Incurable cancer: Patients need palliative care support early on
For the first time in Germany, patients with incurable cancer have been systematically questioned about their palliative care needs from the time of their diagnosis and at regular intervals over the following twelve months. Observations at 20 treatment centres throughout Germany show that those affected endure great physical as well as psychological suffering and require palliative medical support right from the start. The study, led from the University Cancer Center Leipzig (UCCL), has been published in the renowned journal “The Oncologist”.
So far, there has been little research into supportive care needs in patients with newly diagnosed incurable cancer and as their disease progresses. That is why experts from the German Cancer Society’s working group on palliative medicine, led by Professor Florian Lordick, Director of the University Cancer Center Leipzig (UCCL), surveyed 500 patients between the ages of 25 and 89. What made the project special was the fact that the patients were accompanied from the moment they were diagnosed and before receiving any treatment. Professor Lordick sums it up thus: “There is an urgent need for patients to have early access to supportive palliative care for a wide range of issues, including psychosocial support.” Palliative care is not about healing, but about maintaining quality of life, relieving pain, treating other physical ailments and problems of a psychosocial and spiritual nature.
Two-thirds of patients diagnosed with incurable cancer reported immediate, significant physical and emotional distress. The study paints a complex picture of the care provided by 20 cancer treatment centres across Germany, from university to community settings, from outpatient to inpatient care. Oncologist Lordick explains: “The patients were very interested in the survey, despite the fact that they were in a very difficult situation and the study required them to reveal their inner selves to a certain degree. That showed us just how important this issue is to them.”
Patients were surveyed shortly after being diagnosed with incurable lung (217), gastrointestinal (156), head and neck (55), gynaecological (57) and skin (15) cancers, and again after three, six and twelve months. The focus was on patients’ distress, symptom burden, quality of life and supportive care needs.
More than 30 per cent of respondents reported anxiety and depression shortly after diagnosis. Complaints of a lack of energy, nutritional and digestive problems, and pain were also very common. The study shows where the needs of those affected are particularly high. When comparing patients with different cancers, those with stomach, oesophageal, liver, or head and neck tumours displayed the highest level of distress over the entire observation period.
Professor Lordick believes the study results can be used to draw clear conclusions for medical practice, explaining: “Cancer centres need to have expert palliative care services, both on an inpatient and outpatient basis. These include specialised nutritional counselling, pain management, and physiotherapy and psychosocial support.” The expert from Leipzig University Hospital concludes that the results underline the necessity of introducing comprehensive symptom screening and early palliative medical care.
Professor Florian Lordick
Director of the Department of Oncology, Gastroenterology, Hepatology, Pneumology and Infectiology
Director of the University Cancer Center Leipzig (UCCL)
Title of the original publication in The Oncologist:
“Symptom burden and palliative care needs of patients with incurable cancer at diagnosis and during the disease course”, DOI: https://doi.org/10.1002/onco.13751