Integration of early palliative care and oncological care – Is there a gold standard?
Helena Ullgren, from Sweden, examines the issues
I currently work as a coordinating contact nurse, with responsibility for patients with head and neck cancer, in the Stockholm-Gotland region of Sweden. Contact nurses in Sweden are similar to clinical nurse specialists (CNS) and nurse practitioners, depending on setting. My role is a new, advanced nursing position in Sweden which I have held for two years now. I have an overarching role in coordinating and improving care, and I am involved in all parts of the clinical pathway – from prevention, diagnostic process and treatment to rehabilitation and palliative care. Right now, the part of the patient’s trajectory involving palliative care is a large and complex part of the daily job.
Early palliative care
Since 2005, WHO’s definition states that palliative care is applicable in all stages of disease, and one of the cornerstones of palliative care is symptom management and a holistic perspective of disease. There are many benefits of early palliative care; improved symptom management and quality of life, to name just two. Some studies have shown improved survival, less hospitalisation at end-of-life, reduced emergency admissions, and that patients receiving early palliative care are more likely to report having had conversations regarding end-of-life and information regarding prognosis.
Timing and structure of early palliative care
There is no clear definition of early palliative care. In some studies it is three months before death, referral within eight weeks of diagnosis, or a clinical prognosis of six to 12 months. The interventions, structure and organisation of early palliative care that have been evaluated vary greatly. Some are in-patient consultations, some a palliative care clinic close to the patient’s home, specialised home care units, telephone consultations or a mixture of these.
Challenges around integration
In my daily practice, I see many issues with integration between acute care and palliative care. The patients often expect us to talk to each other, and there is no clear system for handovers – often we rely on written communication. Cancer patients today have more treatment, and longer palliative treatment, as well as more individualised and demanding treatments. The need for advanced symptom management and support concurrent with active treatment has a longer duration today, which leads to a “shared responsibility”: it is not one care transition, it is back and forth. (See figure below).
Moreover, there is research indicating that early palliative care is not beneficial if not integrated with oncological care. In line with our work as coordinating contact nurses, we did a clinical evaluation of emergency admissions of patients with palliative care referral. The evaluation was a mapping of emergency admissions during three months in a university hospital in Stockholm. Data were collected from electronic health care records. Out of 40 readmitted patients, only five were assessed as relevant admissions; in most cases, there had been no communication between the specialised palliative care and oncology teams before the patients were sent to the emergency department. The complexity of cancer care is increasing, and early palliative care and cancer care needs to be integrated and collaborative.
The American Society of Clinical Oncology recently updated their guidelines and these suggest that palliative care should be integrated with standard care for all patients with cancer; but there is no consensus yet on timing, and organisation, and there are barriers to early palliative care. Access to palliative care also varies widely across Europe and the world. In many regions in Sweden, we have developed highly-specialised, palliative home care units, which operate apart from the hospital.
Early palliative care has many benefits, but there is no clear definition or consensus regarding timing, organisation and how it should best be integrated. It is increasingly difficult to provide an accurate prognosis on the patient, and the complexity of care is increasing too. Care transitions are a known patient safety risk and patients can be in a vulnerable situation. Early palliative care is not just a matter of referral, and integration with the oncology team is important. Perhaps referral should be based on symptoms and not disease status? The definition of early palliative care needs clarification. Nurses play a key role in care transitions between palliative care and cancer care.
Helena Ullgren, is Coordinating Contact Nurse, Head & Neck Cancer, Stockholm-Gotland Region, Sweden; Board member Swedish Oncology Nursing Society