Eye-Opening Lessons on Trusting Nursing Facilities: Advocating for Comfort in End-of-Life Care

Published on August 28, 2023

Updated on December 3, 2023

As an experienced hospice visiting registered nurse, today offered me profound insights from two interconnected perspectives. The first highlights the blind trust we often place in facility nurses and doctors when caring for our loved ones. The second involves the challenges I encountered while advocating for proper end-of-life care for a patient with Alzheimer's.

The Scenario

On Tuesday, August 22nd, I initiated our end-of-life protocol for a patient with Alzheimer's, estimating less than two weeks left. This patient resided in a local facility. I consulted with the charge nurse, secured family consent, and composed a recommendation to enhance the patient's comfort using liquid morphine and lorazepam, both in dosage and frequency. On Wednesday, August 23rd, we received an email confirming the provider's approval of the recommendation via signed orders in PDF format. However, upon my visit, Nurse Melody mentioned not receiving the faxed orders, prompting me to resend them and confirm the correct number.

Obstacles and Challenges

Despite my efforts, Thursday, August 24th brought new hurdles. Nurse Stacey lacked any communication from Melody or others and struggled with redirection. This situation was further complicated by the outdated orders versus the urgently needed new ones for the dying patient. The provider who initially signed the orders claimed not to receive the fax and refused to issue a verbal order, despite the patient's evident and the acknowledgement of the signed order. An argument emerged over whether the recommendations should have been faxed to the facility, even though multiple confirmations were received.

Heartless Responses and Disregard

Returning to the patient's room with Nurse Stacey, I was shocked by her callous response to the comatose patient's condition. Despite the patient's heart rate of 118 beats per minute and 32 respirations per minute (Cheyne-Stokes pattern), Nurse Stacey argued against the patient's active dying status and dismissed concerns about morphine dosage and frequency. What struck me most was her statement, “he's always uncomfortable with care,” indicating both apathy towards patient suffering and a failure to communicate to hospice.

The next day, one of our hospice nurses visited the patient, only to discover the patient had passed away in their room, with the facility staff being unaware of the situation. The lingering query is: How much time had elapsed since the patient's passing? The concern arises due to the perceived neglect by the facility staff in delivering adequate care.

Conclusion: The Importance of Informed Choices

This experience underscores the crucial lesson that nursing facilities might not always offer the best care for terminally ill loved ones. While this narrative is a distressing example, countless others exist. If circumstances permit, providing care for your terminally ill loved one at home could offer a more compassionate and attentive solution.


Advocating for Your Terminally Ill Loved One in a Facility

Palliative Care Advocacy: Why Does It Matter?

Speaking Up for Your Loved One: How to Advocate for your Hospice Patient

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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