Decision-making and Poor Prognosis: When Death is Silenced by Action

ABSTRACT

In the hospital milieu, daily questions relate to highly invested areas such as quality of life and death issues, choices to continue or stop active treatment, and the legitimacy of those who take part in such decisions. Stemming from an ethnographic study carried out in a hematology-oncology transplant unit in a Montreal pediatric hospital, we discuss the decision-making process (or lack thereof) when a patient faces poor prognosis and the change of trajectory from a curative/disease directed to a palliative perspective. The intricate relationship between science, caregiver, and care receiver sustains action even when (near) death is the probable outcome.

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RÉSUMÉ

Dans cet article nous interrogeons la prise de décision qui jalonne la grande maladie chez les enfants. En milieu hospitalier pédiatrique montréalais (et en particulier ici à l’unité de greffe de moelle osseuse) la mort et la vie se côtoient de près et appellent souvent des décisions délicates qui transformeront un projet thérapeutique d’une vision curative (et de guérison) à un accompagnement (et soins palliatifs). Lors de pronostics sombres, une relation complexe s’installe entre la science, les soignants et les soignés donnant lieu à des trajectoires où prime l’action même lorsque la mort se dessine.

KEYWORDS:

• Decision-making
• hope
• medical culture
• oncology
• palliative care
• pediatrics

Acknowledgments

We are indebted to our medical colleagues with whom we share this quest and grateful to HCPs and families alike for their time and openness in discussing personal and professional challenges. The loss of loved ones and perhaps more so the loss of children weighs heavily on all who are close. We are depositories of these episodes of life and hope to justly further some of the issues that they raise. A special thanks to Sandra Hyde for her enlightening comments on a prior version of this paper as well as the reviewers who enhanced our work by their remarks and suggestions.

Notes

1. Prior research in pediatric intensive care and hematology-oncology units across Canada (Fortin and Maynard 2018) left a question from the field unanswered: “when do we stop?” While addressing adult and elderly care, Kaufman (2015) and Gawande (2014) ask the same question. This study (in many ways exploratory) tries to answer this repeated question by specifically focusing on decisions that shape therapeutic paths, whether disease directed, palliative or both.

2. In a similar way in this hospital, the clinical ethics team brings together health care providers, hospital workers and former patients’ parents who assist local teams, patients and families in shared decision-making when called upon by either party. They favor a reflective/reflexive approach with all involved over ruling practices (Payot and Janvier 2015).

3. The transplant staff members that took part in our study are: 3 transplantation MDs from the unit, 1 MD – clinician-researcher (myeloid leukemias), 1 MD – immunologist, 2 nurses (1 bedside, 1 coordinator) and 1 psychologist.

4. This workshop was food for thought for the research team and for the medical team who shared our initial research quest and in turn, now use our results in their day-to-day practices on the ward. In practice, no patient is now enrolled in a Phase I clinical trial without a previous encounter with the palliative care team. The unit’s management is also committed to promoting a better impression of palliative care among families by introducing it earlier in care trajectories, hopefully, regardless of prognosis.

5. DelVecchio Good (2001:407) also questions how this “biothechnological embrace” influences resource allocation. This matter is beyond the scope of our paper and will be furthered elsewhere as we tackled the issue with our respondents in a context of great disparity in pediatric and elderly medicine, namely in Québec.

6. We intentionally limit descriptors for the HCPs as the team is a small one and we wish to honor the confidentiality issue. Also, our coauthors being HCP themselves, any descriptors would reveal the provider’s identity.

7. They choose to remain on a disease directed path as long as their son is not officially relapsing from his cancer. Nevertheless, as mentioned earlier, the overall success rate in graft treatments rage between 50% and 60% and death stems from disease relapse but also, often, from treatment related morbidities such as infection(s), acute and chronic graft-versus-host (GVH) diseases and graft failures.

8. We refer to Kaufman’s (2015:6–7) Chain of Health Care Drivers (1-biomedical research industry, 2- Medicare and private insurance, 3- reimbursable therapy by insurance as standard of care, 4- standard therapies become ethically necessary and difficult to refuse) even though Quebec’s medical system is a public one, where medical insurance companies may offer better hospital conveniences and give access to private facilities but take no part in therapy management. The national health board in Quebec can acknowledge (or deny) the use of specific experimental drugs that are not part of the wide range of therapies and medication covered by the medical system. Physicians can also connect directly with experimental trials and access a new therapy or drug (sometimes without cost).

9. A mother we met with in a recent study on end of life experiences (https://www.findeviemtlpluriel.ca) repeatedly expressed that it had been important for her and her nine-year-old son to talk about the fact that he was dying after several rounds of treatments. She felt that he experienced a “good death”, a death he was prepared for. She also revealed that mothers she met with in a grief support group spoke of their feelings of loss because they hadn’t talked about death and dying with their dying son or daughter. These silenced issues left them ill at ease, and they believed it had made their grief more difficult to overcome.

Additional information

Funding

The authors received support from the METISS Research Team and the SHERPA Research Institute (Montreal, Canada) in 2016 and 2017-18, supporting fieldword and enabling transcription of the interviews.

Notes on contributors

Sylvie Fortin

Sylvie Fortin is a full professor in Medical Anthropology (and Pediatrics) at the Université de Montréal,. Her work questions the contemporary challenges of clinical practice today, namely diversity, religious pluralism, and gender issues in hospital and community health settings. Her recent work centers on the moral and normative challenges entailed by decision-making practices and withdrawal of active treatment at different life stages (from newborns to the elderly) for health care providers, patients, and their families (across localities) as well as “good death” and dying as experienced by minorities in Montreal.

Josiane Le Gall

Josiane Le Gall is an adjunct professor in the Anthropology Department of the Université de Montréal and a community-based investigator at the Centre Intégré Universitaire de santé et de services sociaux du Centre-Ouest-de-l’Île-de-Montréal. Her work centers on various dimensions of migration, transnational and mixed families, as well as religious pluralism in hospital and community health settings. She also co-conduct ethnographic studies on end of life, death, and grief as experienced by migrants in Montreal.

Antoine Payot

Antoine Payot is a pediatrician, neonatologist (PhD) and head of the clinical ethics unit at the Centre hospitalier universitaire (CHU) Sainte-Justine, He is also Associate Professor, Pediatrics Department and director of the Clinical Ethics Bureau and Advanced clinical ethics program, Université de Montréal. His research interests include communication ethics, complex decision-making processes, ethics and prenatal diagnostics as well as pediatric palliative care.

Michel Duval

Michel Duval is a pediatric hematologist-oncologist for the last 25 years, his clinical activity has been focused on hematopoietic stem cell transplantation at the Centre hospitalier universitaire (CHU) Sainte-Justine, with (unit) management responsibilities for more than 10 years. He is also a lab researcher with special interest in cancer immunotherapy. In the field of clinical ethics he co-authored an aid-to-decision-making booklet for families with children undergoing hematopoietic stem cell transplantation and takes part in research centered on end of life conflicts in paediatrics.