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 with 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 This situation was further complicated by the outdated orders versus the urgently needed new ones for the dying patient.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 discomfort and the acknowledgment 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 unconscious 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 toward patient suffering and a failure to communicate discomfort 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 has 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.

Resources

Advocating for Your Terminally Ill Loved One in a Facility

Palliative Care Advocacy: Why Does It Matter?

The National Academy of Elder Law Attorneys (NAELA) is dedicated to improving the quality of legal services provided to older adults and people with disabilities

Articles on Advance Directives

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

Find the Long-Term Care Ombudsman Program in Your State

Patients Voices Matter Foundation – Empowering Patients, Transforming Lives

Independent Patient Advocate – Independent, non-clinical patient advocacy nationwide. Health Navigation, SSDI Application & Appeals, and Whole Health Advocacy. 100% remote. No insurance accepted.

Natural Death With Dignity: Protecting Your Right To Refuse Medical Treatment

Beyond the Living Will: Creating Effective Advance Directives

Make Your Own Medical & Financial Power of Attorney: A Step-By-Step Guide to Making a Power of Attorney

Last things first, just in case… The Practical Guide to Living Wills and Durable Powers of Attorney for Health Care

Death and Dying: A Good Exit Plan

Free Daily Symptom Tracker

Free Caregiver and Dementia Training Videos

CaringInfo – Caregiver support and much more!

The Hospice Care Plan (guide) and The Hospice Care Plan (video series)

Understanding Palliative Care: A Guide to Common Questions and Answers

Bridging the Gap: Palliative Care’s Role in Supporting Rare Disease Patients

Comprehensive Guide to Financial Assistance for Hospice and Palliative Care Patients

Surviving Caregiving with Dignity, Love, and Kindness

Caregivers.com | Simplifying the Search for In-Home Care

Geri-Gadgets – Washable, sensory tools that calm, focus, and connect—at any age, in any setting

Healing Through Grief and Loss: A Christian Journey of Integration and Recovery

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Caregiver Support Book Series

VSED Support: What Friends and Family Need to Know

My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It’s Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I’ve Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

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