Swallowing and the Last Gulp of Air

It was Thursday evening, March 30th. The NBC News commentator just announced that Terri died. I changed the channel to […]

It was Thursday evening, March 30th. The NBC News commentator just announced that Terri died. I changed the channel to CBS, and heard the Pope had just received a feeding tube. It seemed that “feeding tube” was the new media buzz word. Since then, the Pope’s death filled the headlines and Terri Schiavo’s saga faded into yesterday’s news oblivion.

Her case became a heart wrenching public drama that is privately, but just as painfully, carried out in thousands of hospitals, nursing care centers and hospices around the country every day.

I am a qualified speech language pathologist with experience in feeding therapy. I’ve sat with families as they made these excruciating decisions for a family member. I also made some painful decisions about my own father.

My father, Louie Cohen, lived in New York most of his life and came to live with my husband and me three years before he died. During that time, his multi-infarct dementia gradually robbed him of his mental abilities. On our care team, I was the case manager and my husband was the devoted nursing assistant. Dad brought us great joy despite his disabilities and declining ability to initiate conversation.

During the last week of his life, he ate well at our Thanksgiving dinner. By Sunday, he couldn’t swallow. Co-ordination of all his physical movements fell apart, too.

We took him to the hospital that Monday. I remember chatting with him as he sat in his wheelchair in the waiting room; he was still smiling and interacting. By Tuesday, he was in a low vegetative state, but not a coma. He didn’t seem to know we were there.

He wasn’t eating. However, if I did therapeutic mouth texture massages, he would open his eyes, look at me and swallow a tiny bit of pudding. One time, when he opened his eyes, they rolled back like a broken China doll. That static look was the brain trying to register stimuli but failing to make connections.

The doctors told us that the situation was grave and Dad wasn’t going to recover. We didn’t want to believe it. We knew the situation was severe but we just didn’t want to give up hope.

Sadly, to our shock and surprise, he died the next day. However, there was one saving grace. We had discussed his living will with him months before, when he was still of sound mind. He said he wanted no heroic measures. We also asked him if he wanted to be buried in Minnesota so we could visit his grave. He said he would like to stay near us, even in death, even though the rest of the family was buried in New York.

Needless to say, this created a family furor. One of my aunts didn’t speak to me for five years because we buried him here. We knew all my father’s wishes, but my aunt had another agenda. She tried to make me feel guilty and sometimes it almost worked.

Like my aunt, Terri Schiavo’s parents had their agenda and they did not want to let go. Once they got the lawyers and the courts involved, it became a media circus beyond the scope of the of the initial issues. Once Congress and the president became involved, the real issues were blinded by political agendas.

Terri Schiavo’s husband knew her wishes, just as we knew my Dad’s wishes. The real focus of this debate should be about the rights of the patient to decide his/her own fate. The Schiavo case is essentially an ugly family dispute that might have been solved with sensitive counseling and mediation early on. The sad part is that political groups used her plight to further their agendas.

If anything good comes out of this public discussion, it’s that even young people should discuss their living wills. If our wishes are known and written down, there is no dispute about what to do.

In a conversation I had with a physician, we both agreed that the entire locus of resolving a dilemma like this lies amongst the family, the patient, and the physician.

I once worked with a very wise physician in a nursing care facility. She made a decision that I will never forget. The patient was an 81-year-old woman who had had quite a few strokes and had been on the verge of dying several times already. Each time the family gathered and prepared for the worst. Each time she was brought back to life by heroic measures. Each time her neurological functioning spiraled down. She couldn’t speak; she couldn’t eat; she couldn’t move. Then, the question arose about inserting a feeding tube to prolong her life.

This courageous and creative doctor had a wise but unorthodox plan to resolve the family’s angst. She personally spoke to everyone on the patient’s care team and asked for their opinions. She spoke to me, the nurses, the nutritionist, the nursing assistants, and the family members. In a nutshell, she got a 360 degree perspective on what was going on to help her make the best decision for the patient.

She decided to have intensive swallowing therapy for this patient twice a day for two weeks and not insert the feeding tube. After two weeks of intensive swallowing therapy, they would see how she was doing. A low tech personalized miracle was crafted by that physician-led team.

Within two weeks, the patient was eating pureed food and drinking thickened liquids. With a little assistance, she was eating on her own. and she didn’t need a feeding tube. The team worked with compassionate care. This patient lived with dignity for a year.

Without modern high tech medicine, Terri Schiavo would have died soon after her brain injury. Modern technology kept her alive. Every life is valuable whether you are a housewife, janitor or Pope. When the body can no longer function and all cognition is gone, it’s time to let go.

If the truth of the patient’s wishes are not known, last rights are denied despite last rites being given. When the patient’s last breaths of life are shared with a loving family and a compassionate care team, everyone can let go together and find some peace. If the patient, family and the medical staff are in conflict, peace will be hard to find.

Life is so precious, but when it’s time to let go then we all have to let God take over.

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