It is a common general surgery consult. Please come see the patient in resusciation bay 2 for a GI bleed. It sounded way less interesting than the 2 patients with pneumoperitoneum that would definitely need an operation until the story unfolded. Except we didn’t need the story. We saw her CT and knew this was going to be bad. We had already called her gyn onc who said hospice; there was nothing else to do. The vascular surgeon not only said no, but heck no. The interventional radiologist said he could try.
Dora was in her 60s and had stage 4 cervical cancer that she had been battling for years. She had met with her gynecologic oncologist 2 weeks prior. At that time, he recommended hospice; she elected for a port placement a week later with the plan to begin palliative chemotherapy the upcoming week. She told me she began having bright red blood per rectum 5 days prior and that morning had passed a large amount of blood such that she became syncopal and slid off the toilet. She presented with a hemoglobin of 6.5, heart rate 128 and systolic blood pressure of 96. Her second unit was being transfused as I walked in.
I learned Dora was an Army veteran and lived with her daughter Dani and
granddaughter. We quickly established the most important thing in her life was her family, some of whom were out of state. Her final wish - “the last face I want to see is my granddaughter’s.” She and her daughter thought she would be starting palliative chemo that week. After asking for permission to share some difficult news, I explained that the tumor they knew about by the big blood vessels and intestines had eaten away the aorta and intestines such that she was bleeding from the aorta into her intestines. There would be no chemotherapy. She was not going to die like everyone had predicted – slowly from her cervical cancer. No, she was going to bleed to death. Given her vital signs, without continuous transfusion she would likely die within hours. The other possibility was to attempt to place a stent within the aorta to cover up the hole where it was bleeding and thus, stop the bleeding. It was not without risks; she could die during the procedure and not achieve her goal of seeing her granddaughter’s face. Without a doubt, the stent would get infected, she would bleed again at which point there was no treatment, but this “band aid” on a leaky pipe could buy her some time for family to travel to be with her. I was honest. I didn’t know how much time. She wanted to go for it. We established her code status would be DNR and should she make it through the procedure, her goal would be to go home with hospice.
Unexpected deaths in palliative care and hospice are described in the literature. However, due to the definition of unexpected, the incidence is not well defined but ranges from 0.5% to 42%.1,2 Given the timing component, unexpected is dependent on the clinician’s prognostication and subjective. Unexpected can mean sooner rather than later to some; for other patients, they may be like Dora, and have an unexpected complication from their diagnosis or die of a completely unrelated etiology. Surprise deaths can come with usual warning clinical signs of decreased responsiveness and death rattle as well as a PPS ≤20% or RASS ≤-2.3,4 Other unexpected deaths are related to the underlying terminal illness, such as delirium, pneumonia, peritonitis, metabolic acidosis, and upper gastrointestinal bleeding.4 Interestingly, in a case series of autopsy findings, a duodenal-IVC fistula was discovered.5
Why does sudden death matter? These patients and their loved ones know they have a terminal illness, but unexpected deaths do not follow the traditional disease trajectory. For the patients, they may not have expressed a code status, and thus may suffer CPR.6,7 Their final legacy letters may not be written, their wills not signed, and all the last minute things to do not completed because they knew how this would end. For those left behind, they had envisioned an expected course. The death location, persons involved, and rituals had all been planned. Now, final goodbyes may not be said. These dreams shattered just as traumatic as the diagnosis and death notification. Unexpected deaths can lead to complicated grief and is also associated with higher rates of depression, panic disorder, substance use, and mortality in those grieving.8-11 As clinicians, we offer treatment and interventions based on how long we think the patient has to live and whether the benefits outweigh the risks.
What can we do as clinicians to decrease the incidence of unexpected death? We know we are optimistically positive in our prognostication. Even when quoting prognostication, patients and their loved ones hope for the best and think, we are in the 1% that will survive. Communicating obvious signs of deterioration may help patients and their loved ones be more realistic about where they are in the disease process. Ensuring advance care planning is undertaken early in the disease process, normalizing it, and explaining it can be revisited may prevent unnecessary interventions. As decisions need to be made, outlining them in best-case, worst-case scenarios can lay out the seriousness of interventions. Remember, we do not have to offer all interventions for we bring the medical knowledge in shared decision making. Finally, early bereavement interventions and monitoring for complicated grief can help support the loved ones left behind.
Dora did successfully have her aortic stent placed and was enrolled in hospice. She returned home the following day – her new goal after the procedure. Her sister was able to arrive and say goodbye. Sadly, Dora died the following day at home with her wish being fulfilled – the final face she saw was her granddaughter’s.
*All names have been changed to protect patient identity.
Hui D. Unexpected death in palliative care: what to expect when you are not expecting. Curr Opin Support Palliat Care. 2015;9:369-374.
2. Ito S, Morita T, Uneno Y, et al. Incidence and associated factors of sudden
unexpected death in advanced cancer patients: a multicenter prospective cohort study. Cancer Med. 2021;10;4939-4947.
3. Hui D, Dos Santos R, Chisholm G, et al. Clinical signs of impending death in cancer patients. Oncologist. 2014;19:681-687.
4. Hui D, Dos Santos R, Reddy S, et al. Acute symptomatic complications among patients with advanced cancer admitted to acute palliative care units: a
prospective observational study. Palliat Med. 2015;29:826-833.
5. Chinen K, Kurosumi M, Ohkura Y, et al. Sudden unexpected death in patients & with malignancy: a clinicopathologic study of 28 autopsy cases. Pathol Res Pract. 2006;202:869-875.
6. Goodlin SJ, Zhong Z, Lynn J, et al. Factors associated with use of
cardiopulmonary resuscitation in seriously ill hospitalized adults. JAMA.
1999;282:2333-2339.
7. Toscani F, Di Giulio P, Brunelli C, et al. How people die in hospital general
wards: a descriptive study. J Pain Symptom Manage. 2005;30:33-40.
8. Lobb EA, Kristjanson LJ, Aoun SM, et al. Predictors of complicated grief: a
systematic review of empirical studies. Death Stud. 2010;34:673-698.
9. Burton AM, Haley WE, Small BJ. Bereavement after caregiving or unexpected death: effects on elderly spouses. Aging Ment Health. 2006;10:319-326.
10. Keyes KM, Pratt C, Galea S, et al. The burden of loss: unexpected death of a loved one and psychiatric disorders across the life course in a national study. Am J Psychiatry. 2014;171:864-871.
11. Shah SM, Carey IM, Harris T, et al. The effect of unexpected bereavement on mortality in older couples. Am J Public Health. 2013;103:1140-1145.
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