Dr Mieke Visser, Associate Professor in Family Medicine at the University of Rwanda, is the first author of a systematic review published in the journal, Critical Care. Here, Dr Visser shares some personal insights and experiences that led to the research study.
On 15 November 2005 my close friend and legal partner, Martin Mukarutabana, died after being treated for 20 weeks in two different intensive care units (ICU) in Western Europe. She must have undergone close to 2,000 painful interventions during this period, under constant bleeping, day and night, of her life-supporting machines: insertion of lines, (drainage) tubes, broncho-, gastro-, colonoscopies, X-rays, CT scans under contrast, suctions, measurements, and moving her from the respiration machine. She was almost always conscious and had indicated clearly that she wanted to stop treatment after six weeks in the ICU following her liver transplant.
Martin was a kind woman, always interested in other people and caring for them. When she died all my memories of her died with her, what remained was the memento of her suffering during those 20 weeks. It was impossible to remember any of the events that we had shared together before. My memory consisted of all those interventions, her resistance, when she had the strength, and especially her suffering. What also remained was a deep disbelief of how this could have happened; neither I, as a physician, nor Martin, a midwife and registered nurse, had been able to convince the intensive care physicians that she did not want the treatment to continue. Also ingrained in my memory were the physicians who did not listen and continued until all possible treatment options were exhausted; and Martin who had died without proper sedation or any other palliative care intervention provided by the intensive care team. 
Several years later, Professor Luc Deliens and Professor Dirk Houttekier of the End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium, supported my request to research into palliative care in intensive care and agreed to assist me with this systematic review.2 We used the quality indicators for end-of-life care in the ICU developed by the Robert Wood Johnson Foundation’s Critical Care End-of-Life Peer Workgroup. We found 90 different physician-related barriers for quality communication and patient- and family-centred decision-making in end-of-life care in the ICU, related to physicians’ knowledge, attitudes and practice One barrier, related to physicians’ attitudes, is the narrow interpretation by ICU physicians of when a patient is actually dying, preventing the provision of palliative care until the last moment, and thus to preparing the patient and family for the dying process. And regarding the decision to forgo life-sustaining therapy, ICU physicians were more worried that they might miss something treatable than that they might harm patients with the prolongation of treatment and the dying process, even when this was against the patient’s preferences. The physicians’ focus is on the small percentage of patients who will survive, and not on the larger number who will not and therefore have to undergo intensive care treatment before they die. The review (which is available to download free of charge) appears to expose some of the causes of what happened to my partner Martin Mukarutabana. The barriers we found need to be addressed to improve the quality of end-of-life care for patients and their families in the ICU.
I am very grateful for all the assistance I received from Dirk Houttekier and Luc Deliens in completing this review.
- Heijst, A. van, Leget, C.J.W. & Visser, M. (2012). Lost in medical treatment: doctoring with borders. Clinical Ethics, 7 (2), 54-61. doi: 10.1258/ce.2011.012018.
- Visser M, Deliens L, Houttekier D: Physician-related barriers to communication and patient and family-centred decision making towards the end of life in intensive care: a systematic review. Critical Care 2014 Nov 18;18(6):604 DOI: 10.1186/s13054-014-0604-z. This article is available to download.