Sudden Death is painful. Whenever we encounter death unexpectedly in a loved one before we have time to prepare ourselves mentally in grief, we are left bereft, reenacting what could've been done to avert the event. The lack of forewarning and an ability to prepare can easily lead to post-mortem traumatic rumination. While we tend to associate sudden death as occurring with an accident or code in "everyday life," it can also happen in hospice. Wherever it manifests, though, it is always a tough pill to swallow, a rapid ending left unresolved due to some degree of unexpectedness.
There are different participants around the index patient who can be most impacted by this unexpectedness. These participants are the family/loved ones and providers. The shock of a rapid death hinges greatly on the level of awareness of these main participants around the event of mortality. Family-informed; family-uninformed; provider-uninformed; and provider-informed are arbitrary classifications I created to give an idea of these states of awareness.
Family-informed is when denial predominates and obscures the ability to see death. A family is given appropriate, timely education about the expectation of imminent demise, but they remain in varying degrees of denial which skews their ability to accurately perceive the circumstances of mortality. This controverting of the dying process has significant repercussions. It can cause an impasse in trying to get the family to a reconciled place prior to the patient's passing; it can prevent the patient from achieving a truly peaceful death as the family may block palliation or make burdensome decisions. And with regards to processing the shock of death, it can cause the family to incorrectly process the events and timing of dying, making them believe that an expected trajectory of dying is abnormal, abrupt, or traumatic. It is crucial with family-informed states to continue to work with the family compassionately but honestly in order to try to bring them as close to reality before the demise as possible. Otherwise the circumstances of death may be less peaceful for the patient or the family.
The second type, family-uninformed, is when the family is not provided any education or guidance on the oncoming demise. My friend's father's case in Germany was an illustration of this. After an outpatient procedure for atrial fibrillation with post-operative hypertensive urgency which was treated, he was released home and had a stroke. He was brought back into the hospital with brain swelling and a midline shift. He underwent an emergency craniotomy and was rapidly subsequently anticoagulated per the team decision. He had a hemorrhagic conversion with a subsequent comatose state. He required aggressive therapy for 72 hours of status epilepticus.
During this difficult time of intense medical management, no one spoke to the family openly about the situation. They were left on their own to try to figure out what was going on. Distraught, my friend turned to me for guidance and we carefully reviewed the clinical events and the likelihood of recovery. After we spoke at length, she understood the dire reality of the situation. She made the decision with her mother to transfer her father to hospice where he died just days later.
The lack of my friend's family being informed in this case likely stemmed from provider ignorance - and some avoidance. This provider-uniformed state was evident in grossly unrealistic statements about the potential of recovery of the patient. My friend's mother was advised to send her comatose husband to rehab; to bring him home with her alone to let him spend time recuperating in the context of family stimulation; to continue feeding him (by nasogastric tube) because otherwise he would starve. These misguided statements caused great pain to the family who saw clearly that the reality they were witnessing wasn't matching what they were being told.
The provider avoidance was seen in the dancing around the catastrophic nature of the case. It likely would have been much more cathartic, for both the providers and the family, to compassionately aver the true facts in the case: that the first stroke had been a significant event; that the second had set the course of demise; that the choice of anticoagulation so soon was unfortunate; that the providers truly felt sadness and remorse about the outcome. As nothing was said or explained or discussed, only the void of sudden death remained.
And finally there is provider-informed, where the advanced clinical status of the patient is clear but the anticipated trajectory may deviate. In my experience in hospice this has been due to a decisive cardiopulmonary occurrence, possibly in many cases a venous thromboembolic event. It is not easy to manage a sudden event in hospice, but we try our utmost for every case. With sudden decompensation or distress, we hustle hard to ensure that we are doing everything we can to try to get the patient comfortable quickly. Nonetheless, even for us hospice providers, individuals who have a great deal of experience with the different manifestations of dying, a rapid event that we are attempting to keep pace with, a sudden event that takes us even slightly by surprise, can leave us feeling shaken. No matter how knowledgeable we are, no one likes to be surprised about any aspect of death.
That is the real issue with all permutations of sudden death. There is surprise which converts itself into grief at the perception of not having had enough time to reckon with the situation. The rapidity of the events overtakes our perceived ability to keep pace and cope. The speed exceeds the capacity of our expectation, the level at which we pre-set our beliefs for how we think an outcome will occur. In life expectation determines everything, and sadly, when we haven't been made as aware as we should have been of how reality really functions, our expectations - and consequently our ability to be shocked - are skewed. It is only in stating the truth, that sudden death is a real and common-enough entity, that we open up the forum for discussion to help lessen its harsh impact.