A DIFFERENT VIEW

Chronic patients, burdensome interventions and the Vietnam analogyAnnie Janvier (annie.janvier.hsj@ssss.gouv.qc.ca, anniejanvier@hotmail.com)1, Steven R Leuthner2

1.Department of Pediatrics and Clinical Ethics, Neonatologist and Clinical Ethics, Sainte-Justine Hospital, Sainte-Justine Hospital Research Center, University of Montreal,Montreal, QC, Canada2.Department of Pediatrics, Medical College of Wisconsin, Children’s Hospital of Wisconsin, Milwaukee, WI, USA

CorrespondenceA. Janvier, M.D., PhD., Department of Pediatrics andClinical Ethics, University of Montreal, Neonatologistand Clinical Ethicist, Sainte-Justine Hospital, Address:3175 Chemin Cote-Sainte-Catherine, Montreal(QC), H3T 1C5, Canada.Tel: 514-345-4931 ext 3305 |Fax: 514-345-4822 |Emails: annie.janvier.hsj@ssss.gouv.qc.ca;anniejanvier@hotmail.com

Received28 March 2013; accepted 9 April 2013.

DOI:10.1111/apa.12263

Adriano is 6 months old. He has been in hospital all hislife. He was born at 30 weeks of gestational age and wasdoing well until he had fulminant necrotizing enteroco-litis at 3 weeks of age. He developed strictures, neededthree surgeries, and was left with short gut syndrome andsevere bronchopulmonary dysplasia. His downwardspiral has been happening slowly over 4 months. Adri-ano has never fully fed nor been extubated very long.Adriano was re-intubated this week for another septi-caemia. He needs heavy sedation for adequate ventila-tion. We think we are probably prolonging theinevitable, but the parents still have a little hope. Someof us try to maintain hope but with each ‘battle’ hefights, it is more and more difficult to think that Adrianocan survive.His parents are loving, intelligent, dedicated, kindparents. They were told many times their son couldand probably would die without ever going home. Hewas already baptized during his fulminant NEC. Theyreminded us of this: ‘We know, but he won all thebattles. It is the sixth time he is supposed to die. We can’tlet him down after everything he went through, thismight be his last battle.’ We know we can probably makehim survive this episode, like all the other ones, but

somehow, we hope our therapies will stop working. Wedo not feel we are helping Adriano and we feel trapped inthis vicious circle without an exit strategy.

We call this the Vietnam effect. For babies like Adriano,his parents and his providers, this ‘war’ analogy beginswhen aggressive intensive care starts or at the first signif-icant complication. While we wish we did not have to enterthis war, we typically enter knowing/thinking it is the rightthing to do. Most babies who are born at 30 weeks of GA,like Adriano, are not intubated and do not have NEC. Butwhile many babies have a relatively simple intensive carestay, others have many adverse events. We rarely start life-sustaining interventions with an ‘exit’ strategy other thancure or survival. But sometimes things go terribly wrong. Astime goes on, and battles for Adriano’s life increase innumber and damage, the war seems less and less likely to bewon. But we have invested so much. Parents hope this is thelast battle to fight that it is only a temporary setback, butwith each battle won, it becomes harder to not fight the nextone. Parents even call Adriano ‘their fighter’. We do notknow when to retreat.

This war analogy is meant to describe situation in which apatient goes through many burdensome treatments is notsignificantly improving, and for whom parents or healthcareproviders cannot reorient care: it is accepting defeat.Patients accumulate many complications. They are notpatients who are imminently dying, but they would withoutintensive care. In fact, we may sometimes catch ourselveswishing Adriano was imminently dying, that one of hissepsis episodes lead to his death. The more we invest in thiswar, the harder it becomes to acknowledge defeat. Having

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ª2013 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2013 102, pp. 669–670 669

Acta Pædiatrica ISSN 0803-5253

invested so much into the fight, it becomes hard to retreat.It may feel like ‘giving up’.

The focus of the ethical debate in neonatal medicine hasbeen on when to withhold interventions for extremelypreterm infants in the delivery room, in other words, shouldwe ‘go to war’. Knowing when to withhold is important, butknowing when to withdraw life-sustaining interventions isan urgent line of investigation. There are clearly many ‘war’that are won, as more babies survive and many of themsurvive with better outcomes. However, modes of deathhave changed in neonatal care. The length of the wars weare losing are getting longer and more drawn out. Manydeaths still happen early on in the first weeks, but manyhappen late, after months of intensive care.

