Dying on ECMO – How do we care for the dying patient on mechanical support?

Author: Dr Elizabeth Winson
Peer reviewers: Dr David Anderson, A/Prof Chris Nickson

Everything ECMO 033

A 48-year-old man is placed on VA-ECMO for severe cardiogenic shock of unknown aetiology.  He is well supported.  After a period of gathering collateral history, it becomes clear that the previously undiagnosed cardiomyopathy is related to drug and alcohol use in the context of overwhelming mental illness and difficult social circumstances.  A heart transplant or long term mechanical circulatory support are not possible.  Despite generally preserved neurological and other organ function, the patient shows no cardiac recovery and will not survive off mechanical support but has no destination therapies available.

Q1. Why do patients die on ECMO?

Mechanisms of death in patients treated with ECMO include:

  • Failure of recovery and lack of destination (Ventricular Assist Device (VAD), transplant)
  • ECMO related complications
    • Neurological catastrophe
    • Overwhelming sepsis
    • Ischaemia – e.g. limb, mesenteric
    • Failure of support – e.g. air embolus, circuit breach, accidental decannulation
    • Haemorrhage
    • Inability to support – e.g. left ventricular distention, aortic regurgitation, and acute pulmonary oedema
  • Brain death
    • Neurological complications – e.g. haemorrhage, embolism (clot, air)
    • Failure of neurological recovery post initial insult – e.g. cardiac arrest, profound cardiogenic shock
    • Intercurrent illness – e.g. vasodilatory shock (sepsis, mesenteric ischaemia), haemorrhagic shock causing devastating neurological insult1

Q2. What challenges does dying on ECMO produce?

Dying on ECMO is particularly challenging, for these reasons:

  • Possibility of awake and aware patient
  • Failure of hoped for recovery
  • Explanation of rationale to not offer destination therapies
  • Timing and process of withdrawal of mechanical support
  • Declaring brain death2

Q3. What challenges does VA-ECMO pose to declaring brain death & how can it be performed?

A key step in the clinical determination of brain death is apnoea testing. However, apnoea testing is confounded by the presence of two competing circulations, the ECMO and the native heart/lungs.

  • These two circulations will meet at an unknown mixing point in the aorta, which can consequently influence which circulation is supplying the brain
  • Therefore, measurement of a PaCO2 >60mmHg at the radial artery (in accordance with ANZICS brain death testing guidelines) may not accurately reflect the PaCO2 in the brain
  • Testing of post oxygenator blood concurrently with systemic testing can ameliorate this by confirming that both circulations have a PaCO2 >60mmHg, ensuring that the cerebral circulation PaCO2 conforms to ANZICS brain death testing guidelines3

Q4. Why might destination therapies not be feasible?

Reasons include:

  • Underlying aetiology, especially the potential for ongoing morbidity or mortality despite transplant/ VAD
  • Comorbidities, especially other organ failures
  • Social situation and ability to achieve compliance 4

In Australia, a VAD is not considered a destination therapy, it is only a bridge to heart transplant (or recovery, in the case of temporary VADs). A permanent VAD is currently only offered to patients who are candidates for heart transplantation.

Q5. Should patients be awake at the end of their life on ECMO?

There is no easy answer to this question4. Factors to consider are:

  • Possibility of communicating with loved ones before death and being able to put one’s affairs in order
  • Potential for significant distress, and the need to spare unnecessary suffering
  • Controversy of the role of patient autonomy in circumstances stance as these, especially in the patients who are sedated5. Some argue that patients should have the opportunity and authority to direct the events of their withdrawal of life sustaining measures, however, others counter by arguing that there are no real choices to make and may suffer.

Patients on ECMO who are awake and asymptomatic should not be routinely sedated at the end of life, though that may be their preference and any symptoms should be appropriately palliated.

If a patient on ECMO is sedated and can be feasibly awakened, the correct path is often uncertain. After all, who decides? The path taken must address the patient’s needs as can be best determined.

