end of life care

see also:

• ethical issues in emergency medicine
• NSW College of Emergency Nursing - End of Life guidelines (pdf)
• NSW Govt - End of Life Care and decision making guidelines
• death and the potentially dead
• Safer Care Victoria - Checklist for care plan for preparing patient to die at home
• Victorian Advanced Care Directives forms
• A Good Death - a NZ film about end of life care and advance care planning
• The Age 2014: Looking for a way to go
• louisvillelectures.org: DNR orders - a video looking at the intricacies
• http://www.theage.com.au/national/health/elderly-subjected-to-unnecessary-invasive-endoflife-treatment-review-shows-20160627-gpsn6p.html

• end of life care is a critical aspect for an ED which must be approached with sensitivity, decisiveness and compassion.
• end of life care in this article refers more to the acute situation found in the ED where it is likely the patient will die within a matter of hours or days. See elsewhere for palliative care of patients with terminal illnesses requiring prolonged care such as provided by hospices.
• it is critical to understand that resuscitative procedures such as intubation should NOT be attempted if an ICU department would not consider such a patient for admission, irrespective of the wishes of the family - this would NOT be in the interest of the patient whose suffering would be prolonged, and they would almost certainly never regain consciousness post-extubation - thereby preventing family an opportunity to partake in a final parting while the patient can still communicate.
• when a potentially reversible problem is suspected, the ratio of the risk and discomfort of diagnostic and therapeutic interventions needs to be considered in light of the patients projected lifespan, the probability of the therapy being successful and available, and the values, needs and wishes of the patient.
• nursing home patients who are not applicable for intubation should have a standing NFR order (advanced care directive).
• if they deteriorate with a condition that is not reversible, then, ideally, they should receive their end of life care at the nursing home where they and their family are familiar with both environment and staff. To be transferred unnecessarily to an ED to die is an added stress to all concerned and usually fails both the patient and their family at this important time.
• please see the above documents for more details and legal aspects including patient rights to receive or refuse treatments, advanced directives, the doctor's right to with-hold or withdraw treatment which are not in the patient's interests, and the right to give pain killers and sedatives with the prime aim to reduce a patient's discomfort despite the knowledge that doing so may hasten an inevitable death.

• it can be difficult at times to decide when resuscitation is futile
• at times, short term resuscitation even when clinically futile, may still have a role if its benefits outweigh the harm, for example:
  • allowing time for family to attend for end of life
  • allowing time for much needed conversation before life ceases
• the decision must be individualised based not only upon known futility of the benefits of proposed resuscitation (one should ask - will the intervention work?) but also upon the harm this may impose upon the patient and family, in particular, in preventing good clinical management which would allow a “good death”, and instead causing prolonged pain or suffering, preventing family communication (eg. by intubation), and creating false hopes.
• one will not be doing the patient or family any favors if one embarks on intubation and critical care pathway in a patient with poor quality of life and a largely irreversible condition such as end stage COPD or cardiac failure, for them to gradually die from multi-system failure whilst mechanically ventilated over the following weeks in an intensive care environment.

• thoracotomy in the ED
• resuscitation of patients with prolonged asystole
• CPR for patients who have arrested following blunt trauma

• early decision, preferably by a senior doctor, that the current event will very likely be a terminal event and that resuscitative attempts would not be in the interests of the patient and would only prolong suffering before an inevitable death.
• early discussion with family, and patient if possible
• document “Not For Resuscitation (NFR) order” to ensure staff are empowered to provide the best end of life care possible
  • this should be individualised and document which therapies are appropriate to continue and which are not appropriate (eg. no CPR, no intubation)
• aim to have patient transferred to an appropriate ward bed as soon as possible - the ED is NOT the place for planned births nor for end of life care - the patient and family deserves peace and quiet, and the environment and privacy to allow the final parting and grieving with dignity.
• ideally, the patient should be admitted to a palliative care bed or returned to the familiar environment of their nursing home, but if neither of these are possible, then a general medical ward admission is a reasonable compromise.
• patient and family should be offered access to pastoral care such as a priest or similar spiritual leader, for last rites, etc.

• s/cutaneous line should be inserted and any iv line removed
• s/c fentanyl 25-50mcg prn for pain, agitation or dyspnoea
• s/c midazolam 2.5mg prn for agitation or dyspnoea
• s/c haloperidol 0.5mg prn for vomiting or agitation
• s/c atropine 0.6mg to control excess retained secretions
• glycerine supps
• bisacodyl supps
• s/c normal saline at a rate of 1L/24hrs for comfort to avoid development of dehydration
  • consider adding:
    • fentanyl 100mcg over 24 hrs (or morphine 10mg over 24hrs if not in renal failure)
    • midazolam 5mg over 24hrs if restless
    • haloperidol 1mg over 24hrs if agitated
• NB. higher doses may be required if patient is already on opiates
• NB. lower doses may be adequate in the frail elderly or those with renal failure

• pain
• breathing problems
• agitation
• nausea

• anger
• family conflict
• difficult communication
• cultural issues
• denial
• financial issues / accommodation
• caregiver fatigue

• Unresolved Pain scores ≥7
• Unresolved Breathing problems ≥5 despite routine management
• Unresolved Agitation ≥5 despite routine management
• Unresolved Vomiting ≥5 despite routine management
• Catastrophic events, such as acute airway obstruction or torrential bleeding
• Unresolved Family distress
• Any other unresolved symptom for which you require support to initiate management

• Pain score ≥5 despite repositioning, and administration of medication
• Breathing problems ≥5 despite routine management
• Agitation ≥5 despite routine management
• Nausea ≥5 despite routine management
• Vomiting ≥5 despite routine management
• Family distress score ≥2 despite routine management
• New symptoms perceived to be distressing to patient and or family

• consider:
  • Pastoral care
  • Social worker
  • Volunteer services
  • Pamphlets for community services (Mercy Grief Services)
  • Letters of condolences to grieving families

When making a death notification in the ED, consider the following mnemonic:

• A
  • Assemble the team (safety so you are not alone, plus allows one to stay if you do have to leave - although ensuring you do not need to leave prematurely is a priority)
  • Ascertain who is in the room (open ended questions to ensure you have the correct family)
  • Announce team members to the family
• S
  • Sit down - conveys far greater empathy and preparedness to stay longer
  • Say the patient’s name - critical for empathetic communication
  • Speak plainly - no euphemisms
• H
  • History - What does the family know thus far? PMH/PSH? Primary Care Provider?
• E
  • Explain events succinctly and discretely
  • Express death clearly (i.e., “I’m sorry. Mr. Jones died.”) Euphemisms for death are to be avoided (e.g., “passed on”)
• S
  • Stay through the initial grief reaction
  • Show Sympathy but avoid talking in these minutes
  • Steer family to resources (e.g., funeral home, chaplain)

Another model:

• Ask
  • what do you know? what would you like to know? is anybody else who should be here?
• Tell
  • explain simply and empathetically
• Ask
  • ask if they understand, consider asking how they feel