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Death and Dying Over 30 Years in the ICU: Personal Reflection

Argent, Andrew C., MBBCh, MMed(Paeds), MD(Paeds), DCH(SA), FCPaeds(SA), FRCPCH(UK)1,,2

Pediatric Critical Care Medicine: August 2018 - Volume 19 - Issue 8S - p S53–S54
doi: 10.1097/PCC.0000000000001480
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Objective: To describe individual perspective over ~30 years in a PICU in Cape Town, South Africa.

Data Sources: Personal experience and reflection, complemented by published local data.

Study Selection: Not applicable/illustrative publications of local other data.

Data Extraction: Not applicable/or other (as appropriate).

Data Synthesis: Narrative, experiential reflection.

1Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa.

2Pediatric Intensive Care, Red Cross War Memorial Children’s Hospital, Cape Town, South Africa.

Dr. Argent received funding from N Kelly attorneys, and he has received support for travel, accommodation, and waiving of congress fees for a number of national and international scientific meetings.

For information regarding this article, E-mail: Andrew.Argent@uct.ac.za

I have worked in Cape Town, South Africa, for the last 30 years, and during that period there have been substantial changes in context.

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MEDICAL CHANGES

Initially, the PICU was “medical” with predominantly emergency admissions with an infectious illness. In 1999, we combined all the ICUs in the hospital to create a multidisciplinary PICU. Now approximately half the patients are “surgical,” including a substantial number of elective cardiac surgical patients. Overall patient volumes have increased from 600 to 1,300–1,400 patients per annum, and mortality has dropped from 15% to just over 5%.

In the period 1995–2010, we were affected by the HIV epidemic (initially with no specific antiviral therapy available) with high mortality (1–3) and severe pressure on PICU beds (4). With the availability of antiretroviral therapy, there has been a profound reduction in the number of HIV-infected infants, and even infected children can now be effectively treated, with excellent long-term outcomes.

There have been major changes in PICU technology and practice. In the 1980s, we had Bird Mark 7 and Mark 10 ventilators (pressure cycled, pneumatic ventilators). Currently, we ventilate using Servo I and U ventilators or (when appropriate) Sensormedics 3100 high-frequency oscillatory ventilators and have access to nitric oxide. Noninvasive ventilatory support is also available at all times. In the 1980s, we had access to noninvasive monitoring with pulse oximetry and noninvasive blood pressure and central venous lines (usually cutdowns with water-filled manometers). Now we have access to (and routinely use) both invasive and noninvasive hemodynamic monitoring. Initially, we had access to dobutamine, dopamine, and adrenaline. Now we have access to those agents, but also use milrinone and noradrenaline. Previously there was very limited brain monitoring; now we are able to monitor electroencephalography (EEG) (direct and amplitude-integrated EEG), brain pressures, brain oxygen levels, and even biochemical changes in the brain. Renal replacement therapy has moved from peritoneal dialysis alone, to the full range of hemofiltration and hemodialysis (although we still use peritoneal dialysis extensively).

The consequence of all these changes is that we are now able to successfully stabilize and resuscitate many patients who previously would have died (often soon after admission). Not only that, but the developing transplantation services have meant that some patients are becoming potential donors during their stay in the PICU.

Tracheostomy and long-term ventilatory-dependant children have been moved out of the PICU for almost all their care (5). This has effectively pushed up the complexity and acuity of patients in the PICU.

End-of-life care has moved from failure of acute resuscitation (in most situations) to deliberate decision making in the context of a patient with profoundly limited prognosis (exacerbated by resource constraint), but with potentially normal level of consciousness and awareness. In many ways, it feels as if we have moved from being failed “rescuers” to being the people who have to make the decisions that allow death.

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SOCIAL CHANGES

Thirty years ago the majority of both patients and staff were Afrikaans speaking. Now the majority of both patients and nursing staff (the same is not yet true of the medical staff) are Xhosa-speaking and the proportion of Xhosa-speaking patients who are proficient in English has also increased significantly.

More recently, there has been an influx of people from other parts of Africa into South Africa, and thus we have had to develop systems to deal with a wide range of languages. Communication with many of these families has been further complicated by concerns (from the family) about immigration status, rights to healthcare, etc. Thus, we have had to work through the challenges of delicate conversations, with difficult nuances either through interpreters, or perhaps even more worryingly with people who may not understand English as well as we think they do.

