In partnership with the European Association for Palliative Care (EAPC) Neurology Reference Group, we present a new weekly series where practitioners and researchers share their experiences in supporting people affected by neurological disease.
Today’s guest writers are Rachel Rutz Voumard, Ralf J Jox and Patrik Michel (Switzerland), Claire J Creutzfeldt (USA) and Gian Domenico Borasio (Switzerland).
Every year, 5.5 million people die from stroke worldwide, while another five million stroke survivors face a wide range of disabilities – physical and mental – significantly impacting their quality of life. The public health consequences of stroke are also seen in closely related acute conditions like traumatic brain injury and hypoxic-ischemic encephalopathy after cardiac arrest, which are defined together as severe acute brain injury (SABI). Patient and families after SABI can benefit from an early collaboration between intensive care medicine, neurology and palliative care to help them navigate highly consequential treatment decisions and receive goal-concordant care.
Goal-concordant care aims at aligning treatment decisions with the patient’s personal goals and preferences. This is particularly challenging in a SABI setting for three reasons:1
- This condition occurs unexpectedly and threatens not only the patient’s life but also their quality of life and functional and cognitive independence.2
- Patients lack decisional capacity, forcing next-of-kin and clinicians to make high-stakes decisions on their behalf, notably regarding withholding or withdrawing of life-sustaining treatment.3 These decisions pose a particular ethical challenge in the older population.
- Uncertainty affects many levels: prognosis regarding the level of functional and cognitive recovery; the patient’s presumed wishes; and their capability to adapt to a new normality.4
Conflicting tendencies can be observed in acute neurological situations: on one hand, families and clinicians tend to err on the side of sustaining life since the decision to prolong life is reversible while the opposite decision is not. On the other hand, they are afraid to miss out on the opportunity to let the patient die and thus may become partially responsible for a protracted state of severe disability that the patient would not have wanted.5 Family members and clinicians involved in these decisions frequently develop psychological distress.
So how might clinicians adequately achieve the aim of goal-concordant care despite these decisional dilemmas and ambiguous feelings?
A first option is to offer a time-limited trial, not only in the intensive care unit but in the acute and post-acute setting. This means preparing the family and the clinicians to reassess the care if the goals are not achievable after a prespecified number of weeks or months.
The second option is to articulate a prognosis range that helps families and clinicians to estimate the trajectory of care. Validated prognostic scores have been shown to predict long-term outcome better than clinicians, but they are rarely used in practice, leading to prognostic inaccuracy due to clinicians’ cognitive biases.6
A third key is to clearly express the doubts and discuss their impact on decision-making within the care team. To this end, grand rounds in the neurological ward or the intensive care unit could involve a palliative care and/or ethics consultant to specifically address concerns regarding goal-concordant care and the decision-making process. Such a collaboration would help to formulate an interdisciplinary and interprofessional consensus and coordinate the goals of care.
When the entire team learns to openly deal with so many fears, the burden of the decision may be reduced, and the patient’s presumed wishes better honoured. Because:
“Nothing is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” (Marie Curie).
- Halpern SD. Goal-Concordant Care – Searching for the Holy Grail. NEJM, 2019.
- C Creutzfeldt CJ, Kluger B, Holloway RG. Neuropalliative care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease. Ed Springer, 2018.
- Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med, 2011.
- Rutz Voumard R, Kiker WA, Dugger KM, and al. Adapting to a New Normal after Severe Acute Brain Injury: an Observational Cohort Using a Sequential Explanatory Design, Crit Care Med, 2020.
- Thomas I. Cochrane. Unnecessary Time Pressure in Refusal of Life-Sustaining Therapies: Fear of Missing the Opportunity to Die, The American Journal of Bioethics, 2009.
- Creutzfeldt CJ, Holloway RG. Treatment decisions for a future self: Ethical obligations to guide truly informed choices. JAMA, 2020.
- Follow the Palliative Care and Neurology series on the EAPC blog. Next week our guest writers are Andrea Gasper, Gülay Ateş, Birgit Jaspers, Martina Kern and Lukas Radbruch from Bonn, Germany.
- EAPC Neurology Reference Group (includes links to several useful publications and projects).
- Neurological Palliative Care: FREE webinar presented by the EAPC Neurology Reference Group, Thursday 27 January 15.00 CET. Register at https://bit.ly/3AaIDTU
More about the authors…
Rachel Rutz Voumard is Senior Fellow and post-doctoral researcher in the Palliative and Supportive Care Service and in the Clinical Ethics Unit, Institute of Humanities in Medicine, Lausanne University Hospital, Switzerland. Patrik Michel is Associate Professor in the Stroke Center, Neurology Service, Lausanne University Hospital, Switzerland. Claire J Creutzfeld is Associate Professor in the Department of Neurology, Harborview Medical Center, University of Washington, Seattle, USA. Ralf J Jox is Chair of Geriatric Palliative Care, Palliative and Supportive Care Service, and Head of the Clinical Ethics Unit, Institute of Humanities in Medicine, Lausanne University Hospital, Switzerland. Gian Domenico Borasio is Professor and Head of the Palliative and Supportive Care Service, Lausanne University Hospital, Switzerland.
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