The Greatest Secret in Healthcare — And No One Told Me About It

My sister died.

I’ve been her caregiver for the last three and a half years.

Over the years, she suffered from increasingly severe dementia and cognitive impairment. This was matched by a decline in her physical capabilities. Getting up was painful.

Every step she took was painful. She lived in a place and town she hated. It all reminded her how much she enjoyed her former life of independence and full agency. She pined for Miami and the beach, the pool, the weather, her friends, her apartment, and Miami’s culture, the people.

Her nights became horrific.

The dementia would cause bouts of confusion, hallucinations, and crippling anxiety. She wasn’t experiencing bad dreams; these were nightmares. And these nightmares were her reality. She would speak of these nightly, awful experiences as though they were true.

The men who abducted her, the women who wanted to have sex with her, the men who wanted to rape her, the people who were transporting her to dark cellars with no way out. Wanting to leave but being held hostage or finding herself in jail for no reason at all. It was her mind living a life of its own, and her body was along for the ride.

After one of these awful nights, I picked up my sister to take her to the dentist. On the way out, she fell and broke her nose on the frame of an elevator. EMS was called, and she was taken to the hospital. It was there, for seven days, that she literally lost her mind. The only thing that helped her stay calm was psychotics, and even they weren’t effective.

I happened to talk to a geriatrics consultant who knew my sister. She gave me a lot of good advice, but the best advice was to ask for a Palliative Care Doctor consult in the hospital. No one in the hospital brought up this option amid the chaos.

On the sixth day, the Palliative care doctor appeared.

This changed everything.

It was the first doctor in our healthcare system who talked about her quality of life. They wanted to know all about my sister. They asked questions about who she was, how she got to Atlanta, what’s been happening since she’s been here, what happened that might have caused the fall, and what’s been happening at the hospital.

After this unhurried discussion, the Palliative care doctor asked if we could talk the next day. She needed to research my sister’s case and medical history. She came back the next day and recommended Janet to the hospice service. She further recommended we move her from full medical care to comfort care.

There was a nurse’s aid in my sister’s room with us when I got off the phone with the Palliative care doctor. I told the nurse’s aide that I had decided to move my sister to “comfort care” status.

She said with shock in her eyes, “I’m so sorry.”

I asked, “Why?”

She answered, “I’d rather not say.”

I sought out the nurse and told her, “We decided to move my sister to comfort care.”

She said, “Really?”

I said, “Do you disagree with my decision?”

She said, “Are you asking me for my opinion?”

“I guess so,” I answered.

She said, “I am not going to give you my opinion.”

The question then became, where does my sister go next for care?

She was not ambulatory, so the next step was to send her to a skilled nursing facility for physical rehab. But I objected to this. She was not in a sound state of mind to be motivated to rehabilitate. She just wanted to be left alone.

I called the palliative care doctor and discussed this with her. She had me speak to a hospice specialist who then consulted with the palliative care doctor.

The decision came back that my sister qualified for inpatient hospice care. We chose a facility. The facility’s doctor approved her, and we arranged for transport from the hospital. I visited the hospice facility and was amazed by their understanding, empathy, and professionalism.

The mission of inpatient hospice is to keep my loved one comfortable until the moment of their passing. I couldn’t believe my sister was in the last days of her life. But the hospice staff convinced me that this was true. She wasn’t eating or drinking, and she was experiencing terminal agitation, a medical term.

They kept her comfortable in a beautiful place, Wellstar Hospice Center, called Tranquility. It is a beautiful facility with eighteen beds located on the edge of the Kennesaw Mountain State Park. It is staffed by the kindest and most loving people I have ever met.

My sister told me two days before she died, “I like it here. I love you.”

These were her final words of life to me. She passed on two days later, with me in her room.

It was so calm, unhurried, and peaceful. I would be so lucky to go this way.

The greatest lesson I learned.

If ever I am getting to the end of my life, I will request the services of a palliative care doctor. These doctors stand in the doorway between preserving life at all costs and keeping people comfortable as they die.

These doctors are the counterbalance to our healthcare system.

We are not designed to live forever. We are designed by God to be born, live, and finally, to die. The healthcare system will wear itself out on the “live” part of life. They will do everything they can and spend every dollar they can to keep a person alive. This is their mission.

The palliative care doctor draws us back, as patients and caregivers, from the disease being treated. The focus is on how to fix that which is threatening the patient’s life. The palliative care doctors give us all a perspective on the big picture of our lives.

They ask the question, “If your sister is kept alive, what will be her quality of life?”

This was the first doctor to ask this question during the three and a half years of caring for my sister. As my sister’s dementia progressed, I would ask this question, but never to a doctor. Now, finally, a doctor asked this question. A doctor who understood the alternatives to doing all that can be done to preserve life. A doctor who was concerned about the quality of life.

I learned it is critical to get a palliative care doctor involved in treatment early in a chronic disease process. As the patient, I’ll still make all the decisions about my health, but at least I’ll have balanced advice from two MDs.

And this is why I think palliative care doctors are the greatest secret in healthcare.