The D.E.A.T.H.L.Y end of life approach: How to save a death

Death is an integral part of life in the emergency department. However, end of life care remains incongruous with some of the better publicised aspects of emergency practice. As a specialty built on resuscitation, the death of a patient flies directly in the face of countless hours spent in advanced life support courses. Furthermore, the environmental and existential chaos that permeates a modern emergency department setting does little to support the conditions required for a ‘good death’ (1). 

Over the past decade a variety of measures have been introduced supporting the capability of emergency clinicians caring for patients approaching the last moments of life. Locally, the New South Wales Clinical Excellence Commissions ‘Last Days of Life Toolkit’ is an excellent example of a full featured package of clinical tools and decision-making aids that can be used to facilitate compassionate, evidence-based care in the last days of life (2). In many environments the wider multidisciplinary team including social workers and specialist end of life care nurse practitioners may be called upon to help patients, families and even treating emergency teams to navigate these sometimes-troubled waters. 

Despite the availability of increasingly accessible, high quality reference material, training for emergency clinicians in this area has generally struggled to break free of its reliance on supportive resources and multidisciplinary adjuncts. As an additional confounder, many patients who proceed to die in the emergency department do so after a period of active resuscitation or with relatively little accessible background information to aid the process of clinical decision making. In this circumstance the window to make a meaningful difference in a patient’s journey may be measured in minutes or hours as opposed to days or weeks. 

In similarly time critical patient presentations such as major trauma or cardiac arrest, systematic approaches have been developed and endorsed to ensure the expected standards of care are met across a wide range of clinical environments. In many cases these approaches are neatly sequences into mnemonic acronyms that can be memorised to aid in recall under fire. 

Despite the lack of a universally accepted system for approaching care at the end of life, several popular and user-friendly approaches have been described in the literature. For facilitating difficult conversations about end-of-life care goals, the GOOD (goals, options, opinion, and documentation) mnemonic serves as a reliable resource (3). Of even greater relevance when approaching our challenges in the emergency department is the CARES (comfort, airway, restlessness and delirium, emotional and spiritual support, self-care) mnemonic (4). Described by Bonnie Freeman in 2013, the CARES approach summarises many of the salient concepts in high quality end of life care into a package that is readily accessible for nursing staff in many clinical areas. 

Despite the immense utility of the CARES system, there are some situations in the context of a patient who is acutely dying that may require further nuance. Issues like family discussions, extubation management and organ donation are all important concepts that need to be considered in the emergency setting and as such, should be incorporated into end-of-life guidance. It is also important to consider that CARES was originally intended to build upon an established teaching base in the hospice environment which is relatively inaccessible in most typical emergency departments. 

Building of the excellent foundation of CARES and other similarly substantial pieces of existing work in this area, we have presented the DEATHLY acronym for the management of acute dying in the emergency setting. It is our hope that this may be a useful (if not thought provoking) approach to consider when emergency clinicians find themselves faced with the last moments of a patient’s life. In the same way that DRSABCD prepares a responder to protest against death, may DEATHLY help us to embrace it actively when an inevitable course becomes clear. And in a romantic sense, just as the combination of three legendary artefacts in Rowling’s Epic formed the ‘deathly hallows’, may the combination of these tools bring us closer to becoming ‘masters of death’. 

Distress

The relief of suffering is one of the most immediate and integral goals of end-of-life care in the emergency setting. For a significant proportion of people who report a clinically significant fear of dying, concern regarding the pain or suffering involved in the process is one of the most significant contributing factors (5). By ensuring we are equipped and able to address pain associated with dying we are better positioned to provide care that is person centred as well as communication that meaningfully addresses the concerns of loved ones sharing the experience. 

Essentially the relief of distress relates to the alleviation of harmful symptoms including pain, breathlessness, nausea and anxiety. There are several useful tools available online to guide the evidence-based management of common distressing symptoms associated with the dying process that it is well worth familiarising yourself with (see the CEC last days of life toolkit if you want to start somewhere). Importantly, don’t forget to think outside the standard paradigm of pain, nausea, agitation. For many patients breathlessness and work of breathing can be extremely uncomfortable – some solutions may include fans to provide increased airflow. Think outside the box, and please don’t forget how uncomfortable it is when you really need to pee.  

  • Pain
  • Nausea
  • Respiratory distress
  • Secretions  
  • Restlessness & agitation
    • Consider causes (pain, urinary retention etc.)

