Zinnige Zorg room for improvement report - In-depth phase neoplasms: care during the final stage of life of patients with incurable intestinal or lung cancer

The final stage of life is one in which a patient is of an advanced age or has a disease and/or is in a phase of a disease that will be life-threatening within the foreseeable future. In cases of cancer the disease will generally have spread, and this is described as the palliative phase. Current cancer treatment makes it possible to control the cancer and the metastases during months and sometimes even years, while retaining a good quality of life. Nevertheless the patients still have an incurable disease.
People sometimes think that the palliative phase and the final stage of life is the same as the phase of dying. This is emphatically incorrect. The stage of dying is the phase before the end of life. The palliative phase is the phase from the diagnosis of an incurable (metastatic) disease, until death. The final stage of life is the phase of a disease that will become life-threatening within the foreseeable future. The start of the palliative phase is clear: it is upon diagnosis of metastatic disease. The start of the final stage of life (a life-threatening disease within the foreseeable future), however, is more difficult to define, because survival is more variable due to improved treatment possibilities.

Recommendations

In the report we expound on three recommendations for improving care: clarification of palliative care needs, clarification of the treatment perspective and multi-agency harmonisation. The starting point for the improvement recommendations is an appropriate treatment perspective, and the consideration this is given by the patient and the care providers involved. After this, proper harmonisation between care providers is a precondition for ensuring that, in practice, care is actually given from the patient's perspective. For this reason we elaborate on the chain of care and specifically multi-agency harmonisation. If the recommendations are implemented, patients will have more clarity about the possibilities and limitations of disease-oriented palliative treatments such as chemotherapy, radiotherapy or surgery. At the same time patients will get clarity about their options in the event they choose not to undergo disease-oriented treatment. An added effect is that the care providers involved will be more able to deploy care with an appropriate treatment perspective: care that is in keeping with the patient’s wants and his or her care needs in view of the imminent end of life.

Zinnige Zorg (Appropriate Care)

Zorginstituut Nederland’s motto is "Taking care of good health care: no more and no less than necessary". Every citizen must be able to count on receiving good health care. No more and no less than is necessary, while also avoiding unnecessary costs.
As a public organisation, the Zorginstituut assesses health care systematically. We assess whether diagnostics and (therapeutic) interventions are being deployed in a patient-oriented, effective and cost-effective manner. We do these analysis within the framework of the 'Zinnige Zorg' (Appropriate Care) programme of Zorginstituut Nederland.

This report is a summary of recommendations by Zorginstituut Nederland. The original text is in Dutch.