There are many casualties in Vietnam effect situations.The babies are the obvious, but also the family, thehealthcare professionals and society. A casualty for thebaby could be their death, but it might also be the time ofsuffering until that death. A casualty for the family couldbe the loss of their child, but it might also be the loss ofwhat their life was or was going to be, the suffering ofrelationships within the family. But perhaps giving achance and not ‘giving up’ on your baby eases this pain.A casualty for the medical professionals might be thesense of defeat in a life lost, but might also be the moraldistress of causing harm and suffering, the disruption ofrelationships within units between healthcare providers orburn out. At a societal level, there is distress about themoral obligation to help the vulnerable and the costs.

IS THERE AN EXIT STRATEGY? SPEAKING ABOUT DEATHHow do we get out of the vicious spiral of Vietnam effectsituations? The first step would be to recognize when weare in a war we cannot win. But this takes someprognostication that may or may not have certainty.There is no easy way out. Optimizing communication andcontinuity helps. We sometimes forget to speak aboutdeath, often focusing on the immediate battles, such aswhich bacteria and which antibiotic to use to kill it, howthe blood pressure responds to adrenaline, or how Adrianis getting ‘stable’, again. Each battle is an opportunity todiscuss the meaning of life, NICU, uncertainty and death.It is not rare for parents to ask us ‘is my child dying?’,‘what is the worst case scenario at this point?’, ‘Howwould he die?’ Many escape these questions via genericanswers such as ‘we all die one day’, ‘we are in an NICU,everybody is at risk’, ‘He is stable and not dying at themoment’. We should have the moral courage to speak thetruth. Knowing how babies die in our units, we ought toprovide the ‘best’ and ‘worse’ case scenarios, but impor-tantly have the courage to tell families where we reallythink their baby falls on that spectrum. For Vietnameffect situations, discussions should be less about curingand fixing and more about healing, comfort, how to deal

with uncertainty, hopes, regrets, guilt and what kind oflife / death we want for our children.

Many ethicists claim withholding and withdrawinginterventions are ethically equivalent. Parents and staffmight perceive them as being very different – emotionally,ethically and clinically. When we have discussions with afamily about starting life-sustaining interventions, do wespeak about death enough? We could speak about deathand disability and what threshold of medical interventionsand all its benefits and burdens make it worth applying.There may be battles, whether won or lost, which lead tomore certainty of reaching that threshold that might alloweveryone to consider withdrawal of life-sustaining inter-ventions before it causes more pain and suffering. Redi-recting intensive care may vary with the value of theparents: some may entail withdrawal, while others mayentail withholding escalations. We should acknowledgehow hard it is emotionally and psychologically to with-draw when we have invested so much. When the familydoes not agree to reorient care, a common response as aphysician may be to then keep going, often trialling somemedical care that is purely experimental in this situation.We are not ethically required to offer or provide this care.In these situations, we think that supporting the parent’sautonomy is achieved more through supporting theirvalues and goals than through supporting their psycho-logical inability to stop. Learning how to begin tospeak about death at the beginning of the hospitalization,rather than the end, may help prevent some of thesesituations.

One night, while on maximal respiratory support, Adri-ano became hypoxic and bradycardic developing thecharacteristic white and purple blotches that we see whenbabies are dying. ‘He can’t die without his parents, notafter all this!’ Adriano’s nurse started the U2 CD ‘All thatyou can leave behind’ and skipped to song no. 2,‘Adriano’s song’. A couple of minutes later, his parentsarrived. ‘Adriano is dying, you should hold him’, hisprimary nurse said. Adriano’s parents spontaneouslytook their shirts off, the way they did for kangaroo care.They both sat down on the same armchair, the mother onthe father. They held their baby close during his lastminutes.They came back today, a year after his death. Theywanted to see their ‘son’s bedroom’ and his aunties(primary nurses). They wanted to speak to us, to thank us.We are the only ones who knew their son, who saw himgrow, who witnessed his short life. They wanted to hearabout his eyelashes, about the way he often smiled andfarted in his sleep, how much he liked physiotherapy,sucrose and his special U2 songs.

CONFLICT OF INTERESTAnnie Janvier has no conflicts of interest.

670 ª2013 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2013 102, pp. 669–670

Chronic patients, burdensome interventions Janvier And Leuthner