Active preparation for the end of life with patients with advanced cancer: A way to reduce stress and increase self-determination?
Talking about and clarifying questions about the end of life early on can have a positive effect on quality of life in the last phase of life. This ran-domized study will investigate the effect of a structured approach for clarifying open questions early on.
Project description (completed research project)
Persons with progressive cancer have a great many questions and often experience massive stress and strains. They have unanswered questions about the physical impairments that they can expect, what they can do about their own helplessness, and how and where they should spend the rest of their life. Persons with cancer want to know what medical treatments are available, what measures they can expect, what professional and private support will be needed and where their family members can get support.
This study, called the SENS study, will investigate to what extent sys-tematic discussion of these questions as soon as possible can lead to a discernible reduction of stress in patients and their family members. Parallel to the regular oncological treatment, in one or more consulta-tions a palliative care team member will use a specific document to dis-cuss four important areas (“SENS” is the acronym in German for the four areas):
- Symptom management: What are the main symptoms, and what symp-toms cause distress? For helping the person to help himself/herself, what must be learned?
- Decision making: What individual goals can be defined and how can they be best achieved? What measures are no longer desired?
- Network: Who is available for caring and supporting at the chosen location? What is lacking? What should be done in an emergency?
- Support: What persons close to the patient need support and what persons are at risk of being overburdened by caregiving?
There is sound evidence in the research literature that discussions at an early stage and advance care planning have a favorable effect on cop-ing with this difficult phase of life and ultimately has a positive effect on the person’s life time remaining, mainly through stress reduction. We will examine the extent to which systematic, problem-oriented advance planning, together with tumor-specific treatment, facilitates and pro-motes partnership-like division of tasks between patient, family members and health care professionals. In addition, this can also help to reduce emergency measures, insufficient clarity and unnecessary costs.
A structured early palliative care intervention for patients with advanced cancer – a randomized controlled trial with a nested qualitative study