End-of-Life Choice, Palliative Care and Counseling

Against Their Wishes

Voices of Compassion > Stories > Against Their Wishes

Telling stories is one of the best ways to raise consciousness and understand ourselves. Stories empower and inspire reform. So last year we asked people to write about the unnecessary tragedy of bad deaths.

Children, spouses, caregivers, clinicians and neighbors submitted stories that witness a life’s end robbed of the honor and dignity it deserved. Compassion & Choices thanks all this year’s entrants. Each is moving, honest and achingly sad; selecting a winner was difficult. But among the many entries, Gretchen Barry’s vivid recounting of how her father was denied “an individual’s right to a peaceful and dignified death” took the prize.

Here is her story.

Unwanted Treatment at Life’s End

On June 25, it will be six months since my father’s death. The last several weeks of his life were horrifying, and I don’t use that word lightly. It has taken me this long to be able to write about what took place and how it impacted him, my mother and the rest of my family. I knew eventually that I would want and need to speak out about it.

The five or so years preceding my father’s death were marked with continued decline in his physical and mental health. He endured several surgeries and had limited mobility, so he, and my mother as his caregiver, had become increasingly isolated. He was prone to falling, which required 911 calls to get him back on his feet. In the last two years there were a dozen or more emergency calls.

In May 2010, he fell once again and broke his hip for the second time. He went through surgery, and although he had an AD [advance directive] on file with the hospital, life-saving measures were used on him while he was there. Shortly after that he was moved to a rehab/care facility. We felt lucky that the facility had a bed available because it is considered one of the best facilities in their area. They were given his AD, and they went to work on a rehab plan.

As the months went by, it became more and more difficult for him to do anything for himself. The rehab was not successful (not the fault of the PTs [physical therapist] and OTs [occupational therapist], who were terrific), he could not feed himself, and he grew increasingly depressed, angry and confused. We also noticed that he was having difficulty swallowing and would often choke on his food.

Although he didn’t say anything, it’s clear in hindsight that he was probably afraid to eat so he would only attempt to eat ice cream (one of his favorite foods) or things that were easy to swallow. It was at this point that the situation took a troubling turn.

Because of his difficulty swallowing, and at the request of a speech therapist, he was taken to a local hospital for an x-ray on his throat. My mother and I were with him when the test was done. The therapist shared the results, which showed that his esophagus was nearly 100% blocked. They took him back to the care facility and told us that a doctor would read the x-rays and give us a diagnosis.

Later in the day, we received a call from a nurse at the care facility who informed us that they were taking him back to the hospital because he needed a feeding tube. Until that could be done, he had to be fed through an I.V., which they were not able to do. I asked about our options and was told that they had already asked my father what he wanted, even though he had cognitive challenges and was not able to understand the procedure or the consequences. He agreed to the procedure, so we didn’t have any other options. Then the nurse made a statement that shocked me. She said, “Surely you don’t want to starve him.”

We met him at the hospital where the resident on staff that Friday evening explained the PEG [percutaneous endoscopic gastrostomy] tube; however, he was also the only person to actually say that it would likely not prolong his life and therefore may not be necessary.

Dad spent the weekend in the hospital and begged for food the entire time. At one point he reached out to me and pleaded for me to get him ice cream. We tried to explain to him what was happening, but his mind was checking out, and he started hallucinating, probably as a way of coping with his fear. On Monday morning the doctor came in accompanied by two residents, including the one who had treated him in the emergency room when he was first admitted. The physician in charge explained to my father that a tube would be inserted in his stomach and that he would feel better after that was done.

He couldn’t comprehend what it meant, that he would never taste food again.

He couldn’t comprehend what it meant, that he would never taste food again.

I will never forget standing in the hallway that day with my mom and the three doctors. Clearly we were struggling and had not yet given them the approval to do the surgery. We could have refused right then and there but the guilt that we felt based on what the doctor was telling us was too much to overcome. One would think that a healthcare provider treating the elderly had been through this before and would have some sound advice for the family. The head physician said there were no other options because if we didn’t do this he could eventually aspirate and die. Neither of the residents said a word, but I sensed they did not necessarily agree.

There was never a discussion about his prognosis or his AD, and we were never asked about his quality of life. They were myopic, treating that one condition and not looking at the whole picture. They weren’t concerned with the fact that he had stopped reading, watching TV, walking, even talking, so food was his last pleasure in life. Period.

The decision was gut-wrenching for my mother, and I have to admit that I secretly hoped he would not wake up from the anaesthetic. Needless to say he made it through, and they took him back to the care facility. The last two weeks he continued to beg for food. He just wanted some ice cream. I have a difficult time reliving that. I feel we tortured him in his last days, and rather than try to make it peaceful, it was traumatic and painful for him. On December 23, the care facility called my mother and told her they had to take him back to the hospital because his throat was blocked with phlegm and needed to be suctioned. Still nobody suggested we call in hospice. It took my sister, the trained RT [respiratory therapist], to question their decision because as a result of the feeding tube, he would have to be suctioned frequently, and what was the point?

I was in California when the call came from my sister. She was struggling with the fact that she had to be so emphatic about stopping his treatment. No one ever offered hospice as an option. She had to insist that they be called. They came on Christmas Eve, which finally gave my father some peace. He died with my mom and sister by his side on Christmas morning.

As I write this it is still difficult to come to terms with the last days of my father’s life. It’s painful to see my mother live with the regret. She feels it was partly her fault for not being aggressive enough in refusing the PEG tube. She thought the medical professionals knew what was best even though her gut was telling her otherwise. My father was a proud man, a Korean War vet, worked hard to support his family and was married to my mother for 59 years. We dishonored him in his last few weeks because the medical community and our society have yet to fully come to terms with a peaceful death as an option.

Until a loved one goes through it, one cannot possibly understand the depths of this struggle. I’ve spoken to many people, some who have had good experiences, many who have not. It really depends on the physicians who control the outcome. We somehow need to help people understand that what we are fighting for is an individual’s right to a peaceful and dignified death.

-Gretchen Barry

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