facilities were accessed were said to be issues
'Patients’ is a virtue - Diagnosis
“I experienced this way too many times, especially when I have treatment. From the moment we get there, the car park is full, you can’t park anywhere. There’s volunteers in the telling you to leave. So the second you get there, you’re being told to leave. Reception is manic and you have to fight to be able to get a chair. It is surreal because each person has their own story. From the old couple playing cards, the young lady having the same treatment as me making jokes and laughing or the old lady staring vacantly. It just reminds me of that, of like we’re all just kind of waiting.” Megan
In the dead of night - Societal issues to dying
Several respondents talked about the need to protect their partner or family from the harsh realities of dying. Additionally all respondents said that in order to ensure more community understanding and support for those going through end of life care there needed to be an honest and open dialogue
Best laid plans - End of life care planning
Conversations showed the importance of individuals with terminal illnesses being able to talk openly and honestly about their wishes for after they are gone. One participants said “It was really hard to start planning for my death but weirdly it freed me to live my life. Once I had made plans I knew there would be less of a burden for my family when the time comes”
Last Orders - Conversations around Dying
Our research has shown that many individuals find solace in various sources as they approach the end of life. One of those is the desire to explore religion or spirituality. It was important to show that it does not always occur just in religious places of worship.
Broken - A good death
Several patients and carers explained that at times it felt relentless when trying to contact people for help. Whether it is calling to find a way to access pain relief or simply to make an appointment “the system feels broken”