There may have been a gradual change in the expectations of the families who come into our care. In the early 1990s, many were simply grateful for intensive care and had a life experience that suggested that: it was not unusual for children to die. If death occurred, it was one of those events that had to be accepted and dealt with (no matter how hard). Increasingly, people have an expectation that children don’t die, if death happens, then there is a reason to explore “what went wrong” and who is to blame. Where parents would have accepted a medical opinion that there was no hope of survival or reasonable outcome, increasingly parents are demanding that we “do everything” and not consider limitation of intervention.

We used to have discussions about end-of-life care with only the biological parents present. Over time, we have moved increasingly to the “family conference.” When discussions around end-of-life issues (and other issues) need to take place, we invite the parents to invite anyone they wish to be part of the process. It is not infrequent for 20 or more people (of all ages) to arrive for the meeting. With the larger groups, communication has been improved in many ways. It has taken the pressure off the parents as to how to explain all that is going on to their families and close friends. Often the communication has been much more interactive as multiple people (often with less intensive emotional involvement) are able to ask for (and receive) clarification on issues that arise. Often the community has taken on some shared responsibility for decision making that parents have just found overwhelming. Trust seems to have been improved—there is a sense that if the healthcare team are prepared to be fully open with so many people, it is very unlikely that we have anything to hide … Of course there are potential concerns about confidentiality and a need for care about sharing certain information, but overall the benefits have been overwhelming.

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PERSONAL CHANGES

Deaths related to HIV infection during the early HIV epidemic, before the availability of effective antiretroviral therapy for children (and adults) were particularly challenging. For most parents, the diagnosis of HIV infection in their children, was also the point of diagnosis of HIV infection for them. Thus, one was dealing with parents who had been informed that their child was dying, and also that they had a limited lifespan (with a particularly grueling illness) ahead of them. It was further complicated by issues such as the mother was married and had been faithful—thus the diagnosis was proof of a particularly dangerous infidelity on the part of their spouse; the mother knew she was infected, but had not informed the father (who was now likely to find out about the diagnosis). This entire situation was incredibly challenging as one dealt with the rights and responses of parents; and one’s own sense of hopelessness.

Over the years, there has been an acceptance, that dealing with death is one of the most stressful components of our work in PICU. We have discovered that we need a wide range of potential support structures, as no particular structure works for everyone and we have worked through support groups; caring for the carer groups (teaching people reflective skills and processes to deal with their own issues); debriefing meetings after particularly traumatic deaths; “psychosocial meetings” to ostensibly talk through how to manage the families (but also to talk through how to manage ourselves); chat groups; external support teams; involvement of religious leaders in care around end of life—and afterward for the staff; and many different processes to try to provide some support that meets the needs of most of the staff.

For me it seems that close involvement in the process of dying: talking about it to the team and with the family (and extended family); planning and carrying out the process; talking to the family after the death; meeting with the family sometime later, etc, has been deeply helpful to me in my process of coming to terms with death. It is sometimes more traumatic to be on the sideline, than deeply involved with the process.

Strangely, involvement with death and dying in the PICU remains an enormous privilege, to be treasured. But equally a demanding and often exhausting process.

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REFERENCES

1. Argent AC. Managing HIV in the PICU—the experience at the Red Cross War Memorial Children’s Hospital in Cape Town. Indian J Pediatr 2008; 75:615–620
2. Cowburn C, Hatherill M, Eley B, et al. Short-term mortality and implementation of antiretroviral treatment for critically ill HIV-infected children in a developing country. Arch Dis Child 2007; 92:234–241
3. Zar HJ, Apolles P, Argent A, et al. The etiology and outcome of pneumonia in human immunodeficiency virus-infected children admitted to intensive care in a developing country. Pediatr Crit Care Med 2001; 2:108–112
4. Argent AC, Ahrens J, Morrow BM, et al. Pediatric intensive care in South Africa: An account of making optimum use of limited resources at the Red Cross War Memorial Children’s Hospital. Pediatr Crit Care Med 2014; 15:7–14
5. Groenendijk I, Booth J, van Dijk M, et al. Paediatric tracheostomy and ventilation home care with challenging socio-economic circumstances in South Africa. Int J Pediatr Otorhinolaryngol 2016; 84:161–165
Keywords:

death; dying; middle income country; pediatric intensive care

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