Date: 12 October 2018
Palliative Care is tailored care for those living with a terminal illness where a cure is no longer possible. Taking place in hospitals, hospices and patients’ homes, its aim centers on achieving the best possible quality of life, and supports not only the medical requirements, but also the social, practical and emotional needs of patients and their families.
The World Hospice and Palliative Care Alliance have chosen today, 13 October, as a day of action, to celebrate and support hospice and palliative care around the world. Their theme for 2018; ‘Because I matter,’ sends a meaningful message to patients, their families, researchers and the public alike.
Research into Palliative Care is hugely important and an area where much can be done. Advances through research could bring improved ways to provide relief from pain and distressing symptoms and greater understanding in to how those living with a life limiting illness can best be supported.
One researcher today stands out amongst others. As a patient, and herself receiving Palliative Care, Dr. Adrienne Morgan continues to work as a Medical Research Scientist; investigating cancer cells using her immunocytochemistry skills (techniques used in the study of the immune system). We spoke to her about her illness, and about her involvement in improving research into Palliative Care.
Having first been diagnosed with breast cancer in 2005, Adrienne was horrified to be diagnosed with metastatic cancer in 2010. Metastatic breast cancer (also called stage IV or advanced breast cancer) is incurable and is the most progressed stage; where the cancer has spread beyond the breast to other organs in the body.
“I was initially terrified when the Clinical nurse specialist started talking about Palliative Care services” she told us; “but the first thing I learnt was that Palliative Care is about a lot more than the end of life. I’m still alive 8 years later, so even though my condition is terminal it’s very much about quality of life.”
Adrienne quickly understood the functions of the Palliative Care team and began to appreciate their role.
“I wasn’t enjoying life as much as I felt I wanted to be but the Palliative Care I’ve received has helped keep life as normal as possible. It works differently too, as it’s the only service that treats patients as a whole person, not a collection of symptoms.”
Fatigue is a problem, and Adrienne is no longer well enough to work full time. But she continues to work as a part time volunteer, as an Honorary Senior Lecturer at Barts Cancer Institute, part of Queen Mary University of London. With her mother being one of the first women to ever train in medicine in London, she has always had an interest in science and likes that her work is “doing something useful.”
Wanting to contribute all she can, Adrienne has also taken part in research herself.
“I took part in the ‘AZURE’ trial as a participant when I was first diagnosed.” She tells us. “I was on the treatment arm and often wonder if the drugs (bis-phosphonates) contributed to my having had so much longer, as there is now research that indicates the treatment is useful in early stages.”
“Personally, I didn’t think twice about whether to take part. I think most patients are altruistic, and like knowing that even if the research won’t help them themselves it may help others.”
Speaking about the need for research in Palliative Care she says;
“We don’t know enough about the process when people die. The more we know, the more we can make it easier for people. Understanding leads to further and better care and has already influenced palliative care treatments, which have changed enormously over the last 50 years.”
“For a Palliative Care patient; knowing treatments are based on evidence and research can even take some of the fear out of it.”
In addition to all her other involvement, Adrienne is currently working with Palliative Care organisations and hospices, to explore the options around patients consenting to post mortem tissue donation for research. The idea is a relatively new one, and is based on a need to understand more about cancer and about the final processes when we die.
“It is the metastatic stage of cancer which kills, and we need to learn more, but it’s difficult to take biopsies from living metastatic cancer patients. Post-mortem tissue would be a fantastic resource for research.”
Adrienne is also involved in the ‘Independent Cancer Patients Voice’ charity, which helps cancer patients to get involved in clinical trials.
“In Palliative Care, clinicians can be too protective of patients and shy away from broaching the subject of research, but it should be the patient’s choice and they shouldn’t be deprived of the option.” She explains.
“There is a need too, to make not just the patients aware but also the relatives, so that they are in agreement and aware of the patient’s wishes.”
As our conversation drew to a close, we asked Adrienne what her wishes are for the future of research;
“I would very much like people to sign up for post mortem tissue donation. It will make a real difference to cancer, and other research. Without patients signing up and being involved it’s never going to happen.”
“Patients are vital partners with researchers in research.”
If you would like to find out more about research, or about any of the organisations mentioned in this article please visit:
Breast cancer now tissue bank www.breastcancernow.org/breast-cancer-research/breast-cancer-now-tissue-bank - this site is primarily for researchers wishing to access tissue for research. The picture of stained cells on their web site is an example some of Adrienne’s own work. Patients or members of the public wishing to find out more can email: bcibreasttissuebank@qmul.
UK Clinical Trials Gateway https://www.ukctg.nihr.ac.uk/ - this site provides information on what taking part in clinical trials and 'health and social care research involves, as well as details of the trials running in your local area.
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