Empathy

The ability to empathise with patients from divergent walks of life is one of the hallmarks of high-quality clinical nursing care. Many situations faced by patients and those who love them in the emergency setting can be frightening – and it could be argued that dying is the most frightening prospect of all. In the complex dynamic of surrounding a person’s death, clinicians often find themselves sharing very intimate space with patients and those close to them. Standing beside a relative stranger on their final human endeavour is one of the most privileged components of our work. Take a moment to remember that each time approach a dying patient and strive to provide empowerment and dignity. Talk to the people involved, create a safe and supported space, and provide comfort wherever you can.

  • Talk to the patient about what is happening
  • Involve family / loved ones where appropriate
  • Ask about spiritual needs
  • Move them to the most appropriate environment
  • Comforts (lighting, temperature, oral care, toileting, clean gown and bedding)

Advocate / Avoid (unnecessary interventions)

The capacity of nurses to advocate for their patients can’t be overstated. In the setting of a patient who is acutely dying, this role become more important than ever. When a patient presents to emergency in the grip of a life-threatening condition, it is not uncommon for several medical teams to come and go, providing a consultancy service to determine the best clinical course based on an often necessarily brief assessment. While specialty teams rotate, the emergency nurse often remains a constant fixture spending a large amount of time with the patient during their resuscitation. As a result, the resuscitation nurse is often one of the first to identify terminal trends in vital signs or the absence of response to therapy. In this context, developing the ability to identify and escalate concerns that a patient is dying can allow for the formation of better patient centred treatment plans and importantly can help to avoid unnecessary treatments for non-reversible conditions which may cause undue pain or distress to the patient. 

Through our pivotal role in the treating team, emergency nurses are well positioned to ensure that the patient voice remains at the centre of the decision-making process. Sometimes this involves the literal support of a patient’s verbalised wishes; other times it involves the promotion of a family centred approach or advocacy for a compassionate treatment plan for a patient who cannot speak for themselves. 

Wherever a patient is identified to be in the last stages of life, care should be taken to avoid the administration of tests of interventions that will not provide benefit to the patient’s journey. In the phase of acute dying, time is a limited resource and any expenditure of the patient’s precious time on potentially low value interventions should be seriously considered. 

  • Empower patients / Support autonomy 
  • Remove unnecessary machines / lines etc. 
  • Avoid interruptions

Tubes

In the setting of an acute injury or illness that proceeds to end the life of a patient, the transition from resuscitative (curative) process to palliative approach can be confounded by a number of medical devices. Some patients may be intubated, have intravenous lines and other medical paraphernalia which may no longer be useful and may cause undue distress or discomfort. Where it is clinically suitable (and in consultation with the rest of the treating team), consider the potential benefit of removing those tubes and machines that are no longer needed. 

With regards to endotracheal extubation, ensure a considered plan for extubation is made and that close attention is paid to confounders like muscle relaxants, if in doubt seek support and advice from your critical care colleagues. Where it is anticipated that a patient may not survive long after extubation, discuss suitable options with any of the patient’s important people who may wish remain present or nearby while the procedure is attended.  Ensure Organ donation is always considered prior to extubating patients in the emergency department

With regards to intravenous lines, remember that while subcutaneous dosing of analgesia and sedation is preferable in some contexts a subcutaneous dosing regime may take time to reach a therapeutic level (particularly if using dilute subcutaneous infusions). For patients in significant discomfort, intravenous dosing may be transiently required while a subcutaneous regime is established. And in some cases where the dying process progresses quickly, the intravenous route may remain the most suitable avenue for pharmacological support through the entire episode of care. 

  • Extubation management
  • Consider utility of other tubes (IDC for retention, NGT for obstruction etc.)
  • Remove IVCs > Place sub cut line – consider as a continuum in the acutely dying patient i.e. the duration of SC therapy to onset

Hard, Helpful Conversations 

As mentioned, often the most difficult part of delivering end of life care is identifying that a patient is actually dying. An important part of the transition between resuscitative and palliative care is the communication and navigating the change with the patient and those who care for them. Tools such as the GOOD acronym (discussed above) are available to help guide clinicians through these conversations. Always ensure that enquiries are made regarding previous advance care planning or expressed wishes around end of life care, and that copies of these plans are made available as soon as possible, these documents should be translated onto a hospital recognised Resuscitation plan.  In many settings emergency teams may have access to other supportive member of the multidisciplinary team who are able to provide valuable support during these difficult discussions. 

Outside of the immediate conversations surrounding the trajectory of care, there are a handful of other hard, but very helpful conversations that should be considered and (where appropriate) engaged with proactively. In many cases of death in the emergency department, there may exist a window for the consideration of organ and or tissue donation. This is an extremely complex and often delicate area that requires specialist support right from the initial point of conversation. As such, the best advice for most emergency clinicians is to become familiar with your local organ donation systems and triggers. Where it is identified that a patient may be a suitable candidate for donation, this should be escalated to the relevant stakeholders who will often be able to assist in facilitating a supported conversation with the patients’ kin. 

