For nearly ten years, nearly every time my spouse, Teddy, was hospitalized, the staff inquired if he had an advance directive. He did have one: It was notarized and provided to every doctor he consulted and every hospital he went to, including the one where he passed away.

However, on the final day of Teddy’s life, the treatments he received were directly against his documented wishes in his advance directive: no resuscitation, no intubation.

Teddy was clinically departed when the CPR and intubation began. There was no returning to his former self. So why weren’t his wishes honored?

I have since discovered that what Teddy went through is not uncommon in a health care system that values aggressive treatment above everything, including patient directives. I see this model mirrored in media outlets emphasizing health and health care. The voices heard there are far more often those of doctors than patients. Yet, patient voices are crucial, particularly regarding end-of-life care.

During the last seven to eight years of Teddy’s life, his health declined, as he battled COPD, two heart attacks, atrial fibrillation, and kidney issues. We had extensive conversations about the type of end-of-life care he desired. He did not want to be connected to machines. He did not want artificial nutrition. He did not wish to be intubated. He wanted comfort care, and when his time came, he wanted to hold my hand. He felt reassured knowing that his advance directive was in place and that we had discussed it together.

On February 13, 2024, Teddy had a fall and fractured his hip. We went directly to the hospital. Although the surgery went well, a day later things began to shift. His breathing became labored; he was struggling. At that moment, a group of respiratory staff entered, and feeling like I was obstructing them, I stepped outside.

That night, I received a call from the hospital informing me that they had intubated Teddy. They assured me it was only temporary. I replied, “Alright.”

When I returned to the hospital the next morning, they had removed his breathing tube as anticipated, but Teddy was upset about being intubated. It shattered my heart that he felt betrayed by me, his health care proxy. Following my sister-in-law’s advice, I checked with his case manager at the hospital to confirm they had his advance directive, and I provided additional copies. I thought that would make a difference.

The last time I saw my husband was on February 24. That afternoon, shortly after returning from the hospital, I received a call stating that Teddy had coded, and they were intubating him again. I shouted, “Tell them to stop!” I hurried back to the hospital to see Teddy and say my farewells. When I arrived, he still had the tube in his throat and mitts on his hands to stop him from pulling out a nasogastric tube.

Today, I tell others that I am mourning two losses: I mourn the loss of my husband of 58 years, my dearest friend, and the father of my children. But I also mourn the loss of the farewell Teddy wished for. He simply wanted to hold my hand and leave peacefully. He was not permitted to do that.

I now realize that purely having advance directives is insufficient to guarantee someone the end-of-life experience they desire. That necessitates ongoing discussions with healthcare providers. However, the responsibility should not fall on patients and their proxies to make themselves heard by the medical professionals caring for them. Hospitals and healthcare workers need a significant change in approach, one that prioritizes patient-directed care and proactively familiarizes themselves with their patients’ preferences.

Teddy and I were unaware of how naive we were to believe that his healthcare providers would not promptly resort to unnecessary or unwelcome interventions and invasive procedures, despite his clearly expressed wishes. I suspect many other baby boomers are similar to us, unaware of all that’s needed to secure the care they seek at the end of their lives.

I’ve gained a lot of knowledge since Teddy’s passing, but none of it will afford me and Teddy the farewell we should have had. It should not be too much to expect that medical professionals listen to what their patients want and respect, rather than overtly ignore, their wishes. We all deserve that.

*Susan Hatch is a retired certified nursing assistant and medical office manager from Dover, New Hampshire. After her husband, Clifton “Teddy” Hatch, was intubated and resuscitated despite having clearly stated in his advance directive that he did not want these interventions, she began advocating for enhanced patient-directed care in hospital settings and for greater education on end-of-life planning.*