Q6. How is mechanical support withdrawn?

  • Decannulation – often in theatre (especially on VA) and may therefore prevent family being present at time of death: uncommon unless some hope of ongoing survival
  • Cessation of pump function
  • Cessation of fresh gas flow (VV)1

Q7. How can patients and loved ones be counselled about death on ECMO?

This is complex and requires sensitivity. There is a balance between shared decision making and avoiding making a family feeling they are deciding to ‘stop’7

Particularly in the awake patient, exploration of patients’ goals and values, as well as what would constitute intolerable burdens, can allow progress towards a plan all can accept.2

Q8. Is there a role for palliative care in these situations?

Yes! Dying patients on ECMO can have all the symptoms and needs of any patient at the end of life.

However, pallative care teams are not often involved (even in the ventricular assist device population, after the acute inpatient phase). They can:

  • provide expertise in emotional support of patients, families and staff
  • help bring some distance having not been involved in the initial, curatively intended phase of care

Some argue palliative care should be involved early, including prior to initiation of mechanical support if time allows, to both manage expectations and build a strong relationship, should things not turn out as planned.7

Q9. Who is affected by these challenges?

We all are.

  • The patient
    • Being aware of the fact of impending death can be enormously distressing
    • Must be weighed against loss of agency from not being involved or even aware
    • Potential for physical suffering
  • Family
    • Conversations around timing of withdrawal of mechanical support and whether a patient would want to be aware are incredibly challenging and emotional for family members6
  • Health care providers
    • Moral distress
    • Close ties to the patient and their family after a potentially prolonged admission8

References

  1. Winson E, Brain MJ.  Extra corporeal membrane oxygenation: Anaesthetic perspectives.  Australasian Anaesthesia, 2017: 63-73.
  2. Jaramillo C, Braus N.  How should ECMO initiation and withdrawal decisions be shared?  AMA J Ethics. 2019;21(5): 387-393
  3. Ihle, J, Burell, A.  Confirmation of brain death of VA-ECMO should mandate simultaneous distal arterial and post oxygenator blood gas sampling.  Intensive Care Med 2019; 45, 1165-1166
  4. The Transplantation Society of Australia and New Zealand.  Clinical Guidelines for Organ Transplantation from Deceased Donors Version 1.3 – May 2019.  [Accessed 25 April 2020].   Available at URL: https://www.tsanz.com.au/TSANZ_Clinical_Guidelines_Version%201.3[6986].pdf
  5. Abrams DC, Prager K.  Ethical Dilemmas Encountered with the Use of Extracorporeal Membrane Oxygenation in Adults.  Chest.  2014; 145(4), 876-882
  6. Batchelor A, Jenal L, Kapadia F, Streat S, Whetstine L, Woodcock B. Ethics roundtable debate: should a sedated dying patient be wakened to say goodbye to family?Crit Care. 2003;7(5):335-338.
  7. Stephens AL, Bruce CR. Setting Expectations for ECMO: Improving Communication Between Clinical Teams and Decision Makers. Methodist Debakey Cardiovasc J. 2018;14(2):120–125
  8. Feinstein E, Rubins J, Rosielle D.  Extracorporeal Membrane Oxygenation in Adults.  Palliative Care Network of Winsconsin.  2017.  [Accessed 25 April 2020].  Available at URL: https://www.mypcnow.org/fast-fact/extracorporeal-membrane-oxygenation-in-adults
  9. Courtwright AM, Robinson EM, Feins K, Carr-Loveland J, Donahue V, Roy N et al.  Ethics Committee Consultation and Extracorporeal Membrane Oxygenation. Ann Am Thorac Soc.  2016; (13), 1553–1558

All case-based scenarios on INTENSIVE are fictional. They may include realistic non-identifiable clinical data and are derived from learning points taken from clinical practice. Clinical details are not those of any particular person; they are created to add educational value to the scenarios.

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