Once these critical conversations have been considered, it is important to pay attention to the communications that will be required to handle the logistics of a patient’s admission. Discussing place of care for end of life is a fundamental aspect of respecting patient wishes.  Where the opportunity exists to have a patient admitted to a more comfortable environment than the emergency department, this will generally require communication with admitting teams, bed managers and potentially a handful of others. Proactively addressing these steps can allow a patient and their loved one’s precious time to settle into an inpatient setting rather than contending with the contextual chaos of the ED.   It may be that return to an aged care facility, returning home with support, consideration of hospice or a different facility may be the most appropriate place for end of life care. 

  • Assess for organ donation triggers
  • Consider appropriateness of referral to donation coordinator
  • Appropriate referrals (EOL NP, SW, ALO, Pastoral Care etc.) 
  • Identify an admitting team and communicate with them

Literature / last days of life toolkit

While a mnemonic approach for systematising acute end of life care has promise through its relative portability and role as a cognitive aid, situations where expectant patients die over the course of minutes in the emergency department remain in the minority. More common is the situation where a patient’s trajectory towards dying is recognised, a plan is instated, and the patient progresses towards death over hours or even days. In these situations, there is ample time to move beyond the scope of a rapidly deployable acronym into the realm of a more robust end of life framework that considers local guidelines and system conventions. In your local system it is likely some form of end-of-life pathway exists to guide you in the more nuanced practice of delivering and monitoring short to intermediate term end of life care – it is highly recommended to seek this out. If you don’t have such a pathway, I would highly recommend the tools advocated in my department – the NSW Clinical Excellence Commission’s ‘Last Days of Life Toolkit’. This is an extensive suite of tools and guidelines that make the systematic deployment of these interventions a relative breeze beyond the immediate hyperacute phase. 

Yourself

A massive strength of the CARES approach is the clear acknowledgement of the price we pay for the privilege of caring for patients at the end of their lives. By sharing in the toughest moments of the lives of strangers, we are at risk of inadvertently being marked by the experience. For emergency clinicians who participate in these moments more than many, it is essential to consider the impact of these experiences on yourself as an individual. Not only for the sake of your mental health and general wellbeing, but also to prevent compassion fatigue from limiting the level of care and support you can provide to those in need around you. 

While it is beyond the scope of this post to condense the enormous amount of evidence on post event debriefing or self-care, it is important simply to note that different approaches will likely work for different people. Where organisations support structures exist in your department (like the acute incident response debriefing approach), these can be invaluable in helping you to process and reflect on your experiences. Outside of the clinical environment, any investment in fortifying your resilience or wellbeing is likely to pay big dividends in supporting your ability to turn up for patients in their time of need.

  • Reflection
  • Self-care 
  • Debrief 

Summary 

The DEATHLY approach may be a beneficial construct for clinicians caring for acutely dying patients in the emergency department setting. It serves as a cognitive aid prompting consideration of many routinely cited practice points in the care of the dying person and works symbiotically with existing management frameworks like the CEC last days of life toolkit. Importantly, the use of a mnemonic acronym to guide the ‘resuscitation’ of a patient’s death holds great promise due to the relative familiarity of this approach for the emergency clinicians providing this care in the clinical setting. 

Special thanks to Tye Parker, Jeanette Lacey and Dr Sam McMenamin for their contributions.

References 

  1. Field MJ, Cassel CK. (1998). Approaching death: improving care at the end of life. New England Journal of Medicine. 339:274–5.
  2. Clinical Excellence Commission. Last Days of Life Toolkit. Retrieved from:  https://www.cec.health.nsw.gov.au/improve-quality/quality-improvement-toolkits/last-days-of-life
  3. Hallenbeck, J. L. (2003). The GOOD Acronym: ‘Its Good to Incorporate Patient and Family Preferences into Decision Making.’ Palliative Care Perspectives. Retrieved from: http://www.mywhatever.com/cifwriter/content/70/4977.html
  4. Freeman, B. (2013). CARES – An acronym organised tool for the care of the dying. Journal of Hospice & Palliative Nursing. 15(3). Retrieved from: https://journals.lww.com/jhpn/fulltext/2013/05000/cares__an_acronym_organized_tool_for_the_care_of.5.aspx
  5. Lewis, R. (2018). Facts to calm your fear of death and dying. Psychology Today. Retrieved from: https://www.psychologytoday.com/au/blog/finding-purpose/201811/facts-calm-your-fear-death-and-dying

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