Hard Choices at the End of Life

This year, I became the Medical Director of a small hospice focused on caring for those living in small assisted living communities (ALs).  Because we are a small team working In family-like home settings, we chose to open hospice cases with my colleague or I present (physically or virtually) to assess the case with our RN and the patient’s family (present, or virtually available).  This structure has not only improved the clinical assessment of the health history, but also has provided a quicker understanding of the patient’s personal preferences and goals of care.  In addition, the bidirectional communication with patients and DPOA builds trust for adjusting the care plan so we provide care that matters to this patient.

Last Spring, we admitted a frail male in his 90s with advanced dementia for rapid decline due to aspiration pneumonia.  This episode was preceded by a hospitalization for aspiration pneumonia with subsequent palliative care in this board and care by another hospice.  When he stabilized, he went off the hospice benefit until this new event.  At our SOC (start of care), I noticed that this resident had been on Seroquel 50 mg bid and Haldol 1 mg bid throughout his time at the facility, but the staff was not aware of any behavioral problems.   The prior hospice only provided a diagnosis of dementia not otherwise specified.  In fact, the family volunteered a long standing history of Lewy Body dementia with problem behaviors in the past, but none at this facility.  They were quite adamant that this patient’s diet should not be downgraded to more than a mechanical soft diet, since he still enjoyed eating and didn’t like a pureed, nectar thick liquids (NTL) diet.  They agreed to taper off the antipsychotics, since they were possibly not necessary and likely were contributing to this resident’s dysphagia.  

Over time, we were able to taper off the Haldol, but not the Seroquel, which did relieve moaning and crying out.  The patient stabilized on a mechanical soft, thin liquid diet and went off hospice.  Though our staff didn’t notice improvement in his dysphagia or staff interactions, the daughter, who has worked in health care, thanked us for giving them back their father.  They could now take him out in a wheelchair to the park and see him smile and respond to them.  

He remained stable until the middle of last month, when he had a small left hemispheric cerebrovascular accident (CVA) manifested by a right facial droop and worsening of his chronic dysphagia.  The facial droop would resolve, but recurred on several occasions over the ensuing days.  He was seen by my colleague who noted rapid decline with recurrent aspiration pneumonia likely and death anticipated in days to weeks.  When I returned, this patient was actively dying and we were able to control his terminal distress with intensified sublingual morphine and scheduled hyoscyamine for secretions.   He died with his family and our RN case manager at the bedside.  

I subsequently reviewed his chart to create a death note and complete his death certificate worksheet.  I discovered that he had inadvertently been exposed to COVID by a family member and had subsequently tested + for COVID.   This development was noted at the SOC and raised the question whether his CVA and death may have been triggered by COVID.  I agreed with the decision to not aggressively manage the COVID component of his terminal illness, but needed to choose whether to contact the family and advise them of this potential factor in their father’s decline.  I discussed this with my colleague and decided to not share this possibility with them, since the death had been expected, was well managed, and closure had occurred.  Adding unanswerable speculation to the dying process would only serve to please the statisticians while risking significant distress to the family member who inadvertently exposed this patient.  This decision had clinical consequences; I chose not to put COVID on the death certificate (a public document) as a contributory cause of death.  Of course, we did not know to what extent, if any, the positive COVID test had actual clinical impact.  This scenario raised a number of ethical questions, but our hospice team and I were comfortable with this course of action.  

If any of our readers have had similar experiences they’d like to share, please contact the WAVE.  If not, what would you have done in this scenario?

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