Dying badly despite all my efforts

A woman does everything right to smooth her mother's transition to death, but the health care system failed her.
A woman does everything right to smooth her mother's transition to death, but the health care system failed her. (kazoka30 / Getty Images/iStockphoto)

I’m a palliative care nurse practitioner so you would think that my mother would have had a good end-of-life experience, but she didn’t.

She had done everything she could to prepare for a “good” death.” She was aware of her health situation and willing to discuss it with her family and health care providers. I lived nearby, was her health care power of attorney, and we talked regularly about her wishes. She had a living will and a MOLST (Medical Orders for Life-Sustaining Treatment) form. And she chose to live in a continuing care retirement community outside of Baltimore, a place with varying levels of care.


She lived there for more than 16 years in its independent living section. But in her 91st year, her doctor recommended hospice. The care they provided was wonderful. My mother was comfortable, and we felt supported.

The first challenge came when the alarm sounded on my mother’s oxygen concentrator. I called the equipment company, and they agreed to send a replacement. Hours went by. Calling them again, the answering service told me if this was a medical emergency I should call 911. Then the on-call person called back to say my mother wasn’t one of their patients. Minutes later, the delivery driver called to say he had arrived but couldn’t find the apartment.


Dr. Madeline Leong, a playwright and palliative care doctor at Johns Hopkins Hospital, wrote "Life Support" to address end-of-life decisions; play will be performed at Hopkins facilities.

But the real trials came when we moved my mother to the nursing facility within the continuing care retirement community (CCRC). This was when we discovered that the CCRC had no process to move her there, even though it was only a few hundred yards away. I had to explain that taking her in a wheelchair through the public areas was not going to work. The facility asserted that my mother’s hospice should arrange — and pay — for the ambulance, which the hospice rightly refused. After multiple phone calls, the CCRC ordered transport.

When my mother finally arrived, the problems with care coordination began. It took an hour to be seen by a nurse. The nurse said she had to check my mother’s chart, which was puzzling because my mother didn’t have one, having not come from a medical facility. However, without such a chart, the staff had no idea who my mother was or why she was there, even though her medical records from the previous 16 years were in the adjoining clinic. When they finally examined her, they tore her fragile skin, which bled. Finally, the charge nurse asked me for the details on my mother’s terminal diagnosis, medical problems, medications and even which hospice was providing her care. I could provide that, but what about a family who couldn’t?

The charge nurse agreed that my mother urgently needed medication for her breathing. Her physician had ordered it, but it hadn’t arrived, and as the hours went by her breathing became rapid and labored. The pharmacy sent an emergency delivery of a laxative, but not the breathing medication. That finally arrived eight hours after her admission and took a while to work.

My own family was lucky enough to benefit from the support of a palliative care nurse when my father faced lung cancer. She got his pain and nausea controlled and taught us how to care for him at home. She inspired me to pursue my own career as a palliative care nurse practitioner. But there are not enough of us; right now there is only one palliative medicine physician for every 13,000 patients with serious illness and the research supporting our work is lacking

The next day an aide came in to note that “he seemed to be sleeping” and left. Then the nurse tried to place some medication ordered for my mother’s mouth in her eyes instead. That evening, the manager came by, noted our exhaustion, and sent us home saying someone would check on my mother every hour that night.

Early the next morning a tearful nurse called to tell me she hadn’t given my mother any of her ordered medications overnight because she hadn’t known about them. We rushed to the nursing facility where the staff was apologetic. Not long after, my mother died.

There’s so much about this that’s hard to understand but little that’s unusual. Our health care system is not really a system. It does a bad job of coordinating transitions between clinical settings. Communication is poor and inconsistent, and the CCRC was using paper charts. The nurses had too many patients, and they were licensed practical nurses (LPNs), who lacked the training that registered nurses (RNs) have.

We thought we could overcome these issues and did as long as my mother was in our care. We managed to keep her comfortable and at home until 42 hours before her death. But those last hours were awful because of our decision to move her to the CCRC’s nursing facility.

I have to live with that. My mother may have died badly because of it. The question is: How many more will?

Marian Grant is a palliative care nurse practitioner with the University of Maryland Medical Center. Her email is msgrant@comcast.net.

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