Who cares for the carers?
Pancreatic cancer is one of Australia’s deadliest diseases, with the average time from diagnosis to death a devastatingly short five months. In an Australian first, a new service and study aims to support carers through the devastating impact of pancreatic cancer.
Retired engineer Milton Kirkwood was married to his beautiful wife Frances for 25 happy years. Three years ago, she was diagnosed with stage four pancreatic cancer. Sadly, just five short months later, she lost her battle with Australia’s deadliest cancer.
“The first indication we had there was a problem was when Frances experienced pain radiating from her chest to her back. A blood test showed markers for pancreatic cancer. The doctor reordered the test because the markers were so high that he thought it must have been a mistake,” said Milton. “Unfortunately, there was no mistake. A subsequent scan revealed she had stage four pancreatic cancer that was inoperable.”
“Immediately there were so many things to understand about Frances’ care, plus legal and financial decisions, while trying to support her as best as I could emotionally,” continued Milton. “Even though I had a lot of experience with cancer, having lost my first wife Judy to brain cancer, and surviving bowel and prostate cancer myself, it was a lot to deal with, especially in such a short period of time.”
Over 3,300 Australians die each year from pancreatic cancer, with the average time from diagnosis to death a devastatingly short five months. While all attention and focus rightly go to the patient, there is little scope for any thought about the impact on carers, who have minimal time to adjust.
“I am surprised that no support whatsoever was mentioned to me through the hospital system. No referral to a counsellor, psychologist or support group, nothing. While I knew I could survive the inevitable outcome, because I had been through similar experiences, it would have been so helpful to have some support. I know many people in my situation would have been completely overwhelmed. It begs the question, who cares for the carer?” said Milton.
To support carers through a loved one’s journey with pancreatic cancer, PanKind, Australia’s only foundation dedicated to pancreatic cancer, is partnering with QIMR Berghofer Medical Research Institute to trial a new service that aims to support carers through the devastating impact of the disease. The PRoCESS (Pancreatic cancer Relatives Counselling and Education Support Service) Trial, led by Associate Professor Vanessa Beesley and Professor Rachel Neale from QIMR Berghofer Medical Research Institute, aims to determine whether having a nurse provide structured counselling and education to carers of people with pancreatic cancer helps them cope with the challenges they are facing. It will also look at whether it is cost-effective for the health system.
“Carers of loved ones with pancreatic cancer are twice as likely to experience clinical anxiety than the people they are caring for, no doubt due to unmet support needs that are compounded by the incredibly short timeline from diagnosis to death,” says Michelle Stewart, CEO of PanKind. “In addition to carers being immediately confronted with the need to assist in the management of complex physical symptoms and provide emotional, financial, legal and spiritual support, they also face the impending loss of their loved one. It is a brutal diagnosis and a huge weight to bear.”
Associate Professor Vanessa Beesley, a Behavioural Scientist specialising in Psycho-Oncology, says “Our feasibility study revealed that carers highly valued having a nurse-counsellor with clinical expertise, who was someone outside of the family, to provide support through probably the toughest time of their lives. The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. The nurse-counsellor was said to become their ‘tower of strength’, helping to prepare them for what is to come and linking in with other health professionals as required. The nurse-counsellors can help carers at each stage of the journey, including dealing with diagnosis, treatment options, symptoms management, providing strategies for stress management, financial distress, enhancing relationships, end of life care planning and bereavement support.”
“By helping to give carers increased confidence to adequately manage symptoms and treatment, the study also hopes to reduce costs across the health system by reducing patient admissions to hospital. This will be measured by looking at emergency department presentations, time spent in hospital, timing of referral to specialist palliative care services, overall survival, and quality-adjusted life years.”
The project will assess the impact of the counselling intervention on various outcomes, including carers’ belief in their capacity to provide appropriate support, as well as their mental health, fatigue, supportive care needs and quality of life. All participants will be provided with general information support; however, half of the participants will also be offered counselling and education sessions with a nurse via video conferencing or telephone in order to measure its effectiveness. The counselling will be weekly for four weeks and then fortnightly for three months. Monthly sessions are then available until the end of the study if desired.
QIMR Berghofer Medical Research Institute is currently recruiting participants for the study. Participants can be from anywhere in Australia but must be the primary carer of a person diagnosed with pancreatic cancer in the last three months. People can register their interest in the study and find out more information by visiting www.pankind.org.au.
“PanKind was co-founded by Caroline Kelly, who cared for her husband Avner when diagnosed with pancreatic cancer. Caroline has also supported so many carers and families since Avner sadly lost his battle. PanKind continues to be as equally focused on supporting carers as we are on patients and are proud to continue this legacy,” says Ms Stewart.
Mr Kirkwood encourages carers not to hesitate in reaching out for support.
“Carers need to be supported in order to provide the level of care that their loved ones will require. I am so pleased to see these services now being offered. It would have meant so much to me to have that kind of support. Having an independent person with clinical expertise to help navigate such a difficult period will no doubt help so many families and patients impacted by pancreatic cancer,” finished Mr Kirkwood.